JAMES ZADROGA 9/11 HEALTH AND COMPENSATION ACT OF 2010

PUBLIC MEETING

MARCH 3, 2011

 

Jacob Javits Federal Building

26 Federal Plaza

New York, New York

______________________________________________________________
2

TRANSCRIPT LEGEND

The following transcript contains quoted material. Such 

material is reproduced as read or spoken.

In the following transcript: a dash (--) indicates an 

unintentional or purposeful interruption of a sentence. An 

ellipsis (. . .) indicates halting speech or an unfinished 

sentence in dialogue or omission(s) of word(s) when reading 

written material.

-- (sic) denotes an incorrect usage or pronunciation of a 

word which is transcribed in its original form as reported.

-- (phonetically) indicates a phonetic spelling of the 

word if no confirmation of the correct spelling is available.

-- "uh-huh" represents an affirmative response, and "uhuh" represents a negative response.

 -- "*" denotes a spelling based on phonetics, without 

reference available.

-- (inaudible)/ (unintelligible) signifies speaker 

failure, usually failure to use a microphone.
3

PROCEEDINGS

1 (10:15 a.m.)

2 DR. HOWARD: The Department of Health and Human Services 

3 is holding this meeting to hear about your concerns and 

4 issues with regard to the new James Zadroga 9/11 Health 

5 and Compensation Act. We're holding the meeting at the 

6 request of several members of the New York State 

7 Delegation in the U.S. House of Representatives --

8 Representative Carolyn Maloney, Jerrold Nadler and Peter 

9 King. Unfortunately they're not able to be with us 

10 today because there are important votes in the House 

11 today in Washington, but their staff is going to be here 

12 listening to your input.

13 So as you know, the -- the 9/11 Act was signed by the 

14 President on the 2nd of January. Title 1 establishes 

15 within the Department of Health and Human Services the 

16 World Trade Center Health Program. And Title 2, as you 

17 probably know, amends the September 11 Victim 

18 Compensation Fund and is administered by the U.S. 

19 Department of Justice.

20 So today what we wanted to do was to provide anyone 

21 interested with five minutes of the spoken word, but the 

22 written word is always available to you, and we 

23 encourage you to go to our web site at NIOSH.gov, just 

24 enter the word "docket" and you can enter as much of the 
4

1 written word as you want. And we encourage you to do 

2 that. That docket's going to remain open at least till 

3 April 29th, and can be extended, so -- so please avail 

4 yourself of that if you -- if you don't want to speak 

5 today or -- or don't get a chance to speak today.

6 Transcripts from the -- from the meeting will be 

7 developed and will be available publicly, so it's 

8 important for me to make a little bit of a disclaimer 

9 here. If you're making a comment orally today and --

10 and you give your name, no attempt will be made to 

11 redact the name from the written transcript and it'll 

12 appear in the transcript. So if you reveal, you know, 

13 personal medical information, that information is very 

14 difficult to redact, and so I encourage you not to -- 

15 not to reveal things that you don't want everybody to 

16 see in public. So keep that in mind.

17 So as I say, we're here to hear the spoken word, but 

18 please avail yourself of the electronic docket as -- as 

19 we go through the next few months and your thoughts 

20 mature and you hear more information that you'd like to 

21 comment on.

22 Just one last sort of disclaimer. This is an input 

23 meeting, so we're interested in hearing your input. 

24 It's not an output meeting from us. We're still in the 

25 process of understanding the bill and making plans for 
5

1 implementation, so this is an opportune time to hear 

2 from you. We want to maximize that time today. So if 

3 anyone's interested in the current programs, 

4 representatives will be here in Rooms D and C for that.

5 I'd now like to introduce our moderator for today that 

6 will keep us all on time, our five-minute limit, Larry 

7 Elliott from NIOSH, who works in our Cincinnati 

8 facility. And Larry will explain more about the fire 

9 exits and our schedule for today.

10 Larry?

11 MR. ELLIOTT: Thank you, Dr. Howard. Good morning, 

12 ladies and gentlemen. We certainly appreciate your 

13 presence here today, and your participation. Thank you 

14 for coming. We had prepared this meeting with the 

15 thought that there would be a large, large crowd who all 

16 wanted to speak, so we posted in the Federal Register

17 notice and in the handouts that have been given you that 

18 we would -- in order to allow everyone an ample 

19 opportunity to have their voice heard, we would limit to 

20 five minutes.

21 I have this fancy little machine right here that, when I 

22 turn it on, gives you a green light; four minutes in 

23 it'll give you a yellow light; and then when the red 

24 light comes on I'll get a hook out. Doesn't look like

25 we're going to have 70 speakers at this point in time 
6

1 this morning, so if we go through the complete roster of 

2 those who've signed up and somebody wants to speak 

3 again, or somebody else decides they want to speak at 

4 that point, then we'll continue by allowing you to speak 

5 a second time, or a third time if you wish, but we're 

6 going to keep the five-minute clock going on you.

7 Some housekeeping issues -- safety. We know that 

8 there's no planned building evacuation here today, but 

9 in the event of an emergency the loudspeaker will come 

10 on. If there's a need to evacuate the building, the 

11 Fire Warden will tell us over the loudspeaker to exit 

12 the building. Don't use the elevators. There are a set 

13 of stairwells and we can lead you to those stairwells.

14 The restrooms, they are located -- if you go back out 

15 the hallway and across from the elevators you'll see the 

16 restrooms. There are also a couple of small restrooms 

17 over on the side of this room -- on that side over there 

18 (indicating).

19 I think that covers all of my business at this point, so 

20 if you haven't signed up to speak and want to do so, 

21 please see the ladies at the back and they'll get you 

22 signed up, and we'll be ready for our first speaker here 

23 in a moment.

24 Any questions before I sit down? Yes, ma'am?

25 UNIDENTIFIED: (Inaudible)
7

1 MR. ELLIOTT: Microphone's not working? Thank you. So 

2 we'll -- if you're up here and you're using the mic, I'd 

3 ask you to adjust it, move it around. Let's see if we 

4 can get a clear recording.

5 So I'm going to call the first -- this one works. I'm 

6 going to call the first three names off so -- you may 

7 already know who you follow, but we have Jim Ryder 

8 first, then Rhonda -- and I'm -- I apologize if I mis--

9 Villamia, if I mispronounce your name, please allow me 

10 to try to get it right -- and Jennifer Spano. Those are 

11 the first three, in that order, so we'll go with Jim 

12 Ryder, please.

13 MR. RYDER: Good morning, gentlemen. I'd like to thank 

14 Dr. Howard and Mr. Elliott for taking the time to be 

15 with us here today. I'd like to thank everybody in the 

16 audience for coming. If you're in the back and you 

17 can't hear me, please let me know.

18 MR. ELLIOTT: Readjust your --

19 MR. RYDER: Testing one, two -- can everybody hear me in 

20 the back? Can you hear me in the back?

21 Okay. Again, I'd like to thank Dr. Howard and Mr. 

22 Elliott for having us here today. This is a very 

23 important day. I'd like to take a moment to introduce 

24 myself and everybody else with my board, if I may. Does 

25 the clock have a pause?
8

1 Thank you. I'd like to take a moment of your time, 

2 gentlemen, to introduce our documentation to you. I'll 

3 describe us to you in a moment.

4 It is my understanding after a brief conversation with 

5 Dr. Howard that there are other people from the federal 

6 government that are here. We have more of these; if 

7 anybody else would like these, you're welcome to them. 

8 At the end of the day, if we have any leftovers, if 

9 there's anybody else in the audience that would like 

10 them, we'd also.

11 If I can also take another moment, before we start, to 

12 introduce the FealGood Foundation Zadroga Bill Action 

13 Team, known fondly as the Zad Team -- if you can stand 

14 up. It's pretty much all the people you see in front of 

15 you in red. We've spent -- our team has -- has 

16 responded down to Washington, DC to pursue the passing

17 of the Zadroga Bill at least 100 times -- or close to 

18 it. And if you counted us individually as how many 

19 times we went there, it's well over 1,000 times that 

20 we've been to DC.

21 We know this building very little. We know the Senate, 

22 the Russell, the Caine* and all the other buildings very 

23 well. And as we progress with this bill, I can assure 

24 you that the FealGood Foundation will begin to know this 

25 building very well, as well. We are determined. We are 
9

1 pursuant (sic). We are vigilant and we don't waver. 

2 We're here for a reason, and that is all of the 9/11 

3 first responders like myself, as well as the families 

4 that live down there, the children that learn down there 

5 and the employees that had to pursue (sic) from there on 

6 9/11. Thank you, gentlemen.

7 My name is Jim Ryder. I'm a New York City police 

8 officer. I retired in July of 2005. From then till now 

9 I've spent a lot of time in my doctor's office because I 

10 have a heart ailment that they can't identify. When I 

11 sleep, I wake up 70 to 90 times a night because of sleep 

12 apnea, and that is the least of my concerns.

13 My greatest concern, as a parent, is my four children. 

14 I would like to be here for them as long as I can, not 

15 having realized that when they were born. 9/11 changed 

16 me, as I'm sure it changed everyone else here. The 

17 FealGood Foundation Team is aware of that. We are just 

18 like you. If you give us your faith and your time and 

19 your efforts, I'm sure we can make a difference here 

20 like we made a difference in DC.

21 There are many concerns that we have about Ground Zero 

22 and the health of those who were down there. There were 

23 toxins floating around that none of us could identify. 

24 The federal government, gentlemen, told us that the air 

25 down there was safe. We all know that not only was that 
10

1 a fallacy then, it is a gross statement now. There is 

2 no way that anybody in their right mind would know that 

3 it is not of great concern. Because of what happened 

4 down there with those buildings, and because those 

5 buildings fell, there were toxins in the air. If you 

6 can just use your imagination with things like asbestos, 

7 cocaine from the DEA vault, computers that were crushed, 

8 buildings' cement and other things, these toxins were 

9 deadly. These toxins did not belong in our bodies, but 

10 they got there.

11 Our concern as the Zadroga Action Team is there is a 

12 list of cancers that were -- I apologize, somebody moved 

13 my paperwork. There was a list of cancers that were 

14 affected -- or people were affected by these cancers --

15 and I'm mumbling here so give me a second.

16 (Pause)

17 Let me just start the pitch about cancer again, if I 

18 may. I apologize for that.

19 Cancer is a type of disease that will get into your 

20 system through the air. We're aware of that, and we're 

21 aware that people are suffering with that type of cancer 

22 -- or those types of cancers. And if I may, I'd like to 

23 tell you about those types of cancers -- as we know 

24 them, and we're not doctors.

25 Skin cancer, lung cancer, lymphoma, liver cancer, colon 
11

1 cancer, thyroid cancer, testicular cancer, leukemia, 

2 melanoma, brain cancer, kidney cancer, bone cancer, 

3 throat cancer, breast cancer, stomach cancer, laryngeal, 

4 tongue, rectal, esophageal, myeloma, pancreatic, 

5 sarcoma, tonsillar, sinus and nasal, gall bladder, 

6 neurological, cervical, eye, adenocarinoma (sic) of the

7 esophagus, digestive, gastrointestinal, muscular, anal, 

8 ovarian, mesothelioma, parotid, small intestine, 

9 skeletal, parathyroid, penile, pituitary, urethral, 

10 bladder, genitorany -- I'm sorry, I'm saying that wrong, 

11 genitorinary (sic) and gynecological. Boy, I didn't 

12 think I was going to get through that list, and I'm not 

13 a doctor.

14 Our concerns about these cancers, ladies and gentlemen, 

15 is they attack -- when the Twin Towers were attacked and 

16 those buildings fell and those toxins became airborne, 

17 those deadly toxins were breathed in by myself and 

18 everybody else that was down there. I spent four years 

19 myself, and I'm one of the lucky ones, because I can 

20 look you in the eye today and say I don't have cancer. 

21 But a good friend of mine, Tony -- who's sitting in this 

22 audience -- and I just went and sat in the hospital with 

23 a friend who does have cancer, and has children. And 

24 he's struggling to look us in the eye and say "You're my 

25 advocates. I need you to fight for me because cancer is 
12

1 not covered."

2 Gentlemen, we need to expedite the coverage of cancer. 

3 We need to open our eyes and realize that these toxins 

4 were there. We were there. Our bodies are required to 

5 breathe. And if a gentleman goes on that pile and 

6 scratches his leg and three months later has got a sore 

7 on his leg that goes from his knee to his heel, and that 

8 sore is still there today, there is a concern -- there 

9 is a genuine concern -- of these types of cancers that 

10 are getting into people's bodies, we know full well that 

11 they did, and how is it that they're affecting -- or 

12 they are affected by these cancers.

13 It is therefore not surprising that a record number of 

14 cancers have been reported along the 9/11 community. 

15 People are going to the site and Centers for Excellence, 

16 and they're telling people that they can't breathe, 

17 they're waking up, they have sleep apnea, they have GERD 

18 and they have all the other disease that are not easy to 

19 deal with. But then they're also telling them they have 

20 cancer. "Go out the door, go find yourself a doctor; 

21 that's not covered." That's not covered, but we know 

22 full well, gentlemen, that these people stood down 

23 there, breathed in those toxins, and it damned well 

24 should be covered.

25 The addition of cancer to this list needs to be tracked. 
13

1 We use -- need to use technology that is afforded to us 

2 today because of the likes of Steve Jobs and Bill Gates, 

3 two men that are my fans. I'm a tech guy. I'm a geek, 

4 and I know that the technology's there to track it.

5 And the last thing I'll say, because the light is red, 

6 is: In the case of cancer we cannot wait for science as 

7 usual. Thank you.

8 MR. ELLIOTT: Thank you, Jim. And if you didn't get 

9 finished, we'll try to get you back on.

10 Next we have Rhonda.

11 (Pause)

12 MS. VILLAMIA: Thank you. My name is Rhonda Villamia. 

13 For nine months I volunteered at the World Trade Center 

14 site with the Red Cross, Salvation Army and St. Paul's 

15 Chapel. Aside from providing care to the responders and 

16 workers who came into our respite centers for meals, 

17 rest, supplies, showers, or simply to vent, I did 

18 perimeter runs around the pile/pit in ATVs, bringing 

19 supplies and nourishment to those who could not leave 

20 their posts. I also served at the respite tents right 

21 beside the pile/pit. Of the 26 World Trade Center 

22 covered conditions on the NIOSH list, I have 12. In 

23 addition to these 12 I have thyroid disorders.

24 I have been a simultaneous -- I have been a simultaneous 

25 focus group interpreter for Hispanic marketing research 
14

1 since 1982. As my physical and psychological health has 

2 increasingly deteriorated, I have had to incrementally 

3 reduce my workload to the point that I can no longer 

4 work.

5 I am part of a group of responders who traveled to 

6 Washington with the FealGood Foundation to help put a 

7 face to the staggering statistics in order to have our 

8 leaders understand the importance of the Zadroga Bill. 

9 I have been advocating for the health care needs of the 

10 9/11 community over the past three years, initiating 

11 dialogues with the directors of the World Trade Center 

12 Monitoring and Treatment Programs, and serving on the 

13 World Trade Center Registry Community Advisory Board. I 

14 come before you now not only as an individual with 

15 concerns, but also as a voice for the consensus of 

16 issues we are raising here today in an effort to 

17 communicate priorities for the implementation of this 

18 Act. It is for this reason we have created the Zadroga 

19 Action Team.

20 We urge NIOSH to ensure that there is an agreed-upon, 

21 consistent quality of medical care provided to all 

22 participants in the World Trade Center health program. 

23 We are particularly concerned with the following:

24 All data centers should operate in a fully transparent 

25 manner, using standard protocols to capture data on 
15

1 patient medical history. In order for medical 

2 understanding of World Trade Center illnesses to keep 

3 pace with the emergence of new health effects, 

4 comprehensive health data must be kept for each 

5 participant. This includes intake, monitoring and 

6 treatment visit data, as well as data from non-World 

7 Trade Center doctor visits. Medical monitoring exam 

8 data and treatment doctor data should include 

9 information on all symptoms and diagnosed conditions, 

10 whether or not they are deemed to be World Trade Center11 related.

12 Data from mail home questionnaires and monitoring visit 

13 interviews should be immediately printed out so that the 

14 patient can confirm the data has been captured 

15 accurately. Ideally, errors caught on the first review 

16 should be corrected on the spot. There should be a two17 week period for participants to review the document for 

18 any additional errors, which would be corrected prior to 

19 the document being entered into the official record.

20 Doctors' evaluation findings should be done 

21 electronically, not handwritten, and provided to the 

22 patient at the end of the visit. Any unusual medical 

23 conditions the patient may be experiencing on the day of 

24 the appointment should be noted in the record. 

25 Neglecting to do this could not only skew the patient's 
16

1 results -- for example, giving a false positive -- but 

2 it could also skew the data used for the research at 

3 large.

4 Psychological evaluations should be done early in the 

5 appointment so that disturbing emotional feelings that 

6 may be triggered can be addressed while the patient is 

7 still at the medical center.

8 Due to the 9/11 community's unique exposure to the 

9 unprecedented toxic brew, the mandate -- and the mandate 

10 of this research and monitoring program, patients should 

11 be given blood tests that are more sophisticated in 

12 evaluating toxins, inflammatory and autoimmune 

13 conditions. Blood and urine tests should include 

14 screenings for cancers, where such tests exist. 

15 Patients should be able to choose their treatment 

16 doctor, and have a reasonable process by which to change 

17 doctors. Patient records within the monitoring and 

18 treatment program should be cross-referenced when the 

19 doctor's evaluating the patients' conditions. Currently 

20 in the treatment program, patients' non-World Trade 

21 Center-related conditions are recorded, but they are not 

22 analyzed or included in the research, nor are they 

23 referenced in the monitoring doctor's report.

24 Doctors and staff must have a comprehensive 

25 understanding of the documentation necessary to qualify 
17

1 participants for disability claims, or any other benefit 

2 for which the patient may be eligible. And they should 

3 provide these documents in a timely manner.

4 Thank you for treating us with dignity and respect.

5 MR. ELLIOTT: Thank you, Rhonda. Next we have Jennifer, 

6 who'll be followed by Catherine Hughes, and then David 

7 Perezant -- Prezant.

8 MS. SPANO: Hello. I am Jennifer Spano. I worked at 

9 Ground Zero for approximately nine months with the 

10 Salvation Army, first as a volunteer and then as an 

11 employee. I was a shift supervisor for the respite 

12 center that serviced all Ground Zero workers, and that 

13 was one of the community's hubs during the rescue, 

14 recovery and cleanup operations at the World Trade 

15 Center site.

16 (Pause)

17 Should I start over, Dr. Howard?

18 MR. ELLIOTT: Yes, why don't you start over.

19 MS. SPANO: How is this?

20 MR. ELLIOTT: Yeah, we're going to start over.

21 MS. SPANO: Hello. I am Jennifer Spano. I worked at 

22 Ground Zero for approximately nine months for the 

23 Salvation Army, first as a volunteer and then as an 

24 employee. I was a shift supervisor for the respite 

25 center that serviced all Ground Zero workers and that 
18

1 was one of the community's hubs during the rescue, 

2 recovery and cleanup operations at the World Trade 

3 Center site.

4 Post-Ground Zero I volunteered with several 

5 organizations, including family groups and groups of 

6 former Ground Zero volunteers. Immediately following 

7 the closing of the site we stayed together as a 

8 community, and we have remained together as one 

9 community until this day. I have since been introduced 

10 to and equally bonded with other members of the 9/11 

11 community, such as survivor groups.

12 After finally acknowledging and seeking help for my 

13 PTSD, I gathered myself together enough to enter a 

14 graduate program in Washington, DC. Shortly I will be 

15 receiving my graduate degree. While living in 

16 Washington I would join the FealGood Foundation whenever 

17 they were meeting in DC in order to participate in their 

18 grand effort to pass the Zadroga Bill. Once I returned 

19 to New York I would travel with them on bus trips to 

20 Washington to walk the halls of Congress, advocating for 

21 our bill.

22 I stand before you today to relate our community's 

23 concern about the implementation of the Act. I will now 

24 read some of the concerns listed in the Zadroga Action 

25 Team's document.
19

1 We urge NIOSH to ensure that there is an agreed-upon, 

2 consistent quality of medical care and treatment 

3 provided to all participants in the WTC health program.

4 We are particularly concerned with, one, participant 

5 accommodation. Although the literature states that the 

6 exam takes three hours, this does not accord with 

7 reality. The exam takes close to five hours, and is an 

8 all-day event. People cannot necessarily return to 

9 work, as they have promised their employer. Please 

10 communicate clearly the accurate duration of the exam. 

11 There should be late-night and Saturday appointments at 

12 least once a month in order to accommodate those for 

13 whom it is too burdensome to take off of work. There 

14 should be ample staffing so that optimum service can be 

15 provided. We expect something more than a bare-bones 

16 program. We ask that enough resources be provided to 

17 fund a first class program.

18 Two, tracking conditions. Each data center must 

19 maintain a centralized database with all monitoring data 

20 and diagnosed conditions. That is, whether or not the 

21 participant's condition is deemed to be WTC-related and 

22 whether or not the diagnosing doctor is a WTC health 

23 program clinician. From this data, data centers must 

24 produce periodic reports on illness incidence and 

25 prevalence for conditions emerging among the 
20

1 participants. Participants need to know which 

2 conditions are manifesting in significant numbers within 

3 the community. Updated incidence and prevalence data 

4 for cancers and other serious conditions diagnosed in 

5 the population should also be presented in graph form, 

6 and shared with participants -- whether upon request, 

7 when they come in for appointments, or in the 

8 newsletter.

9 Three, scientific analysis. If the Centers of 

10 Excellence will only evaluate and record those symptoms 

11 and diagnosed conditions on the covered list, their data 

12 will be flawed and inadequate. This does not meet the 

13 standard of scientific rigor. Further, this flawed data 

14 will produce flawed scientific research and undermine 

15 the effort to identify new conditions as WTC-related. 

16 This does not serve the needs of our community.

17 Four, the difference between programs. The survivor 

18 program is very different from the responder program. A 

19 survivor community participant is required to have a 

20 WTC-identified symptom in order to be enrolled in the 

21 treatment program. Then they get yearly revisits for 

22 monitoring. On the other hand, responders are monitored 

23 and then accordingly sent for treatment. We want the 

24 survivor community to be monitored in the same way that 

25 the responder community is. We want one list of 
21

1 conditions for the whole 9/11 community. Right now the 

2 Act is structured so that if a condition is added for 

3 responders, then it is added for survivors. We want to 

4 make sure that the reverse is also carried out such that 

5 survivor conditions can be added of their own accord, 

6 with responders following.

7 Five, exclusion barriers. In the certification of 

8 residents, students and area workers who are sick from 

9 being exposed to WTC dust and smoke in the geographical 

10 area between Houston Street and 14th Street, the 

11 treating physicians should have the discretion. The 

12 process for certifying prospective participants must not 

13 create a barrier to care.

14 Six, covered conditions. We implore you to consider 

15 PTSD as an illness that stands on its own.

16 Thank you for listening.

17 MR. ELLIOTT: Thank you, Jennifer. Now we'll hear from 

18 Catherine Hughes, then we'll have David Perezant, and 

19 then Rich Volpe.

20 MS. HUGHES: Can you hear me okay? Good morning, does 

21 that work? Okay. Good morning? Okay, great.

22 Good morning. I am Catherine McVey Hughes, the vice23 chairperson of Community Board One. On behalf of 

24 Community Board One I'd like to thank Representatives 

25 Maloney, Nadler and King, the primary sponsors of the 
22

1 James Zadroga 9/11 Health and Compensation Act of 2010, 

2 for requesting that NIOSH host today's public meeting to 

3 receive comments on implementing the provisions of the 

4 Act.

5 In addition we would like to thank NIOSH for its prior 

6 support of the 9/11 health issues for both the responder 

7 and survivor's communities, and for being here today.

8 The World Trade Center lies in the heart of Manhattan 

9 Community Board One, and many of us who were here when 

10 the towers were attacked are still living and working 

11 here. Some of us volunteered as first responders, and 

12 many of us continue to work or to attend school downtown 

13 in the aftermath of September 11, 2001 terrorist 

14 attacks.

15 CB-1 has strongly supported the James Zadroga Health and 

16 Compensation Act for many years, and we were very glad 

17 when the bill finally passed at the very end of the 

18 federal legislative session at the end of 2010. Today 

19 we would like to raise some concerns about how the bill 

20 will be implemented, including the World Trade Center 

21 medical moni-- World Trade Center program administrator 

22 who will be appointed, and the other issues regarding 

23 medical monitoring and treatment for survivors, 

24 education, outreach, clinical data collection and 

25 analysis, research on health conditions, and expansion 
23

1 of the diseases and conditions covered.

2 Under the 9/11 Health and Compensation Act, a World 

3 Trade Center medical program administrator will be 

4 appointed to run the World Trade Center health program 

5 to be established within the Department of Health and 

6 Human Services beginning July 1, 2011. I believe that 

7 the appointment of Dr. John Howard would ensure 

8 continuity of leadership and the implementation of the 

9 legislation. Dr. Howard is currently the director of 

10 NIOSH and coordinator of the World Trade Center health 

11 programs, and over the years Dr. Howard has met with and 

12 carefully listened to the concerns of the diverse 

13 coalition members of the survivor community. In the 

14 short term, an important part of the medical monitoring 

15 and treatment of survivors is the continuity of funding 

16 of the World Trade Center health centers while the 

17 legislation is being implemented. Continuity is 

18 important to the well-being of the patients and the need 

19 to retain specially trained, dedicated doctors and 

20 staff, especially funding for the pediatric program, 

21 including keeping a pediatrician, a pulmonologist, a 

22 child psychologist and development doctor. It is 

23 important to continue the healthy dialogue that the 

24 World Trade Center EHC Community Advisory Committee has 

25 had with NIOSH for several years. The education and 
24

1 outreach component of the World Trade Center EHC for the 

2 survivor community will be a critical component of the 

3 delivery of health care for the next five years. 

4 Although the legislation does not go into effect until 

5 July 1, 2011, money spent on outreach now would be much 

6 more effective if some funding were available prior to 

7 the upcoming 10-year anniversary of the terrorist 

8 attacks. Only now are some members of the survivor 

9 community beginning to understand the correlation 

10 between their exposure to World Trade Center 

11 contamination and its health impacts. Community-based 

12 education and outreach is a key to success, especially 

13 to diverse community that is somewhat cynical after all 

14 they've been through after the past nine and a half 

15 years. I want you -- to point out, this is the EPA 

16 building, right here, for region two, right across 

17 through the shades there.

18 We request that there is a special emphasis on outreach 

19 to children that have become adolescents or young 

20 adults. On September 11, 2001 about 25,000 children 

21 were living or attending school in lower Manhattan in 

22 close proximity to the World Trade Center, but they 

23 comprise only a very small portion of the World Trade 

24 Center health registry besides the World Trade Center 

25 health registry findings that there's not as much 
25

1 research as we'd like about the impact of 9/11 on 

2 children, a particularly vulnerable population. The 

3 limited studies that have been performed, such as those 

4 cited by the New York World Trade Center Medical Working 

5 Group, 2010 annual report on 9/11 health, suggest that 

6 elementary school children could be more at risk of 

7 respiratory illnesses.

8 We are also concerned about the conditions that may 

9 affect survivors more because of gender -- we're worried 

10 about gender and age may not adequately represent the 

11 responder population that has been studied. Therefore 

12 we urge the science advisory committee to take steps to 

13 address the unique needs of children as adolescents and 

14 women. To date, most studies have focused on first 

15 responders, and not others who continue to live and work 

16 downtown in the aftermath of September 11th attacks. 

17 There's no monitoring program for survivors and women in 

18 the World Trade Center health registry. It was 

19 voluntary for people who lived, worked or went to school 

20 in the area of the World Trade Center disaster. 

21 Therefore any disease that is included for responders 

22 should be included for survivors as well. How the data 

23 collection analysis portion of the survivor program will 

24 be implemented is also important.

25 The diseases and conditions covered in the recent 
26

1 legislation need to be expanded. At this time the 9/11 

2 Health and Compensation Act does not include cancer in 

3 the list of World Trade Center-related health conditions 

4 defined diseases. The addition of cancer to the list of 

5 approved diseases needs to be expedited, especially 

6 those cancers that are strongly correlated to 

7 environmental exposure through the inhalation, ingestion 

8 and other exposure to carcinogens.

9 We are concerned with the long lag time between disease 

10 diagnosis, data collection, research and approval. For 

11 example, the most recent data on the New York State 

12 Department of Health cancer registry web site is from 

13 2007. A three-year delay in information relating to 

14 cancer is not acceptable since such a gap in medical 

15 knowledge could be the difference between life and 

16 death.

17 Thank you very much.

18 MR. ELLIOTT: Thank you, Catherine. And now we'll have 

19 David.

20 DR. PEREZANT: Thank you for the time to speak today. 

21 Can people hear me? Dr. David Perezant, New York City 

22 Fire Department. Good to see my friends out in the 

23 audience, and nice -- and good to see you, Dr. Howard, 

24 as well.

25 When 9/11 occurred we realized here in New York City 
27

1 that we needed federal assistance, but that this 

2 disaster, this emergency, this attack was on us. It was 

3 on us, the citizens of New York City, the people of New 

4 York City, firefighters, cops, community, et cetera.

5 We grouped together and we developed a local health care 

6 response to this problem, and we have been thankful to 

7 NIOSH for their assistance every step of the way. And 

8 we are glad that NIOSH will continue in that role in the 

9 Zadroga legislation.

10 What we are afraid of is that now an immense federal 

11 bureaucracy will steal patient care dollars. This was 

12 never meant to happen. There is not an unlimited pie. 

13 There is a specific amount of money that was put in the 

14 Zadroga Bill that cannot be increased, and therefore 

15 every administrative dollar takes away from a patient 

16 dollar.

17 Now I'm not naive. I run a large program. I understand 

18 that you can't have a program without excellent 

19 administration oversight, and I applaud you -- all 

20 right? -- for thinking about how to achieve that, 

21 because it will only make patient care better. So naive 

22 I am not.

23 However, I am extremely concerned that in your effort to 

24 achieve this -- all right? -- it will wind up becoming a 

25 bloated, expensive bureaucracy, a bureaucracy that 
28

1 spends a fortune on compliance and audits -- all things 

2 that need to be happen, but they can be happened at a 

3 proper level rather than at an extreme level, stealing 

4 patient care dollars.

5 Specifically, I am immensely concerned about the 

6 administrative contract proposal that went out last week 

7 with very little knowledge to any of the participants. 

8 An administrative contract proposal that, 

9 understandably, needs to be written in a broad way, but 

10 that, if interpreted the way it is written, it 

11 specifically states that 290,000 contract hours per year 

12 can be spent on administrative oversight issues.

13 Now that is a huge amount of money. If we were to just 

14 do some simple multiplication at $100 an hour, that 

15 would be $29 million per year. If we were to do it at 

16 $50 an hour, that would be $15 million a year. And both 

17 of those costs per year -- all right? -- exceed the 

18 costs of every -- of nearly every one of the clinical 

19 centers and of each of the data centers. It also 

20 exceeds the cost of what is allocated for the data 

21 centers in the current Zadroga Bill.

22 Now that makes no sense, so there's -- needs to be some 

23 happy medium. I understand that it can be said to us 

24 that that contract proposal merely set up parameters and 

25 that there's no intention to come anywhere near those 
29

1 hours. But I've never seen a contract proposal that 

2 doesn't come near, or even exceed, the hours. So I am 

3 very concerned. Because let us not be mistaken, this 

4 money is not going to come from a different pot. This 

5 money is coming from patient care dollars. And while we 

6 are all here, while we are all here worrying about every 

7 little thing, behind the scenes this is an effort that 

8 can dramatically change health care.

9 And there are other examples of this, because this is a 

10 local health care emergency and it is a local response, 

11 with federal assistance. For example, outreach, 

12 retention, getting new patients, keeping patients --

13 that is a local response. That cannot be nationalized. 

14 That cannot be outsourced to some company that sits 

15 somewhere. We have clear knowledge that when we call 

16 patients and remind them of appointments, if it doesn't 

17 come from a 718 or 212 phone number exchange, they often 

18 don't even pick up the phone. All right? That's an 

19 example of how outreach and retention must be local.

20 We also have clear knowledge that even when we outsource 

21 it local to our own patients, if they don't recognize 

22 our phone number, they won't even call up the phone --

23 pick up the phone. So there's a -- there's a certain 

24 amount of distrust that needs to be understood in this 

25 program.
30

1 And then finally, any concept of removing research from 

2 the data centers needs to be eliminated. Research is 

3 not a four-letter word. Research is not guinea pigs and 

4 experiments. Research is being able to answer the very 

5 question that was raised here today, and is: Is cancer 

6 a problem? All right? And I can tell you that science 

7 will have that answer for you. And I can tell you that 

8 science will have that answer for you a lot sooner than 

9 you may think. All right? And it is only because the 

10 clinical centers, the data centers and the science are 

11 married that every one of our patients is getting state 

12 of the art care -- all right? -- and has a chance for 

13 real, honest disease surveillance.

14 I thank you.

15 MR. ELLIOTT: Thank you, Dr. Perezant. Rich Volpe, 

16 followed by T.J. Gilmartin, and then Keith LeBow.

17 MR. VOLPE: Good morning, everybody. First I'd like to 

18 thank Dr. Howard and Mr. Elliott for taking time out of 

19 their busy schedule. I'm not going to take a lot of 

20 your time. I don't want to reiterate everything that a 

21 lot of people here are saying.

22 I was a New York City detective. I spent over six 

23 months down at Ground Zero working on the pile, doing 

24 escorts, working with the Port Authority, all different 

25 -- I was on every aspect of the location.
31

1 My concern is there's a lot of people like myself that 

2 are diagnosed with illnesses that are not being 

3 recognized by whoever the people are doing these 

4 studies. Prior to 9/11 I was a healthy -- healthy 

5 person. I went to the gym five to six times a week, 

6 didn't spend much time with doctors. After 9/11, now 

7 I'm seeing nephrologists, I'm seeing pulmonologists, I'm 

8 seeing endocrinologists, I'm seeing pulmonologists, I'm 

9 seeing ENT doctors -- I have all different ailments. My 

10 main ailment is kidney disease, which is going to 

11 eventually lead me into full kidney failure. My disease 

12 is not being recognized, and my concern is that it's not 

13 going to be.

14 All I can say here is ask you, Doctor, and everybody 

15 involved here to please look outside the box and realize 

16 that there are a lot of different ailments out there 

17 that we're not -- that we're not recognizing. And 

18 that's my only concern.

19 I appreciate your time.

20 MR. ELLIOTT: Thank you, Rich. T.J. Gilmartin?

21 MR. GILMARTIN: Good morning. Good morning, Mr. 

22 Elliott; Dr. Howard, thank you. I'm going to be two 

23 minutes here. My name is T.J. Gilmartin. I'm 31 years 

24 working with the cement union, building high rises in 

25 Manhattan. And the two points that I want to make about 
32

1 being in the construction business, I know every 

2 fluorescent light bulb has mercury in it. I haven't 

3 heard anything about this. Everybody's saying that 

4 cancer's not part of this. I know the federal 

5 government recognizes mercury as a cancer-causing agent. 

6 You had 220 floors of fully-lit merc-- fluorescent light 

7 bulbs in all those buildings. I mean -- so that -- it 

8 just baffles me when the federal government can turn 

9 around and say that mercury is cancer-causing, you can't 

10 be near it. You had two towers at 110 stories each that 

11 came down, 50,000 square foot floors each, trading 

12 floors with full fluorescence like these (indicating) --

13 how much mercury is that, all breaking at one time? You 

14 know, so there's your relation to cancer.

15 And the only other point I want to make relates 

16 something to what the doctor's saying, you know, in the 

17 realm of these fakes, everybody that's latching onto the 

18 9/11 Zadroga Bill. All of a sudden, everybody was down 

19 there -- you know, whatever. I just hope somehow that 

20 they set up some kind of commission -- I mean all this 

21 money's being spent from the federal government, borrow 

22 a -- borrow an FBI agent or something, or a couple or 

23 two; pay them out of our money and get these fakes, you 

24 know, and the frauds out of this money.

25 That's all I have to say. Thank you.
33

1 MR. ELLIOTT: Thank you, T.J. Now we have Keith LeBow 

2 and Mike -- or excuse me, Marc Brandell and Ann Baumann.

3 MR. LEBOW: Gentlemen, thank you for having me here 

4 today. Like Mr. Ryder said earlier, one of his friends 

5 has an issue with his skin. I'm one of those people. 

6 As you can all see, I rubbed the dust into my leg when I 

7 was standing on the pile. That was only the beginning 

8 of my problem. My biggest problem, though, is the heal9 - is the medical program itself, Health Care for Heroes. 

10 It's not health care, and it's not helping heroes.

11 We get to a certain point with our illnesses, and they 

12 turn around and they tell us "Well, we can't figure out 

13 if it's 9/11-related or not." They cut you loose. 

14 They leave you to go -- and go somewhere else.

15 Now they did this to me in August. I am now probably 

16 several years behind. I have to start all over again, 

17 and this is costing me not only time, it's costing me my 

18 health. I've been told by doctors that I have very 

19 little time left. I have maybe three years now. I was 

20 told two years ago, a week before my birthday, I'm lucky 

21 if I make it to 50. I'm going to make it to 48 now, I 

22 know that much is sure because I've got three months to 

23 my birthday. But I don't know if I'm going to make it 

24 to 50 because I have to stop what I'm doing and 

25 constantly go to the doctors and have the doctors re-
34

1 diagnose the same thing that they were doing for the 

2 Trade Center program. This puts me back several years. 

3 This is not going to help me.

4 I need help now. I've gone to Dr. Melius and pleaded 

5 with him to help me. I -- my prayer -- my pleas fall on 

6 deaf ears. I'm getting nowhere. I mean I -- I'm now 

7 going to have to find a way to start paying for all of 

8 these doctors that I can't afford to get them to help 

9 me, to try to save my life.

10 Now I know I'm not the only one this is happening to. I 

11 know that both Bellevue and Mount Sinai pick and choose 

12 who they want to help. When you -- like I said, when 

13 you get to a certain point, they just throw their hands 

14 up and use the statement "We can't figure out what's 

15 wrong with you; we don't know if it's 9/11-related." 

16 And that's the end of your care.

17 Some-- there's got to be some kind of oversight 

18 committee that will actually protect everybody involved 

19 because, you know, I don't want to be another fatality. 

20 I want to live. I want to be an old man. You know, I 

21 want to grow up, I want to have kids. With this going 

22 on now, that's not a possibility. That's already been 

23 taken away from me.

24 I was a volunteer there. I spent the first 100 hours on 

25 the pile. If I knew then what I know now, I would have 
35

1 stood and let the buildings hit me because I can't take 

2 much more of this. I -- I wake up in the middle of the 

3 night, my bed full of blood. My nose -- it's just 

4 pouring from my nose. I get violent headaches. I was 

5 told that I recently had either a stroke or a seizure in 

6 my sleep that almost took me out. In the past three 

7 weeks I've been to the doctor's four times and then to 

8 the ER four times 'cause I can't breathe anymore. And 

9 I'm having people tell me "There's nothing wrong with 

10 you." They're looking at the -- they're looking at the 

11 outside of me. They're not looking at what the hell I'm 

12 going through on the inside.

13 I -- there were days I can't even get out of bed, and I 

14 -- I know I'm not the only one with this. There's a few 

15 people probably here today that it's so bad, to move is 

16 excruciating pain.

17 I had somebody rec-- a doctor recently want to put me on 

18 -- he wanted to put me on methadone. There's no way I'm 

19 taking that stuff. That's a life destroyer. My life is 

20 gone enough; I don't want to go any further.

21 But you guys, please, we have the Bill now, it's an Act. 

22 We got to have the right thing, the right people in the 

23 right places to actually take care of all of us because 

24 without this, people like me -- you're going to see us 

25 more and more and more in the papers. There's going to 
36

1 be more deaths, and they're not going to -- they're not 

2 -- nobody's going to accept responsibility. They're 

3 just going to say "Well, hey" -- I mean look at Cesar 

4 Borgia, he was told all he had was a chest cold. He had 

5 cancer and died of lung cancer, and that was done by 

6 Bell-- by Mount Sinai. I mean to have somebody say to 

7 you "Please help me, please" over and over again, and to 

8 ignore them, and be a doctor? That's not the oath of 

9 Hippocrates. That's the oath of hypocrisy right there. 

10 That's turning around and saying you won't -- you won't 

11 allow harm to come to another person, but then turn 

12 around and stab them right in the back.

13 We need help now. Thank you.

14 MR. ELLIOTT: Thank you, Rich. Now we have -- or Keith, 

15 I'm sorry, Keith. And now we have Marc.

16 MR. BRANDELL: Is this good? Everybody can hear me? 

17 Closer? Better? Okay.

18 First I would like to thank Mr. Elliott and Dr. Howard 

19 for taking their time to hear us today, and everybody 

20 else for coming.

21 My name is Marc Brandell, and I'm the supervising 

22 pharmacist of Madison Avenue Pharmacy. I'm here to 

23 speak to you today about New York City and the Mount 

24 Sinai Hospital responder patients and how the Zadroga 

25 9/11 Bill Health and Compensation Act may affect them.
37

1 Madison Avenue Pharmacy is one of two independent 

2 pharmacies that currently fill prescriptions for the 

3 World Trade Center responders that are seen at Mount 

4 Sinai World Trade Center treatment and monitoring 

5 program. We've been serving this unique population 

6 since 2003. In fact, it was called the Healthy Heroes 

7 program and was solely funded by Bear Stearns. We were 

8 the only pharmacy filling prescriptions for the World 

9 Trade Center responders at Mount Sinai.

10 When we first started supporting this program, we filled 

11 approximately ten prescriptions a month. As the program 

12 has grown over the years, we now fill over 3,000 

13 prescriptions a month. In fact, we fill prescriptions 

14 for over 25 percent of the 16,000 responders that are 

15 undergoing treatment. This is an impressive number 

16 considering that these patients have the option of 

17 filling their prescriptions with us or at a local retail 

18 chain that has over 250 locations in the New York City 

19 vicinity.

20 Madison Avenue Pharmacy is located one block from Mount 

21 Sinai Medical Center. This close proximity has forged a 

22 strong relationship between our pharmacy and the medical 

23 center for nearly 11 years prior to the 9/11 tragedy. 

24 This relationship was built on an outstanding service, 

25 our knowledge and commitment to the patients and other 
38

1 health care providers. When the responder study started 

2 in 2003 and the hospital needed a pharmacy to fill 

3 prescriptions, we were the hospital's first choice. As 

4 a member of the community, we felt supporting this 

5 important effort was our obligation, and we were only 

6 too happy to help.

7 So, after seeing their doctors at the hospital, the 

8 patients from the study would literally walk across the 

9 street, they would fill their prescriptions. As the 

10 program expanded over the years, so have our services. 

11 Now if the patient can't make their appointment to see 

12 the doctor, we pick up the prescriptions from the 

13 hospital and fill them. If the patient is unable to get 

14 to the pharmacy to pick up their prescriptions, we mail 

15 them directly to the patient's home. We do not charge 

16 for this service, and we currently mail over 50 packages 

17 a day.

18 We run a 100 percent transparent pharmacy benefit 

19 administrator -- let me reiterate that, a 100 percent 

20 transparent pharmacy benefit administrator -- to 

21 electronically adjudicate all prescription claims that 

22 are filled for the Mount Sinai World Trade Center 

23 treatment and monitoring program. The administrator 

24 that we have contracted with to process these 

25 prescription claims has the ability to meet and exceed 
39

1 the pharmacy processing and reporting requirements that 

2 are outlined within the Zadroga Act. This includes the 

3 transmission of data to a data center in any format that 

4 is required.

5 When the program was developed it was designed as a 

6 study to the effects -- to study the effects of the 

7 toxic dust on the responders. As a result, medication 

8 compliance became critical to the findings of the study. 

9 This prompted us to start a program that we -- that 

10 where we now call patients to remind them to fill their 

11 prescriptions.

12 To sum it up again, along with our standard pharmacy 

13 services, Madison Avenue Pharmacy picks up prescriptions 

14 from the hospital, calls patients to remind them to 

15 refill their prescriptions, mails out prescriptions to 

16 patients who are unable to pick them up, and runs a 100 

17 percent transparent pharmacy benefit administrator that 

18 has the ability to meet the challenges of the changing 

19 market. And we do all this for a reimbursement rate 

20 that is less than the New York State Medicaid 

21 reimbursement rate.

22 The standard of needs of the patients through constant 

23 and open communication, coordinating and meeting with 

24 Mount Sinai Medical Center staff, picking up and mailing 

25 prescriptions, as well as other pharmacy services such 
40

1 as respiratory aids, home health aids and surgical 

2 supplies, has resulted in a level of care and services 

3 that these patients have come to rely on -- and frankly, 

4 one that they deserve.

5 The James Zadroga 9/11 Act -- Health and Compensation 

6 Act of 2010 requires a competitive bidding process in 

7 order for a pharmacy to secure a pharmacy services 

8 contract. While we understand the bid process is a 

9 necessary tool, we are very concerned that a small 

10 independent pharmacy such as Madison Avenue Pharmacy 

11 does not have the national experience necessary to bid. 

12 With all the services we provide, we have proven that we 

13 can compete -- and surpass -- with the nationally 

14 recognized pharmacy benefit managers such as Medco, 

15 Express Scripts and CareMore. We feel strongly that 

16 excluding us from a pharmacy service contract would have 

17 a negative an unnecessary impact on these patients.

18 With the passage of this bill into law, these patients 

19 may lose their relationship with Madison Avenue 

20 Pharmacy. Instead of continuing to be serviced by a 

21 pharmacy that these patients know and trust, they'd be 

22 subject to an impersonal, mail order telephone customer 

23 service representative who is employed by an uncaring 

24 pharmacy benefit manager that cares more about wealth 

25 care than health care.
41

1 In closing, we ask that you give the small, local, 

2 independent pharmacies that have already proven 

3 themselves to this community the opportunity to continue 

4 to serve its patients. We have and will continue to 

5 support and care for them in a way that nobody else can 

6 or will.

7 Thank you.

8 MR. ELLIOTT: Thank you, Marc. Ann Baumann, and then we 

9 have Glen Klein, Alex Sanchez and Anthony -- Flaminia?

10 UNIDENTIFIED: Flammia.

11 MR. ELLIOTT: Flammia?

12 UNIDENTIFIED: Flammia.

13 MR. ELLIOTT: Sorry, I apologize for butchering that 

14 pronunciation.

15 MS. BAUMANN: Okay, my name is Ann Baumann -- all right, 

16 I'm short. Is that better? Okay.

17 My name is Ann Baumann. I am the outreach coordinator 

18 for Tuesday's Children, the First Responder Alliance, 

19 and a senior vice president of the FealGood Foundation 

20 for the past six years.

21 With that said, I deal with many responders, including 

22 my own husband, NYPD police officer Christopher Baumann. 

23 He was a first responder and he was hurt severely on 

24 that day. He never returned after the 11th. His issues 

25 mound every day.
42

1 One of the issues that we had in my family really quick 

2 was that my husband, after 9/11, tried to shoot a plane 

3 down in the front of my house with a loaded revolver as 

4 soon as the planes started to fly again -- I think that 

5 was on the 15th. Shortly after that, he tried to kill 

6 himself, twice. Shortly after that the family structure 

7 collapsed. Not only my family, but it's in families, 

8 and my 11-year-old son tried to kill himself, tried to 

9 throw himself off of the school building. They caught 

10 him climbing up the building.

11 Obviously they were diagnosed with PTSD. I deal with 

12 over a thousand responders between the FealGood and 

13 between First Responder Alliance. I cannot tell you, I 

14 cannot count on my hands, how many of them have had to 

15 go -- be taken away, grown men and grown women, taken 

16 away by a police officer because they, too, at 4:00 

17 o'clock in the morning, have decided that they also want 

18 to kill themselves.

19 We urge NIOSH to advise the U.S. Department of Justice 

20 that post-traumatic stress be included. In 2006 the 

21 Surgeon General recognized PTSD as a physical injury 

22 because of the stress that it causes mentally and 

23 physically on the body -- heart, there's a hand-- the 

24 heart, just -- you're fatigued, the neurological. The 

25 yet-to-be-appointed special master of the Victim's 
43

1 Compensation Fund should recognize PTSD as a separate 

2 compensatable (sic) condition.

3 There's many other diseases that I do have the 

4 unfortunate opportunity to deal with. One of them is 

5 kidney disease. Kidney disease can lead to cancer, 

6 resulting in kidney failure and need for dialysis and 

7 kidney transplant. This we know: that heavy metals are 

8 filtered through the kidneys. This is a fact we all 

9 know about. Therefore it's not surprising that we have 

10 seen an increased rate of incidence in kidney ailments 

11 within the 9/11 community.

12 Another ailment is neurodevelopmental disorders. 

13 There's a results -- study linking in utero exposure to 

14 mild and moderate neurological development problems.

15 Thyroid disorders -- it starts out as a diagnosis and it 

16 ends ending up in cancer in -- in exuberant amounts, and 

17 I only deal with about a thousand of these people.

18 Neurological disorders, immunological disorders, 

19 inflemary (sic) and connective tissue disorders, the 

20 blood disorders and the skin diseases are popping up 

21 like crazy. It's not just one, it's -- it's -- it's not 

22 just one person. It's an over-exuberant amount.

23 Ten minutes -- ten years in five minutes; this is hard, 

24 definitely.

25 All right. Current research gaps that -- that we have 
44

1 come to recognize is that research non-covered 

2 conditions emerging at increasing rates are including 

3 research reproductive abnormally -- abnormalties (sic) 

4 such as early sterility, infertility, early menopause, 

5 early gestation pregnancy, and low birth weight in 

6 babies. It's affecting a lot more than anybody's aware 

7 of.

8 And now I'm at my end because I see my little red light.

9 We know from various 9/11 organizations, including 

10 family groups, that as we approach the tenth anniversary 

11 more people are coming forward for the first time 

12 looking for services. Some organizations are now seeing 

13 a different population surfacing than their primary 

14 target, and it is changing. It changes weekly. Example 

15 is the media who worked at various sites, people who 

16 live outside the New York metro area, and people who 

17 live locally, but -- they're all now seeing problems 

18 with their families.

19 Much of this new population is looking for mental health 

20 services through som-- though some are looking for 

21 medical services as well. Sorry about that. We're 

22 concerned that the Act will not meet the needs of this 

23 population, and we will consider them part of the 9/11 

24 community, and we want to make sure that their needs are 

25 addressed, because it is severe.
45

1 The outreach for the clinical centers and data services 

2 should utilize programs conducted by trusted community 

3 and labor-based groups with established rapport with 

4 these 9/11 responders and the populations of the 

5 survivors.

6 And I thank you for your time, and have a good day.

7 MR. ELLIOTT: Thank -- thank you for those comments, 

8 Ann. And now we'll hear from Glen Klein, followed by 

9 Alex Sanchez, Anthony Flaminia (sic) and Steven --

10 Cholinski?

11 MR. KLEIN: Good morning. Thank you for being here. 

12 Thank you -- thank you, everybody, for being here. My 

13 name is Glen Klein. I'm a retired NYPD detective. I 

14 was assigned to the emergency services unit on 9/11. We 

15 lost 14 of our guys on that day. I was at Ground Zero 

16 for over 800 hours, and I retired in 2003 due to 9/11-

17 related illnesses. I had planned to do 30 years. I 

18 left a job that I loved dearly because of 9/11-related 

19 illnesses.

20 About four years ago while seeking assistance I found a 

21 group called the FealGood Foundation, which I know 

22 everybody here is familiar with. They asked me to 

23 become a board member, and I did. I'm currently still a 

24 board member, and I spent hundreds of hours in 

25 Washington, DC fighting to get the Zadroga Bill passed.
46

1 I'm also part of the Zadroga Action Team -- which for 

2 those of you who came late and don't know what that is, 

3 basically the best way to explain it is we're going to 

4 be an oversight to the oversight. We're going to make 

5 sure that all the money that is allotted to us by the 

6 government is used correctly, and is not squandered away 

7 on a hospital that needs a new parking garage.

8 Couple of the other issues are the attribution of 

9 illness to World Trade Center exposure. We ask NIOSH to 

10 use the same approach as the New York City uniformed 

11 services for everybody -- NYPD, the FDNY, sanitation, 

12 and the survivor group, the civilians that lived down 

13 around Ground Zero and the students who went to school 

14 down there.

15 In 2005 Governor Pataki signed into law the World Trade 

16 Center Presumption Bill. The bill states that if you 

17 were healthy before 9/11 and you worked at Ground Zero, 

18 any of the morgues, the barges, the Staten Island 

19 landfill, and you became sick later on, it is presumed 

20 that your illness was from your exposure to toxins at 

21 any of those sites, until proven otherwise by a medical 

22 professional. The onus is supposed to be on the medical 

23 professional, not the sick responder or the sick 

24 civilian who lives down around Ground Zero. We feel 

25 that the guidelines -- or similar guidelines should be 
47

1 in place for everybody.

2 As a side note, and I don't know if this has anything to 

3 do with NIOSH, but as a New York City police officer, 

4 and I'm sure there are other ones here in the audience, 

5 that presumption bill that was signed into law in 2005 

6 by Governor Pataki is something that is not being 

7 adhered to by the NYPD medical unit over at One Lefrak 

8 Plaza, and we need to get something done about that. 

9 They continually deny police officers disability 

10 pension, and hundreds of sick police officers are denied 

11 over and over again by the medical board. This has to 

12 stop.

13 The next issue that I'd like to bring up is the next 

14 generation exposure, our children. We need to have 

15 research on the incidences of affected children of male 

16 responders whose partners conceived one or two, or even 

17 several, years after the men were exposed to the toxins 

18 at Ground Zero. We're hearing of many cases of children 

19 -- responders -- I'm sorry, responders of chil--

20 children of responders with asthma, sleep apnea, ADD and 

21 severe ADHD, which is near and dear to my heart because 

22 I have a 6-year-old son at home with severe ADHD. My 

23 son has been on at least six different medications, and 

24 not a day goes by when my wife and I don't get called by 

25 the school about his behavior. There's no history of 
48

1 ADD or ADHD in my family whatsoever. It may not be 

2 because of Ground Zero, my exposure to Ground Zero, but 

3 it may be, and it needs to be looked at. I know I'm not 

4 the only case.

5 And the next important issue is participant care and 

6 communication. There needs to be an intercommunication 

7 among the Centers of Excellence. They need to share 

8 information. At the very least, this makes for more --

9 more thorough medical monitoring. Presently an illness 

10 that is covered at one Long Island center may not be 

11 covered at Mount Sinai or Robert Wood Johnson in New 

12 Jersey. The same goes for prescribed medications. 

13 People are covered at some clinics and they're not 

14 covered at other clinics. There needs to be one 

15 standard of care for all the treatment centers, and that 

16 includes LHI, which treats the out-of-state responders.

17 We also need a national information sharing system to 

18 better serve the responders who came to New York to 

19 assist us on 9/11, and those who moved out of state 

20 after 9/11. We have no way of knowing how many of these 

21 people may have died already because of their exposure 

22 to 9/11, and they might not even know that they died 

23 because of exposure to 9/11. This system, if put in 

24 place, would be vital in saving lives of those who no 

25 longer live in New York and are being treated by 
49

1 hospitals outside of New York.

2 And I thank you very much for your time.

3 MR. ELLIOTT: Thank you, Glen. If -- just a note here, 

4 if you haven't signed up and you would like to speak, 

5 please see the ladies in the back of the room and get on 

6 the speakers' roster.

7 Now we'll hear from Alex Sanchez, followed by Anthony, 

8 and then Steven. Thank you.

9 MR. SANCHEZ: Good morning, ladies and gentlemen, and 

10 thank you for being here today. First and foremost I 

11 would like to thank Dr. (sic) Elliott and Dr. Howard. 

12 Dr. Howard, you have truly live up to your name these --

13 after all these years, our 9/11 czar under the Bush 

14 administration and once again director of these programs 

15 under the Barack Obama administration.

16 My name is Alex Sanchez. I am a 9/11 responder. On 

17 September 11th I witnessed the gates of hell open. I 

18 was a very short distance from where we're standing 

19 today when the City of New York and our country came 

20 under attack. Two days afterwards, on September 13th, 

21 my coworker, Monroe Cheko*, who is here today, and I 

22 performed cleanup work in skyscrapers surrounding the 

23 pit, ten buildings altogether. Many of these buildings 

24 are considered on site, One, Two, Three World Financial 

25 Center.
50

1 Today we suffer from permanent total disability from the 

2 State of New York. At the mere age of 37 we were 

3 diagnosed with disease that we couldn't work any longer. 

4 These past seven years Mr. Cheko and I have been

5 advocating and educating two administrations, members of 

6 the House and the Senate, on behalf of the men and women 

7 who rushed to the front line to uplift a city and 

8 economy and a nation.

9 What we would like to see is the same quantity and 

10 quality of health care that we have been receiving at 

11 Mount Sinai these past eight years. No program is 

12 bulletproof, but we really believe these programs are 

13 very close to that.

14 As a director of United We Stand, which is a non-profit 

15 organization -- we are not a non-profit organization. 

16 It's merely two citizens, responders, attending to calls 

17 of other men and women who have been -- have come in 

18 direct contact with September 11th pollution and are 

19 sick, very much guiding them and -- and providing 

20 support.

21 The lack of information is as bad as no information 

22 whatsoever. My coworker and I truly understand that 

23 many who have been affected by September 11 pollution 

24 have yet to receive compensation -- worker's 

25 compensation. Under this recession, many of the sick at 
51

1 times don't have the $4.50 to go to the appointment and 

2 see their doctors. We would like to see the program go 

3 back to its roots and provide transportations for those 

4 who are sick. This way, if you do not have the $4.50 to 

5 go see your doctor and keep an appointment, you won't be 

6 able to miss out on your medical treatment.

7 We also would like to see a suggestion box at every 

8 doctor's office. I mean we cannot fit 30,000 people 

9 here today, so we can have patients write their names --

10 or do not write their names -- and very much come up 

11 with suggestions so we can make this program much 

12 better.

13 We also would like to see ID cards with medical history 

14 provided in them. Many, many patients do not live near 

15 Mount Sinai or other Centers of Excellence, and they 

16 have to go to other hospitals. And many of these 

17 doctors very much do not know where to start when a 

18 responder or -- or a resident or someone who very much 

19 was exposed is sick and they do not know what they're 

20 going through.

21 Another issue is many of these cancers are a reality to 

22 9/11 responders. For seven years we have been walking 

23 the halls of Congress. Many of the men and women who 

24 started this journey are no longer with us. And they're 

25 no longer with us today due to cancer. It's very hard 
52

1 to look into the eyes of spouses and children, and know 

2 that their parents and their loved ones are not here 

3 because they were exposed and have died due to cancer. 

4 Cancers are a reality among 9/11 responders and those 

5 who have been exposed.

6 I would also would like to thank President Obama for 

7 signing this bill. I would also would like to pay 

8 tribute to James Zadroga, Sr., an officer and a 

9 gentleman, raising his granddaughter due to September 

10 11th pollution; NIOSH, the AFL/CIO, (unintelligible) 

11 valentine, Mount Sinai for continuing to respond to the 

12 needs of responders; the FealGood Foundation, John Feal; 

13 Unsung Heroes Helping Heroes, Marvin Bathel*. These two 

14 gentlemens (sic) are my hero and my champion. Not only 

15 do they provide and assist responders, but they have set 

16 the blueprint so citizens like Mr. Cheko and myself can 

17 go out there and continue to do the same for a group of 

18 men and women that very much gave it their all. 9/11 

19 Environmental Action, Community Board One, DC 37, Lee 

20 Clark; and last but not least, Suzanne Montee, my 

21 mentor, we would never have gone upon this journey 

22 without meeting this woman.

23 Thank you so much. We will never forget, and may God 

24 bless the United States of America.

25 MR. ELLIOTT: Thank you, Alex, for those comments. 
53

1 Anthony?

2 MR. FLAMMIA: Good morning, gentlemen. Good morning, 

3 everyone. My name is Anthony Flammia. I was a police 

4 officer with the New York City Police Department, 

5 highway patrol unit. I, as many others, responded to 

6 this tragic day and fallout from this tragedy, not 

7 realizing what we were going into but responding to all 

8 in need that day. My service at Ground Zero was for 

9 over 200 hours, with various assignments within the 

10 police department, which exposed me and others to the 

11 toxic site which brings us here today, standing in front 

12 of you.

13 I am asking you to listen, and take into account what we 

14 all have been through and have suffered due to the 

15 exposure. As a result of the attacks and subsequent 

16 exposure, I was medically retired from the police 

17 department on September 8th, 2008 due to my injuries 

18 sustained at the World Trade Center in 2001. My 

19 injuries include GERD, reactive airway disease, 

20 obstructive sleep apnea, sinusitis, rhinitis, various 

21 kidney dysfunctions, costochondritis, various 

22 musculoskeletal disorders, and other minor skin 

23 conditions; constant feeling of sickness, numbness and 

24 disorientation; and finally, post-traumatic stress 

25 disorder with delayed onset, which is so severe that I 
54

1 often black out from when I -- from -- when I go from 

2 point A to point B and not realize how I got there.

3 My injuries started off with mild symptoms, and many 

4 issues came on more severe as the years went on. The 

5 World Trade Center monitoring center needs to be 

6 patient-centered and developed in a way that promotes 

7 the well-being of the patient, and all should be treated 

8 with dignity and respect.

9 We are concerned that integrative treatment and 

10 alternative medicine will not be covered in this Act. 

11 Many have developed chronic illnesses, and have reached 

12 the point where their health is no longer improving. 

13 They have reached the maximum medical improvement. 

14 Alternative therapies have reported that the pursuit of 

15 integrative medicine has improved their health and 

16 quality of life with these alternative therapies.

17 A stand-fast commitment must be made to research funding 

18 for the treatment for the World Trade Center illnesses. 

19 Gentlemen, I offer the following explanation for you all 

20 to think about. The medical and scientific communities 

21 have not seen anything like the fallout from 9/11 in 

22 history. Medically, we need to think and treat outside 

23 of the box, and reach beyond the current band-aid 

24 approach. In the current system first responders are 

25 treat-- are being treated for symptoms. In many cases 
55

1 the root causes are not being addressed. Toxic 

2 exposures, complications from medications, and 

3 structural abnormalities are going untreated. There is 

4 a need for an integrative medical monitored approach.

5 This is not a self-administered or alternative approach. 

6 The integrative model looks at the patient in a 

7 comprehensive manner. Signs, symptoms, medical history, 

8 extensive blood work and tests, medication history 

9 supplements lifestyle, diet and mental state. It is 

10 needed to put together a successful treatment plan that 

11 targets the root causes of illnesses and advocates for 

12 the patient. The integrative model embraces the 

13 traditional medical model and opens up to additional 

14 treatment options such as medical acupuncture, 

15 nutraceuticals and nutrition, osteopathic manipulations, 

16 detoxification programs, and injection therapies. We 

17 need to look at how various medications are interacting 

18 with one another, and their compounded side effects and 

19 complications.

20 Many first responders are on up to 40 medications daily. 

21 That's unacceptable. This is not helping them to 

22 improve their health, and it's a huge financial burden, 

23 especially when their regular insurance would cover the 

24 medications. These therapies have improved many of my 

25 other conditions, as well as has offered some pain 
56

1 relief. As I progressed and completed my treatment, I 

2 feel better than when I came into the doctor's office on 

3 a -- when I do go to the doctor. These treatments 

4 relieve several of my physical and overall mental 

5 symptoms. It is not acceptable that we are told at the 

6 Centers of Excellence that they are offering some 

7 alternative means of treatment, and there are only a 

8 couple of slots open for responders.

9 On the advisory panel we were told some methods are 

10 being explored and offered. A couple of spots for a 

11 thousand people -- not acceptable.

12 Please accept these explanations and re-evaluate the 

13 current treatment at the Centers of Excellence to direct 

14 some of the funding for this.

15 Thank you, gentlemen.

16 MR. ELLIOTT: Thank you, Anthony, for those comments. 

17 Steven Choinski? Followed by William Moore, then 

18 Michael McPhillips.

19 MR. CHOINSKI: Thank you. I came here originally -- I'm 

20 a member of the FealGood Foundation. I have nothing --

21 I'm sorry, I'm sorry -- I have nothing rehearsed; this 

22 is all from the heart. Okay?

23 I came here to take notes. I didn't know I was going to 

24 speak today. All I was -- I was going to put my suit 

25 and tie on and shave (indiscernible). Thank you.
57

1 Okay. In all seriousness, from the heart -- okay? In 

2 1982 I went to college and I graduated from Brockport 

3 State, I was a social work major, and I worked with 

4 outpatient Viet Nam veterans, and I'm going to get to 

5 9/11 and a little correlation here. Okay? I sat at a 

6 little table, I was a little social worker in front all 

7 the head of psychiatry and all the medical -- and I did 

8 a term paper on Agent Orange. And they all said oh, 

9 they're never going to pay out for the veterans. We're 

10 never going to pay out blah, blah, blah, blah. And I 

11 sat at the end of the table, I was a little -- little 

12 puke there, and I said oh, your little bureau-- your 

13 little liberalism ideas as a little college student is 

14 never going to pass.

15 Ten years later I'm driving in my police car around 

16 Manhattan and I see this zipper -- VA Administration, 

17 federal government settle large lawsuit with Viet Nam 

18 veterans for $55 billion -- whatever the amount is. Ten 

19 years later they paid out for these people. A lot of 

20 them suffered and they died, and it was just the idea of 

21 how long they had to wait to get treated.

22 Now I have no cancer, not at all. I have no ax to grind 

23 with cancer. These people out here with cancer, my best 

24 friend in the police department, Rich Ruggerio, who 

25 cannot make it today, he's very sick, has cancer. He 
58

1 had throat cancer. He's in recovery.

2 Okay, my point is I get on this FealGood Foundation bus 

3 every day for the people who can't make it on that bus, 

4 who are already sick or died. I sit next to widows and 

5 orphans from every trade -- construction workers to 

6 firemen to policemen to cleanup workers, whatever they 

7 are. I get on that bus and I get sick when I come home 

8 because that -- those kids that don't have a mom and dad 

9 could be me tomorrow. They need treatment.

10 Last I heard there's this place called Sloan-Kettering. 

11 It's one of the finest cancer hospitals in the world. 

12 They said they're ten years ahead of everybody else in 

13 the world. Anybody who knows anything about cancer 

14 comes here, stays in the hotel across the street and 

15 goes to Sloan-Kettering because we are the leaders of 

16 the world. And this is not a knock on Sinai, I love 

17 Mount Sinai. I think it's one of the greatest places in 

18 the world to get treatment. I live in Long Island and I 

19 come to Mount Sinai 'cause I want to live, because I 

20 have my own issues with illnesses. But that -- it's not 

21 about me. This is about people with cancer I'm trying 

22 to speak for.

23 Okay? I just lost my train of thought for a second, I'm 

24 sorry.

25 So that's what I want. I want Mount Sinai to 
59

1 coordinate, along with the federal funding, to get 

2 Sloan-Kettering involved. And then when we do come out 

3 with this list of cancers -- and like the detective that 

4 was up here before and he talked about cancers that we 

5 don't know about, or minute, they're coming out -- we 

6 were all poisoned down there, everybody who worked down 

7 there, from A to Z, was poisoned. We were poisoned. We 

8 had paper masks or no masks at all and that's why we 

9 were poisoned, because we didn't stand a chance. Okay?

10 Let's not learn the hard way through example, through 

11 life and history like Viet Nam veterans. Let's get the 

12 aid, let's get the money, and let's help these people 

13 with cancer before they all perish. Let's give them 

14 help what they need now and let's -- let's get Sloan15 Kettering going, and let's Mount Sinai and -- and the 

16 doctors of the world and the administrators of the 

17 world, and let's get the money to the buck and let's get 

18 it going.

19 Thank you. Thank you.

20 MR. ELLIOTT: Thank you, Anthony, and now we have Steven 

21 -- or that was Steven, sorry. Now we have William --

22 William Moore.

23 MR. MOORE: Good day. Thank you for letting me speak. 

24 My name is William Moore. September 11th, 2001 was a 

25 horrific day of -- for America. According to the 9/11 
60

1 commission report it was a day of unprecedented shock 

2 and suffering in the history of the United States. To 

3 address the uncertainty about the short and long-term 

4 effects on our country and the rest of the world, 

5 miscalculated steps were taken to minimize our exposure 

6 and vulnerability to our country. These miscalculated 

7 steps were supposedly taken to protect us as a nation. 

8 This protection would require individual sacrifice, some 

9 knowingly and some not. Many on that day were willing 

10 to make that sacrifice, and others had no choice.

11 Many believed that on that day, and the weeks following, 

12 we came together in unity as a strong nation. But as 

13 time passed over the years, we have found out that our 

14 government did not come together for us. That is why 

15 some of us are here today. These miscalculated steps 

16 have yielded severe consequences. Findings of these 

17 miscalculated steps have been exposed in many reports, 

18 including the 9/11 commission report and the EPA's 

19 inspector general's report. Mandated environmental 

20 studies were interfered with and manipulated. Accurate 

21 investigation was prevented in both timeliness and 

22 access.

23 Many of us affected by the consequences of this 

24 miscalculated steps have mistrust in the handling of the 

25 Zadroga Bill funding. Plausible deniability is a 
61

1 primary reason. Scientific research shows potential, 

2 suggestive and probable causation for health effects to 

3 all the body systems and dysfunction of all the organs 

4 of those exposed by the toxic cocktail created by the 

5 collapse of the World Trade Center buildings. Yet 

6 presented by New York City's update reports, disease7 wise only one and a half body systems have been 

8 associated with health effects caused by the World Trade 

9 Center toxic exposure. This includes the respiratory, 

10 and only a portion of the GI tract, the upper GI system.

11 Through one of the centers -- through the centers of the 

12 ex-- Centers of Excellence established by New York City 

13 and the federal government, evaluation and treatment is 

14 provided to us only for these two systems. We're 

15 referred to our health -- our own health care providers, 

16 utilizing our own insurance or out of pocket funds for 

17 other system ailments and treatments. As we all know 

18 that the City of New York is a defendant in a class 

19 action suit due to its mishandling and mismanagement of 

20 the World Trade Center 9/11 events, so is it any wonder 

21 that minimal health effects have been identified through 

22 the screening and treatment programs that were sponsored 

23 by New York City. Minimal effects -- minimal health 

24 effects means minimal liability.

25 Identification of specific ailments has less impact than 
62

1 a detected systemic disease which affects multiple 

2 organs and systems. The program screening and treatment 

3 program design is flawed and needs to be redesigned to 

4 screen, evaluate and treat all potential and probable 

5 cause health effects from the exposure, and adjustment 

6 should be made for the purpose of compensation as well. 

7 Those suffering from other than permitted ailments lose 

8 twice -- once for proper health care and once for 

9 compensation.

10 As it was already explained, we have a lot of scientific 

11 evidence that shows that the exposures that we had to 

12 the different chemicals and heavy metals can yield 

13 severe consequences with our health. All I'm doing is 

14 urging others as myself to petition for redesign of the 

15 program and refunding the removed $4 billion for the 

16 Zadroga Bill that was basically stolen from the till. 

17 Just like the health bill is being recreated, we can go 

18 back for that Zadroga bill to be recreated so we can get 

19 back that $4 billion.

20 I thank you for your time.

21 MR. ELLIOTT: Yes, thank you, William. And now we have 

22 Michael McPhillips, followed by William Gromer and 

23 Nehemiah --

24 UNIDENTIFIED: (Unintelligible)

25 MR. ELLIOTT: Okay, you did it. Very good. You got it.
63

1 Yes, sir. Thank you.

2 MR. MCPHILLIPS: Hello, my name is Michael -- Captain 

3 Michael McPhillips. I'm a disabled retired port captain 

4 who worked for New York Waterway. New York Waterway is 

5 a privately-held company that carries approximately 

6 60,000 commuters daily from all parts of New Jersey to 

7 New York City. I was the port captain in charge of the 

8 evacuation and support operation on 9/11 and the days 

9 thereafter. At 8:47 a.m. on September 11th I received a 

10 phone call from a deck hand informing me that a plane 

11 had hit the World Trade Center, and that one of the 

12 towers was on fire. After grabbing certain staff 

13 members, I immediately took a boat to the World Trade 

14 Center and upon arrival began directing the waterway 

15 evacuation. I also worked with New Jersey Transit to 

16 set up the two triage areas and the one decontamination 

17 area on the Jersey side of the river.

18 In the days that followed I was in charge of New York 

19 Water-- in charge of waterway transportation for the New 

20 York National Guard, and we also went down to the site 

21 every day with family members of the deceased. I was 

22 fortunate enough to be able to serve, you know, my 

23 country and be part of the largest water evacuation in 

24 recorded history of the world. I would not trade that 

25 honor for anything.
64

1 However, I became disabled in September 2003 and was 

2 forced to retire. It was not until 2006, after a series 

3 of tests and much research, I became aware that my 

4 illness was directly related to 9/11. I got sick, and I 

5 just thought I was sick like everybody else.

6 I've had the privilege of being able to support the 

7 FealGood Foundation in its effort to get the Zadroga 

8 Bill passed. I've traveled to Washington more than a 

9 half a dozen times over the last three years to help 

10 advocate for this bill. Now that it is passed, we have 

11 created the Zadroga Action Team to advocate for the 

12 proper implementation of that Act. We urge NIOSH to 

13 ensure that there is an agreed-upon, consistent quality 

14 of medical care and treatment provided by all 

15 participants in the world health program.

16 There needs to be consistency of treatment. 

17 Participants who are communicating identical symptoms 

18 during the monitoring process at each Center of 

19 Excellence must be treated the same in consistent 

20 manner. Disparities among treatment offered by 

21 physicians at the various Centers of Excellence must 

22 end. Disparities in the determination of program 

23 eligibility based on reported symptoms and conditions 

24 must end. Participants need to be treated holistically 

25 at one center. The practice of referring patients back 
65

1 to their own doctor for certain symptoms and ailments 

2 rather than being treated at the center must be 

3 considered.

4 There needs to be consistency in evaluation. There 

5 should be a consistent standard for evaluating symptoms 

6 and ailments needs to be established and followed by all 

7 Center of Excellences and administrative programs.

8 There should be timely reporting of test results. 

9 Centers of Excellence must inform participants of test 

10 results in a timely manner, enabling participants to 

11 access treatment without delay. Most medical 

12 practitioners provide test results within seven to ten 

13 days. Sometimes it'll take weeks and weeks to get it 

14 from the World Trade Center.

15 There must be research for first responders' children 

16 and spouses who now have illnesses resembling those of 

17 the responders. I have two kids. They both have 

18 asthma. One has sleep apnea, and they suffer from all 

19 sorts of illnesses.

20 The covered conditions -- PTSD, again, (indiscernible) 

21 standard cite, in 2006 the Surgeon General declared it 

22 as a physical illness. It must be considered like 

23 everything else.

24 Transparency, we have to have transparency in 

25 everything.
66

1 You know -- you know, we all stepped up to the plate 

2 when we were asked to on 9/11 and the days thereafter, 

3 and now we ask you to help us make sure that everyone in 

4 the 9/11 community is given the best care possible.

5 Thank you.

6 MR. ELLIOTT: Thank you, Michael. William Groner. And 

7 after William we have Nehemiah, then Susan Sidel and 

8 Reggie Hilaire. And we have no further sign-ups after -

9 - after that. So again I would encourage anyone -- you 

10 know, we could take a break, but anyone who wants to 

11 speak may want to sign up, so...

12 You may proceed, William.

13 MR. GRONER: Hi. I'll -- I'll stick around afterwards 

14 for specific questions.

15 Mr. Elliott, Dr. Howard, thank you for hosting this 

16 forum. Dr. Howard, it's very nice to see you again 

17 since we met many, many years ago. You showed an early 

18 interest and sensitivity to the plight of the 

19 rescue/recovery workers back I think in 2002 when we 

20 first met and we talked about cancer, and I'm so happy 

21 that you're part of this program.

22 My name is Bill Groner and my firm, Worby Groner 

23 Edelman, in White Plains started this litigation back in 

24 2003. We then joint-ventured with Napoli and Bern and 

25 have -- and now represent over 10,500 first responders 
67

1 and cleanup workers.

2 I have been tasked -- I took it on myself to take care 

3 and review and study and analyze the medical side of 

4 this, and I've done so for seven years. I've studied 

5 the medical periodicals, the peer-reviewed articles, Dr. 

6 Perezant's great work, as well as cataloguing the 

7 illnesses seen by our -- our cohort of over 10,000 

8 clients.

9 One of the most difficult parts about this litigation 

10 and representing these clients is the one question that 

11 I could never answer. And that was: What about the 

12 future? What about the unknown? What about the 

13 illnesses that may develop? Who's looking into that? 

14 Who's protecting us? Who's involved? Who cares? And 

15 certainly a great moment was when Zadroga was passed, 

16 just the health and monitoring side, because I felt for 

17 the first time somebody will be in charge of looking at 

18 this. Somebody will look ahead of the curve.

19 And by the way, I want to thank Congressman Maloney, 

20 Congressman Nadler, Ben Chabot, the FealGood 

21 organization, who just did fabulous work in getting this 

22 thing passed.

23 What I'd like you, Dr. Howard, to focus on -- and I've 

24 come up with about five things in my mind of issues 

25 about future illnesses that I hope that you look at. 
68

1 First of all, unfortunately the medical community needs 

2 to be -- is conservative by definition. They need to 

3 see the illnesses develop for years and years before 

4 they start discussing it, before they talk about 

5 relationships. I mean just the first study came out 

6 multiple myeloma where they only had eight in the study 

7 last year. We've known about more than that in our data 

8 pool for many years. By definition the medical 

9 community -- it takes some time. They have to get grant 

10 money. They have to do the study. I hope that you can 

11 be more aggressive than that. I hope that you have a 

12 standard about looking at illnesses that, if they're 

13 suspicious, we don't have to prove it beyond a 

14 reasonable doubt. If they're suspicious, you will look 

15 at them.

16 Five -- five groups that I want to talk about real 

17 quickly. First one is cancer. All we can talk about 

18 cancer now is epidemiologically, what's the incident 

19 rate of the cancers. Studies will come out in -- over 

20 the years. We don't have years. We need to jump on 

21 this right away. My biggest concern is that if you're 

22 only relying upon the cancer incident rate from the 

23 Centers of Excellence, that's not all the cancers. We 

24 have a number of cancer clients who are going to other 

25 institutions. Somehow that data needs to be pooled. 
69

1 You need to be aware of it. If there's greater 

2 incidence of multiple myeloma that Mount Sinai's seen 

3 from Ground Zero, you need to know that now. And I 

4 would like to continue -- or start a dialogue and 

5 continue that dialogue.

6 Second, interstitial lung disease. I have hundreds and 

7 hundreds and hundreds of clients with nodes, nodules, 

8 granulomas -- this is scar tissue of the lungs --

9 suspicious CAT scan findings. I don't think there --

10 it's being paid attention to. If it's the precursor to 

11 interstitial lung disease, it needs to be looked at. I 

12 mean a five-year Mount Sinai study showed abnormal FVC, 

13 higher than they thought, and that's precursor, 

14 potentially, possibly, to interstitial lung disease --

15 has to be looked at.

16 Third, idiopathic diseases. There are unusual diseases. 

17 People were healthy beforehand, and they're not now, and 

18 they're across the board. We have a couple of clients 

19 with IGA nephropathy, severe kidney disease, that no one 

20 is taking seriously. It's suspicious. You should look 

21 at these things. There's many idiopathic diseases --

22 thyroid diseases, cardiac issues, dermatological issues 

23 -- that people are not necessarily relating. I pray 

24 that you do that.

25 Two other quick ones -- sleep apnea, I see the studies, 
70

1 they say maybe it's not related. But you know what, I 

2 have hundreds and hundreds of clients with sleep apnea. 

3 I understand that you -- generally it's felt you have to 

4 be -- a high body mass index, you have to be overweight, 

5 maybe it's related to sinus. But we have clients that 

6 don't have chronic rhinosinusitis, they're not 

7 overweight, and they have sleep apnea, and they're on 

8 oxygen. This needs to be studied.

9 The last group is GERD. GERD is looked at as sort of a 

10 casual disease, take some Nexium, no big deal. But GERD 

11 can cause Barrett's esophagus. We have a lot of clients 

12 with Barrett's esophagus. That's a precursor to 

13 esophageal cancer.

14 What I pray that you do is you look at these diseases, 

15 you study them, and you educate all of these first 

16 responders about symptoms -- if you have them, go to the 

17 doctors; you educate the doctors -- this could be Ground 

18 Zero-related, here's what you have to do; and you work 

19 on early detection. These people need to know they can 

20 go to sleep at night knowing you're thinking about 

21 preventing future diseases.

22 Thank you.

23 MR. ELLIOTT: Thank you, William. We -- before we have 

24 Nehemiah come up we're going to take a ten-minute break 

25 -- a comfort break, if you please -- and we'll be right 
71

1 back at ten till.

2 (Recess taken from 10:44 a.m. to 10:58 a.m.)

3 MR. ELLIOTT: Thank you. Thank you for coming and 

4 commenting. Please take your seats so that we can be --

5 get started again, please.

6 (Pause)

7 All right, if we can restart here, we're going to 

8 restart with Nehemiah Bar-Yehuda.

9 MR. BAR-YEHUDA: It's -- that doesn't -- does it? Ah, 

10 okay, okay.

11 So as you know by now, my name is Nehemiah Bar-Yehuda, 

12 and as you know also, I have an Israeli accent, so if 

13 you don't understand me -- we speak fast in Israel --

14 please ask me to slow down. Okay?

15 I start with a few personal note and then I'll read from 

16 my written testimony.

17 I start with -- from -- with some personal note, and 

18 then I'll read from my written testimony.

19 Since I'm -- was in high school in kibbutz in Israel, 

20 besides teaching yoga and doing body/mind work for -- to 

21 (indiscernible) people, has been to see a social need 

22 and to respond out of the box what society doesn't do. 

23 So the first charity, after serving in Israel, in 

24 America is serving those who serve, which give holistic 

25 medicine to detoxify the body. By now the two thousand 
72

1 and six hundred of the people, many of them are sitting 

2 here, including John Feal and many of his people, 

3 including the first people who testify, Rhonda Villamia 

4 and Jennifer Spano -- they give me permission to mention 

5 their name -- the person who speak after me, and they 

6 all claim the benefit and they come to volunteer for us 

7 because we don't get the money so we need volunteers. 

8 We are self (indiscernible) as volunteer. I work -- I 

9 volunteer as a body work therapy in -- across the street 

10 from the pit and the cafeteria. Those of you who worked 

11 there remember. And then in St. Paul Church until they 

12 closed it.

13 And I straight away saw that people were coughing and 

14 the press was not reporting, except for one article by 

15 Sanchez, I think was his name, from The Daily News. So 

16 I realized here is a need. I realized that the most 

17 neglected as outcome of this tragedy is going to be the 

18 pollution, before anybody was talking about it. I've 

19 seen it in Agent Orange. I've seen it in -- commando 

20 people who were -- in Israel who were doing -- in deep 

21 water, toxic water. It takes years for society to 

22 recognize the problem. But here, unfortunately, the 

23 problem was in the lungs, so it come fast, they had to 

24 respond fast. That problem number one, I realize.

25 Problem number two I know, they are going to work on the 
73

1 symptom and if it's medicine, which is great, but they 

2 are not going to detoxify the system because it's not --

3 it's out of the box. So I look for protocol and I 

4 research with three of my friend in charity, and we 

5 found a protocol that cleanse the system -- the lungs, 

6 the body, and support the immune system. People told me 

7 -- good people, told me, nobody from the fire department 

8 are going to come to you, because of the effect. The 

9 captains are telling one another, they inviting us with 

10 -- behind the back of the fire department to the fire 

11 houses and a thousand and two hundred people, which is 

12 close to ten percent of the people who were there from 

13 the fire department, have been treated by us.

14 Now, we are not perfect of a organization, and our 

15 mission is to help people recover from both the physical 

16 illness and the psychological stress of 9/11. Our main 

17 program are Ayurvedic herbal formulas which were 

18 developed by world-renowned Ayurvedic doctor, Pankaj 

19 Naram, who has worked with Mother Theresa and the Dalai 

20 Lama. Ayurveda, for those of you who don't know, is the 

21 ancient medical art and science of India over 5,000 

22 years.

23 Our programs are supervised by Western MDs, led by our 

24 chairman of the board, distinguished integrative 

25 psychiatrist Dr. Richard Brown of Columbia College of 
74

1 Physician and Surgeon, and gives over -- who -- who is 

2 teaching Columbia College and give over 200 medical 

3 conference talks a year all over the world.

4 Our Ayurvedic -- our Ayurvedic herbal formula are meant 

5 to be integrated with whatever medical 

6 protocol/pharmaceutical one is doing. Which mean we are 

7 not alternative. We are not fighting with medical 

8 profession. We want to work together. Okay?

9 A study was done of our herbal program by Dr. Kathy 

10 Falks of Mount Sinai College of Medicine and Dr. Jim 

11 Dahl, then senior researcher at Phoenix House, one of 

12 the top drug treatment program in the U.S. This study 

13 was published in the peer-reviewed journal, Alternative 

14 Therapies in Health and Medicine. You can see it on the 

15 front page of our -- you can -- link on our web site.

16 In this study our program participant reported that Dr. 

17 Naram's herbal formula that we distribute for 9/11 

18 toxicity were 32 percent more effective for them than 

19 any other treatment they tried. There's a statistic way 

20 of questioning and writing it by scientific, and it was 

21 done this way -- this way, and it's a huge statistical 

22 difference, 32 percent, including emotional challenges.

23 Why it works? Because our approach was -- you have to 

24 deal with the root cause. You have to cleanse the body 

25 of toxin. It's not enough to treat the symptoms. You 
75

1 better do it be-- many people came before they had 

2 cancer and maybe they don't have cancer because of it. 

3 If they have cancer, they still -- we still can help 

4 them and so in all these conditions.

5 We have a -- the first person who came to us, when he 

6 came to us he was the first fireman. He was our guinea 

7 pig when we start -- start -- tried. We had -- he had 

8 30 percent lung capacity, but now he has more than 70 

9 percent. Some firemen came back to force. They were 

10 retired and they came back. Now one of them is now 

11 captain -- became captain.

12 Our other main programs are Breathwork and Meditation 

13 workshops -- one of them is going to be given this 

14 weekend and next weekend in Staten Island -- taught by 

15 Dr. Brown. Dr. Brown has taught these workshop all over 

16 the world, to health professional as well as people 

17 affected by trauma, as natural disaster, Viet Nam war, 

18 Afghanistan and so and so. In emotional trauma it did -

19 - he helped them with their physical and emotional, in 

20 addition to those who serve the 9/11 community.

21 Dr. Brown and his wife work together integrative --

22 she's integrative psychiatrist also, Dr. Patricia 

23 Gerbarg. They have gathered research done in peer24 reviewed journals and are conducting research that 

25 demonstrate that the techniques that they teach in this 
76

1 course have dramatic effect in both reducing the symptom 

2 for the worst kind of trauma, raising lung capacity, and 

3 helping the enormosity (sic) of the psychological 

4 process such as -- and psychological post-traumatic 

5 stress.

6 The experience of the 9/11 community that trust us and 

7 come to us without any advertisement, without -- we have 

8 research, but we still don't have the money for blind 

9 test research -- shows that our work should be 

10 researched and financially supported by the Zadroga Bill 

11 as an important contribution to helping the 9/11 

12 community heal from both the physical illness and the 

13 psychological trauma associated with 9/11 illness.

14 To close, people from 9/11 who were volunteering get our 

15 herbs for free with the amount of funds that's been 

16 given. Our cost by (unintelligible) give it for the 

17 resident is $30 a month, one dollar a day.

18 With a fraction of the $4 billion, small fraction, for 

19 research to prove the efficiency of program like us and 

20 other program -- I don't want to claim exclusivity -- in 

21 addressing the root cause, thinking out of the box, 

22 y'all commission and all other organizations involved 

23 can save so many life that it's worthwhile testing and 

24 funding.

25 Thank you. I appreciate it. And the person who talk 
77

1 after me is also one of our recipient, please.

2 MR. ELLIOTT: Thank you, Nehemiah. Susan Sidel, and 

3 then we'll have Reggie Hilaire.

4 MS. SIDEL: Hi, I'm Susan Sidel. How are you? Okay, 

5 can you hear me? No, I don't want to hold it.

6 My name is Susan Sidel, and -- you can't hear me. 

7 Closer to my mouth? Is that better? Okay. All right. 

8 Thank you.

9 My name is Susan Sidel, and before 9/11 I was an 

10 attorney -- an entertainment attorney. Now I'm 

11 disabled, totally and permanently. I have brain damage. 

12 I have a connective tissue disease. My back is falling 

13 apart. My lungs are -- actually have improved because I 

14 -- I was in -- I did take the herbs that Nehemiah is 

15 talking about. I started them in 2009, and also I did 

16 the Breathwork, and you can ask Dr. Crane*, because he's 

17 my doctor and he has all the -- all the data.

18 I have two things that I wanted to talk about. One is 

19 all this talk about medical research linking toxins to 

20 the World Trade Center. And the second thing I want to 

21 talk about is the New York State Worker's Compensation 

22 volunteer program.

23 The first thing I want to talk about is -- let's talk 

24 about the -- the studies that are out there. And you 

25 know, my father is a -- well, he's retired now, he's 88, 
78

1 but -- but he was one of the very first OSHA engineers. 

2 He had to be certified when OSHA came into being. He 

3 went to MIT -- had to go back to school and, you know, 

4 learn all about OSHA. And in his study I found this 

5 little book called The Rapid Guide to Hazardous 

6 Chemicals in the Workplace, and it's a really easy 

7 booklet. You look up the chemical and it says, you 

8 know, what happens when you're exposed to it. And it 

9 talks about different kinds of exposure, you're exposed 

10 through the skin, you're exposed through the nose, you 

11 know, did you drink it. So for example, mercury. There 

12 was a gentleman that was talking about the light 

13 fixtures in the twin towers, so in this book, Fallout by 

14 Juan Gonzalez, he won a Pulitzer for the research that 

15 was in The Daily News, I think there's some -- I think 

16 he says that there's -- there were 500,000 fluorescent 

17 lights just in the twin tower buildings alone, so that's 

18 a lot of mercury.

19 So this book -- this is from 1984 -- it talks about how 

20 mercury causes brain damage. And in this book, which is 

21 like a new book that NIOSH puts out, along with the CDC, 

22 it says the same thing. So I don't understand the 

23 disconnect between the way the whole program is run and 

24 what you're calling research. Because this is your --

25 not -- I'm not -- I don't mean you, I mean the 
79

1 government, so it's not you personally, please. I mean 

2 I don't understand the disconnect because it's well 

3 established what toxins -- certain toxins can do to 

4 people physically. And if I were running the program 

5 from the very beginning, from day one -- and I realize 

6 that you were hindered by the Bush administration --

7 what I would have done is I would have made a list of 

8 all the chemicals that were down there and all the 

9 potential health hazards that could come as a result.

10 So for example, the three cognitive tests that I've had 

11 that show that I could never have gone to law school 

12 with the brain that I have now, I could never have 

13 passed the New York Bar with the brain that I have now 

14 because I have so much brain damage, you know, from 

15 exposure probably to mercury and lead -- that would have 

16 been figured out at the very beginning, and maybe that 

17 would have been something that could have been treated.

18 I have a connective tissue disease that took two years 

19 in Worker's Comp court to prove. And the way that that 

20 got diagnosed was not through Mount Sinai; it was 

21 through -- I had to go to a private doctor because it 

22 wasn't on the -- back in those days it wasn't on the 

23 list of conditions that were -- I don't think 

24 musculoskeletal issues were even on the list generally. 

25 I think that was added later because I remember talking 
80

1 to Dr. Herbert about it and, you know, connective tissue 

2 disease falls under that. So I have like a positive 

3 ANA, and sometimes I have a positive anti-DNA. It's 

4 like well-established that, you know, you can have a 

5 connective tissue disease -- sometimes it happens from -

6 - hereditarily, but usually with women it would affect 

7 you -- you'd find out in your early twenties. For me, 

8 it happened to me in my mid-forties. So the other way 

9 that you can get a connective tissue disease is from 

10 exposure to toxins. I mean that's not -- that's not new 

11 information.

12 That's like very well-established that -- so when I was 

13 listening to this gentleman here, he sounds like his 

14 symptoms are very similar to mine. But because he 

15 didn't go to a rheumatologist and have that panel of 

16 labs done where they test -- you know, they don't just 

17 do a complete blood count. They do -- they -- they do a 

18 rheumatological panel and they're testing for like your 

19 -- you know, your anti-ANA and your anti-Ro and your 

20 anti-DNA, and they're testing like your IGG and your IGA 

21 and all those other immunogammaglobulins -- I'm so not a 

22 doctor and I did bad in science. But you know, there 

23 are tests that could be done. And you know, the doctors 

24 at Mount Sinai are -- are not expert rheumatologists, 

25 nor should they be.
81

1 And what I don't understand is, this is America, and you 

2 know, we have so many brains here, and especially in New 

3 York, why aren't you -- why aren't you engaging Sloan4 Kettering to help with cancers? Why aren't you engaging 

5 Hospital for Special Surgery to look into 

6 musculoskeletal issues and -- and autoimmune diseases? 

7 You know, why aren't you getting the biggest brains in 

8 the country involved in this?

9 I'm from Boston originally and I have a friend that was 

10 also a volunteer. She drove down from New Hampshire, 

11 and she has to drive to Worcester, Massachusetts --

12 which is not a nice place -- to go to a hospital, one of 

13 the Centers of Excellence, that, you know, is -- I think 

14 it's affiliated with U. Mass., which is -- has a really 

15 good public health program. But you know, my question 

16 is why don't you have Harvard's public health program 

17 involved? I mean they're like the number -- you know, 

18 they're like tops. I don't understand why we're not 

19 getting the best and the brightest involved.

20 And the other thing that I wanted to talk about just 

21 really quickly is with the Worker's Compensation program 

22 because with my treatment there's been such a delay 

23 fighting my doctors, fighting Dr. Crane, you know, 

24 fighting my doctors at Hospital for Special Surgery, 

25 that it has hindered my health. And I know that they 
82

1 got $15 million from the federal government and there's 

2 about 1400 and -- I think 1400 or so volunteers --

3 unpaid volunteers, sorry, that are in that program. Why 

4 are they fighting these claims? That -- that bill that 

5 created that fund, we're supposed to be treated 

6 expeditiously and compassionately. That has not been 

7 the case. I mean sometimes they're -- they're good at 

8 things, but for the most part it's not the case. And 

9 why hasn't there been an accounting to see how much 

10 money is spent fighting claims versus -- versus just 

11 treating them? Because if I'm winning all those cases, 

12 then what's the point of -- of taking me to court, you 

13 know, three times and doing a bunch of IMEs? It's a 

14 waste of money.

15 Thank you.

16 MR. ELLIOTT: Thank you for those comments, Susan. Now 

17 we'll hear from Reggie Hilaire, followed by Barbara 

18 Horn, then Darcia Hemphill. Reggie?

19 MR. HILAIRE: Hi, good morning. Can anybody --

20 everybody hear me?

21 All right. Thank you, Dr. (sic) Elliott, Dr. Howard, 

22 for this forum. I'm a New York City police officer. I 

23 was appointed -- I was hired in September 2000, 

24 graduated from the Academy May 2001. I spent over 850 

25 hours at Ground Zero on Staten Island. In 2005, at the 
83

1 age of 34, I was diagnosed with thyroid cancer in June 

2 of 2005, and then multiple myeloma, a blood cancer, in 

3 December 2005.

4 At the time, I didn't know anybody that worked down 

5 there that had cancer. 2011 I know of 13 MOS -- that 

6 means members of service -- of the New York City police 

7 department with cancer, and two unfortunately passed 

8 away.

9 When you're dealing with cancer you're not dealing with 

10 -- you're -- you're being thrown at everything, and the 

11 least on your mind is "Oh, I have to notify the City, I 

12 have to notify Mount Sinai." But because I had so much 

13 time on my hands because I was out sick, I went on the 

14 computer and I was like okay, let me notify Mount Sinai 

15 and let me notify the New York City's World Trade Center 

16 health registry. I told them that I have cancer. I 

17 have thyroid. I have multiple myeloma -- just to cover 

18 -- just to let them know, to let everybody know.

19 I'm being treated for both cancers at Sloan-Kettering, 

20 which if you know in New York City, that's the best 

21 place in the world to go. I told my hematologist about 

22 my work down there, and months later -- I have to go 

23 every couple of visits, every couple of months -- he 

24 comes to me and like "You're a cop?" I said yeah. "You 

25 worked at Ground Zero?" I was like "Yeah, I did; why do 
84

1 you ask?" "Well, I'm seeing other patients with blood 

2 cancers." So I asked him "Do you think there's a link?" 

3 Like "I don't know, it's too early to tell."

4 I support everybody's help with the Zadroga Bill as 

5 great, but when I downloaded the law and I read it, I 

6 was kind of shocked because in order for a cancer to be 

7 added, we need published evidence. However, I hope I'm 

8 not reading it wrong, other conditions and interested 

9 parties can petition the administrator to add this -- a 

10 condition to the list. I have a problem with that 

11 because it's -- it seems we're separate and unequal. 

12 People with cancer -- the guys I know have cancer, the 

13 last thing on our minds was to -- to notify everybody. 

14 However, I'm very concerned about people down the line -

15 - other cops, other firemen, other first responders 

16 regardless of what they -- how much they did or what was 

17 their affiliation, would they be afforded the same 

18 rights? However, I'm not trying to say we're different 

19 or special than anybody else. We all worked down there. 

20 We're all brothers, sisters together. However, cancer -

21 - we're -- we feel like that we're the stepchild. We 

22 know, we're hearing people with cancer. However, our 

23 burden of proof is different.

24 I propose that it shouldn't be separate and unequal. We 

25 should have the rights -- the rights. My union knows I 
85

1 have cancer. My union introduced me to other people 

2 that have cancer. Why can't -- and the police 

3 department, the medical division, knows of myself and 

4 others. I believe, like other speaker have said, we --

5 we have a small window of opportunity, about five years, 

6 before Zadroga has to be re-funded. Being a New Yorker, 

7 being a cop, I'm being very cynical. I don't know we're 

8 going to get re-funded at this point. I feel everybody 

9 should be proactive. The unions should tell the 

10 administrator, this is -- our members have this. The 

11 administrator should go to the -- to the departments, 

12 the fire department, the NYPD, to ask you guys, ask the 

13 agencies "Hey, you guys are seeing anything? Are your 

14 members sick?" I just feel it's very slow. We need --

15 as a cancer survivor, I feel like I'm proactive. This 

16 caused me to be proactive. We have a small window of 

17 opportunity to do this before members die and other 

18 people have cancer. We're not even thinking about it. 

19 The doctor -- the medical community is not even thinking 

20 about cancer. When I tell them about this, everybody, 

21 they're like "Well, we're not sure." The red light 

22 should go on. We should think outside the box because 

23 this is unprecedented. There's no medical evidence --

24 just, again, be proactive. We should be afforded the 

25 same opportunities to petition the administrator, either 
86

1 us as victims, as first responders, or our unions or our 

2 agencies or anybody, because right now I just feel the 

3 letter of the law is -- the administrator goes by the 

4 letter of the law. It's not fair.

5 And thank you very much.

6 MR. ELLIOTT: Thank you, Reggie. And now we'll hear 

7 from Barbara Horn, followed by Darcia Hemphill, and then 

8 Dr. Margaret Dessau.

9 MS. HORN: Good morning. Can I be heard? Closer? Just 

10 right? Okay. Do this (indicating) in the back if my 

11 voice goes down.

12 I'm going to go off-script just for a moment because 

13 this is a poem that I have heard read, and read 

14 sometimes when we remember September 11th. It's by Jane 

15 Stanton Hitchcock. It's a quote, really.

16 (Reading) A violent act pierces the atmosphere, leaving 

17 a hole through which the cold, damp draft of its memory 

18 blows forever.

19 So I think we're feeling that draft. My name is Barbara 

20 Horn. During the 9/11 recovery I served my country as a 

21 volunteer at St. Paul's Chapel. St. Paul's Chapel is 

22 where George Washington and members of Congress walked 

23 to immediately following the swearing-in of our first 

24 president. This is the house of worship where they came 

25 to pray for the strength and courage they needed to 
87

1 govern our brand new nation.

2 St. Paul's Chapel is also the place where thousands of 

3 recovery workers walked to day after day, night after 

4 night, as they cleared the wreckage and recovered the 

5 remains of those who perished at the World Trade Center. 

6 This is the house of worship where they came to pray for 

7 the strength and courage they needed to continue their 

8 labor of love at the site of the first attack on our 

9 nation's shore.

10 I am part of the Zadroga Action Team. I'm also a 

11 veteran of the lengthy and ultimately successful 

12 lobbying efforts for the 9/11 James Zadroga Health and 

13 Compensation Act. It is due to the efforts of the 

14 veterans of 9/11, some who are here today, some who are 

15 too sick to attend, and some who have suffered and died 

16 because of their 9/11 service, because of them and the 

17 Congressional delegates who heeded their cries -- that's 

18 what brings us all here today.

19 It is my fervent desire to see that there's no more loss 

20 because of the 9/11 attacks. I do not want one more 

21 survivor or one more responder to die because of what 

22 the terrorists did here.

23 Therefore I urge you, NIOSH, who have been given the 

24 sovereign duty to implement this law, to consider the 

25 following:
88

1 First and foremost, help the children. We must do our 

2 utmost to bring to bear every resource and remedy to 

3 alleviate the suffering of the children because of their 

4 exposure, or their parents' exposure, to the toxins that 

5 filled the streets and air of our great city and the 

6 surrounding areas. We must do everything possible to 

7 care for them. If we don't help our children, what good 

8 are we?

9 Next, I applaud -- I applaud the fact that the Zadroga 

10 Act emphasizes the importance of having established, 

11 ongoing avenues of communication with all those being 

12 monitored and treated at the World Trade Center 

13 treatment and monitoring programs. I would like to 

14 propose the following model to be used as the primary 

15 avenue of communication that will put teeth into this 

16 part of the Act. The models are above and beyond --

17 these models are above and beyond the steering 

18 committee. The steering committees do good work, but 

19 their work is primarily administrative in nature. I 

20 believe a direct line of communication to the 

21 participants is what truly will bring about a patient22 centered health care model.

23 I recommend the adoption of a community advisory council 

24 for each Center of Excellence. This council would 

25 consist primarily of participants at the respective 
89

1 center. Some of the benefits for the participants would 

2 include appreciating being part of the program, listen 

3 to and having your opinions valued, understanding how to 

4 be an active participant in their own health care, and 

5 recognizing that collaboration with their, our, 

6 providers through patient center care leads to better 

7 self-management of chronic conditions -- uh-oh, yellow.

8 Okay, the benefits for the health care organization 

9 include learning what the priority concerns are for the 

10 patients, which may not be what the health organization 

11 selects; hearing directly from the consumers, the 

12 patients; transforming the culture toward patient13 centered care -- it's top-heavy right now; developing 

14 programs and policies that are relevant to the patients' 

15 needs. This all will improve customer satisfaction, 

16 which leads to stronger patient loyalty and strengthens 

17 community relations.

18 The very last thing, for the resear-- further, I would 

19 also suggest there be a coalition of these councils and 

20 these individual councils would send members to the 

21 coalition, and the coalition would have -- would have an 

22 overview of what's happening at all the centers, would 

23 strengthen and passionately promote the things that are 

24 working and would swiftly yet thoughtfully address the 

25 problems that could come up. We could see them, we can 
90

1 track them.

2 Lastly, please, for the research component of the 

3 program, I urge you to adopt something called the 

4 community-based participatory research. It's called 

5 CBPR. It's the new thing, the cutting edge in the 

6 health care world, and see -- I -- two sentences, if I 

7 may. May I? Thank you.

8 CBPR is research conducted as an equal partnership 

9 between traditionally-trained experts and members of the 

10 community. The community participates fully -- fully, 

11 fully, fully -- in all aspects of the research process, 

12 including the conception, the design, the analysis and 

13 dissemination of the research. This research will 

14 engage the community as a partner in collaboration with 

15 the scientists. And mounting research shows that when 

16 this happens, guess what? The research actually 

17 produces better results that are more fully embraced by 

18 the community. It is a truly win/win approach.

19 I thank you very much.

20 MR. ELLIOTT: Thank you, Barbara, for those comments. 

21 Darcia Hemphill?

22 MS. HEMPHILL: Hi. Good morning, everyone. Can you 

23 hear me?

24 Okay. Good morning. Can you hear me now? Hi, my name 

25 is Darcia -- oh, hold it.
91

1 My name is Darcia Hemphill -- oh, yeah, 'cause I'm too 

2 tall. Thanks, better.

3 My name is Darcia Hemphill. I'm here today in behalf of 

4 my husband, Milton Hemphill, who was a victim of 9/11 

5 and he wasn't a police -- wasn't from the police 

6 department nor from the fire department nor a first 

7 responder. He was a worker around the area and also a 

8 hero, 'cause he saved a lot of life that day, too. And 

9 -- I mean you're talking about someone that was very 

10 healthy -- healthy, physically fit and he's 

11 (unintelligible), doing all kind of things -- running 

12 New York City marathons -- and was diagnosed like in 

13 2005 with sarcoid disease. Having problems now. He was 

14 in the ICU three weeks ago for two weeks, and he's --

15 his condition is deteriorating and we never asked for

16 help. We didn't know how nor where to go and -- I mean 

17 I'm glad for one person that really, really make me come 

18 to this meeting today so I could really approach you to 

19 know why is not -- why this information is not out 

20 there? Why is a lot of people not knowing where to go, 

21 what to do? And wha-- he'd been registered with the 

22 9/11 registry in 2005 since we start -- he started 

23 symptoms earlier, but we didn't know -- they couldn't 

24 find what was wrong with him, and he was diagnosed after 

25 surgery with the disease. Right? And why is not people 
92

1 knowing where to go, what to do, or why is not a lot of 

2 information out there for us to know what to do?

3 I called Bellevue Hospital because -- I mean I'm close 

4 to Mount Sinai but I'm not allowed to be there. I don't 

5 know why is only for certain people to only go there or 

6 why is only certain group can go there, and why we have 

7 to go all the way to Bellevue Hospital just to get check 

8 and wait so many -- I have to wait till May for him to 

9 be seen and he's not good right now, you understand what 

10 I'm saying? He have an appointment until May. I mean 

11 he's deter-- his condition is very deteriorated right 

12 now.

13 He -- he had acute kidney failure recently, and have 

14 other illnesses. So I'm trying to find out what is it, 

15 Dr. John, that we could do, where could we go, how could 

16 we be part of this because we weren't -- we didn't 

17 approach anyone and we really need the help. And I know 

18 a lot of people's out there right now that's got sick --

19 got -- got sick after that, and they probably don't even 

20 know what to do, like myself, right now. And I got a 

21 family, like childrens (sic), and I mean we don't know 

22 what to do.

23 Thank you very much.

24 MR. ELLIOTT: Thank you, Darcia. You may want to speak 

25 with -- there's some of the NIOSH representatives here 
93

1 that you might want to speak to -- and the program 

2 folks. You may want to speak with the program folks to 

3 find out how to get enrolled.

4 Dr. Margaret Dessau, and then we'll have Bruce Edwards 

5 and Mary Fetchet.

6 DR. DESSAU: Good morning, Mr. Elliott, Dr. Howard. My 

7 name is Dr. Margaret Dessau. I'm a retired 

8 pulmonologist --

9 UNIDENTIFIED: (Unintelligible)

10 DR. DESSAU: My name is Dr. Margaret Dessau. I'm a 

11 retired pulmonologist affiliated with Columbia 

12 University, a native New Yorker. I lived in Tribeca for 

13 34 years. I was here on 9/11, facing it, seeing the 

14 horrific thing, and then I was right opposite the barge, 

15 so I was exposed and the whole neighborhood was exposed 

16 for a lot longer than often many of the first 

17 responders. Yet there was no outreach, really, at all 

18 to the residents, no epidemiological investigation. I 

19 only found out about the possibilities through the 

20 downtown express, found out about CB-1, Catherine 

21 Hughes, who got me involved. I volunteered, because of 

22 my specialty, with the World Trade Center registry with 

23 Dr. Jim Cohen to see if I could help, and discovered 

24 through that about the sarcoid connection. 

25 Epidemiologic data, which is statistics -- I'm a 
94

1 scientist; I'm also a humanist -- it takes years. There 

2 are multi-factorial agents, there are pre-existing 

3 conditions. I worked in compensation for reviews, so 

4 I'm familiar with the system. I was in this building 30 

5 years ago doing comp reviews, you know, so I understand 

6 the difficulty.

7 But I think, just listening to Ms. Hemphill, it -- it's 

8 heart-wrenching. And when I was in the committee --

9 first of all, only 20 percent of those who registered --

10 there was never an outreach to the community. Many 

11 people didn't know about it, like myself; questionnaires 

12 to get a baseline. When I asked Dr. Cohen why is there 

13 no study going on for studying carcinomas of all kinds, 

14 particularly respiratory, lung carcinoma, he said well, 

15 there was no funding for it. I said don't you thi-- and 

16 also there was no database starting at the time zero. I 

17 said "Well, it's not too late." But you know, we just 

18 could do what we can do.

19 On a personal note, my husband and I are athletes, very 

20 active, marathoners, skiers, everything, and perfectly 

21 healthy until -- my husband was a non-smoker, and then 

22 in January '09 he was diagnosed with stage 4 lung cancer 

23 and he died four months later. And I just can't help 

24 believe there's a connection.

25 And we learned after World War I about mustard gas, and 
95

1 from World War II after the Nagasaki and Hiroshima 

2 explosions about all these toxic exposures. We should 

3 at least learn from a terrible experience, with our new 

4 scientific, technological data handling, we should be 

5 able to get some scientific data out of this. I'm 

6 sorry...

7 MR. ELLIOTT: Thank you, Dr. Dessau. Bruce Edwards?

8 MR. EDWARDS: I'd like to thank Dr. Howard and Mr. 

9 Elliott for holding this meeting for us. It's very 

10 important.

11 My name is Bruce Edwards, and I was a 9/11 responder. I 

12 worked as an electrician at the Verizon building at 140 

13 West Street. I spent the better part of 18 months at 

14 Ground Zero, and in 2007 -- late 2007 -- I was diagnosed 

15 with stage 4 non-Hodgkin's lymphoma. I spent the better 

16 part of two years battling the disease, and I just feel 

17 victimized twice. The first time by the disease itself, 

18 and the second time by lack of treatment I was afforded 

19 at the medical monitoring systems.

20 They were willing to treat my sinus conditions and the 

21 depression and all the other things that were brought on 

22 by the disease, but nothing for that particular disease. 

23 And Jim Ryder mentioned that -- previously that they 

24 just show you the door if you have cancer, and I feel 

25 very -- I don't agree with that.
96

1 All my doctors agree that my -- my cancer was 9/11-

2 related, and I would -- I would hope that NIOSH would 

3 follow that -- that thinking.

4 On another item, I know it's a very small model, but I -

5 - I arrived at Ground Zero on September 14th. I was one 

6 of eight men in my crew. And Bob Ciano, one of my men, 

7 he's passed on from cancer and I'm currently in 

8 remission. So I know it's small, but that's 20 percent 

9 of my crew that has been seriously affected by this.

10 And as Mr. Gronan (sic) noted that we're not included in 

11 these studies. The cancer just gets pushed aside, and 

12 it's really, really affecting our lives.

13 I appreciate NIOSH's current efforts, but I hope that 

14 they will be expanded for responders like myself and 

15 others, and they will include this current criteria.

16 Thank you.

17 MR. ELLIOTT: Thank you, Bruce, for those comments. 

18 Mary Fetchet, and then Wanda Ortiz, and Diane Stein 

19 after that.

20 MS. FETCHET: It's nice to see familiar faces out there 

21 in the audience. I wanted to begin by thanking Dr. 

22 Howard and Mr. Elliott for the time to speak today, and 

23 to be able to pull together this community and listen to 

24 their concerns. I think that's just critical.

25 My name's Mary Fetchet and my husband Frank is here with 
97

1 me today. We lost our 24-year-old son, Brad, on 9/11 

2 and -- he was on the 89th floor of Tower Two, worked for 

3 (indiscernible) and Woods and was 24 years old at the 

4 time.

5 Just to give you a little background information, Brad -

6 - Brad had just graduated from college and hadn't --

7 hadn't been in -- in the job that long, but I was at the 

8 time working as a clinical social worker in an out9 patient mental health clinic about a half-hour north of 

10 our home in New Canaan, Connecticut. And I used to 

11 attend a conference with -- about victims of crime, and 

12 they had high profile cases -- like the Unabomber's 

13 brother was there and some -- some of the victims.

14 But they had this woman that lost her daughter in 

15 Oklahoma City speak, and on a large-screen TV they 

16 showed the events of that day unfold, and the video 

17 actually ended with her walking through the memorial and 

18 talking about that her friend Susan sat here, or her 

19 friend Tom sat there, and that they had -- the nursery 

20 was here. And so I was so compelled, not just by the 

21 images and the video that day, but by her message that 

22 the attacks in Oklahoma City expanded well beyond the 

23 families that were directly affected. They had a higher 

24 incidence of depression, anxiety, suicide, spousal 

25 abuse, job loss, and many other disorders, and it 
98

1 rippled through the broader community.

2 And so of course this was before Google, but I did a lot 

3 of research then. You know, I don't know that I thought 

4 about it as a terrorist event, but I did think about it 

5 -- that this was a community that was impacted by a 

6 horrific event and that there were people that had to 

7 respond, not just to the loss that was suffered that 

8 day, but to the devastation within their community.

9 And so the Friday before 9/11 I thought as much as I'd 

10 like to work with victims of trauma, it's not going to 

11 happen here in Connecticut and I threw the materials 

12 out, and then 9/11 happened. So I'm seeing Barbara sort 

13 of nod. You know, many people don't even know that 

14 background.

15 But when I started going to the family assistance center 

16 I was looking through those lenses and I saw people 

17 coming in from around the country and around the world. 

18 They were shouting out the need for interpreters, you 

19 know, of languages I had never heard of. Of course you 

20 saw the volunteers and the rescue workers that came to 

21 help our families, and I'm learning over the years that 

22 many of the people that survived actually responded in 

23 setting up and helping with families that were coming in 

24 from around the country and around the world.

25 So my journey began there. I started having weekly 
99

1 support groups in my home, you know, and then I opened 

2 an office later. The first people that I hired were 

3 social workers because I knew that if -- I could either 

4 choose to run the organization or to listen to the 

5 stories and help the people that had survived. And it's 

6 funny, we're actually going through the process of 

7 forming our business plan with this busy year ahead with 

8 the tenth anniversary, and I pulled out our first 

9 brochure, which was an advocacy group providing 

10 resources and support to the victims, families, 

11 survivors and all those impacted by the terrorist 

12 attacks on September 11th.

13 And so what I've seen over the years is this -- it 

14 wasn't just our family. The woman from Oklahoma was 

15 exactly right. The people that responded that I met 

16 early on at the Taj Mahal -- you know, I recognized at 

17 that point that they probably at some point would need 

18 psychological help, but I never dreamed that there would 

19 be this long list of medical problems that so many 

20 people here today that are representing the people that 

21 can't be here today are -- are trying to convey to you 

22 the real needs that they have.

23 As an organization we have now three offices in New 

24 Jersey, Connecticut and Washington, DC, and we're 

25 working with the Pentagon families and survivors. But 
100

1 what I'm seeing first-hand is people coming forward as 

2 the woman spoke today. People -- women now that are 

3 single parents, they've lost their loved one due to the 

4 cancer that their spouse had.

5 We're also seeing women that are living with, and 

6 families that are living with, people that have chronic 

7 illness. They're having respiratory problems, constant 

8 calls to the hospital, constant doctor visits, problems 

9 related to their PTSD, the nightmares that they're 

10 having. These families are really ill-equipped to deal 

11 with what they're seeing.

12 We're having survivors, many of them who are not 

13 registered, that either lived or worked in the area. 

14 And for many of them, their coping skill is to move 

15 away. You know, I think if they're -- they're not faced 

16 with being reminded of the event up in Maine. But the 

17 problems that we're seeing as they're dealing with both 

18 psychologists and medical doctors that have no clue 

19 about the impact of 9/11.

20 So I do think that there's going to be, you know, 

21 intergenerational issues. There is going to be this 

22 rippling effect, not just today but in the many years 

23 and the generations to come. I think there's going to 

24 be the need for people to have treatment that -- that 

25 we're thinking -- listening to what their needs are and 
101

1 integrating that into our programs.

2 We have to give them information. We have to give them 

3 support, and we have to give them services in our own 

4 communities. I think that's really a unique way that 

5 we've dealt with our families. You can't expect 

6 somebody living in Maine to have to come to the New York 

7 area for treatment. We have to educate service 

8 providers outside the area.

9 And I think we have to look at -- I think my fear with 

10 the tenth anniversary, the attention of the tenth 

11 anniversary, we're going to see and have to deal with 

12 many more people that are coming forward for the first 

13 time. And so I think it's unpredictable the number of 

14 people that unfortunately this event has impacted.

15 And so I think that you've seen today, not just hearing 

16 the stories, you know who the organizations are that are 

17 providing support, and I would just ask you, rather than

18 reinventing the wheel, support our organizations, many 

19 of them who are in the room today, that understand this 

20 population. Trust is so huge, so I think that you have 

21 to really try to help support the existing organizations 

22 that have worked with these populations from the very 

23 beginning. And we have to, as organizations, then be 

24 able to inform the Centers of Excellence that are 

25 providing the concrete support.
102

1 I can say on behalf of all the families, we've been 

2 notified five times of our son's remains and -- I'm 

3 sorry -- but I remember when we were notified for the 

4 first time in November of 2001. And I remember going to 

5 St. Paul's and bringing a card and my roses, 'cause it 

6 was the only gesture that I could make to thank the 

7 people that came -- that left their own families, you 

8 know, at a time that we were trying to bring our 

9 families together, and the bravery and heartwarming 

10 response that these rescue workers and the people that 

11 survived -- you know, I can never thank them enough. 

12 And I just pray that you will help them through this 

13 difficult time, and that you will listen to what they 

14 say. And you know, I think it's very short-sighted if 

15 we can't help the people that were so brave, that not 

16 just helped our families but helped our country.

17 So thank you.

18 MR. ELLIOTT: Thank you, Mary. Wanda Ortiz? Then we'll 

19 hear from Diane Stein.

20 MS. ORTIZ: Hello, good morning. My name's Wanda Ortiz. 

21 I do not speak English very good, but I try. Everybody 

22 here, I have the same thing problem. Everybody is sick 

23 because I working in the Ground Zero. I am -- I working 

24 in the area Ground Zero, I working cleaning office in 

25 the building, the company Tanco*. Now I'm very sick. I 
103

1 have the 75 percent of my body not working good. I have 

2 the asthma, fibromyalgia, GERDs, and the presumed 

3 neurological problems. Every day I need nine different 

4 medicines. When they -- I eat, I need the medicine for 

5 my stomach. My life is no good in this moment. I have 

6 two small kid. Sometime never I go again can I go to 

7 the tree because I have the lot of problem in my body, 

8 in my leg. That's why the doctor say this is fibro--

9 now I have -- I have (unintelligible) -- my asthma. 

10 Never get out -- out of my house on the medicine. 

11 Everybody come back when they forgot the cellular. Me 

12 come back when I forgot the medicines. Now is very hard 

13 because '97 -- 1997 I had two different job. Now in 

14 2001 October and December, never -- is very different 

15 because in 2002 (unintelligible) working is very 

16 (unintelligible). I go to the emergency room. My 

17 asthma don't allow long-distant working because that's -

18 - now -- it's different, everything.

19 Okay, thank you.

20 MR. ELLIOTT: Thank you, Wanda, for those comments. 

21 Diane Stein, and then we'll hear from William Gleason, 

22 followed by Troy Rosasco.

23 MS. STEIN: Hi, can -- can anybody hear -- can everybody 

24 hear me?

25 Okay. My name is Diane Stein, and I'm a resident. I 
104

1 live in Independence Plaza, which is a large apartment 

2 complex, about 3,000 or so tenants, and it's located 

3 around six blocks from Ground Zero. And it was also --

4 we were right next to where they were bringing the 

5 debris removal barges after -- you know, remov-- after 

6 9/11, for months and months afterward.

7 And this past Saturday I attended two funerals for 

8 people in the community who both -- each died of cancer. 

9 One lived in Independence Plaza. She was only 62, which 

10 is not all that old. And the other gentleman lived 

11 right across on 125 Cedar Street, which is right next to 

12 -- their building was like blown away from -- you know, 

13 from all the debris and he had -- he was diagnosed -- he 

14 had pancreatic cancer, which originally started with I 

15 think feelings of GERD and wasn't diagnosed as quickly 

16 as it might have -- might have been.

17 And we'll never know if these were -- if these incidents 

18 were 9/11 related, and that's one of the problems is, 

19 you know, hearing a lot of anecdotal reports from 

20 neighbors, but there's not a lot of -- there's no real -

21 - I don't think there's a really great mechanism in 

22 place right now for connecting the dots -- excuse me.

23 A number of my neighbors are not in -- on any of the 

24 databases. Many people in the area have not registered, 

25 are not included in the World Trade Center health 
105

1 registry. And also a number of people -- people who 

2 have been reporting sick, they're not going -- they 

3 haven't gone to the centers -- World Trade Center 

4 environmental health centers. And some of them -- they 

5 say oh, they want to -- they have their own doctors, 

6 their own pulmonologists. So meanwhile, you know, 

7 there's not a lot of -- not a lot of pulling together of 

8 the data.

9 I mean yesterday I was talking to somebody who was 

10 telling me oh, his -- his asthma has returned. He 

11 hadn't had an -- asthma since childhood and it's 

12 returned with a vengeance, and his pulmonologist, who's 

13 located downtown, was telling -- was telling him that he 

14 did see a spike in -- in pulmonary, you know, problems 

15 with people who are living down there.

16 But we -- we -- so we just need a better way to reach 

17 out and communicate and monitor and educate and outreach 

18 to the community about what's going on and communication 

19 between the medical professionals.

20 And I also wanted to add -- I think somebody had 

21 mentioned before and I wanted to reiterate a concern 

22 that the NIOSH administrative outsourcing will take away 

23 funds available for treatment and the research and 

24 medication that's badly needed by people.

25 And finally I want to just express my appreciation for 
106

1 Mr. Elliott and Dr. Howard for holding this hearing. 

2 And I'm very -- you know, very grateful for the efforts 

3 of everybody who's been involved in -- in shedding light 

4 on this environmental and other issues related to 9/11, 

5 and passing the Zadroga Bill. I want to thank Dr. 

6 Howard, who's -- Dr. John Howard, who's been there with 

7 us from the beginning, and who's also listened to the 

8 concerns of the community and -- and John Feal, the 

9 FealGood Foundation, and John Stewart -- all the Johns -

10 - 9/11 Environmental Action Community Board One, 

11 Representative Carolyn Maloney, Senator Schumer and 

12 Senator -- and Senator Kirsten Gillibrand, who worked 

13 tirelessly to get this -- the Zadroga Bill passed. And 

14 finally -- and I'm sure I've probably left out people --

15 it's like the academy awards -- but I want to thank 

16 Representative Gerald Nadler, who's also been with us 

17 and listened to the community and -- and urged for the 

18 passing of this -- bills from the beginning.

19 So thank you very much.

20 MR. ELLIOTT: Thank you, Diane. William Gleason? Then 

21 we'll have Troy Rosasco and the Reverend Terry Lee.

22 MR. GLEASON: Crib notes, helps. My name is William 

23 Gleason. I'm an FDNY EMS lieutenant. I have lung 

24 disease. I've lost 49 percent use of my lungs thanks to 

25 9/11. I have GERD. I have been operated on and had 
107

1 surgical procedures more than 20 times post-9/11. And 

2 my life is only about 25 percent of what it was prior to 

3 9/11.

4 I still would have gone, even knowing. We would have 

5 used a little bit better caution. My job was to save 

6 lives.

7 I lost 141 friends on that day, and I've lost many more 

8 post-9/11. I sent people to Ground Zero to work. I 

9 supervised people there. I've watched them get sick and 

10 I've watched them die.

11 We have a moral obligation to help the rescuers. We 

12 also have a moral obligation to help the residents down 

13 there who were exposed. Worker's Compensation is a 

14 short-term, not a long-term, health care program. And 

15 unfortunately, the rescuers are trapped in that system.

16 The disease and mortality tracking, the Centers of 

17 Excellence or the City Department of Health needs to 

18 take the lead. If you go to CDC, New York State and 

19 even the City Medical Examiner's web site, all three 

20 have different statistical numbers. No one is on the 

21 same page there.

22 The Centers of Excellence need to share information in 

23 health care and trends that will better produce patient 

24 outcomes. For the established World Trade Center 

25 rescuers who participate with a Center of Excellence, I 
108

1 recommend that an insurance program be instituted to 

2 cover all of their health care needs. Health care would 

3 be 100 percent coverage with no deductible. This would 

4 address the issues of reporting medical problems and 

5 treatment to the Centers of Excellence, and also resolve 

6 conflicts between Worker's Compensation and their health 

7 insurance that can cause unnecessary patient care 

8 delays.

9 Our health problems sometimes blur the lines between 

10 what is 9/11-related and what is not. The money 

11 normally spent by the employers and the government for 

12 the health care and the Worker's Comp can be used as a 

13 source of funding for this insurance. The program could 

14 be administered by an agency such as Medicare, that 

15 already has the resources established to help keep costs 

16 down.

17 We need help. Studies and research are important. 

18 Unrestricted access to health care will save lives. 

19 It's a matter of honor.

20 I do this because I feel I have to. The best patient 

21 advocate is a patient, and I'm a patient. So I'm asking 

22 you -- I'm actually begging you, please help us. I'm 

23 watching friends die. I sent them there.

24 Thank you.

25 MR. ELLIOTT: Thank you, William. Troy Rosasco, and 
109

1 then Reverend Terry Lee.

2 MR. ROSASCO: Thank you. First I'd like to thank Dr. 

3 Howard and Mr. Elliott for having this public meeting. 

4 It's very helpful to all of us.

5 Secondly I'd like to thank all those people in the room 

6 who were so important. I don't think any of us would be 

7 here today without those who pushed so hard for the 

8 Zadroga Act, especially the FealGood Foundation, so I 

9 thank you all.

10 I want to be short today and re-emphasize a couple of 

11 themes I've heard already this morning. And those 

12 themes are as follows: There are two particular areas 

13 of illness that I think are not being treated correctly 

14 here. Let's take for -- first, cancer. It's absolutely 

15 imperative that cancer be made part of the NIOSH 

16 program. We all know that in the rush of the lame duck 

17 session we weren't able to get every single detail of 

18 the Zadroga Bill on there that we would have liked. Now 

19 it's up to an administrative agency, of which you are 

20 the people who will implement the Zadroga Act, and now 

21 it's up to you to implement it correctly and to do the 

22 right thing. And the only way you can do that is to 

23 include cancer, and the cancers we've been talking 

24 about.

25 I can't understand how the federal government would not 
110

1 include cancer as part of this program when so many 

2 other governmental agencies have already done so. I won 

3 my first nasopharyngeal cancer case for a Verizon worker 

4 back in 2003 through the New York Worker's Compensation 

5 board. I had an NYPD officer in my office yesterday who 

6 is out on the WTC presumption bill for colon cancer. 

7 Now if that's good enough for other governmental 

8 agencies, it should be good enough for the federal 

9 government. And there is absolutely no reason why these 

10 cancers that we know can come about from the toxins that 

11 everybody knows were cancerous down there should not be 

12 covered.

13 In addition, there's not a client that doesn't come into 

14 my office who does not include, as part of their 

15 illnesses, post-traumatic stress disorder. Whether or 

16 not they've been treated for it or not is a different 

17 story. As we all know, sometimes it's hard to bring 

18 those who are suffering from post-traumatic stress 

19 disorder to treatment. But nevertheless, that outreach 

20 has to be done for those people with post-traumatic 

21 stress disorder. We know enough. We don't need any 

22 more research on post-traumatic stress disorder. It 

23 goes back to World War I when they called it shell 

24 shock. A hundred years of research is out there. Do 

25 not make the first responders and victims of 9/11 wait 
111

1 for years and years and years of research to get them 

2 the help they need today.

3 Do the right thing. Take the leap of faith. It doesn't 

4 take rocket science to sit there and understand that 

5 there's a causality here between those people who were 

6 perfectly healthy prior to being down at Ground Zero, 

7 fresh kills, various and sundry other places along the 

8 debris route, and then got seriously sick the way they 

9 are. You need to do the right thing. You're the 

10 administrative agency that can do the right thing. We 

11 have the law now. Please do so.

12 I say that in all due respect. I know your intentions 

13 are absolutely correct, but we cannot sit by and wait 

14 for research studies and to study it forever while 

15 people die in front of us.

16 Thank you.

17 MR. ELLIOTT: Thank you, Troy. Now we have Reverend 

18 Terry Lee, and then we have four more folks who have 

19 signed up. And so our plan is to go ahead and hear 

20 those four folks, since they may have been here for a 

21 while, before we take a break for lunch. And we may 

22 only take a short break for lunch.

23 So Dr. Lee -- or Reverend Lee.

24 REV. LEE: Thank you. Good afternoon. My name is 

25 Reverend Terry Lee. I am the pastor of the Byways and 
112

1 Hedges Youth for Christ Ministry located in Brooklyn, 

2 New York, migrated in this country 1989, couldn't find a 

3 job. I began to volunteer in the community. On 9/11 I 

4 was serving as a clergy liaison with the NYPD in 

5 Brooklyn South. But on the day of 9/11, seeing all 

6 these police officers responding to Ground Zero, I cried 

7 out to God and I said what can we do? I rushed down to 

8 the precinct. They said "Reverend, please pray." We 

9 began to offer counseling to the local precincts and we 

10 were called also by the Mayor office OEM, Office of 

11 Emergency Management, to sign up into the program as a 

12 clergy crisis responders.

13 And from then we began to go down to Ground Zero to 

14 volunteer our time. I spent days, nights, weeks, months 

15 at Ground Zero as a immigrant volunteering my time. I 

16 worked in the morgue blessing the body parts. I worked 

17 in the piles searching with rescuers. I've seen 

18 hundreds and hundreds of clergy, a rabbi, people from --

19 priests -- from the faith-based community, immigrants 

20 who responded.

21 Now in Brooklyn there is no type of outreach in 

22 Brooklyn. Nobody knows where to go and who to go to. I 

23 thank God for the FealGood Foundation. And when I heard 

24 about them we all went to Washington, D.C. and stand for 

25 this bill to be passed. There is no outreach in the 
113

1 community. We need to know why, and how can we help. 

2 There are people out there that are dying. Many people 

3 from the immigrants community, also. We are looking 

4 forward for your help and for your support. Let us 

5 reach the unreachable. Let us reach out and touch the 

6 untouchable.

7 Right now I've been going to Mount Sinai. I develop 

8 asthma. My wife complaining every night with her 

9 husband. She can't get her proper sleep because I'm 

10 wheezing and I'm snoring, I'm turning in my bed. My 

11 daughter, she's going through the struggle.

12 We have work to do as immigrants. I love America. 

13 America is a place where we can come as immigrants, and 

14 from holding the door to owning the building, from 

15 packing the bag in the supermarkets to owning the 

16 supermarket, from being a delivery man who delivering 

17 the food from the restaurant to owning that restaurant. 

18 I want us to continue to work together.

19 We're at war against the enemy. Churchill recognizes 

20 that. And Churchill call a group of men together, and 

21 Churchill says "The enemy is about to harm us. If we 

22 come together, the enemy would have a harder task 

23 harming us together. But if we don't come together, the 

24 enemy will harm us separately."

25 We want to thank all of you that are in the fight and 
114

1 making sure that we get the resource that is available. 

2 But let us remember, those families that have not been 

3 reach, don't know who to go to, who to call. They are 

4 dying, and they are waiting on us. Let us reach out and 

5 touch. God bless you.

6 Thank you.

7 MR. ELLIOTT: Thank you, Reverend Lee. Now we have 

8 Barbara Caporale.

9 MS. CAPORALE: Hi, my name is Barbara Caporale and I'd 

10 like to thank you for holding these hearings and -- and 

11 celebrate the passage of this Bill. I am currently 

12 doing pediatric outreach for the survivors of the World 

13 -- of the World Trade Center environmental center 

14 program. Prior to that I was doing outreach for DC-37 

15 members, for municipal workers. And prior to that I did 

16 outreach and organizing for the affected/neglected town 

17 hall which we held at St. Peter's which forced the City 

18 to recognize the fact that health care for -- for 

19 workers and residents needed to be funded and the 

20 programs needed to be set up to continue to this point 

21 now where we have federal funding finally, thank you 

22 very much.

23 Prior to that, I was community organizer for Rebuild 

24 Spotlight on the Poor Coalition, which was an emergent 

25 organization begun after 9/11 of over 25 community-based 
115

1 organizations and legal advocacy groups that worked for 

2 social, economic and environmental health justice for 

3 the monies that were given and the programs that were 

4 set up to help New York City recover after 9/11.

5 Primarily I am a resident and a mother in the original 

6 frozen zone located below 14th Street in New York City, 

7 which is also the boundary of the LMDC* small business 

8 retention grants.

9 Firstly, I request that Dr. John Howard be the 

10 administrator of this program as he is most familiar 

11 with the programs and the excellence of care, the 

12 players and the people, and has come to this city 

13 innumerable times to hear from us about our symptoms and 

14 about our needs, and has been very responsive and 

15 supportive in addressing this on our behalf. And I 

16 thank you, Dr. Howard. I hope that happens.

17 Secondly, I hope that this bill helps -- that -- that 

18 all the different administrative details in this bill 

19 really respects the existing programs and how they are 

20 being run, the medical directors and the administrators 

21 of it, and that they don't get tied down in lots of 

22 minutiae and paperwork that take them away from the main 

23 -- the main -- the main mission, which is to provide 

24 treatment to those who are impacted and -- and need 

25 that.
116

1 I don't know if I -- I mentioned that I was also 

2 community-based participatory research outreach liaison 

3 during the World Trade Center expert technical panel 

4 hearings for community and labor, which allowed the 

5 rescue and recovery workers and the -- the community 

6 workers and residents to express their health impacts. 

7 And unfortunately that panel process was ended 

8 prematurely by the USEPA before it fulfilled its mission 

9 to determine the extent of health impacts from 9/11, 

10 both geographically and symptomatically, and also to 

11 establish a proper cleanup protocol which would have 

12 alleviated a lot of our problems of -- of -- of being --

13 our symptoms being reactivated and re-exposed during 

14 this whole demolition, construction, rebuilding process.

15 Regarding the outreach that is under this, I hope that 

16 you will respect the Centers of Excellence and their 

17 community advisory committees, and the people that have 

18 been in place, who know the populations, who are 

19 familiar with the needs -- yet unmet -- and not just 

20 issue a general RFP to anyone who has the ability or 

21 staffing to be able to write a grant to do outreach.

22 And thirdly -- I mean lastly, I will tell you that I --

23 I coined the phrase "affected/neglected", and I'm very 

24 concerned that I still, according to this bill, am part 

25 of the population that is still affected and neglected. 
117

1 This bill is written with a boundary line at Houston 

2 Street. The original frozen zone was 14th Street. My 

3 child was in a day care, and I will submit into the 

4 record the New York Academy of Medicine's pediatric day 

5 care study one year after 9/11, which shows in her 

6 school alone 32.3 percent mutually exclusive statistics 

7 of children who had never been diagnosed with asthma or 

8 who had some kind of respiratory symptom one year later 

9 in a population that nationally would be seven percent. 

10 The entire study of all the day cares shows 41 percent 

11 mutually exclusive information -- I'll give you that.

12 I also want to show you the Department of Health's 

13 clinical guidelines for childrens (sic) and adolescents 

14 exposed to World Trade Center disaster. I'm very 

15 concerned about the children in this area between 

16 Houston Street and 14th Street. That is the catchment 

17 that has been recognized by the existing World Trade 

18 Center environmental health center program. It is the 

19 catchment that was reached out to in a letter from the 

20 Department of Education, the Department of Health and 

21 New York City health and hospitals population. 

22 Unfortunately, this letter -- the mailing with the DoE 

23 did not get to many households that -- that have these 

24 populations. And our pediatric outreach just went into 

25 full effect at this, you know, late fall.
118

1 So I am concerned about this 60-day waiting period and 

2 I'd like to know, does that mean for people who are not 

3 currently patients in these programs as the Centers of 

4 Excellence, or does that mean people who do not fit into 

5 one of the criterias (sic) that are listed as, you know, 

6 the area of -- you know, all the different qualifying 

7 criteria, because I think that the population between 

8 Houston Street and 14th Street -- first of all, 60 days 

9 is too long for anybody to wait for medical care.

10 Secondly, if it's only for that -- you know, for anyone 

11 outside of those qualifiers, I'm asking you to take into 

12 consideration the way that the intakes do at the Center 

13 of Excellence, and they look for a symptom and they look 

14 for exposure, and they understand the populations. 

15 These populations are in the data that shows that 

16 survivors and responders have similar symptoms, and 

17 they've already been included in studies but the 

18 populations have not been outreached to. I'm very 

19 concerned about our children. I'm also concerned about 

20 the children of our first responders and others who --

21 who lost a loved one during -- after 9/11. The mental 

22 health qualifications for pediatric program never set a 

23 geographic boundary. You can see how upset our 

24 responders are and the fight that they've been through, 

25 and you can know that their children have mental health 
119

1 impacts, as do the residents in the survivors' program, 

2 their children, especially after we had to fight for so 

3 many years for recognition. So I'm hoping that this 60-

4 day and the -- and the zone is -- is made an exception 

5 because it's -- it's just too long a period and that we 

6 need to include the area that had been recognized in the 

7 original federal boundaries, which is Houston to 14th 

8 Street.

9 Thank you very much.

10 MR. ELLIOTT: Thank you, Barbara, for those comments. 

11 Robert A. Grachow?

12 UNIDENTIFIED: Grochow.

13 MR. ELLIOTT: Grochow.

14 MR. GROCHOW: Good morning. I'd like to thank Mr. 

15 Elliott and Dr. Howard for allowing us to speak here 

16 today and share with you certain information that we may 

17 have that's relevant to you.

18 My name is Robert Grochow. I am an attorney. Our 

19 office, along with my partner, Greg Canata*, has been 

20 honored to serve as one of the plaintiffs' lead counsel 

21 in the federal litigation, and we are here to just 

22 briefly touch upon what we feel should be the inter23 relationship between the health aspect of the bill and 

24 the victim compensation aspect of the bill. And I know 

25 that today there are many, many injured people in the 
120

1 audience, victims of 9/11. I see several of my clients 

2 here. I'm honored to represent Alex Sanchez, who I 

3 believe spoke earlier, and Manny Cheko for many years.

4 And the -- before I get into the interrelationship, I 

5 just want to share two short conversations we've had 

6 over the years with some of the directors of the 

7 programs at Mount Sinai. One came after I had the 

8 opportunity to speak to some of their patients, and I 

9 asked the doctor -- and this goes back many years --

10 what can you tell us statistically -- and this was 

11 probably back in '04 or '05 that I had this conversation 

12 -- about the injuries that we haven't seen yet? And 

13 quite frankly, cancer wasn't really on the radar screen 

14 as early as '03 and '04 for -- for most people. As you 

15 know, cancers generally have a -- a time gap before 

16 they're actually going to start showing up, sometimes 

17 ten years, sometimes 12 years, sometimes 15, 18 years. 

18 And I said to the doctor, what can you compare this to? 

19 And she said "Well, we were involved, to an extent, with 

20 the telephone company" -- it's now called Verizon; it 

21 wasn't in those years, I believe it was in the '70s or 

22 '80s when the entire building went up in flames, and 

23 many, many people were injured in that building. And 

24 toxins, some of which are the same toxins that leaked 

25 into the air following the 9/11 attack, from the 
121

1 interior workings of the telephone company building 

2 caused significant damage to their employees. I said 

3 "Well, are you going to draw a comparative study between 

4 all the people in the phone company building and the 

5 9/11 people?" And the answer was a shocking "We'd like 

6 to, but most of them are dead."

7 So that is a really, really somber thought to think 

8 about. And as I look out into the audience and as I 

9 meet with my clients on a daily basis, and as we have 

10 said in court, we unfortunately feel that many of our 

11 clients are dying a slow and uncomfortable death. And 

12 the -- the inter-relationship between the health fund 

13 and the victims is -- this -- this brings this to light.

14 When the victims' compensation fund aspect of the bill 

15 receives its regulations by the special master, or 

16 regulators from the Department of Justice in Washington, 

17 I would hope and urge that the medical community play an 

18 integral role in association with the federal 

19 regulators, and not stand back. And that you give them 

20 guidance as to the manner in which they should formulate 

21 what injuries should be included. For my money, it 

22 should be an open door. All injuries -- yes, obviously 

23 subject to some causality, but all injuries should be 

24 the first step. They should not come out with a menu 

25 and say you either fit into this menu or you don't fit 
122

1 into this menu. Because if you do, the fear that has 

2 been echoed by virtually everybody in this room is 

3 what's going to happen to the cancers? So if the 

4 medical community and the health aspect of the bill does 

5 not recognize certain injuries such as cancers -- I mean 

6 the asthmas are almost a given, I assume. The COPDs, 

7 the RADs, are a given. But if asthma (sic) is going to 

8 be the sticking point, then let the medical community 

9 come forward and educate the federal legislators. And 

10 if you educate them only based upon the scientific data 

11 that is available today, we fear that you will be 

12 leaving out those cancers that the medical community has 

13 not yet actually formally recognized as being causally 

14 related to the World Trade Center because it takes so 

15 many years for that to happen. And by the time that 

16 happens, the fund will be closed. The health benefits 

17 may be shut down. We don't know what the -- Washington 

18 is going to do in the future.

19 So I urge that there be this open communication and 

20 influence by the health portion of the Act on the 

21 victims' compensation portion of the Act.

22 Thank you for your time. Thank you.

23 MR. ELLIOTT: Thank you for those comments, Robert. 

24 Mike Kenny. I think I pronounced that one right.

25 MR. KENNY: Good afternoon. Thank you for having me 
123

1 here, Mr. (sic) Howard, and to the good doctor.

2 I'll tell you a little bit about myself. Forty-nine 

3 years ago I came into this world kicking and screaming. 

4 I hope to go out that way, just better be with my boots 

5 on. Today is my birthday.

6 (Applause)

7 On September 10th I was a jaded New Yorker. I was 

8 working on Rikers Island. After the towers came down I 

9 started loading scout packs, sending emergency equipment 

10 down to the site. I worked for the Department of Design 

11 and Construction. I spent seven months at the site, 

12 overseeing the site and the cleanup, rescue and 

13 recovery.

14 Today I'm a vice president in Local 375. We have over 

15 7,000 members, and many of our members, working for 

16 different agencies -- Department of Design and 

17 Construction, New York City Transit Authority, 

18 Department of Transportation, Department of Buildings, 

19 Department of Environmental Protection, and Department 

20 of Health -- were down at the site. Some of those 

21 members have lost kidneys, testicles, lumps in their 

22 throats, lot of illnesses that's not on the chart.

23 It was an honor for me to go down to the site. I never 

24 expected I would ever be in a location like that and 

25 doing the job I was doing. We heard the doctor before 
124

1 speaking about mustard gas. One night when I was down 

2 there, it was a Sunday night, we had chillers that were 

3 covered -- were packed with freon that went on fire. 

4 That's mustard gas. That is mustard gas. I had a 

5 battalion chief yelling and screaming at me on a Sunday 

6 night to find some argon gas 'cause argon gas will 

7 smother out and stop a freon fire. Very hard to find, 

8 Sunday night, argon gas. We ended up covering it with 

9 sand, putting it out. But that fire was right there.

10 Mayor Giuliani said the fires were out in January. Man, 

11 I seen every color smoke coming out of that hole. I 

12 seen steel being lifted that was melted and bending. 

13 Those fires were going a lot longer than January.

14 By winter 2002 I could not get out of bed. I didn't 

15 care about Christmas. I didn't care about the holidays. 

16 I was a mess. I had actually left the site April 13, 

17 2002 with a broken collarbone and not the man I was when 

18 I went down there. I'd gone back to work in September 

19 because I was a mess, but I needed to get back to work. 

20 I needed to climb out of that hole.

21 I did every single thing I could do to try to get 

22 healthy. I went to the New York detox, spent hundreds 

23 of days there detoxing. Serving those who serve, I took 

24 those pills. Mount Vincent's World Trade Center health 

25 center, I went to. Red Cross, I went to -- life net 
125

1 counseling, I went to it. I did everything.

2 Okay, I'd like to tell you some of my illnesses that are 

3 not on this list. I have sores all over my body that 

4 ooze out nightly. My wife changes the sheets every day. 

5 Now I have skin cancer -- which is coming from these 

6 sores, if you ask me, but I'm not a doctor.

7 I'm a big guy, kidney stones. Kidney stones are 

8 painful. Give me that morphine, give it to me 'cause I 

9 don't want to feel it. All right? What do they tell 

10 you to do? Scream, and catch the stone so it could be 

11 examined. What comes back? Non-organic material. My 

12 urologist tells me I'm crazy. How is it getting into my 

13 system? Seven months at Ground Zero might have 

14 something to do with it.

15 I have a little prepared speech here, bear with me.

16 Thank you for letting me come here. We urge NIOSH to 

17 ensure that there is agreed-upon, consistent quality of 

18 medical care and treatment provided to all participants 

19 in the World Trade Center health program. Okay?

20 What we would like to see. The World Trade Center 

21 health program needs to be patient-centered. The visits 

22 should be designed in a way that decrease stress and 

23 promotes the well-being of the patient, as much as can 

24 be possible during a medical visit.

25 Participants should be treated with dignity and results 
126

1 -- and respect.

2 Follow-up appointments. Some participants require 

3 multiple appointments because they need to see their 

4 regular doctors as well as specialists.

5 Participants request that multiple appointments be 

6 scheduled on the same day, to avoid making multiple 

7 trips, should that -- and this should be accommodated.

8 When follow-up appointments are required by specialists, 

9 the staff should take care of such appointments for, and 

10 communicate their necessity to, the participants ASAP. 

11 Let us know what's going on.

12 Schedules should be coordinated to best meet the needs 

13 of participants. For me, still working with the City of 

14 New York, I get 12 sick days a year. I go to the doctor 

15 for World Trade Center medical monitoring, that's six 

16 right off the bat, guaranteed. I get the flu, that's 

17 another three, and what do I have left? I have nothing 

18 in the bank, and my boss doesn't want to hear about it. 

19 They well forgot 9/11 ten years after the fact.

20 If participant's medical issue is urgent, a follow-up 

21 appointment should be scheduled without delay. We have 

22 to wait months aft-- after we're told to get an 

23 appointment.

24 There has to be enough staff to monitor follow-up 

25 appointments.
127

1 Once the appointment is set, verbal communication should 

2 be made to the participant. I schedule my appointments 

3 six months in advance. I schedule three appointments. 

4 When it comes time for me to go to my appointments, I 

5 get a cancellation every time for one of the doctors 

6 'cause of schedule conflicts. I try to put it all 

7 together so that I'm not taking time off from work.

8 I need a referral to go see a specialist, is required 

9 for every time I go see that specialist. I've already 

10 seen the specialist. Why can't I just schedule and 

11 appointment and go back and see the specialist?

12 Once a participant has been referred by a treating 

13 doctor, participant should be able to make follow-up 

14 appointments directly with the specialist. Currently 

15 the scheduling of all appointments has to be done 

16 through the treating doctor. So it's an overlap that 

17 wastes my time.

18 Bedside manner. Our community was involved in an 

19 unprecessident (sic) environmental and psychological 

20 incident, and we are battling significant physical and 

21 emotional conditions. I do better when I ad lib. I 

22 hate to read from the scratch.

23 We ask that doctors and staff demonstrate the 

24 appropriate sensitivity and compassion when dealing with 

25 our unique community.
128

1 There should be a benefit coordinator who would be 

2 responsible for assisting participants in obtaining the 

3 benefits for which they may be eligible -- disability 

4 benefits, Worker's Comp benefits, scholarships for the 

5 kids maybe.

6 In this way participants do not discover about these 

7 benefits after the fact.

8 The last thing is consider PTSD an illness that stands 

9 on its own.

10 Now I'd just like to tell you a little story about -- I 

11 was down lower Manhattan the day of the Deutsche Bank 

12 fire, and I was with my son. He's 16, so he was 12. He 

13 wants to go closer to the fire. I want to run. I don't 

14 want to be nowhere near. Street was like a frozen zone. 

15 Car was parked in the frozen zone. I couldn't get out 

16 of there. I took him over to -- near 17th, try to spend 

17 some time. The smoke, the smell. I was going on a two18 week vacation down to the beach after that. That first 

19 week I was miserable. I couldn't put it all together. 

20 Later on I'm in Chinatown when Air Force One decides to 

21 fly over the Empire State Building all the way down to 

22 the Statue of Liberty. I swear to God, I thought my 

23 world was going to end that day. It took me to then to 

24 connect the dots and figure it out, that this is serious 

25 stuff that I'm dealing with. And how do you go around -
129

1 - when I was raised not to ask for help, but now I 

2 realize I need to ask for help. And that's why I'm 

3 here, asking for help from you guys. You guys have the 

4 power to do it. 9/11 happened tomorrow, I'd be down 

5 there, knowing everything that I know now.

6 Got some other little notes here that I just want to 

7 look at before...

8 That's pretty much all I've got to say. Thanks so much 

9 and I hope you guys really do the right thing. We're on 

10 the road to recovery. This menu of options you have, 

11 you should treat us like a patient, take care of 

12 everything. You know what? My kidney stones are, in my 

13 eyes, directly related to my time down at Ground Zero. 

14 But to be told at the treatment center "Oh, you've got 

15 to go see your own doctor for that." You know what? 

16 I'm taking these steroids they're giving me and my bones 

17 are getting weak and my bones are starting to break, 

18 they should be all treated together. You've got to look 

19 at it as a patient. Get us well. Get us healthy again 

20 so that we can be there next time you need us.

21 Thank you.

22 MR. ELLIOTT: Thank you, Mike. Keith, we're going to 

23 hold you just a moment, Keith. We've got two others 

24 that haven't spoken. You spoke once, so if you wouldn't 

25 mind having a seat.
130

1 Joel Kupferman, and then Kimberly Flynn.

2 MR. KUPFERMAN: Thank you very much for having these 

3 hearings. I'm Joel Kupferman. I'm the executive 

4 director of the New York Environmental Law and Justice 

5 Project. I'm the environmental justice committee head 

6 of the National Lawyers' Guild. I was the environmental 

7 counsel for the firefighters' union after 9/11. And 

8 it's -- I guess this is an emotional moment for me after 

9 all I've gone through with 9/11, and I think the 

10 important thing is that we really thank you for letting 

11 these people speak.

12 But after two, three weeks and the first five, six 

13 months, a lot of the information I got about 9/11 --

14 besides grabbing the samples there -- were from my --

15 the phone calls that came to me after 5:00 o'clock from 

16 a lot of City workers and city staff people that were 

17 scared to speak out to their bosses, to the Mayor, to 

18 everyone else, who were basically told "If you keep on 

19 complaining about what you have or what you saw, what 

20 you were exposed to, you're going to lose your job." 

21 Okay? We've got to remember that. Okay?

22 So when you're doing your science research and trying to 

23 figure out what's out there, you have to put it in 

24 historical context that the city did not want to hear 

25 from these people. The city, up until now, has spent 
131

1 $500 million or so from the captive fund to deny their 

2 claims. Okay? The city health department refused to 

3 follow the law. We pointed out that under New York 

4 State health law, there's something called the New York 

5 State lung disease registry, and it states (reading) 

6 Report of occupational lung disease. Every physician, 

7 health facility and clinical laboratory in attendance on 

8 a person with clinical evidence of occupational lung 

9 disease, as characterized in Section 22.5 of this Part, 

10 shall report such occurrence to the State Commissioner 

11 of Health within ten days. Such report shall be on such 

12 forms prescribed by the State Commissioner of Health.

13 This was even -- it had a whole list, and basically said 

14 that people exposed to toxic dusts or toxins, it had to 

15 be reported. The worst violator of this was the New 

16 York City health department and Health and Hospitals 

17 Corporation. Okay? So when you're looking at these 

18 figures, you have to point out that it was an under19 count and why there was an under-count.

20 I fortunately got down to the site on behalf of a -- a 

21 cop, the union delegate, they got me down, it was 

22 concerned about people exposed to -- and we grabbed 

23 samples. And those samples we sent to two labs, and we 

24 found five percent asbestos. And moreover, we found 90 

25 percent fiberglass, and that was something that we kept 
132

1 bringing up in the beginning and it was -- seemed to be 

2 ignored. But after a little bit of research we found 

3 out that fiberglass is tiny, needle-like particles, 

4 probably causing much of the reported irritation and 

5 pain in the eyes and respiratory system. Fibers are 

6 usually coated with a thin later of formaldehyde7 containing resin. Long-term health damage is also 

8 associated with fiberglass. The national toxicology 

9 program lists respirable-sized glass fibers as 

10 reasonably anticipated to cause cancer. And the 

11 international agency for research in cancer lists 

12 certain other glass fibers as possible carcino--

13 carcinogenic to humans. So we have the fiberglass 

14 issue, that I think was basically, then and now, you 

15 know, brushed under the rug.

16 Then we just went by DEC reports -- DEC handed out -- I 

17 wish you could see this -- a poster that talked about 

18 the bad chemicals that people are exposed to. I'll send 

19 you -- okay. It's a poster, and it basically says: PM20 10 wanted for -- and this is what the DEC said back then 

21 -- description, PM-10 is the generic name for 

22 particulate matter less than ten microns in diameter. 

23 Crime: PM-10 can reduce visibility and make it 

24 difficult to breathe. It has been linked to cancer and 

25 heart attacks. Cause: PM-10 comes from burning fuel in 
133

1 power plants, factories, cars and trucks, as well as 

2 dust blowing from roadways, fields and construction 

3 sites. EPA -- it's well documented that fires burning 

4 at the -- at 9/11 lasted for weeks and weeks and weeks.

5 I fortunately became the attorney for the firefighters, 

6 and I represented a lot of the workers and residents in 

7 lower Manhattan. And one of my concerns, besides the 

8 fiberglass and the under-count in cancer, is your 

9 boundary lines; that your boundary lines in the 

10 catchment area is arbitrary. One of the places that I 

11 was sent to was the cancer house in Brooklyn, in 

12 Redhook, dealing with -- with post-9/11. A lot of these 

13 trucks that went down to the -- to 9/11, carried the 

14 World Trade Center dust back into their fire houses. 

15 One of the firefighters pointed out to me that the dust 

16 from 9/11 didn't just go over -- let me just -- can I 

17 finish? Okay. Didn't just go over the East River, went 

18 under the East River. And the fact that it was carried 

19 by trucks through Brooklyn to Freshkill -- okay? That 

20 dust was -- is so bad and not covered, that firefighters 

21 from their fire house had to put fires out in the truck. 

22 The embers were still burning. Those -- those trucks 

23 went to Freshkill.

24 We were contacted by the detectives association, you 

25 know, to ask in the beginning why the detectives were 
134

1 not given masks and the FBI agents were. So -- short 

2 three minutes -- I'm really concerned, after putting up 

3 a fight to get information out to all those people out 

4 there about the cancer risk and everything else, that 

5 just going forward -- I'm in contact with people down in 

6 the Gulf Coast -- that people are scared to speak out. 

7 And also speaking to a lot of the firefighters, they 

8 were scared to speak out. And also a lot of their -- I 

9 think their illness has come from the angst that they 

10 weren't allowed to speak out, and I think that's really, 

11 really important for you to put it, you know, into it.

12 And also that you should really be wide in terms of 

13 receiving information, that you shouldn't rely on the 

14 people that were paid to tell everyone out there that 

15 there was no problem, and then got paid to gather the 

16 evidence. All right? I think it's really wide and it 

17 was really inspiring this morning with someone talking 

18 about community-based information. You have to listen 

19 to these people, and you have to make sure your phones 

20 are open past 5:00 o'clock to actually hear these people 

21 that are not scared to speak and told that they're going 

22 to lose their jobs or their going to lose their -- their 

23 homes for speaking out. So I urge you to keep this wide 

24 open, you know, view.

25 And also to seek all the records, to look at Worker's
135

1 Comp and look through all those filings that people did. 

2 Okay?

3 And also the undercounted population 'cause I represent 

4 a lot of immigrants, incl-- including doing cases in 

5 this building here. They're scared to speak out to 

6 anyone. So you've got to -- really got to go out of 

7 your way to make sure that they can speak and that 

8 they're protected.

9 So thank you very much.

10 MR. ELLIOTT: Thank you, Joel, for those comments. Now 

11 we have Kimberly Flynn, and after Kimberly we'll break 

12 for lunch, and then we'll come back to finish up.

13 MS. FLYNN: Can everybody hear me? Close, close, close, 

14 okay.

15 I'd like to thank Dr. Howard for all of his years of 

16 service to 9/11 survivors and responders, and I'd like 

17 to thank NIOSH for the opportunity to testify.

18 I'm Kimberly Flynn and I serve as community co-chair of 

19 the community advisory committee to the World Trade 

20 Center Environmental Health Center, the WTCEHC. This is 

21 the World Trade Center of excellence that serves the 

22 residents, students and area workers. Known as the 

23 survivor program in the Zadroga Act, the environmental 

24 health center operates at three clin-- operates at three 

25 sites, at Bellevue, Gouverneur and Elmhurst Hospitals, 
136

1 and currently cares for a patient population totaling 

2 more than 5,000.

3 In the weeks and months after 9/11, not only were 

4 residents, school parents and others left to struggle on 

5 their own, to protect themselves and their children from 

6 unprecedented toxic exposures, but it is also the case 

7 that as people became sick from those exposures they had 

8 no access to accurate environmental health information, 

9 effective and timely testing or cleanups, appropriate 

10 public health guidance, or proper medical evaluation or 

11 care. The negligence of the EPA and other federal, 

12 State and local agencies constitutes a massive failure 

13 of our government to take the legally-prescribed actions 

14 that would have protected the very people who would come 

15 under attack from suffering still more harm from the 

16 health hazards released in that attack.

17 The EHC was formed in direct response to grassroots 

18 activism, outreach and advocacy by community and labor 

19 groups, working to address these globally-denied health 

20 impacts to the community. The community brought its 

21 unmet health needs to Dr. Joan Reibman at the Bellevue 

22 asthma clinic, and Bellevue responded to the community's 

23 needs when no one else would. From the beginning the 

24 WTCEHC recognized the importance of working closely with 

25 the diverse community and labor groups representing the 
137

1 affected neighborhoods as a partnership to ensure that 

2 the WTCEHC's 9/11 health services would meet the needs 

3 of the population it serves.

4 The WTCEHC rests on the foundation of New York City's 

5 municipal hospital system. Patients receive 

6 environmental and mental health treatment from an 

7 interdisciplinary, highly skilled team of specialists 

8 with established expertise in WTC illness.

9 In addition, and crucially, translation services, 

10 benefits counseling and other critical services are 

11 offered, enabling patients to access care easily. An 

12 expanded network of community, labor and advocacy 

13 organizations is now working in partnership with the 

14 WTCEHC as its community advisory committee to ensure 

15 best fit between the services it provides and the 

16 evolving health needs of the diverse affected 

17 populations in the community.

18 The overriding goal of this collaborative work between 

19 the EHC and the CAC has always been improving health 

20 outcomes for the affected lower Manhattan residents, 

21 students and area workers. And all regulations should 

22 be formulated to strengthen the EHC as the New York City 

23 survivor Center of Excellence under the Act, and to 

24 maintain the ease of access to care and the standards of 

25 effectiveness the patients currently benefit from at 
138

1 WTCEHC.

2 We understand that NIOSH is considering contracting out 

3 a wide range of functions and responsibilities to 

4 information technology contractors such as Northrop5 Grumman, who are on a list approved by the Centers for 

6 Disease Control. We would appreciate clarification on 

7 which functions and what the rationale is for 

8 outsourcing these functions. When there are scarce 

9 resources for the medical program, we ask is this the 

10 most effective and appropriate use of government 

11 dollars.

12 In addition we are concerned that the outsourcing of key 

13 administrative functions may disrupt the patient center 

14 delivery of services, the development of a community --

15 of community and labor-based outreach techniques, and 

16 the establishment of a data center that operates on a 

17 community-based participatory research model.

18 And I just want to add a few other concerns. The terror 

19 watch list requirement we believe may serve as a 

20 potential barrier to care, and I have to say, as 

21 somebody who's done a great deal of outreach over the 

22 years, that explaining to residents who were harmed 

23 because they came under attack by terrorists on 9/11 

24 that their names will be given to the Department of 

25 Homeland Security so that they can be checked against a 
139

1 terror watch list, and it can be determined that they 

2 are not terrorists, is a really, really tall order. I 

3 can tell you that the people that I have explained this 

4 to thus far were confused, to say the least, and -- and 

5 many of them had an immediate negative response.

6 Also we are concerned that there may be some changes to 

7 the enrollment process that will end up posing a barrier 

8 to care for the diverse community of survivors served at 

9 EHC.

10 On the subject of a survivor data center, we support a 

11 survivor data center as an active disease surveillance 

12 initiative which is fully staffed and funded, and fully 

13 integrated with the work of EHC. We believe it's 

14 essential that we conduct population surveillance for 

15 WTC impacts on downtown residents, local workers and 

16 students, and we think it's especially critical because 

17 the vast majority of the populations currently being 

18 monitored are adult white male responders. We need to 

19 know more about the impacts to women. We need to know 

20 more about those exposed as children and seniors. And 

21 we need obviously for new emerging conditions to be 

22 captured by the data center.

23 Protective public health policy actually rests on an 

24 understanding of impacts along the dose response 

25 continuum. We need to know how little it takes to cause 
140

1 harm, especially in the earliest years of life and in 

2 the womb.

3 Which brings me to the needs of children, of those who 

4 experienced 9/11 as children. Due to their development, 

5 behavior and physiology, children are more susceptible 

6 than adults to being harmed by exposure to 9/11 -- to 

7 all environmental toxics (sic). It is unacceptable that 

8 those who were most vulnerable to harm, both 

9 psychological and environmental harm from WTC exposures, 

10 have actually been the least studied.

11 The New York City Department of Health and Mental 

12 Hygiene estimates that some 30,000 children were living 

13 or attending school in lower Manhattan on 9/11. And 

14 though there has been far too little research, a growing 

15 number of studies have documented serious and lasting 

16 9/11-related physical and mental health impacts on 

17 children and adolescents. In October 2008 DOHMH WTC 

18 health registry found that post-9/11 asthma prevalence 

19 in children under five years of age who lived or 

20 attended school in lower Manhattan was more than twice 

21 the already high rates for the northeastern United 

22 States. Studies also document age-related mental health 

23 impacts for a range of ages, including increased post24 9/11 alcohol or substance abuse among affected 

25 adolescents.
141

1 There is an overwhelming need for research to fill the 

2 gaps in understanding 9/11 health impacts to children 

3 and adolescents. And there is an overwhelming need for 

4 outreach to this population and their parents. It is 

5 essential to track and treat the cohort of people 

6 exposed to the World Trade Center disaster as children. 

7 Because children have much of their lifetimes ahead of 

8 them, it is critically important that this population be 

9 linked with care and monitored over the long term so the 

10 trends and emergent diseases can be recognized, studied 

11 and, of foremost importance, treated as quickly as 

12 possible.

13 We will be sending you much longer testimony in writing. 

14 Thank you very much.

15 MR. ELLIOTT: Thank you, Kimberly, for those comments.

16 We now will have a -- a break of 30 minutes. We'll be 

17 back at 1:15. We'll take a short lunch here.

18 For those folks who are on the phone, when we come back 

19 from lunch we will entertain comments from the phone 

20 participants, and we have one more individual signed up 

21 on the sheet here.

22 (Recess taken from 12:50 p.m. to 1:28 p.m.)

23 MR. ELLIOTT: Excuse me, if you'll take your seats we're 

24 about ready to restart. We have one sign-up -- one 

25 individual in the room signed up yet, and then we have 
142

1 individual or individuals on the phone to provide 

2 comment, so...

3 (Pause)

4 MR. ELLIOTT: All right, let's -- let's restart if we 

5 can, and Operator, are you on line? Or do we have the 

6 folks on the telephone ready to make presentation?

7 THE OPERATOR: Yes, I do.

8 MR. ELLIOTT: We're having trouble hearing you, 

9 Operator, so we're --

10 THE OPERATOR: Is that better?

11 MR. ELLIOTT: Yes. If you -- if you have any influence 

12 over the volume, if you could turn it up a little more 

13 that would be helpful.

14 THE OPERATOR: I'm up all the way. I'm up all the way.

15 MR. ELLIOTT: Okay. Then we're going to have to have 

16 somebody here turn you up because we can't hear the 

17 phone, so our -- our technical staff here in the room 

18 are working on that.

19 So at this point why don't we go ahead and -- we have 

20 one more individual here in the room, Paul Stein. Paul, 

21 would you like to come up front and give your comments, 

22 and then we'll go to the phone lines. So Mr. Stein, and 

23 then to the phone.

24 MR. STEIN: Thank you, Mr. Elliott, Dr. Howard. My name 

25 is Paul Stein. I'm the health and safety chair emeritus 
143

1 of the New York State Public Employees Federation, 

2 Division 199.

3 Is this better? Okay. My -- my union had many first 

4 responders, as well as many workers working in the area 

5 of Ground Zero, and a number of them did suffer 

6 significant health effects and are -- are sick and 

7 injured at the present time.

8 First of all, I'd like to endorse Dr. John Howard as 

9 administrator of the World Trade Center health program, 

10 not simply because we know from past experience that 

11 he's a skilled administrator and a fine physician, but 

12 because he's a compassionate human being and a 

13 compassionate physician. And despite the necessity of 

14 talking about all the different diseases and all the 

15 coverage that -- that needs to be -- be covered in terms 

16 of -- of health care, we're basically talking about 

17 human beings. We're talking about human suffering. And 

18 Dr. Howard has always shown himself to care about the 

19 individual, not just about the disease. So we hope that 

20 Dr. Howard will be appointed as the administrator.

21 As I sat through the session this morning, it was very 

22 heartbreaking to listen to all of the individuals 

23 talking about their suffering as a result of the public 

24 service they rendered, or as a result of living 

25 downtown, or as a result of -- of working downtown. And 
144

1 it was compounded -- the heartbreaking nature of the 

2 testimony was compounded by the fact that people had to 

3 come here today and practically beg to be helped. These 

4 people deserve -- you know, people deserve coverage. 

5 They're -- they're hurting. They deserve -- they 

6 deserve coverage.

7 And to my mind, we should absolutely do everything we 

8 can within the confines of the laws and the health care 

9 system we have, and this hearing is an important part of 

10 that process, to expand the comprehensiveness of the 

11 coverage of the Zadroga Act through regulations, through 

12 administrative action, and ultimately I hope through 

13 further legislative action, through amendments and 

14 extensions to the bill.

15 But at the same time, to me, there's a certain elephant 

16 in the room here that -- that hasn't been mentioned, and 

17 I think it's always worth mentioning when we're talking 

18 about health care, and that's the fact that we're 

19 fighting over the coverage to a large extent because it 

20 involves money, it involves funding. And in these 

21 economic times especially, and in these political times, 

22 it's very difficult to get -- get funding for health 

23 care coverage.

24 But it should be pointed out that if we had universal 

25 single payer health care coverage, along the lines of 
145

1 the Medicare system, perhaps, that we wouldn't have to 

2 be fighting about how it's going to get paid for because 

3 everyone would be entitled to coverage. That doesn't 

4 mean we wouldn't need to be here today. I want to 

5 stress that. Because the people who are injured as a 

6 result of 9/11 have very special needs. Because of the 

7 nature of the illnesses and how they came about, we have 

8 needs for Centers of Excellence. We have needs for 

9 coordination of medical coverage. We have needs for 

10 coordination of data collection. We have needs for 

11 coordination of research. And a universal health care 

12 system, by itself, would not guarantee any of those 

13 things. So I want to stress that nothing I'm saying 

14 about this larger issue undercuts the need for what we 

15 are doing here today.

16 But at the same time, as an activist and as someone very 

17 concerned with health care and as someone who 

18 previously, in my professional career, was concerned 

19 with the quality of health care coverage in this -- in 

20 this country, I think it's very important that while we 

21 fight for all the things we are fighting for today and 

22 to expand -- to expand coverage and comprehensiveness in 

23 the bill, at the same time we need to go forward and 

24 fight for true universal health care, which will mean 

25 that in the future -- in the future we will not have to 
146

1 be fighting over the money, who's going to pay for --

2 for coverage for particular illnesses when different 

3 disasters arise, whether it's terrorism, whether it's a 

4 natural disaster, whether it's -- whether it's let's say 

5 an explosion at a chemical plant which can cause all 

6 sorts of horrible health effects over a -- very wide 

7 areas.

8 So I'd like to end on that note. What we're doing here 

9 is very important. But in order to ensure it in the 

10 future, we wouldn't have to work as hard to get coverage 

11 for people who are well-deserving of it, that we need to 

12 think about the underlying health care system and work 

13 toward universal single-payer health care. But again, 

14 for -- for situations, for disasters like 9/11, at the 

15 same time we have to make sure in the future that we 

16 have Centers of Excellence, coordination of medical 

17 coverage, coordination of data collection, coordination 

18 of research, to make sure that the unique aspects and 

19 the unique nature of the diseases that arise will be --

20 will be properly and -- and appropriately addressed.

21 Thank you.

22 MR. ELLIOTT: Thank you, Mr. Stein. Now we'll go to 

23 those on the phone line, so if the Operator will allow 

24 the first person to speak, and that person -- and 

25 anybody thereafter -- if you would please state your 
147

1 name clearly and if you feel we -- we would like you to 

2 spell it for us, if you would. So please go ahead,

3 Operator.

4 THE OPERATOR: Our first person is Mickie Singleday* 

5 Hernandez; your line is open.

6 MS. HERNANDEZ: Hi, can you hear me?

7 MR. ELLIOTT: Yes. Yes, we can hear you. Thank you.

8 MS. HERNANDEZ: My name is Mickie Seigle-Day* Hernandez, 

9 and I'm the health and safety director for the 

10 Communications Workers of America in District 1. On 

11 behalf of CWA District 1, I want to thank NIOSH and Dr. 

12 Howard for the opportunity to provide input at today's 

13 public meeting. I'm sorry I could not be there in 

14 person, and I will be submitting detailed comments about 

15 the statute to the docket, but I wanted to make a brief 

16 statement today.

17 On 9/11 CWA had 13 members who died as a result of the 

18 attacks. We also -- our union represents workers who 

19 were responders, as well as area workers in the vicinity 

20 of Ground Zero. So all of these programs that we're 

21 talking about here affect us.

22 Our CWA members who were responders included 

23 telecommunications workers from companies such as 

24 Verizon, and their name has been mentioned a couple of 

25 times today; AT&T, Lucent -- well, what was then Lucent, 
148

1 traffic enforcement agents and supervisors from the 

2 NYPD, New York City sanitation workers; nurses from the 

3 closest hospital, NYU downtown; and news crews from 

4 media and broadcasting companies like ABC, NBC and 

5 others. Our CWA members in the area affected by the 

6 collapse worked for the Port Authority in the towers, 

7 additional telecommunications workers, public sector 

8 workers for New York City agencies, Guild members who 

9 were reporters for The Wall Street Journal and other 

10 publication. In other words, we have -- we represent an 

11 extremely diverse group, many of whom are sick and all 

12 of whom were, and continue to be, affected by the events 

13 of 9/11.

14 So as everybody knows, those members of Congress who 

15 were in opposition and fought against the passage of the 

16 Zadroga Act repeatedly characterized the Act as an out17 of-control slush fund for greedy people wanting to get 

18 free health care. Of course nothing could be further 

19 from the truth. But in order to get the bill passed, 

20 there were many compromises that had to be made to get 

21 past these unreasonable and, in my opinion, immoral 

22 objections.

23 Our union has been part of the fight to establish a 

24 long-term World Trade Center health care program, all 

25 these many years before any program existed, and we're 
149

1 thrilled that the Zadroga Act was finally passed. But 

2 we're not happy with all of the changes that were made 

3 in the bill as part of the necessary negotiations. 

4 However, now we must all live with these changes and 

5 NIOSH is tasked with drafting regulations for the 

6 statute's implementation.

7 So as NIOSH interprets the statute and drafts the 

8 regulations that will become the standard operating 

9 procedures for the program, I'd like to offer some 

10 guiding principles.

11 First I would like to implore NIOSH to draft regulations 

12 that maintain as much as possible the essence of the 

13 current medical program, which is to provide 

14 compassionate and specialized health care and other 

15 services, like benefits assistance, to those who were 

16 affected by the events of 9/11, provided by Centers of 

17 Excellence. And the regulations should improve upon and 

18 expand the care offered.

19 I ask that the mandated changes to the program be 

20 implemented in ways that do not set up a gauntlet of new 

21 barriers to care, for patients or for the providers 

22 providing that care.

23 I ask that the regulations be implemented in a way so 

24 that no patient finds themselves losing the care they 

25 have been eligible for, have been receiving, and so 
150

1 desperately need.

2 I ask that the language in the statute for adding new 

3 conditions be interpreted broadly, so that the proof 

4 needed for adding diseases like cancer and other 

5 illnesses is not solely based on published statistical 

6 analyses of what is essentially incomplete data, so we 

7 are not forced to wait 20 years down the line for an 

8 answer that may never come as more and more people 

9 become ill and die, and too many people already have.

10 I ask that the regulations maintain the medical programs 

11 as patient-centered programs, and that there be 

12 continued and expanded collaboration with patient 

13 representatives and patients themselves.

14 I ask that with all the new certifications and reporting 

15 requirements that patient confidentiality is maintained.

16 I ask that the data centers be able to continue and 

17 expand their important disease surveillance activities, 

18 and have the funds to do so.

19 In closing, I ask that we use this opportunity and time 

20 to build on and strengthen the current program to 

21 provide the best possible care for all those affected by 

22 9/11.

23 Thank you.

24 MR. ELLIOTT: Thank you, Mickie, for those comments. Do 

25 we have anyone else on line that would like to make 
151

1 comment?

2 THE OPERATOR: Yes, we do. We have Steven Petrovich. 

3 Your line is open.

4 MR. PETROVICH: Yes, good afternoon, Dr. Howard. I'm 

5 sorry, I can't talk very well. I was a responder and 

6 chaplain at Ground Zero, and the past year I've been 

7 under hospice pallia-- palliative care, and I'm home8 bound and I ask doctor to please consider -- I've been 

9 paying out of my pocket every month to be -- have 

10 someone come to help me at home. I'm 59 years old and 

11 my whole Workmen's Compensation check must go towards 

12 paying someone to help me. And I have been told by my 

13 doctors that there's nothing more than can be done for 

14 me, and that's why they put me on the palliative care 

15 program. And I -- I'm in Ohio and many of the doctors 

16 really do not even know how to treat us here. And I 

17 just ask Dr. Howard if you would be so kind, please, to 

18 take into consideration us who are home-bound and are 

19 very sick, that maybe we could get some kind of -- more 

20 discounted care we could afford 'cause we have to pay 

21 out of pocket to get help. And I would hope that --

22 there's many other people, I'm sure, in my position 

23 also. And I would like to say thank you to you for all 

24 you've done for (unintelligible). God bless everyone.

25 Thank you.
152

1 MR. ELLIOTT: Thank you, Steven, for those comments, and 

2 I believe, if I can, I'd like to just quickly summarize 

3 because you come across -- rather difficult for us to 

4 hear, but being a home-bound individual, you're seeking 

5 Dr. Howard's support for additional medical support in 

6 home health care. Is that correct?

7 THE OPERATOR: I'm sorry, I just cleared his line. If 

8 you'll press Star-1 again I'll reopen his line.

9 MR. ELLIOTT: Okay. Well, we'll go ahead and go to the 

10 next individual on line.

11 THE OPERATOR: I have Steven's line reopened.

12 MR. PETROVICH: Hello?

13 MR. ELLIOTT: Hello, Steven.

14 MR. PETROVICH: Yes, I was just saying that I have to 

15 pay out of pocket because I'm just on Social Security 

16 and they don't pay or send someone to the house, so I 

17 have to pay someone to come and help me in the mornings 

18 to get up and to help me with my meals and medicine, so 

19 I was just asking if there could be some type of 

20 provision for those of us who are --

21 MR. ELLIOTT: Thank you. We understand that now. I 

22 appreciate you coming back on line to clarify for us. 

23 Thank you.

24 MR. PETROVICH: Thank you.

25 MR. ELLIOTT: Next individual on line, Operator?
153

1 THE OPERATOR: At this time I show no further questions. 

2 Once again, if they would like to ask a question or make 

3 a comment, please press Star-1 on your touchtone 

4 telephone.

5 (Pause)

6 MR. ELLIOTT: Is there anyone else in the room here that 

7 would like to make comment at this time?

8 UNIDENTIFIED: (Inaudible)

9 MR. ELLIOTT: Well, you need to come up to the mic, if 

10 you please, because we like to have it on the -- on the 

11 transcript, Susan. Thank you.

12 MS. SIDEL: This last guy that just called, I thought 

13 that he should be getting 100 percent coverage for World 

14 Trade Center-related illnesses. He shouldn't be paying 

15 for it with Social Security. And I thought that like 

16 once you're screened -- see, this is where there's a 

17 huge problem with the way that -- you know, every time 

18 you're -- you are -- like your doctor says that this is 

19 World Trade Center-related, then you have to go to 

20 Worker's Comp court and fight to prove that. And that 

21 was something that wasn't supposed to be happening, but 

22 it is in fact happening. And so this poor guy -- I 

23 would have thought that his medications would not be 

24 paid by Social Security. They'd be paid out of -- he'd 

25 be in like the -- the volunteer fund, like I am, and 
154

1 then they'd be paid for 100 percent. The fact that he's 

2 in Ohio, that puts him in the Tommy Thompson program 

3 that is -- I've not heard good things about. And you 

4 know, that's a problem, because I -- I think this was 

5 like a really drastic case of somebody who desperately 

6 needs, you know, home care help. And the fact that he's 

7 paying out of pocket and doesn't even know that his 

8 medications should be paid for 100 percent, and he 

9 should be having home care paid for, you know, but 

10 that's the disconnect here.

11 Thanks.

12 MR. ELLIOTT: Thank you, Susan. Now back to the on--

13 on-line folks, is there anyone else that would like to 

14 make a comment by telephone?

15 THE OPERATOR: We do have a person; Denise Villamia, 

16 your line is open.

17 MS. VILLAMIA: Yes, good afternoon, Dr. Howard and 

18 everyone else there. I'm so sorry, I'm just very 

19 emotional after hearing the last caller, so I'm going to 

20 try to get myself together to get through what I have to 

21 say.

22 I want to thank Steven first for his service, and I'm 

23 very sorry that you're going through what you're going 

24 through, and my heart goes out to you and my prayers 

25 will, too.
155

1 My name is Denise Villamia. I'm in Florida right now so 

2 I can't be there personally, but my sister Rhonda spoke 

3 earlier. We were both volunteers down at the World 

4 Trade Center at Ground Zero. We were citizens who 

5 responded to the attack on the World Trade Center. I 

6 volunteered through the Red Cross and then the Salvation 

7 Army.

8 Prior to my setting foot at Ground Zero I was a vibrant, 

9 healthy, happy and joyful individual. I'm a social 

10 worker by profession within the New York City public 

11 school system, and currently I'm on an unpaid leave of 

12 absence due to my worsening medical conditions. I've 

13 traveled several times with the FealGood Foundation to 

14 Washington also in order to advocate for the passage of 

15 this bill. Subsequent to my stepping foot at Ground 

16 Zero I have developed, in this order, vitiligo, which is 

17 a disease of the skin pigmentation; asthma and reactive 

18 airway disease; post-traumatic stress, depression and 

19 generalized anxiety disorder; GERD and IBS; moderate 

20 obstructive sleep apnea; fibromyalgia; autoimmune 

21 antiphospholipid antibody syndrome, which is a blood 

22 disorder; lupus and Hashimoto's Disease, along with 

23 chronic fatigue syndrome.

24 In the research that I've reviewed for myself as a lay 

25 person, not a doctor, I have seen that for certain 
156

1 vitiligo and fibromyalgia can be triggered by exposures 

2 to traumatic events and/or exposures to chemical toxins. 

3 I have also read in research that vitiligo, 

4 fibromyalgia, lupus, chronic fatigue syndrome and 

5 antiphospholipid syndrome along with Hashimoto's Disease 

6 all have in common that they are disorders in which the 

7 immune system is attacking its own body, or the person's 

8 own body.

9 I have been involved at Mount Sinai program since 2003, 

10 and it's only recently that they've offered me treatment 

11 for the GERD, the sleep apnea and the asthma, and only 

12 because I had to strongly advocate for this and jump up 

13 and down to be heard. And right now I'm about to lose 

14 my health insurance because of the leave of absence and 

15 not being paid, and I eventually will have to quit my 

16 job. While I'm so grateful for these programs at Mount 

17 Sinai and what I am getting, it isn't good enough. It's 

18 -- it's not enough just to cover -- cover the covered 

19 treatments or the covered conditions or the identified 

20 conditions. Any and all immune system and inflammatory 

21 conditions should also be evaluated further, and treated 

22 through the program and under the new funds.

23 I went to Ground Zero with no thought of the after24 effects. I should not have to go outside the treatment 

25 program to be seen by a rheumatologist, a hematologist, 
157

1 an endocrinologist on a regular basis. These specialty 

2 doctors should be part of the covered treatment 

3 specialists that all participants can have access to.

4 I just want to say that the person that I was before 

5 9/11 no longer exists. I have had to learn to live with 

6 this new chronically ill person that I've become, and I 

7 just want to be able to enjoy my life again as best I 

8 can. Please, Dr. Howard, I beg of you to help me and 

9 the participants do this, all responders. Please help 

10 all of us and treat us for all our symptoms.

11 Thank you.

12 MR. ELLIOTT: Thank you for those comments, Denise. Are 

13 there any more people on the line that would like to 

14 give comment?

15 THE OPERATOR: Once again, to make a comment, please 

16 press Star-1 on your touchtone phone.

17 (Pause)

18 At this time there are no commenters on the phone.

19 MR. ELLIOTT: Anyone else in the room that would like to 

20 provide comment today?

21 If not, we're going to wait around for 15, 20 minutes, 

22 and if you want to come up and talk to Dr. Howard or 

23 myself or some of the program representatives, that 

24 might be a good thing to do at this time, so -- one last 

25 call for any comments in the room or on the line.
158

1 THE OPERATOR: Once again, that is Star-1 on your

2 touchtone phone.

3 (Pause)

4 MR. ELLIOTT: All right, we'll check back with the folks 

5 -- with the operator on line in about five to ten 

6 minutes to see if anybody else has dialed in and wants 

7 to comment, and we'll wait around here in the room and 

8 if anybody wants to comment, please come up and ask and 

9 we'll put you on the mic. Thank you.

10 (Pause)

11 MR. ELLIOTT: Any phone comments or in the room 

12 comments, for the record? We'll stay around after this, 

13 but we're going to close down the phone line and the 

14 transcription here in a moment if we don't have any 

15 further commenters.

16 THE OPERATOR: Once again, that is Star-1 on your 

17 touchtone phone.

18 (Pause)

19 MR. ELLIOTT: Okay, if we have a person on line that 

20 likes to comment, let's please hear those comments. Do 

21 we have one more person on line that wanted to comment?

22 THE OPERATOR: No, sir, no more.

23 MR. ELLIOTT: No? Okay, we have one individual in the 

24 room coming forward to make comment.

25 Please state your name for the record, if you please.
159

1 MS. ZUNIGA: Hi, my name is Marina Zuniga. I used to 

2 work in the 9/11 for six months all around and we don't 

3 has protection when we're going to clean because 

4 everybody say that nothing happen, everything was okay. 

5 And I know a lot of people work with me, about 300, with 

6 my group, and everybody's very sick. I used to have 

7 cancer before. I have asthma, reflux, my eyes, pain in 

8 my bones, and I don't need the -- they say that we are -

9 - has to treat me yes only for five years more, and I 

10 don't think so that is good for everybody because 

11 everybody's very, very sick. Some people that I know, 

12 they die by cancer. They are very sick. They can't 

13 come today because they are very bad condition, and I 

14 would like to tell to somebody help us, because we need 

15 help. Believe me, we don't have tomorrow, we don't 

16 know. Everybody's difference -- different kind of 

17 sickness, every day different, everybody's different and 

18 sick. And I went to the Bellevue Hospital. I went to 

19 the treatment. They gave me lot of pills. They gave me 

20 lot of medicine, but is not enough. I don't feel good. 

21 Every day I feel very, very bad, mental problems, and I 

22 don't know what can I -- I guess I -- each day I say 

23 thanks God for the (unintelligible) that they gave me 

24 because I'm not feel good. And it's a lot of people is 

25 like the same like me. They can't come to over here. 
160

1 They -- someone is outside because they have -- scared 

2 to come and sit in here because they don't have papers 

3 and I'm feel very sad for them.

4 Thank you.

5 MR. ELLIOTT: Thank you, Marina, for those comments. I 

6 appreciate you coming up at the last hour here.

7 Any further comments from those in the room?

8 (No responses)

9 We're going to wait another five minutes. We'll see.

10 (Pause)

11 MR. ELLIOTT: I believe we have one more caller on line 

12 who'd like to comment, so if we could hear that caller 

13 now -- and if there's anyone else in the room that would 

14 like to identify themselves as wishing to give a 

15 comment, please do so.

16 Operator, if we could have the caller on line.

17 UNIDENTIFIED: I'm here, are you -- can you hear me? 

18 Hello?

19 MR. ELLIOTT: Yes, we can hear you.

20 UNIDENTIFIED: Then -- well, I'm -- I'm hoping that 

21 maybe by my calling I'll open up some more discussion 

22 because I'm one of the shyer people and the most -- I'm 

23 feeling the most intimidated about calling 'cause I -- I 

24 hear about all these people that are really, really --

25 and are right on the edge of -- have just gone through 
161

1 so much and --

2 MR. ELLIOTT: Could you speak up a little bit more and 

3 give your name, if you please? I'm sorry to interrupt 

4 you, but we're having a little bit of trouble hearing 

5 you so if you could be a little bit more -- louder and -

6 -

7 UNIDENTIFIED: Should I start over --

8 MR. ELLIOTT: -- tell us your name.

9 UNIDENTIFIED: -- or should I just go on? I just -- I 

10 wanted to say that I'm one of the shyer people and 

11 feeling one of the -- I am one of the ones who feels the 

12 most insignificant because I haven't -- my experience, 

13 although horrifying for me, 9/11, has just been as bad 

14 throughout the whole last ten years. And I'm -- from 

15 that moment that it happened until now, I feel so 

16 insignificant and so small that why should I bother you 

17 with what my problems are. But nonetheless, I'm going 

18 to go ahead. It's taken me all this time to have the 

19 nerve to call because I don't feel like I'm one of the 

20 forgotten ones, and I know there's lots of people out 

21 there that are because I know there are these incredibly 

22 substantiated first responders and people that are 

23 horribly sick, and that makes me feel like I shouldn't 

24 even bother, but I am going to bother.

25 I live on Ground Zero and that day 18 windows of mine 
162

1 blew out. I had six feet of rubble in my loft, and I --

2 I and my son and my partner, who's no longer here, spent 

3 the year and a half -- it took 18 months to come home 

4 after that day, digging in here, trying to find things. 

5 And as it turned out, it all got put in storage and then 

6 I couldn't afford the storage bill.

7 My situation is ten years later things are falling apart 

8 physically. I've been pretty sick. I'm homebound. I 

9 couldn't come today. I'm so glad you had some kind of 

10 call-- listening service available. But I think it's 

11 very important for people like me, who I don't have the 

12 energy to fight anymore -- I tried and, you know, just 

13 tried to stand up for myself and I just got rolled over, 

14 run over pretty much by the systems and the process. It 

15 was really nobody's fault. It's the process just got so 

16 hard.

17 Just trying to find a therapist, you know, they -- you 

18 had to go -- Red Cross said you had -- can go to a 

19 therapist, but you've got to go find someone who will 

20 take you on and be willing to wait the nine months it 

21 took to get paid. So my life has been like that. I 

22 have no money. I'm on disability. I'm getting food 

23 stamps and meals on wheels -- thank God there's those 

24 services. But I -- I had a thriving business here in my 

25 loft. My windows are on Liberty Street. I'm above a 
163

1 fire station. And there's no hel-- I go -- everywhere 

2 I've asked for help, they always say "Well, do you have 

3 a disease?" Yeah, I've got lots of things wrong with 

4 me, including I sleep about 20 minutes a night, but 

5 nothing -- you know, I'm not dying of cancer and I don't 

6 ha-- I have a lot of things that are probably not going 

7 to make me live that much longer, but I -- I have spent 

8 months and months in hospitals for different things, but 

9 none of it is substantiated. I even went to the lawyers 

10 and -- about the -- the bill, and none of it is like, 

11 you know, directly substantiated by what I went through 

12 9/11. And I -- I just want to put a voice in for those 

13 of us that haven't made a voice very loud and very 

14 clear, and I don't want to take any more time, but I 

15 think it's really important that somehow those of us who 

16 are more of the silent ones have some -- get some help. 

17 If nothing else, someone to listen to us because that's 

18 the biggest problem, just getting someone to hear us.

19 Anyway, I thank you for doing what you've done, and I 

20 hope it serves a lot of people. I'm sure it will. It 

21 would be nice if something was possible for me because I 

22 know there has been much -- I mean I have no money now 

23 so even my disability check goes to paying part of my 

24 rent, so -- and I can't go to doctors a lot of times. 

25 I'm on Medicaid and Medicare, so I do have that now, but 
164

1 that just came, so I haven't had that -- you know, I had 

2 to wait till I -- quite a while, after 65, for that to 

3 come. So I'm -- I'm -- you know, I'm an elder disabled 

4 person who needs help.

5 And I'll thank you for the help you've given and I'll 

6 say good-bye. Thank you.

7 MR. ELLIOTT: Thank -- thank you for that comment. We 

8 have one more comment here from somebody in the room, 

9 Sta--

10 DR. HOWARD: Stan, be -- go ahead up there. I just was 

11 going to deliver some information about the victim's 

12 compensation fund for our record so that, if you're 

13 interested, I have a phone number and a web site, which 

14 I just checked. It's 9/11 -- that's 9-1-1, just enter 

15 the numbers 911 dot fund, f-u-n-d, at usdoj dot gov. 

16 That's 911.fund@usdoj.gov. And I have a phone number, 

17 too; 202-616-7900. That's 202-616-7900. We'll put that 

18 on our WTC web site on the NIOSH site and our -- our 

19 docket will list that number and web site. So thanks, 

20 Stan. Sorry for the interruption.

21 MR. MARK: That's okay. My name is Stanley Mark. I'm 

22 an attorney with the Asian-American Legal Defense and 

23 Education Fund. I am one of the cofounders of the 

24 Beyond Ground Zero Network that helped initiate and set 

25 up, in partnership with Bellevue Hospital, a clinic that 
165

1 would treat and track survivors, mainly folks from lower 

2 Manhattan, and including Chinatown and lower east side.

3 I'm interested in today in just giving a very brief 

4 statement indicating our support for combining the 

5 clinical centers with the data centers that are 

6 mentioned in the Zadroga Act. We feel that is very 

7 critical to do so in order to further studies of people, 

8 particularly folks living in the lower east side and 

9 Chinatown, that may or may not have included in other 

10 studies. However, we will be submitting, at some point 

11 later on before the April deadline, comments, either as 

12 a individual organization or as part of Beyond Ground 

13 Zero Network or part of the community advisory 

14 committee.

15 Thank you.

16 MR. ELLIOTT: Thank you, Stan. Anyone else who would 

17 like to provide comment today, for the record?

18 (No responses)

19 We encourage you to provide your written comments to the 

20 NIOSH docket. Those will be considered and factored 

21 into our deliberations, so please use that avenue of 

22 communication as well.

23 Anyone else who would like to speak today?

24 (No responses)

25 Anyone on the phone?
166

1 THE OPERATOR: Once again, on the phone it is Star-1 on 

2 your touchtone phone.

3 (No responses)

4 At this time there is no one on the phone.

5 MR. ELLIOTT: Thank you, Operator. Do you have any 

6 concluding remarks?

7 DR. HOWARD: Well, I think -- I think we've either 

8 exhausted you or exhausted us, or maybe both. I want to 

9 thank everybody who -- who participated today. I 

10 counted 43 myself, and that really is -- is great. And 

11 I want to especially thank those that -- that thought 

12 about -- read the statute, thought about it and -- and 

13 found all the difficult areas, and thank you very much 

14 for contributing. I learned a lot and I think everyone 

15 from NIOSH that was here today learned a lot. And 

16 certainly we have a lot of work to do and we'll be --

17 we'll be interested in involving all of you as we go 

18 forward.

19 So hopefully this won't be the last of our meetings, and 

20 we hope to have others. And thank you very much for 

21 taking time out for everyone who came to help us 

22 implement this.

23 So safe travels getting home, and thank you again. And 

24 thank you, Larry.

25 (Meeting concluded at 2:25 p.m.)

26
167

1 C E R T I F I C A T E

2 STATE OF GEORGIA

3 COUNTY OF FULTON

4

5 I, STEVEN RAY GREEN, being a Certified Merit Court 

6 Reporter in and for the State of Georgia at large, hereby 

7 certify that the foregoing pages, 1 through 166, 

8 constitute, to the best of my ability, a complete and 

9 accurate transcription of the proceedings and were 

10 accurately reported and transcribed by me or under my 

11 direction.

12 I further certify that I am neither related to or 

13 counsel to the parties herein nor have any interest in the 

14 outcome of the above-styled proceedings.

15 This certification is expressly denied upon the 

16 disassembly and/or photocopying of the foregoing 

17 transcript, or any portion thereof, unless such

18 disassembly/photocopying is done by the undersigned and 

19 original signature and official seal are attached thereon.

20 Witness my hand and official seal this 16th day of 

21 March, 2011, in Atlanta, Fulton County, Georgia.

22 

23 _____________________________

24 STEVEN RAY GREEN, CCR, CVR-CM

25 CERTIFICATE NUMBER A-2102