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 purp oseful 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 transcri bed 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 "uh

uh" 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 3 PROCEEDINGS

(10:15 a.m.) 1

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

is holding this meeting to hear about your concerns and 3
issues with regard to the new James Zadroga 9/11 Health 4

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

request of several members of the New York State 6

Delegation in the U.S. House of Representa tives

-- 7

Representative Carolyn Maloney, Jerrold Nadler and Peter 8

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

today because there are important votes in the House 10

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

listening to your input. 12

So as you know, the

-- the 9/11 Act was signed by the 13

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

within the Department of Health and Human Services the 15

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

probably know, amends the September 11 Victim 17

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

Department of Justice. 19

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

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

written word is always available to you, and we 22

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

enter the word "docket" and you can enter as much of the 244 4 written word as you want. And we encourage you to do 1

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

April 29th, and can be extended, so

-- so please ava il 3

yourself of that if you

-- if you don't want to speak 4

today or

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

Transcripts from the

-- from the meeting will be 6

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

important for me to make a little bit of a discla imer 8

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

-- 9

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

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

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

personal medical information, that in formation is very 13

difficult to redact, and so I encourage you not to

-- 14

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

see in public. So keep that in mind. 16

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

please avail yourself of the electron ic docket as

-- as 18

we go through the next few months and your thoughts 19

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

comment on. 21

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

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

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

process of understanding the bill and making plans for 255 5 implementation, so this is an opportune time to hear 1

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

anyone's interested in the current programs, 3

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

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

will keep us all on time, our five

- minute limit, Larry 6

Elliott from NIOSH, who works in our Cincinnati 7

facility. And Larry will explain more about the fire 8

exits and our schedule for today. 9

Larry? 10

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

ladies and gentlemen. We certainly appreciate your 12

presence here today, and your participation. Thank you 13

for coming. We had prepared this meeting wi th the 14

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

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

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

we would

-- in order to allow everyone an ample 18

opportunity to have their voice h eard, we would limit to 19

five minutes. 20

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

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

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

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

we're going to have 70 speakers at this point in time 256 6 this morning, so if we go through the complete roster of 1

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

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

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

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

going to keep the five

- minute clock going on you. 6

Some housekeeping issues

-- safety. We know that 7

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

in the event of an emergency the loudspeaker will come 9

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

Fire Warden will tell us over the loudspeaker to exit 11

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

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

The restr ooms, they are located

-- if you go back out 14

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

restrooms. There are also a couple of small restrooms 16

over on the side of this room

-- on that side over there 17

(indicating). 18

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

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

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

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

in a moment. 23

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

U NIDENTIFIED: (Inaudible) 257 7 MR. ELLIOTT: Microphone's not working? Thank you. So 1

we'll

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

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

can get a clear recording. 4

So I'm going to call the first

-- this one works. I'm 5

going to call the first three names off so

-- you may 6

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

first, then Rhonda

-- and I'm

-- I apologize if I mis

-- 8

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

to try to get it r ight

-- and Jennifer Spano. Those are 10

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

Ryder, please. 12

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

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

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

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

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

MR. ELLIOTT: Readjust your

-- 18

MR. RYDER: Testing one, two

-- can everybody hear me in 19

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

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

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

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

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

the clock have a pause? 258 8 Thank you. I'd like to take a moment o f your time, 1

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

describe us to you in a moment. 3

It is my understanding after a brief conversation with 4

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

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

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

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

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

them, we'd also. 10

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

introduce th e FealGood Foundation Zadroga Bill Action 12

Team, known fondly as the Zad Team

-- if you can stand 13

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

you in red. We've spent

-- our team has

-- has 15

responded down to Washington, DC to pursue the passing 16

of the Zadroga Bill at least 100 times

-- or close to 17

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

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

we've been to DC. 20

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

the Russell, the Cain e* and all the other buildings very 22

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

you that the FealGood Foundation will begin to know this 24

building very well, as well. We are determined. We are 259 9 pursuant (sic). We are vigilant and we don't waver

. 1

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

first responders like myself, as well as the families 3

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

and the employees that had to pursue (sic) from there on 5
9/11. Thank you, gentlemen. 6

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

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

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

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

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

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

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

I would like to be here for them as long as I can, not 14
having realized that when they were born. 9/11 changed 15

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

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

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

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

like we made a difference in DC. 20

There are many concerns that we have about Ground Zero 21

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

toxins floating around that none of us could identify. 23

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

down there was safe. We all know that not only was that 2510 10 a fall acy then, it is a gross statement now. There is 1

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

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

down there with those buildings, and because those 4

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

can just use your imagination with things like asbestos, 6

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

buildings' cement and other things, these toxins were 8

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

they got there. 10

Our con cern as the Zadroga Action Team is there is a 11

list of cancers that were

-- I apologize, somebody moved 12

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

affected

-- or people were affected by these cancers

-- 14

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

(Pause) 16

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

may. I apologize for that. 18

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

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

aware that people are suffering with that type of cancer 21

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

tell you about those types of cancers

-- as we know 23

them, and we're not doctors. 24

Skin cancer, lung cancer, lymphoma, liver cancer, colon 2511 11 cancer, thyroid cancer, testicular cancer, leukemia, 1

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

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

tongue, rectal, esophageal, myeloma, pancreatic, 4

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

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

esophagus, digestive, gastrointestinal, muscular, anal, 7

ovarian, mesothelioma, parotid, small intestine, 8

skeletal, parathyroid, penile, pituitary, urethral, 9

bladder, genitorany

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

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

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

a doctor. 13

Our concerns about these cancers, ladies and gentlemen, 14

is they attack

-- when the Twin Towers were attacked and 15

those buildings fell and those toxins became airborne, 16

those dea dly toxins were breathed in by myself and 17

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

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

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

But a good friend of mine, Tony

-- who's sitting in this 21

audience

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

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

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

advocates. I need you to fight for me because cancer is 2512 12 not covered." 1

Gentleme n, we need to expedite the coverage of cancer. 2

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

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

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

scratches his leg and three months later has g ot a sore 6

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

sore is still there today, there is a concern

-- there 8

is a genuine concern

-- of these types of cancers that 9

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

they did, and how is i t that they're affecting

-- or 11

they are affected by these cancers. 12

It is therefore not surprising that a record number of 13
cancers have been reported along the 9/11 community. 14

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

and they're telling pe ople that they can't breathe, 16

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

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

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

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

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

full well, gentlemen, that these people stood down 22

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

should be covered. 24

The addition of cancer to this list needs to be tracked. 2513 13 We use

-- need to use t echnology that is afforded to us 1

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

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

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

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

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

usual. Thank you. 7

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

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

Next we have Rhonda. 10

(Pause) 11

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

For nine months I volunteered at the World Trade Center 13

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

Chapel. Aside from providing care to the responders and 15

workers who came into our respite centers for meals, 16

rest, supplies, showers, or simply to vent, I did 17
perimeter runs around the pile/pit in ATVs, bringing 18

supplies and nourishment to those who could not leave 19

their posts. I also served at the respite tents right 20
beside the pile/pit. Of the 26 World Trade Center 21

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

addition to these 12 I have thyroid disorders. 23

I have been a simultaneous

-- I have been a simultaneous 24

focus group interpreter for Hispanic marketing research 2514 14 since 1982. As my physical and psychological health has 1

increasingly deteriorated, I have had to incrementally 2

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

work. 4

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

Washington with the FealGood Foundation to help put a 6

face to the staggering statistics in order to hav e our 7

leaders understand the importance of the Zadroga Bill. 8

I have been advocating for the health care needs of the 9
9/11 community over the past three years, initiating 10

dialogues with the directors of the World Trade Center 11

Monitoring and Treatment Progr ams, and serving on the 12

World Trade Center Registry Community Advisory Board. I 13

come before you now not only as an individual with 14

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

issues we are raising here today in an effort to 16

communicate priorities f or the implementation of this 17

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

Action Team. 19

We urge NIOSH to ensure that there is an agreed

- upon, 20

consistent quality of medical care provided to all 21

participants in the World Trade Center health progr am. 22

We are particularly concerned with the following: 23

All data centers should operate in a fully transparent 24

manner, using standard protocols to capture data on 2515 15 patient medical history. In order for medical 1

understanding of World Trade Center illnesses to keep 2

pace with the emergence of new health effects, 3

comprehensive health data must be kept for each 4

participant. This includes intake, monitoring and 5

treatment visit data, as well as data from non

- World 6

Trade Center doctor visits. Medical monitoring e xam 7

data and treatment doctor data should include 8

information on all symptoms and diagnosed conditions, 9

whether or not they are deemed to be World Trade Center

10

related. 11

Data from mail home questionnaires and monitoring visit 12

interviews should be immediate ly printed out so that the 13

patient can confirm the data has been captured 14

accurately. Ideally, errors caught on the first review 15

should be corrected on the spot. There should be a two

16

week period for participants to review the document for 17

any additional errors, which would be corrected prior to 18

the document being entered into the official record. 19

Doctors' evaluation findings should be done 20

electronically, not handwritten, and provided to the 21

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

conditio ns the patient may be experiencing on the day of 23

the appointment should be noted in the record. 24

Neglecting to do this could not only skew the patient's 2516 16 results

-- for example, giving a false positive

-- but 1

it could also skew the data used for the researc h at 2

large. 3

Psychological evaluations should be done early in the 4

appointment so that disturbing emotional feelings that 5

may be triggered can be addressed while the patient is 6

still at the medical center. 7
Due to the 9/11 community's unique exposure to th e 8

unprecedented toxic brew, the mandate

-- and the mandate 9

of this research and monitoring program, patients should 10

be given blood tests that are more sophisticated in 11

evaluating toxins, inflammatory and autoimmune 12

conditions. Blood and urine tests should include 13

screenings for cancers, where such tests exist. 14

Patients should be able to choose their treatment 15

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

doctors. Patient records within the monitoring and 17

treatment program should be cross

- refer enced when the 18

doctor's evaluating the patients' conditions. Currently 19

in the treatment program, patients' non

- World Trade 20

Center

- related conditions are recorded, but they are not 21

analyzed or included in the research, nor are they 22

referenced in the monito ring doctor's report. 23

Doctors and staff must have a comprehensive 24

understanding of the documentation necessary to qualify 2517 17 participants for disability claims, or any other benefit 1

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

provide these docume nts in a timely manner. 3

Thank you for treating us with dignity and respect. 4

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

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

Perezant

-- Prezant. 7

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

Ground Zero for approximately nine months with the 9

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

employee. I was a shift supervisor for the respite 11

center that serviced all Ground Zero workers, and that 12

was one of the community's hubs duri ng the rescue, 13

recovery and cleanup operations at the World Trade 14

Center site. 15

(Pause) 16

Should I start over, Dr. Howard? 17

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

MS. SPANO: How is this? 19

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

MS. SPANO: H ello. I am Jennifer Spano. I worked at 21

Ground Zero for approximately nine months for the 22

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

employee. I was a shift supervisor for the respite 24

center that serviced all Ground Zero workers and that 2518 18 was one of the community's hubs during the rescue, 1

recovery and cleanup operations at the World Trade 2

Center site. 3

Post

- Ground Zero I volunteered with several 4

organizations, including family groups and groups of 5

former Ground Zero volunteers. Immediately follow ing 6

the closing of the site we stayed together as a 7

community, and we have remained together as one 8

community until this day. I have since been introduced 9
to and equally bonded with other members of the 9/11 10

community, such as survivor groups. 11

After fina lly acknowledging and seeking help for my 12

PTSD, I gathered myself together enough to enter a 13

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

receiving my graduate degree. While living in 15

Washington I would join the FealGood Foundation whenever 16

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

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

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

Washington to walk the halls of Congress, advocating for 20

our bill. 21

I stand before you today t o relate our community's 22

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

read some of the concerns listed in the Zadroga Action 24

Team's document. 2519 19 We urge NIOSH to ensure that there is an agreed

- upon, 1

consistent quality of medical care and treatmen t 2

provided to all participants in the WTC health program. 3

We are particularly concerned with, one, participant 4

accommodation. Although the literature states that the 5

exam takes three hours, this does not accord with 6

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

all

- day event. People cannot necessarily return to 8

work, as they have promised their employer. Please 9

communicate clearly the accurate duration of the exam. 10

There should be late

- night and Saturday appointments at 11

least once a month in order to accommodate those for 12

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

should be ample staffing so that optimum service can be 14

provided. We expect something more than a bare

- bones 15

program. We ask that enough resources be provided to 16

fund a first class program. 17

Two, tracking conditions. Each data center must 18

maintain a centralized database with all monitoring data 19

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

participant's condition is deemed to be WTC

- related and 21

whether or not th e diagnosing doctor is a WTC health 22

program clinician. From this data, data centers must 23

produce periodic reports on illness incidence and 24

prevalence for conditions emerging among the 2520 20 participants. Participants need to know which 1

conditions are manifesti ng in significant numbers within 2

the community. Updated incidence and prevalence data 3

for cancers and other serious conditions diagnosed in 4

the population should also be presented in graph form, 5

and shared with participants

-- whether upon request, 6

when t hey come in for appointments, or in the 7

newsletter. 8

Three, scientific analysis. If the Centers of 9

Excellence will only evaluate and record those symptoms 10

and diagnosed conditions on the covered list, their data 11

will be flawed and inadequate. This does n ot meet the 12

standard of scientific rigor. Further, this flawed data 13

will produce flawed scientific research and undermine 14

the effort to identify new conditions as WTC

- related. 15

This does not serve the needs of our community. 16

Four, the difference between programs. The survivor 17

program is very different from the responder program. A 18

survivor community participant is required to have a 19

WTC

- identified symptom in order to be enrolled in the 20

treatment program. Then they get yearly revisits for 21

monitoring. O n the other hand, responders are monitored 22

and then accordingly sent for treatment. We want the 23

survivor community to be monitored in the same way that 24

the responder community is. We want one list of 2521 21 conditions for the whole 9/11 community. Right now th e 1

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

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

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

survivor conditions can be added of their own accord, 5

with responders following. 6

Five, exclusion barriers. In the certification of 7

residents, students and area workers who are sick from 8

being exposed to WTC dust and smoke in the geographical 9

area between Houston Street and 14th Street, the 10

treating physicians should have the discretion. T he 11

process for certifying prospective participants must not 12

create a barrier to care. 13

Six, covered conditions. We implore you to consider 14

PTSD as an illness that stands on its own. 15

Thank you for listening. 16

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

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

then Rich Volpe. 19

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

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

Good morning. I am Catherine McVey Hughes, the vice

22

chairperson of Com munity Board One. On behalf of 23

Community Board One I'd like to thank Representatives 24

Maloney, Nadler and King, the primary sponsors of the 2522 22 James Zadroga 9/11 Health and Compensation Act of 2010, 1

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

rec eive comments on implementing the provisions of the 3

Act. 4

In addition we would like to thank NIOSH for its prior 5
support of the 9/11 health issues for both the responder 6

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

The World Trade Center lies in the heart of Manhattan 8

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

the towers were attacked are still living and working 10

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

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

in the after math of September 11, 2001 terrorist 13

attacks. 14

CB

- 1 has strongly supported the James Zadroga Health and 15

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

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

federal legislative session at the end of 201 0. Today 18

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

will be implemented, including the World Trade Center 20

medical moni

-- World Trade Center program administrator 21

who will be appointed, and the other issues regarding 22

medical monitoring and tre atment for survivors, 23

education, outreach, clinical data collection and 24

analysis, research on health conditions, and expansion 2523 23 of the diseases and conditions covered. 1
Under the 9/11 Health and Compensation Act, a World 2

Trade Center medical program adminis trator will be 3

appointed to run the World Trade Center health program 4

to be established within the Department of Health and 5

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

the appointment of Dr. John Howard would ensure 7

continuity of leadership and the implementation of the 8

legislation. Dr. Howard is currently the director of 9

NIOSH and coordinator of the World Trade Center health 10

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

carefully listened to the concerns of the diverse 12

coalition memb ers of the survivor community. In the 13

short term, an important part of the medical monitoring 14

and treatment of survivors is the continuity of funding 15

of the World Trade Center health centers while the 16

legislation is being implemented. Continuity is 17

impor tant to the well

- being of the patients and the need 18

to retain specially trained, dedicated doctors and 19

staff, especially funding for the pediatric program, 20

including keeping a pediatrician, a pulmonologist, a 21

child psychologist and development doctor. It is 22

important to continue the healthy dialogue that the 23

World Trade Center EHC Community Advisory Committee has 24

had with NIOSH for several years. The education and 2524 24 outreach component of the World Trade Center EHC for the 1

survivor community will be a critic al component of the 2

delivery of health care for the next five years. 3

Although the legislation does not go into effect until 4

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

more effective if some funding were available prior to 6

the upcoming 10

- year anniversary of the terrorist 7

attacks. Only now are some members of the survivor 8

community beginning to understand the correlation 9

between their exposure to World Trade Center 10

contamination and its health impacts. Community

- based 11

education and outreach i s a key to success, especially 12

to diverse community that is somewhat cynical after all 13

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

years. I want you

-- to point out, this is the EPA 15

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

through the sh ades there. 17

We request that there is a special emphasis on outreach 18

to children that have become adolescents or young 19

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

were living or attending school in lower Manhattan in 21

close proximity to the World T rade Center, but they 22

comprise only a very small portion of the World Trade 23

Center health registry besides the World Trade Center 24

health registry findings that there's not as much 2525 25 research as we'd like about the impact of 9/11 on 1

children, a particularly v ulnerable population. The 2

limited studies that have been performed, such as those 3

cited by the New York World Trade Center Medical Working 4
Group, 2010 annual report on 9/11 health, suggest that 5

elementary school children could be more at risk of 6

respirato ry illnesses. 7

We are also concerned about the conditions that may 8

affect survivors more because of gender

-- we're worried 9

about gender and age may not adequately represent the 10

responder population that has been studied. Therefore 11

we urge the science adv isory committee to take steps to 12

address the unique needs of children as adolescents and 13

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

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

downtown in the aftermath of September 11th attacks. 16

Ther e's no monitoring program for survivors and women in 17

the World Trade Center health registry. It was 18

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

in the area of the World Trade Center disaster. 20

Therefore any disease that is included for respon ders 21

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

collection analysis portion of the survivor program will 23

be implemented is also important. 24

The diseases and conditions covered in the recent 2526 26 legislation need to be expanded. At this time the 9/ 11 1

Health and Compensation Act does not include cancer in 2

the list of World Trade Center

- related health conditions 3

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

approved diseases needs to be expedited, especially 5

those cancers that are strongly correlated to 6

environmental exposure through the inhalation, ingestion 7

and other exposure to carcinogens. 8

We are concerned with the long lag time between disease 9

diagnosis, data collection, research and approval. For 10

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

Department of Health cancer registry web site is from 12

2007. A three

- year delay in information relating to 13

cancer is not acceptable since such a gap in medical 14

knowledge could be the difference between life and 15

death. 16

Thank you very much. 17

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

David. 19

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

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

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

audience, and nice

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

as well. 24
When 9/11 occurred we realized here in New York City 2527 27 that we needed federal assistance, but that this 1

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

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

York C ity, firefighters, cops, community, et cetera. 4

We grouped together and we developed a local health care 5

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

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

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

Zadroga legislation. 9

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

bureaucracy will steal patient care dollars. This was 11

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

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

Zadroga Bill that cannot be increased, and therefore 14

every administrative dollar takes away from a patient 15

dollar. 16

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

that you can't have a program without excellent 18

administration oversight, and I a pplaud you

-- all 19

right?

-- for thinking about how to achieve that, 20

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

I am not. 22

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

achieve this

-- all right?

-- it will wind up becoming a 24

bloate d, expensive bureaucracy, a bureaucracy that 2528 28 spends a fortune on compliance and audits

-- all things 1

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

proper level rather than at an extreme level, stealing 3

patient care dollars. 4

Specifically, I am imme nsely concerned about the 5

administrative contract proposal that went out last week 6

with very little knowledge to any of the participants. 7

An administrative contract proposal that, 8

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

that, if interprete d the way it is written, it 10

specifically states that 290,000 contract hours per year 11

can be spent on administrative oversight issues. 12

Now that is a huge amount of money. If we were to just 13
do some simple multiplication at $100 an hour, that 14

would be $29 million per year. If we were to do it at 15
$50 an hour, that would be $15 million a year. And both 16

of those costs per year

-- all right?

-- exceed the 17

costs of every

-- of nearly every one of the clinical 18

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

e xceeds the cost of what is allocated for the data 20

centers in the current Zadroga Bill. 21

Now that makes no sense, so there's

-- needs to be some 22

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

that that contract proposal merely set up parameters and 24

t hat there's no intention to come anywhere near those 2529 29 hours. But I've never seen a contract proposal that 1

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

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

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

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

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

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

can dramatically change health care. 8

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

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

with federal assistance. For example, outreach, 11

retention, getting new patients, keeping patients

-- 12

that is a local response. T hat cannot be nationalized. 13

That cannot be outsou rced to some company that sits 14

somewhere. We have clear knowledge that when we call 15

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

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

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

examp le of how outreach and retention must be local. 19

We also have clear knowledge that even when we outsource 20

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

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

-- 22

pick up the phone. So there's a

-- there 's a certain 23

amount of distrust that needs to be understood in this 24

program. 2530 30 And the n finally, any concept of removing research from 1

the data centers needs to be eliminated. Research is 2

not a four

- letter word. Research is not guinea pigs and 3

experiments . Research is being able to answer the very 4

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

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

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

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

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

clinical centers, the data centers and the science are 10

married that every one of our patients is getting state 11

of the art care

-- all right?

-- and has a chance for 12

real, honest disease su rveillance. 13

I thank you. 14

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

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

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

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

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

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

lot of people here are saying. 21

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

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

escorts, working with th e Port Authority, all different 24

-- I was on every aspect of the location. 2531 31 My concern is there's a lot of people like myself that 1

are diagnosed with illnesses that are not being 2

recognized by whoever the people are doing these 3

studies. Prior to 9/11 I was a healthy

-- healthy 4

person. I went to the gym five to six times a week, 5
didn't spend much time with doctors. After 9/11, now 6

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

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

seeing ENT doc tors

-- I have all different ailments. My 9

main ailment is kidney disease, which is going to 10

eventually lead me into full kidney failure. My disease 11

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

going to be. 13

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

involved here to please look outside the box and realize 15

that there are a lot of different ailments out there 16

that we're not

-- that we're not recognizing. And 17

that's my only concern. 18

I appreciate your time. 19

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

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

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

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

working with the cement union, building high rises in 24

Manhattan. And the tw o points that I want to make about 2532 32 being in the construction business, I know every 1

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

heard anything about this. Everybody's saying that 3

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

government recognize s merc ury as a cancer
- causing agent. 5

You had 220 floors of fully

- lit merc

-- fluorescent light 6

bulbs in all those buildings. I mean

-- so that

-- it 7

just baffles me when the federal government can turn 8

around and say that mercury is cancer

- causing, you can 't 9

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

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

floors with full fluorescence like these (indicating)

-- 12

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

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

And the only other point I want to make relates 15

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

realm of these fakes, everybody that's latching onto the 17
9/11 Zadroga Bill. All of a sudden, everybody was down 18

there

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

they set up some kind of commission

-- I mean all this 20

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

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

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

know, a nd the frauds out of this money. 24

That's all I have to say. Thank you. 2533 33 MR. ELLIOTT: Thank you, T.J. Now we have Keith LeBow 1

and Mike

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

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

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

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

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

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

of my problem. My biggest problem, though, is the heal

8

- is the medical program i tself, Health Care for Heroes. 9

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

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

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

if it's 9/11

- related or not." They cut you loose. 13

They leave you to go

-- and go somewhere else. 14

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

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

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

health. I've been t old by doctors that I have very 18

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

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

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

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

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

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

constantly go to the doctors and have the doctors re

- 2534 34 diagnose the same thing that they were doing for the 1

Trade Center program. Th is puts me back severa l years. 2

This is not going to help me. 3

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

with him to help me. I

-- my prayer
-- my pleas fall on 5

deaf ears. I'm getting nowhere. I mean I

-- I'm now 6

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

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

me, to try to save my life. 9

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

know that both Bell e vue and Mount Sinai pick and choose 11

who they want to help. When you

-- like I said, when 12

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

up and use the statement "We can't figure out what's 14
wrong with you; we don't know if it's 9/11

- related." 15

And that's the end of your care. 16

Some

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

committee tha t will actually protect everybody involved 18

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

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

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

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

taken away from me. 23

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

the pile. If I knew then what I know now, I would have 2535 35 stood and let the buildings hit me because I can't take 1

much more of this. I

-- I wake up in the middle of the 2

ni ght, my bed full of blood. My nose

-- it's just 3

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

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

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

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

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

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

you." They're looking at the

-- they're looking at the 10

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

going through on the inside. 12

I

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

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

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

excruciating pain. 16

I had somebody rec

-- a doctor recently want to put me on 17

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

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

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

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

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

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

without this, people like me

-- you're going to see us 24

more and more and more in the papers. There's going to 2536 36 be more deaths, and they're not going to

-- they're not 1

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

just going to say "Well, hey"

-- I mean look at Cesar 3

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

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

Bell

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

yo u "Please help me, please" over and over again, and to 7

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

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

That's turning around and saying you won't

-- you won't 10

allow harm to come to another perso n, but then turn 11

around and stab them right in the back. 12

We need help now. Thank you. 13

MR. ELLIOTT: Thank you, Rich. Now we have

-- or Keith, 14

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

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

Closer? Bette r? Okay. 17

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

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

else for coming. 20

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

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

speak to you tod ay about New York City and the Mount 23

Sinai Hospital responder patients and how the Zadroga 24
9/11 Bill Health and Compensation Act may affect them. 2537 37 Madison Avenue Pharmacy is one of two independent 1

pharmacies that currently fill prescriptions for the 2

World Trade Center responders that are seen at Mount 3

Sinai World Trade Center treatment and monitoring 4

program. We've been serving this unique population 5

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

program and was solely funded by Bear Stearns. We w ere 7

the only pharmacy filling prescriptions for the World 8

Trade Center responders at Mount Sinai. 9

When we first started supporting this program, we filled 10

approximately ten prescriptions a month. As the program 11

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

prescriptions a month. In fact, we fill prescriptions 13

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

undergoing treatment. This is an impressive number 15

considering that these patients have the option of 16

filling their prescriptions with us or at a local retail 17

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

vicinity. 19

Madison Avenue Pharmacy is located one block from Mount 20

Sinai Medical Center. This close proximity has forged a 21

strong relationship between our pharmacy and the medical 22

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

This relationship was built on an outstanding service, 24

our knowledge and commitment to the patients and other 2538 38 health care providers. When the responder study started 1

in 2003 and the hospital needed a p harmacy to fill 2

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

a member of the community, we felt supporting this 4

important effort was our obligation, and we were only 5

too happy to help. 6

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

patient s from the study would literally walk across the 8

street, they would fill their prescriptions. As the 9

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

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

the doctor, we pick up the prescriptions fr om the 12

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

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

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

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

a day. 17

We run a 100 per cent transparent pharmacy benefit 18

administrator

-- let me reiterate that, a 100 percent 19

transparent pharmacy benefit administrator

-- to 20

electronically adjudicate all prescription claims that 21

are filled for the Mount Sinai World Trade Center 22

treatment and monitoring program. The administrator 23

that we have contracted with to process these 24

prescription claims has the ability to meet and exceed 2539 39 the pharmacy processing and reporting requirements that 1

are outlined within the Zadroga Act. This includes the 2

tran smission of data to a data center in any format that 3

is required. 4

When the program was developed it was designed as a 5

study to the effects

-- to study the effects of the 6

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

compliance became critical to the findings of the study. 8

This prompted us to start a program that we

-- that 9

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

prescriptions. 11

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

services, Madison Avenue Pharmacy picks up prescript ions 13

from the hospital, calls patients to remind them to 14

refill their prescriptions, mails out prescriptions to 15

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

percent transparent pharmacy benefit administrator that 17

has the ability to meet the chal lenges of the changing 18

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

that is less than the New York State Medicaid 20

reimbursement rate. 21

The standard of needs of the patients through constant 22

and open communication, coordinating and meeting with 23

Moun t Sinai Medical Center staff, picking up and mailing 24

prescriptions, as well as other pharmacy services such 2540 40 as respiratory aids, home health aids and surgical 1

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

that these patients have come to rely on

- - and frankly, 3

one that they deserve. 4
The James Zadroga 9/11 Act

-- Health and Compensation 5

Act of 2010 requires a competitive bidding process in 6

order for a pharmacy to secure a pharmacy services 7

contract. While we understand the bid process is a 8

necess ary tool, we are very concerned that a small 9

independent pharmacy such as Madison Avenue Pharmacy 10

does not have the nationa l experience necessary to bid. 11

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

can compete

-- and surpass

-- with the nation ally 13

recognized pharmacy benefit managers such as Medco, 14

Express Scripts and CareMore. We feel strongly that 15

excluding us from a pharmacy service contract would have 16

a negative an unnecessary impact on these patients. 17

With the passage of this bill into l aw, these patients 18

may lose their relationship with Madison Avenue 19

Pharmacy. Instead of continuing to be serviced by a 20

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

subject to an impersonal, mail order telephone customer 22

service representative wh o is employed by an uncaring 23

pharmacy benefit manager that cares more about wealth 24

care than health care. 2541 41 In closing, we ask that you give the small, local, 1

independent pharmacies that have already proven 2

themselves to this community the opportunity to co ntinue 3

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

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

or will. 6

Thank you. 7

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

have Glen Klein, Alex Sanchez and Anthony

-- Flaminia? 9

UNIDE NTIFIED: Flammia. 10

MR. ELLIOTT: Flammia? 11

UNIDENTIFIED: Flammia. 12

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

pronunciation. 14

MS. BAUMANN: Okay, my name is Ann Baumann

-- all right, 15

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

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

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

and a senior vice president of the FealGood Foundation 19

for the past six years. 20

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

my own husband, NYPD polic e officer C hristopher Baumann. 22

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

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

mound every day. 2542 42 One of the issues that we had in my family really quick 1
was that my husband, after 9/11, tried to shoot a pl ane 2

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

soon as the planes started to fly again

-- I think that 4

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

himself, twice. Shortly after that the family structure 6

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

and my 11

- year
- old son tried to kill himself, tried to 8

throw himself off of the school building. They caught 9

him climbing up the building. 10

Obviously they were diagnosed with PTSD. I deal with 11

over a thousand responders between the FealGood and 12

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

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

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

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

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

to kill themselves. 18

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

that post

- traumatic stress be included. In 2006 the 20

Surgeon General recognized PTSD as a physical injury 21

because of the stress that it causes me ntally and 22

physically on the body

-- heart, there's a hand

-- the 23

heart, just

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

yet

- to

- be

- appointed special master of the Victim's 2543 43 Compensation Fund should recognize PTSD as a separate 1

compensatable (sic) condition. 2

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

unfortunate opportunity to deal with. One of them is 4

kidney disease. Kidney disease can lead to cancer, 5

resulting in kidney failure and need for dialysis and 6

kidn ey transplant. This we know: t hat heavy me tals are 7

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

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

seen an increased rate of incidence in kidney ailments 10
within the 9/11 community. 11

Another ailment is neurodevelopmental disorders. 12

There 's a results

-- study linking in utero exposure to 13

mild and moderate neurological development problems. 14

Thyroid disorders

-- it starts out as a diagnosis and it 15

ends ending up in cancer in

-- in exuberant amounts, and 16

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

Neurological disorders, immunological disorders, 18

inflemary (sic) and connective tissue disorders, the 19

blood disorders and the skin diseases are popping up 20

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

-- it's

-- it's not 21

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

Ten minutes

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

definitely. 24

All right. Current research gaps that

-- that we have 2544 44 come to recognize is that research non

- covered 1

conditions emerging at increasing rates are including 2

research r eproductive abnormally

-- abnormalties (sic) 3

such as early sterility, infertility, early menopause, 4

early gestation pregnancy, and low birth weight in 5

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

of. 7

And now I'm at my end because I see my littl e red light. 8
We know from various 9/11 organizations, including 9

family groups, that as we approach the tenth anniversary 10

more people are coming forward for the first time 11

looking for services. Some organizations are now seeing 12

a different population surf acing than their primary 13

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

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

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

live locally, but

-- they're all now seeing problems 17

with their fami lies. 18

Much of this new population is looking for mental health 19

services through som

-- though some are looking for 20

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

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

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

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

addressed, because it is severe. 2545 45 The outreach for the clinical centers and data services 1

should utilize programs conducted by trusted community 2

and labor

- based groups with estab lished rapport with 3
these 9/11 responders and the populations of the 4

survivors. 5

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

MR. ELLIOTT: Thank

-- thank you for those comments, 7

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

Alex Sanchez, A nthony Flaminia (sic) and Steven

-- 9

Cholinski? 10

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

Thank you

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

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

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

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

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

- 16

related illnesses. I had planned to do 30 years. I 17
left a job that I loved dearly because of 9/11

- related 18

illnesses. 19

About four year s ago while seeking assistance I found a 20

group called the FealGood Foundation, which I know 21

everybody here is familiar with. They asked me to 22

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

board member, and I spent hundreds of hours in 24

Washingto n, DC fighting to get the Zadroga Bill passed. 2546 46 I'm also part of the Zadroga Action Team

-- which for 1

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

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

be an oversight to the oversight. We're go ing to make 4

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

government is used correctly, and is not squandered away 6

on a hospital that needs a new parking garage. 7

Couple of the other issues are the attribution of 8

illness to World Trade Center expos ure. We ask NIOSH to 9

use the same approach as the New York City uniformed 10

services for everybody

-- NYPD, the FDNY, sanitation, 11

and the survivor group, the civilians that lived down 12

around Ground Zero and the students who went to school 13

down there. 14

In 20 05 Governor Pa taki signed into law the World Trade 15

Center Presumption Bill. The bill states that if you 16
were healthy before 9/11 and you worked at Ground Zero, 17

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

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

that your illness was from your exposure to toxins at 20

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

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

professional, not the sick responder or the sick 23

civilian who lives down around Ground Zero. We feel 24

that the guidelines

-- or similar guidelines should be 2547 47 in place for everybody. 1

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

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

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

that presumption bill that was signed into law in 2005 5

by Governor Pa taki is something that is not being 6

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

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

They continually deny police officers disability 9

pension, and hundreds of sick police officers are denied 10

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

stop. 12

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

generation exposure, our children. We need to have 14

research on the incidences of affected children of male 15

responders whose partners conceived one or two, or even 16

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

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

-- responders

-- I'm sorry, responders of chil

-- 19

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

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

I have a 6

- year
- old son at home with severe ADHD. My 22

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

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

the school about his behavior. There's no history of 2548 48 ADD or ADHD in my family whatsoever. It may not be 1

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

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

the on ly case. 4

And the next important issue is participant care and 5

communication. There needs to be an intercommunication 6

among the Centers of Excellence. They need to share 7

information. At the very least, this makes for more

-- 8

more thorough medical monito ring. Presently an illness 9

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

covered at Mount Sinai or Robert Wood Johnson in New 11

Jersey. The same goes for prescribed medications. 12

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

covered at other cl inics. There needs to be one 14

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

includes LHI, which treats the out

- of

- state responders. 16

We also need a national information sharing system to 17

better serve the responders who came to New York to 18

assist us on 9/11, and those who moved out of state 19
after 9/11. We have no way of knowing how many of these 20

people may have died already because of their exposure 21
to 9/11, and they might not even know that they died 22
because of exposure to 9/11. This system, if put in 23

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

longer live in New York and are being treated by 2549 49 hospitals outside of New York. 1

And I thank you very much for your time. 2

MR. ELLIOTT: Thank you, Glen. If

-- just a note here, 3

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

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

the speakers' roster. 6

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

and then Steven. Thank you. 8

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

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

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

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

-- 12
after all these years, our 9/11 czar under the Bush 13

administration and once again direct or of these programs 14

under the Barack Obama administration. 15
My name is Alex Sanchez. I am a 9/11 responder. On 16

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

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

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

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

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

performed cleanup work in skyscrapers surrounding the 22

pit, ten buildings altogether. Many of these buildings 23

are considered on sit e, One, Two, Three World Financial 24

Center. 2550 50 Today we suffer from permanent total disability from the 1

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

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

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

advocating and educating two administrations, members of 5

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

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

economy and a nation. 8

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

quality of health care that we have been receiving at 10

Mount Sinai these past eight years. No program is 11

bulletproof, but we really believe these programs are 12

very close to that. 13

As a director of United We Stand, which is a non

- profit 14

organization

-- we are not a non

- prof it organization. 15

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

of other men and women who have been

-- have come in 17

direct contact with September 11th pollution and are 18

sick, very much guiding them and

-- and providing 19

support. 20

The lack of inf ormation is as bad as no information 21

whatsoever. My coworker and I truly understand that 22

many who have been affected by September 11 pollution 23

have yet to receive compensation

-- worker's 24

compensation. Under this recession, many of the sick at 2551 51 times don' t have the $4.50 to go to the appointment and 1

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

back to its roots and provide transportations for those 3
who are sick. This way, if you do not have the $4.50 to 4

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

able to miss out on your medical treatment. 6

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

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

here today, so we can have patients write their names

-- 9

or do not write their names

-- an d very much come up 10

with suggestions so we can make this program much 11

better. 12

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

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

Mount Sinai or other Centers of Excellence, and they 15

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

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

responder or

-- or a resident or someone who very much 18

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

going through. 20

Another issue is many of these cancers ar e a reality to 21
9/11 responders. For seven years we have been walking 22

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

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

no longer with us today due to cancer. It's very hard 2552 52 to look into the eye s of spouses and children, and know 1

that their parents and their loved ones are not here 2

because they were exposed and have died due to cancer. 3
Cancers are a reality among 9/11 responders and those 4

who have been exposed. 5

I would also would like to thank President Obama for 6

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

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

gentleman, raising his granddaughter due to September 9
11th pollution; NIOSH, the AFL/CIO, (unintelligible) 10

valentine, Mount Sinai for con tinuing to respond to the 11

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

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

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

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

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

go out there and continue to do the same for a group of 17
men and women that very much gave it their all. 9/11 18

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

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

mentor, we would never have gone upon this journey 21

without meeting this woman. 22

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

bless the United States of America. 24

MR. ELLIOTT: Thank you, Alex, for those comments. 2553 53 Anthony? 1

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

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

officer with the New York City Police Department, 4

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

this tragic day and fallout from this tragedy, not 6

real izing what we were going into but responding to all 7

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

over 200 hours, with various assignments within the 9

police department, which exposed me and others to the 10

toxic site which brings us here today, standi ng in front 11

of you. 12

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

all have been through and have suffered due to the 14

exposure. As a result of the attacks and subsequent 15

exposure, I was medically retired from the police 16

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

sustained at the World Trade Center in 2001. My 18

injuries include GERD, reactive airway disease, 19

obstructive sleep apnea, sinusitis, rhinitis, various 20

kidney dysfunctions, costochondritis, various 21

musculoskeletal disorders, and other minor skin 22

conditions; constant feeling of sickness, numbness and 23

disorientation; and finally, post

- traumatic stress 24

disorder with delayed onset, which is so severe that I 2554 54 often black out from when I

-- from

-- when I go from 1

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

My injuries started off with mild symptoms, and many 3

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

World Trade Center monitoring center needs to be 5

patient

- centered and developed in a way that promotes 6

the well

- being o f the patient, and all should be treated 7

with dignity and respect. 8

We are concerned that integrative treatment and 9

alternative medicine will not be covered in this Act. 10

Many have developed chronic illnesses, and have reached 11

the point where their health is no longer improving. 12

They have reached the maximum medical improvement. 13

Alternative therapies have reported that the pursuit of 14

integrative medicine has improved their health and 15

quality of life with these alternative therapies. 16

A stand

- fast commitme nt must be made to research funding 17

for the treatment for the World Trade Center illnesses. 18

Gentlemen, I offer the following explanation for you all 19

to think about. The medical and scientific communities 20
have not seen anything like the fallout from 9/11 i n 21

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

of the box, and reach beyond the current band

- aid 23

approach. In the current system first responders are 24

treat

-- are being treated for symptoms. In many cases 2555 55 the root causes are not being addressed . Toxic 1

exposures, complications from medications, and 2

structural abnormalities are going untreated. There is 3

a need for an integrative medical monitored approach. 4

This is not a self

- administe red or alternative approach. 5

The integrative model looks at t he patient in a 6

comprehensive manner. Signs, symptoms, medical history, 7

extensive blood work and tests, medication history 8

supplements lifestyle, diet and mental state. It is 9

needed to put together a successful treatment plan that 10

targets the root causes of illnesses and advocates for 11

the patient. The integrative model embraces the 12

traditional medical model and opens up to additional 13

treatment options su ch as medical acupuncture, 14

nutra ceuticals and nutrition, osteopathic manipulations, 15

detoxification pro grams, and injection therapies. We 16

need to look at how various medications are interacting 17

with one another, and their compounded side effects and 18

complications. 19

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

That's unacceptable. This is not h elping them to 21

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

especially when their regular insurance would cover the 23

medications. These therapies have improved many of my 24

other conditions, as well as has offered some pain 2556 56 relief. As I progresse d and completed my treatment, I 1

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

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

relieve several of my physical and overall mental 4

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

Centers of Excellence that they are offering some 6

alternative means of treatment, and there are only a 7

couple of slots open for responders. 8

On the advisory panel we were told some methods are 9

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

thousand people

-- n ot acceptable. 11

Please accept these explanations and re

- evaluate the 12

current treatment at the Centers of Excellence to direct 13

some of the funding for this. 14

Thank you, gentlemen. 15

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

Steven Choinski? Fol lowed by William Moore, then 17

Michael McPhillips. 18

MR. CHOINSKI: Thank you. I came here originally

-- I'm 19

a member of the FealGood Foundation. I have nothing

-- 20

I'm sorry, I'm sorry

-- I have nothing rehearsed; this 21

is all from the heart. Okay? 22

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

speak today. All I was

-- I was going to put my suit 24

and tie on and shave (indiscernible ). Thank you. 2557 57 Okay. In all seriousness, from the heart

-- okay? In 1

1982 I went to college and I graduated from Br ockport 2

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

outpatient Viet Nam veterans, and I'm going to get to 4
9/11 and a little correlation here. Okay? I sat at a 5

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

the head of psychiatry and all the medical

-- and I did 7

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

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

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

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

-- little 11

puke there, an d I said oh, your little bureau

-- your 12

little liberalism ideas as a little college student is 13

never going to pass. 14

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

Manhattan and I see this zipper

-- VA Administration, 16

federal government settle large la wsuit with Viet Nam 17

veterans for $55 billion

-- whatever the amount is. Ten 18

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

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

how long they had to wait to get treated. 21

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

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

friend in the police department, Rich Ruggerio, who 24

cannot make it today, he's very sick, has cancer. He 2558 58 had throat cancer. He's in recovery. 1

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

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

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

orphans from every trade

-- construction workers to 5

firemen to policemen to cleanup workers, whatever they 6

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

because that

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

could be me tomorrow. They need treatment. 9

Last I heard there's this place calle d Sloan

- Kettering. 10

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

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

the world. Anybody who knows anything about cancer 13

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

goes to Sloan

- Kettering because we are the leaders of 15

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

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

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

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

have my own issues with illnesses. But that

-- it's not 20

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

to speak for. 22

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

sorry. 24

So that's what I want. I want Mount Sinai to 2559 59 coordinate, along with the federal funding, to get 1

Sloan

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

with this list of cancers

-- and like the detective that 3

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

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

-- we 5

were all poisoned down there, everybody who worked down 6

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

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

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

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

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

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

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

help what they need now and let's

-- let's get Sloan

14

Kettering going, and let's Mount Sinai and

-- and the 15

doctors of the world and the admin istrators of the 16

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

it going. 18

Thank you. Thank you. 19

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

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

-- 21

William Moore. 22

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

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

horrific day of

-- for America. According to the 9/11 2560 60 commission report it was a day of unprecedented shock 1

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

ad dress the uncertainty about the short and long

- term 3

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

miscalculated steps were taken to minimize our exposure 5

and vulnerability to our country. These miscalculated 6

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

This protection would require individual sacrifice, some 8

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

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

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

we came together in uni ty as a strong nation. But as 12

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

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

some of us are here today. These miscalculated steps 15

have yielded severe consequences. Findings of these 16

miscalcul ated steps have been exposed in many reports, 17
including the 9/11 commission report and the EPA's 18

inspector general's report. Mandated environmental 19

studies were interfered with and manipulated. Accurate 20

investigation was prevented in both timeliness and 21

access. 22

Many of us affected by the consequences of this 23

miscalculated steps have mistrust in the handling of the 24

Zadroga Bill funding. Plausible deniability is a 2561 61 primary reason. Scientific research shows potential, 1

suggestive and probable causation for health effect s to 2

all the body systems and dy sfunction of all the organs 3

of those exposed by the toxic cocktail created by the 4

collapse of the World Trade Center buildings. Yet 5

presented by New York City's update reports, disease

6

wise only one and a half body systems have been 7

associated with health effects caused by the World Trade 8

Center toxic exposure. This includes the respiratory, 9

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

Through one of the centers

-- through the centers of the 11

ex
-- C enters of Excellence established by New York City 12

and the federal government, evaluation and treatment is 13

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

referred to our health

-- our own health care providers, 15

utilizing our own insurance or out of pocke t funds for 16

other system ailments and treatments. As we all know 17

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

action suit due to its mishandling and mismanagement of 19
the World Trade Center 9/11 events, so is it any wonder 20

that minimal health effect s have been identified through 21

the screening and treatment programs that were sponsored 22

by New York City. Minimal effects

-- minimal health 23

effects means minimal liability. 24

Identification o f specific ailments has less impact than 2562 62 a detected systemic dise ase which affects multiple 1

organs and systems. The program screening and treatment 2

program design is flawed and needs to be redesigned to 3

screen, evaluate and treat all potential and probable 4

cause health effects from the exposure, and adjustment 5

should b e made for the pu rpose of compensation as well. 6

Those suffering from other than permitted ailments lose 7

twice

-- once for proper health care and once for 8

compensation. 9

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

evidence that shows that the e xposures that we had to 11

the different chemicals and heavy metals can yield 12

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

urging others as myself to petition for redesign of the 14
program and refunding the removed $4 billion for the 15

Zadroga Bill that was basically stolen from the till. 16

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

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

back that $4 billion. 19

I thank you for your time. 20

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

Michael McPhillips, followed by William Gromer and 22

Nehemiah

-- 23

UNIDENTIFIED: (Unintelligible) 24

MR. ELLIOTT: Okay, you did it. Very good. You got it. 2563 63 Yes, sir. Thank you. 1

MR. MCPHILLIPS: Hello, my name is Michael

-- Captain 2

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

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

a privately

- held company that carries approximately 5

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

New York City. I was the port captain in charge of the 7

ev acuation and support operation on 9/11 and the days 8

thereafter. At 8:47 a.m. on September 11th I received a 9

phone call from a deck hand informing me that a plane 10

had hit the World Trade Center, and that one of the 11

towers was on fire. After grabbing certa in staff 12

members, I immediately took a boat to the World Trade 13

Center and upon arrival began directing the waterway 14

evacuation. I also worked with New Jersey Transit to 15

set up the two triage areas and the one decontamination 16

area on the Jersey side of the river. 17

In the days that followed I was in charge of New York 18

Water

-- in charge of waterway transportation for the New 19

York National Guard, and we also went down to the site 20

every day with family members of the deceased. I was 21

fortunate enough to be able to serve, you know, my 22

country and be part of the largest water evacuation in 23

recorded history of the world. I would not trade that 24

honor for anything. 2564 64 However, I became disabled in September 2003 and was 1

forced to retire. It was not until 2006, after a series 2

of tests and much research, I became aware that my 3
illness was directly related to 9/11. I got sick, and I 4

just thought I was sick like everybody else. 5

I've had the privilege of being able to support the 6

FealGood Foundation in its effort to get the Zadroga 7

Bill passed. I've traveled to Washington more than a 8

half a dozen times over the last three years to help 9

advocate for this bill. Now that it is passed, we have 10

created the Zadroga Action Team to advocate for the 11

proper implementation of that Act. We urge NIOSH to 12

ensure that there is an agreed

- upon, consistent quality 13

of medical care and treatment provided by all 14

participants in the world health program. 15

There needs to be consistency of treatment. 16

Participants who are communicating identic al symptoms 17

during the monitoring process at each Center of 18

Excellence must be treated the same in consistent 19

manner. Disparities among treatment offered by 20

physicians at the various Centers of Excellence must 21

end. Disparities in the determination of pro gram 22

eligibility based on reported symptoms and conditions 23

must end. Participants need to be treated holistically 24

at one center. The practice of referring patients back 2565 65 to their own doctor for certain symptoms and ailments 1

rather than being treated at th e center must be 2

considered. 3

There needs to be consistency in evaluation. There 4

should be a consistent standard for evaluating symptoms 5

and ailments needs to be established and followed by all 6

Center of Excellences and administrative programs. 7

There sho uld be timely reporting of test results. 8

Centers of Excellence must inform participants of test 9

results in a timely manner, enabling participants to 10

access treatment without delay. Most medical 11

practitioners provide test results within seven to ten 12

days. Sometimes it'll take weeks and weeks to get it 13

from the World Trade Center. 14

There must be research for first responders' children 15

and spouses who now have illnesses resembling those of 16

the responders. I have two kids. They both have 17

asthma. One has s leep apnea, and they suffer from all 18

sorts of illnesses. 19

The covered conditi ons
-- PTSD, again, (indiscerni ble) 20

standard cite, in 2006 the Surgeon General declared it 21

as a physical illness. It must be considered like 22

everything else. 23

Transparency, we ha ve to have transparency in 24

everything. 2566 66 You know

-- you know, we all stepped up to the plate 1
when we were asked to on 9/11 and the days thereafter, 2

and now we ask you to help us make sure that everyone in 3
the 9/11 community is given the best care possible. 4

Thank you. 5

MR. ELLIOTT: Thank you, Michael. William Groner. And 6

after William we have Nehemiah, then Susan Sidel and 7

Reggie Hilaire. And we have no further sign

- ups after

- 8

- after that. So again I would encourage anyone

-- you 9

know, we could take a break, but anyone who wants to 10

speak may want to sign up, so... 11

You may proceed, William. 12

MR. GRONER: Hi. I'll

-- I'll stick around afterwards 13

for specific questions. 14

Mr. Elliott, Dr. Howard, thank you for hosting this 15

forum. Dr. Howard, it's very n ice to see you again 16

since we met many, many years ago. You showed an early 17

interest and sensitivity to the plight of the 18
rescue/recovery workers back I think in 2002 when we 19

first met and we talked about cancer, and I'm so happy 20

that you're part of this program. 21

My name is Bill Groner and my firm, Worby Groner 22

Edelman , in White Plains started this litigation back in 23

2003. We t hen joint

- ventured with Napoli and Be rn and 24

have

-- and now represent over 10,500 first responders 2567 67 and cleanup workers. 1

I have b een tasked

-- I took it on myself to take care 2

and review and study and analyze the medical side of 3

this, and I've done so for seven years. I've studied 4

the medical periodicals, the peer

- reviewed articles, Dr. 5

Perezant's great work, as well as cataloguing the 6

illnesses seen by our

-- our cohort of over 10,000 7

clients. 8

One of the most difficult parts about this litigation 9

and representing these clients is the one question that 10

I could never answer. And that was: What about the 11

future? What about the unk nown? What about the 12

illnesses that may develop? Who's looking into that? 13

Who's protecting us? Who's involved? Who cares? And 14

certainly a great moment was when Zadroga was passed, 15

just the health and monitoring side, because I felt for 16

the first time somebody will be in charge of looking at 17

this. Somebody will look ahead of the curve. 18

And by the way, I want to thank Congressman Ma loney, 19

Congressman Nadler, Ben C habot, the FealGood 20

organization, who just did fabulous work in getting this 21

thing passed

. 22

What I'd like you, Dr. Howard, to focus on

-- and I've 23

come up with about five things in my mind of issues 24

about future illnesses that I hope that you look at. 2568 68 First of all, unfortunately the medical community needs 1

to be

-- is conservative by definiti on. They need to 2

see the illnesses develop for years and years before 3

they start discussing it, before they talk about 4

relationships. I mean just the first study came out 5

multiple myeloma where they only had eight in the study 6

last year. We've known abo ut more than that in our data 7

pool for many years. By definition the medical 8

community

-- it takes some time. They have to get grant 9

money. They have to do the study. I hope that you can 10

be more aggressive than that. I hope that you have a 11

standard ab out looking at illnesses that, if they're 12

suspicious, we don't have to prove it beyond a 13

reasonable doubt. If they're suspicious, you will look 14

at them. 15

Five

-- five groups that I want to talk about real 16

quickly. First one is cancer. All we can talk ab out 17

cancer now is epidemiologically, what's the incident 18

rate of the cancers. Studies will come out in

-- over 19

the years. We don't have years. We need to jump on 20

this right away. My biggest concern is that if you're 21

only relying upon the cancer inciden t rate from the 22

Centers of Excellence, that's not all the cancers. We 23

have a number of cancer clients who are going to other 24

institutions. Somehow that data needs to be pooled. 2569 69 You need to be aware of it. If there's greater 1

incidence of multiple myelom a that Mount Sinai's seen 2

from Ground Zero, you need to know that now. And I 3

would like to continue

-- or start a dialogue and 4

continue that dialogue. 5

Second, interstitial lung disease. I have hundreds and 6

hundreds and hundreds of clients with nodes, no dules, 7

granulomas

-- this is scar tissue of the lungs

-- 8

suspicious CAT scan findings. I don't think there

-- 9

it's being paid attention to. If it's the precursor to 10

interstitial lung disease, it needs to be looked at. I 11

mean a five

- year Mount Sinai stud y showed abnormal FVC, 12

higher than they thought, and that's precursor, 13

potentially, possibly, to interstitial lung disease

-- 14

has to be looked at. 15

Third, idiopathic diseases . There are unusual diseases. 16

People were healthy beforehand, and they're not now , and 17

they're across the board. We have a couple of clients 18

with IGA nephropathy, severe kidney disease, that no one 19

is taking seriously. It's suspicious. You should look 20

at these things. There's many idiopathic diseases

-- 21

thyroid diseases, cardiac is sues, dermatological issues 22

-- that people are not necessarily relating. I pray 23

that you do that. 24

Two other quick ones

-- sleep apnea, I see the studies, 2570 70 they say maybe it's not related. But you know what, I 1

have hundreds and hundred s of clients with sl eep apnea. 2

I understand that you

-- generally it's felt you have to 3

be

-- a high body mass index, you have to be overweight, 4

maybe it's related to sinus. But we have clients that 5

don't have chronic rhinosinusitis, they're not 6

overweight, and they have sle ep apnea, and they're on 7

oxygen. This needs to be studied. 8

The last group is GERD. GERD is looked at as sort of a 9

casual disease, take some Nexium, no big deal. But GERD 10

can cause Barrett's esophagus. We have a lot of clients 11

with Barrett's esophagus. That's a precursor to 12

esophageal cancer. 13

What I pray that you do is you look at these diseases, 14

you study them, and you educate all of these first 15

responders about symptoms

-- if you have them, go to the 16

doctors; you educate the doctors

-- this could be Ground 17

Zero

- related, here's what you have to do; and you work 18

on early detection. These people need to know they can 19

go to sleep at night knowing you're thinking about 20

preventing future diseases. 21

Thank you. 22

MR. ELLIOTT: Thank you, William. We

-- befo re we have 23

Nehemiah come up we're going to take a ten

- minute break 24

-- a comfort break, if you please

-- and we'll be right 2571 71 back at ten till. 1

(Recess taken from 10:44 a.m. to 10:58 a.m.) 2

MR. ELLIOTT: Thank you. Thank you for coming and 3

commenting. Plea se take your seats so that we can be

-- 4

get started again, please. 5

(Pause) 6

All right, if we can restart here, we're going to 7

restart with Nehemiah Bar

- Yehuda. 8

MR. BAR

- YEHUDA: It's

-- that doesn't

-- does it? Ah, 9

okay, okay. 10

So as you know by now, my name is Nehemiah Bar

- Yehuda, 11

and as you know also, I have an Israeli accent, so if 12

you don't understand me

-- we speak fast in Israel

-- 13

please ask me to slow down. Okay? 14

I start with a few personal note and then I'll read from 15

my written testimony. 16

I s tart with

-- from

-- with some personal note, and 17

then I'll read from my written testimony. 18

Since I'm

-- was in high sch ool in kibbutz in Israel, 19

besides teaching yoga and doing body/mind work for

-- to 20

( in discern ible) people, has been to see a social ne ed 21

and to respond out of the box what society doesn't do. 22

So the first charity, after serving in Israel, in 23

America is serving those who serve, which give holistic 24

medicine to detoxify the body. By now the two thousand 2572 72 and six hundred of the people, many of them are sitting 1

here, including John Feal and many of his people, 2

including the first people who testify, Rhonda Villamia 3

and Jennifer Spano

-- they give me permission to mention 4

their name

-- the person who speak after me, and they 5

all claim the bene fit and they come to volunteer for us 6

because we don't get the money so we need volunteers. 7

We are self ( in discern ible) as volunteer. I work

-- I 8

volunteer as a body work therapy in

-- across the street 9

from the pit and the cafeteria. Those of you who w orked 10

there remember. And then in St. Paul Church until they 11

closed it. 12

And I straight away saw that people were coughing and 13

the press was not reporting, except for one article by 14

Sanchez, I think was his name, from The Daily News . So 15

I realized here i s a need. I realized that the most 16

neglected as outcome of this tragedy is going to be the 17

pollution, before anybody was talking about it. I've 18

seen it in Agent Orange. I've seen it in

-- commando 19

people who were

-- in Israel who were doing

-- in deep 20

w ater, toxic water. It takes years for society to 21

recognize the problem. But here, unfortunately, the 22

problem was in the lungs, so it come fast, they had to 23

respond fast. That problem number one, I realize. 24

Problem number two I know, they are going to w ork on the 2573 73 symptom and if it's medicine, which is great, but they 1

are not going to detoxify the system because it's not

-- 2

it's out of the box. So I look for protocol and I 3

research with three of my friend in charity, and we 4

found a protocol that cleanse the system

-- the lungs, 5

the body, and support the immune system. People told me 6

-- good people, told me, nobody from the fire department 7

are going to come to you, because of the effect. The 8

captains are telling one another, they inviting us with 9

-- behi nd the back of the fire department to the fire 10

houses and a thousand and two hundred people, which is 11

close to ten percent of the people who were there from 12

the fire department, have been treated by us. 13

Now, we are not perfect of a organization, and our 14

m ission is to help people recover from both the physical 15

illness and the psychological stress o f 9/11. Our main 16

program are Ay urvedic herbal formulas which were 17

developed by world

- renowned Ayurvedic doctor, Pankaj 18

Naram, who has worked with Mother Theresa and the Dalai 19

Lama. Ayurveda, for those of you who don't know, is the 20

ancient medical art and science of India over 5,000 21

years. 22

Our programs are supervised by W estern MDs, le d by our 23

chairman of the board, distinguished integrative 24

psychiatrist Dr. Rich ard Brown of Columbia College of 2574 74 Physician and Surgeon, and gives over

-- who

-- who is 1

teaching Columbia College and give over 200 medical 2

conference talks a year all over the world. 3

Our Ayurvedic

-- our Ayurvedic herbal formula are meant 4

to be integrate d with whatever medical 5
protocol/pharmaceutical one is doing. Which mean we are 6

not alternative. We are not fighting with medical 7

profession. We want to work together. Okay? 8

A study was done of our herbal program by Dr. Kathy 9

Falks of Mount Sinai Coll ege of Medicine and Dr. Jim 10

Dahl, then senior researcher at Phoenix House, one of 11

the top drug treatment program in the U.S. This study 12

was published in the peer

- reviewed journal, Alternative 13

Therapies in Health and Medicine . You can see it on the 14

front page of our

-- you can
-- link on our web site. 15

In this study our program participant reported that Dr. 16

Naram's herbal formula that we distribute for 9/11 17

toxicity were 32 percent more effective for them than 18

any other treatment they tried. There's a sta tistic way 19

of questioning and writing it by scientific, and it was 20

done this way

-- this way, and it's a huge statistical 21

difference, 32 percent, including emotional challenges. 22

Why it works? Because our approach was

-- you have to 23

deal with the root cau se. You have to cleanse the body 24

of toxin. It's not enough to treat the symptoms. You 2575 75 better do it be

-- many people came before they had 1

cancer and maybe they don't have cancer because of it. 2

If they have cancer, they still

-- we still can help 3

them an d so in all these conditions. 4

We have a

-- the first person who came to us, when he 5

came to us he was the first fireman. He was our guinea 6

pig when we start

-- start

-- tried. We had

-- he had 7

30 percent lung capacity, but now he has more than 70 8

percen t. Some firemen came back to force. They were 9

retired and they came back. Now one of them is now 10

captain

-- became captain. 11

Our other main programs are Breathwork and Meditation 12

workshops

-- one of them is going to be given this 13

weekend and next weeken d in Staten Island

-- taught by 14

Dr. Brown. Dr. Brown has taught these workshop all over 15

the world, to health professional as well as people 16

affected by trauma, as natural disaster, Viet Nam war, 17

Afghanistan and so and so. In emotional trauma it did

- 18

- he helped them with their physical and emotional, in 19
addition to those who serve the 9/11 community. 20

Dr. Brown and his wife work together integrative

-- 21

she's integrative psychiatrist also, Dr. Patricia 22

Gerbarg. They have gathered research done in peer

23

rev iewed journals and are conducting research that 24

demonstrate that the techniques that they teach in this 2576 76 course have dramatic effect in both reducing the symptom 1

for the worst kind of trauma, raising lung capacity, and 2

helping the enormosity (sic) of the ps ychological 3

process such as

-- and psychological post

- traumatic 4

stress. 5
The experience of the 9/11 community that trust us and 6

come to us without any advertisement, without

-- we have 7

research, but we still don't have the money for blind 8

test research

-- shows that our work should be 9

researched and financially supported by the Zadroga Bill 10
as an important contribution to helping the 9/11 11

community heal from both the physical illness and the 12
psychological trauma associated with 9/11 illness. 13

To close, peop le from 9/11 who were volunteering get our 14

herbs for free with the amount of funds that's been 15

given. Our cost by (unintelligible) give it for the 16
resident is $30 a month, one dollar a day. 17

With a fraction of the $4 billion, small fraction, for 18

research to prove the efficiency of program like us and 19

other program

-- I don't want to claim exclusivity

-- in 20

addressing the root cause, thinking out of the box, 21

y'all commission and all other organizations involved 22

can save so many life that it's worthwhile tes ting and 23

funding. 24

Thank you. I appreciate it. And the person who talk 2577 77 after me is also one of our recipient, please. 1

MR. ELLIOTT: Thank you, Nehemiah. Susan Sidel, and 2

then we'll have Reggie Hilaire. 3

MS. SIDEL: Hi, I'm Susan Sidel. How are you? O kay, 4

can you hear me? No, I don't want to hold it. 5

My name is Susan Sidel, and

-- you can't hear me. 6

Closer to my mouth? Is t hat better? Okay. All right. 7

Thank you. 8
My name is Susan Sidel, and before 9/11 I was an 9

attorney

-- an entertainment attorn ey. Now I'm 10

disabled, totally and permane ntly. I have brain damage. 11

I have a connective tissue disease. My back is falling 12

apart. My lungs are

-- actually have improved because I 13

-- I was in

-- I did take the herbs that Nehemiah is 14

talking about. I st arted them in 2009, and also I did 15

the Breathwork, and you can ask Dr. Crane*, because he's 16

my doctor and he has all the

-- all the data. 17

I have two things that I wanted to talk about. One is 18

all this talk about medical research linking toxins to 19

the Wor ld Trade Center. And the second thing I want to 20

talk about is the New York State Worker's Compensation 21

volunteer program. 22

The first thing I want to talk about is

-- let's talk 23

about the

-- the studies that are out there. And you 24

know, my father is a

-- well, he's retired now, he's 88, 2578 78 but

-- but he was one of the very first OSHA engineers. 1

He had to be certified when OSHA came into being. He 2

went to MIT

-- had to go back to school and, you know, 3

learn all about OSHA. And in his study I found this 4

littl e book called The Rapid Guide to Hazardous 5

Chemicals in the Workplace , and it's a really easy 6

booklet. You look up the chemical and it says, you 7

know, what happens when you're exposed to it. And it 8

talks about different kinds of exposure, you're exposed 9

through the skin, you're exposed through the nose, you 10

know, did you drink it. So for example, mercury. There 11

was a gentleman that was talking about the light 12

fixtures in the twin towers, so in this book, Fallout by 13

Juan Gonzalez, he won a Pulitzer for t he research that 14

was in The Daily News , I think there's some

-- I think 15

he says that there's

-- there were 500,000 fluorescent 16

lights just in the twin tower buildings alone, so that's 17

a lot of mercury. 18

So this book

-- this is from 1984

-- it talks about h ow 19

mercury causes brain damage. And in this book, which is 20

like a new book that NIOSH puts out, along with the CDC, 21

it says the same thing. So I don't understand the 22

disconnect between the way the whole program is run and 23

what you're calling research. B ecause this is your

-- 24

not

-- I'm not

-- I don't mean you, I mean the 2579 79 government, so it's not you personally, please. I mean 1

I don't understand the disconnect because it's well 2

established what toxins

-- certain toxins can do to 3

people physically. And if I were running the program 4

from the very beginning, from day one

-- and I realize 5

that you were hindered by the Bush administration

-- 6

what I would have done is I would have made a list of 7

all the chemicals that were down there and all the 8

potential healt h hazards that could come as a result. 9

So for example, the three cognitive tests that I've had 10

that show that I could never have gone to law school 11

with the brain that I have now, I could never have 12

passed the New York Bar with the brain that I have now 13

b ecause I have so much brain damage, you know, from 14

exposure probably to mercury and lead

-- that would have 15

been figured out at the very beginning, and maybe that 16

would have been something that could have been treated. 17

I have a connective tissue disease t hat took two years 18

in Worker's Comp court to prove. And the way that that 19

got diagnosed was not through Mount Sinai; it was 20

through

-- I had to go to a private doctor because it 21

wasn't on the

-- back in those days it wasn't on the 22

list of conditions that were
-- I don't think 23

musculoskeletal issues we re even on the list generally. 24

I think that was added later because I remember talking 2580 80 to Dr. Herbert about it and, you know, connective tissue 1

disease falls under that. So I have like a positive 2

ANA, and som etimes I have a positive anti

- DNA. It's 3

like well

- established that, you know, you can have a 4

connective tissue disease

-- sometimes it happens from

- 5

- hereditarily, but usually with women it would affect 6

you
-- you'd find out in your early twenties. For me, 7

it happened to me in my mid

- forties. So the other way 8

that you can get a connective tissue disease is from 9

exposure to toxins. I mean that's not

-- that's not new 10

information. 11

That's like very well

- established that

-- so when I was 12

listening to this gentleman here, he sounds like his 13

symptoms are very similar to mine. But because he 14

didn't go to a rheumatologist and have that panel of 15

labs done where they test

-- you know, they don't just 16

do a complete blood count. They do

-- they

-- they do a 17

rheu matological panel and they're testing for like your 18

-- you know, your anti

- ANA and your anti

- Ro and your 19

anti

- DNA, and they're testing like your IGG and your IGA 20

and all those other immunogammaglobulins

-- I'm so not a 21

doctor and I did bad in science. But you know, there 22

are tests that could be done. And you know, the doctors 23

at Mount Sinai are

-- are not expert rheumatologists, 24

nor should they be. 2581 81 And what I don't understand is, this is America, and you 1

know, we have so many brains here, and especially in New 2

York, why aren't you

-- why aren't you engaging Sloan

3

Kettering to help with cancers? Why aren't you engaging 4

Hospital for Special Surgery to look into 5

musculoskeletal issues and

-- and autoimmune diseases? 6

You know, why aren't you getting the big gest brains in 7

the country involved in this? 8

I'm from Boston originally and I have a friend that was 9

also a volunteer. She drove down from New Hampshire, 10

and she has to drive to Worcester, Massachusetts

-- 11

which is not a nice place

-- to go to a hospital , one of 12

the Centers of Excellence, that, you know, is

-- I think 13

it's affiliated with U. Mass., which is

-- has a really 14

good public health program. But you know, my question 15

is why don't you have Harvard's public health program 16

involved? I mean they're like the number

-- you know, 17

they're like tops. I don't understand why we're not 18

getting the best and the brightest involved. 19

And the other thing that I wanted to talk about just 20

really quickly is with the Worker's Compensation program 21

because with my t reatment there's been such a delay 22

fighting my doctors, fighting Dr. Crane, you know, 23

fighting my doctors at Hospital for Special Surgery, 24

that it has hindered my health. And I know that they 2582 82 got $15 million from the federal government and there's 1

about 1 400 and

-- I think 1400 or so volunteers

-- 2

unpaid volunteers, sorry, that are in that program. Why 3

are they fighting these claims? That

-- that bill that 4

created that fund, we're supposed to be treated 5

expeditiously and compassionately. That has not be en 6

the case. I mean sometimes they're

-- they're good at 7

things, but for the most part it's not the case. And 8

why hasn't there been an accounting to see how much 9

money is spent fighting claims versus

-- versus just 10

treating them? Because if I'm winning all those cases, 11

then what's the point of

-- of taking me to court, you 12

know, three times and doing a bunch of IMEs? It's a 13

waste of money. 14

Thank you. 15

MR. ELLIOTT: Thank you for those comments, Susan. Now 16

we'll hear from Reggie Hilaire, followed by Ba rbara 17

Horn, then Darcia Hemphill. Reggie? 18

MR. HILAIRE: Hi, good morning. Can anybody

-- 19

everybody hear me? 20

All right. Thank you, Dr. (sic) Elliott, Dr. Howard, 21

for this forum. I'm a New York City police officer. I 22

was appointed

-- I was hired in Se ptember 2000, 23

graduated from the Academy May 2001. I spent over 850 24

hours at Ground Zero on Staten Island. In 2005, at the 2583 83 age of 34, I was diagnosed with thyroid cancer in June 1

of 2005, and then multiple myeloma, a blood cancer, in 2

December 2005. 3

At th e time, I didn't know anybody that worked down 4

there that had cancer. 2011 I know of 13 MOS

-- that 5

means members of service

-- of the New York City police 6

department with cancer, and two unfortunately passed 7

away. 8

When you're dealing with cancer you're not dealing with 9

-- you're

-- you're being thrown at everything, and the 10

least on your mind is "Oh, I have to notify the City, I 11

have to notify Mount Sinai." But because I had so much 12

time on my hands because I was out sick, I went on the 13

computer and I w as like okay, let me notify Mount Sinai 14

and let me notify the New York City's World Trade Center 15

health registry. I told them that I have cancer. I 16

have thyroid. I have multiple myeloma

-- just to cover 17

-- just to let them know, to let everybody know. 18

I'm being treated for both cancers at Sloan

- Kettering, 19

which if you know in New York City, that's the best 20

place in the world to go. I told my hematologist about 21

my work down there, and months later

-- I have to go 22

every couple of visits, every couple of months

-- he 23

comes to me and like "You're a cop?" I said yeah. "You 24

worked at Ground Zero?" I was like "Yeah, I did; why do 2584 84 you ask?" "Well, I'm seeing other patients with blood 1

cancers." So I asked him "Do you think there's a link?" 2

Like "I don't kno w, it's too early to tell." 3

I support everybody's help with the Zadroga Bill as 4

great, but when I downloaded the law and I read it, I 5

was kind of shocked because in order for a cancer to be 6

added, we need published evidence. However, I hope I'm 7

not readi ng it wrong, other conditions and interested 8

parties can petition the administrator to add this

-- a 9

condition to the list. I have a problem with that 10

because it's

-- it seems we're separate and unequal. 11

People with cancer

-- the guys I know have cancer, the 12

last thing on our minds was to

-- to notify everybody. 13

However, I'm very concerned about people down the line

- 14

- other cops, other firemen, other first responders 15

regardless of what they

-- how much they did or what was 16

their affiliation, would they be afforded the same 17

rights? However, I'm not trying to say we're different 18

or special than anybody el se. We all worked down there. 19

We're all brothers, sisters together. However, cancer

- 20

- we're

-- we feel like that we're the stepchild. We 21

know, we're hearing people with cancer. However, our 22

burden of proof is different. 23

I propose that it shouldn't be separate and unequal. We 24

should have the rights

-- the rights. My union knows I 2585 85 have cancer. My union introduced me to other people 1

that have cancer. Why can't

-- and the police 2

department, the medical division, knows of myself and 3

others. I believe, like other speaker have said, we

-- 4

we have a small window of opportunity, about five years, 5

before Zadroga has to be re

- funded. Being a New Yorker, 6

be ing a cop, I'm being very cynical. I don't know we're 7

going to get re

- funded at this point. I feel everybody 8

should be proactive. The unions should tell the 9

administrator, this is

-- our members have this. The 10

administrator should go to the

-- to the d epartments, 11

the fire department, the NYPD, to ask you guys, ask the 12

agencies "Hey, you guys are seeing anything? Are your 13

members sick?" I just feel it's very slow. We need

-- 14

as a cancer survivor, I feel like I'm proactive. This 15

caused me to be proact ive. We have a small window of 16

opportunity to do this before members die and other 17

people have cancer. We're not even thinking about it. 18

The doctor

-- the medical community is not even thinking 19

about cancer. When I tell them about this, everybody, 20

they 're like "Well, we're not sure." The red light 21

should go on. We should think outside the box because 22

this is unprecedented. There's no medical evidence

-- 23

just, again, be proactive. We should be afforded the 24

same opportunities to petition the administr ator, either 2586 86 us as victims, as first responders, or our unions or our 1

agencies or anybody, because right now I just feel the 2

letter of the law is

-- the administrator goes by the 3

letter of the law. It's not fair. 4

And thank you very much. 5

MR. ELLIOTT: T hank you, Reggie. And now we'll hear 6

from Barbara Horn, followed by Darcia Hemphill, and then 7

Dr. Margaret Dessau. 8

MS. HORN: Good morning. Can I be heard? Closer? Just 9

right? Okay. Do this (indicating) in the back if my 10

voice goes down. 11

I'm going to go off

- script just for a moment because 12

this is a poem that I have heard read, and read 13

sometimes when we remember September 11th. It's by Jane 14

Stanton Hitchcock. It's a quote, really. 15

(Reading) A violent act pierces the atmosphere, leaving 16

a hole th rough which the cold, damp draft of its memory 17

blows forever. 18

So I think we're feeling that draft. My name is Barbara 19
Horn. During the 9/11 recovery I served my country as a 20

volunteer at St. Paul's Chapel. St. Paul's Chapel is 21

where George Washington a nd members of Congress walked 22

to immediately following the swearing

- in of our first 23

president. This is the house of worship where they came 24

to pray for the strength and courage they needed to 2587 87 govern our brand new nation. 1

St. Paul's Chapel is also the pla ce where thousands of 2

recovery workers walked to day after day, night after 3

night, as they cleared the wreckage and recovered the 4

remains of those who perished at the World Trade Center

. 5

This is the house of worship where they came to pray for 6

the strength and courage they needed to continue their 7

labor of love at the site of the first attack on our 8

nation's shore. 9

I am part of the Zadroga Action Team. I'm also a 10

veteran of the lengthy and ultimately successful 11
lobbying efforts for the 9/11 James Zadroga Health and 12

Compensation Act. It is due to the efforts of the 13
veterans of 9/11, some who are here today, some who are 14

too sick to attend, and some who have suffered and died 15

because of their 9/11 service, because of them and the 16

Congressional delegates who heeded their cries

-- that's 17

what brings us all here today. 18

It is my fervent desire to see that there's no more loss 19

because of the 9/11 attacks. I do not want one more 20

survivor or one more responder to die because of what 21

the terrorists did here. 22

Ther efore I urge you, NIOSH, who have been given the 23

sovereign duty to implement this law, to consider the 24

following: 2588 88 First and foremost, help the children. We must do our 1

utmost to bring to bear every resource and remedy to 2

alleviate the suffering of the ch ildren because of their 3

exposure, or their parents' exposure, to the toxins that 4

filled the streets and air of our great city and the 5

surrounding areas. We must do everything possible to 6

care for them. If we don't help our children, what good 7

are we? 8

Ne xt, I applaud

-- I applaud the fact that the Zadroga 9

Act emphasizes the importance of having established, 10

ongoing avenues of communication with all those being 11

monitored and treated at the World Trade Center 12

treatment and monitoring programs. I would like to 13

propose the following model to be used as the primary 14

avenue of communication that will put teeth into this 15

part of the Act. The models are above and beyond

-- 16

these models are above and beyond the steering 17

committee. The steering committees do good work, but 18

their work is primarily administrative in nature. I 19

believe a direct line of communication to the 20

participants is what truly will bring about a patient

21

centered health care model. 22

I recommend the adoption of a community advisory council 23

for eac h Center of Excellence. This council would 24

consist primarily of participants at the respective 2589 89 center. Some of the benefits for the participants would 1

include appreciating being part of the program, listen 2

to and having your opinions valued, understandin g how to 3

be an active participant in their own health care, and 4

recognizing that collaboration with their, our, 5

providers through patient center care leads to better 6

self

- management of chronic conditions

-- uh

- oh, yellow. 7

Okay, the benefits for the health care organization 8

include learning what the priority concerns are for the 9

patients, which may not be what the health organization 10

selects; hearing directly from the consumers, the 11

patients; transforming the culture toward patient

12

centered care

-- it's top

- heavy right now; developing 13

programs and policies that are relevant to the patients' 14

needs. This all will improve customer satisfaction, 15

which leads to stronger patient loyalty and strengthens 16

community relations. 17

The very last thing, for the resear

-- f urther, I would 18

also suggest there be a coalition of these councils and 19

these individual councils would send members to the 20

coalition, and the coalition would have

-- would have an 21

overview of what's happening at all the centers, would 22

strengthen and passi onately promote the things that are 23

working and would swiftly yet thoughtfully address the 24

problems that could come up. We could see them, we can 2590 90 track them. 1

Lastly, please, for the research component of the 2

program, I urge you to adopt something called the 3

community

- based participatory research. It's called 4

CBPR. It's the new thing, the cutting edge in the 5

health care world, and see

-- I

-- two sentences, if I 6

may. May I? Thank you. 7

CBPR is research conducted as an equal partnership 8

between traditio nally

- trained experts and members of the 9

community. The community participates fully

-- fully, 10

fully, fully

-- in all aspects of the research process, 11

including the conception, the design, the analysis and 12

dissemination of the research. This research wil l 13

engage the community as a partner in collaboration with 14

the scientists. And mounting research shows that when 15

this happens, guess what? The research actually 16

produces better results that are more fully embraced by 17
the community. It is a truly win/win approach. 18

I thank you very much. 19

MR. ELLIOTT: Thank you, Barbara, for those comments. 20

Darcia Hemphill? 21

MS. HEMPHILL: Hi. Good morning, everyone. Can you 22

hear me? 23

Okay. Good morning. Can you hear me now? Hi, my name 24

is Darcia

-- oh, hold it. 2591 91 My name is Darcia Hemphill

-- oh, yeah, 'cause I'm too 1

tall. Thanks, better. 2

My name is Darcia Hemphill. I'm here today in behalf of 3
my husband, Milton Hemphill, who was a victim of 9/11 4

and he wasn't a police

-- wasn't from the police 5

department nor from the fire department nor a first 6

responder. He was a worker around the area and also a 7

hero, 'cause he saved a lot of life that day, too. And 8

-- I mean you're talking about someone that was very 9

healthy

-- healthy, physically fit and he's 10

(unintelligible ), doing all kind of things

-- running 11

New York City marathons

-- and was diagnosed like in 12

2005 with sarcoid disease. Having problems now. He was 13

in the ICU three weeks ago for two weeks, and he's

-- 14

his condition is deteriorating and we never asked for 15

help. We didn't know how nor where to go and

-- I mean 16

I'm glad for one person that really, really make me come 17

to this meeting today so I could really approach you to 18

know why is not

-- why this information is not out 19

there? Why is a lot of people not knowing where to go, 20

what to do? And wha

-- he'd been registered with the 21
9/11 registry in 2005 since we start

-- he started 22

symptoms earlier, but we didn't know

-- they couldn't 23

find what was wrong with him, and he was diagnosed after 24

surgery with the dis ease. Right? And why is not people 2592 92 knowing where to go, what to do, or why is not a lot of 1

information out there for us to know what to do? 2

I called Bell e vue Hospital because

-- I mean I'm close 3

to Mount Sinai but I'm not allowed to be there. I don't 4

k now why is only for certain people to only go there or 5

why is only certain group can go there, and why we have 6

to go all the way to Bell e vue Hospital just to get check 7

and wait so many

-- I have to wait till May for him to 8

be seen and he's not good right n ow, you understand what 9

I'm saying? He have an appointment until May. I mean 10

he's deter

-- his condition is very deteriorated right 11

now. 12

He

-- he had acute kidney failure recently, and have 13

other illnesses. So I'm trying to find out what is it, 14

Dr. John , that we could do, where could we go, how could 15

we be part of this because we weren't

-- we didn't 16

approach anyone and we really need the help. And I know 17

a lot of people's out there right now that's got sick

-- 18

got

-- got sick after that, and they proba bly don't even 19

know what to do, like myself, right now. And I got a 20

family, like childrens (sic), and I mean we don't know 21

what to do. 22

Thank you very much. 23

MR. ELLIOTT: Thank you, Darcia. You may want to speak 24

with

-- there's some of the NIOSH represe ntatives here 2593 93 that you might want to speak to

-- and the program 1

folks. You may want to speak with the program folks to 2

find out how to get enrolled. 3

Dr. Margaret Dessau, and then we'll have Bruce Edwards 4

and Mary Fetchet. 5

DR. DESSAU: Good morning, Mr. Elliott, Dr. Howard. My 6

name is Dr. Margaret Dessau. I'm a retired 7

pulmonologist

-- 8

UNIDENTIFIED: (Unintelligible) 9

DR. DESSAU: My name is Dr. Margaret Dessau. I'm a 10

retired pulmonologist affiliated with Columbia 11

University, a native New Yorker. I lived in Tribeca for 12
34 years. I was here on 9/11, facing it, seeing the 13

horrific thing, and then I was right opposite the barge, 14

so I was exposed and the whole neighborhood was exposed 15

for a lot longer than often many of the first 16

responders. Yet there was no outreach, really, at all 17

to the residents, no epidemiological investigation. I 18

only found out about the possibilities through the 19

downtown express, found out about CB

- 1, Catherine 20

Hughes, who got me involved. I volunteered, because of 21

my specialty , with the World Trade Center registry with 22

Dr. Jim Cohen to see if I could help, and discovered 23

through that about the sarcoid connection. 24

Epidemiologic data, which is statistics

-- I'm a 2594 94 scientist; I'm also a humanist

-- it takes years. There 1

are multi

- factorial agents, there are pre

- existing 2

conditions. I worked in compensation for reviews, so 3

I'm familiar with the system. I was in this building 30 4

years ago doing comp reviews, you know, so I understand 5

the difficulty. 6

But I think, just listening to Ms. Hemphill, it

-- it's 7

heart

- wrenching. And when I was in the committee

-- 8

first of all, only 20 percent of those who registered

-- 9

there was never an outreach to the community. Many 10

people didn't know about it, like myself; questionnaires 11

to get a ba seline. When I asked Dr. Cohen why is there 12

no study going on for studying carcinomas of all kinds, 13

particularly respiratory, lung carcinoma, he said well, 14

there was no funding for it. I said don't you thi

-- and 15

also there was no database starting at the time zero. I 16

said "Well, it's not too late." But you know, we just 17

could do what we can do. 18

On a personal note, my husband and I are athletes, very 19

active, marathoners, skiers, everything, and perfectly 20

healthy until

-- my husband was a non

- smoker, and then 21

in January '09 he was diagnosed with stage 4 lung cancer 22

and he died four months later. And I just can't help 23

believe there's a connection. 24

And we learned after World War I about mustard gas, and 2595 95 from World War II after the Nagasaki and Hiroshima 1

e xplosions about all these toxic exposures. We should 2

at least learn from a terrible experience, with our new 3

scientific, technological data handling, we should be 4

able to get some scientific data out of this. I'm 5

sorry... 6

MR. ELLIOTT: Thank you, Dr. De ssau. Bruce Edwards? 7

MR. EDWARDS: I'd like to thank Dr. Howard and Mr. 8

Elliott for holding this meeting for us. It's very 9

important. 10
My name is Bruce Edwards, and I was a 9/11 responder. I 11

worked as an electrician at the Verizon building at 140 12

West Street. I spent the better part of 18 months at 13

Ground Zero, and in 2007

-- late 2007

-- I was diagnosed 14

with stage 4 non

- Hodgkin's lymphoma. I spent the better 15

part of two years battling the disease, and I just feel 16

victimized twice. The first time by the disease itself, 17

and the second time by lack of treatment I was afforded 18

at the medical monitoring systems. 19

They were willing to treat my sinus conditions and the 20

depression and all the other things that were brought on 21

by the disease, but nothin g for that particular disease. 22

And Jim Ryder mentioned that

-- previously that they 23

just show you the door if you have cancer, and I feel 24

very
-- I don't agree with that. 2596 96 All my doctors agree that my

-- my cancer was 9/11

- 1

related, and I would

-- I would hope th at NIOSH would 2

follow that

-- that thinking. 3

On another item , I know it's a very small model, but I

- 4

- I arrived at Ground Zero on September 14th. I was one 5

of eight men in my crew. A nd Bob Ciano, one of my men, 6

he's passed on from cancer and I'm curren tly in 7

remission. So I know it's small, but that's 20 percent 8

of my crew that has been seriously affected by this. 9

And as Mr. Gronan (sic) noted that we're not included in 10

these studies. The cancer just gets pushed aside, and 11

it's really, really affecti ng our lives. 12

I appreciate NIOSH's current efforts, but I hope that 13

they will be expanded for responders like myself and 14

others, and they will include this current criteria. 15

Thank you. 16

MR. ELLIOTT: Thank you, Bruce, for those comments. 17

Mary Fetchet, a nd then Wanda Ortiz, and Diane Stein 18

after that. 19

MS. FETCHET: It's nice to see familiar faces out there 20

in the audience. I wanted to begin by thanking Dr. 21

Howard and Mr. Elliott for the time to speak today, and 22

to be able to pull together this community and listen to 23

their concerns. I think that's just critical. 24

My name's Mary Fetchet and my husband Frank is here with 2597 97 me today. We lost our 24

- year
- old son, Brad, on 9/11 1

and

-- he was on the 89th fl oor of Tower Two, worked for 2

( in discern ible) and Woods and was 24 years old at the 3

time. 4

Just to give you a little background information, Brad

- 5

- Brad had just graduated from college and hadn't

-- 6

hadn't been in

-- in the job that long, but I was at the 7

time working as a clinical social worker in an out

8

pat ient mental health clinic about a half

- hour north of 9

our home in New Canaan, Connecticut. And I used to 10

attend a conference with

-- about victims of crime, and 11

they had hi gh profile cases

-- like the Una bomber's 12

brother was there and some

-- some of the v ictims. 13

But they had this woman that lost her daughter in 14

Oklahoma City speak, and on a large

- screen TV they 15

showed the events of that day unfold, and the video 16

actually ended with her walking through the memorial and 17

talking about that her friend Susan s at here, or her 18

friend Tom sat there, and that they had

-- the nursery 19

was here. And so I was so compelled, not just by the 20

images and the video that day, but by her message that 21

the attacks in Oklahoma City expanded well beyond the 22

families that were dir ectly affected. They had a higher 23

incidence of depression, anxiety, suicide, spousal 24

abuse, job loss, and many other disorders, and it 2598 98 rippled through the broader community. 1

And s o of course this was before Goog le, but I did a lot 2

of research then. You know, I don't know that I thought 3

about it as a terrorist event, but I did think about it 4

-- that this was a community that was impacted by a 5

horrific event and that there were people that had to 6

respond, not just to the loss that was suffered that 7

day, bu t to the devastation within their community. 8
And so the Friday before 9/11 I thought as much as I'd 9

like to work with victims of trauma, it's not going to 10

happen here in Connecticut and I threw the materials 11
out, and then 9/11 happened. So I'm seeing Bar bara sort 12

of nod. You know, many people don't even know that 13

background. 14

But when I started going to the family assistance center 15

I was looking through those lenses and I saw people 16

coming in from around the country and around the world. 17

They were shouti ng out the need for interpreters, you 18

know, of languages I had never heard of. Of course you 19

saw the volunteers and the rescue workers that came to 20

help our families, and I'm learning over the years that 21

many of the people that survived actually responded in 22

setting up and helping with families that were coming in 23

from around the country and around the world. 24

So my journey began there. I started having weekly 2599 99 support groups in my home, you know, and then I opened 1

an office later. The first people that I hired were 2

social workers because I knew that if

-- I could either 3

choose to run the organization or to listen to the 4

stories and help the people that had survived. And it's 5

funny, we're actually going through the process of 6

forming our business plan wit h this busy year ahead with 7

the tenth anniversary, and I pulled out our first 8

brochure, which was an advocacy group providing 9

resources and support to the victims, families, 10

survivors and all those impacted by the terrorist 11

attacks on September 11th. 12

And so what I've seen over the years is this

-- it 13

wasn't just our family. The woman from Oklahoma was 14

exactly right. The people that responded that I met 15

early on at the Taj Mahal

-- you know, I recognized at 16

that point that they probably at some point woul d need 17

psychological help, but I never dreamed that there would 18

be this long list of medical problems that so many 19

people here today that are representing the people that 20

can't be here today are

-- are trying to convey to you 21

the real needs that they have. 22

As an organization we have now three offices in New 23

Jersey, Connecticut and Washington, DC, and we're 24

working with the Pentagon families and survivors. But 25100 100 what I'm seeing first

- hand is people coming forward as 1

the woman spoke today. People

-- women no w that are 2

single parents, they've lost their loved one due to the 3

cancer that their spouse had. 4

We're also seeing women that are living with, and 5

families that are living with, people that have chronic 6

illness. They're having respiratory problems, const ant 7

calls to the hospital, constant doctor visits, problems 8

related to their PTSD, the nightmares that they're 9

having. These families are really ill

- equipped to deal 10

with what they're seeing. 11

We're having survivors, many of them who are not 12

registered, t hat either lived or worked in the area. 13

And for many of them, their coping skill is to move 14

away. You know, I think if they're

-- they're not faced 15

with being reminded of the event up in Maine. But the 16

problems that we're seeing as they're dealing with both 17

psychologists and medical doctors that have no clue 18
about the impact of 9/11. 19

So I do think that there's going to be, you know, 20

intergenerational issues. There is going to be this 21

rippling effect, not just today but in the many years 22

and the generat ions to come. I think there's going to 23

be the need for people to have treatment that

-- that 24

we're thinking

-- listening to what their needs are and 25101 101 integrating that into our programs. 1

We have to give them information. We have to give them 2

support, and we have to give them services in our own 3

communities. I think that's really a unique way that 4

we've dealt with our families. You can't expect 5

somebody living in Maine to have to come to the New York 6

area for treatment. We have to educate service 7

provide rs outside the area. 8

And I think we have to look at

-- I think my fear with 9

the tenth anniversary, the attention of the tenth 10

anniversary, we're going to see and have to deal with 11

many more people that are coming forward for the first 12

time. And so I thin k it's unpredictable the number of 13

people that unfortunately this event has impacted. 14

And so I think that you've seen today, not just hearing 15

the stories, you know who the organizations are that are 16

providing support, and I would just ask you, rather than 17

reinventing the wheel, support our organizations, many 18

of them who are in the room today, that understand this 19

population. Trust is so huge, so I think that you have 20

to really try to help support the existing organizations 21

that have worked with these pop ulations from the very 22

beginning. And we have to, as organizations, then be 23

able to inform the Centers of Excellence that are 24

providing the concrete support. 25102 102 I can say on behalf of all the families, we've been 1

notified five times of our son's remains and

-- I'm 2

sorry
-- but I remember when we were notified for the 3

first time in November of 2001. And I remember going to 4

St. Paul's and bringing a card and my roses, 'cause it 5

was the only gesture that I could make to thank the 6

people that came

-- that left their own families, you 7

know, at a time that we were trying to bring our 8

families together, and the bravery and heartwarming 9

response that these rescue workers and the people that 10

survived

-- you know, I can never thank them enough. 11

And I just pray that y ou will help them through this 12

difficult time, and that you will listen to what they 13

say. And you know, I think it's very short

- sighted if 14

we can't help the people that were so brave, that not 15

just helped our families but helped our country. 16

So thank you

. 17

MR. ELLIOTT: Thank you, Mary. Wanda Ortiz? Then we'll 18

hear from Diane Stein. 19

MS. ORTIZ: Hello, good mo rning. My name's Wanda Ortiz. 20

I do not speak English very good, but I try. Everybody 21

here, I have the same thing problem. Everybody is sick 22

bec ause I working in the Ground Zero. I am

-- I working 23

in the area Ground Zero, I working cleaning office in 24

the building, the company Tanco*. Now I'm very sick. I 25103 103 have the 75 percent of my body not working good. I have 1

the asthma, fibromyalgia, GERDs, a nd the presumed 2

neurological problems. Every day I need nine different 3

medicines. When they

-- I eat, I need the medicine for 4

my stomach. My life is no good in this moment. I have 5

two small kid. Sometime never I go again can I go to 6

the tree because I have the lot of problem in my body, 7

in my leg. That's why the doctor say this is fibro

-- 8

now I have

-- I have (unintelligible)

-- my asthma. 9

Never get out

-- out of my house on the medicine. 10

Everybody come back when they forgot the cellular. Me 11

come b ack when I forgot the medicines. Now is very hard 12

because '97

-- 1997 I had two different job. Now in 13

2001 October and December, never

-- is very different 14

because in 2002 (unintelligible) working is very 15

(unintelligible). I go to the emergency room. M y 16

asthma don't allow long

- distant working because that's

- 17

- now
-- it's different, everything. 18

Okay, thank you. 19

MR. ELLIOTT: Thank you, Wanda, for those comments. 20

Diane Stein, and then we'll hear from William Gleason, 21

followed by Troy Rosasco. 22

MS. STE IN: Hi, can

-- can anybody hear

-- can everybody 23

hear me? 24

Okay. My name is Diane Stein, and I'm a resident. I 25104 104 live in Independence Plaza, which is a large apartment 1

complex, about 3,000 or so tenants, and it's located 2

around six blocks from Ground Zero . And it was also

-- 3

we were right next to where they were bringing the 4

debris removal barges after

-- you know, remov

-- after 5

9/11, for months and months afterward. 6

And this past Saturday I attended two funerals for 7

people in the community wh o both

-- e ach died of cancer. 8

One lived in Independence Plaza. She was only 62, which 9

is not all that old. And the other gentleman lived 10

right across on 125 Cedar Street, which is right next to 11

-- their building was like blown away from

-- you know, 12

from all the d ebris and he had

-- he was diagnosed

-- he 13

had pancreatic cancer, which originally started with I 14

think feelings of GERD and wasn't diagnosed as quickly 15

as it might have

-- might have been. 16

And we'll never know if these were

-- if these incidents 17

were 9/1 1 related, and that's one of the problems is, 18

you know, hearing a lot of anecdotal reports from 19

neighbors, but there's not a lot of

-- there's no real

- 20

- I don't think there's a really great mechanism in 21

place right now for connecting the dots

-- excuse me

. 22

A number of my neighbors are not in

-- on any of the 23

databases. Many people in the area have not registered, 24

are not included in the World Trade Center health 25105 105 registry. And also a number of people

-- people who 1

have been reporting sick, they're not go ing

-- they 2

haven't gone to the centers

-- World Trade Center 3

environmental health centers. And some of them

-- they 4

say oh, they want to

-- they have their own doctors, 5

their own pulmonologist s . So meanwhile, you know, 6

there's not a lot of

-- not a lot of pulling together of 7

the data. 8

I mean yesterday I was talking to somebody who was 9

telling me oh, his

-- his asthma has returned. He 10

hadn't had an

-- asthma since childhood and it's 11

returned with a vengeance, and his pulmonologist, who's 12

located downtow n, was telling

-- was telling him that he 13

did see a spike in

-- in pulmonary, you know, problems 14

with people who are living down there. 15

But we

-- we
-- so we just need a better way to reach 16

out and communicate and monitor and educate and outreach 17

to the c ommunity about what's going on and communication 18

between the medical professionals. 19

And I also wanted to add

-- I think somebody had 20

mentioned before and I wanted to reiterate a concern 21

that the NIOSH administrative outsourcing will take away 22

funds availa ble for treatment and the research and 23

medication that's badly needed by people. 24

And finally I want to just express my appreciation for 25106 106 Mr. Elliott and Dr. Howard for holding this hearing. 1

And I'm very

-- you know, very grateful for the efforts 2

of everyb ody who's been involved in

-- in shedding light 3

on this environmental and other issues related to 9/11, 4

and passing the Zadroga Bill. I want to thank Dr. 5

Howard, who's

-- Dr. John Howard, who's been there with 6

us from the beginning, and who's also listene d to the 7

concerns of the community and

-- and John Feal, the 8

FealGood Foundation, and John Stewart

-- all the Johns

- 9

- 9/11 Environmental Action Community Board One, 10

Representative Carolyn Maloney, Senator Schumer and 11

Senator

-- and Senator Kirsten Gillibr and, who worked 12

tirelessly to get this

-- the Zadroga Bill passed. And 13

finally

-- and I'm sure I've probably left out people

-- 14

it's like the academy awards

-- but I want to thank 15

Representative Gerald Nadler, who's also been with us 16

and listened to the c ommunity and

-- and urged for the 17

passing of this

-- bills from the beginning. 18

So thank you very much. 19

MR. ELLIOTT: Thank you, Diane. William Gleason? Then 20

we'll have Troy Rosasco and the Reverend Terry Lee. 21

MR. GLEASON: Crib notes, helps. My name is William 22

Gleason. I'm an FDNY EMS lieutenant. I have lung 23

disease. I've lost 49 percent use of my lungs thanks to 24
9/11. I have GERD. I have been operated on and had 25107 107 surgical procedures more than 20 times post

- 9/11. And 1

my life is only about 25 perc ent of what it was prior to 2

9/11. 3

I still would have gone, even knowing. We would have 4

used a little bit better caution. My job was to save 5

lives. 6

I lost 141 friends on that day, and I've lost many more 7

post

- 9/11. I sent people to Ground Zero to work. I 8

supervised people there. I've watched them get sick and 9

I've watched them die. 10

We have a moral obligation to help the rescuers. We 11

also have a moral obligation to help the residents down 12

there who were exposed. Worker's Compensation is a 13

short

- term , not a long

- term, health care program. And 14

unfortunately, the rescuers are trapped in that system. 15

The disease and mortality tracking, the Centers of 16

Excellence or the City Department of Health needs to 17

take the lead. If you go to CDC, New York State a nd 18

even the City Medical Examiner's web site, all three 19

have different statistical numbers. No one is on the 20

same page there. 21

The Centers of Excellence need to share information in 22

health care and trends that will better produce patient 23

outcomes. For th e established World Trade Center 24

rescuers who participate with a Center of Excellence, I 25108 108 recommend that an insurance program be instituted to 1

cover all of their health care needs. Health care would 2

be 100 percent coverage with no deductible. This would 3

a ddress the issues of reporting medical problems and 4

treatment to the Centers of Excellence, and also resolve 5

conflicts between Worker's Compensation and their health 6

insurance that can cause unnecessary patient care 7

delays. 8

Our health problems sometimes b lur the lines between 9

what is 9/11

- related and what is not. The money 10

normally spent by the employers and the government for 11

the health care and the Worker's Comp can be used as a 12

source of funding for this insurance. The program could 13

be administered by an agency such as Medicare, that 14

already has the resources established to help keep costs 15

down. 16

We need help. Studies and research are important. 17

Unrestricted access to health care will save lives. 18

It's a matter of honor. 19

I do this because I feel I h ave to. The best patient 20

advocate is a patient, and I'm a patient. So I'm asking 21

you
-- I'm actually begging you, please help us. I'm 22

watching friends die. I sent them there. 23

Thank you. 24

MR. ELLIOTT: Thank you, William. Troy Rosasco, and 25109 109 then Revere nd Terry Lee. 1

MR. ROSASCO: Thank you. First I'd like to thank Dr. 2

Howard and Mr. Elliott for having this public meeting. 3

It's very helpful to all of us. 4

Secondly I'd like to thank all those people in the room 5

who were so important. I don't think any of us would be 6

here today without those who pushed so hard for the 7

Zadroga Act, especially the FealGood Foundation, so I 8

thank you all. 9

I want to be short today and re

- emphasize a couple of 10

themes I've heard already this morning. And those 11

themes are as follows: There are two particular areas 12

of illness that I think are not being treated correctly 13

here. Let's take for

-- first, cancer. It's absolutely 14

imperative that cancer be made part of the NIOSH 15

program. We all know that in the rush of the lame du ck 16

session we weren't able to get every single detail of 17

the Zadroga Bill on there that we would have liked. Now 18

it's up to an administrative agency, of which you are 19

the people who will implement the Zadroga Act, and now 20

it's up to you to implement it co rrectly and to do the 21

right thing. And the only way you can do that is to 22

include cancer, and the cancers we've been talking 23

about. 24

I can't understand how the federal government would not 25110 110 include cancer as part of this program when so many 1

other governme ntal agencies have already done so. I won 2

my first nasopharyngeal cancer case for a Verizon worker 3

back in 2003 through the New York Worker's Compensation 4

board. I had an NYPD officer in my office yesterday who 5

is out on the WTC presumption bill for colo n cancer. 6

Now if that's good enough for other governmental 7

agencies, it should be good enough for the federal 8

government. And there is absolutely no reason why these 9

cancers that we know can come about from the toxins that 10

everybody knows were cancerous down there should not be 11

covered. 12

In addition, there's not a client that doesn't come into 13

my office who does not include, as part of their 14

illnesses, post

- traumatic stress disorder. Whether or 15

not they've been treated for it or not is a different 16

story. As we all know, sometimes it's hard to bring 17

those who are suffering from post

- traumatic stress 18

disorder to treatment. But nevertheless, that outreach 19

has to be done for those people with post

- traumatic 20

stress disorder. We know enough. We don't need a ny 21

more research on post

- traumatic stress disorder. It 22

goes back to World War I when they called it shell 23

shock. A hundred years of research is out there. Do 24
not make the first responders and victims of 9/11 wait 25111 111 for years and years and years of researc h to get them 1

the help they need today. 2

Do the right thing. Take the leap of faith. It doesn't 3

take rocket science to sit there and understand that 4

there's a causality here between those people who were 5

perfectly healthy prior to being down at Ground Ze ro, 6

fresh kills, various and sundry other places along the 7

debris route, and then got seriously sick the way they 8

are. You need to do the right thing. You're the 9

administrative agency that can do the right thing. We 10

have the law now. Please do so. 11

I s ay that in all due respect. I know your intentions 12

are absolutely correct, but we cannot sit by and wait 13

for research studies and to study it forever while 14

people die in front of us. 15

Thank you. 16

MR. ELLIOTT: Thank you, Troy. Now we have Reverend 17

Terry Lee, and then we have four more folks who have 18

signed up. And so our plan is to go ahead and hear 19

those four folks, since they may have been here for a 20

while, before we take a break for lunch. And we may 21

only take a short break for lunch. 22

So Dr. Lee

-- or Reverend Lee. 23

REV. LEE: Thank you. Good afternoon. My name is 24

Reverend Terry Lee. I am the pastor of the Byways and 25112 112 Hedges Youth for Christ Ministry located in Brooklyn, 1

New York, migrated in this country 1989, couldn't find a 2

job. I began to volu nteer in the community. On 9/11 I 3

was serving as a clergy liaison with the NYPD in 4
Brooklyn South. But on the day of 9/11, seeing all 5

these police officers responding to Ground Zero, I cried 6

out to God and I said what can we do? I rushed down to 7

the pre cinct. They said "Reverend, please pray." We 8

began to offer counseling to the local precincts and we 9

were called also by the Mayor office OEM, Office of 10

Emergency Management, to sign up into the program as a 11

clergy crisis responders. 12

And from then we be gan to go down to Ground Zero to 13

volunteer our time. I spent days, nights, weeks, months 14

at Ground Zero as a immigrant volunteering my time. I 15

worked in the morgue blessing the body parts. I worked 16

in the piles searching with rescuers. I've seen 17

hundre ds and hundreds of clergy, a rabbi, people from

-- 18

priests

-- from the faith

- based community, immigrants 19

who responded. 20

Now in Brooklyn there is no type of outreach in 21

Brooklyn. Nobody knows where to go and who to go to. I 22

thank God for the FealGood Fou ndation. And when I heard 23

about them we all went to Washington, D.C. and stand for 24

this bill to be passed. There is no outreach in the 25113 113 community. We need to know why, and how can we help. 1

There are people out there that are dying. Many people 2

from the immigrants community, also. We are looking 3

forward for your help and for your support. Let us 4

reach the unreachable. Let us reach out and touch the 5

untouchable. 6

Right now I've been going to Mount Sinai. I develop 7

asthma. My wife complaining every ni ght with her 8

husband. She can't get her proper sleep because I'm 9

wheezing and I'm snoring, I'm turning in my bed. My 10

daughter, she's going through the struggle. 11

We have work to do as immigrants. I love America. 12

America is a place where we can come as immigrants, and 13

from holding the door to owning the building, from 14

packing the bag in the supermarkets to owning the 15

supermarket, from being a delivery man who delivering 16

the food from the restaur ant to owning that restaurant. 17

I want us to continue to work together. 18

We're at war against the enemy. Churchill recognizes 19

that. And Churchill call a group of men together, and 20

Churchill says "The enemy is about to harm us. If we 21

come together, the enemy would have a harder task 22

harming us together. But if we don't come together, the 23

enemy will harm us separately." 24

We want to thank all of you that are in the fight and 25114 114 making sure that we get t he resource that is available. 1

But let us remember, those families that have not been 2

reach, don't know who to go to, who to call. They are 3

dying, and they are waiting on us. Let us reach out and 4

touch. God bless you. 5

Thank you. 6

MR. ELLIOTT: Thank you, Reverend Lee. Now we have 7

Barbara Caporale. 8

MS. CAPORALE: Hi, my name is Barbara Caporale and I'd 9

like to thank you for holding these hearings and

-- and 10

celebrate the passage of this Bill. I am currently 11

doing pediatric outreach for the survivors of the World 12

-- of the World Trade Center environmental center 13

program. Prior to that I was doing outreach for DC

- 37 14

m embers, for municipal workers. And prior to that I did 15
outreach and organizing for the affected/neglected town 16

hall which we held at St. Peter's which forced the City 17

to recognize the fact that health care for

-- for 18

workers and residents needed to be fun ded and the 19

programs needed to be set up to continue to this point 20

now where we have federal funding finally, thank you 21

very much. 22

Prior to that, I was community organizer for Rebuild 23

Spotlight on the Poor Coalition, which was an emergent 24

organization beg un after 9/11 of over 25 community

- based 25115 115 organizations and legal advocacy groups that worked for 1

social, economic and environmental health justice for 2

the monies that were given and the programs that were 3
set up to help New York City recover after 9/11. 4

P rimarily I am a resident and a mother in the original 5

frozen zone located below 14th Street in New York City, 6

which is also the boundary of the LMDC* small business 7

retention grants. 8

Firstly, I request that Dr. John Howard be the 9

administrator of this pro gram as he is most familiar 10

with the programs and the excellence of care, the 11

players and the people, and has come to this city 12

innumerable times to hear from us about our symptoms and 13

about our needs, and has been very responsive and 14

supportive in address ing this on our behalf. And I 15

thank you, Dr. Howard. I hope that happens. 16

Secondly, I hope that this bill helps

-- that

-- that 17

all the different administrative details in this bill 18

really respects the existing programs and how they are 19

being run, the m edical directors and the administrators 20

of it, and that they don't get tied down in lots of 21

minutiae and paperwork that take them away from the main 22

-- the main

-- the main mission, which is to provide 23

treatment to those who are impacted and

-- and need 24

th at. 25116 116 I don't know if I

-- I mentioned that I was also 1

community

- based participatory research outreach liaison 2

during the World Trade Center expert technical panel 3

hearings for community and labor, which allowed the 4

rescue and recovery workers and the

-- th e community 5

workers and residents to express their health impacts. 6

And unfortunately that panel process was ended 7

prematurely by the USEPA before it fulfilled its mission 8
to determine the extent of health impacts from 9/11, 9

both geographically and symptom atically, and also to 10

establish a proper cleanup protocol which would have 11

alleviated a lot of our problems of

-- of

-- of being

-- 12

our symptoms being reactivated and re

- exposed during 13

this whole demolition, construction, rebuilding process. 14

Regarding the outreach that is under this, I hope that 15

you will respect the Centers of Excellence and their 16

community advisory committees, and the people that have 17

been in place, who know the populations, who are 18

familiar with the needs

-- yet unmet

-- and not just 19

iss ue a general RFP to anyone who has the ability or 20

staffing to be able to write a grant to do outreach. 21

And thirdly

-- I mean lastly, I will tell you that I

-- 22

I coined the phrase "affected / neglected", and I'm very 23

concerned that I still, according to this bill, am part 24

of the population that is still affected and neglected. 25117 117 This bill is written with a boundary line at Houston 1

Street. The original frozen zone was 14th Street. My 2

child was in a day care, and I will submit into the 3

record the New York Acade my of Medicine's pediatric day 4
care study one year after 9/11, which shows in her 5

school alone 32.3 percent mutually exclusive statistics 6

of children who had never been diagnosed with asthma or 7

who had some kind of respiratory symptom one year later 8

in a p opulation that nationally would be seven percent. 9

The entire study of all the day cares shows 41 percent 10

mutually exclusive information

-- I'll give you that. 11

I also want to show you the Department of Health's 12

clinical guidelines for childrens (sic) and a dolescents 13

exposed to World Trade Center disaster. I'm very 14

concerned about the children in this area between 15

Houston Street and 14th Street. That is the catchment 16

that has been recognized by the existing World Trade 17

Center environmental health center pr ogram. It is the 18

catchment that was reached out to in a letter from the 19

Department of Education, the Department of Health and 20

New York City health and hospitals population. 21

Unfortunately, this letter

-- the mailing with the DoE 22

did not get to many househ olds that

-- that have these 23

populations. And our pediatric outreach just went into 24

full effect at this, you know, late fall. 25118 118 So I am concerned about this 60

- day waiting period and 1

I'd like to know, does that mean for people who are not 2

currently patient s in these programs as the Centers of 3

Excellence, or does that mean people who do not fit into 4

one of the criterias (sic) that are listed as, you know, 5

the area of

-- you know, all the different qualifying 6

criteria, because I think that the population betw een 7

Houston Street and 14th Street

-- first of all, 60 days 8

is too long for anybody to wait for medical care. 9

Secondly, if it's only for that

-- you know, for anyone 10

outside of those qualifiers, I'm asking you to take into 11

consideration the way that the i ntakes do at the Center 12

of Excellence, and they look for a symptom and they look 13

for exposure, and they understand the populations. 14

These populations are in the data that shows that 15

survivors and responders have similar symptoms, and 16

they've already been included in studies but the 17

populations have not been outreached to. I'm very 18

concerned about our children. I'm also concerned about 19

the children of our first responders and others who

-- 20

who lost a loved one during

-- after 9/11. The mental 21

health qual ifications for pediatric program never set a 22

geographic boundary. You can see how upset our 23

responders are and the fight that they've been through, 24

and you can know that their children have mental health 25119 119 impacts, as do the residents in the survivors' prog ram, 1

their children, especially after we had to fight for so 2

many years for recognition. So I'm hoping that this 60

- 3

day and the

-- and the zone is

-- is made an exception 4

because it's

-- it's just too long a period and that we 5

need to include the area tha t had been recognized in the 6

original federal boundaries, which is Houston to 14th 7

Street. 8

Thank you very much. 9

MR. ELLIOTT: Thank you, Barbara, for those comments. 10

Robert A. Grachow? 11

UNIDENTIFIED: Grochow. 12

MR. ELLIOTT: Grochow. 13

MR. GROCHOW: Good morning. I'd like to thank Mr. 14

Elliott and Dr. Howard for allowing us to speak here 15

today and share with you certain information that we may 16

have that's relevant to you. 17

My name is Robert Grochow. I am an attorney. Our 18

office, along with my partner, G reg Canata*, has been 19

honored to serve as one of the plaintiffs' lead counsel 20

in the federal litigation, and we are here to just 21

briefly touch upon what we feel should be the inter

22

relationship between the health aspect of the bill and 23

the victim compensat ion aspect of the bill. And I know 24

that today there are many, many injured people in the 25120 120 audience, victims of 9/11. I see several of my clients 1

here. I'm honored to represent Alex Sanchez, who I 2

believe spoke earlier, and Manny Cheko for many years. 3

An d the

-- before I get into the interrelationship, I 4

just want to share two short conversations we've had 5

over the years with some of the directors of the 6

programs at Mount Sinai. One came after I had the 7

opportunity to speak to some of their patients, and I 8

asked the doctor

-- and this goes back many years

-- 9

what can you tell us statistically

-- and this was 10

probably back in '04 or '05 that I had this conversation 11

-- about the injuries that we haven't seen yet? And 12

quite frankly, cancer wasn't really on the radar screen 13

as early as '03 and '04 for

-- for most people. As you 14

know, cancers generally have a

-- a time gap before 15

they're actually going to start showing up, sometimes 16

ten years, sometimes 12 years, sometimes 15, 18 years. 17

And I said to the doc tor, what can you compare this to? 18

And she said "Well, we were involved, to an extent, with 19

the telephone company"

-- it's now called Verizon; it 20

wasn't in those years, I believe it was in the '70s or 21

'80s when the entire building went up in flames, and 22

ma ny, many people were injured in that building. And 23

toxins, some of which are the same toxins that leaked 24
into the air following the 9/11 attack, from the 25121 121 interior workings of the telephone company building 1

caused significant damage to their employees. I said 2

"Well, are you going to draw a comparative study between 3

all the people in the phone company building and the 4
9/11 people?" And the answer was a shocking "We'd like 5

to, but most of them are dead." 6

So that is a really, really somber thought to think 7

about. And as I look out into the audience and as I 8

meet with my clients on a daily basis, and as we have 9

said in court, we unfortunately feel that many of our 10

clients are dying a slow and uncomfortable death. And 11

the

-- the inter

- relationship between th e health fund 12

and the victims is

-- this

-- this brings this to light. 13

When the victims' compensation fund aspect of the bill 14

receives its regulations by the special master, or 15

regulators from the Department of Justice in Washington, 16

I would hope and urge that the medical community play an 17

integral role in association with the federal 18

regulators, and not stand back. And that you give them 19

guidance as to the manner in which they should formulate 20

what injuries should be included. For my money, it 21

should be an open door. All injuries

-- yes, obviously 22

subject to some causality, but all injuries should be 23

the first step. They should not come out with a menu 24

and say you either fit into this menu or you don't fit 25122 122 into this menu. Because if you do, the fear t hat has 1

been echoed by virtually everybody in this room is 2

what's going to happen to the cancers? So if the 3

medical community and the health aspect of the bill does 4

not recognize certain injuries such as cancers

-- I mean 5

the asthmas are almost a given, I assume. The COPDs, 6

the RADs, are a given. But if asthma (sic) is going to 7

be the sticking point, then let the medical community 8

come forward and educate the federal legislators. And 9

if you educate them only based upon the scientific data 10

that is availa ble today, we fear that you will be 11

leaving out those cancers that the medical community has 12

not yet actually formally recognized as being causally 13

related to the World Trade Center because it takes so 14

many years for that to happen. And by the time that 15

h appens, the fund will be closed. The health benefits 16

may be shut down. We don't know what the

-- Washington 17

is going to do in the future. 18

So I urge that there be this open communication and 19

influence by the health portion of the Act on the 20

victims' comp ensation portion of the Act. 21

Thank you for your time. Thank you. 22

MR. ELLIOTT: Thank you for those comments, Robert. 23

Mike Kenny. I think I pronounced that one right. 24

MR. KENNY: Good afternoon. Thank you for having me 25123 123 here, Mr. (sic) Howard, and to the good doctor. 1

I'll tell you a little bit about myself. Forty

- nine 2

years ago I came into thi s world kicking and screaming. 3

I hope to go out that way, just better be with my boots 4

on. Today is my birthday. 5

(Applause) 6

On September 10th I was a jaded N ew Yorker. I was 7

working on Rikers Island. After the towers came dow n I 8

started loading scout packs, sending emergency equipment 9

down to the site. I worked for the Department of Design 10

and Construction. I spent seven months at the site, 11

overseeing the site and the cleanup, rescue and 12

recovery. 13

Today I'm a vice president in Local 375. We have over 14

7,000 members, and many of our members, working for 15

different agencies

-- Department of Design and 16

Construction, New York City Transit Authority, 17

Department of Transportation, Department of Buildings, 18

Department of Environmental Protection, and Department 19

of Health

-- were down at the site. Some of those 20

members have lost kidneys, testicles, lumps in their 21

throats, lot of illnesses that's not on the chart. 22

I t was an honor for me to go down to the site. I never 23

expected I would ever be in a location like that and 24

doing the job I was doing. We heard the doctor before 25124 124 speaking about mustard gas. One night when I was down 1

there, it was a Sunday night, we had c hillers that were 2

covered

-- were packed with freon that went on fire. 3

That's mustard gas. That is mustard gas. I had a 4

battalion chief yelling and screaming at me on a Sunday 5

night to find some argon gas 'cause argon gas will 6

smother out and stop a fre on fire. Very hard to find, 7

Sunday night, argon gas. We ended up covering it with 8

sand, putting it out. But that fire was right there. 9

Mayor Giuliani said the fires were out in January. Man, 10

I seen every color smoke coming out of that hole. I 11

seen st eel being lifted that was melted and bending. 12

Those fires were going a lot longer than January. 13

By winter 2002 I could not get out of bed. I didn't 14

care about Christmas. I d idn't care about the holidays. 15

I was a mess. I had actually left the site Apri l 13, 16

2002 with a broken collarbone and not the man I was when 17

I went down there. I'd gone back to work in September 18

because I was a mess, but I needed to get back to work. 19

I needed to climb out of that hole. 20

I did every single thing I could do to try to get 21

healthy. I went to the New York detox, spent hundreds 22

of days there detoxing. Serving those who serve, I took 23

those pills. Mount Vincent's World Trade Center health 24

center, I went to. Red Cross, I went to

-- life net 25125 125 counseling, I went to it. I d id everything. 1

Okay, I'd like to tell you some of my illnesses that are 2

not on this list. I have sores all over my body that 3

ooze out nightly. My wife changes the sheets every day. 4

Now I have skin cancer

-- which is coming from these 5

sores, if you ask m e, but I'm not a doctor. 6

I'm a big guy, kidney stones. Kidney stones are 7

painful. Give me that morphine, give it to me 'cause I 8

don't want to feel it. All right? What do they tell 9

you to do? Scream, and catch the stone so it could be 10

examined. What comes back? Non

- organic material. My 11

urologist tells me I'm crazy. How is it getting into my 12

system? Seven months at Ground Zero might have 13

something to do with it. 14

I have a little prepared speech here, bear with me. 15

Thank you for letting me come her e. We urge NIOSH to 16

ensure that there is agreed

- upon, consistent quality of 17

medical care and treatment provided to all participants 18

in the World Trade Center health program. Okay? 19

What we would like to see. The World Trade Center 20

health program needs to be patient

- centered. The visits 21

should be designed in a way that decrease stress and 22

promotes the well

- being of the patient, as much as can 23

be possible during a medical visit. 24

Participants should be treated with dignity and results 25126 126 -- and respect. 1

Fo llow

- up appointments. Some participants require 2

multiple appointments because they need to see their 3

regular doctors as well as specialists. 4

Participants request that multiple appointments be 5

scheduled on the same day, to avoid making multiple 6

trips, sho uld that

-- and this should be accommodated. 7

When follow

- up appointments are required by specialists, 8

the staff should take care of such appointments for, and 9

communicate their necessity to, the participants ASAP. 10

Let us know what's going on. 11

Schedules should be coordinated to best meet the needs 12

of participants. For me, still working with the City of 13

New York, I get 12 sick days a year. I go to the doctor 14

for World Trade Center medical monitoring, that's six 15

right off the bat, guaranteed. I get the f lu, that's 16

another three, and what do I have left? I have nothing 17

in the bank, and my boss doesn't want to hear about it. 18
They well forgot 9/11 ten years after the fact. 19

If participant's medical issue is urgent, a follow

- up 20

appointment should be schedule d without delay. We have 21

to wait months aft

-- after we're told to get an 22

appointment. 23

There has to be enough staff to monitor follow

- up 24

appointments. 25127 127 Once the appointment is set, verbal communication should 1

be made to the participant. I schedule my app ointments 2

six months in advance. I schedule three appointments. 3

When it comes time for me to go to my appointments, I 4

get a cancellation every time for one of the doctors 5

'cause of schedule conflicts. I try to put it all 6

together so that I'm not taking time off from work. 7

I need a referral to go see a specialist, is required 8

for every time I go see that specialist. I've already 9

seen the specialist. Why can't I just schedule and 10

appointment and go back and see the specialist? 11

Once a participant has be en referred by a treating 12

doctor, participant should be able to make follow

- up 13

appointments directly with the specialist. Currently 14

the scheduling of all appointments has to be done 15

through the treating doctor. So it's an overlap that 16

wastes my time. 17

Be dside manner. Our community was involved in an 18

unprecessident (sic) environmental and psychological 19

incident, and we are battling significant physical and 20

emotional conditions. I do better when I ad lib. I 21

hate to read from the scratch. 22

We ask that doc tors and staff demonstrate the 23

appropriate sensitivity and compassion when dealing with 24

our unique community. 25128 128 There should be a benefit coordinator who would be 1

responsible for assisting participants in obtaining the 2

benefits for which they may be eligibl e
-- disability 3

benefits, Worker's Comp benefits, scholarships for the 4

kids maybe. 5

In this way participants do not discover about these 6

benefits after the fact. 7

The last thing is consider PTSD an illness that stands 8

on its own. 9

Now I'd just like to tell you a little story about

-- I 10

was down lower Manhattan the day of the Deutsche Bank 11

fire, and I was with my son. He's 16, so he was 12. He 12

wants to go closer to the fire. I want to run. I don't 13

want to be nowhere near. Street was like a frozen zone. 14

Car was parked in the frozen zone. I couldn't get out 15

of there. I took him over to

-- near 17th, try to spend 16

some time. The smoke, the smell. I was going on a two

17

week vacation down to the beach after that. That first 18

week I was miserable. I couldn' t put it all together. 19

Later on I'm in Chinatown when Air Force One decides to 20

fly over the Empire State Building all the way down to 21

the Statue of Liberty. I swear to God, I thought my 22

world was going to end that day. It took me to then to 23

connect the dots and figure it out, that this is serious 24

stuff that I'm dealing with. And how do you go around

- 25129 129 - when I was raised not to ask for help, but now I 1

realize I need to ask for help. And that's why I'm 2

here, asking for help from you guys. You guys have the 3
power to do it. 9/11 happened tomorrow, I'd be down 4

there, knowing everything that I know now. 5

Got some other little notes here that I just want to 6

look at before... 7

That's pretty much all I've got to say. Thanks so much 8

and I hope you guys really do the right thing. We're on 9

the road to recovery. This menu of options you have, 10

you should treat us like a patient, take care of 11

everything. You know what? My kidney stones are, in my 12

eyes, directly related to my time down at Ground Zero. 13

But to be told at the treatment center "Oh, you've got 14

to go see your own doctor for that." You know what? 15

I'm taking these steroids they're giving me and my bones 16

are getting weak and my bones are starting to break, 17

they should be all treated together. You've go t to look 18

at it as a patient. Get us well. Get us healthy again 19

so that we can be there next time you need us. 20

Thank you. 21

MR. ELLIOTT: Thank you, Mike. Keith, we're going to 22

hold you just a moment, Keith. We've got two others 23

that haven't spoke n . Y ou spoke once, so if you wouldn't 24

mind having a seat. 25130 130 Joel Kupferman, and then Kimberly Flynn. 1

MR. KUPFERMAN: Thank you very much for having these 2

hearings. I'm Joel Kupferman. I'm the executive 3

director of the New York Environmental Law and Justice 4

P roject. I'm the environmental justice committee head 5

of the National Lawyers' Guild. I was the environmental 6
counsel for the firefighters' union after 9/11. And 7

it's

-- I guess this is an emotional moment for me after 8
all I've gone through with 9/11, an d I think the 9

important thing is that we really thank you for letting 10

these people speak. 11

But after two, three weeks and the first five, six 12
months, a lot of the information I got about 9/11

-- 13

besides grabbing the samples there

-- were from my

-- 14

the pho ne calls that came to me after 5:00 o'clock from 15

a lot of City workers and city staff people that were 16

scared to speak out to their bosses, to the Mayor, to 17

everyone else, who were basically told "If you keep on 18

complaining about what you have or what you saw, what 19

you were exposed to, you're going to lose your job." 20

Okay? We've got to remember that. Okay? 21

So when you're doing your science research and trying to 22

figure out what's out there, you have to put it in 23

historical context that the city did not want to hear 24

from these people. The city, up until now, has spent 25131 131 $500 million or so from the captive fund to deny their 1

claims. Okay? The city health department refused to 2

follow the law. We pointed out that under New York 3

State health law, there's so mething called the New York 4

State lung disease registry, and it states (reading) 5

Report of occupational lung disease. Every physician, 6

health facility and clinical laboratory in attendance on 7

a person with clinical evidence of occupational lung 8

disease, a s characterized in Section 22.5 of this Part, 9

shall report such occurrence to the State Commissioner 10

of Health within ten days. Such report shall be on such 11

forms prescribed by the State Commissioner of Health. 12

This was even

-- it had a whole list, and b asically said 13

that people exposed to toxic dusts or toxins, it had to 14

be reported. The worst violator of this was the New 15

York City health department and Health and Hospitals 16

Corporation. Okay? So when you're looking at these 17

figures, you have to point out that it was an under

18

count and why there was an under

- count. 19

I fortunately got down to the site on behalf of a

-- a 20

cop, the union delegate, they got me down, it was 21

concerned about people exposed to

-- and we grabbed 22

samples. And those samples we se nt to two labs, and we 23

found five percent asbestos. And moreover, we found 90 24

percent fiberglass, and that was something that we kept 25132 132 bringing up in the beginning and it was

-- seemed to be 1

ignored. But after a little bit of research we found 2

out that fi berglass is tiny, needle

- like particles, 3

probably causing much of the reported irritation and 4

pain in the eyes and respiratory system. Fibers are 5

usually coated with a thin later of formaldehyde

6

containing resin. Long

- term health damage is also 7

associate d with fiberglass. The national toxicology 8

program lists respirable

- sized glass fibers as 9

reasonably anticipated to cause cancer. And the 10

international agency for research in cancer lists 11

certain other glass fibers as possible carcino

-- 12

carcinogenic to h umans. So we have the fiberglass 13

issue, that I think was basically, then and now, you 14

know, brushed under the rug. 15

Then we just went by DEC reports

-- DEC handed out

-- I 16

wish you could see this

-- a poster that talked about 17

the bad chemicals that people are exposed to. I'll send 18

you
-- okay. It's a poster, and it basically says: PM

19

10 wanted for

-- and this is what the DEC said back then 20

-- description, PM

- 10 is the generic name for 21

particulate matter less than ten microns in diameter. 22

Crime: PM

- 10 can reduce visibility and make it 23

difficult to breathe. It has been linked to cancer and 24

heart attacks. Cause: PM

- 10 comes from burning fuel in 25133 133 power plants, factories, cars and trucks, as well as 1

dust blowing from roadways, fields and construction 2

site s. EPA

-- it's well documented that fires burning 3

at the

-- at 9/11 lasted for weeks and weeks and weeks. 4

I fortunately became the attorney for the firefighters, 5

and I represented a lot of the workers and residents in 6

lower Manhattan. And one of my conc erns, besides the 7

fiberglass and the under

- count in cancer, is your 8

boundary lines; that your boundary lines in the 9

catchment area is arbitrary. One of the places that I 10

was sent to was the cancer house in Brooklyn, in 11

Redhook, dealing with

-- with post

- 9 /11. A lot of these 12

trucks that went down to the

-- to 9/11, carried the 13

World Trade Center dust back into their fire houses. 14

One of the firefighters pointed out to me that the dust 15
from 9/11 didn't just go over

-- let me just

-- can I 16

finish? Okay. D idn't just go over the East River, went 17

under the East River. And the fact that it was carried 18

by trucks through Brooklyn to Freshkill

-- okay? That 19

dust was

-- is so bad and not covered, that firefighters 20

from their fire house had to put fires out in th e truck. 21

The embers were still burning. Those

-- those trucks 22

went to Freshkill. 23

We were contacted by the detectives association, you 24

know, to ask in the beginning why the detectives were 25134 134 not given masks and the FBI agents were. So

-- short 1

three minute s
-- I'm really concerned, after putting up 2

a fight to get information out to all those people out 3

there about the cancer risk and everything else, that 4

just going forward

-- I'm in contact with people down in 5

the Gulf Coast

-- that people are scared to sp eak out. 6

And also speaking to a lot of the firefighters, they 7

were scared to speak out. And also a lot of their

-- I 8

think their illness has come from the angst that they 9

weren't allowed to speak out, and I think that's really, 10

really important for you t o put it, you know, into it. 11

And also that you should really be wide in terms of 12

receiving information, that you shouldn't rely on the 13

people that were paid to tell everyone out there that 14

there was no problem, and then got paid to gather the 15

evidence. A ll right? I think it's really wide and it 16

was really inspiring this morning with someone talking 17

about community

- based information. You have to listen 18

to these people, and you have to make sure your phones 19

are open past 5:00 o'clock to actually hear thes e people 20

that are not scared to speak and told that they're going 21

to lose their jobs or their going to lose their

-- their 22

homes for speaking out. So I urge you to keep this wide 23

open, you know, view. 24

And also to seek all the records, to look at Worker's 25135 135 Comp and look through all those filings that people did. 1

Okay? 2

And also the under counted population 'cause I represent 3

a lot of immigrants, incl

-- including doing cases in 4

this building here. They're scared to speak out to 5

anyone. So you've got to

-- r eally got to go out of 6

your way to make sure that they can speak and that 7

they're protected. 8

So thank you very much. 9

MR. ELLIOTT: Thank you, Joel, for those comments. Now 10

we have Kimberly Flynn, and after Kimberly we'll break 11

for lunch, and then we'll come back to finish up. 12

MS. FLYNN: Can everybody hear me? Close, close, close, 13

okay. 14

I'd like to thank Dr. Howard for all of his years of 15
service to 9/11 survivors and responders, and I'd like 16

to thank NIOSH for the opportunity to testify. 17

I'm Kimberl y Flynn and I serve as community co

- chair of 18

the community advisory committee to the World Trade 19

Center Environmental Health C enter, the WTCEHC. This is 20

the World Trade Center of excellence that serves the 21

residents, students and area workers. Known as t he 22

survivor program in the Zadroga Act, the environmental 23

health center operates at three clin

-- operates at three 24

sites, at Bell e vue, Gouverneur and Elmhurst Hospitals, 25136 136 and currently cares for a patient population totaling 1

more than 5,000. 2

In the weeks a nd months after 9/11, not only were 3

residents, school parents and others left to struggle on 4

their own, to protect themselves and their children from 5

unprecedented toxic exposures, but it is also the case 6

that as people became sick from those exposures the y had 7

no access to accurate environmental health information, 8

effective and timely testing or cleanups, appropriate 9

public health guidance, or proper medical evaluation or 10

care. The negligence of the EPA and other federal, 11

State and local agencies constit utes a massive failure 12

of our government to take the legally

- prescribed actions 13

that would have protected the very people who would come 14

under attack from suffering still more harm from the 15

health hazards released in that attack. 16

The EHC was formed in dir ect response to grassroots 17

activism, outreach and advocacy by community and labor 18

groups, working to address these globally

- denied health 19

impacts to the community. The community brought its 20

unmet h ealth needs to Dr. Joan Reibman at the Bell e vue 21

asthma cli nic, and Bell e vue responded to the community's 22

needs when no one else would. From the beginning the 23

WTCEHC recognized the importance of working closely with 24

the diverse community and labor groups representing the 25137 137 affected neighborhoods as a partnership to ensure that 1

the WTCEHC's 9/11 health services would meet the needs 2

of the population it serves. 3

The WTCEHC rests on the foundation of New York City's 4

municipal hospital system. Patients receive 5

environmental and mental health treatment from an 6

interdisc iplinary, highly skilled team of specialists 7

with established expertise in WTC illness. 8

In addition, and crucially, translation services, 9

benefits counseling and other critical services are 10

offered, enabling patients to access care easily. An 11

expanded ne twork of community, labor and advocacy 12

organizations is now working in partnership with the 13

WTCEHC as its community advisory committee to ensure 14

best fit between the services it provides and the 15

evolving health needs of the diverse affected 16

populations in the community. 17

The overriding goal of this collaborative work between 18

the EHC and the CAC has always been improving health 19

outcomes for the affected lower Manhattan residents, 20

students and area workers. And all regulations should 21

be formulated to strengt hen the EHC as the New York City 22

survivor Center of Excellence under the Act, and to 23

maintain the ease of access to care and the standards of 24

effectiveness the patients currently benefit from at 25138 138 WTCEHC. 1

We understand that NIOSH is considering contracting out 2

a wide range of functions and responsibilities to 3

information technology contractors such as Northrop

4

Grumman, who are on a list approved by the Centers for 5

Disease Control. We would appreciate clarification on 6

which functions and what the rationale i s for 7

outsourcing these functions. When there are scarce 8

resources for the medical program, we ask is this the 9

most effective and appropriate use of government 10

dollars. 11

In addition we are concerned that the outsourcing of key 12

administrative functions may disrupt the patient center 13

delivery of services, the development of a community

-- 14

of community and labor

- based outreach techniques, and 15

the establishment of a data center that operates on a 16

community

- based participatory research model. 17

And I just want t o add a few other concerns. The terror 18

watch list requirement we believe may serve as a 19

potential barrier to care, and I have to say, as 20

somebody who's done a great deal of outreach over the 21

years, that explaining to residents who were harmed 22

because they came under attack by terrorists on 9/11 23

that their names will be given to the Department of 24

Homeland Security so that they can be checked against a 25139 139 terror watch list, and it can be determined that they 1

are not terrorists, is a really, really tall order. I 2

can tell you that the people that I have explained this 3

to thus far were confused, to say the least, and

-- and 4

many of them had an immediate negative response. 5

Also we are concerned that there may be some changes to 6

the enrollment process that will end up posing a barrier 7

to care for the diverse community of survivors served at 8

EHC. 9

On the subject of a survivor data center, we support a 10

survivor data center as an active disease surveillance 11

initiative which is fully staffed and funded, and fully 12

integr ated with the work of EHC. We believe it's 13

essential that we conduct population surveillance for 14

WTC impacts on downtown residents, local workers and 15

students, and we think it's especially critical because 16

the vast majority of the populations currently be ing 17

monitored are adult white male responders. We need to 18

know more about the impacts to women. We need to know 19

more about those exposed as children and seniors. And 20

we need obviously for new emerging conditions to be 21

captured by the data center. 22

Prote ctive public health policy actually rests on an 23

understanding of impacts along the dose response 24

continuum. We need to know how little it takes to cause 25140 140 harm, especially in the earliest years of life and in 1

the womb. 2

Which brings me to the needs of child ren, of those who 3
experienced 9/11 as children. Due to their development, 4

behavior and physiology, children are more susceptible 5
than adults to being harmed by exposure to 9/11

-- to 6

all environmental toxics (sic). It is unacceptable that 7

those who were most vulnerable to harm, both 8

psychological and environmental harm from WTC exposures, 9

have actually been the least studied. 10

The New York City Department of Health and Mental 11

Hygiene estimates that some 30,000 children were living 12

or attending school in l ower Manhattan on 9/11. And 13

though there has been far too little research, a growing 14

number of studies have documented serious and lasting 15

9/11

- related physical and mental health impacts on 16

children and adolescents. In October 2008 DOHMH WTC 17

health regis try found that post

- 9/11 asthma prevalence 18

in children under five years of age who lived or 19

attended school in lower Manhattan was more than twice 20

the already high rates for the northeastern United 21

States. Studies also document age

- related mental health 22

i mpacts for a range of ages, including increased post

23
9/11 alcohol or substance abuse among affected 24

adolescents. 25141 141 There is an overwhelming need for research to fill the 1
gaps in understanding 9/11 health impacts to children 2

and adolescents. And there is an overwhelming need for 3

outreach to this population and their parents. It is 4

essential to track and treat the cohort of people 5

exposed to the World Trade Center disaster as children. 6

Because children have much of their lifetimes ahead of 7

them, it is critic ally important that this population be 8

linked with care and monitored over the long term so the 9

trends and emergent diseases can be recognized, studied 10

and, of foremost importance, treated as quickly as 11

possible. 12

We will be sending you much longer testimo ny in writing. 13

Thank you very much. 14

MR. ELLIOTT: Thank you, Kimberly, for those comments. 15

We now will have a

-- a break of 30 minutes. We'll be 16

back at 1:15. We'll take a short lunch here. 17

For those folks who are on the phone, when we come back 18

from lunch we will entertain comments from the phone 19

participants, and we have one more individual signed up 20

on the sheet here. 21

(Recess taken from 12:50 p.m. to 1:28 p.m.) 22

MR. ELLIOTT: Excuse me, if you'll take your seats we're 23

about ready to restart. We ha ve one sign

- up
-- one 24

individual in the room signed up yet, and then we have 25142 142 individual or individuals on the phone to provide 1

comment, so... 2

(Pause) 3

MR. ELLIOTT: All right, let's

-- let's restart if we 4

can, and Operator, are you on line? Or do we have the 5

folks on the telephone ready to make presentation? 6

THE OPERATOR: Yes, I do. 7

MR. ELLIOTT: We're having trouble hearing you, 8

Operator, so we're

-- 9

THE OPERATOR: Is that better? 10

MR. ELLIOTT: Yes. If you

-- if you have any influence 11

over the volu me, if you could turn it up a little more 12

that would be helpful. 13

THE OPERATOR: I'm up all the way. I'm up all the way. 14

MR. ELLIOTT: Okay. Then we're going to have to have 15

somebody here turn you up because we can't hear the 16

phone, so our

-- our techni cal staff here in the room 17

are working on that. 18

So at this point why don't we go ahead and

-- we have 19

one more individual here in the room, Paul Stein. Paul, 20

would you like to come up front and give your comments, 21

and then we'll go to the phone lines. S o Mr. Stein, and 22

then to the phone. 23

MR. STEIN: Thank you, Mr. Elliott, Dr. Howard. My name 24

is Paul Stein. I'm the health and safety chair emeritus 25143 143 of the New York State Public Employees Federation, 1

Division 199. 2

Is this better? Okay. My

-- my union had many first 3

responders, as well as many workers working in the area 4

of Ground Zero, and a number of them did suffer 5

significant health effects and are

-- are sick and 6

injured at the present time. 7

First of all, I'd like to endorse Dr. John Howard as 8

adm inistrator of the World Trade Center health program, 9

not simply because we know from past experience that 10

he's a skilled administrator and a fine physician, but 11

because he's a compassionate human being and a 12

compassionate physician. And despite the necess ity of 13

talking about all the different diseases and all the 14

coverage that

-- that needs to be

-- be covered in terms 15

of

-- of health care, we're basically talking about 16

human beings. We're talking about human suffering. And 17

Dr. Howard has always shown hi mself to care about the 18

individual, not just about the disease. So we hope that 19

Dr. Howard will be appointed as the administrator. 20

As I sat through the session this morning, it was very 21

heartbreaking to listen to all of the individuals 22

talking about thei r suffering as a result of the public 23

service they rendered, or as a result of living 24

downtown, or as a result of

-- of working downtown. And 25144 144 it was compounded

-- the heartbreaking nature of the 1

testimony was compounded by the fact that people had to 2

come here today and practically beg to be helped. These 3

people deserve

-- you know, people deserve coverage. 4

They're

-- they're hurting. They deserve

-- they 5

deserve coverage. 6

And to my mind, we should absolutely do everything we 7

can within the confines of the laws and the health care 8

system we have, and this hearing is an important part of 9

that process, to expand the comprehensiveness of the 10

coverage of the Zadroga Act through regulations, through 11

administrative action, and ultimately I hope through 12

furthe r legislative action, through amendments and 13

extensions to the bill. 14

But at the same time, to me, there's a certain elephant 15

in the room here that

-- that hasn't been mentioned, and 16

I think it's always worth mentioning when we're talking 17

about health care , and that's the fact that we're 18

fighting over the coverage to a large extent because it 19

involves money, it involves funding. And in these 20

economic times especially, and in these political times, 21

it's very difficult to get

-- get funding for health 22

care c overage. 23

But it should be pointed out that if we had universal 24

single payer health care coverage, along the lines of 25145 145 the Medicare system, perhaps, that we wouldn't have to 1

be fighting about how it's going to get paid for because 2

everyone would be entitled to coverage. That doesn't 3

mean we wouldn't need to be here today. I want to 4

stress that. Because the people who are injured as a 5
result of 9/11 have very special needs. Because of the 6

nature of the illnesses and how they came about, we have 7

needs for Centers of Excellence. We have needs for 8

coordination of medical coverage. We have needs for 9

coordination of data collection. We have needs for 10

coordination of research. And a universal health care 11

system, by itself, would not guarantee any of those 12

th ings. So I want to stress that nothing I'm saying 13

about this larger issue undercuts the need for what we 14

are doing here today. 15

But at the same time, as an activist and as someone very 16

concerned with health care and as someone who 17

previously, in my profes sional career, was concerned 18

with the quality of health care coverage in this

-- in 19

this country, I think it's very important that while we 20

fight for all the things we are fighting for today and 21

to expand

-- to expand coverage and comprehensiveness in 22

the bill, at the same time we need to go forward and 23

fight for true universal health care, which will mean 24

that in the future

-- in the future we will not have to 25146 146 be fighting over the money, who's going to pay for

-- 1

for coverage for particular illnesses when different 2

disasters arise, whether it's terrorism, whether it's a 3

natural disaster, whether it's

-- whether it's let's say 4

an explosion at a chemical plant which can cause all 5

sorts of horrible health effects over a

-- very wide 6

areas. 7

So I'd like to end on that note. What we're doing here 8

is very important. But in order to ensure it in the 9

future, we wouldn't have to work as hard to get coverage 10

for people who are well

- deserving of it, that we need to 11

think about the underlying health care system and wo rk 12

toward universal single

- payer health care. But again, 13

for

-- for situations, for disasters like 9/11, at the 14

same time we have to make sure in the future that we 15

have Centers of Excellence, coordination of medical 16

coverage, coordination of data collect ion, coordination 17

of research, to make sure that the unique aspects and 18

the unique nature of the diseases that arise will be

-- 19

will be properly and

-- and appropriately addressed. 20

Thank you. 21

MR. ELLIOTT: Thank you, Mr. Stein. Now we'll go to 22

those on the phone line, so if the Operator will allow 23

the first person to speak, and that person

-- and 24

anybody thereafter

-- if you would please state your 25147 147 name clearly and if you feel we

-- we would like you to 1

spell it for us, if you would. So please go ahead, 2

Operator. 3

THE OPERATOR: Our first person is Mickie Singleday* 4

Hernandez; your line is open. 5

MS. HERNANDEZ: Hi, can you hear me? 6

MR. ELLIOTT: Yes. Yes, we can hear you. Thank you. 7

MS. HERNANDEZ: My name is Mickie Seigle

- Day* Hernandez, 8

and I'm th e health and safety director for the 9

Communications Workers of America in District 1. On 10

behalf of CWA District 1 , I want to thank NIOSH and Dr. 11

Howard for the opportunity to provide input at today's 12

public meeting. I'm sorry I could not be there in 13

pers on, and I will be submitting detailed comments about 14

the statute to the docket, but I wanted to make a brief 15

statement today. 16

On 9/11 CWA had 13 members who died as a result of the 17

attacks. We also

-- our union represents workers who 18

were responders, as well as area workers in the vicinity 19

of Ground Zero. So all of these programs that we're 20

talking about here affect us. 21

Our CWA members who were responders included 22

telecommunications workers from companies such as 23

Verizon, and their name has been mention ed a couple of 24

times today; AT&T, Lucent

-- well, what was then Lucent, 25148 148 traffic enforcement agents and supervisors from the 1

NYPD, New York City sanitation workers; nurses from the 2

closest hospital, NYU downtown; and news crews from 3

media and broadcasting c ompanies like ABC, NBC and 4

others. Our CWA members in the area affected by the 5

collapse worked for the Port Authority in the towers, 6

additional telecommunications workers, public sector 7

workers for New York City agencies, Guild members who 8

were reporters for The Wall Street Journal and other 9

publication. In other words, we have

-- we represent an 10

extremely diverse group, many of whom are sick and all 11

of whom were, and continue to be, affected by the events 12

of 9/11. 13

So as everybody knows, those members of Congress who 14

were in opposition and fought against the passage of the 15

Zadroga Act repeatedly characterized the Act as an out

16

of

- control slush fund for greedy people wanting to get 17

free health care. Of course nothing could be further 18

from the truth. But in order to get the bill passed, 19

there were many compromises that had to be made to get 20

past these unreasonable and, in my opinion, immoral 21

objections. 22

Our union has been part of the fight to establish a 23

long

- term World Trade Center health care program, a ll 24

these many years before any program existed, and we're 25149 149 thrilled that the Zadroga Act was finally passed. But 1

we're not happy with all of the changes that were made 2

in the bill as part of the necessary negotiations. 3

However, now we must all live with t hese changes and 4

NIOSH is tasked with drafting regulations for the 5

statute's implementation. 6

So as NIOSH interprets the statute and drafts the 7

regulations that will become the standard operating 8

procedures for the program, I'd like to offer some 9

guiding p rinciples. 10

First I would like to implore NIOSH to draft regulations 11

that maintain as much as possible the essence of the 12

current medical program, which is to provide 13

compassionate and specialized health care and other 14

services, like benefits assistance, t o those who were 15
affected by the events of 9/11, provided by Centers of 16

Excellence. And the regulations should improve upon and 17

expand the care offered. 18

I ask that the mandated changes to the program be 19

implemented in ways that do not set up a gauntlet o f new 20

barriers to care, for patients or for the providers 21

providing that care. 22

I ask that the regulations be implemented in a way so 23

that no patient finds themselves losing the care they 24

have been eligible for, have been receiving, and so 25150 150 desperately need

. 1

I ask that the language in the statute for adding new 2

conditions be interpreted broadly, so that the proof 3

needed for adding diseases like cancer and other 4

illnesses is not solely based on published statistical 5

analyses of what is essentially incomplete data, so we 6

are not forced to wait 20 years down the line for an 7

answer that may never come as more and more people 8

become ill and die, and too many people already have. 9

I ask that the regulations maintain the medical programs 10

as patient

- centered program s, and that there be 11

continued and expanded collaboration with patient 12

representatives and patients themselves. 13

I ask that with all the new certifications and reporting 14

requirements that patient confidentiality is maintained. 15

I ask that the data centers be able to continue and 16

expand their important disease surveillance activities, 17

and have the funds to do so. 18

In closing, I ask that we use this opportunity and time 19

to build on and strengthen the current program to 20

provide the best possible care for all t hose affected by 21

9/11. 22

Thank you. 23

MR. ELLIOTT: Thank you, Mickie , for those comments. Do 24

we have anyone else on line that would like to make 25151 151 comment? 1

THE OPERATOR: Yes, we do. We have Steven Petrovich. 2

Your line is open. 3

MR. PETROVICH: Yes, good afternoon, Dr. Howard. I'm 4

sorry, I can't talk very well. I was a responder and 5

chaplain at Ground Zero, and the past year I've been 6

under hospice pallia

-- palliative care, and I'm home

7

bound and I ask doctor to please consider

-- I've been 8

paying out of my pocket every month to be

-- have 9

someone come to help me at home. I'm 59 years old and 10

my whole Workmen's Compensation check must go towards 11

paying someone to help me. And I have been told by my 12

doctors that there's nothing more than can be done for 13

me, and that's why they put me on the palliative care 14

program. And I

-- I'm in Ohio and many of the doctors 15

really do not even know how to treat us here. And I 16

just ask Dr. Howard if you would be so kind, please, to 17

take into consideration us who are hom e
- bound and are 18

very sick, that maybe we could get some kind of

-- more 19

discounted care we could afford 'cause we have to pay 20

out of pocket to get help. And I would hope that

-- 21

there's many other people, I'm sure, in my position 22

also. And I would like t o say thank you to you for all 23

you've done for (unintelligible). God bless everyone. 24

Thank you. 25152 152 MR. ELLIOTT: Thank you, Steven, for those comments, and 1

I believe, if I can, I'd like to just quickly summarize 2

because you come across

-- rather difficult for us to 3

hear, but being a home

- bound individual, you're seeking 4

Dr. Howard's support for additional medical support in 5

home health care. Is that correct? 6

THE OPERATOR: I'm sorry, I just cleared his line. If 7

you'll press Star

- 1 again I'll reopen his l ine. 8

MR. ELLIOTT: Okay. Well, we'll go ahead and go to the 9

next individual on line. 10

THE OPERATOR: I have Steven's line reopened. 11

MR. PETROVICH: Hello? 12

MR. ELLIOTT: Hello, Steven. 13

MR. PETROVICH: Yes, I was just saying that I have to 14

pay out of po cket because I'm just on Social Security 15

and they don't pay or send someone to the house, so I 16

have to pay someone to come and help me in the mornings 17

to get up and to help me with my meals and medicine, so 18

I was just asking if there could be some type of 19

provision for those of us who are

-- 20

MR. ELLIOTT: Thank you. We understand that now. I 21

appreciate you coming back on line to clarify for us. 22

Thank you. 23

MR. PETROVICH: Thank you. 24

MR. ELLIOTT: Next individual on line, Operator? 25153 153 THE OPERATOR: At th is tim e I show no further questions. 1

Once again, if they would like to ask a question or make 2

a comment, please press Star

- 1 on your touchtone 3

telephone. 4

(Pause) 5

MR. ELLIOTT: Is there anyone else in the room here that 6

would like to make comment at this time? 7

UNIDENTIFIED: (I naudible) 8

MR. ELLIOTT: Well, you need to come up to the mic, if 9

you please, because we like to have it on the

-- on the 10

transcript, Susan. Thank you. 11

MS. SIDEL: This last guy that just called, I thought 12

that he should be gettin g 100 percent coverage for World 13

Trade Center

- related illnesses. He shouldn't be paying 14

for it with Social Security. And I thought that like 15

once you're screened

-- see, this is where there's a 16

huge problem with the way that

-- you know, every time 17

you'r e
-- you are
-- like your doctor says that this is 18

World Trade Center

- related, then you have to go to 19

Worker's Comp court and fight to prove that. And that 20

was something that wasn't supposed to be happening, but 21

it is in fact happening. And so this poor guy
-- I 22

would have thought that his medications would not be 23

paid by Social Security. They'd be paid out of

-- he'd 24

be in like the

-- the volunteer fund, like I am, and 25154 154 then they'd be paid for 100 percent. The fact that he's 1

in Ohio, that puts him in th e Tommy Thompson program 2

that is

-- I've not heard good things about. And you 3

know, that's a problem, because I

-- I think this was 4

like a really drastic case of somebody who desperately 5

needs, you know, home care help. And the fact that he's 6

paying out of pocket and doesn't even know that his 7

medications should be paid for 100 percent, and he 8

should be having home care paid for, you know, but 9

that's the disconnect here. 10

Thanks. 11

MR. ELLIOTT: Thank you, Susan. Now back to the on

-- 12

on
- line folks, is the re anyone else that would like to 13

make a comment by telephone? 14

THE OPERATOR: We do have a person; Denise Villamia, 15

your line is open. 16

MS. VILLAMIA: Yes, good afternoon, Dr. Howard and 17

everyone else there. I'm so sorry, I'm just very 18

emotional after he aring the last caller, so I'm going to 19

try to get myself together to get through what I have to 20

say. 21

I want to thank Steven first for his service, and I'm 22

very sorry that you're going through what you're going 23

through, and my heart goes out to you and my prayers 24

will, too. 25155 155 My name is Denise Villamia. I'm in Florida right now so 1

I can't be there personally, but my sister Rhonda spoke 2

earlier. We were both volunteers down at the World 3

Trade Center at Ground Zero. We were citizens who 4

responded to the att ack on the World Trade Center. I 5

volunteered through the Red Cross and then the Salvation 6

Army. 7

Prior to my setting foot at Ground Zero I was a vibrant, 8

healthy, happy and joyful individual. I'm a social 9

worker by profession within the New York City pub lic 10

school system, and currently I'm on an unpaid leave of 11

absence due to my worsening medical conditions. I've 12

traveled several times with the FealGood Foundation to 13

Washington also in order to advocate for the passage of 14

this bill. Subsequent to my ste pping foot at Ground 15

Zero I have developed, in this order, vitiligo, which is 16

a disease of the skin pigmentation; asthma and reactive 17

airway disease; post

- traumatic stress, depression and 18

generalized anxiety disorder; GERD and IBS; moderate 19

obstructive sle ep apnea; fibromyalgia; autoimmune 20

antiphospholipid antibody syndrome, which is a blood 21

disorder; lupus and Hashimoto's Disease, along with 22

chronic fatigue syndrome. 23

In the research that I've reviewed for myself as a lay 24

person, not a doctor, I have seen that for certain 25156 156 vitiligo and fibromyalgia can be triggered by exposures 1

to traumatic events and/or exposures to chemical toxins. 2

I have also read in research that vitiligo, 3

fibromyalgia, lupus, chronic fatigue syndrome and 4

antiphospholipid syndrome along with Hashimoto's Disease 5

all have in common that they are disorders in which the 6

immune system is attacking its own body, or the person's 7

own body. 8

I have been involved at Mount Sinai program since 2003, 9

and it's only recently that they've offered me trea tment 10

for the GERD, the sleep apnea and the asthma, and only 11

because I had to strongly advocate for this and jump up 12

and down to be heard. And right now I'm about to lose 13

my health insurance because of the leave of absence and 14

not being paid, and I eventu ally will have to quit my 15

job. While I'm so grateful for these programs at Mount 16

Sinai and what I am getting, it isn't good enough. It's 17

-- it's not enough just to cover

-- cover the covered 18

treatments or the covered conditions or the identified 19

conditio ns. Any and all immune system and inflammatory 20

conditions should also be evaluated further, and treated 21

through the program and under the new funds. 22

I went to Ground Zero with no thought of the after

23

effects. I should not have to go outside the treatmen t 24

program to be seen by a rheumatologist, a hematologist, 25157 1 57 an endocrinologist on a regular basis. These specialty 1

doctors should be part of the covered treatment 2

specialists that all participants can have access to. 3

I just want to say that the person that I was before 4
9/11 no longer exists. I have had to learn to live with 5

this new chronically ill person that I've become, and I 6

just want to be able to enjoy my life again as best I 7

can. Please, Dr. Howard, I beg of you to help me and 8

the participants do t his, all responders. Please help 9

all of us and treat us for all our symptoms. 10

Thank you. 11

MR. ELLIOTT: Thank you for those comments, Denise. Are 12

there any more people on the line that would like to 13

give comment? 14

THE OPERATOR: Once again, to make a co mment, please 15

press Star

- 1 on your touchtone phone. 16

(Pause) 17

At this time there are no comment e rs on the phone. 18

MR. ELLIOTT: Anyone else in the room that would like to 19

provide comment today? 20

If not, we're going to wait around for 15, 20 minutes, 21

and if you want to come up and talk to Dr. Howard or 22

myself or some of the program representatives, that 23

might be a good thing to do at this time, so

-- one last 24

call for any comments in the room or on the line. 25158 158 THE OPERATOR: Once again, that is Star

- 1 on your 1

touchtone phone. 2

(Pause) 3

MR. ELLIOTT: All right, we'll check back with the folks 4

-- with the operator on line in about five to ten 5

minutes to see if anybody else has dialed in and wants 6

to comment, and we'll wait around here in the room and 7

if anybody wants to comment, please come up and ask and 8

we'll put you on the mic. Thank you. 9

(Pause) 10

MR. ELLIOTT: Any phone comments or in the room 11

comments, for the record? We'll stay around after this, 12

but we're going to close down the phone line and the 13

trans cription here in a moment if we don't have any 14

further comment e rs. 15

THE OPERATOR: Once again, that is Star

- 1 on your 16

touchtone phone. 17

(Pause) 18

MR. ELLIOTT: Okay, if we have a person on line that 19

likes to comment, let's please hear those comments. Do 20

we have one more person on line that wanted to comment? 21

THE OPERATOR: No, sir, no more. 22

MR. ELLIOTT: No? Okay, we have one individual in the 23

room coming forward to make comment. 24

Please state your name for the record, if you please. 25159 159 MS. ZUNIGA: Hi, my name is Marina Zuniga. I used to 1

work in the 9/11 for six months all around and we don't 2

has protection when we're going to clean because 3

everybody say that nothin g happen, everything was okay. 4

And I know a lot of people work with me, about 300, with 5

my group, and everybody's very sick. I used to have 6

cancer before. I have asthma, reflux, my eyes, pain in 7

my bones, and I don't need the

-- they say that we are

- 8

- has to treat me yes only for five years more, and I 9

don't think so that is good for everybod y because 10

everybody's very, very sick. Some people that I know, 11

they die by cancer. They are very sick. They can't 12

come today because they are very bad condition, and I 13

would like to tell to somebody help us, because we need 14

help. Believe me, we don't have tomorrow, we don't 15

know. Everybody's difference

-- different kind of 16

sickness, every day different, everybody's different and 17

sick. And I went to the Bell e vue Hospital. I went to 18

the treatment. They gave me lot of pills. They gave me 19

lot of medic ine, but is n ot enough. I don't feel good. 20

Every day I feel very, very bad, mental problems, and I 21

don't know what can I

-- I guess I

-- each day I say 22

thanks God for the (unintelligible) that they gave me 23

because I'm not feel good. And it's a lot of peo ple is 24

like the same like me. They can't come to over here. 25160 160 They

-- someone is outside because they have

-- scared 1

to come and sit in here because they don't have papers 2

and I'm feel very sad for them. 3

Thank you. 4

MR. ELLIOTT: Thank yo u, Marina , for th ose comments. I 5

appreciate you coming up at the last hour here. 6

Any further comments from those in the room? 7

(No responses) 8

We're going to wait another five minutes. We'll see. 9

(Pause) 10

MR. ELLIOTT: I believe we have one more caller on line 11

who'd li ke to comment, so if we could hear that caller 12

now
-- and if there's anyone else in the room that would 13

like to identify themselves as wishing to give a 14

comment, please do so. 15

Operator, if we could have the caller on line. 16

UNIDENTIFIED: I'm here, are yo u -- can you hear me? 17

Hello? 18

MR. ELLIOTT: Yes, we can hear you. 19

UNIDENTIFIED: Then

-- well, I'm

-- I'm hoping that 20

maybe by my calling I'll open up some more discussion 21

because I'm one of the shyer people and the most

-- I'm 22

feeling the most intimidat ed about calling 'cause I

-- I 23

hear about all these people that are really, really

-- 24

and are right on the edge of

-- have just gone through 25161 161 so much and

-- 1

MR. ELLIOTT: Could you speak up a little bit more and 2

give your name, if you please? I'm sorry to interrupt 3

you, but we're having a little bit of trouble hearing 4

you so if you could be a little bit more

-- louder and

- 5

- 6

UNIDENTIFIED: Should I start over

-- 7

MR. ELLIOTT:

-- tell us your name. 8

UNIDENTIFIED:

-- or should I just go on? I just

-- I 9

w anted to say that I'm one of the shyer people and 10

feeling one of the

-- I am one of the ones who feels the 11

most insignificant because I haven't

-- my experience, 12
although horrifying for me, 9/11, has just been as bad 13

throughout the whole last ten years. A nd I'm

-- from 14

that moment that it happened until now, I feel so 15

insignificant and so small that why should I bother you 16

with what my problems are. But nonetheless, I'm going 17

to go ahead. It's taken me all this time to have the 18

nerve to call because I do n't feel like I'm one of the 19

forgotten ones, and I know there's lots of people out 20

there that are because I know there are these incredibly 21

substantiated first responders and people that are 22

horribly sick, and that makes me feel like I shouldn't 23

even bothe r, but I am going to bother. 24

I live on Ground Zero and that day 18 windows of mine 25162 162 blew out. I had six feet of rubble in my loft, and I

-- 1

I and my son and my partner, who's no longer here, spent 2

the year and a half

-- it took 18 months to come home 3

afte r that day, digging i n here, trying to find things. 4

And as it turned out, it all got put in storage and then 5

I couldn't afford the storage bill. 6

My situation is ten years later things are falling apart 7

physically. I've been pretty sick. I'm homebound. I 8

couldn't come today. I'm so glad you had some kind of 9

call

-- listening service available. But I think it's 10

very important for people like me, who I don't have the 11

energy to fight anymore

-- I tried and, you know, just 12

tried to stand up for myself and I just got rolled over, 13

run over pretty much by the systems and the process. It 14

was really nobody's fault. It's the process just got so 15

hard. 16

Just trying to find a therapist, you know, they

-- you 17

had to go

-- Red Cross said you had

-- can go to a 18

therap ist, but you've got to go find someone who will 19

take you on and be willing to wait the nine months it 20

took to get paid. So my life has been like that. I 21

have no money. I'm on disability. I'm getting food 22

stamps and meals on wheels

-- thank God there's those 23

services. But I

-- I had a thriving business here in my 24

loft. My windows are on Liberty Street. I'm above a 25163 163 fire station. And there's no hel

-- I go

-- everywhere 1

I've asked for help, they always say "Well, do you have 2

a disease?" Yeah, I've got lots of things wrong with 3

me, including I sleep about 20 minutes a night, but 4

nothing

-- you know, I'm not dying of cancer and I don't 5

ha

-- I have a lot of things that are probably not going 6

to make me live that much longer, but I

-- I have spent 7

months an d months in hospitals for different things, but 8

none of it is substantiated. I even went to the lawyers 9

and

-- about the

-- the bill, and none of it is like, 10

you know, directly substantiated by what I went through 11

9/11. And I

-- I just want to put a voic e in for those 12

of us that haven't made a voice very loud and very 13

clear, and I don't want to take any more time, but I 14

think it's really important that somehow those of us who 15

are more of the silent on es have some

-- get some help. 16

If nothing else, someone to listen to us because that's 17

the biggest problem, just getting someone to hear us. 18

Anyway, I thank you for doing what you've done, and I 19

hope it serves a lot of people. I'm sure it will. It 20

would be nice if something was possible for me because I 21

kno w there has been much

-- I mean I have no money now 22

so even my disability check goes to paying part of my 23

rent, so

-- and I can't go to doctors a lot of times. 24

I'm on Medicaid and Medicare, so I do have that now, but 25164 164 that just came, so I haven't had that

-- you know, I had 1

to wait till I

-- quite a while, after 65, for that to 2

come. So I'm

-- I'm

-- you know, I'm an elder disabled 3

person who needs help. 4

And I'll thank you for the help you've given and I'll 5

say good

- bye. Thank you. 6

MR. ELLIOTT: Thank

- - thank you for that comment. We 7

have one more comment here from somebody in the room, 8

Sta

-- 9

DR. HOWARD: Stan, be

-- go ahead up there. I just was 10

going to deliver some information about the victim's 11

compensation fund for our record so that, if you're 12

interested, I have a phone number and a web site, which 13
I just checked. It's 9/11

-- that's 9

- 1

- 1, just enter 14

the numbers 911 dot fund, f

- u - n
- d, at usdoj dot gov. 15

That's 911.fund@usdoj.gov. And I have a phone number, 16

too; 202

- 616

- 7900. That's 202

- 616

- 7900. We'll put that 17

on our WTC web site on the NIOSH site and our

-- our 18

docket will list that number and web site. So thanks, 19

Stan. Sorry for the interruption. 20

MR. MARK: That's okay. My name is Stanley Mark. I'm 21

an attorney with the Asian

- American Legal Defense and 22

Education Fund. I am one of the cofounders of the 23

Beyond Ground Zero Network that helped initiate and set 24

up, in partnership with Bell e vue Hospital, a clinic that 25165 165 would treat and track survivors, mainly folks from lower 1

Manhattan, and i ncluding Chinatown and lower east side. 2

I'm interested in today in just giving a very brief 3

statement indicating our support for combining the 4

clinical centers with the data centers that are 5

mentioned in the Zadroga Act. We feel that is very 6

critical to do so in order to further studies of people, 7

particularly folks living in the lower east side and 8

Chinatown, that may or may not have included in other 9

studies. However, we will be submitting, at some point 10

later on before the April deadline, comments, ei ther as 11

a individual organization or as part of Beyond Ground 12

Zero Network or part of the community advisory 13

committee. 14

Thank you. 15

MR. ELLIOTT: Thank you, Stan. Anyone else who would 16

like to provide comment today, for the record? 17

(No responses) 18

We en courage you to provide your written comments to the 19

NIOSH docket. Those will be considered and factored 20

into our deliberations, so please use that avenue of 21

communication as well. 22

Anyone else who would like to speak today? 23

(No responses) 24

Anyone on the phone? 25166 166 THE OPERATOR: Once again, on the phone it is Star

- 1 on 1

your touchtone phone. 2

(No responses) 3

At this time there is no one on the phone. 4

MR. ELLIOTT: Thank you, Operator. Do you have any 5

concluding remarks? 6

DR. HOWARD: Well, I think

-- I thin k we've either 7

exhausted you or exhausted us, or maybe both. I want to 8

thank everybody who

-- who participated today. I 9

counted 43 myself, and that really is

-- is great. And 10

I want to especially thank those that

-- that thought 11

about

-- read the statut e, thought about it and

-- and 12

found all the difficult areas, and thank you very much 13

for contributing. I learned a lot and I think everyone 14

from NIOSH that was here today learned a lot. And 15

certainly we have a lot of work to do and we'll be

-- 16

we'll be interested in involving all of you as we go 17

forward. 18

So hopefully this won't be the last of our meetings, and 19

we hope to have others. And thank you very much for 20

taking time out for everyone who came to help us 21

implement this. 22

So safe travels getting ho me, and thank you again. And 23

thank you, Larry. 24

(Meeting concluded at 2:25 p.m.) 25

26167 167 C E R T I F I C A T E 1

STATE OF GEORGIA 2

COUNTY OF FULTON 3

4

I, STEVEN RAY GREEN , being a Certified Merit Court 5

Reporter in and for the State of Georgia at large, hereby 6

certi fy that t he foregoing pages, 1 through 16 6 , 7

constitute, to the best of my ability, a complete and 8

accurate transcription of the proceedings and were 9

accurately reported and transcribed by me or under my 10

direction. 11

I further certify that I am neither rela ted to or 12

counsel to the parties herein nor have any interest in the 13

outcome of the above

- styled proceedings. 14

This certification is expressly denied upon the 15
disassembly and/or photocopying of the foregoing 16

transcript, or any portion thereof, unless such 17
disassembly/photocopying is done by the undersigned and 18

original signature and official seal are attached thereon. 19

Witness my hand and official seal this 16th day of 20

March , 2011, in Atlanta , Ful t on County, Georgia. 21

22

___ _________________________ _ 23

STEVEN RAY GREEN , CCR , CVR

- CM 24

CERTIFICATE NUMBER A

- 2102 25