### TESTIMONY

**Before**

**United States House of Representatives**

**House Committee on Oversight and Government Reform**

### Subcommittee on Government Management, Organization, and Procurement

**By**

**Robin Herbert, M.D.**

**Director, World Trade Center Medical Monitoring Program Data and
Coordination Center**

**Associate Professor, Department of Community and Preventive Medicine**

**Mount Sinai School of Medicine**

**Hearing on**

9/11 Health Effects: Federal Medical Monitoring and Treatment of
Residents and Responders

### Washington, D. C.

### February 28, 2007 

Chairman Towns, Ranking Member Bilbray, and other Members of the
Government Management, Organization and Procurement Subcommittee of the
Committee on Oversight and Government Reform: thank you for inviting me
to testify today.

My name is Robin Herbert, MD. I am an Associate Professor in the
Department of Community and Preventive Medicine of the Mount Sinai
School of Medicine, and have served alongside Dr. Stephen Levin as
Medical Co-Director of the Mount Sinai Center for Occupational and
Environmental Medicine since 1990, and also as Co-Director of the World
Trade Center Worker and Volunteer Medical Screening Program and the
World Trade Center Health Effects Treatment Program at Mount Sinai. I
currently serve as the Director of the World Trade Center Medical
Monitoring Program Data and Coordination Center at Mount Sinai.

Having recently marked the fifth anniversary of September 11th, it is a
fitting time to review what we have learned so far about the devastating
acute and long-term health impacts of that day. In light of our growing
understanding of the health consequences of the September 11th terrorist
attacks on the nation, which affect thousands of Americans -- both in
the New York metropolitan area and nationally -- this is also an apt
time to take stock of how well we, as a nation, are caring for World
Trade Center responders and others who have fallen ill or may become ill
in the future.

It is estimated today that well over 50,000 people worked or volunteered
in the aftermath of the attacks in and around the World Trade Center
area, and the Staten Island landfill. These included traditional first
responders such as firefighters, paramedics, and law enforcement
officers, as well as a large and very diverse population of heavy
machinery operators, laborers, ironworkers and others from the building
and construction trades, telecommunication workers, transportation
workers, sanitation workers and volunteers, and others from the public
and private sectors. A grateful nation celebrates these men and women as
heroes. However, unfortunately, during the course of their selfless
work, WTC responders were exposed to a complex mix of toxic chemicals,
physical hazards, and extreme psychological trauma which have resulted
in well-documented upper and lower respiratory and mental health
consequences as well as chronic sequelae of injuries.

In September 2006, we released a paper in the medical journal
*Environmental Health Perspectives,* detailing the findings from
federally funded examinations of 9,442 WTC responders whom we and our
partner institutions had examined between July 2002 and April 2004. I
have appended this study for your review, and I would like to direct
your attention to a few key findings:

-   Among these responders, 69% reported experiencing new or worsened
    respiratory symptoms while engaged in their efforts in or near
    Ground Zero.

-   At the time of examination, up to 2 ½ years after the start of the
    rescue and recovery effort, 59% were still experiencing a new or
    worsened respiratory symptom, a finding which suggests that these
    conditions may be chronic and require ongoing treatment.

-   Rates of both upper and lower respiratory symptoms remained higher
    than expected, even among responders who began working on or after
    October 1, 2001.

One of the most worrisome findings was the increased rate of breathing
test abnormalities when compared with the general U.S. population. In
non-smoking patients from our study we found five times more people than
expected to have an abnormally low forced vital capacity, or FVC. A low
FVC can be caused by a variety of conditions, including asthma with "air
trapping", large body mass, and interstitial lung diseases (scarring
diseases of the lungs) of the sort that have resulted in known
fatalities among a few WTC responders.

Our findings are consistent with the results of other federally funded
programs designed to screen WTC responders for disease. Given what we
now know about health consequences of the WTC disaster, regular
monitoring/screening examinations for the lifetime of the responder
population is essential for the early detection and treatment of these
and other potentially devastating diseases. WTC responders were exposed
to a broad array of toxins including asbestos, volatile organic
compounds, PCBs, dioxins, and pulverized concrete, some of which can
cause various cancers and other longer term as well as short-term
chronic and severe conditions. Unfortunately, we do not know the
complete range of chemicals to which responders were exposed, nor the
potential health effects of the combined exposures they sustained. Thus,
it has been imperative to develop approaches to the medical care of
responders that are linked to disease surveillance efforts and to
specialized treatment. By offering standardized, comprehensive
examinations designed to identify possible WTC related physical and
mental health consequences of the disaster, we can screen to find
diseases early and improve health by initiating treatment early.
Additionally, we can gather composite information on the health impacts
of the disaster so that we can identify disease patterns early. Early
identification of disease patterns will provide knowledge that will be
critical to the responders themselves, because it can be used to target
screening examinations to identify emerging diseases with the goal of
providing early diagnosis for the responders. Dissemination of
information derived from disease monitoring in screening and treatment
can then be used to improve treatment of WTC related illnesses. The
ultimate goal is to prevent death and disability and to improve quality
of life for those who gave so much. We greatly appreciate the federal
funding that has been provided to date, which is supporting this model
by funding screening/monitoring examinations and follow up testing and
treatment.

In April 2002, the Mount Sinai Medical Center received funding to
establish the World Trade Center Worker and Volunteer Medical Screening
Program in response to growing concern about health effects among WTC
responders. The Screening Program was operated as a consortium of
regional Centers of Excellence and a national program that provided
uniform, free, comprehensive screening examinations for WTC responders.
These examinations, focused on identifying possible WTC-related physical
and/or mental health conditions. The Screening Program expanded to
become the World Trade Center Medical Monitoring Program in July 2004
thanks to additional federal funding. This funding will allow for
screening examinations for responders every 18 months until 2009, at
which time the program will come to an end unless federal funding is
renewed.

Thanks to this federal support, over 20,000 WTC responders have received
an initial medical screening exam to date through the Mount
Sinai-coordinated consortium of occupational medicine providers. While
the majority of responders examined reside in the New York/ New Jersey
metropolitan area, a number of responders also hail from across the
country. Indeed, responders came from as far away as California to
assist in the rescue and recovery effort. Even now, over five years
since 9/11, about 400 new participants register to receive baseline
screening examinations each month. Thanks to federal support, over 7,250
responders have also received at least their first follow-up or
comprehensive monitoring examination.

Presently, responders found to have possible WTC related physical or
mental health consequences are referred immediately into the Specialized
WTC Treatment Program arm of the Medical Monitoring and Treatment
Program. Until November 2006, these treatment programs were sustained
only by generous but limited philanthropic funding. This federal funding
has been a major boon to the WTC responder population by allowing the
Treatment Programs to expand services and, at Mount Sinai alone, bring
in an astounding 100 new patients per month. However**,** as you are
also likely aware, that funding is likely to run out, before the end of
this fiscal year. Federal funding for the first five years, of a 20 to
30 year medical monitoring program, is scheduled to likewise run out by
July of 2009.

The findings from the Medical Monitoring Program are underscored by the
spectrum of disease seen among responders attending the Treatment
Program arms of the New York/ New Jersey consortium clinical centers.
The most common conditions seen among responders in treatment to date
more than echo those seen in the larger Monitoring Program population.
Mount Sinai's WTC Health Effects Treatment Program is the largest of the
five Consortium Clinic Treatment Programs and has provided medical
services for some 3,000 patients to date, as well as social work
services provided to some 2,200 patients. (There is substantial overlap
between these two populations). Of treatment program patients seen from
August 2006 to December 2006:

-   86% were diagnosed with an upper respiratory condition, such as
    chronic sinusitis;

-   51% were diagnosed with a lower respiratory condition, such as
    asthma and WTC cough;

-   32% were diagnosed with a gastrointestinal condition, predominantly
    gastroesophageal reflux disease;

-   29% were diagnosed with a musculoskeletal condition, often the
    result of an injury sustained while working on "the pile"; and

-   38% were diagnosed with a mental health condition, including PTSD,
    anxiety, or depression in addition to their physical ailments.

Sadly, most patients seen in the program suffer from multiple
WTC-related conditions. This complicates the management of their
conditions, as well as their access to certain benefits like Workers'
Compensation. Indeed, access to adequate healthcare has been a major
problem for many Mount Sinai Treatment Program patients. More than 44%
of our patients are uninsured. An additional 23% are underinsured. The
Treatment Program patients comprise a particularly vulnerable population
-- one that is in need of a comprehensive program that provides medical
and mental health coverage, is available in their native language, and
is not reliant on private insurance. For our patients, the services
provided through philanthropic and federal funds have been a lifeline,
and the importance of this program will only increase with the passage
of time and the potential emergence of disease.

Since the inception of the World Trade Center Worker and Volunteer
Medical Screening Program, the first federally funded screening program
established by Mount Sinai in April 2002, and a parallel program
established by New York City's Fire Department, it has been clear how
the existence of these programs have benefited responders as an
appropriate national response and one critically necessary to operate
well into the future.

-   The benefits of and need for appropriate diagnosis of and treatment
    for WTC-related conditions based on the collective experience of
    occupational and environmental medicine specialists has been
    established.

-   The benefits of developing the programs based on the direct input of
    the affected populations, including organized labor, is established.

-   The need for treatment with no out-of-pocket cost for those affected
    is established.

-   The need for long-term medical monitoring is established.

-   The need for an active system of disease tracking and surveillance
    in order to identify and treat emerging diseases while they are
    still treatable is established.

Our program has been designed and implemented to provide the greatest
benefits and meet the demonstrated needs of our patient population. We
believe that our program, and the lessons we have learned in the wake of
September 11th, should help guide future disaster response.

The programs provide a comprehensive, standardized approach to providing
the physical and mental health monitoring and treatment so desperately
needed by WTC responders. Just as importantly, the clinical data
collected and aggregated from these clinical programs provides an
opportunity to come to a scientific understanding of the health effects
of the horrific exposures sustained in the months following the
terrorist attacks. This information benefits not only participants of
our program, but also others who may not be eligible to participate in
this or any monitoring and treatment program, in that it can guide the
care provided by healthcare professionals across the country.

From the beginning, the FDNY and NY/ NJ Clinical Consortium programs
have worked together to ensure that all responders receive the same
standard of care. As we move forward, plans are already underway to
allow for the expansion and integration of the existing Treatment
Programs into the Monitoring Program. This integration affords patients
streamlined access to high quality, standardized diagnostic and
treatment services with clinicians who have unsurpassed experience in
identifying and treating WTC-related illnesses. Previously, patients had
to wait months to begin treatment; now that wait has been eliminated
because physicians can prescribe much-needed medications during a
monitoring examination. Perhaps most importantly, we are already working
to put in place a system in place to monitor for so-called sentinel
health events among treatment program patients.

The current working model is structured as a consortium of Clinical
Centers of Excellence and a Data and Coordination Center -- a model
particularly well suited to dealing with unique medical conditions or
unusual exposure situations in that clinicians gain unique expertise in
dealing with affected patients. Similar models have been used by a
number of federally funded programs with great success, including
programs funded by the FAA, the Department of Energy, the National
Security Agency, and the Department of Homeland Security. The WTC
Program Clinical Centers are located at Mount Sinai, Bellevue/NYU, SUNY
Stony Brook, Mount Sinai Queens Hospital, and UMDNJ. They are staffed by
clinicians with unparalleled experience in identifying and treating the
conditions associated with exposures sustained following the attacks.
The Data and Coordination Center is located at Mount Sinai, and it acts
as a centralized clearinghouse of information by coordinating the
activities of the Clinical Centers, facilitating the dissemination of
best practices, and compiling and analyzing the data gathered during
each examination. While there are other models of providing this care,
we do not believe that they can ensure the same levels of clinical care
and expertise of our current model.

The need for a permanent source of funding for ongoing monitoring and
treatment for responders is clear. While private philanthropy has been
an important vehicle helping to pay for treatment in the past, it is
certainly not a sustainable solution. Some have proposed that we use
solely private health insurance to cover the costs of treatment, but our
experience with the Treatment Programs has indicated that this is also
clearly not viable. The rates of uninsurance and underinsurance among
those seeking treatment are already high and, as responders become more
ill, they are likely to lose their insurance altogether. In addition,
Workers' Compensation poses great obstacles for responders seeking
timely treatment. In our experience, it can take years for a case to be
established, and even then there are restrictive rules imposed on
patients. For example, a patient in need of a sinus CT scan must, under
the general New York State Workers' Compensation Law, get pre-approval
because of the expense of the procedure. The pre-approval process can
take months, effectively delaying the timely diagnosis and treatment
necessary for adequate care. To date, the number of responders who have
needed hospitalization has been relatively low, but we also expect this
number to increase over time. Many responders are non-English speaking
and their monitoring and treatment requires additional translation
efforts, currently provided by these programs. Future program plans need
also consider a potential diffusion of the responder population around
the United States.

Because of the extremely complex and hazardous nature of exposures
sustained following the attacks, we also expect to see new morbidities
develop over time. While the exact extent of the health effects of WTC
exposures is not fully known, it is known that responders were exposed
to a wide range of toxins, including cancer causing agents and
substances that can cause long term respiratory problems. For many
patients in our program, the fears of future diseases like cancer, which
can take as long as twenty to thirty years to develop, loom as large or
larger than concerns about their acute ailments. It is absolutely
essential that responders receive periodic standardized examinations for
the rest of their lives to identify newly emerging conditions and to
monitor the persistence of currently observed WTC-related conditions.
However, it is equally critical that monitoring be coupled with
treatment which allows patients access to state-of-the-art diagnostic
services and treatment by clinicians well-versed in the complex nature
of WTC health effects and outcomes.

Five years following the attacks on the World Trade Center, thousands of
the brave men and women who worked on the rescue, recovery, and clean up
efforts are still suffering. Respiratory illness, psychological
distress, and financial devastation have become a new way of life for
many. I hope that my comments today will serve as a reminder of the
long-term and widespread impacts of this disaster, and of the need for a
continuous program which gives these men and women the care they
deserve.

Thank you.