### TESTIMONY

**Before**

**United States House of Representatives**

**Committee on Government Relations**

**Subcommittee on National Security, Emerging Threats, and International
Relations**

**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**

**Progress Since 9/11: Protecting Public Health and Safety of the
Responders and Residents**

**New York, N.Y.**

### September 8, 2006 

Thank you for having invited me to testify before you 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
(COEM) 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 have recently
been appointed Director of the World Trade Center Medical Monitoring
Program Data and Coordination Center. My Curriculum Vitae is attached.

As we approach the fifth anniversary of the terrorist attacks of
September 11, 2001, it is a fitting time to both remember those who
perished in the horrific events of that day, and to take stock of how
well we, as a nation, are caring for those responders who have
subsequently fallen ill and those who may become ill in the future.
These brave men and women unwittingly suffered massive environmental
exposures after 9/11. Although it has not been confirmed, an estimated
40,000 people performed rescue, recovery, restoration of essential
services, and clean up in the aftermath of the disaster. These
responders included both traditional first responders such as law
enforcement officers, EMS workers, and fire fighters, as well as a
diverse population of civilian workers and volunteers, including
operating engineers, laborers, ironworkers, telecommunications and other
utility workers, transit workers and others. While responders came from
a wide range of occupations and backgrounds, they worked shoulder to
shoulder, united in their selflessness, in order to rescue victims, and
quickly clean up and restore essential services to lower Manhattan. Now,
as many have become ill, I hope they will all receive the medical and
mental health care that they need and deserve, regardless of their
occupation at Ground Zero, their health insurance status, or whether or
not they find themselves reliant upon the New York State Workers'
Compensation System as they attempt to receive critically necessary
medical care.

**Baseline Screening and Medical Monitoring Programs**

Soon after September 11, 2001, various New York area health care
providers, including those at the Mount Sinai COEM, began seeing workers
and others with a range of health problems caused by their WTC
exposures. This early work was supported by the ongoing grant from the
New York State Department of Health that sustains our COEM.

Thanks to advocacy efforts of our partners in organized labor and key
legislators, notably Senator Clinton, Mount Sinai was awarded an \$11.8
million contract through NIOSH to design and coordinate a medical
screening program for WTC workers and volunteers; no money was allocated
to provide for long-term monitoring or for treatment. A consortium of
five healthcare centers in the New York/ New Jersey metropolitan area
was established with support from this grant to provide one free,
comprehensive, and confidential medical screening exam to each WTC
worker or volunteer who participated in the various rescue and recovery
efforts both at Ground Zero and the Staten Island Landfill, including
the removal of debris, the restoration of vital services, and the
clean-up of surrounding buildings in the WTC area. Additionally, we
worked with the Association of Occupational and Environmental Clinics
(AOEC) to coordinate a program component for responders who live outside
of the New York/ New Jersey area. Comprehensive standardized
examinations of WTC responders began in July 2002, with the goal of
identifying possible WTC-related physical or mental health consequences.
From its inception to its end in ­­­July 2004, the WTC Worker and Volunteer
Screening Program provided examinations to a total of almost 12,000
patients, including 11,125 seen in the New York/ New Jersey area, of
which 8,824 were examined at Mount Sinai alone, and an additional 650
patients seen by 34 clinics in 24 states.

From the very start of the MSP, it was clear that long term monitoring
and treatment would also be needed. In February 2003, after eight months
of advocacy efforts on the part of labor and elected officials, in
particular Senator Clinton and Congress Member Carolyn Maloney, an
additional \$90 million in federal funding was secured to create the WTC
Medical Monitoring Programs coordinated by both Mount Sinai and the
FDNY. In March 2004, Mount Sinai received the first of this federal
funding from NIOSH (1) to serve as a Data and Coordination Center for
the World Trade Center Medical Monitoring Program, and (2) to serve as a
Clinical Center which provides follow-up examinations once every
eighteen months for a period of five years to responders who had been
seen initially in the screening program and also continues to provide
initial screening examinations for responders. It should be noted that
the WTC responders served by our programs comprise a highly exposed
population which will require medical monitoring and access to treatment
for WTC-related health conditions for their entire lives. However, the
Medical Monitoring Program is currently funded through only 2009.

The WTC Medical Monitoring Program began seeing WTC responders in July
of 2004 and as of July 31, 2006, has provided over 4,887 initial
(Visit 1) examinations and 6,112 follow-up (Visit 2) examinations in the
New York/New Jersey regional consortium. In combination with the first
medical screening initiative, this represents a total of more than
22,000 examinations (both baseline and follow-up) provided to over
16,000 responders since July 2002. Initially awards were made to provide
examinations only in the New York/New Jersey area. Mount Sinai received
the first federal funding to provide Visit 2 and any subsequent
examinations nationwide on July 27, 2005, and has since provided over
130 examinations nationally. In June 2006, Mount Sinai received funding
to coordinate the provision of examinations to a total of only 60 former
federal employees. Since June 2006, 23 men and women have received exams
and another eleven have been scheduled to receive exams. However, many
more former federal employees have expressed interest in participating
in the MMP than was initially expected, and it has become clear that a
coordinated medical program will best serve the needs of the responders.
Everyone should be assured of the same quality of care regardless of
whether they currently live in the NY/ NJ metropolitan area. With the
anticipated increased need for an expanded national program, proper
planning and increased funding must be allocated.

It is important to note that a large number of responders are still
coming to the program for an initial examination five years after the
attacks. Indeed, within the past year, more than 2,000 eligible
responders became sufficiently concerned about their health issues and
are now seeking their first examination. This phenomenon highlights the
need for continued funding for initial screening examinations, as well
as follow-up medical monitoring exams and treatment, which I will
address in a moment. It can also help guide both our ongoing response to
the 9/11 attacks as well as our planning for future disasters.

## Medical Findings

Among the very first responders we examined under the auspices of the
MSP, we saw disturbingly high rates of respiratory symptoms and
pulmonary function test abnormalities, as well as persistent and severe
psychological consequences. These were published two years ago in the
Morbidity and Mortality Weekly Report (September 2004). Earlier this
week, we released the findings of the WTC Medical Screening Program,
which is the most comprehensive analysis completed to date, based on a
diverse population of 9,442 WTC responders whom we examined between July
2002 and April 2004 and gave consent to have their data aggregated. We
found that:

-   Some 70% of responders experienced new or worsened respiratory
    symptoms while engaged in their efforts in or near Ground Zero. At
    the time of examination, 59% were still experiencing a new or
    worsened respiratory symptom;

-   One third had abnormal breathing tests, which was a percentage far
    higher than we had expected; and that

-   Among responders who had never smoked, we saw more than double the
    expected rate of breathing test abnormalities -- 28% in our
    population versus only 13% in the general US population. This is a
    particularly striking finding because our patients tended to be very
    healthy workers before September 11 -- they had to be extremely fit
    in order to work in trades such as construction and law enforcement.
    The most common abnormality we observed, a low forced vital
    capacity, was more than five times more prevalent in our population
    than would be expected.

-   Early arrival to work on the rescue and recovery effort was
    significantly associated with an increase in the rates of
    respiratory symptoms and breathing test abnormalities. Indeed, the
    highest rate of abnormalities was observed among responders who were
    actually engulfed in the dust cloud. This finding is of particular
    concern because 70% of our patient population worked at Ground Zero
    between September 11 and 13, when exposures were most intense. The
    very strong relationship between time of exposure and the prevalence
    of symptoms and breathing test abnormalities strongly confirms the
    relationship between World Trade Center response work and
    respiratory disease.

-   We also asked our patients if they had seen a doctor for a health
    problem in the six months prior to and the six months following
    September 11. We found sharp increases in incidence rates of certain
    illnesses:

    -   40% of patients ever diagnosed with sinusitis were examined by a
        physician in the six months after September 11 compared to only
        12% who sought medical attention in the 6 months prior

    -   45% were diagnosed acute bronchitis in the six months following
        the disaster compared to only 12% diagnosed before and

    -   10 times more responders were diagnosed with pneumonia in the
        six months after September 11 than in the six months before.

-   Also of note is the fact that 14% of examinations were conducted in
    a language other than English.

In short, the World Trade Center responder patients were highly exposed,
they were highly symptomatic, and they had high rates of breathing tests
abnormalities as long as 2 1/2 years after the disaster. These findings
are consistent with the findings from other studies such as the FDNY
studies led by Dr. David Prezant, and they underscore the magnitude of
the problem of persistent respiratory illness among WTC responders.

# **Medical Treatment Programs**

One of the greatest concerns among the responders is how and where they
will be able to receive proper follow up diagnostic testing and
treatment for WTC-related physical and mental health conditions. As we
watched so many responders fall ill, and in many cases chronically so,
it has been apparent since early on that medical screening and
monitoring alone was insufficient - long-term medical treatment would be
equally necessary. This problem was compounded by the fact approximately
40% of Treatment Program patients either had no health insurance to
begin with or lost their insurance after they fell ill as a consequence
of their work following 9/11 and many more underinsured. At Mount Sinai,
we at first welcomed responders, as well as affected area residents and
office and other area workers into our state funded Mount Sinai Center
for Occupational & Environmental Medicine, but because we were seeing
large numbers of uninsured immigrant workers, we were particularly
concerned about our ability to meet the needs of these patients.

We were overwhelmed by the demand for treatment resources and, because
no federal funding was provided for treatment, we soon sought and
received funding from private philanthropic sources to establish the
World Trade Center Health Effects Treatment Program which was
established in January 2003 to provide diagnostic testing and treatment
as well as assistance in obtaining needed benefits, for responders with
WTC-related physical health problems. Given recent news reports, I
should reiterate that this program is and has always been open to all
eligible WTC responders in need of treatment, including immigrant
workers and without respect to insurance status with no out-of-pocket
cost to responders. Similar programs were funded to meet the mental
health needs of responders. To date, the physicians at the Health
Effects Treatment Program at Mount Sinai have had over 8,000 medical
visits with 2,137 patients, and the social work staff has had 6,167
visits with 1,934 clients, with significant overlap between the medical
and social work patient populations.

Among 1,443 patients seen in the past year, from August 2005 through
July 2006 in the World Trade Center Health Effects Treatment Program:

-   Fully 84% are still suffering from some kind of upper respiratory
    illness, such as chronic sinusitis.

-   47% have persistent lower respiratory problems such as asthma and
    WTC cough.

-   64% have some kind of gastrointestinal illness, mostly
    gastroesophageal reflux disease.

-   37% have persistent mental health consequences related to the World
    Trade Center disaster, including depression and post-traumatic
    stress disorder.

-   31% have chronic musculoskeletal problems, often from injuries that
    occurred when working on the pile.

-   Additionally, a large number of patients suffer from multiple
    WTC-related conditions, rendering diagnosis and treatment
    particularly challenging.

-   Half of the patients seen in the Health Effects Treatment Program
    received their medical care in a language other than English.

-   38% lacked any kind of health insurance, and another 42% were
    underinsured.

While it is not unusual to see a high level of physical and mental
illness in a clinical patient population, what is quite striking is
persistence of these illnesses four and a half years subsequent to
exposure at the WTC site. It is absolutely essential that these men and
women receive the best of care from healthcare professionals who are
familiar with the health impact of the World Trade Center disaster -- a
large number of people have been misdiagnosed and/or received
inappropriate treatment for their conditions. We are currently working
to develop a coordinated treatment program which is fully integrated
into each of the Medical Monitoring Program Clinical Centers which will
help to ensure that responders are able to receive standardized care
from physicians who have experience treating WTC-related conditions. I
would also like to take a moment to note that, while our focus has been
on the workers and volunteers who responded to the disaster, these
health effects are not limited to this population -- there are thousands
upon thousands of people who sustained similar exposures and who are not
eligible for any federally-funded medical monitoring or treatment
program.

Moreover, the impact of the World Trade Center disaster is not limited
merely to health consequences. Many of our patients are so disabled by
chronic pulmonary problems that they are no longer able to work. These
patients often lose their jobs, their health insurance, and find that
Workers' Compensation insurers are fighting their claims. For these
reasons and more, a social work component has been critical to our
service provision. Our social work team is dedicated to helping these
responders access benefits programs, file for Workers' Compensation, and
otherwise resume living as normal a life as possible. However, the
resources we are presently capable of offering are simply too limited.

Currently, generous funding from the American Red Cross has enabled
Mount Sinai, FDNY, and the other Clinical Centers to expand WTC related
treatment programs in order to better serve responders. The AOEC has
also received funding to provide treatment to those who live outside the
New York/ New Jersey metropolitan area. While we are very grateful to
these philanthropies for stepping in to fill such important patient
needs, we have always considered private funding to be a stopgap rather
than a long term solution to what is certain to be a long term problem.

Thanks in large part to the diligent work of our partners in organized
labor and legislators, including Congress Members Maloney and Fossella,
Senator Clinton and the NY delegation's support, Congress returned \$125
million initially earmarked to meet responder health needs in December
2005, with \$75 million allocated to provide continuing medical
treatment and monitoring for responders. The program providers at Mount
Sinai and our consortium partners anticipate using the almost \$27
million that has been set aside for our consortium to provide treatment
for physical and mental health illnesses, including medications and
in-patient care. Tens of thousands of responders who are presently ill
or will become ill as a result of their service to our nation will
benefit from this additional funding. The patient population to benefit
from this includes the thousands of responders who are presently ill and
those who may still become ill as a result of their service to the
nation. However, \$27 million could easily be spent in as little as one
year if this money is used to provide all non-FDNY responders with
medications and both in-patient and out-patient treatment for any
WTC-related medical and psychological conditions at multiple regional
sites as well as nationally. Due to the horrific and unprecedented
nature of the exposures at Ground Zero and the Staten Island Landfill,
we can only begin to guess at what the future holds for these responders
and know that the current funding remains grossly inadequate.

We are indebted to these workers for their selfless actions, and we are
obligated to provide them with the absolute best of care. We, as
healthcare providers, should not be forced to ration care, just as those
who are the most gravely ill should not be forced to choose between food
and medicine. Consistent, adequate federal funding should be provided to
take care of those who responded to the attack on our nation.

## Lessons Learned and Current and Future Needs and Gaps

## Lesson #1: The Need to Establish New Medical Resources

Although New York had an extensive hospital network and a strong public
health system on September 10, 2001, this preexisting infrastructure was
in no way sufficient to provide unified and appropriate occupational
health screening and treatment in the aftermath of 9/11. Disaster sites
are invariably scenes in which exposures are intense and uncontrolled,
and in which illnesses are severe and unpredicted. The rapid
establishment of highly competent medical resources is necessary to cope
with such situations. This need became apparent soon after September
11^th^, as occupational medical centers as well as other varied health
care providers began seeing workers and others with a range of upper
airway, lung, gastrointestinal, and mental health symptoms and reports
of these occurrences began to appear.

An invaluable component of the MMP is its ability to identify patterns
of WTC-related health conditions, both physical and psychological.
However, additional funding is needed to allow for continuing data
tracking and analysis of exams and treatment so that we can better
tailor subsequent monitoring examinations and provide appropriate
treatment. We recognize the potential of increased cancer rates and the
enormous impact that cancer would have on the WTC responders and their
families and we have said from the beginning that we are concerned about
the possibility of cancers in responders, and especially about cancers
that may be triggered by asbestos and other toxic chemicals. We are
working with all the Clinical Centers to develop an active surveillance
system to allow participants to inform us of any changes in their health
status, such as the development of cancer, during the time period
between their visits. This surveillance system will be linked to cancer
registries and death registries, so that we can collect as much
information as possible about our patients, and their health status.

When the Federally-funded treatment program is established, it is vital
that there be adequate funding provided to support the Data and
Coordination Centers to collect diagnostic and other clinical
information essential to an effective disease surveillance program.
There should be on system for collection of data from the entire
"non-FDNY" cohort, so that as responders retire and/ or relocate
throughout the nation, there is no loss of the ability to track patterns
of emerging diseases.

The mandate of these programs included the referral of responders for
follow-up diagnostic studies and appropriate treatment when warranted by
the clinical findings of their examinations, yet no resources were
initially allocated to enable us to provide such care. This was a clear
shortcoming that must be addressed in the aftermath of future disasters,
whether natural or man-made. Many of the responders had no health
insurance and those who did found it difficult to obtain treatment
guided by the expertise needed in the evaluation and management of their
illnesses.

Lesson #2: The Inadequacy of Workers' Compensation Programs in the
Context of Disaster

Many of the WTC responders who are our patients filed claims with the
Workers' Compensation system to obtain coverage for their medical care
only to find their cases opposed by Workers' Compensation insurers or by
self-insured employers. The result was that many hundreds of brave
workers who had volunteered to serve this nation at the site of the
World Trade Center had to endure many months of needless and physically
damaging delay in receiving medical care. We do not subject members of
our armed services to such delay, and it is unconscionable that our
health care system imposed these burdens on WTC responders. Indeed, many
responders found themselves unable to work in their usual trades where
irritant exposures, readily tolerated before September 11^th^, now
provoked asthmatic symptoms. This resulted in a loss of their health
care benefits when they were needed most.

To address this situation, in August of this year, Governor Pataki
signed into law new legislation that removed one of the barriers that
these responders have had to overcome in the New York State Workers'
Compensation system. But, five years after the disaster, many responders
are still in need of follow-up treatment for WTC-related physical or
mental health illnesses.

Lesson #3: The Persistence of Illness

Based on our accumulated knowledge in the aftermath of 9/11 and general
medical science, there is no question that, as a result of their
horrific exposures, thousands of World Trade Center responders have
developed chronic and disabling illnesses that will likely be permanent.
Sadder still, we continue each year to see new patients in the Medical
Monitoring Program who have either never been treated for their WTC
illnesses, or who have received delayed or sub-optimal treatment. Some
of these delays are due to the aforementioned shortcomings of the
Workers' Compensation system. We also now know -- based on over four
years of follow-up since the attacks -- that it is likely that thousands
of World Trade Center responders will need long-term medical care for
their World Trade Center related physical and mental health conditions.

Lesson #4: The Need for Continuing Medical Surveillance

Continuing medical surveillance and follow-up will be essential for the
WTC responder population. Responders were exposed to many carcinogens at
the WTC site, including asbestos, benzene, and dioxins. 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. Indeed, because WTC
responders sustained unprecedented exposures for which the long-term
consequences are unknown, we strongly recommend screening this
population for at least twenty to thirty years in order to ensure that
diseases that can develop years after exposure can be detected when they
are still treatable.

Lesson #5: The Need for Uninterrupted, Guaranteed Long-Term Federal
Funding

As I mentioned before, current funding will permit the WTC Medical
Monitoring Program to conduct screening examinations of 12,000 WTC
responders once every 18 months for a total of five years only.
Philanthropic sources have provided funding for the Health Effects
Treatment Program, but this is limited in scope and duration. It is
urgent that funding be made available to provide access to medical and
mental health care for all who sustained health consequences from the
World Trade Center disaster. This can be achieved by:

-   Supplementing the current appropriations to provide medical
    monitoring and treatment for the lifetime of responders through a
    coordinated consortium of clinical centers with expertise in
    screening for, diagnosing, and treating WTC-related health
    conditions.

-   Guaranteeing access to the diagnostic testing necessary to confirm
    or rule out possible WTC- related health problems identified in the
    screening examinations and providing treatment for all WTC related
    health problems identified;

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-   Integrating monitoring and treatment programs to ensure that those
    who develop future health problems related to the WTC exposures are
    able to receive treatment for those conditions including both
    out-patient and in-patient care as well as medications;

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-   Supporting clinical research to better understand and track the
    human health consequences of World Trade Center exposures and
    identify treatment modalities for those conditions;

-   Providing adequate resources for the local residents, office and
    other area workers and school children whose proximity to the site
    may have caused them to suffer similar exposures as the responders.
    Workers and volunteers involved in rescue recovery efforts, workers,
    residents, and school children from areas affected by WTC
    contamination have thus been left at the mercy of a patchwork of
    health care resources, posing a difficult challenge for the
    screening programs to carry out their referral responsibilities.

Lesson #6: The Need to Remember the Lessons Learned and to Apply them in
Future Disasters

It is clear in the aftermath of the WTC disaster, and has been
reemphasized by the events in New Orleans after Hurricane Katrina, that
there is an urgent need for our nation to improve its disaster response
planning and also to ensure adequate funding for these programs. We
learned from the Vietnam War and the first Gulf War how important mental
health problems are in the wake of extreme stress and we applied those
lessons in the Balkans and after September 11^th^ to good effect. Now we
need to learn from the terrible events that transpired in New York City
how to rapidly fund and establish medical screening and treatment
programs. Disease and injury are the inevitable consequences of
disaster, and we need to plan for them. We need to study these events to
learn how to best conduct rescue and recovery operations that will not
only minimize the loss of life among disaster victims, but also curtail
disability and illness among the responders. We need to commit ourselves
to sustain these programs over the long term to keep faith with those
responders who rise in the hour of need to serve America.

## Conclusion

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 of the responders. I hope that my comments today will serve as a
reminder of the long-term and widespread impacts of this disaster.

Thank you.