Award Damages Commensurate with Costs, Compensate Swiftly and Increase
Medical Research Funding: Comments on SB 852
We are concerned citizens, an alliance of doctors and patients, brought
together by our mission to defeat mesothelioma as a life-ending disease.
We are intimately familiar with the financial, medical, physical and psychological
hardships to which mesothelioma patients and their families are subjected.
Mesothelioma is a cancer that arises from the cells lining the chest and/or
abdominal cavity. It typically develops 20-40 years after exposure to
asbestos. This deadliest of all asbestos-related diseases is almost uniformly
fatal. It strikes indiscriminately, afflicting construction workers, housewives,
Olympic Gold Medalists, Hollywood actors like Steve McQueen, U.S. servicemen
and women (as many as a third of all cases, including Navy Admiral Elmo
Zumwalt, Jr.), and even U.S. congressmen (Minnesota Rep. Bruce F. Vento).
Its victims are often in the prime of their lives.
The average person with mesothelioma lives only 6-18 months after diagnosis.
A minority (40 to 45 per cent) responds to the most effective chemotherapy,
which lengthens survival by only 3 to 6 months. A small number are candidates
for radical surgery, which along with radiation, chemotherapy, heat, and
experimental therapies may slow disease progression further. Very few
live more than three years.
We applaud our government's recognition of the need to jointly fund
with industry and their insurers a comprehensive mesothelioma treatment
and research program. Funding for mesothelioma research has been proportionately
much lower than that for other cancers.
The proposed Asbestos Trust Fund Bill, SB 852, is an important first step
towards framing the asbestos cancer epidemic as a public health crisis,
as opposed to a litigation crisis. While a complete review of SB 852 is
beyond the scope of our expertise, we are concerned about the following
components of the proposed law:
1. The $1.1 million cap does not adequately address the needs of mesothelioma patients.
The cap is insufficient to meet the medical, hospital, travel, lodging
and other costs of mesothelioma patients who receive the best treatment,
which includes surgery, chemotherapy radiation, or a combination of therapies.
Moreover, it is insufficient to address the ongoing medical costs of patients
who survive long enough to outlive the median survival time but who remain
disabled and unable to earn a living. The bill therefore discriminates
against early stage, usually younger, patients whose life-long medical
costs are certain to exceed the $1.1 million cap.
Moreover, we do not believe the pre-determined awards adequately compensate
mesothelioma patients for the extraordinary pain and suffering they must
endure. This is especially true for those patients who pursue aggressive
treatment instead of opting for palliative treatment only.
2. Delays in the distribution of compensation will hurt patients.
Under S 852, civil claims by mesothelioma patients, even those with imminent
trial dates, will be terminated. Patients will not be eligible to collect
any compensation from the Trust Fund until it is up and running. Legal
experts predict it may take years for the new federal bureaucracy to begin
making partial payments on claims.
Mesothelioma patients have a life expectancy of between 6 and 18 months
on average. As the Trust Fund is currently established in S 852, most
patients are likely to pass away before they receive compensation. It
is vital that the Trust Fund distribute awards to mesothelioma patients
while they are still alive, so they can invest the money in life-extending
3. Defendant companies should fund the National Mesothelioma Research and
Treatment Program (NMRTP) at higher levels than outlined in S 852.
We commend Senators Herb Kohl, Patrick Leahy and Arlen Specter for laying
the foundation for a mesothelioma research and treatment program. As written,
S 852 would authorize $29 million per year to go toward basic and translational
research, a registry and tissue/blood bank and educational center. However,
we are deeply concerned that, unless the above Senators take action today
to insure the additional funding to the NIH, this vital program is destined
to become another "unfunded mandate."
This legislation presents an historic opportunity to ensure that the parties
responsible for the great harm caused by asbestos exposure are held accountable
for funding research that will mitigate the damage. Currently, industry
would contribute only $17 million per year, or 58% of the program. SB
852 would allocate only .2% of the $140 billion trust fund towards research
on the prevention, detection, treatment and cure of mesothelioma.
While we believe that this program is a good starting point, we strongly
encourage Congress to consider other measures that will force asbestos
manufacturers and insurers to provide more funding for research. At least
1% of the value of the projected $140 billion Trust Fund should be set
aside for medical research. Moreover, the program should be funded separately
from the money earmarked for compensation. Patients with asbestosis, other
asbestos-related cancer, and mesothelioma should not be taxed for curing
a disease they did not cause.
The patient and medical communities believe that much ground has been lost
in finding effective treatments and cures for mesothelioma, a cancer that
has been known for over 55 years. The National Cancer Institute spends
only 1/10 of 1% of its annual budget on mesothelioma-related research.
While it is an uncommon disease, affecting about 3,500 individuals a year
on average, mesothelioma is funded at much lower levels than other cancers
of similar incidence rates. The federal government currently spends only
$933 of research funds per mesothelioma patient, while it devotes $17,300
(nearly 20 times as much) for each patient with cervical cancer, a disease
which kills roughly the same number of persons each year.
This legislation presents an opportunity to demand that the responsible
parties fully and fairly compensate victims of asbestos exposure and ensure
that they have the best hope for treatment and survival through innovative
We ask that Congress strongly consider concerns outlined above when debating
the future of S 852.
The following pages provide background on mesothelioma and justification
for our stated concerns
Mesothelioma is an uncommon but deadly cancer associated with exposure
to asbestos. Mesothelioma is a cancer, or malignant tumor, arising from mesothelial cells, which
are found primarily in the linings of the chest, abdomen, and heart. Mesothelioma
is the deadliest of all asbestos-caused illnesses. Although there is no
safe threshold for asbestos exposure, studies show that those groups with
the highest occupational exposures suffer the greatest mortality.
Once the diagnosis is made, the prognosis is always grim. A fatal outcome
is considered "uniform" and "nearly inevitable." Median
survival rates are in the range of 6 to 18 months, and most patients who
are diagnosed in the later stages of the disease are given only supportive
or palliative treatment.
Even the most successful chemotherapy regimen increases the median survival
by only 3 months, and only about 40% of the patients who take the "standard
care" chemotherapy regimen show any response. Patients who have their
tumors surgically debulked are virtually certain to suffer a recurrence
within the next 12 months. During treatment, patients experience chronic
fatigue and shortness of breath, making it nearly impossible to continue
their chosen craft or profession. Mesothelioma is a permanent disability
that results in death.
Without a national registry, a precise estimate of mesothelioma incidence
cannot be established. Public health figures report that about 2,500 to 3,500 individuals are
diagnosed with mesothelioma in the United States per year.
The latency between asbestos exposure and the diagnosis of mesothelioma
is a confounding factor in establishing the current incidence and projecting
future rates. We do know that the incidence of mesothelioma is rising.
Even with the asbestos mitigation efforts initiated 20 to 25 years ago
in this country, mesothelioma incidence is expected to peak sometime in
the next 15 to 25 years. Over 27 million Americans have been occupationally
exposed to asbestos and are thus at substantial risk for lung cancer and
A national registry would also help track mesothelioma cases and establish
geographic or other factors related to asbestos exposure. Mesothelioma
does not respect the color of one's collar, their military rank, age,
political power, influence or physical fitness. At-risk populations not
only include workers directly or indirectly exposed, but also housewives,
children, and schoolteachers who were exposed second-hand or environmentally.
Additional research funding will help to identify new markers of asbestos-related
cancers so that tumors can be detected early enough to allow life-extending
A commitment to fund research into effective treatment and cures will help
to reverse overwhelming hopelessness in the medical and research communities.
While patients often present with a myriad of clinical symptoms, from chest
pain to shortness of breath to abdominal distention, there are new diagnostic
imaging tools that help facilitate a definitive diagnosis, such as the
PET-CT scan. Pathological analysis will confirm the diagnosis, through
the presence or absence of specific markers in tissue taken from the tumor.
New technologies may provide early detection of mesothelioma based on
the presence of biomarkers in blood, serum and tissue. These techniques
should be refined and validated immediately, so that they can be offered
to populations at high risk.
Limited funding has resulted in little research attention to early detection,
and the paucity of effective treatments has resulted in fewer numbers
of doctors willing to treat the disease, with many simply making an immediate
and hope-depriving recommendation for hospice care. Only a handful of
doctors in a few hospitals nationwide currently have the expertise to
offer the newest treatment options.
A commitment of research funding will help to reverse this trend by attracting
new investigators to the field, providing hope to both medical professionals
and patients that effective treatments are on the horizon.
Physician education through a national education center is critical in
disseminating information to the medical community. Given the rarity of the disease, the likelihood is high that a patient's
primary care physician has not seen a mesothelioma patient. Even physicians
who practice in areas where former asbestos workers are concentrated may
only encounter one new case a year. Many are unaware of national protocols
for surgical and novel chemotherapeutic regimens, or they may feel that
the standard of care should be symptom palliation only.
Faced with this overwhelming defeatism, many patients and family members
will retreat into isolation and hopelessness, as they attempt to follow
their doctors' advice to "get their affairs in order and prepare
Compensation caps do not adequately address the fact that treatment of
mesothelioma is extremely difficult and expensive.
Many patients seek treatment at the handful of medical schools, teaching
hospitals, and cancer centers that have developed specialized mesothelioma
care. Few of these patients will be candidates for treatment, since more
often than not the disease is diagnosed after there has been lymph node
involvement, progression of tumor bulk or extensive metastases. For those
patients who are candidates, the best treatment is a multimodality approach
consisting of surgery to locally control the disease, chemotherapy or
other novel drug treatment, and possibly radiation.
Surgery for mesothelioma is a serious and risky option, only performed
routinely by a handful of surgical specialists in the United States. Many
patients and desperate families must travel long distances to reach a
medical center with specialty care in mesothelioma, causing an immediate
financial, psychological, and physical burden. Once an institution is
located, tests to see if the patient is functionally able to participate
in the aggressive programs must be performed. This adds another layer
of financial difficulty.
Moreover, there is the huge and frightening question of whether the patient's
insurance carrier will pay for the out-of-state or "out-of-group"
treatment necessitated by the lack of local experts. Although this cancer
does not respect the color of a patient's collar, a substantial percentage
of patients are poor and uninsured. Most health insurance plans do not
cover treatments that they consider "experimental." Many refuse
to reimburse hospitals for performing PET scans, for example, which have
been shown to be valuable for diagnosing and staging mesothelioma.
These financial and psychological burdens are only a prelude to the physical
pain that follows surgery of the chest. Rib resection, muscle cutting
and spreading, and placement of tubes in cavities all contribute to postoperative
discomfort. This can be ameliorated in the first few days after surgery
with epidural analgesia, but this is not always offered. Narcotics are
effective in reducing the pain, but side effects are common, including
constipation, nausea, lack of appetite, and confusion. As the postoperative
pain diminishes, the patient then faces the physical ordeal of chemotherapy
or radiation. He or she also must adapt to living with one lung, chronically
short of breath and in pain.
Recovery from this invasive, complex surgery is slow and painful. Patients
are homebound, unable to work and without income (except perhaps disability),
for many months afterward.
We believe that the legislation should require the companies responsible
to allocate additional funds directly towards an asbestos cancer patient
The program would help indigent or uninsured patients pay for the travel
and lodging expenses associated with seeking treatment at the handful
of specialized centers for mesothelioma treatment. Not only will the money
directly help patients obtain the treatments they desperately need, it
will also help increase enrollment in vital clinical trials and novel
treatment protocols and ensure that the registry and tissue bank capture
all relevant data, which will advance the march of scientific research.
This patient-friendly system is already used by the National Institutes
of Health (NIH) in order to assist patients who are participating in protocols
in Bethesda, Maryland.
With surgery, expensive pain medications, and weeks to months of chemotherapy
or other novel drug treatment and radiation, a patient's medical expenses
can range from several hundred thousand dollars to well over a million
dollars. The medical bills can easily consume an entire life's savings.
Table 1 outlines actual medical costs for fourteen mesothelioma patients
who sought recovery for their medical bills in civil court.
VERIFIED MEDICAL COSTS FOR MESOTHELIOMA VICTIMS
The numbers do not include out of pocket, travel and lodging costs, or
other incidentals such as OTC drugs etc.
One of the goals of treatment is to extend life; with each passing day
treatments improve and the discovery of a cure becomes more possible.
When mesothelioma is diagnosed at a late stage there are few treatment
options, but patients who discover their diagnosis early are candidates
for the best available care. Unfortunately, the longer these patients
survive, the more costs they and their families will incur - at the very
time that the patient's permanent disability renders him unable to
earn a living.
As written, the bill would cap compensation for mesothelioma victims at
$1.1 million, regardless of the claimant's age, lost earnings capacity,
life expectancy, number of dependants, medical and financial hardships,
and other factors, such as pain and suffering.
The recovery cap elevates administrative convenience over substantive justice.
It fails to adequately address the extreme physical, medical, emotional
and financial hardship suffered by mesothelioma patients and their families.
We ask that the legislation address the exceptional suffering of mesothelioma
patients. Although there is no universal standard for measuring "suffering,"
we submit that on a scale of 0 to 100, mesothelioma patients typically
are at the highest range of this scale.
The conclusion is inescapable: medical bills for younger mesothelioma patients
who pursue life-saving treatment can easily exceed the $1.1 million cap
on awards prescribed by SB 852. The bill works against younger patients
and long survivors, and as treatments improve, their numbers will increase.
If a trust fund is the best remedy, we urge our government to adopt the
same model that it used to compensate victims of the 9/11 terrorist attacks,
and permit claimants to present evidence of their losses before an impartial
arbiter who is not bound by arbitrary caps. We note that the average compensation
awarded by the U.S. Government in 9/11 death cases was $2 million, and
the compensation awarded to injured claimants was between $250,000 and
The undersigned are encouraged by the effort to globally compensate victims
of asbestos exposure and provide long overdue research funding for this
neglected, orphan asbestos-related cancer. However, we remain seriously
concerned about whether the legislation, as drafted, will fairly compensate
mesothelioma patients and provide the best hope through research. At a
minimum, the Fund should allow seriously injured "hardship"
claimants to present evidence of their economic and medical losses and
award damages accordingly.
Dr. Harvey Pass, Co-chairman
Karmanos Cancer Institute, Michigan Dr. Robert Cameron, Co-chairman
UCLA Medical Center, California Dr. Bret Williams, MM survivor
Hillsborough, North Carolina Klaus Brauch, MM survivor
Huntington Beach, California Dr. Mike Harbut
Center for Occupational & Environmental
Medicine, Royal Oak, Michigan
Dr. Nicholas Vogelzang
Nevada Cancer Institute, Nevada Dr. Steven Albelda
University of Pennsylvania Dr. Eric Vallieres
Swedish Cancer Institute, Washington Dr. Dan Miller
Emory University, Georgia Dr. Claire Verschraegen
University of New Mexico, New Mexico
Dr. Victor Roggli
Duke University, North Carolina
Dr. Raphael Bueno
Harvard/Brigham & Women's Hospital, Boston, Massachusetts Dr. Jill Ohar
Wake Forest University Medical
Winston-Salem, North Carolina Dr. Brad Black
Libby, Montana Dr. Michele Carbone, Ph.D
University of Chicago Medical, Illinois Dr.Lu Bo
Vanderbilt Medical Center, Tennessee Dr. David Jablons
UCSF/Mt. Zion, California Dr. Alan Whitehouse
Spokane, Washington Dr. Lary Robinson
H. Lee Moffit/Tampa, Florida Dr. Joseph R. Testa, Ph.D
Fox Chase Cancer Center, Pennsylvania Dr. Gavin J. Gordon, Ph.D.
Harvard Medical School, Massachusetts Dr. Douglas Pohl
Cleveland Clinic, Florida Dr. Jim Dahlgren
UCLA, California Dr. Eugene J. Mark
Massachusetts General Hospital, Massachusetts Dr. David Egilman
Brown University, Rhode Island Dr. Hector Battifora
Arcadia, California Dr. Jacques F. Legier
Riverside Regional Medical Center
Newport News, Virginia Dr. John C. Maddox
Riverside Regional Medical Center
Newport News, Virginia Dr. Samuel P. Hammar
Bremerton, Washington Dr. Hedy Kindler
University of Chicago, Illinois Dr. Steven Hahn
University of Pennsylvania Dr. Carlos Bedrossian
Chicago, Illinois Dr. Daniel Sterman
Philadelphia, Pennsylvania Dr. Fred Garfinkel
Dr. Ronald Dodson
Dr. Arthur L. Frank
University of Texas
Drexel University School of Public Health
Philadelphia, Pennsylvania Dr. Arnold Brody, Ph.D.
Tulane University Medical School
New Orleans, Louisiana Dr. Samuel G. Armato III, Ph.D. University of Chicago, Illinois
As of press time, over
11,873 U.S. citizens, the majority of which are asbestos cancer patients or survivors,
have petitioned their government for the creation of a comprehensive mesothelioma
research and treatment program. See www.marf.org
Terry McCann of Dana Point, California won the Gold Medal at the 1960 Olympics
in Rome. He is a member of four different wrestling Halls of Fame and
before he was diagnosed with pleural mesothelioma in 2005 was an avid surfer.
Section 131(b)(3) of SB 852 allows the administrator to pay more (without
stating how much more) to a younger patient (i.e., younger than age 51)
with minor children, but only so long as she can balance the books by
deducting money from an award to an older patient (i.e. older than age
65). At the end of the day, any surplus awards must remain "cost-neutral."
Numerous questions arise. Who decided that when a mother reaches 51 years
of age the quality of her medical, physical, emotional and financial hardship
no longer warranted due process? Who decided that when a father reached
65 years of age he would be fair game to have his award reduced? Is the
Administrator empowered to assess the needs of a mesothelioma patient
65 years of age or older and unilaterally decrease the award? Or do the
bill drafters expect the "older" patient to voluntarily request
a lower award? SB 852 provides no guidance on the evidentiary thresholds
a "younger" patient must meet to secure a higher award.
We are deeply concerned that many married patients with young children
may opt to forego aggressive and expensive treatments simply because the
costs of doing so will deplete the size of his survivor's inheritance.
In this sense, the caps may actually discourage the pursuit of life-extending
SB 852 forces living mesothelioma patients who have filed civil claimants,
regardless of the date of their trial, to stay their litigation for at
least 9 months. If after 9 months the new federal bureaucracy is not able
to pay the claim, and the patient has not yet died, then the latter may
refile his lawsuit, starting all over again, but her settlement would
be capped at 150% of $1.1 million, with a set off for earlier settlements.
If the patient dies, the decedent's estate would have to wait two
years before they could return to court. During the 9-month stay on litigation,
mesothelioma patients cannot preserve their testimony. Since the median
survival for mesothelioma patients who are not candidates for aggressive
treatment is 9 months, the overwhelming majority of mesothelioma claimants
with civil lawsuits pending at the time the bill becomes law will likely
die during the stay.
SB 852 directs the NIH to budget $12 million per year towards the mesothelioma
research program (NMRTP). We remain concerned that the program may merely
become another federal "unfunded mandate." The Labor Health
Human Services (LHHS) in the House has already passed its appropriations
bill with no provision for funding the NMRTP. Senator Specter, who is
chairman of Senate LHHS, to date has not included funding for NMRTP in
the draft appropriations bill for the NIH. See "Sen. Specter Breaks
Promise to Mesothelioma Patient and Research Community," June 29,
The Mesothelioma Applied Research Foundation, www.marf.org, estimates there
are 5,800 mesothelioma patients struggling to survive now in the U.S.
According to MARF, between 2,500 and 4,000 Americans are diagnosed every
year with mesothelioma and the cancer's incidence is not anticipated
to peak for another 10 to 15 years. The average survival for patients
who are not eligible for surgery is less than 12 months. Mesothelioma
accounts for about 1% of all cancer deaths in the U.S.
Surgery for pleural mesothelioma presents two options. In the pleurectomy
/ decortication (P/D) procedure, the surgeon attempts to preserve the
lung while removing the lining of the chest cavity (the pleura) and all
visible tumors. The more radical extra pleural pneumonectomy (EPP) involves
removal of the entire affected lung with the pleural lining; any involved
areas of pericardium and diaphragm are also removed and are reconstructed
from artificial material. Either of these surgeries requires at least
4 to 6 hours. The incision extends from the back, underneath the shoulder
blade, and around the front nearly to the center of the chest.
To illustrate this point further, we present more detailed information
about patient "KAB." This 51-year-old man was diagnosed with
right-sided epithelial pleural mesothelioma at an early stage. He was
therefore a good candidate for aggressive treatment, including radical
surgery. KAB resided in California, but he sought treatment at a specialized
center in Boston. His costs to date, not including travel, lodging, rehabilitation,
and over-the-counter medication and supplements, add up to $1,243,237.
Now, more than four years out from surgery, he continues to accumulate
medical expenses. His periodic diagnostic testing includes regular PET
scans, not covered by most insurance. And if his tumor recurs, Patient
KAB will again be forced to pursue aggressive, expensive treatment options.
Capping awards at a specific number for specific disease categories is
bureaucratically efficient, but it's not fair. The government acknowledged
this truth when it set up the September 11th Victim Compensation Fund.
As with asbestos, the Government's objective was to provide speedy
compensation in place of highly contentious, costly and high-risk third
party litigation. In a relatively short period of time, the government
set up criteria for individually weighing the damages of each 9/11 victim.
They looked at such factors as age, marital status, future earnings capacity,
the number of dependent children, life insurance, and other factors (such
as medical bills for living claimants), and attempted to tailor the award
to the specific facts. In about three years, the Government paid out $7
billion to over 5,000 living and deceased claimants, which included rescue
workers, office workers and plane passengers. The average payout for a
death claim was about $2 million, ranging from $250,000 to over $7 million.
Injured claimants received awards ranging from $250,000 to $8.6 million
for a woman badly injured by falling debris, who presumably would require
a life-time of medical care. Our Federal Government lauded the program
as a great success.