Dear Judge Wolin:
As members of MARF's Board of Directors and Science Advisory Board,
we write to ask you to answer Congressman Vento's call and join us
now in support of MARF's life-saving work. We have vision and energy,
and we are becoming a powerful force in raising awareness, raising research
funding, and finding a cure for the disease.
We understand that you will be deciding important issues regarding the
allocation of the assets of the various debtors above among claimants
who have asserted an asbestos-related disease. While we are not "party"
to the litigation, we come to you as doctors and scientists who treat
patients with malignant mesothelioma on a daily basis, and wish to offer
you our medical and scientific expertise under Federal Rule of Evidence 706.
We are each members of the Mesothelioma Applied Research Foundation, Inc.
(MARF), a 501 (c)(3) not-for-profit charity. MARF is the country's
only nonprofit organization dedicated to eradicating mesothelioma through
funding the research necessary to develop effective treatments for this
asbestos cancer. We are intimately familiar with the financial, medical,
physical and psychological hardships to which mesothelioma patients and
their families are subjected. Should the Court desire our assistance --
as you consider a formula for compensating permanently disabled cancer claimants
vis a vis unimpaired claimants and partially impaired claimants -- we would offer,
and expand upon, the following facts and opinions regarding mesothelioma
Mesothelioma Is Extremely Rare
Mesothelioma is a cancer, or malignant tumor, arising from mesothelial
cells, which are found primarily in the linings of the lung, abdomen,
and heart. While it is scientifically unquestionable that asbestos causes
mesothelioma, it does so relatively infrequently, and it is impossible
at this time to predict who will develop asbestos-related malignancy.
Studies of even the categorically most heavily exposed population (i.e.,
insulators), put the incidence of mesothelioma within that cohort as only
between 5% and 10%. Unlike lung cancer, smoking does not contribute to
Precise estimates of mesothelioma's frequency are nearly impossible
to calculate, since no national registry has yet been established, but
public health figures report it occurring in about 2,500 individuals in
the United States per year. For comparison, the national incidence of
breast cancer is about 200,000 women per year, and of prostate cancer,
about 190,000 men per year. The incidence of mesothelioma is rising, but
given the asbestos mitigation efforts begun about 20 to 25 years ago in
this country, the disease incidence is expected to peak sometime in the
next 15 to 25 years, and to decline sharply thereafter.
Mesothelioma Can Be Clinically Defined and Objectively Diagnosed
Diagnosis of mesothelioma is difficult, but -- especially with advances
made in the past few years -- the disease can be diagnosed objectively
and with certainty in about 95% of cases. The disease presents typically
with certain clinical symptoms: pleural effusion, that is, build-up of
fluid in the space surrounding the lung (i.e. the pleura); shortness of
breath; chest pain, often severe enough to require narcotics; and abdominal
distention due to involvement of the abdomen with the development of abdominal
fluid (ascites). With time, the liquid disease can be accompanied by bulky,
locally invasive disease which can encase the lung, diaphragm (the muscle
of respiration) and/or pericardium (the heart sac) as a tumor rind that
may become several centimeters thick. Other symptoms include cough, rapid
weight loss, fever and fatigue.
Diagnostic imaging using x-ray, CT scan, MRI and most recently, PET scans
can help reveal features that are specific to the tumor. Finally, pathological
analysis will confirm the diagnosis, through the presence or absence of
specific markers in tissue taken from the tumor.
Of All Asbestos-Related Conditions, Mesothelioma Is Particularly Horrendous
Prognosis is grim.
Once the mesothelioma diagnosis is made, prognosis is extremely grim. A
fatal outcome is considered "uniform" and "nearly inevitable."
Median survivals are in the range of only 6 to 18 months, and many afflicted
patients are given only supportive treatment which attempts to control
symptoms of pain or shortness of breath. An astounding 50% of the patients
who receive only supportive care will die of mesothelioma within 6 to
8 months. By definition, mesothelioma is a permanent disability that results in death.
Patients face overwhelming nihilism.
Making matters worse, the rarity, intractable symptoms, and dismal outcome
of the disease have for the most part led to a sense of frustration and
nihilism in the medical and surgical community. Few oncologists have been
willing to treat the disease, with most simply making an immediate and
hope-depriving recommendation of hospice care only. And the disease has
been an orphan among other cancers with regard to research efforts and
funding. Proportionately, the amount of funding allocated to mesothelioma
research is a small fraction of that of other diseases such as AIDs or
breast and prostate cancer.
As a result of this decades-long scientific and medical nihilism, only
a handful of doctors currently have the expertise to offer the newest
treatment options. Given the rarity of the disease, the likelihood is
high that a patient's physician has never previously seen a mesothelioma
patient. Physicians who do not specialize in mesothelioma treatment but
practice in areas where former asbestos workers are concentrated may still
only encounter new cases of mesothelioma but once 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, with the atrocious outcomes described above. Faced with this overwhelming
nihilism, 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 to die."
Treatment is extremely difficult and expensive.
Other patients will seek treatment at the handful of medical schools, teaching
hospitals and cancer centers spread throughout the country which have
developed specialization in mesothelioma care. Few of these patients will
be candidates for treatment, since more often than not the disease is
not diagnosed until after there has been lymph node involvement, progression
of tumor bulk or extensive metastases. For those patients who are candidates,
the best treatment approach is generally considered a tri-modal therapy
consisting of surgery to locally control the disease, chemotherapy or
other novel drug treatment, and possibly radiation.
Surgery for pleural mesothelioma presents two options. In the pleurectomy
/ decortication (P/D) the surgeon attempts to preserve the lung while
removing all visible tumor from the chest wall, diaphragm, mediastinum
and the surface of the lung. In the extrapleural pneumonectomy (EPP),
the entire affected lung is removed, along with the involved pericardium
and diaphragm. Either of these surgeries will require 4 to 6 hours, as
an incision is made from the back, underneath the scapula and all the
way to the front nearly to the center of the chest; the pleurectomy or
pneumonectomy is performed; the diaphragm and pericardium are reconstructed
from Gortex; and the chest is then closed.
These are huge operations, performed routinely by only a handful of surgical
specialists in the United States. The unfortunate patients and desperate
families must contend with geographical barriers that force them to find
the closest institution 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 only another layer
of financial desperation. Then 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
These financial and psychological burdens are only a prelude to the physical
pain which follows the attempt to treat the disease through a chest or
abdominal operation. Rib resection, muscle cutting and spreading, and
placement of tubes in cavities all lead to postoperative discomfort. This
fortunately is ameliorated with the best postoperative analgesia using
epidural catheters, but once the catheter is removed, the patient must
use narcotics. The narcotics are only partially effective in reducing
the pain, and have other side effects including constipation, nausea,
lack of appetite, and possible hallucinations. True, these are all reversible
problems and eventually the patient may start to thrive. If so, he or
she will then face the extraordinary expenses and complications of postoperative
therapies including chemotherapy and radiation. We cannot forget that
the loss of lung tissue is not reversible, and the patient's function-state
after these operations may be the same as before the operation, but rarely
is improved. The postoperative mortality rate for mesothelioma patients
who undergo the EPP even at the best hospitals is about 3.8%, and the
postoperative recovery period is a minimum of 4 to 6 weeks.
As stated above, recovery from this invasive, complex thoracic cavity surgery
is extremely painful. The patient is usually kept virtually home-bound,
and unable to work and without income (except perhaps disability), for
many months afterward. With the surgery, expensive pain medications, and
then weeks to months of chemotherapy or other novel drug treatment and
radiation, a patient's medical expenses will commonly exceed two hundred
thousand dollars, and can consume an entire life's savings.
Even the best current treatments are only minimally effective.
While the cutting-edge treatments offered at the relatively few centers
specializing in mesothelioma care can effectively extend the patient's
life, this benefit is tragically limited by a number of factors. First,
there is a very long latency period (15 to 50 years) between exposure
and development of the tumor, and thus typically patients are in their
50's, 60's or 70's. Other health factors in this largely elderly
patient population frequently limit their eligibility for, or the effectiveness
of, advanced treatments.
Second, the onset of mesothelioma is insidious, and the disease is usually
far advanced when symptoms appear. Even then, obtaining a diagnosis can
be delayed depending on the compulsion of the physician seeing the patient.
Symptoms commonly precede the diagnosis by six months or more. As a result,
most mesothelioma victims are diagnosed in later stages when treatments
are limited or useless.
Third, even the best current options do not offer a cure, and the tumor
virtually always recurs. Given the diffuse involvement of the pleura or
peritoneum, irradiation or surgical removal of the entire tumor is almost
never accomplished. Chemotherapy using most agents alone or in combination
has had little effect. The best response rates fall in the range of only
30%, and these measure "response" as merely some regression
of the tumor. Even where there is some response to chemotherapy, the tumor
typically begins to escape the response and the drug eventually ceases
to have any effect.
Mesothelioma patients suffer horribly.
Hence, the horrible conclusion that, until there is major research funding
and significant treatment breakthroughs are made, mesothelioma remains
"uniformly fatal." In the meantime, the tumor is singularly
horrible in terms of the pain it causes, its progression, and its manner
of causing death. Even initially, the chest pain of pleural mesothelioma
is often severe enough to require narcotics. As the tumor progresses,
its increasing bulk replaces the effusive component of the lungs, causing
progressive respiratory compromise. The patient cannot take a deep breath
due to pain, and even if he could, his pulmonary reserve is greatly diminished
because the involved lung is crushed by the weight of massive tumor or
fluid. The unrelenting pain as the tumor invades the chest wall, coupled
sometimes with the tumor's compression of the esophagus, leads to
an inability to eat or swallow. Direct involvement of the epicardium or
the pressure from fluid build-up on the heart will eventually erode cardiac
function, causing heart failure, cardiac constriction, or uncontrollable
Growth of the tumor in the abdomen -- either from primary peritoneal mesothelioma,
or secondarily, when the pleural tumor pushes through the diaphragm --
will lead to abdominal distention, and eventual death through intestinal
obstruction and wasting.
The physical, medical, emotional and financial hardship, and eventual loss
of life suffered by mesothelioma patients and their families is without
parallel among the diseases attributed to asbestos exposure. We recommend
that this extreme suffering and loss be recognized in these proceedings
as the Court considers a formula for compensating unimpaired claimants,
partially impaired claimants, and permanently disabled cancer claimants.
Although there is no universal standard for measuring "suffering,"
we submit that on a scale of 0 to 100, mesothelioma patients -- who experience
severe suffering not only of a physical nature but also from emotional
trauma due to inadequate and uncertain therapies -- typically are at the
highest range of this scale. We are not certain whether pleural disease
claimants without lung impairment -- proved objectively via spirometry,
lung volume measurements and diffusion tests -- rate at all.
Each of us would be willing to assist the Court as an expert witness in
this regard. We are attaching MARF's informational brochure, as well
as an article recently published on Malignant Pleural Mesothelioma by
Dr. Harvey Pass, who is Chairman of MARF's Science Advisory Board.
Upon request, we will furnish individual curriculum vitae. We are hopeful
that the Court will reach a compensation formula that marches in step
with the medical and scientific evidence.
|Harvey Pass, M.D.
||Robert B. Cameron, M.D.
||Robert Ginsberg, M.D.
|Brian Loggie, M.D.
||Dan Miller, M.D.
||Raphael Bueno, M.D.
|Lary A. Robinson, M.D.
||Victor Roggli, M.D.
||W. Roy Smythe, M.D.
|Joseph R. Testa, Ph.D.
||Eric Vallieres, M.D.
||Robert N. Taub, M.D.
|Claire Verschraegen, M.D.
||Nicholas J. Vogelzang, M.D.
||Michael Harbut, M.D.