MARF Letter

Our Mission is to eradicate mesothelioma as a life-ending disease.

January 16, 2002

The Honorable Alfred M. Wolin
United States District Judge
District Court of New Jersey
Martin Luther King Federal Building and Courthouse
Room 4069
50 Walnut St.
Newark, New Jersey 07102

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 causing mesothelioma.

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 local experts.

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 heart rhythms.

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.

Sincerely yours,