Mesothelioma Empowerment

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

For the Sake of Our Heroes -- A Mesothelioma Medical Research Program

A Grim Story Destined to Recur Until We Stop It

Asbestos' signature cancer is mesothelioma, one of the most lethal and painful of all cancers. The tumor was described in the medical literature as early as the 1930's, and its link to asbestos confirmed by 1964. Yet, the need for research to develop treatments for mesothelioma was overlooked for decades.

In 1979, when Steve McQueen was diagnosed with mesothelioma, his doctors had no advice other than to "go home and tidy up your affairs." Desperate, he turned to futile "alternative" treatments in Mexico. 20 years later, effective treatment was just as lacking. Admiral Elmo Zumwalt, Jr., hailed as "the Navy's most popular leader since World War II," received the best medical treatment available, but succumbed to mesothelioma in 2000 within four months of his diagnosis. The Honorable Bruce Vento, who served this country for 24 years in the United States Congress, was diagnosed in January 2000, at just 59 years old. Over 30 years earlier, while earning his teaching degree, he had held a summer job in a local factory that had asbestos-insulated boilers. He endured radical surgery, radiation and chemotherapy, but died in just nine months.

For thousands of other Americans diagnosed each year, prognosis is just as grim, and half of them live less than 14 months. In the pain it causes, its progression, and its manner of causing death, mesothelioma is particularly horrible. The patient cannot take a deep breath due to pain, and even if he could, his lung capacity is severely restricted because the involved lung is crushed by the weight of massive tumor or fluid. Unrelenting pain as the tumor invades the chest wall, coupled sometimes with the tumor's compression of the esophagus, lead to an inability to swallow. Direct involvement of the heart sac or the pressure from fluid build-up on the heart will eventually cause heart failure. Growth of the tumor in the abdomen will lead to abdominal distention, and eventual death through intestinal obstruction and wasting.

For these reasons, experts familiar with mesothelioma consider the physical and emotional suffering it causes to occupy the highest range on any scale of human suffering.

We Have The Resources; It Is The National Commitment That Is Needed

Since the first asbestos lawsuits were filed in the 1960's, about 56 billion dollars have changed hands, 37% to defense lawyers, experts, and staff; 36% to plaintiffs; and 25% to plaintiffs' lawyers. The Rand Institute for Civil Justice projects asbestos litigation will ultimately cost corporate America between $200 billion and $275 billion. Despite those staggering numbers - and the vast human suffering and drain on the economy which they represent - almost none of these resources are being invested in eradicating the source of the misery in the first place.

In 2001, the National Cancer Institute, with a budget of over $3 billion, allocated less than $1.7 million for research on mesothelioma. This is a fraction of what most other cancers received, even when adjusted by number of fatalities.

The Department of Defense is also a major source of federal cancer research funding. Congress has appropriated more than $1.2 billion to fund peer-reviewed breast cancer research through the DoD, and $310 million for the DoD's Prostate Cancer Research Program. The DoD also conducts a research program for ovarian cancer, and as recently as 2002, established Congressionally-directed research programs for prion disease, tuberous sclerosis and chronic myelogenous leukemia. The DoD currently has no program for mesothelioma research funding, even though many mesothelioma victims were exposed in the Navy or naval shipyards.

As a result of such federal funding, major advances have been made in breast and prostate cancer, and these and many diseases considered uniformly fatal just two decades ago can now be successfully treated. It is time, finally, for a similar commitment to treating mesothelioma.

Now is the Time

Congress now has an historic opportunity to address this national tragedy. The two asbestos-related bills in the Senate focus attention on asbestos issues as never before.

The first, SB 1125 - a compensation bill which would replace the current litigation system with a capped trust fund, has sparked widespread interest and debate. Corporations are spending $1 million a month to lobby Congress in support of this bill. Trial lawyers, unions and other opponents of the bill are spending millions more against it.

In the debate, words like "fatal" and "incurable" are used to describe mesothelioma. But, while the trust is proposed to be funded with at least $108 billion, and billions more are being consumed meanwhile by asbestos litigation and lobbying, not a dime is proposed for research on actually curing mesothelioma, or expanding treatment options. Mesothelioma thus remains "incurable" only because of our apathy towards actually curing it.

The second bill comes in here. The Ban Asbestos in America Act would finally ban all commercial and consumer uses of asbestos. But the Act also recognizes that even after asbestos is totally banned, mesothelioma will persist for decades because of the millions of Americans already exposed but still within the latency of the disease, and the millions more who will continue to be exposed to the asbestos still contaminating our buildings, machinery and appliances. Therefore, the Act would also, for the first time ever, compel the federal government to fund mesothelioma research and treatment programs. This is a critical first step. No matter what side one takes on the debate over the asbestos litigation problem, everyone should agree that the human death and misery caused by mesothelioma is a problem more gravely unjust and even more in need of Congressional assistance.

In fact, there has never been a better opportunity for Congress to address this problem. For the first time in the U.S. history of asbestos and asbestos litigation, the private sector is uniting to cure mesothelioma. In 1999, a group of doctors, patients, lawyers and company representatives acknowledged that too much focus has been on fixing blame, and not enough on fixing the problem. They formed the Mesothelioma Applied Research Foundation (MARF), the national nonprofit whose mission is to eradicate mesothelioma as a life ending disease. Funded entirely by private sources, including parties on both sides of asbestos litigation and thousands of friends and family of mesothelioma patients, MARF has now awarded over $1,000,000 in peer-reviewed research grants to advance mesothelioma treatment.

MARF's seed-money grants are stimulating the much-needed smaller-scale, highly experimental projects which, once successful, become ideal candidates for larger federal funding. Thus, through MARF, the effort to fund mesothelioma research and develop a cure is receiving a crucial kick-start. The time is right for the federal government to partner in this effort.

A second historical development also makes this a critical time for the government to commit to funding mesothelioma research. Thanks to the persistence of a small cadre of mesothelioma experts, decades of hopelessness are beginning to yield to a "cautious optimism" regarding development of effective treatments. Alimta is an example of this progress. Dr. Nicholas Vogelzang, head of the Nevada Cancer Institute and a member of MARF's Board of Directors, led the largest Phase III clinical trial ever conducted in mesothelioma, showing that patients treated with Alimta improved significantly. While this is not yet a cure, it represents real progress for mesothelioma patients, and demonstrates the potential for further breakthroughs if the government joins in and applies the necessary resources.

Indeed, these breakthroughs likely will not be limited to mesothelioma. Funding mesothelioma research has broad applicability to cancer generally, because this tumor is a microcosm of many other solid tumors. In fact, since mesothelioma is more active and grows faster than most other tumors, it can actually serve as a better, more effective subject of research and experimentation, even with regard to improving treatments for other cancers.

Therefore, MARF recommends that Congress appropriate $28 million to create a National Mesothelioma Research and Treatment Program. For the government to step up now and partner in the development of a cure for mesothelioma is the proper way to honor the sacrifice and public service of heroes like Admiral Zumwalt and Congressman Vento. It is the just responsibility owed to the thousands of unsung heroes now battling mesothelioma. And it is a public health necessity with regard to the millions of Americans who have been and continue to be exposed to asbestos and are at risk to develop mesothelioma in the future.