Time Ripe for Government-Funded Effort at Mesothelioma Cure

Roger G. Worthington

About the Author
Roger G. Worthington is a plaintiff's advocate who represents mesothelioma patients and their families. He is also the founder of The Mesothelioma Applied Research Foundation (MARF), whose mission, in cooperation with all interested parties, is to eradicate mesothelioma as a life-ending disease. See www.marf.org.

Mesothelioma is now a household word in this country.

Increasingly common television ads flash the word in large block letters to bring new cases to plaintiffs' firms. New Yorkers worry that the attack on the Twin Towers, which released untold tons of asbestos into the air, will raise the 9/11 death toll 15 years or more later with a ripple of mesotheliomas. Manufacturing and industry lobbyists, long stymied in their efforts to obtain asbestos tort reform legislation, increasingly trumpet the argument that lawsuits by unimpaired claimants should be stemmed and an increasingly limited supply of funds safeguarded to compensate the most serious cases, most notably, mesothelioma claims.

Lawyers, lobbyists, and doctors will gravely describe the cancer as "incurable." And by doing so, without investing a fraction of the billions of dollars that have been spent on litigation since the 1960s in a cure, we as a nation may be sealing the fate of all present and future mesothelioma patients. The disease will remain incurable if we lack the will and resolve to appropriate the money to find a cure, just as we have done with many other forms of cancer.

Admiral Elmo Zumwalt
Diagnosed October, 1999
Deceased January 2, 2000

We must change the doom and gloom. And we can. Two asbestos bills will soon be introduced in Congress, one dealing with tort reform and the other with banning asbestos. (The latter also provides for minimal funding for mesothelioma treatment at specified centers, and an unspecified amount for funding research). We need to ensure that the final bill that reaches the President's desk contains language that finally begins to fix the root of the asbestos cancer problem by funding basic and applied research.

Every year, approximately 2,500 Americans are diagnosed with malignant mesothelioma (MM). The cancer has been known in this country since the late 1940s. The number of mesothelioma cases in the United States is expected to peak in the next 10 to 15 years and is not expected to retreat to background levels of incidence in the U.S. until 2025.

MM is invariably fatal with no known confirmed cure. Death can occur suddenly from complications, opportunistic infections or unexpected rapid tumor progression. Those who try surgical resection of the tumor face terrible and prolonged post-surgical pain and a months-long recovery in which they are virtually homebound and unable to work. With the surgery, expensive pain medications, chemotherapy and/or radiation therapy, a patient's medical expenses will commonly exceed $200,000, and can consume a life's savings.

Most patients will die of symptoms of local disease. With pleural MM, the increasing tumor bulk replaces the effusive component, causing progressive respiratory compromise. The unrelenting chest pain requiring narcotics leads to an inability to eat and occasionally dysphagia from tumor compression of the esophagus. Direct involvement of the pericardium can lead to pericardial effusion or myocardial dysfunction with arrhythmias.

Rodney Steenbergen
1954-1973 Machinist Mate
Diagnosed October, 2000
Deceased December 1, 2002

The first lawsuits against the asbestos companies were filed in the 1960s. The government began regulating the use of asbestos in 1972, and banned asbestos from several thermal and refractory insulation products in 1973. The EPA attempted to ban most of the asbestos products remaining in 1989, but the ban was overturned in court in 1991, and the former Bush Administration did not appeal.

Over the years, about $56 billion dollars have changed hands - from the asbestos companies and their insurers, to the lawyers and their experts, and finally to the victims and their families

With the number of mesothelioma cases in the U.S. expected to increase for the next 10 to 15 years, the Rand Institute for Civil Justice projects asbestos litigation will ultimately cost corporate America between $200 billion and $275 billion. Despite those staggering numbers, there is at present no mandate imposed by the courts or Congress to divert a nickel to eradicating the source of the misery in the first place.

A Hazard of Government Service.

Many MM patients belong to what's been reverently described as "The Greatest Generation," exposed to asbestos while defending our borders and maintaining our fleet. Others were exposed when they got up and went to work each day to make our steel and build our refineries, powerhouses, skyscrapers, schools and churches.

Roughly 30 percent of the MM patients diagnosed in the United States served in the U.S. Navy, Merchant Marines, or as civilians in Navy shipyards, and it is beyond cavil that they suffer a "service-connected" disease and disability.

Paul Coyle
1960-1963 Boiler Tender
Diagnosed February, 2000
Deceased May 13, 2000

What action to remedy the curse of mesothelioma has the Federal Government taken? The Department of Veterans Affairs does not have any meaningful treatment protocol. Neither the National Cancer Institute (NCI) nor the Department of Defense (DOD) has any research programs designed to find a cure or a standard of care.

In 2001, the NCI, the single largest provider of cancer research money with a budget of more than $3 billion, allocated just over $1.6 million for research on mesothelioma, mainly for clinical trials. This is a small fraction of what most other cancers received, even when adjusted by number of fatalities (See Figure 1).

Besides the NCI, another major source of cancer research funding is the DOD. In 1992, thanks to a $25 million congressional appropriation for breast cancer screening for military women and family members, the DOD created the Breast Cancer Research Program (BCRP). In 2000, Congress appropriated another $175 million to this laudable program, and the same amount in 2001. From 1992 to 2001, Congress has appropriated more than $1.2 billion to fund peer-reviewed breast cancer research through the BCRP.

Similarly, the DOD supports a Prostate Cancer Research Program (PCRP), which was established in 1997 with a $45 million congressional appropriation. By 2001, Congress had earmarked $310 million to fund peer-reviewed prostate cancer research through the PCRP.

Time for Congress to Put a Spotlight on Need for Cure.

Congress has an historic opportunity to correct past mistakes and help MM patients and their families. In early 2003, Congress is expected to consider two important bills, one dealing with compensation, and the other calling for a complete ban on asbestos.

Figure 1

The compensation bill has sparked widespread public interest. This "tort reform" bill would allow only MM, cancer and seriously-impaired asbestos claimants to file lawsuits, and force the "unimpaired" claimants onto a waiting list providing exit to the tort system only if they become seriously injured. The bill responds to the rash of bankruptcy filings over the past few years. Most agree these bankruptcies were caused by the explosion in claims filed by a relative handful of law firms on behalf of people with asbestos exposure who are not yet sick, and likely never will be sick. The bill is designed to keep afloat the remaining defendant companies so they can compensate those with the most grievous injuries.

Over the last year, a mounting number of prominent American newspapers published editorials on what the Supreme Court called the "elephantine mass" of asbestos litigation. In the first two months of 2002, lobbyists for the insurers reported spending $2 million to curry favor in Congress for the asbestos tort reform bill, an amount roughly 25 percent greater than the entire NCI budget for MM research in 2001. Add this to the untold millions spent in the years before by lobbyists for the National Association of Manufacturers, the American Insurance Association, the American Trial Lawyers Association and others pushing for and against laws limiting asbestos litigation. In the next few months millions more will be spent by lobbyists on all sides of the debate.

Before, no one lobbied for spending a small portion of the billions of dollars asbestos litigation will consume towards basic and applied research for expanding MM's treatment options, or a cure. Because of a sense of nihilism regarding the incurability of MM, and because of our complacency and timidity in committing to a cure for the disease, its incurability has become a fait accompli.

Now, at last, the tide is turning.

Mac Fournier
1951-1955 Boiler Tender
Diagnosed November, 2000
Deceased February 27, 2001

The Ban Asbestos in America Act, which was introduced in June by Senator Patty Murray (D-WA), is a giant and long overdue step in the right direction in funding MM research at the federal level. The Act contains three important "first step" provisions which would (1) for the first time ever, compel the National Insitute of Health to fund research on asbestos-related cancers, (2) fund a registry for mesothelioma incidence, and (3) allocate about $4 million per year for the next few years for MM treatment programs at seven renowned cancer centers. As the Act's title indicates, the bill would ban all commercial uses of asbestos -something most Americans thought had already happened years ago.

After years of neglect, just getting Congress to talk about the ravages of this deadly cancer on The Greatest Generation is a victory of sorts. No matter what side of the fence you may be on over the highly charged compensation debate, everyone should agree that the time has come for this country to take seriously its responsibility to fund research on a cure for MM at a level that is proportionate to other cancers and diseases.

But these are just first steps, and more must be done. To find that Achilles heel and build a weapon that will knock the tumor out, or at least delay its progression, we need to design and fund collaborative clinical trials that bring the best and brightest scientists, geneticists, surgeons and oncologists together. We need data rather than conjecture, organization rather than chaos.

We need sufficient funds for peer-reviewed research on basic tumor genesis. How can we turn off or turn on the right switches at the genetic level to destroy the immortalized malignant mesothelioma cell? How can we prevent the tumor from arising in asbestos-exposed populations who are bumping up against their latency period, a group that includes millions of young adults?

An Epidemic That Will Not Fade Away Needs Action Now.

On October 27, 2000, the Hon. Bruce Vento, who served his country for 24 years in the U.S. Congress, passed away from MM, despite receiving the best treatment available. Before MM robbed us of this courageous leader, Congressman Vento pleaded to his colleagues in a videotaped speech

Rep. Bruce Vento
Diagnosed January, 2000
Deceased October 10, 2000

Our great country has not applied its vast resources to curing mesothelioma. Billions have been spent on the litigation. But a pittance has been spent on finding a cure. Asbestos companies have done little, though finding a cure is in their interest. The government hasn't stepped up, perhaps because we believe that the disease will simply fade away . . .

As Congressman Vento alluded, the disease won't simply "fade away" with the death of the estimated 27 million members of "The Greatest Generation" who helped build this country and occupationally inhaled asbestos every day. Today we are seeing more and more young adults diagnosed with the deadly disease, children whose only exposure came when they hugged their asbestos-contaminated fathers when they came home from the shipyard. And we continue to see a small percentage of young Americans who are diagnosed without any clear exposure to asbestos at all, except perhaps on an "environmental" or "bystander" basis at public schools built before 1980.

The odds are we will see firefighters, policemen or other heroes of New York City's 911 tragedy who were exposed to asbestos at Ground Zero develop mesothelioma. What hope will we offer them? Who will step up to honor the sacrifice and public service of heroes like Congressman Vento? Who will advocate on behalf of the unsung heroes, who have served their country proudly, but now must hold on and stay alive long enough for their government to finally take responsibility for their care? Who will fund the research that will generate the treatments that will grant them the pride and privilege of attending their grandchildren's high school graduations? We urge you, as a first step, to support the Ban Asbestos in America Act. Back in 1971, with the creation of the National Cancer Act, Congress launched the "War on Cancer." Our chief weapon was money. Since then, we have invested billions of dollars in fighting all sorts of cancer, with profound success. But we have not funded mesothelioma at a level that is proportionate to other cancers.

Doug Marr
1961-1965 Fireman, Boiler Tender
Diagnosed April 2002

We urge Congress to take the same kind of action it took with respect to curing prostate and breast cancer through the DOD. Congress launched the breast cancer and prostate cancer research programs for $25 million (in 1992 dollars) and $45 million, respectively. Congress should also appropriate $20 million to create a Mesothelioma Medical Research Program through the DOD. Further, we ask that Congress appropriate $5 million for the creation of a mesothelioma registry/database. The Center for Disease Control (CDC) does not even maintain a registry for mesothelioma as a reportable disease, although it has been called an "epidemic." Most European nations have mesothelioma registries.

As Congress considers various reforms to the current asbestos tort litigation, it should also consider creative solutions to ensure that, of the billions spent on litigation, a fraction is invested in finding a cure. Mechanisms include a tax on settlements to be paid by industry and a transfer of a portion of any punitive damage award that is collected to a trust that will award grants to meritorious researchers after a rigorous peer review.

All tumors deserve eradication, but mesothelioma is particularly heinous. Mesothelioma is unmercifully cruel in terms of pain as it wraps around a lung or other organ and squeezes its victims to death. So many died deserving so much better, poisoned while serving their country in ships and shipyards and other places vital to the nation. We can, and we must, do better.