WSJ Credits MARF for Funding Orphan Disease

Chris Hahn of MARF is quoted but in a way that is disappointing. According to Chris "I was commenting in the context of a different angle I was urging the reporter to pursue: How immense the economics behind mesothelioma are, and the contrast between the resources being put in to litigation by both sides (including as one example plaintiffs' the Mesothelioma Applied Research Foundation ( www.marf.org ), the main private foundation for the disease."

Lawyers Bid Up Value of Web-Search Ads

By CARL BIALIK

THE WALL STREET JOURNAL

April 8, 2004

Hundreds of millions of dollars each year is paid out from asbestos makers to victims of mesothelioma. But far less is spent on research.

From 2000 through last year, the National Cancer Institute spent $8.4 million on mesothelioma research, less than a tenth of one percent of the federal agency's $15.83 billion spent on all cancer research. Each year, about 1.3 million Americans are diagnosed with some form of cancer; mesothelioma is among the most lethal types.

"We're an order of magnitude or two below what other cancers are receiving," says Chris Hahn, executive director of the Mesothelioma Applied Research Foundation, the main private foundation for the disease. "It's a very underfunded disease," says David Sugarbaker, professor of surgery at Harvard Medical School in Cambridge, Mass., and chief of thoracic surgery at Brigham and Women's Hospital in Boston.

For its part, the NCI says that budgets for a single cancer can be misleading, since basic science and clinical research on other cancers can have broader value. "There is, consequently, no 'right' amount of money, percentage of the budget, or number of projects for any disease," says an NCI spokeswoman.

Advocates suggest several reasons for the scarce funding. The disease is rare, which makes it hard to find enough patients in a given area to mount clinical trials. Also, sufferers -- the most potent constituency for rallying funding -- usually die within a year of being diagnosed. "It's hard to lobby hard when you're not here," says Dr. Sugarbaker. Adds Mr. Hahn, "It is kind of an orphan disease that gets overlooked."

Mr. Hahn, whose foundation was founded by mesothelioma attorney Roger Worthington, credits Mr. Worthington and several other plaintiffs lawyers for contributing to his foundation, but he adds, "It's extremely frustrating that billions of dollars are changing hands in mesothelioma litigation compared to the minute size of our budget." He has called upon asbestos makers and other plaintiffs lawyers to contribute to the foundation, and has gained some traction: The foundation has handed out $1.3 million in research funds since its formation in 1999.

Other nonprofits chip in. Of the American Cancer Society's $364 million in current grants, roughly $1 million is funding two mesothelioma grants.

Mesothelioma isn't going away. Even though greater awareness of asbestos has meant fewer workers are being exposed to high levels of the carcinogen, mesothelioma incidence rates have held steady -- at between 2,500 and 3,000 per year for the past decade, according to the National Cancer Institute -- and experts expect them to remain so for at least the next decade. It can take 30 to 40 years from exposure to disease, and many sufferers had very light asbestos exposure. Furthermore, some doctors worry that asbestos present in the dust cloud in New York City following the Sept. 11, 2001, terrorist attacks will lead to cases of the disease in rescuers and nearby residents.

Despite the disease's deadliness, researchers cite some promising new options for sufferers. Radical surgery pioneered at Brigham and Women's Hospital in Boston that involves removing the entire affected lung has cured the cancer in some cases and kept patients who had the surgery six or seven years ago alive and cancer-free today. At the Roswell Park Cancer Institute, doctors are investigating ways to destroy the tumor with lasers while preserving the lung. Earlier this year, the Food and Drug Administration approved Alimta, a drug from Eli Lilly and Co. that in clinical trials reduced patients' pain and prolonged their lives by an average of three months.

Some doctors say the funding problem isn't insurmountable. "A physician interested in studying mesothelioma will find a way to get funded," says Robert Taub, director of the Mesothelioma Center at Columbia University.'

*** POSTED APRIL 13, 2004 ***