Ban Asbestos Act Provides Money for Registry and Mesothelioma Treatment; 7 Hospitals to Receive $500,000 per Year; Sen. Murray T

Help is on the way!

Senator Patty Murray announced today (June 18, 2002) the Ban Asbestos In America Act, a bill which will finally outlaw asbestos products in the US and, among other things, authorize the creation of a national mesothelioma registry, as well as allocate $3.5 million annually for 4 years among seven (7) medical institutions which are renown for their expertise in treating mesothelioma patients. For a complete review of the bill, a summary of the bill, a fact sheet, pictures and updates, please visit Senator Murray's website .

The Mesothelioma Applied Research Foundation (MARF) has much to celebrate. We founded MARF in 1999 for the purpose of raising awareness of this deadly disease and the urgent need to finance basic and applied research. The Ban Asbestos in America Act (hereinafter "the Bill") takes a great step toward meeting MARF's goals. The Bill recognizes the government's critical role in studying this cancer -- which was reported in the literature as far back as the 1940's -- for the purpose of finding new and better treatment options. More importantly, it would provide federal money for research and treatment.

At the press conference, Senator Murray thanked MARF for it's help in educating her staff about this insidious cancer and the steps that need to be taken to cure it. Senator Murray invited MARF's Susan Vento to speak, as well as MARF Family Advocacy Board member Brian Harvey, a three year mesothelioma survivor (treated by MARF's Dr. Eric Vallieres of the University of Washington). Colonel Jim Zumwalt, the son of the late Admiral Elmo Zumwalt, who died from mesothelioma in January of 2000, also delivered a compelling speech in which he spoke of the patriotic duty of Americans to rally around eradicating the asbestos terror that still lurks, especially in the aftermath of the 9/11 attacks on the World Trade Center, which resulted in the release of tons of asbestos fibers over New York City.

Admiral Zumwalt's daughter, Mouzetta, like Susan Vento, is a member of MARF's Board of Directors. MARF's executive director, Chris Hahn, was also in attendance (in itself an act of bravery, as the week before he was operated on for a severely fractured collarbone).

The Bill has already attracted widespread support from Democrats. Sen. Paul Wellstone (D-Minn.), Sen. Mark Dayton (D-Minn.), Sen. Mary Cantwell (D-Wa) and Sen. Max Baucus (D-Mont.) have agreed to co-sponsor the bill. Both Senator Wellstone and Dayton spoke of their admiration and respect for the late Bruce Vento, who after serving in the House for 24 years passed away in 2000 from mesothelioma. Sen. Wellstone began his speech in support by saying that "not a day goes by that I don't talk to Bruce." The Senator has had a longstanding and deep affection for the man he calls his "mentor." Susan remembered that Sen. Wellstone would call Bruce sometimes several times a day nearly every day just to chat while Bruce was recovering from his surgery, chemotherapy and radiation.

Senator Wellstone called the bill a "huge priority." He said it was "unconscionable" that after all the years we have known that asbestos is a deadly carcinogen we still have not banned it. Most Americans, he said, would "be shocked" to learn that we had not already banned this deadly toxin, which has been known to cause disease since the early 1900s.

As Sen. Murray articulated, 20 other nations have banned asbestos, yet in the U.S last year there were approximately 13,000 metric tons worth of asbestos-containing products sold in America, including roofing shingles, gaskets, brake products, electrical insulation products and water and sewer lines.

"It's a disgrace," thundered Sen. Dayton. "This is such an obvious example of corporate greed triumphing over the greater good. We need to use our political muscle to eradicate asbestos. Bruce Vento and others like him deserved a long and happy life."

Susan Vento praised the bill as the first effort ever by the federal government to study this disease which kills roughly 3,000 Americans every year. She also noted that this was the first sincere effort by the government to fund the research necessary to find novel ways of treating the disease, which has defied the conventional "slash, burn and poison" approach. Susan talked lovingly about Bruce's determination to survive. He went to the best doctors at the Mayo Clinic (Dr. Dan Miller) and received the best available care (tri-modal therapy). Their friends liked to say that if anyone could lick this cancer, it was Bruce Vento. He was physically fit (he regularly rode his bike, swam and pushed himself to exhaustion on the stairmaster) and you could not find a more positive, hopeful patient. But, as we know, mesothelioma does not respect courage, bravery, compassion or power, and despite all of his outstanding qualities, the tumor eventually took Bruce's life.

Several newspapers reported on the press conference. Please click on any of the following:

• Vento's widow backs asbestos ban (Pioneer Press, 6/18/02)
• Bill would ban asbestos (Associated Press, 6/19/02)
• Facing tough fight, Murray offers bill to ban asbestos (Seattle Post-Intelligencer, 6/19/02)
• Wellstone, Dayton push for asbestos ban (Star Tribune, 6/19/02)

Before Bruce passed away, my wife and I attended a celebration of Bruce Vento in Washington, D.C. Speakers included Bruce Babbit, Garrison Keillor and President Bill Clinton. Earlier that day, President Clinton had happily announced the completion of the Human Genome Project. That night, standing before a packed ballroom of both Democrats and Republicans, he spoke optimistically of the day in the near future when mesothelioma would yield all of its secrets so that scientists could fashion a cure.

I wrote at the time that the speeches were compelling, and the love for Bruce was genuine, but that if we didn't mobilize our resources (like we have done for AIDs, breast cancer and other diseases), the cure would not appear magically. It would take legislation -- and thanks to Senator Murray -- mesothelioma patients will finally become a priority within the halls of power. (To read my essay of June, 2000 "A Salute to Bruce Vento and Call to Arms: Mesothelioma Will Not be Overcome by Will, Passion and Spirit Alone,")

As Susan recognized, Sen. Murray's bill is precisely the sort of action asbestos cancer patients need. Mesothelioma patients don't need more speeches, they need resources. They need access to hospitals which can offer meaningful therapies. They need data -- they need to correlate survival statistics with particular therapies and similarly situated patients. MARF, through private donations, has sought to fill this void. MARF has already funded $400,000 ( please see November 15, 2000 press release and October 5, 2001 release) in applied research, and is preparing to fund two more research grants at $100,000 each in 2002. Additionally, despite a limited budget and a small mostly volunteer staff, MARF has already begun a clinical registry/database precisely of the type specified in the Bill. The Bill would authorize the Center for Disease Control to fund and operate a registry. UCLA would be the obvious choice for this long overdue project, as thanks to the selfless dedication of Dr. Robert Cameron and with the financial support of MARF, UCLA has already developed the basic software and the infrastructure. It will require more funding to allow patients to access the database from the comfort of their computers.

As Dr. Cameron wrote in a letter to Senator Diane Feinstein urging her to support the Bill, he helped found MARF "in an attempt to change the feeling of hopelessness that envelopes everyone who deals with this disease...Through MARF we have made progress in directing private money (most coming from patients themselves) to promising areas of research. Last year I proposed a National Mesothelioma Registry to fill the void of information about this disease (since the NIH and other agencies do not monitor mesothelioma), and this year with the generous help of MARF this registry was finally established but with only enough funding for one year."

The Bill requires the CDC to establish a registry for mesothelioma using such sums "as are necessary." This is a unique opportunity to save taxpayer dollars since MARF has already built the house so to speak, and now the government can help furnish, expand and maintain it. Currently, the CDC does not require doctors to report on the diagnosis, treatment history and death of mesothelioma patients. Before MARF, patients were diagnosed and they died, and nobody in the scientific/medical world knew about it. Nobody reviewed the pathology, the chest films, the symptoms, the treatments, the staging, the time of recurrence or progression, the response to a treatment or the complications, the exposure history and other critical data. The MARF registry will change this by creating a system for collecting that data, which will be used by scientists to evaluate conventional and novel therapies.

This was a proud day for MARF. MARF's mission is to eradicate mesothelioma as a life-ending disease through education, awareness and research. This bill authorizes funding to educate the public about the risks of asbestos still faced by millions of Americans, including children. It would provide financial support of up to $500,000 per year to seven hospitals which are currently engaged in basic and applied research:

• UCLA (Dr. Robert Cameron, MARF)
• MD Anderson/Houston (Dr. Roy Smythe, MARF)
• University of Washington (Dr. Eric Vallieres, MARF)
• University of Pennsylvania (Dr. Hahn, MARF and Dr. Testa, MARF)
• University of Chicago (Dr. Vogelzang, MARF and Dr. Kindler, MARF)
• Karmanos Cancer Institute in Detroit (Dr. Harvey Pass, MARF)
• Memorial Sloan Kettering, NY

Yes, in a few short years, thanks to the amazing financial support of our donors and the countless hours of pro bono service by our directors, science advisors and family advocates, MARF has come far. But not far enough. Mesothelioma patients need and deserve the full support of their government, with a commitment to spend the money to study the disease and work on novel therapies. This is a huge step in the right direction, and we salute Senator Murray and her staff. At lunch, Colonel Jim Zumwalt said it best when he raised a toast to Senator Murray's staff:

"In the armed forces, we value leadership. A leader is somebody who defends and protects the dignity and worth of others, without thought of personal gain. Most of us are here because mesothelioma has touched our lives in a terrible way -- we have a personal stake in fighting this disease because we have seen first hand the misery it causes. But for Senator Murray, this is not about avenging the loss of a loved one, or even about political gain. It's about doing the right thing because it's right, and that's the mark of a true leader."

The Bill is, in many respects, like a dream come true, but it's much too early to celebrate. The Bill needs the support of Republicans as well. It needs to survive the senate and then the House, and then on to the President. I encourage you to write letters to your U.S. Senators and congressman urging them to support the Ban Asbestos in America Act. Explain to them how mesothelioma has changed your life and that of your loved ones. Talk about your experiences in searching for qualified doctors and meaningful treatments. Educate your elected officials about the need for the registry, and the desperate need for research. Moreover, it is almost a crime that asbestos is still being used in America. Every time an asbestos product is applied, disturbed or repaired, it sheds tiny fibers which when inhaled plants in the lungs like tiny time bombs with a 15 to 40 year fuse. We must not allow a few greedy asbestos companies to continue planting the seeds of our own destruction.

Roger Worthington
June 19, 2002