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
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
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
"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
$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
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.
June 19, 2002