A Very Familiar Story
Today, in a small town somewhere in America, a doctor will tell a Navy
veteran that he has malignant mesothelioma. After looking up "mesothelioma"
in an old medical textbook, the doctor will advise that the tumor is "incurable",
that the patient will live another eight to eighteen months -- "if
you're lucky", and that chemotherapy or surgery will only prolong
the suffering. The doctor doesn't know about any clinical trials,
and doesn't offer to look. Meaning well, the doctor will murmur, "Why
don't you get your affairs in order, and take a long cruise."
After the initial shock wears off, the veteran realizes that his doctor
doesn't seem to know much about mesothelioma at all. One of his kids
will get on the Internet, and start feeding him information. He's
just gotten to the point where he can pronounce "mesothelioma",
and now the jargon really starts to fly -- "extrapleural pneumonectomy",
"decortication with intra-operative hot chemo belly wash", "photoadjuvant
therapy", "Onconase", "gene therapy", and "angiogenesis
inhibitors." By the time his family physician finally refers him
to one of the few surgeons in the country with the expertise to treat
his cancer, the tumor has spread too fast and too far for surgery. Adding
insult to injury, his H.M.O. has refused to pay for this consultation
as "out of plan" and "out of state". In a form letter
the H.M.O coldly tells him don't bother to ask about "experimental"
therapy -- which of course for mesothelioma, for which there is no real
standard of care, is the patient's only choice.
As the pain with every breath mounts, the veteran will begin casting about
for clinical trials of ALIMTA
(R)(pemetrexed disodium) and Endostatin (an angiogenesis inhibitor), but there
are so many others clamoring for admission. Feelings of guilt gnaw at
him. He thinks every dollar he spends trying to prolong his life needlessly
takes from his wife and children, for whom he still must provide. All
his wife and children want is for him to have more life, at any price.
Mesothelioma has been reported in the medical literature since the 1940's.
The first wave of lawsuits seeking compensation for asbestos-related disease
began in the 1960's. Several of the largest manufacturers have sought
refuge in the bankruptcy courts. Billions of dollars have changed hands,
but scarcely a penny has gone to finding a cure. Meanwhile, mesothelioma
has claimed the lives of thousands. Today, the litigation grinds on, but
at the patient care level, nothing has really changed.
The Solution: Put the Patient First
The Mesothelioma Applied Research Foundation, Inc, a 501(c)(3) tax exempt
advocate for the mesothelioma
patient. We will fight for the mesothelioma patient's life by advancing research,
education and awareness. We will solicit funds from the asbestos manufacturers,
the trial lawyers, the Federal Government, and all others interested in
or affected by this disease. We will push for collaboration among these
parties, as well as the doctors and scientists, labor unions, and drug
companies. We will put their money, skill and power to work for what should
have been our TOP priority all along --
the patient's life.
Our Mission Is to Eradicate the Common Enemy
The enemy is mesothelioma -- the tumor. This tumor does not care whether
your collar's blue or white, whether you're young or old, rich
or poor. It has no feelings, no pity, no remorse. Like Arnold Schwarzenegger
as "The Terminator", it absolutely will not stop, until you're dead.
This Enemy Does Not Respect Innocence or Beauty
Some believe that since use of asbestos insulation in the U.S. was curtailed
in the mid 1970's, the disease is an afterthought or it will soon
die out. But this view ignores the fact that there are millions of tons
of asbestos in place. People are still exposed. People are still getting
diagnosed - 3-4000 per year.
Elizabeth Clancy -- shown here -- was an investment banker and tai kwon doe expert. She
died of mesothelioma at the age of 23, after a botched EPP.
Mesothelioma Does Not Respect Fame or Fortune
We all know that
Steve McQueen died of mesothelioma in 1980. The doctors in Los Angeles advised him in
1979 that there was no standard of care. So he went to Tijuana and took
laetrile -- and died horribly soon after. Sadly, 20 years later, patients
-- turned out by their hospitals -- are still flocking to Tijuana for
unregulated herbal panaceas.
Mesothelioma Does Not Respect Fame or Fortune
Admiral Zumwalt recently passed away from MM. His legacy includes his noble efforts in
advocating for Agent Orange victims. The Admiral was a reformer who wasn't
afraid to "buck the system." He only lived a few months after
his diagnosis. Had he lived longer, those who knew him believe that he
would've lobbied in Washington D.C. to help other Navy veterans who
have been dying of this disease for the past 40-50 years.
On January 25, 2000, I watched Dr. Robert Cameron at UCLA burn the mesothelioma
tumor off the lung of a 53 year old man named Don Thorp. Mr. Thorp served
with Admiral Zumwalt in Vietnam and knew him personally. He wanted me
to read this to you:
"I served my Country proudly for 22 years. It is difficult for me
to accept that my Country has not solved the mesothelioma menace, a war-related
disease that has taken the lives of too many veterans. We served with
pride, it's about time our country served us. Please solve the problem
and eradicate mesothelioma soon." Don Thorp, US Navy, 1964-1986
Mesothelioma Does Not Respect Faith or Family
Dennis Harline is a forensics scientist with the Mesa Police Deptartment in Arizona.
He was told by his local doctors his pleural mesothelioma was incurable.
He went to UCLA and was scheduled for a pleurectomy / decortication. The
night before his surgery, on his 56th birthday, Dennis was told that his
tumor had spread to his stomach. He was declared "inoperable."
Dennis got back on the Internet and searched high and low, but he did
not even find any "experimental" treatments for a patient in
his shoes. Dennis is now seeking herbal treatments in Tijuana. He has
three young children.
Mesothelioma Does Not Respect Health or Fitness
It's a myth that mesothelioma attacks only those bodies that are run
down and beaten up by a hard life style. I am seeing more and more patients
who exercise, who take care of their bodies. Many enjoy golf and travel
This man --
David Pickens -- was exposed during the Navy -- he got his disease while serving his
country. He went to the VA Hospital for a cure and they said, "Sorry,
we can't help you."
Interestingly, the U.S. Government spends $1.5 billion a year on AIDS
research. Back in the 1980's, AIDs was considered incurable. Now,
AIDS patients are not considered terminal -- they have hope.
We Must Liberate Ourselves from the Apathy and Reverse the Nihilism
"Nihilism". This is a word that Dr. Harvey Pass despises. It
means in the medical parlance that " mesothelioma is so bad that
nothing can be done to cure it." Dr. Pass, a gifted surgeon and cancer
researcher, believes otherwise. He sees evidence in the labs that the tumor
does have an Achilles heel and it can be attacked at the molecular level. Dr.
Pass' optimism typifies the can-do spirit that is shared by his colleagues
on MARF's Science Advisory Board.
Apathy? The Federal government gives $3.36 billion a year to the National
Institutes of Health (NIH) for cancer research. However, the NCI, which
operates the clinical trials for the NIH, does not currently offer any
hopeful clinical trials for those cursed with mesothelioma. Of the 30,000
cancer research grants awarded by the NCI since 1987, only 48 studies
even mentioned the word "mesothelioma."
Warriors Against a Common Enemy
Exciting things are happening at select hospitals. But the progress is
jagged, almost random. Doctors don't always collaborate -- sometimes
it's as if each hospital operates as an isolated fiefdom, jealously
guarding its precious data. MARF hopes to change this by bringing the
experts together to share ideas, to form a solid action plan and to attack
the tumor from
all angles using
MARF Science Advisory Board ( as of February, 2002 )
Harvey Pass, M.D.
Chairman, Karmanos Cancer Inst.
Victor Roggli, M.D.
Raphael Bueno, M.D.
Harvard/Brigham and Women's
Robert N. Taub, M.D.
Lary A. Robinson, M.D.
H. Lee Moffitt Cancer Center
Dan Miller, M.D.
Steve Hahn, M.D.
University of Pennsylvania
W.Roy Smythe, M.D.
M.D. Anderson/University of Texas
Hedy Lee Kindler, M.D.
University of Chicago
Joseph R. Testa, Ph.D.
Fox Chase Cancer Center
Claire Verschraegen, M.D.
M.D. Anderson/University of Texas
Eric Vallieres, M.D.
University of Washington
MARF has already assembled (as of February 2000) the top medical specialists
in the nation. Our experts span the country, from Dr. Eric Vallieres at
the University of Washington in Seattle, to Dr. Lary Robinson at H. Lee
Moffit in Tampa Bay, Florida. Dr. Robert Taub is an oncologist spearheading
a protocol for peritoneal mesothelioma patients at Columbia University
in New York City. Dr. Victor Roggli is a member of the U.S.-Canadian Mesothelioma
Panel (and he is the only MARF science advisor who has testified in asbestos
litigation -- for
Dr. Harvey Pass, a thoracic surgical oncologist at Karmanos Cancer Institute
in Detroit, is a tireless advocate for the patient. From 1986 to 1996,
Dr. Pass was the Senior Investigator on mesothelioma and other cancers
of the lung at the NCI in Bethesda. He has treated over 230 patients with
mesothelioma and has published over 60 articles in peer-reviewed journals
UCLA's skilled surgeon Dr. Robert Cameron exemplifies MARF's renaissance
spirit. A few months ago, I witnessed a ten hour pleurectomy he performed
at UCLA. During the procedure, he harvested tumor specimens and gave them
to his assistant, who raced them upstairs to the laboratory. The assistant
carefully preserved the living tumor cell lines and later injected them
into mice, in order to induce tumor. Dr. Cameron then treated the tumor-infested
mice with interleukin IL-4 toxin -- a therapy which showed a positive
response. Dr. Cameron is fighting the tumor
on the operating table and
in the laboratory. That's what we need --
cancer killing warriors.
are united. They
will collaborate. These doctors are in the trenches fighting the asbestos tumor
Novel Strategies Which MARF Hopes to Investigate
Today there are a few trials that have shown promise. A trial using Platar
showed a 73% response. That's sensational. Eli Lilly has a promising
immunotherapy drug called ALIMTA that it is planning to use in phase II
trials from coast to coast. The problem is recruitment. The patients won't
know about the trials unless their doctors tell them or they are sophisticated
enough to use the Internet.
Dr. Cameron read about a drug in a bulletin that was being used in a trial
by Bayer. Apparently, the drug showed an amazing response for a mesothelioma
patient. He contacted the Bayer researchers. They were excited about creating
a trial for mesothelioma patients. But the researchers in the lab coats
were ordered by "Corporate HQ" to "stand down". The
reason: not enough upside.
There is a gene therapy trial at UPENN and at LSU. The program is costly
and the eligibility criteria are narrow. Although the research has shown
promise, the survival of the protocols has been jeopardized by the recent
death of a young man who was undergoing gene therapy.
There's been a lot of excitement about Angiogenesis Inhibitors, pioneered
by Dr. Folkman at Harvard. The idea is to starve a bulky tumor's blood
supply. The drug can be administered by pill and has shown promise in
stopping the tumor from growing. Angiogenesis inhibitors include Endostatin,
Lovastatin and Thalidomide, among others. There are trials underway at
the University of Wisconsin (Dr. Shilling), Dana Farber in Boston and
M.D. Anderson in Houston.
Not much research has been done on identifying mesothelioma tumor markers
for prevention/screening purposes. Everyone knows that by the time the
tumor is symptomatic, it may be too late. Research is needed to allow
patients in high risk populations to have their blood checked for tumor
markers. We need to take seriously the idea that the mesothelioma time
bomb can be defused before it blows. (see:
Other promising therapy strategies that warrant research include:
Now is the Time for Commitment!
MARF is here to begin a new chapter. We believe that mesothelioma can be
cured, if we are committed, if we mobilize, if we apply our collective
brawn and brains. We need to bridge the gap between the medical libraries
and the hospital rooms. We need to take the information out there already,
add to it, focus it, harness it -- and bring it to the patient who was
just diagnosed today.
MARF's goal is to turn the mesothelioma patient's survival curve
UPWARD and to the RIGHT!
Mesothelioma Patients Need Time
Every single day that a patient remains alive, the hope remains that a
cure can be found WHILE he can benefit from it. For a mesothelioma patient,
every single day of life is precious. If they know that we working on
fixing the problem, they will have greater reason to hang on and continue
Dr. Robert B. Cameron
MARF Will Foster a Medical-Legal Alliance
If we're going to defeat mesothelioma, we need a new approach. We,
as lawyers, need to know what the surgeons and oncologists are doing.
They need to know what we're doing. We need to open each other's
eyes. MARF aims to bring the patients, the doctors, the lawyers, the politicians
-- into the operating rooms and the laboratories. I truly believe that
mesothelioma is "pure concentrated evil." We should not turn
our heads away from the horror of this tumor. The more we know about the
tumor, the more we will despise it -- and the more determined we will
be to destroy it.
Board of Directors
We're still at war with most of the asbestos companies. Neither side
has agreed to lay down its weapons. But we have agreed to shoot a few
of our bullets at the common enemy. Some will say: "The asbestos
companies caused the problem, they have the duty to mitigate -- let them
clean up their mess." That's a valid argument. But 30 years after
the first wave of lawsuits was filed in Beaumont, Texas, the "tortfeasors"
haven't cleaned up the mess. They haven't really tried -- but
neither have we, the patients'
advocates. Who loses? Beautiful young ladies like Elizabeth Clancy, that's who.
The Board of Directors includes five Doctors (Dr. Robert Cameron, UCLA
Medical School; Dr. Nicholas Vogelzang, University of Chicago; Dr. Robert
Ginsburg; Memorial Sloan Kettering; Dr. Mike Harbut, Wayne State University,
Dr. Robert Loggie, University of Texas SW Medical School); two family
members whose relatives died of mesothelioma, Susan Vento (wife of
Rep. Bruce Vento, Deceased) and Mouzetta Zumwalt Weathers (daughter of
Admiral Elmo Zumalt, Deceased); and two lawyers, Roger Worthington and Robert Komitor.
Knowledge is Power
The patient needs to be armed with the best information available. He needs
to have a solid basis on which to make an informed choice. He shouldn't
be made to feel like a guinea pig. And he shouldn't be made to feel
like he's got one foot in the grave.
MARF will increase awareness of the disease. We need to dispel the myths
that the mesothelioma epidemic is over, that it's a blue collar disease,
that it afflicts only the elderly, and, worse, that it is
incurable -- how do we know it's incurable without resolving to cure it? We
need to educate the front line doctors that treatments are available.
We need to talk to our elected leaders about responsibility, as Admiral
Zumwalt did with Agent Orange. Navy veterans with mesothelioma are no
less casualties of war than their shipmates taken in battle. The Division
of Veterans Affairs and indeed our federal government need to assert their
moral responsibility and join our efforts to educate and cure.
MARF's Funding Goals
Our goal is to raise over $10 million in the next few years. Realistic?
Absolutely. The Susan Komen Foundation has raised over $130 million for
breast cancer. We want to be able to offer grants in the amount of at
least $250,000. We will solicit grant proposals from the best and brightest
without regard to citizenship. Our twelve member Science Advisory Board
will review the grant proposals and rank them according to National Cancer
Institute guidelines. This is a blind, peer review process, with each
vote carrying equal weight. The Board of Directors will then allocate
the funds available. The Board will not consider any research proposals
causation. MARF is focused on
treatment options only.
For more information regarding funding mechanisms, please see our website.
If you are currently represented in an asbestos-related claim, we encourage
you to speak with your attorney about voluntarily making a donation from
your settlements. A useful donation form is enclosed, and is posted on
our website at
http://www.mesothel.com/pages/marfinfo.htm. As you can read on our website, the costs of a clinical trial stretching
two to three years and involving 20 to 30 patients and benchwork (laboratory)
trials are not nearly as expensive as you might think. See:
Your donation can make the difference!
Donations With No Strings Attached
We have carefully crafted MARF's bylaws to prevent the industry donors
or directors from using the fact of their contribution to MARF as a ploy
or ruse to lobby for legislation to curb the rights of asbestos victims
to seek damages in court for their injuries. Moreover, the asbestos donors
may not argue in court that their fault or damages should be reduced because
of their agreement to contribute to MARF. Similar restrictions apply to
the plaintiff's law firms.
Help MARF Help You
Please help us get the word out. Let your coworkers, union brothers, former
shipmates and others with asbestos-related illness know that MARF will
fight for mesothelioma patients in the laboratories and hospitals, where
we hope that a cure will be found. Put them in touch with MARF, so we
can spread the word. Mesothelioma patients today are like lepers from
a century ago -- too many have been banished to doom and forgotten. We
must reverse this apathy --
Thank you for your support and your generosity.
Roger G. Worthington
February 21, 2000