Advancing Mesothelioma Research Since 1998
In 1999, with the help of Dr. Harvey Pass and Dr. Robert Cameron, Attorney
Roger Worthington founded the Mesothelioma Applied Research Foundation or “MARF.” MARF was born out of a vision that diagnosing mesothelioma patients
earlier could improve prognosis. The physicians, donors, and supporters
of MARF all share the same goal – find a cure.
What is MARF?
MARF is a 501(c)(3) non-profit charity organization committed to
empowering mesothelioma patients through pushing for advanced research, education,
and awareness. Everyone involved in MARF shares the common goal of curing
mesothelioma for good.
MARF’s Mission
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.
The Problem
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
charity will 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.