January 24, 1999
Roger G. Worthington
Today, in a small town somewhere in America, a 60 year old man will be
told by his doctor that he has malignant mesothelioma. His doctor, after
looking the word up in an old medical textbook, will tell him that the
tumor is "incurable". The doctor will say that if he's lucky
he will live 8 to 18 months. He will tell him that chemo or surgery really
won't help. The doctor probably won't know about any clinical
trials and won't offer any. He will kindly advise his patient to "get
his affairs in order" and "take a long cruise."
Faced with this bad news, the patient will be devastated. He might give
up and do nothing. Or he may choose to fight. He will have to do his own
research. After a few days on the internet, he will probably know more
about mesothelioma than his doctor. He will learn about scary sounding
"radical" procedures like the "extrapleural pneumonectomy".
He will discover that the treatments are painful and expensive. If he's
well enough and can afford it, he may decide to go to New York, LA, Detroit
or Boston. He will find out that his HMO probably wont cover the treatment
because it is "experimental."
Meso has been reported in the literature since the 1940s. We have been
filing lawsuits since the 1960s. Thousands of mesothelioma patients have
died. Several of the largest manufacturers have sought refuge in the bankruptcy
courts. Billions of dollars have changed hands. Juries have been justifiably
outraged. Meanwhile, as the litigation grinds on, at the patient care
level, nothing has really changed. We continue to spend millions on experts
to prove and deny causation. But barely a penny is spent on finding a cure.
We are "advocates." I looked up the word. An advocate is "
one who pleads the cause of another." As lawyers, we have fought for our client's rights to compensation.
But you know as well as I do that our client's first priority is LIFE.
They want to live. They want to watch their children graduate and their
grandchildren ride bikes. They want hope. I have never met a client who
said he would gladly trade his lungs for a million dollars or even a trillion dollars.
A mesothelioma patient is like a passenger on a sinking ship -- he doesnt
care what caused the ship to sink, he simply doesnt want to drown.
MARF has been formed to
advocate for the patient, to put the patient first. Our mission is to eradicate
mesothelioma as a life-ending disease by advancing research, education
and awareness. We intend to accomplish our mission through the collaboration
of doctors and scientists, trial lawyers, manufacturers, labor unions,
drug companies and the Federal Government.
This is a long overdue first-step towards restoring hope and ending the
misery for mesothelioma patients and their families.
Let me say this at the outset: MARF's donors can honestly disagree
over who and what is to blame, but one thing is certain: patients diagnosed
with this terrible tumor will never have a realistic hope for a cure if
we don't spend the research money NOW to find that cure. If we can
agree on that goal, then we can work out the rest.
The enemy in this war is mesothelioma -- the tumor. A tumor that does not
respect the color of a person's collar. It's like Arnold Scwharznegger
as The Terminator, it absolutely will not stop until its victim is dead.
Some believe that since use of asbestos in US curtailed in 1973, 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 was an investment banker and tai kwon doe expert. She died of mesothelioma
at 23, after a botched EPP.
We all know that Steve McQueen died of mesothelioma in 1980. The doctors
in LA advised him in 1979 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.
Admiral Zumwalt recently passed away from MM. His legacy includes his noble
efforts in advocating for Agent Orange victims. He only lived a few months
after his diagnosis. Had he lived longer, those who know believe that
he would've lobbied in Washington DC to help other navy veterans who
have been dying of this disease for the past 50 years.
On Wednesday I watched Dr Cameron at UCLA burn the mesothelioma 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.
Dennis Harline was told by his local doctors his pleural meso was incurable.
He went to UCLA and was scheduled for Pleurectomy. The Night before surgery,
on his 56th birthday, he was told his tumor had spread to his stomach
and he was inoperable, which today just about means he's incurable.
He is now seekng herbal treatments in Tijuana. He has three young children.
It's a myth that mesothelioma attacks only those bodies that are run
down and beaten down by a hard life style. I am seeing more and more patients
who exercise religiously, who take care of their bodies, who wear a coat
and tie to work.
Interestingly, the US Govt spends $1.5 billion a year on AIDS research.
Back in the 1980s, AIDs was considered incurable. Now AIDS patients are
not considered terminal -- they have hope.
This man -- David Pickens -- was exposed during the Navy -- he got his
disease while serving his country. Mesothelioma patients today are like
Lepers from a century ago -- they have been forgotten. 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 meso.
"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 all of his colleagues on MARF's science Advisory Board.
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 data. MARF hopes to change this by bringing the experts together
to share ideas, to form a solid action plan and attack the tumor from
all angles using all disciplines.
MARF has assembled the top medical talent in the Country. The SAB reads
like a " who's who" of mesothelioma treatment experts. You've
all heard of Dr. Sugarbaker, who pioneered the Tri modal therapy at Dana
Farber in Boston. Our experts span the country, from Dr. Vallieres at
UW in Seattle to Dr. Lary Robinson at H Lee Moffit in Tampa Bay. Dr. Sterman
is one of the principal investigators of the gene therapy trial at UPEnn.
Dr. Taub is an oncologist who is spearheading a treatment protocol for
peritoneal mesothelioma patients at Columbia University in NYC. Everyone
knows Dr. Roggli, the only member of MARF who has testified in asbestos
litigation -- for both sides.
These experts will collaborate. IF MARF can get a bunch of god-like surgeons
to work together, I'm sure we lawyers can do the same. It's like
Ronald Reagan used to say: It's amazing what you can accomplish if
you don't mind who gets the credit.
We all know that the tumor is vicious. We know the odds are bad. A few
have survived greater than 5 years. The long term survivors have undergone
radical surgery, chemo and radiation. All three. Part of the problem is
that by the time the patient is diagnosed, there is already lymph node
involvement and invasion of other organs. We need a more reliable diagnostic
protocol and staging standard.
We can easily identify the problems that mesothelioma patients face.
Some doctors feel the need to do something, so many insert talc in the
pleural cavity hoping to prevent the tumor from spreading. It's like
spitting into the wind. Many trials wont even accept a patient who has
a talc pleurodesis. The quick fix approach actually jeopardizes the patient's
chances for a long term cure.
You read a lot about prognostic factors, like cell type, sex, staging,
age, etc. Another key factor is where they are diagnosed. Only a handful
of hospitals nationwide have a standardized protocol for treating meso.
And only a handful of newly diagnosed mesos will even learn about them.
We can't depend on the drug companies to find a cure. The drug companies
are capitalists. They aren't going to sink the R & D dollars into
a tumor that afflicts "only" 3-4000 patients per year. In their
thinking, even if they did spend the money, by the time the drug passed
FDA approval, the epidemic would be ancient history.
Dr. Pass and others surmise that the best and brightest have shied away
from Meso research because of personal fears that they would be targeted
for attack from either side if their research did'nt fit the right
agenda. The litigation has turned many scientists and doctors away.
Meso patients have advocates in the courtroom. They also need advocates
in the laboratories and in the corridors of Congress where the cancer
research money is allocated. AIDS, Breast and Prostate cancer all have
their advocacy groups. MARF will fill the void for mesothelioma patients.
The key is to focus the attention on the patient and unite the medical
experts. The patient needs to be armed with the best information available.
He needs to make an informed choice. He shouldn't be made to feel
like a guinea pig.
Our goal is to create a high standard of care for mesothelioma patients.
This is process that should've been started years ago. But better
late than never. (Can you imagine where would be now if the asbestos companies
had taken their duty to mitigate seriously 60 years ago?)
We need to dispel the myths that the mesothelioma epidemic is over, that
it's a blue collar disease, that it afflicts only the ancient, and
that it is incurable -- how do we know without trying?. We need to educate
the front line doctors that treatments are available. We need to talk
to our elected leaders about responsibility, like what Admiral Zumwalt
did with Agent Orange. For Navy veterans, mesothelioma is certainly a
"war related disease" -- no different than a bullet wound (
there's just a much longer delay between the insult and the symptom).
MARF's board members include lab researchers and surgeons. Dr. Cameron
exemplifies this interdisciplinary expertise. He is a skilled surgeon.
I witnessed an 11 hour pleurectomy he performed at UCLA. During the procedure,
he harvested chunks of tumor and his assistant raced upstairs to the lab
to preserve the living cell lines. Later, he will inject the living tumor
cells into rats, and treat them with interleukin IL-4 toxin. He is fighting
the tumor on the operating table and in the laboratory. That's what
we need. He's now planning a clinical trial using IL 4.
Despite lack of research dollars, many doctors and scientists are making
small steps towards finding a cure.
Today there are a few trials that have shown promise. A trial using Platar
in NYC and Houston showed a 73% response in a trial of 15 pleural mesos.
Eli Lilly has plans to bring it's phase II MTA trial to several hospitals
from coast to coast.
Dr. Cameron learned about a drug 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 who really wanted to create a trial
for mesothelioma patients but they 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. But the research to date has
Other promising therapy strategies that warrant research include:
- Photodynamic therapy
- Intracavitary infusional therapy
There's been a lot of excitement about Angiogenesis Inhibitors. I know
about three small scale trials in Dana Farber, MD Anderson and University
of Wisconsin. 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. The protocols discuss using the angiogenesis inhibitors
with chemo agents, like gemcytabine, which can attack the tumor cells directly.
Not much research has been done on identifying tumor markers. 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.
We've all heard speeches at asbestos seminars. We've all read the
medical articles. We've all seen the suffering. We've earned money
and we've spent money. MARF is here to begin a new chapter. We believe
that meso can be cured, if we are committed, if we mobilize, if we are
serious. 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 in Anytown, USA.
MARF's goal is to turn the mesothelioma patient's survival curve
UPWARD and to the RIGHT!
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
If we're going to defeat meso, we need a new approach. We, as lawyers,
need to know what the surgeons and oncologists are doing. We need to open
each other's eyes. MARF will bring the patients, the doctors, the
lawyers, the politicians -- into the operating room. 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 despise it, the more determined we will be to destroy it.
We are asking for your comitment:
*Help us contact government agencies that budget the cancer research money.
Funding for mesothelioma has been disproportionately low vis-a-vis other cancers. Of the
30,000 -plusresearch grants awarded by the National Cancer Institute since
even mention the word "mesothelioma". We need to reverse the trend of institutional apathy.
*tell your clients. If a client passes away, in lieu of flowers, suggest
that donations be made to MARF.
Each of us has made a good living representing mesothelioma patients. We
have dedicated much of our life to helping mesothelioma patients obtain
compensation. We have in many ways won that war. Now let's turn our
energy, our power, towards combating the ultimate enemy -- the tumor itself.
We are asking that you give an amount that is commensurate with your wealth,
knowledge and compassion. OCF has pledged $1 million. My firm has pledged $500,000.
Please consult the brochure for the levels we have set.
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 12 member SAB will review the grant
proposals and rank them according to the NCI guidelines. The Board of
Directors will then allocate the funds available.
Rest assured, The Board will
not consider any proposals that deal with causation, whether it's asbestos,
SV40 or any other purported cause. MARF will consider proposals that will help
prevent, detect and treat mesothelioma.
You should know that Dr. Pass is not infatuated with SV40 as a purported
carcinogen. He is intrigued with the idea that a vaccine can be made that
will target mesothelioma tumors. I recently took his deposition. Dr. Pass
testified under oath that there was no data to suggest that SV40 causes
mesothelioma in humans.
The bylaws anticipate MAS -- mutually assured skepticism.
D. The Board of Directors
shall not authorize for review by the Science Advisory Board any research
proposal that is inconsistent with the
goals and purpose of the Corporation--p
revention, treatment and cure of mesothelioma. The Founding Director shall have the
sole authority to reject any research proposal submitted by any group or individual that
may serve to
bolster a litigationobjective, such as research regarding the causation of mesothelioma.
THE ANTI-GAF PROVISION:
E. The Founding Director has authority to refuse contributions to the Corporation
if the Director has reason to believe the donor intends to
manipulate the fact of the contribution for political purposes that are not consistent with the purpose of the Corporation.
The SHEP HOFFMAN PROVISION
F. The Corporation shall require that every donor sign an agreement that
the donor will
not use the fact of the contribution in jury argument
We have agreed to aim our weapons at the common enemy in this war. Bob
K of NYC and myself will be contacting the trial lawyers. Maura Abeln
and Jay Hughes will be seducing their side. Robert Cameron will be in
the middle, helping us open doors to govt agencies and drug companies.
Many will see Maura's name and Jay's name and react with skepticism
(maybe not Mauras -- I know several lawyers attended her wedding). Some
will say: "The asbestos companies caused the problem, let them pay
for the solution." I think that's valid. But 30 years later after
the first lawsuit was filed in Beaumont, Texas the "tortfeasors"
haven't solved it. They haven't even tried. But neither have we.
The benefits are obvious.
We have seen how mesothelioma wastes the human body, kills the spirit and
ravages families. Let's show compassion and resolve to end the suffering.
Much is said these days about voluntarism. Let's show the politicians
that we have heart, that we can mobilize against a common enemy, and that
we put our money where our mouth is.
Let's show the Courts that we have expanded the definition of "advocate",
that we are not in it just for the money.
As a donor, you will have access to some of the best surgeons and doctors
in the land.
If you need a legal justification to donate, consider the California tort
system. If a mesothelioma client dies before trial, his P & S damages
die with him. We have incentive to KEEP OUR CLIENTS ALIVE.
Clearinghouse for clinical trials and enrollment criteria
Alerted to medical breakthroughs
Recognition on website commensurate with the level of contribution.
We have applied for 501 c 3 charitable tax exempt status and are awaiting approval.
Many of us have websites. Punch in the word "mesothelioma" on
an internet search engine and you will find 70 lawfirms ready to knock
down steel doors and leap tall buildings to help mesothelioma patients.
Let's see who is genuinely interested in the patient's welfare.
Let's weed out the pretenders who feed a negative stereotype about
Thank you for joining me in the war against mesothelioma.
Please give generously.