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Fix The Problem!


January 24, 1999
Roger G. Worthington
Maui, Hawaii

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 shown promise.

Other promising therapy strategies that warrant research include:

  • Immunotherapy
  • 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 the fight.

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 1987, only 48 grants 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.


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.


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 our profession.

Thank you for joining me in the war against mesothelioma.

Please give generously.