In early 2008, our firm wrote an article laying out the choices and difficulties
faced by newly diagnosed mesothelioma patients. We suggested that patients
need more data and more hard information from surgeons and oncologists
regarding options. We also laid out the differences in reported survival
times for the two major surgical options, the pleurectomy / decortication
( P/D ) and extra-pleural pneumonectomy ( EPP ).
Roger was subsequently invited to make a presentation to the International
Mesothelioma Interest Group's annual congress in Amsterdam on September
25, 2008. His speech and PowerPoint presentation, which focused on funding
for mesothelioma research and development of an online clinical database,
are posted below. It was encouraging to hear so many surgeons throughout
the world speak favorably about the pleurectomy / decortication (P/D)
in terms of its survival averages, low surgical mortality, low rate of
complications, recovery and quality of life.
One surgeon from the UK, where there is an ongoing randomized clinical
trial comparing surgery (the EPP) to chemotherapy (Alimta/Cisplatin),
questioned whether "the pain was worth the gain" with respect
to the EPP. This surgeon, Dr. David Waller, announced that he favors the
P/D over the EPP and advises that the ongoing trial (The MARS trial) allows
patients selected for the surgical arm of the clinical trial to choose
between an EPP or the P/D. More on that to come.
Note that on the West Coast the only thoracic surgeon who has consistently
performed the pleurectomy / decortication for mesothelioma patients the
past 15 years is Dr. Robert Cameron in Los Angeles.
IMIG Speech, Amsterdam, Sept. 26, 2008
In 1988, when I first began representing asbestos victims, the prevailing
view amongst my Hobsian brethren was that mesothelioma was short-lived,
brutish, nasty and incurable. I had no trouble accepting this. My first
client was a young shipyard worker who had a tumor shooting out about
8 inches from under his right rib cage. I could barely look at him without
Then in 1997, I went to an IMIG conference in Philadelphia. For the first
time, I heard the world's top medical experts talking robustly about
new and exciting strategies for actually taming this ugly beast.
I was energized, but appalled. You had great ideas, but basically you -
the research community -- were broke. I was appalled because we'd
known about asbestos disease since the early 1900's and mesothelioma
since the 1940's. Asbestos had already killed hundreds of thousands
of people worldwide. Millions more were living with asbestos fibers festering
in their lungs. Billions of dollars had been spent on litigation. And
yet no serious effort had ever been undertaken in the U.S. to prevent,
detect, treat or cure asbestos cancer.
The asbestos epidemic in the U.S. had been packaged as a "trial lawyer
problem" or a "bankruptcy problem," but it wasn't a
public health problem
. In 1999, Harvey Pass, Bob Cameron and I decided to build a foundation
- MARF-- that would finally focus on basic and applied research. We invited
the asbestos industry (in our idealistic naivete), the drug companies,
patients, and advocates to put aside our disagreements on causation and
aim our guns at the common enemy, the tumor itself.
Today, despite some progress, mesothelioma is still an underfunded, orphan
disease. We still don't know what the best treatments are. We don't
know what the best surgery is, if any, or the best chemotherapy, if any,
or the best combination of therapies. Effective pain management remains
elusive. We've gained some ground on early detection and peritoneal
mesothelioma patients are living much longer thanks to advances in multi-modal
But we still don't have the weapons, or the warchest, we need to convert
pleural mesothelioma into a chronic, treatable disease, like diabetes
or high blood pressure.
In my work, I see the impact of this agonizingly slow progress every day.
When newly diagnosed patients and their families contact my office, their
first priority is to find the best treatment. Their second priority is
to get the compensation to pay for those treatments and take care of their
loved ones. They've usually done enough research to know two things:
it's not clear what their best move is but they better move fast.
I try to help my clients become
smart shoppers. I want them to find the best doctors and best treatments which carry
the best chance for them to stay alive longer.
I counsel them to ask tough questions. And they do. For example. They're
asking why surgeons tend to favor the radical pneumonectomy, even though
there's growing evidence that the pleurectomy / decortication has
a longer median survival, with less surgical mortality and fewer complications,
like atrial fibrillation. Plus, they get to keep their lung.
They want to know why doctors refer to the EPP as "curative"
and the P/D as "palliative," even though the goal of both is
the removal of all visible tumor.
My clients are asking why Alimta/cisplatin has been anointed as the "standard
of care." They want to know why an oncologist, without recommending
a surgical consult, would urge Alimta-cis as the "best, last and
only hope" even though multimodal therapy has much better survival numbers.
My clients also want to know about pain management and quality of life
issues. They want to talk to other patients and learn from their experience.
In sum, patients today are hungry for
But good, uncherry picked data are not readily available. So recently my
law office sent out questionnaires to 40 or so thoracic surgeons in the
US who treat mesothelioma patients. We targeted surgeons since surgery
is the bedrock of any multi-modal treatment regimen, and surgeons are
often regarded as the quarterback. My goal was simple: get the doctors
to gather their numbers and allow me to post them on my website, comparing
apples to apples, and let the patient-consumer decide.
As you can see, only 7 responded. Doctors Pass, Flores, Cameron, Rice and
others had no problem displaying their results in the marketplace - in
retrospect an act of courage and candor for which I'm sure confused
and bereft patients are grateful.
But this experience got me to thinking. Why do some doctors tout the virtues
of collaboration but keep their data private? Why are there so few surgeons
who treat this disease? Why do so few publish? Why are the words "asbestos"
and "mesothelioma" considered radioactive by some doctors? And
why in the U.S. is there so little interest in research and why are doctors
so reluctant to advocate?
First, in my view, mesothelioma is like a hybridized hydra-headed tar baby.
Surgeons can't just cut and run. It sucks you in and dominates your
practice. Clean margins are impossible - the tumor always comes back.
It's difficult and expensive to track and treat patients from start
to finish. Whether an EPP or PD it's a long and arduous surgery. In
the time it takes to do one 10 hour PD, a surgeon could perform 7 breast
implants and 3 liposuctions, make a lot more money, and have a social life.
Second, doctors don't want to get dragged into litigation. This is understandable.
The asbestos industry has a history of distorting the literature, silencing
critics, and corrupting science. Industry has spent millions hiring medical
mercenaries whose job is to manufacture doubt and discredit scientists
who report on the connection between asbestos, disease and death.
Third, on top of the threat of personal and career attacks, there's simply not much
government or private R&D money available for research, unlike AIDS or bioterrorism.
There's plenty of data out there, but there's never been the money
or the will to capture it, organize it and make it accessible for research.
And fourth, there's a lack of political outrage. Those who are responsible for
unleashing and feeding this beast have never fully been held to account.
This lack of outrage, in my view, has fed the notion that in a short time
this disease will simply fade away -- a notion which has undercut the
push for any long term research.
This apathy is reflected in our budget priorities. The NCI budget for mesothelioma
actually dropped 20% this year to a paltry $6.4 million from a trivial
high of $8.1 million. By way of comparison, cervical cancer and mesothelioma
have about the same incidence, but cervical cancer was funded in an amount
10 times greater than meso.
Against this backdrop of apathy and neglect, the asbestos industry has
invested billions of dollars to avoid liability.
Since the late 1960's, $90 - 100B has been consumed in the legal arena.
More than half has gone to transaction costs, like attorney fees and hired
gun medical experts. Only 42% has found its way to the victims.
A few years ago the bean counters predicted industry would spend another
$200 to $250 billion on litigation. But a well-funded anti-lawsuit crusade
yielded new laws that have driven down the number of cases filed and capped
damages at nominal levels. As a result, industry is predicted to save
about $60 billion.
Has industry plowed their huge savings back into cleaning up their mess?
Have they invested their windfall in medical research? Of course not.
Instead, they've poured more money into hiring more medical mercenaries
to churn out more junk science designed to give them more protection from
being held responsible for the people they've hurt.
In eight years, the industry has donated about $1.1 million to MARF, the
only non-profit that offers treatment-oriented research grants.
$1.1 million, by an industry whose aggregate value is in the
There are more than 1,000 mesothelioma lawsuits filed in the U.S. every year. In
each lawsuit, defense lawyers together will bill out over $1.1 million in legal
fees. That adds up to about a billion dollars every year to
deny or shift the legal
blame rather than
fix the underlying health
In short, this
leviathan litigation has sucked the life out of research initiatives. Millions that could've
been invested decades ago in finding a cure have been squandered on spin
doctors, lobbyists and corporate lawyers. When I helped form MARF, I thought
industry might take seriously their moral duty to clean up their mess.
We were wrong. In many states, the law limits the recovery of an estate
at an arbitrarily low number if the meso litigant should die before his
case is resolved at trial. It turns out, perversely enough, that industry
has an economic interest in hastening the demise of a mesothelioma plaintiff,
as the compensation they'd pay a widow is a lot less than what they'd
pay if her husband was alive.
OK, that's my outrage part. Let's talk about solutions.
We need to turn back the clock and start doing today what we should've
been doing all along - collecting clinical data and making it available
Here's how trial lawyers can help. We collect and we generate mountains
of medical records. After our case is finished, the data just sit on computer
servers or it's boxed up and sent to storage. We're talking about
around 1,500 mesothelioma cases per year. Records, slides, tissue, fluid
- the whole shebang.
The software exists to create a confidential, internet based database in
which we can easily upload medical records. The data fields can be customized
with logical, intuitive interfaces that make it simple for computer naïve
patients to use.
From anywhere in the world where internet access is available, patients
themselves would be able to log in and upload data on their symptoms,
such as pain, appetite, weight loss, shortness of breath, depression,
and other clinical factors.
Similar patient-friendly databases have been set up for other tumors. In
the US, we now have a Virtual Tissue Bank. All that's needed to complete
the research "circle of life" or "holy grail" is a
clinical database that reaches out to the patients directly.
Several years ago MARF help fund a clinical database pilot project. My
firm donated records for 350 patients to that effort. The project showed
promise but the medical community did not cooperate, citing a lack of
funding. Since then, the same engineers have continued to tinker with
the software, making it much easier and more affordable to use. It should
be ready to launch in early 2009.
How are we going to fund this database and the research projects it's
expected to generate?
Simply put, the U.S. Congress needs to finally get in the game and start
treating mesothelioma as a public health crisis. Trial Lawyers and victims
shouldn't be forced to solve a
public health disaster that was
started by industry,
stoked by an apathetic US government and
ignored by the drug companies. An ad hoc approach simply won't work. The US
Government needs to pass legislation to fund research
now, and fund it
Over a few Belgian Ales I can share with you my dreams of how to raise
real money - they involve 1) setting aside a fraction of the billions
of dollars in asbestos settlement trusts, 2) adding a tax to settlements
to be paid for by the wrongdoer, and 3) the voluntary transfer of a percentage
of settlements by plaintiffs and their lawyer.
A few closing remarks about how trial lawyers, doctors and patients can
help each other
We lawyers need to expand the scope of our advocacy. We need to help drive
research, educate our clients about the best treatment options, and make
our priority. We need to
continue to give money to research (thank the David and the Kazan law firms for
sponsoring this event). We need to
urge our clients to
participate in a clinical data base. We need to
donate our client's medical records. And we need to refer our clients to
those doctors who participate in the database, who
publish their results, and who
offer protocols that promise the best chance for a longer life.
Doctors need to step up, too. You need to faithfully record
and share clinical data. You need to tell your patients frankly what you know and
what you don't know. As a wise surgeon recently reminded me: "Honesty
need not be brutal and may be kinder than deceit." If the data show
that the PD is superior to the radical EPP, but surgeons shy away from
it because it takes longer but fetches a lower fee, then you need to re-adjust
your billing rates to reflect the value of your extraordinarily skilled labor.
Just as we lawyers need to inform our clients of treatment options, doctors
need to support their patient's pursuit of compensation. As we make
more progress and patients live longer, they will need more money to pay
for their treatments, travel and so on.
Doctors also need to shed their reluctance to advocate. You need to help
educate judges, juries and legislators about how
savage this tumor is, and how it can
strike anyone who has
inhaled asbestos, how it was
totally preventable, how it's very
expensive to treat, and how, with the
right mix of money, courage and brain power, meso can one day be controlled, like HIV.
With a clinical database, properly interpreted by biostatisticians, patients
will finally be able to choose doctors and therapies based on real data,
not salesmanship or hype. As active participants in the generation of
data, they will play a key role in their own survival. And, in my experience,
patients who feel empowered and respected will give back to research generously.
[Yes, the gold standard for determining the best options is a randomized
clinical trial, but in the U.S. its doubtful both patients and doctors
will push for this - we'll stand by and wait for the results in the
UK 'MARS" trial, even though now the architects of that trial
concede that the surgery arm should include the P/D in addition to the
EPP, if at all).
Finally, I'm an advocate, so permit me to make this challenge. IMIG
is respected worldwide as the leading body of doctors and scientists who
care about mesothelioma. You inspired me in 1997 to rally the troops to
raise money for research. Today, I'm encouraging IMIG to
stand up for mesothelioma patients and
join up with other prominent scientific groups by
adding your voice to the call for a universal ban on
all types of asbestos.
This is especially important in the US, where asbestos has not been banned,
and in Canada, which continues to be a leading exporter of asbestos. The
time is long over due to put an end to the canard that chrysotile is safe.
Only when all forms of asbestos are
banned will we finally be able to focus on treatment and
prevention. The title of the bill now pending in the US Congress, ie, "The Bruce
Vento Ban Asbestos and Prevent Mesothelioma Act of 2008," reinforces
this simple but profound connection, and I urge you to support it.
Finally, here's a little teaser to any entrepreneurs out there from
Big Pharma. There's millions of fiber infested people out there. The
only surefire way to cure mesothelioma is by preventing it in the first place.
Roger G. Worthington
Questions? Comments? E-mail Roger at firstname.lastname@example.org