Ambushed by the Asbestos Industry
By Paul Zygielbaum, MS
My battle against malignant peritoneal mesothelioma (MPM) began during
a routine echocardiogram in November 2003, when the technician observed
a large amount of fluid (ascites) in my abdomen. Subsequent CT scans,
ultrasounds, and urine and blood tests gave essentially negative results:
only ascites-no obvious masses, no positive cancer markers, no signs of
liver disease. My case seemed to be an enigma.
My abdomen had been gradually enlarging for about five years. In the months
preceding the discovery of the ascites, it became so distended that my
navel everted. I had other problems as well: fatigue, shortness of breath
during exercise, excessive healing time for small cuts, a craving for
high-protein foods, slow growth of hair and nails, chronic constipation
and abdominal discomfort, and thinning muscles in my legs and arms.
Mesothelioma was not initially suspected, perhaps because of the rarity
of the disease and because of my professional background as a mechanical
engineer and manager. My physicians continued to pursue a diagnosis. A
paracentesis, with the removal of 3.5 liters of ascites, revealed no signs
of cancer. A PPD skin test, to look for abdominal tuberculosis, also proved
negative. Finally, in January 2004, I underwent laparoscopic exploration
The surgeon observed numerous small tumor implants dispersed on the surfaces
of the organs and along the lining of the abdomen, a finding consistent
with peritoneal mesothelioma. After outside review by several pathologists,
a definitive answer arrived: low-grade MPM. Three months after the echocardiogram
and five years after the first symptoms, I finally had a diagnosis.
There is significant controversy about the best way to treat low-grade MPM.
Because of the rarity of the disease, there haven't been any large
trials comparing outcomes of different treatments. Nonetheless, my medical
oncologist felt that aggressive treatment was warranted. He thought my
symptoms, already significant, would only worsen over the next several
months, and that aggressive treatment could lead to prolonged, sustained
remission. He recommended three surgical oncologists across the United
States who specialize in treating MPM.
After careful consideration, I selected Dr. Brian Loggie, at Creighton
University, who proposed a combination of surgical debulking and Mitomycin
C chemotherapy. We hoped this approach would stop the cancer and ascites
production, while leaving options open for future treatment.
The procedure, performed in May 2004, resulted in removal of my omentum,
spleen, gall bladder, appendix, and falciform ligament, along with more
than four liters of ascites. Parts of my peritoneum, stomach, and pancreas
were also removed, as were two suspicious lymph nodes. Tumors were cauterized
on the underside of the diaphragm and in the mesentery. The entire surgery
with intraoperative chemotherapy took about 10 hours. I spent two weeks
in the hospital with postoperative ileus and pneumonia.
Since the treatment, my condition has been monitored by periodic high-resolution
CT scans, and I take 200 mg of Celebrex daily to inhibit tumor angiogenesis.
To date, 18 months later, there is no evidence of recurrence.
Mesothelioma is predominantly caused by respiratory exposure to asbestos fibers.
This exposure continues to occur in the United States because of a century-long
cover-up of both the hazards of asbestos and the extent of its distribution.
I was exposed to asbestos in all three of the most common ways. First,
my father, a steel worker, brought it home on his clothing. Second, I
worked with asbestos-containing materials as a technician and engineer
in the aerospace and electric utility industries. And third, I was exposed
to asbestos while doing home wall repairs. At no time during these exposures
was I aware of the hazard. Now, after recognizing the extent of asbestos
contamination in the environment, and the extent to which this contamination
and its hazards have been deliberately hidden from the public, I feel
I was ambushed by the asbestos industry.
To fight back, my wife and I initiated a liability lawsuit against companies
that we held responsible for my asbestos exposure. We engaged a well-known
attorney in the field, who later turned my case over to another firm more
experienced with low-grade MPM. I was more fortunate than many mesothelioma
patients in making these connections.
At the same time, I began to study the history of asbestos litigation and
the attempts to legislate an end to such litigation. I read about the
asbestos industry's long record of political and media influence.
I became incensed at the suffering heaped upon hundreds of thousands of
Americans by this industry, with what seems like the blessing of the federal
government and some state agencies. I began writing letters to politicians
and newspaper editors.
From my personal history, the attorneys created a list of about two dozen asbestos
product companies that we believed shared the responsibility for causing
my disease. Our suit was based not only on the suffering and financial
losses I'd endured, but also on the expectation of a shortened lifespan
and the cost of potential future medical procedures in the possible absence
of medical insurance. My wife sought compensation for the loss of "consortium"
or the normal companionship of marriage. I just wanted to be able to live
out whatever time I had left without worrying about leaving my family
financially destitute. And I wanted a chance to enjoy some retirement,
as mesothelioma could well deprive me of those "golden years."
I began volunteering in the battle against asbestos-related diseases. I
became legislative director of the Asbestos Disease Awareness Organization
(ADAO) and work informally with the Asbestos Victims Organization and
the Mesothelioma Applied Research Foundation.
In April 2005, I joined an ADAO delegation that visited various U.S. Senate
staffers and worked with other asbestos victims' organizations to
develop a statement of opposition to SB 852, the "Fairness in Asbestos
Injury Reform Act of 2005." This bill, which is intended to stop
asbestos liability lawsuits, is now before the full Senate. We held our
meetings and a press conference, after which a member of the staff of
Sen. Richard Durbin (D-Ill.) asked me to provide the senator with information
on my own case and my views on the bill.
The next day we were provided seating at a Judiciary Committee mark-up
session on the bill. Sen. Durbin made an impassioned speech arguing against
the bill, paraphrasing one of my letters to remind the committee that
asbestos exposure involves lives and suffering, not just dollars and statistics.
He then unexpectedly introduced another mesothelioma patient and me to
the committee and the audience, sparking an acrimonious exchange between
himself and the committee chairman, Sen. Arlen Specter (R-Pa.), who is
the author of the bill. I was able to see myself on C-SPAN later, having
intervened in a minor way in the deliberations of the Senate Judiciary
I continue to work against SB 852, which I consider to be patently unjust
and cruel to most asbestos-related disease victims and their families.
Several months into the litigation process, we reached settlement agreements with
about half the defendants. There was even an agreement that certain power
plants would be cleaned up and the affected employees informed of the
situation. But one large corporation went out of its way to avoid accepting
responsibility in the face of damning evidence of undisclosed asbestos
contamination at a power plant they had designed and specified. My wife
and I decided to add another purpose to our litigation: to get the truth
about this asbestos contamination and its cover-up into the public record,
for the benefit of other workers at risk.
I put my engineering background to work with our legal team to review the
documentation produced by the defendant. We discovered a long trail of
evidence pointing to asbestos contamination of the power plant. With all
the legal planning and maneuvering, including apparent surveillance of
our home and attorneys' offices, my wife and I sometimes felt we were
acting out an episode of "Law and Order," but we were not about
to be intimidated.
We began to understand that our litigation battle was more than casually
linked to what was happening in the Senate, where the same defendant is
lobbying heavily for SB 852. They were quite aware of my own political
activities in this regard and had much to gain from concealing their culpability.
We went to trial in June 2005, with the defendant still denying the existence
of asbestos contamination at its power plant. Because of the way the key
evidence emerged on the second day of trial, the defendant moved for a
mistrial, which the judge granted. Although appalled by this turn of events,
we decided that we had at least met our goal of getting the evidence out
into the public record. Now this defendant will have to inform its employees,
shareholders, and the public of the asbestos contamination, and we can
expect that other utilities will begin to scrutinize their installations
closely. We also decided on an additional goal: to convince the defendant
to donate substantial funds to mesothelioma medical research. After intense
negotiations, we achieved that goal, as an additional sum added to our
final settlement with the defendant.
Having fought mesothelioma on the medical, legal, social, and political fronts,
I feel like a soldier in a war against those who find their financial
interests best served by keeping secret any information about the causes,
prevalence, and incidence of asbestos-related diseases.
One way to fight the war against mesothelioma is to bring better awareness
of asbestos-related diseases to the medical community. I have learned
that many patients go through experiences similar to mine, with long delays
in diagnosis and a sense of futility about treatment. I often hear of
newly diagnosed mesothelioma patients being told by their physicians to
get their affairs in order because there is nothing to do but resign oneself
to dying within months. I hear of battles with insurance companies who
claim there is no standard of care for peritoneal mesothelioma and therefore
deny authorization for treatment.
The federal government and the news media outlets (some of which are owned
by companies with asbestos liability) seem to focus on bemoaning the bankruptcies
caused by asbestos injury litigation. But these lawsuits are occurring
because hundreds of thousands of Americans have suffered and died as the
result of conscious decisions by companies to put profits over people's
lives. Few Americans realize that asbestos use is still legal in this
country, that its use is not monitored by the government, and that probably
some 3,000 industrial and consumer products sold in the United States
today contain asbestos.
While the incidence of asbestosis is declining, the incidence of mesothelioma
is not.2 Physicians need to be aware that "asbestos workers"
are not the only people at risk of developing mesothelioma. Anyone doing
building construction, repair, or maintenance is potentially at risk.
Home remodelers represent a new wave of victims, and many asbestos-abatement
workers are being exposed as well, because of improper procedures or equipment.
Second-hand exposure still accounts for a significant portion of cases.
Physicians can make a difference for mesothelioma patients by:
Understanding the symptoms and available treatments for the disease.
Advocating for asbestos disease research, a complete ban on asbestos importation
and use, and enforcement of safe, thorough abatement processes.
Arguing for valid medical standards in asbestos-liability legislation.
At a recent medical symposium, I learned that newer treatment regimens
for mesothelioma are paying off with an increase in survival. Many patients
can now expect to live 10 years or more following diagnosis. The medical
community should welcome this significant change in outlook and apply
the same optimism and determination that many of my fellow patients have
shown. As one surgical oncologist at the symposium said, "If you
have mesothelioma, I can no longer give you a death sentence."
Godleski, "Role of asbestos in etiology of malignant pleural mesothelioma,"
Thoracic Surg Clin, 14;4:479-487 (2004)
J Hodgson et al, "Expected burden of mesothelioma mortality in Great
Britain from 2002 to 2050," Brit J Cancer, 92;3:587-593 (2005).
*** POSTED NOVEMBER 10, 2008 ***