Here is a link to the Sonoma Medicine website with an article penned by my uncle about his experience fighting mesothelioma on the medical, legal, social, and political fronts. It is a worthy read.
I’ve also put the entire article below in case the link changes.
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 ascitesóno 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 with biopsies.
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 havenít 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 industryís 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 Iíd 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 ìconsortiumî 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 ìgolden years.î
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 victimsí organizations to develop a statement of opposition to SB 852, the ìFairness in Asbestos Injury Reform Act of 2005.î 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 Committee.
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 attorneysí offices, my wife and I sometimes felt we were acting out an episode of ìLaw and Order,î 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 peopleís 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 ìasbestos workersî 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, ìIf you have mesothelioma, I can no longer give you a death sentence.î
1. Godleski, ìRole of asbestos in etiology of malignant pleural mesothelioma,î Thoracic Surg Clin, 14;4:479-487 (2004)
2. J Hodgson et al, ìExpected burden of mesothelioma mortality in Great Britain from 2002 to 2050,î Brit J Cancer, 92;3:587-593 (2005).
Mr. Zygielbaum, a mechanical engineer, has worked in the aerospace, electric utility, and electronic manufacturing industries for more than 30 years.