Big deal, huge fun, great music, Hollywood icon

January 26, 2007

PACIFIC HEART LUNG & BLOOD INSTITUTE

 

Invites you to an asbestos cancer research FUNdraiser on Saturday, February 10, 2007, featuring Grammy winner and jazz trumpet virtuoso, Chris Botti. Jordan Zevon will open the night as a tribute to his rock-n-roll father, Warren Zevon, who succumbed to mesothelioma in 2003. Barbara McQueen will be on hand to sign her book, “Steve McQueen: The Last Mile.” Barbara lost Steve, the international movie legend, to mesothelioma in 1980.

 

Get details at www.phlbi.org and RSVP early!

 

Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet. Click here to get Details and RSVP to Pacific Heart Lung &

 

Email Jessical Like or call 310.622.4960
Don’t miss this magical, musical evening!


Conversation with a union giant

January 24, 2007

The Times, They Have ‘a Changed
A Conversation with Greg Deblock

Picture the 1970’s: jobs on the decline, unrest in the steamfitters’ union about job security, dissatisfaction with the leadership, and upheaval from Vietnam, Watergate, and the oil shocks.

Those were the tumultuous days in which Greg Deblock cut his teeth on union politics. The retired business manager and organizer from Steamfitters Local 235, which later became UA Local 290, spends more time than he wants looking back these days. In November, Deblock was diagnosed with malignant mesothelioma, a cancer of the lung linings caused by asbestos.

He is now struggling to find specialized care in Portland. Despite the area’s status as a hotspot for mesothelioma due to its historic shipbuilding and paper mill industries, the closest treatment centers with doctors who specialize in mesothelioma are in Seattle and Los Angeles.

According to Mike Fahey, former Executive Secretary of Metal Trades Council of Portland and the Vicinity, “Greg was always respected by the people he represented and the employers he negotiated with. He was fair. He had integrity and was greatly liked. He was a welcome addition to any contract negotiations, and respected by the membership because he never forgot where he came from. Greg Deblock was a man who remembered what it was like to carry a lunch bucket and punch a time clock.”

Deblock began as a dispatcher with steamfitters Local 235 in 1976. His popularity led him to be elected as financial secretary/treasurer in 1977. Deblock became interim business manager when Matt Walters unexpectedly died, and then became business manager at the next full election in 1980. Unemployment was high and the union was in debt, but Deblock was able to bring it into the black.

His best memories about the job? “Helping people,” he says without hesitation. “You could use your position to resolve disputes, negotiate on behalf of the membership, fight for higher wages—we negotiated the highest percentage wage increase we’d ever had. I’d go talk to other party regarding problems with the work site, or maybe a worker had a personal problem and needed help, and I’d work it out with the other party. Helping our members was at the top of my priority list and it gave me the most satisfaction. I have sat on numerous boards and commissions and used those positions to the benefit of our members and organized labor as a whole.”

Times, however, have changed. “The biggest change is skill development. Steamfitters today have more skills. While the job of steamfitter continues to involve the big pipe fitting type of work, the methods of doing so have also changed. We have evolved into the high tech area of manufacturing., which requires added skills. We have been able to pass these skills on to our members through our state of the art training center, thus making the Portland area one of the premier high tech areas in the world that possesses the skills necessary for high tech manufacturing. Along with these skill developments are the management of those skills. So you see the times have really changed.

“This area is saturated with high tech; Intel, IBM, Xerox, and many others, and the work is more technical than it used to be. You deal with different kinds of welding, high orbital welding instead of plain arc welding. Pipe systems are also designed differently because of the electronics involved. Now valve systems are all high tech, electronic, and automatic, and often as not controlled from remote locations or via satellite.

“For labor the biggest change is the actual amount of physical labor. Nowadays a steamfitter’s got to have a license to work on boiler  high pressure piping and vessels, licenses for high tech orbital welding, low voltage licenses, and others as well.

“Labor relations have improved, too. We used to be more adversarial, but we don’t see so many strikes because we’ve been able to negotiate contracts that work around them for the benefit of management and labor alike. I’d say there’s been a meeting of the minds: in order to get his work done the employer has got to have skilled people. He’ll go bust without them, it’s been proven time and time again. as we keep adding the skills required by the industry, we become more valuable as a work force and can command a relatively higher standard for ourselves and our families.”

When asked about the future, Deblock thinks it’s pretty clear: “More high tech. More skills in electronics and microprocessing. Less physical demands, more high tech skills if we want to stay in the business, and any other skills the future may require.”

In order to treat his medical condition, Deblock is considering a trip to Los Angeles where he can consult with Dr. Robert Cameron, a mesothelioma surgical expert at UCLA. “I wouldn’t even know about Dr. Cameron if my lawyer, Roger Worthington, hadn’t introduced me. It’s too bad the local doctors haven’t responded to the asbestos epidemic here in Oregon.”

Dr. Cameron, Chief of Thoracic Surgery at UCLA, is also the science advisor for the Punch Worthington Research Laboratory, which is investigating ways to reduce risk, diagnose and treat occupational diseases, such as mesothelioma. The PWR lab is named after Punch Worthington, Ph.D, a long time union organizer and asbestos investigator from Salem, Oregon. For more information, see www.phlbi.org.


Profile in courage: Tom Reed

January 22, 2007

Union Insulator with Iron Fists, 56, Teams with Dr. Cameron to Pound Mesothelioma

The great outdoors southeast of Tacoma left an early and permanent stamp on Tom Reed. One of twelve children, he grew up and lived most of his life in Puyallup, Washington. The son of a career insulator, Tom knew that he wanted to follow in the footsteps of his dad. When he graduated from Puyallup High School in 1968, his father encouraged him to get on the apprenticeship waiting list for Local 7. That summer he worked as an insulator’s assistant, and his career seemed laid out.

The War Years and Fists of Iron

By the fall of 1968, however, our nation’s involvement in Vietnam had become full blown war. With thousands of young Americans answering their country’s call to serve, Tom took the initiative and enlisted in the U.S. Coast Guard. The hazardous nature of working four years on the open seas as a boatswain’s mate on the cutters Taney and Sweetbriar was almost as hazardous as Tom’s land duty: he became a boxer, and by the end of his service had been crowned the East Coast Light Heavyweight Boxing Champion. Never bothered by his lack of formal training or technique, Tom battered his opponents down onto the mat with sledgehammer punches born of grit, determination, and an iron constitution.

Honorably discharged from the coast guard, Tom returned to Washington in the fall of 1972. Within months his name came up on the waiting list and he was accepted into the apprenticeship program of Asbestos Workers Local 7.

Following in his Father’s Footsteps

The same grit and determination that had carried him through countless slugfests in the ring found Tom hard at work in the Pacific Northwest, installing asbestos insulation on mechanical systems at refineries, paper mills, chemical companies, breweries, and Boeing facilities in northern and central Washington. The work was hard and the hours long, but Tom loved it. There is a particular satisfaction that children feel when they follow in the trade of a parent, and no one was prouder than Tom to work side by side with father on many jobs. As the only one of his father’s 12 children to work as a union insulator, Tom’s pride was even more acute.

In 1999, after spending ten years as apprenticeship coordinator for the union, Tom worked as labor superintendent for various companies through 2005. Then in 2006 he decided to return to the tools–an extraordinary opportunity had arisen: his son Joshua had followed in Tom’s footsteps and was now a journeyman insulator. The chance to work side by side with Josh, the third generation of insulators in the Reed family, was too much for the proud father to pass up. Just as his father had taken pride working with Tom decades before, Tom knew that working alongside his son would be the perfect way to finish out his career. Tom’s father Karl had worked as an insulator until he was 71 years old. Tom foresaw many good years alongside with his son.

Home on the Land

Early in his career Tom had saved his money and purchased an eighteen-acre tract of land in Graham, Washington. The mature trees, three beautiful ponds, and the rural unspoiled surroundings made this the perfect place for Tom and his wife Lorraine to marry, and in subsequent years this was their corner of the world, where he and his wife could really feel like they had “gotten away from it all.” In July 2000 Tom’s daughter Icel followed the family “tradition,” and she got married amidst the idyllic natural setting.

Tom and Lorraine lived on the property for several years in modest circumstances, and then one day Tom enlisted the help of his nephew to build a dream home overlooking the pond. After Icel’s wedding, the praise and compliments on the beautiful ceremony poured in. Tom and Lorraine sat down, looked at the numbers, and put together a business plan that would let them rent the property for weddings and receptions.

Just as he had taken a straight ahead, two-fisted approach to boxing and to his career as an insulator, Tom took on the work of developing his property with the same earnestness and commitment. Seated atop his trusty tractor, this gentle husband, father, and now grandfather worked hard to groom and develop his and Lorraine’s “little piece of paradise.”

Nothing made the work more satisfying than having the grandchildren come visit. Fishing in the pond, taking tractor rides around the property, or just spending quiet time on the porch with his children gave Tom a happiness and sense of peace that he could scarcely believe was his. Working alongside his son, spending time with his grandchildren, and working at the property had made his life complete.

Shattered Dreams

Tom and Lorraine’s idyllic life took a body blow in July 2006 when Tom was diagnosed with malignant pleural mesothelioma. This aggressive asbestos cancer had attacked the linings of his lungs and threatened everything that Tom and Lorraine had worked so hard and so carefully to build.

To make matters worse, their local doctor did not give them hope. His advice was simply to “take a long cruise to Tahiti.”

Stunned, Tom couldn’t believe that the sum total of his treatment options was to give up all hope and resign to doomsday. Tom Reed decided to do what he had done his entire life when faced with hard work or adversity: he pulled on the gloves. This was going to be the battle of his life, and Tom didn’t intend to be sitting ringside. He intended to swing a leg over the ropes and climb in.

As union men often do, when word got out about Tom’s illness, his union brothers lent a hand. The asbestos workers had recently attended a union meeting where Dr. Robert Cameron, scientific advisor to The Pacific Heart, Lung and Blood Institute and chief of thoracic surgery at UCLA Medical Center had given a presentation concerning recent developments in the treatment of mesothelioma. This key information allowed Tom to get a life-saving referral to Dr. Cameron.

After arranging an expedited office visit, Dr. Cameron was able to deliver something Tom and Lorraine had been praying for: good news. Tom was eligible for an innovative surgical procedure developed by Dr. Cameron known as a pleurectomy with decortication. Rather than removing the affected lung, Dr. Cameron would go into Tom’s chest, strip out as much of the cancer as possible, and leave Tom with two functioning lungs to continue the battle.

Coming out Swinging

Round One commenced on September 7, 2006, and this time it wasn’t just Tom who had donned the gloves. Dr. Cameron had, too. The pleurectomy with decortication procedure involved meticulous removal of the tumor while leaving the lung lobe intact. Within days Tom was walking the halls of UCLA Medical Center. Not content to let the cancer get off with a pounding, Tom and Dr. Cameron delivered Round Two: a second series of vicious blows to the tumor via six weeks of radiation therapy.

It was at this juncture that Dr. Cameron’s innovative procedure made the difference between life and death. During the radiation therapy, Tom developed multiple blood clots in his healthy lung, and pneumonia in his left lung. Tom was kept alive by the lung which, less than two months before, had been surrounded by the mesothelioma tumor. The physicians who treated Tom candidly told him that had he opted for the procedure of simply amputating the cancer-surrounded lung, he would never have survived the pneumonia.

Hoping for the Knockout Blow

Tom and Lorraine know that the fight hasn’t ended. Mesothelioma is a tough and battle-scarred opponent who rarely gives up even in the face of a full-scale barrage. But Tom’s gloves aren’t about to come off. Working with Dr. Cameron has instilled in him the knowledge that mesothelioma can be treated, that his treatment plan will continue to yield additional days, additional weeks, additional months, and additional time to spend with his family and enjoy his life.

Tom’s assessment of Dr. Cameron and the law offices of Roger Worthington are to the point: “Dr. Cameron and his staff have been exceptional and compassionate to me and my family. I was so impressed with them. Roger is a hard charger, and his staff has been a tremendous help to me. Roger and John have really worked hard to get me medical treatment and to get legal justice. They made a big difference.”


Protecting mesothelioma patients from deposition abuse

January 19, 2007

Justice for a mesothelioma victim often depends on his deposition. The patient, the defense lawyers, and our guys sit down together and videotape the patient’s testimony. We get a chance to ask questions, and the bad guys then have a turn. The whole thing is videotaped.

The procedure is fundamental to justice. The patient describes his exposure to asbestos, we ask him questions to clarify key points, and the defense then has a chance to poke holes in his story. Everybody gets a say, and the jury can watch the videotape and make up their own mind as to which story they believe.

But when does fair questioning become abuse? How much questioning is too much? What’s the difference between challenging someone’s story and physically trying to kill them through extended, abusive, exhausting harassment—especially when they may be struggling through the final painful stages of a killer like mesothelioma?

Makers of asbestos often capitalize on their victims’ frailties by making the questioning as drawn out as possible. The ensuing exhaustion may impair the victim’s ability to recall and effectively testify. More evil still, this strategy weakens the already frail victim and hastens his death. There is literally a financial incentive to kill: California law pays greatly reduced damages when the plaintiff is dead. The asbestos companies turned a cheap buck when they poisoned the worker, and they save money a second time ‘round by killing him to reduce the damages.

Some states shield mesothelioma victims from abuse. Texas limits defense questioning in asbestos cancer cases to six hours. In California, though, it’s still open season on the weak, the sick, and the frail.

Roger Worthington has long advocated reasonable limitations on the length of time that asbestos companies can grill their victims. The voice of the patient and his advocate, however, have historically been shouted down by the corporations that made and sold these poisonous products in the first place.

We know that victims of asbestos cancer need to conserve their energy to fight their disease, so we fight aggressively to limit abusive questioning. Where possible we obtain court orders that limit the defense’s abusive strategy. Treating doctors who are committed to the well-being of their asbestos cancer patients often help us with the declarations that judges need to protect our clients from harassment.

California lets a judge enter orders “as justice requires” to protect any party or person from “unwarranted annoyance, embarrassment or oppression, or undue burden and expense.” Harassment by defense attorneys directly affects the health of an asbestos cancer victim.

In a recent declaration submitted for one of his patients, Dr. Robert Cameron of the UCLA School of Medicine explained the relationship between questioning and the health of an asbestos victim:

“Fatigue has been identified as significantly interfering with quality of life in people of all ages who have cancer, regardless of diagnosis, treatment or prognosis. Although there are established medical interventions for most cancer-related symptoms, there are only limited medical treatments for fatigue. Physical and emotional stress both contribute to a cancer patient’s fatigue.

“Generally, fatigue becomes progressively worse as a malignancy progresses. Fatigue can lower a cancer patient’s concentration ability, which can seriously affect the patient’s capacity for learning, problem solving, and performing even menial everyday tasks of living. The mental storing and recalling of information, called memory, can be affected by attentional fatigue and/or emotional or physical stress. Prolonged emotional or physical stress can adversely interfere with memory and the ability to focus meaningfully on tasks.

“A prolonged legal deposition over a period of days, in which the cancer patient is daily subjected to hours of often repeated detailed questions by dozens of lawyers regarding events that may have occurred 30 to 50 years ago, can increase the patient’s stress level and exacerbate fatigue, with its attendant negative consequences to the patient’s cognitive status and cancer fighting ability.

“In medicine, physicians are obligated to relieve suffering. If we fail to do this, we are at risk for prosecution under the Older Americans Act, which was reauthorized in 1992 with a new Title VII, Chapter 3 to specifically prevent abuse, neglect and exploitation of the elderly (defined as someone 60 years of age or older). If the failure to relieve suffering itself is cause for legal action, then I have to wonder how this important Act would view the discomfort, fatigue, and frank pain visited on a terminal mesothelioma patient during the course of an unregulated, unlimited and burdensome series of legal depositions. In my opinion, such an unlimited deposition could and should be construed as unnecessary, cruel, unethical, and inexcusable—something that certainly should be considered “elder abuse” – especially if less intrusive means of obtaining a history are available.

“Mesothelioma is regarded as one of the most painful tumors known to man. In order to maintain any quality of life, it is essential that the patient avoid undue and avoidable stress in order to maintain sufficient strength and vigor to eat, breath, and continue fighting this horrific disease.”

Many judges will conclude that unlimited defense questioning constitutes oppression under the law and will impose strict limitations. However, because there is no “hard and fast” rule that every judge is required to apply consistently, the matter is left to each individual judge’s discretion. As a result, even under the same set of facts, there are some judges who are willing to ignore the destructive impact of this strategy and refuse to impose limitations.

The inconsistency of judges’ rulings on this issue emphasizes the need for uniform rules on defense deposition questioning. The Law Offices of Roger G. Worthington is fighting to have county-wide rules adopted. Not surprisingly, our efforts have been strongly opposed by asbestos companies and from the attorneys hired by the asbestos companies who stand to lose substantial profits if limits on questioning are imposed.

We will continue to fight for changes in the law which will stop asbestos companies from placing economic interests ahead of consumer health. We will continue to fight on a case by case basis for limitations on deposition questioning so that victims can focus on fighting their disease and spending precious time with their families.


Promises kept: bankrupt asbestos corp. makes good on pledge

January 19, 2007

Imagine having your neighbor dump a load of toxic waste in your backyard. Wouldn’t your first priority be for him to clean up the mess?

After six years, a now-bankrupt asbestos manufacturer has made good on its pledge to help fund mesothelioma research. The Mesothelioma Applied Research Foundation received $432,000 from Owens-Corning over the holidays, and it happened because of teamwork, persistence, and a vision.

About 3,000 Americans are diagnosed with mesothelioma every year. This asbestos-caused cancer most often results in a swift and agonizing death. Why? Because since the tumor was first recognized in the 1940’s, no serious effort has ever been made by industry and government to unlock the scientific secrets to cure the cancer.

This doesn’t mean that money has been lacking. Since the 1960’s, when Americans began demanding in court that the companies who poisoned them pay restitution, billions of dollars have changed hands. In the 1990’s, when the poisoners began to file for bankruptcy protection so they could escape asbestos liability, billions more changed hands. Now that trust settlement funds have been established, billions more will flow.

But money to “clean up the mess”—to find a means of detecting, inhibiting, and curing mesothelioma? No way.

In 1999, asbestos lawyer Roger Worthington had a vision: bring together scientists, doctors, lawyers, and asbestos companies to fund mesothelioma research. His simple premise: put the money into research and work to find a cure by creating MARF. Two of the largest asbestos manufacturers, W.R. Grace and Owens-Corning, joined the board because it made good business sense. Scientists and surgeons like Dr. Harvey Pass and Dr. Robert Cameron came aboard. Owens-Corning pledged one million dollars to the new organization for asbestos cancer research. The time had come for people with often opposing interests to focus on the one shared goal: cure mesothelioma.

Like other good ideas, the merits of Worthington’s vision could be measured by the resistance it met. At a Hawai’i conference in 1999, Worthington unveiled the new foundation, replete with its respected board of scientific advisors and asbestos manufacturing representatives. The status quo was appalled, and conference attendees derided the project as a “sell-out.” Worthington was literally shouted off the podium.

The “sell-out,” of course, was what had been happening to mesothelioma patients for fifty years: little new research, no coordinated strategy, and no standard of care for their illness. As Worthington pointed out, “Sick people deserve treatment, and mesothelioma deserves serious research. MARF is about curing mesothelioma. What have the critics done to advance the cause?”

Over the history of MARF, the great irony is that the ones who have suffered most – the patients and their friends and families – have given the most. MARF has received almost 2,000 donations from relatives and loved ones of mesothelioma patients. These include a substantial number of large, memorial contributions that directly increase MARF’s ability to fund research. Barbara Hoffacker donated $150,000 in memory of her husband, Hans, and was instrumental in the formation of MARF’s Family Advocacy Board, a patient network support group.

Jim Seiler, a management consultant in San Juan Capistrano, California, donated $100,000 to MARF. Jim lost his wife Linda, an actress and singer, to mesothelioma in 2001. Oncologist and MARF Science Advisory Board member Dr. Claire Verschraegen recently donated her entire deposition fee to MARF after testifying for one of her mesothelioma patients. The list of donors and those who have given time and expertise is graced primarily by those who have suffered from or witnessed first-hand the ravages of the disease.

The hardest part hasn’t been getting help from ordinary Americans who have been poisoned and killed through no fault of their own. They’re the first to volunteer, just like the men and women at Ground Zero. The hardest part has been getting lawyers who’ve made billions, and corporations who’ve made tens of billions, to cough up anything at all.

Owens-Corning made its first payment of $100,000 in 1999, proving their intent to help look for a cure. But when bankruptcy protection under Chapter 11 beckoned, Owens-Corning withdrew beneath the tent. The remaining $900,000 was never collected, and not because the company was on hard times. Their business was strong enough to afford a NASCAR sponsorship, to the tune of $6-$18 million per season. Lawyers who had sharply criticized the MARF mission continued to work the courtrooms for substantial mesothelioma verdicts, but refused to help fund research. One study shows that after fees and costs, only 40% of the estimated $70 billion consumed by asbestos litigation wound up in the victims’ pockets. The rest went to trial lawyers, defense lawyers, and experts. No one can argue that this is a sensible way to attack the public health problems of asbestos cancer, especially when the bar doesn’t put some of its profits back into research.

The combined value of the bankruptcy debtors, as more companies sought to hide from their obligations to asbestos victims, was over $60 billion. Although the funds were ostensibly set up to help asbestos victims, much of the kitty was being wasted on bankruptcy lawyers and accountants. An analysis of six large asbestos company bankruptcy claims shows that a total of $1.3 billion was spent on legal fees and costs alone, without a single cent put away for research to “clean up the mess.”

In the face of these numbers and with the support of the MARF board, Worthington began to lobby for some old-fashioned economic justice. “‘Billions for bankruptcy lawyers but not one cent for research’ just didn’t seem like much of a motto,” he says. “We should fund mesothelioma at the same rate we fund other types of cancer research, and these trust funds have the resources to do it. We spend less than $3 million on mesothelioma research, with an annual national budget for other cancer research in the billions, or tens of billions. That’s not fair, and it’s bad health policy, because the number of people who die from this lethal illness is on the rise.”

Since no national disease registry for mesothelioma exists, the number of victims is likely much higher than 3,000, simply because the illness is so often misdiagnosed. Research holds the key. In the same way that an 18-year, $29 billion investment in AIDS turned it from a uniform killer into a manageable illness, mesothelioma victims stand to benefit from more research dollars and a long-term commitment to early detection, prevention, and treatment.

The tobacco trust fund settlement set aside $730 million for cancer research and smoking prevention. Similar allotments for asbestos cancer research should be aggressively pursued, and MARF’s holiday check from Owens-Corning proves that settlement fund managers can be convinced.

Worthington’s conviction that a promise made was a promise that deserved to be kept infected MARF executive director Chris Hahn, who squarely put the Owens-Corning $900,000 IOU in his sights.

Hahn and a pro-bono lawyer from Simmons Cooper turned on the heat, making smart and insistent arguments to the Owens-Corning settlement fund that research deserved a seat at the table. For the first time in history, a debtor trust cut a check to a nonprofit foundation whose mission is to cure mesothelioma. Those naysayers who blasted the MARF mission almost eight years ago, meanwhile, have yet to give the foundation a dime.

If one bankrupt debtor can donate to mesothelioma research, so can other debtors, so can trial lawyers, so can defense lawyers, and so can the federal government. Debtor trusts have an obligation to fund research and give beneficiaries the right to choose whether to set aside a percentage of the trust proceeds to asbestos cancer prevention, detection, treatment, and cure.

It took almost seven years for this landmark check to clear, and the corporations that poisoned millions have a duty to compensate, prevent, monitor, and treat. There are 40 million Americans walking around with asbestos time bombs in their lungs and linings. The poisoners and the lawyers who have profited from the lawsuits have a moral and legal duty to put out those fuses before they blow, and to treat the patients if the bombs go off. It’s time they cleaned up their mess.

Hahn’s commentary on the timely holiday payment? “Given OC’s huge asbestos liability, our almost fifty cents on the dollar recovery is excellent, and there remains a small possibility that further payment will be made. We saw an effort on both sides of the often stormy litigation to stop aiming their guns at each other and for a moment point them at the common enemy, the disease itself.”


Who decides?

January 18, 2007

Every day in the U.S. about ten new patients are diagnosed with mesothelioma. Those numbers will continue to increase for the next decade. The choices they make about their treatment will determine the length and quality of their life. Surviving this rare, poorly understood, aggressive asbestos cancer depends on information and speed.

Clinical doctors play the most critical role in guiding meso patients on their treatment path. Although local or family doctors may see few mesothelioma patients, they are in a unique position to help. That help is straightforward: having knowledge about the availability of options; knowing that there are a handful of expert surgical oncologists nationwide; referring the patient to a mesothelioma specialist (which usually requires travel); and helping ensure that, in the case of an HMO, the patient can get the best available care “out of plan.”

Since economic factors can influence an HMO’s willingness to accept a request for out of plan services, treating physicians can help lay the groundwork for getting the patient care with a mesothelioma specialist.

Out of Plan Services

Even within the same HMO, requests for out of plan services with regard to mesothelioma can be treated differently, and it is hard to know exactly how the decision will be reached. The treating physician can influence that decision by focusing on the medical issues and on the patient’s quality of life. Cutting edge mesothelioma treatment options focus on maintaining and extending life, and these treatments are available at only a handful of institutions, such as the UCLA Geffen School of Medicine.

The Key Questions

When an HMO turns down a request for out of plan services, the patient can appeal. Federal regulations require an HMO to pay for non-plan services if the services are medically necessary and not available by an in-plan provider.

What is “medically necessary,” and who decides? These are the ultimate questions. Even among mesothelioma specialists, there is great debate over the best course of treatment: Chemotherapy alone? Chemotherapy before surgery? After? During? Which chemotherapeutic drugs? What about targeted biological therapies? Clinical trials? What type of surgery—pleurectomy with decortication, talc pleurodesis, or extrapleural pneumonectomy? Radiation? And on it goes.

Choosing between these and many other options is made harder because for mesothelioma there is no standard of care. One byproduct of the illness’s neglect by federal research funding has been that standardized treatments and procedures remain undeveloped because of the relative scarcity of a statistical database, clinical trials, and peer-reviewed journal articles on mesothelioma.

Another crucial issue complicates the matter. The architecture of every mesothelioma tumor is unique. It’s never a cookie-cutter operation, never a rote matter of switching out spark plugs. The skill of surgeons performing a pleurectomy has much to do with the number of times they have done the operation. A pleurectomy poorly done is worse than no pleurectomy at all.

Amidst this thorny thicket of treatment issues, who decides? The insurance clerk assigned to the file? A doctor or panel of doctors appointed by the HMO? How about the patient? Does the patient have a role in deciding the best course? Should the patient have a voice in matters of her own life and death?

Rubber—Please Meet Road

We represent a woman we’ll call Jane who recently was diagnosed with mesothelioma. For her, the questions of medical necessity and of who decides were not academic. They were questions that determined how, and how long, she would live.

Her local doctor believed that the decision was his, and denied Jane’s request for out of plan treatment. The insurance company thought the decision was theirs. Though the HMO had approved a 49 year-old patient’s request for the same out of plan mesothelioma treatment, when Jane requested life-extending services at UCLA, the insurer declined. The implications were that she had “lived long enough” and that Jane’s treatment was not medically necessary.

Jane believed that the decision was hers. Seventy-eight years old, extremely active, and continuing to work full time even after her diagnosis, Jane knew that she had a lot to live for, that she had a lot of life left in her, and that the out of plan services were medically necessary if she wanted to live.

Our law firm committed itself early on to helping Jane get the treatment she needed, and helping her run the bureaucratic and legal gauntlet at the HMO.

Jane’s Decision

Jane’s experience with mesothelioma mirrored that of many patients with this disease: after diagnosis she turned to the Internet and began learning. She concluded, after careful reading and analysis, that her best chances lay with an innovative surgery called pleurectomy with decortication. Unlike surgeries that amputate the lung, the pleurectomy strips away only the cancerous lung lining and the tumor. The actual lung is spared in a meticulous operation that leaves patients two healthy lungs with which to battle the illness.

Jane also learned that the surgery is intricate, can take eleven hours, and is done by only a handful of surgeons. The world’s pre-eminent practitioner, she learned, is Dr. Robert Cameron, chief of thoracic surgery at UCLA Medical Center. Dr. Cameron has performed the procedure on hundreds of mesothelioma patients, and the survival rates for his patients are two to three times the median survival of 12-18 months. Jane’s decision-making process was simple: pleurectomy with decortication performed by Dr. Cameron meant more life and a higher quality of life compared to other available treatments.

We submitted a report from Dr. Cameron in which he described the unique aspects of the pleurectomy with decortication surgical procedure, and he noted that in order to effectively perform the surgery experience was critical: a minimum of fifty operations. Without questioning the qualifications or the ability of the HMO’s medical team, Dr. Cameron did question the extent to which the insurer’s doctors had even general experience with mesothelioma. Jane’s doctors had taken almost two years to correctly diagnose her mesothelioma. More importantly, had any of the insurer’s doctors ever performed a pleurectomy? If so, how many?

The HMO’s Decision

These factual questions should have set the parameters for examining whether or not the HMO could provide the services. But that examination never happened. The insurer simply decided that the procedure could be performed in-plan. Had its surgeons ever done a pleurectomy? No one knew.

To Jane, the decision was senseless. The insurer had no financial motive to deny her request, since a pleurectomy costs no more than a complete removal of the lung. The insurer never disputed the medical necessity, and never demonstrated availability in-plan other than to say “we too have thoracic surgeons.” The key question of whether those surgeons had ever performed a pleurectomy was pushed to the side.

We appealed the decision, which was reviewed within the HMO. Now the decision fell upon yet another party, a staff reviewer. The reviewer chose a simple and clear standard: if the HMO surgeon performed this operation, then he should be offered the opportunity. If he did not feel qualified, then Dr. Cameron should be used and the health plan should pay. In order to plug facts into the standard and make a decision, the reviewer asked the insurer to answer three questions:

1. How many pleurectomy and decortication procedures had their surgeon performed?
2. How many of these procedures were for the treatment of malignant pleural mesothelioma?
3. Was the surgeon considered an expert in the treatment of mesothelioma?

The HMO refused to answer the questions. It simply asserted that experience with the procedure was unnecessary, and that identical care was available through the HMO. The insurer clearly felt the decision was theirs, not the reviewer’s. Yet their response voided the entire rationale of having an appeal, because the issue of experience was precisely the question on which the decision to approve out of care treatment would turn. Dr. Cameron gave compelling evidence that for this operation, experience was key. The reviewer agreed, and asked the insurer to demonstrate its experience. The insurer evaded the medical matter and simply asserted that experience was not required under the terms of the insurance policy—in effect, no answer at all. As a follow-up, the insurer forwarded the reviewer a note from a doctor opining that any board certified thoracic surgeon could perform a pleurectomy well. Absent explanation or analysis, this was like saying any certified airplane mechanic could repair an F-11.

The reviewer got the message: his employer didn’t want this one done out of plan, period. Despite the failure of the HMO to respond to his questions, the reviewer upheld the insurer.

The Judge’s Decision

Jane armed herself with the documents that showed how the insurer had avoided the reviewer’s questions and indirectly pressured a decision. Then we appeared before a judge and submitted Dr. Cameron’s testimony under oath. The testimony described the unique challenges and difficulties presented by a pleurectomy, and detailed his extensive experience with the procedure.

This testimony showed that, much as the medical reviewer had originally concluded, the background and experience of the physician is a crucial factor in deciding whether the services are available through the HMO. It was not enough to simply say, “Oh yeah, we do that.”

The judge disagreed. He considered the testimony irrelevant because it related to a different patient—even though the procedure and the illness were the same. The judge then said that Jane had failed to prove a negative: she had not established that the HMO surgeon did not have experience performing the pleurectomy. Rather than requiring the insurer to prove that its surgeon was experienced, the judge shifted the burden onto the ill and waning patient to prove that the doctor was not. Lacking power to subpoena or otherwise access records about the surgeon, Jane had been given an impossible hill to climb.

More than two months passed and the judge still had not ruled on Jane’s case, despite repeated pleas for a speedy answer.

The Tumor’s Decision?

As every mesothelioma patient learns, speed means everything. By the time the cancer is properly diagnosed, most patients’ symptoms have significantly progressed. A month talking with Doctor A, two months arguing with Insurer B, a couple of months waiting for Judge C to make a ruling…these delays quite literally put the decision in the hands of the tumor. This decision-making gauntlet is run by thousands of patients every year. As people wrangle over authority to decide, the tumor grows, strengthens, and crushes the life out of its victim.

Jane refused to idly stand by while paper was pushed from one desk to the next. She knew that whatever the insurer did, she would ultimately decide. It was her life.

After consulting with Dr. Cameron, Jane underwent the surgery and returned to work following the procedure. She scoffs at the idea that, because she is now 79 years old, she is less deserving of the additional life she hopes to receive from the surgery. She scoffs at the idea that the decision is anyone’s but hers. And she scoffs at those who suggest she should not do everything in her power to overcome her disease.

The Big Picture

Caring for mesothelioma patients means more than identifying the best treatment. It also means aggressively pursuing those treatments in the face of significant opposition, legal and bureaucratic. In Jane’s case, it was a choice of good versus bad, with no shade of gray. Dr. Cameron was clearly the best choice.

For other patients the options can be much less clear, especially when the out of care service is far from their home, when it is much more expensive than the HMO service, or when the choice of therapies involves various novel treatments, none of which has a statistical track record.

The alliance of patient, advocate, and physician—with input from the insurer, and the final decision resting with the patient—is the best model of all.


Cutting edge treatment at UCLA School of Medicine

January 16, 2007

Mesothelioma kills 2,000-4,000 Americans each year. This aggressive cancer with a grim prognosis is caused by exposure to asbestos and often attacks workers in the building trades. Cutting-edge research and treatment to detect and manage this illness is available right here in Los Angeles. The Pacific Heart, Lung & Blood Institute (PACHLAB) and its Punch Worthington Research Laboratory (PWR Lab), in collaboration with the David Geffen School of Medicine at UCLA, is at the forefront of treating this disease.

lab_dedication

Dr. Robert Cameron, the surgeon and scientist who directs the PWR Lab, has put together an aggressive agenda to tackle mesothelioma head-on. By focusing on prevention, early detection, and treatment for workers with mesothelioma, Dr. Cameron has become one of the world’s experts on this disease.

The PWR Lab’s Risk Reduction Program is focusing on prevention of mesothelioma in workers exposed to asbestos and early detection through breath and blood tests. The Lab’s Mesothelioma and Asbestosis Treatment Program is seeking to improve therapies for people with already existing disease.

Since it can take up to 50 years for mesothelioma to develop, a golden opportunity exists to interrupt the asbestos-induced changes that progress to cancer. This same type of approach has helped improve the cure rate for colon cancer, cervical cancer, and possibly even breast and lung cancer. This approach likely holds the greatest promise for people at risk for mesothelioma.

Since asbestos inflames the lining of the chest (pleura), the lab’s premier prevention program is testing agents that inhibit inflammation as a means of preventing this dreaded disease. Interrupting the long cycle of inflammation could break the progression of changes that lead to cancer. Indomethacin, celecoxib, aspirin and other agents may hold the key. The lab is recruiting participants through the Asbestos Workers Union and affiliates, particularly workers and their families residing on the West Coast, to collect exposure, medical as well as other relevant information for health monitoring and to include in testing of promising agents. Dr. Jennifer Mao, one of PACHLAB’s scientific advisors, is collaborating with the PWR Lab to test celecoxib right now. This study is open for workers who have asbestos exposure and also who have smoked cigarettes in the past.

The lab will also study asbestos tumors in animals to better understand how chrysotile asbestos, which makes up 95% of all asbestos in the North America, causes mesothelioma. With a better understanding of the changes that chrysotile asbestos produces, there is an improved chance of finding ways to treat and prevent mesothelioma and asbestosis, as well as ways to treat lung cancer, which also occurs as a result of asbestos exposure.

There is no reliable test to detect mesothelioma at an early stage. Imaging tests, such as x-rays and CT scans, are not satisfactory. Screening tests exist for breast cancer, colon cancer, prostate cancer, and lung cancer, and have resulted in better diagnosis of early disease and improved cure rates. Early detection for mesothelioma could lead to similar benefits: doctors could attack it early, rather than waiting until full blown symptoms develop.

Punch Worthington Lab at UCLA

The PWR Lab’s Early Detection Program is a high priority. One promising test involves identifying evidence of mesothelioma and even of asbestos exposure through markers in workers’ exhaled breath or blood. The breathing test is particularly exciting because it has already had positive results in lung cancer, studies which Dr. Cameron, PWR Lab’s director, has helped accomplish. Other early detection techniques use blood and possibly tissue specimens.

Treating mesothelioma is difficult and takes an experienced team of professionals. Combinations of surgery, radiation, chemotherapy, and immunotherapy offer the best chance to extend life in a meaningful way, but given the deadly nature of the cancer, much work remains. In patients with other types of diseases, such as high blood pressure and diabetes, survival has been extended significantly through the use of effective “chronic” maintenance therapy. Dr. Cameron has pioneered a similar approach in mesothelioma. Life-long maintenance therapy is included to prevent the cancer from returning following successful initial treatment or to stop progressing cancers dead in their tracks if initial treatment fails. Importantly, maintenance therapies that are used or currently are being developed have minimal side effects and do not significantly interfere with the person’s lifestyle. The Punch Worthington Lab is committed to extending patients’ lives without compromising their quality of life.

One type of maintenance therapy for mesothelioma that has shown particular promise is long-term treatment with low dose interferon alpha, a cancer fighting drug normally produced by the body in small amounts. Dr. Cameron has led the way in using this in selected patients, some of whom currently are living without evidence of any cancer more than five years following their initial treatment. To put the numbers in perspective, patients treated with a combination of surgery, radiation, and interferon alpha have a overall median survival of 38 months compared to only 9-12 months with chemotherapy alone and 18 months with other treatment, such as extrapleural pneumonectomy.

Additional new treatment strategies are in the pipeline. One such therapy is the use of an interleukin-4 (IL-4) immunotoxin. Other novel therapies use compounds that inhibit the formation of new blood vessels that mesothelioma and all tumors need to grow. The development of new treatment strategies that are immediately available for current patients is long overdue, and the Punch Worthington Research Lab at the Pacific Heart, Lung, and Blood Institute is pushing the envelope of research because the lives of America’s working people are at stake, not only in the future but today as well.

Contact:

Dr. Robert Cameron: (310) 267-4612 or (310) 231-2130, email: rcameron@phlbi.org
Roger G. Worthington, Esq., (800) 831-9399, email: rworthington@phlbi.org
Information about mesothelioma: http://www.mesothel.com, http://www.phlbi.org