My newspaper often barks at me. Like my dog, only silently. Something I read will reach out and grab my attention, whether I want it to or not.
The latest cacophony concerned fibromyalgia. Apparently, this “murky disease” is getting a lot of run of late, primarily because it is generating a lot of profits for the drug industry. Here is a story from the AP:
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WASHINGTON (AP) — Two drugmakers spent hundreds of millions of dollars last year to raise awareness of a murky illness, helping boost sales of pills recently approved as treatments and drowning out unresolved questions — including whether it’s a real disease at all.
Key components of the industry-funded buzz over the pain-and-fatigue ailment fibromyalgia are grants — more than $6 million donated by drugmakers Eli Lilly and Pfizer in the first three quarters of 2008 — to nonprofit groups for medical conferences and educational campaigns, an Associated Press analysis found.
That’s more than they gave for more accepted ailments such as diabetes and Alzheimer’s. Among grants tied to specific diseases, fibromyalgia ranked third for each company, behind only cancer and AIDS for Pfizer and cancer and depression for Lilly.
Fibromyalgia draws skepticism for several reasons. The cause is unknown. There are no tests to confirm a diagnosis. Many patients also fit the criteria for chronic fatigue syndrome and other pain ailments.
Experts don’t doubt the patients are in pain. They differ on what to call it and how to treat it.
Many doctors and patients say the drugmakers are educating the medical establishment about a misunderstood illness, much as they did with depression in the 1980s. Those with fibromyalgia have often had to fight perceptions that they are hypochondriacs, or even faking their pain.
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The article features a photograph of Fredrick Wolfe, Director of the National Data Bank for Rheumatic Diseases (whatever that is) and “one of the nation’s most prominent critics of fibromyalgia.” The “rest of the story” is available at the following link:
http://www.chicagotribune.com/business/sns-ap-fibromyalgia-drug-companies,0,535128.story.
Take a look at the AP article, and you will find a wealth of information about how disease and treatment are marketed to the general public in a Fox-News “you decide” format. You can discern the following from this article:
Some people (critics of fibromyalgia) regard the condition as “murky,” meaning shrouded in mystery and therefore unproven. In other words, bogus.
Two drugmakers, Eli Lilly (the Cialis folks) and Pfizer (the Viagra folks) are making so much money selling drugs to people with fibromyalgia, they are “donating” over $6,000,000.00 to “nonprofit groups for medical conferences and educational campaigns.” That is in addition to their advertising budget. Big bucks are at stake, which in the world of Global Corporate Healthcare, is much more important than actually helping people.
Whenever you see a comment such as, “Experts don’t doubt the patients are in pain,” followed by “Those with fibromyalgia have often had to fight perceptions that they are hypochondriacs, or even faking their pain,” rest assured there are plenty of “experts” (i.e. hired medical guns) calling people who claim to have fibromyalgia a bunch of crazy fakers. I was unable to get to the bottom of where Dr. Fredrick Wolfe and his National Data Bank get their money, but I think the people who have a vested interest in opposing funding for fibromyalgia research or, more importantly, compensation or coverage for its victims, is the leader in the clubhouse.
All of this is complicated by these apparent facts: “The cause is unknown. There are no tests to confirm a diagnosis. Many patients also fit the criteria for chronic fatigue syndrome and other pain ailments.” This means the doctors do not know what they are doing with this condition. For all their research, big hospitals and Wednesday golf games, they might as well be bleeding these people.
Several years ago, I attended a conference on fibromyalgia. A doctor friend of mine, Dr. Richard Rubin, was speaking. The conference was attended by a hundred or so people, mostly women, all of whom were desperate. At that time, no drug company had figured out these people had money and were willing to pay for anything that might make them feel better. Without Cialis and Viagra money supporting their plight, these people were on their own, fighting against the insurance industry. My bet is that those “critics of fibromyalgia” were insurance company goons, hired to prove that fibromyalgia did not exist, was a figment of the imaginations of deranged and tortured souls who may be experiencing pain, but whose pain was due to being slighted by their mothers. Why else would anyone be a critic of a disease?
I have seen this in my practice. I have represented people with fibromyalgia and reflex sympathetic dystrophy (RSD). RSD got such a bad rap, it had to change its name to Complex Regional Pain Disorder. This is like an illness going into the Witness Protection Program. Why would anyone force an illness to go underground, change its name or fight for recognition?
The answer, as usual, is to follow the money.
People with illnesses often want some form of compensation. They may want to prove their condition was caused or aggravated by a physical trauma in a lawsuit. Others may seek disability payments from Social Security or an insurance policy. However, many people just want to feel better.
In one of my RSD cases, I had an “expert” designated against me, and his sole role in the case was to testify that RSD did not exist. It was not an “entity.” He had a plethora of other possible explanations for why people might think they have RSD; he could not be sure about an of those. What he was absolutely certain of, however, was that RSD was not real. This guy was making a pretty good living going around the country debunking RSD. He was being paid to do so by insurance companies defending lawsuits like mine, where people lost the use of one or more extremities (arms or legs) because of trauma that disrupted their sympathetic nervous system. My client’s arm was a swollen cold, lifeless lump of flesh that caused terrible pain, was hypersensitive to heat or cold and was generally useless for anything other than making her life miserable. She was not upset at her mother. She was injured. This “expert,” with all of his degrees, was selling his opinion that, whatever she had, it was not RSD. He knew she had the burden of proof in her case, and unless she could explain what she had, she could not win. Just by saying, “I don’t know,” he argued against her.
Fortunately for her, no one believed this “expert,” not even the defendants in the case, who paid a generous settlement rather than have to present this man’s opinions in court.
Our courts have been busy with fibromyalgia. The United States Court of Appeals for the Fifth Circuit (one step below the Supreme Court of the United States) ruled in Vargas v. Lee, 317 F3d 498 (2003) that fibromyalgia is not caused by trauma. That may seem odd that a court would pass judgment on a medical issue, but there it was, in black and white. Actually, what the court said was that medical proof was so absent on the causal relationship between trauma and fibromyalgia, there could be no proof of cause and effect as a matter of law. When a court shuts you down like that, it is time to pack up your briefcase and go home.
The real news behind today’s story on fibromyalgia is that two forces with huge resources are apparently taking each other on. This is like watching Darth Vader and his goons taking on the Klingon Empire in a WWF-style grudge match. It not for the victims caught in the middle of this fight, I might actually enjoy the show.
So, how does this concern you? What can a single citizen do about all this mess? Truthfully, not a whole lot.
However, there are three things you can do, and they may make a difference.
First, do not vote for candidates who oppose the rights of consumers and victims of corporate malfeasance. Tort reform is a myth brought to you by the same folks who want you to believe people with fibromyalgia are really just crazy. These candidates, by the way, pass the laws that make it impossible for victims to obtain justice, and they appoint judges who make decisions such as the one in Vargas v. Lee.
Second, let your representatives in the state legislature and Congress know you are sick and tired of them putting the interests of big companies ahead of what is right and fair for consumers, patients and victims of corporate malfeasance. Perhaps if we continue to send this message to our politicians, they will get the message.
Third, when you get that jury duty notice, go and stand up for the little guy. You, by the way, are a little guy, and if it is ever your turn to stand in a courtroom and ask a group of jurors to find in your favor in a case against the insurance or drug industry, you will realize just how little of a guy you are.
As for the doctors, the best they can do is try to find something that works for their patients. If that is a medication, wonderful. If it is acupuncture, massage or psychotherapy, they should tell their patients they do not know how to heal them, but here are some suggestions. Don’t tell your patient she or he is crazy, or does not have a real illness. Confess your ignorance, tell them the little you know and then wish them well.
Steve Waldman – swaldman@gwlawyers.com