Earlier this month, an Associated Press article renewed speculation about a debate many in the fibromyalgia community believed had been finally resolved. Is fibromyalgia a legitimate disease with recognizable symptoms, or is it a “murky ailment” drugmakers are promoting to increase sales of pharmaceuticals that offer pain relief? “Drugmakers’ Push Boosts Murky Ailment”
According the article’s author, reporter Matthew Perone, “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.” Perone cites critics of fibromyalgia diagnoses accusing drug companies of unduly influencing doctors and patients to make a profit.
“I think the purpose of most pharmaceutical company efforts is to do a little disease-mongering and to have people use their drugs,” said Dr. Frederick Wolfe, who was lead author of the guidelines defining fibromyalgia in 1990 but has since become one of its leading skeptics.
The National Fibromyalgia Association is fighting back. Its president, Lynne Matallana, says the article “merely regurgitates the same arguments that have been published in the past and offers the opinions of the same two men who have built careers out of drawing attention away from the hundreds of scientists who continue to make amazing scientific strides toward understanding the underlying cause(s) and pathophysiology of what fibromyalgia patients experience.” Says Matallana:
This article misinforms readers in a way that undermines and victimizes innocent people. By telling only selective parts of the story the author is perpetuating misperceptions and making it difficult, if not impossible, for readers to grasp what is truly important: that we need to stop debating and pointing fingers and start asking why it is perceived as acceptable to stigmatize a patient population just because medical research hasn’t yet provided us with all the information needed to understand that particular illness. Every illness seems to go through a stage of having to prove its legitimacy, but why should the patients be suspect during that phase of research?
Perone’s article points out that Matallana’s group, as well as other disease organizations accept grant money from pharmaceutical companies that they use to lobby Congress and fund educational programs. I suppose he expects the reader to assume everyone is colluding to manufacture a disease so they can all get rich.
Kantor and Kantor has represented literally scores of individuals with Fibromyalgia. It only takes knowing one person suffering from that disease to understand how impossible it would be to invent the painful symptoms suffered by thousands of others.
Who is the real culprit here? We believe that if you scratch the surface slightly, you’ll find that the insurance industry has the most to gain from research attempting to cast doubt on the legitimacy of fibromyalgia. Insurers could save millions relying on such research to deny disability claims from people in constant, debilitating pain and then refuse to pay for the drugs proven to provide relief.
If you doubt this, keep reading the AP article, which quoted Dr. Nortin Hadler, a professor at the University of North Carolina who believes fibromyalgia is not a medical disease but a psychological condition. Until the recently passed federal mental health parity legislation, in most states (California is an exception) insurers had tremendously more leeway to deny or limit benefits for mental health treatment than they did for treatment of physical diseases. And it’s still unclear how strong the federal legislation will turn out to be. In other words, if fibromyalgia is a mental health condition, insurers may be better able to limit their exposure to pay benefits for treatment or drugs. Similarly, since most group disability policies have limitations on the amount of time benefits will be paid for mental disorders, insurers will benefits in this arena as well.
According to Perone, Hadler “has occasionally advised health insurers about how to deal with fibromyalgia.”
Need we say more?