Even so, MS patients taking Tysabri are still dying from PML. According to an FDA safety update issued in April, for every 1,000 patients treated with Tysabri for 24 to 36 months, 1.5 are likely to develop PML. Since 2006, 102 people worldwide taking Tysabri have developed PML.
To me, this was a red flag. Now I had serious questions about where my neurologist’s loyalties lay — with the drug companies or with me? I needed more information.
(KIM ROSEN FOR THE WASHINGTON POST)
Where I live, a state law mandates that payments any doctor receives from a drug company be reported to the Minnesota Board of Pharmacy, which enters it into a public database.
When I looked up my neurologist, what I found was damning. He had received more than $300,000 from drug companies between 2006 and 2008. (The 2009 data weren’t yet available.) Major contributors to this sum were Biogen, the manufacturer of Tysabri and the sponsor of the clinical trial my neurologist suggested to me early on, and Teva Pharmaceuticals, the manufacturer of Copaxone. In addition to many payments for acting as a speaker from these companies, my neurologist also had been compensated for “promotional/marketing consulting services.”
I knew that I had felt pressured by him to take medications. When I found that he had been paid six times my yearly salary to work for the manufacturers of those same drugs, my loss of faith was complete. I never returned to his clinic.
In fact, I have no idea whether my neurologist’s advice and judgment were affected by his relationships with the drug industry. But having MS is difficult enough. The last thing I needed was to worry about whether my neurologist was acting in my best interest.
Make it transparent
It’s understandably difficult for patients to trust physicians who have drug company relationships. Income that doctors derive from drug companies for “marketing consulting services” and “speaker fees” creates an unconscious social expectation of reciprocity, which, just as with any gift, has the potential to corrupt and distort any person’s advice.
Clinical trials serve an important goal of exploring new treatment options. These trials can’t take place without subjects, so I understand why there is a need to recruit patients. In an ideal world, however, clinical drug trials would be funded and administered by neutral, independent parties, eliminating ethical conflicts for physicians.
As a patient, I find it inexcusable that doctors aren’t routinely required to disclose their conflicts of interest to their patients.
I also believe that it should be made transparent to every patient — by his or her doctor — why any third party such as Shared Solutions is involved in his or her treatment. That should be especially true when the third party has a financial interest in the arrangement.
After months of searching for a new neurologist, one who didn’t accept drug industry money and whose services would be covered by my insurance plan, I finally found one I like. I trust his interpretation of my recent MRIs, and I took his advice when he said I should go back on an approved MS treatment. I’ve been able to fully commit to getting the care I need precisely because I have no reason to question my doctor’s loyalties.
During my first appointment with him, I asked him directly if he had any industry relationships; he told me he didn’t. At the end of our conversation, I asked if any other patients inquired about possible conflicts of interest. He shook his head no.
I was the only one.
Wolston is a doctoral candidate in philosophy at the University of Minnesota. This article is excerpted from the December issue of Health Affairs magazine and can be read in full at www.healthaffairs.org.
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