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Last year, four years after showing initial symptoms of multiple sclerosis, I walked out of one neurologist’s office and began searching for a different doctor. A series of events had gradually eroded my trust in the first doctor’s judgment, which I believe was colored by his financial relationships with drug companies.
I had started to see this neurologist not long after I experienced my first MS symptom: the sudden onset of visual distortion in my right eye. With the help of three MRI scans over the next year, he found an increasing number of lesions on my brain and eventually diagnosed multiple sclerosis.
The disease’s name refers to scars, or scleroses, that form in the brain and spinal cord over time.
On the day that he told me I had MS, my neurologist said I didn’t need to begin treatment immediately. But at my next appointment, he asked if I was interested in participating in a clinical drug trial he was conducting. I said I’d like to know more about it, and the study nurse showed me the trial’s consent form. The possible side effects were frightening, and I opted not to participate.
I have a background in medical ethics, so I was familiar with the potential conflicts of interest that exist for physicians participating in clinical pharmaceutical trials. I asked my neurologist if he was being compensated for running the trial, and he confirmed that he was. It was the kind of situation I would have advised students in my ethics courses to think deeply about.
But with my own health in question, my naturally skeptical faculties were silenced. I’d recently received a diagnosis of a serious chronic disease, and I wanted to be privy to any new studies or information that came my doctor’s way. At that moment, any worries about potential conflict of interest were trumped by a sense that I was lucky to have a neurologist on the front lines of MS research.
About six months later, during a routine appointment, my neurologist told me that new lesions had shown up on my most recent MRI. He thought it was time to go on disease-modifying treatment. (There is no cure for MS, so doctors usually describe medications as “modifying” the disease’s effects.)
Among the few options we discussed was Copaxone, the MS medication that’s supposed to have the fewest systemic side effects. This is a drug that MS patients self-inject either daily or every other day into the fatty layer just below the skin in the arms, thighs, hips or lower stomach. I agreed to start using it.
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1 comment:
I understand her concerns, and I know of at least one neurologist who seems to let drug company money affect his prescribing patterns, but in general I think there is enough objective data to know that, first of all, everyone with relapsing MS should be on a DMD and second, the ABC drugs are first-line and Tysabri is only brought in for aggressive cases that don't respond to the ABC's. Step number one is to find a doctor you can trust--usually someone affiliated with a medical school will have a boss or a committee monitoring for conflict of interest, and I know of at least one local health system that won't even let its doctors accept so much as a pen from a drug company. Then go to those dinners, have a nice meal and chat with other MS patients, but leave your drug decisions in the hands of your ethical healthcare provider.
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