Clipboard: Patient tells of losing trust in her doctor

By Chelsea Conaboy, Globe Staff

Maran Wolston, a doctoral candidate at the University of Minnesota who has taught chemistry and philosophy, is well-qualified to talk medical ethics. She has taught courses on the subject, as well as on the philosophy of illness. That’s part of what makes her piece about a doctor’s conflict of interest, published in the December Health Affairs, so compelling.

But perhaps even more than that is the fact that the narrative she unravels could be the story of countless other patients, including many who are less savvy than she is.

Wolston writes about interactions she had with her neurologist soon after being diagnosed with multiple sclerosis. He offered her entry into a clinical trial, which she declined after learning about the possible side effects of the drug being tested.

Being as familiar as she is with the medical system, she asked her doctor if he was paid by the drugmaker and he confirmed that he was.

“At that moment, any worries about my physician’s potential conflict of interest were trumped by a sense that I was lucky to have a neurologist on the front lines of MS research,” Wolston writes. “But, in retrospect, this was the first step in what I later saw as a betrayal of trust.”

Wolston began looking more deeply at her doctor’s connections to drugmakers when he recommended that she start treatment. The first medication caused painful welts on her body and she stopped taking it. The second, she learned before starting it, carried the risk of debilitating side effects. Her doctor’s advocacy of the drug was “a red flag,” she said.

Then she looked in a state database of payments by pharmaceutical companies and found that her doctor had been paid more than $300,000 between 2006 and 2008, with the makers of the two drugs he had recommended to her listed as major contributors.

The story, which has gotten a lot of attention on Twitter, points to the importance of making such information available to the public. The federal Affordable Care Act calls for a national database. Some states have started their own, with Massachusetts leading the way on that effort. And work by the nonprofit news organization ProPublica, in partnership with newspapers like the Globe, has highlighted payments by drug companies.

There’s a sense of hope in Wolston’s story that putting information into patients’ hands will improve the system, but there’s a long way to go. She writes:

As a patient experiencing a neurological disease that has no known cause and no known cure, I expected my neurologist to be direct and honest with me. I expected honesty in interpreting my MRIs; in giving me a prognosis; in explaining his rationale behind treatment recommendations and in providing verifiable, scientific information about them; in educating me about MS; and in telling me about any conflicts of interest with drug companies. Actually, I expected that my neurologist would have no financial conflicts of interest whatsoever.

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 him, and he’s remained my doctor. 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 told him that having my doctor not receive industry payments is one of my criteria for choosing a neurologist. 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 many patients inquire about possible conflicts of interest. He shook his head “no.” I was the only one.