Maran Wolston, U of M student, on 'betrayal of trust' by neurologist paid by drug companies
For Maran Wolston, learning she had developed Multiple Sclerosis was frightening enough. But the treatment was a horror in itself.
Wolston, a Ph.D candidate at the University of Minnesota, believes she received years of questionable -- and at times, potentially dangerous -- advice from a doctor whose judgment was clouded because he was paid hundreds of thousands of dollars from drug companies.
Her story, which was recently published in Health Affairs health care and policy journal, offers a window into several ethical issues facing the medical community, including whether doctors should disclose financial relationships with drug companies to patients.
"I come from a perspective that doctors are the buffer between the patient and the drug company," says Wolston. "I think the patients should be protected from drug companies."
Wolston began to notice early signs of MS in 2006. At first, the symptoms seemed more like a minor annoyance than a long-term health problem. Most of the time she was fine, but whenever she finished biking to school or playing a game of racket ball, she experienced vision problems
"It was almost like there was a floodlight shining in my right eye," she says.
Several specialists later, Wolston discovered the problem stemmed from lesions on her brain.
Wolston says the "betrayal of trust" from her neurologist -- who is unnamed in the article -- began on the first appointment after she was diagnosed. He previously told her there was no hurry to begin treatment, but he now said she qualified for an experimental drug study he was conducting.
This gave Wolston reason to pause. She had been pre-med in her undergrad, and her dissertation focused in part on bioethics, so she was well aware of the ethical questions surrounding these types of studies. Wolston asked the neurologist if he was being compensated for running the drug trial, and he confirmed that he was. She decided the study was too risky, and opted not to participate.
At an appointment six months later, Wolston discovered she had developed more lesions, which meant it was time to start medication. She agreed to start using Copaxone (glatiramer acetate), a self-injecting drug that can help reduce the symptoms of MS.
The treatment, says Wolston, was not pleasant. From the article:
Patients are advised to cycle through the various possible injection sites so as to avoid inserting the needle into the same area repeatedly. But no matter where I injected the drug each day, the injection site swelled up into a huge welt and felt like a gigantic bee sting.
Around this time, Wolston began getting regular calls from nurses working for a company called "Shared Solutions" to talk about the treatment. She also received packages in the mail from them containing a wealth of swag: traveling cases for syringes, refrigerator magnets, invitations to MS dinners.
Wolston couldn't quite figure out Shared Solutions. When her doctor had asked permission to give her patient information to the company, he didn't offer any explanation to its nature, so she assumed it had something to do with her health insurance. But for all the pain and discomfort she described, no one at Shared Solutions ever suggested she stop taking and it and try another drug.
After some research, she discovered Shared Solutions was actually a subsidiary of Teva Pharmaceuticals, the manufacturer of Copaxone.
Carl Elliot, a bioethics professor at the University of Minnesota, says this is the first time he's heard of a drug company subsidiary playing this type of role, but he finds it unsettling.
"The issue is, you have a really expensive drug that you need for people to take for a very long time," says Elliot. "It's very unpleasant to take. So then for the drug company, it becomes very important to make sure that the patients stay on the drug. And that's what Shared Solutions seems to be about."
Wolston decided to stop taking Copaxone (A representative from Teva Pharmaceuticals didn't return a request to respond).
At her next appointment, Wolston's neurologist informed her she was developing more lesions, and it was time to try another drug.
The doctor recommended Tysabri (natalizumab). Though he admitted it came with some risk, the neurologist told Wolston he had success with the drug in the past. Before committing to it, Wolston wanted to learn more about the drug. She was terrified to find out just how risky the drug was. Among the potential side effects was a rare but usually fatal disease called Progressive Multifocal Leukoencephalopathy.
Suspicious of her neurologist's motives, Wolston decided to look him up on the Minnesota Board of Pharmacy's website. From the article:
When I looked up my neurologist's name there, what I found was damning. He'd received more than $300,000 from drug companies between 2006 and 2008 (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 from these companies for acting as a speaker, my neurologist also had been compensated for "promotional/marketing consulting services."
"A number of payments he received were for speaker fees," says Wolston. "I just thought 'Who is he speaking to and what is he saying?'...I thought, 'Is he able to separate this in his clinic?'"
Wolston quickly dumped the neurologist and began seeing another -- one who she confirmed does not take money from drug companies.
But Wolston acknowledges her situation wasn't unique. It's become increasingly common for doctors to accept money from drug companies, a practice many argue can help further treatment research. But doctors rarely volunteer this information to patients, and most patients wouldn't know to ask.
"You can see the difficulty with that as a kind of solution, which is extremely uncomfortable for both sides to bring that up," says Elliot. "Patients don't want to ask it because it's awkward, it feels rude, it kind of puts you on a defensive footing."
Elliot believes the solution is simple: "Not to take the money."
Based on her experience, Wolston wishes her neurologist would have been up front with her. She admits she has no way of knowing if the drug company money skewed her doctor's judgement, but the possibility was real, and dealing with MS was enough to worry about.
"Even though nothing he did was illegal," she says, "it still impacted my ability to feel like I was getting sound medical advice and medical care."
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