News & Commentary

MS Patients Want Goals To Be Known


Pharmaceutical companies seem to show little interest in what a patient with multiple sclerosis wants from a medication. But that might change because the pharmaceutical industry itself is beginning to examine this disconnect, according to STAT. Research funded by the Pharmaceutical Research and Manufacturers of America involved a review of over 300 clinical studies and surveys of 30 payers, doctors, and patients each.

Pharmaceutical manufacturers take their cues from insurers and physicians who want medications that thwart the progression of MS and prevent or at least lessen the intensity of relapses.

But patients are also concerned about out-of-pocket costs and dangerous but rare side effects, especially progressive multifocal leukoencephalopathy.

Roger Longman is CEO of Real Endpoints, the research company that conducted the analysis. He told STAT that the main takeaway is that coverage decisions and physician prescribing do not reflect patient preferences. Drugmakers have tended to follow the lead of the payers and physicians in designing clinical trials. “So their notion of value is much different than what the patient values.”

Conclusion? It’s important to know what the patient wants, but that information isn’t readily available, says Kimberly Westrich, vice president of health services research at the industry-backed National Pharmaceutical Council, which studies medication access.

She told STAT that “you can’t capture this information in a traditional competitive effectiveness analysis. But if the pharmaceutical industry knows there’s an appetite for this kind of information, which can be shared with payers and treatment guidelines developers, they may choose to start building these points into their trials so there are available data.”