But that might change since the pharmaceutical industry itself is beginning to examine this disconnect, according to STAT. Research funded by the Pharmaceutical Research and Manufacturers of America (PhRMA) 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 medicine that thwarts MS progression, and prevents or at least lessens the intensity of relapses.
In contrast, patients want relief from out-of-pocket costs and are concerned about dangerous side effects, especially the brain disease PML.
Roger Longman is CEO of Real Endpoints, the research company that conducted the analysis. He tells STAT that, “The key point is that coverage decisions and physician prescribing do not take into account the most important patient preferences. And drugmakers then follow the lead of the payers and physicians in designing their clinical trials. So at the end of the day, 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 tells STAT: “Unfortunately, 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 is available data.”