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Eli Lilly finds stigma is one of the worst parts of migraine as it aims to help break the taboo

It turns out that even more than the blinding pain, the nausea, the photosensitivity or crushing fatigue, the worst part of migraine is often the stigma attached to it. Those results are part of Eli Lilly’s fourth OVERCOME migraine data study.

The international population-based study is the largest of its kind, and the focus this year was to truly understand the impact of stigma on the quality of life of those already suffering with migraine. The company presented the (U.S. based) findings from the survey at the 2022 American Headache Society Annual Scientific Meeting in Denver June 9-12.

This was the first study where all people with migraine, not just academic headache centers aimed at the more severe cases, were asked about stigma.

According to Eric Pearlman, Lilly’s associate vice president, global and U.S. medical affairs, 31% of those with migraine said they “often” and “very often” have to deal with stigma—both “secondary gain” and “minimizing the burden.” But even those who have infrequent migraine, 25% reported experiencing stigma “often” and “very often.”

The study also found is that the down time, the “interictal burden”—a phrase borrowed from the epilepsy community—is often just as bad, if not worse for those with migraine due to the stress and fear surrounding another attack.

“They worry about when the next attack is coming. They find it difficult to plan because of the unpredictable nature of the migraine attacks and that leads to a significant amount of disability,” Pearlman said. In fact, what the study showed was that if the person experienced both types of stigma “often” and “very often”, even if they only had one migraine headache day a month, they reported more disability than someone with 15 migraine headache days a month who didn’t experience stigma.

Pearlman says Lilly plans to use the information internally as well as externally—taking these insights to see what is important to the patient and how to best address the issues when looking at treatment. There is the “Think Talk Treat” website for information on dealing with migraine. He stresses the importance of the study going directly to consumers via online surveys because the participants don’t have to be enrolled in a study or even seeing an HCP,  “We can actually learn about what’s happening to people with migraine who aren’t actively engaged in the health care system, and unfortunately, that’s a fairly large number.”

While many may not believe in the impact of migraine, not so pharma. The migraine sector is massive, with Lilly’s own Emgality and Reyvow, plus AbbVie’s Ubrelvy which features spokesperson Serena Williams, BioHaven’s Qulipta, Amgen’s Aimovig, Teva’s Ajovy and Lundbeck’s Vyepti.