The Coalition for Headache and Migraine Patients Releases Headache Disease Patient Access Survey Results

Deepening Understanding of the Difficulties Faced by People with Migraine

More than half of the respondents with migraine reported trying or using ten or more pharmacological treatments to manage this complicated and challenging disease

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Coalition for Headache and Migraine Patients

Sep 29, 2021, 14:24 ET

SANTA MONICA, Calif., Sept. 29, 2021 /PRNewswire/ -- The Coalition for Headache and Migraine Patients (CHAMP) conducted the Headache Disease Patient Access Survey (survey) to better understand the migraine and headache patient experience. The survey revealed, among other things, that despite the widespread prevalence of migraine, people with this disease encounter many difficulties in their patient experience -- from cost barriers, dissatisfaction with treatment plans, and a lag in seeking care and receiving a diagnosis.

"CHAMP conducted this survey to better understand the migraine patient journey and identify gaps along the way that are keeping people from being able to effectively manage their care," explained Kevin Lenaburg, Executive Director of CHAMP. "People with migraine have historically struggled to find treatments that work, but luckily this is a new era of care and more treatments for migraine have come out in the past three years than in the twenty years before."

Specifically the survey found that 52% of people with migraine waited one year or more from symptom onset to when they first sought help from a healthcare professional. Further, 55% tried 10 or more pharmacological treatments currently or in the past.

Non-pharmacological therapies were also examined. Among those with migraine, nearly all respondents (96%) had tried complementary or alternative therapies, such as over-the-counter supplements, yoga, dietary changes, or exercise. And a significant number (69%) had turned to biobehavioral treatments. Fewer than 20% of respondents had tried neuromodulator or neurostimulator devices for migraine as an approach to care.

Gaps in HCP satisfaction were found by the type of provider primarily treating respondents' headache, with 82% of those currently treated by a HAS reporting they were "satisfied" or better with their HCP, while 64% of those seeing a primary care doctor and only 56% seeing a neurologist (non-HAS) were similarly satisfied. The survey also found, compared to those seeing a general neurologist, those currently seeing a headache specialist for their headache reported spending more time with their HCP during regular appointments.

Insurance barriers to treatment and costs are also notable in the survey findings. Specifically, 87% had experienced prior authorizations, 82% medication dose limits, 77% step-therapy, and 68% had been denied coverage. On monthly headache-related out-of-pocket health care costs, 63% of respondents reported spending $100 or more, with 16% spending $500 or more.

"The majority of respondents to our survey reported a high frequency of headache days. While this is not representative of the larger population, we believe it is a unique sample of people to explore the migraine experience, particularly one that may be highly burdened by their disease." noted Beth Morton, Principal Investigator.

About the CHAMP Headache Disease Patient Access Survey

The survey results illuminate important aspects of the headache disease patient journey in connection with headache symptoms and severity, patient-healthcare professional interactions, treatment and insurance access, and stigma.

Migraine impacts a staggering 40 million people in the United States, and the disease is the second leading cause of disability worldwide.

To date, three briefs have been developed from the patient survey. The first brief introduces the methods and sample of the survey, the second brief dives into the unmet treatment needs of patients, and the third brief reveals important information about the healthcare experiences of people with migraine.

About CHAMP

The Coalition for Headache and Migraine Patients (CHAMP) is a non-profit that provides support to people with headache, migraine, and cluster diseases who are often stigmatized and under-served. To learn more please visit: https://headachemigraine.org/

SOURCE Coalition for Headache and Migraine Patients