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The most severe migraine patients have poor access to care. The system is failing them!

The National Headache Foundation has begun to conduct surveys with thousands of our patient members on important topics such as affordability of care, meaningful migraine relief, and satisfaction with medications and treatment. The results are starting to come in and we are beginning to analyze some of the data. So, we decided to share what we are learning through a series of blogs that will be posted on our website and social media platforms.

In this post we want to share some interesting results about the correlation between headache frequency and access to care, higher engagement with healthcare providers, and dissatisfaction with care. The analysis of the survey results matched the number of headache days per month to several outcomes. We found that the population with the most headache days (more than 25 days per month) has some unique issues that are not seen in other groups.

Patients with more than 25 headache days per month are eight times more likely to consult with more than four healthcare providers. Some patients currently consult with as many as eight different providers for their headache care! They visit primary care physicians, neurologists, pain specialists, dentists, physical therapists, acupuncturists, chiropractors, hypnotists, and more. This is a group that is truly, actively seeking better headache management. Some patients have reached the point of desperation. But despite their persistence, they still have headache almost every day of their lives!

Even more interesting, these patients are six times more likely to have been denied access to a medication or an intervention recommended by their doctors. And they are more than twice as likely to be “very dissatisfied” with their healthcare. This segment of the migraine population clearly struggles with very poor outcomes, despite being treated by numerous providers. And they are experiencing unacceptable rates of poor access to care. The system is preventing them from receiving adequate care regardless of how many healthcare providers they are seeing. They appear to be routinely denied therapies that might offer them some relief.

The irony and pity of these findings are that this most disabled and severely impacted migraine population is the group for whom higher end therapies should be implemented. Indeed, the prior approval processes used by insurance benefits managers should be screening out the people with lower headache frequency and severity who do not need the more aggressive (more expensive) treatments. And it should not be denying services to those with higher levels of need. Our concern, based on the survey findings, is that the approval process may not be obtaining the results it is designed to achieve. Perhaps the time has come to re-examine how the prior approval process works for this group. Clearly there is a large component of the National Headache Foundation’s patient constituency that requires us to question what is going on and to call on insurance companies to develop a better process. Too much suffering is occurring within the migraine community for this pattern to continue.

As always, we welcome and appreciate your thoughts and comments in general and today, specifically on our blog? Do you agree? Disagree? Please share your thoughts and experiences by commenting or by visiting The more we elevate the discussion on topics like this, the better people will understand the underserved need. Stay tuned and watch for the next blog which will cover more results from the NHF Patient Surveys!

Timothy R Smith, MD RPh First Vice President National Headache Foundation

First Vice President, National Headache Foundation
Dr. Timothy R. Smith, MD, RPh

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