Raising the bar for migraine care

Why is there a need to raise expectations for migraine care?

Migraine is still widely misunderstood and stigmatized.³ It is a neurological disease that can severely affect a person’s ability to fully engage in their personal life, career and relationships.^{4, 5}

Meaningful advances in migraine research and treatment have been made, including the development of anti-CGRP therapies. But substantial unmet need remains, particularly for people who are highly impacted by the disease.

For too long, the approach has often involved trying multiple treatments without a clear algorithm or way to predict individual treatment response. We need to better understand the severity of migraine and its broader impact on each person rather than relying solely on the number of headache or migraine days they experience.

What is missing from the way migraine is treated today?

I believe the biggest challenge is a lack of urgency. We have more knowledge of migraine and available treatment options than ever, but data tells us that disease management hasn't changed at the same pace: as few as 3 out of 100 people living with migraine who are eligible for preventive treatment will receive it.⁶

That matters because migraine is increasingly being recognized for what it is: a serious neurological disease. As our understanding of the disease evolves, the approach to treatment should evolve with it.

What does it mean to look beyond simply reducing headache days?

Headache or migraine frequency is incredibly important, but it often doesn't tell the whole story.

A recent online survey conducted by Migraine Meanderings with support from Lundbeck reinforces just how broad that burden can be. Among 580 respondents, 88% reported experiencing symptoms such as fatigue and brain fog between migraine attacks — a reminder that the impact of migraine disease can extend well beyond attack days.⁷

Ultimately, treatment should be centered on the individual and what an optimal outcome looks like for that person. That requires clinicians and researchers to think more broadly about quality of life and disease burden rather than defining success solely through a reduction in symptom days.

What are we hearing from people living with migraine about disease progression?

The same survey conducted by Migraine Meanderings highlights why greater awareness and urgency around disease progression are needed. Nearly half of respondents (46%) said the number of migraine days they experienced each month had increased either gradually or rapidly over the previous several years, and 37% reported increasing attack severity.⁷

Perhaps even more telling is the gap in awareness. Only 35% of respondents said they had ever heard about migraine disease progression from a healthcare provider, and only about half said they knew how to slow or reverse progression.⁷

Those findings point to an important opportunity. People living with migraine need to be better equipped to understand how their disease may change over time and to have informed conversations with their healthcare providers about their treatment and outcome goals. If we want to raise expectations for migraine care, those conversations need to happen earlier and with greater urgency.

How are standards for migraine prevention beginning to change?

There is growing recognition across the migraine community that we should be setting more ambitious treatment goals.

The International Headache Society has called for raising standards in migraine prevention, including shifting the focus beyond individual attacks toward the course and progression of the disease. It has also emphasized earlier preventive treatment strategies intended to improve treatment effectiveness, reduce suffering and ultimately help prevent disease progression.^8,9

That represents an important change in mindset. Instead of asking only whether a treatment may have resulted in an acceptable improvement, the community should increasingly be asking what the best attainable outcome may be for the individual.

Why is earlier preventive treatment an important part of that conversation?

New standards of care are encouraging the migraine community to think about prevention earlier, including while migraine frequency may still be relatively low. This conversation continues to evolve, as real-world evidence and ongoing research offer insight.

The broader principle is that clinicians should not necessarily wait for someone’s disease burden to become more significant before considering a preventive approach. Earlier intervention has the potential to improve quality of life and may help change the trajectory of the disease.

For the migraine community, that means reconsidering some of the longstanding assumptions about when prevention should begin and potential outcomes to strive for.

What needs to change to improve migraine care?

No single stakeholder or group can do it alone.

People living with migraine, healthcare providers, advocacy organizations and the pharmaceutical industry all have a role to play in challenging the status quo and continuing to raise expectations for care.

We are at an important point in the evolution of migraine treatment. The opportunity is to move from accepting incremental improvement as the endpoint toward pursuing more optimal and individualized outcomes.

People living with migraine deserve better. Raising the bar means creating greater urgency around what is possible by continuing to collaborate with the community and to push toward better outcomes.

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