Breakthrough in the Migraine Funding Crisis

[UPDATED: August 3, 2018] Funding for migraine and headache disorders is so poorly misaligned to the scale of disability and economic cost that we as patients can no longer ignore it. Migraine funding is a barren desert which needs to support around 1 billion people worldwide.

The lack of migraine and headache funding stalls the development of better treatments, support, and solutions.

The consequences have already rippled across our hospitals, medical practices and even our quality of life as many of us remain held at ransom to frequent migraine attacks.

We’ve also fallen behind other diseases and conditions that now enjoy more successful treatments, interventions, and effective management.

Migraine funds have dried up… or more accurately, never flowed.

How much funding does migraine receive?

Migraine is the least publicly funded of all neurological illnesses relative to its economic impact. [i]

In the chart above, you can see the funding per patient. Funding figures have come directly from National Institutes of Health (NIH) Full Year 2017 report.[ii]

The NIH is the largest source of public funding in the world. They are the medical research agency of the US Department of Health and Human Services. In 2017, its budget was $33.1 billion.[iii]

The NIH funded the equivalent to just $0.51 per patient for migraine. Compared to Multiple Sclerosis which received $252.50 per patient in 2017.

This chart shows clearly how poorly funded migraine compares to other conditions like epilepsy, schizophrenia and Parkinson’s.

The 2018 budget is forecast to be very similar.

Funding for all research on headache disorders was less than 0.14% of the 2017 NIH budget or $45 million. [iv]

Why is funding important?

You might read this article and think, “yes it would be nice to have more funding. But it’s not essential. Things need to change, but it’s all too big for me.”

Actually you and I are two people. And the other person reading this is three. And the other person who shared it is four.

Pretty soon one person becomes hundreds, then thousands and together we become a strong voice that can no longer be ignored.

Just recently I spoke with a migraine geneticist and bioinformatics expert talking about the next frontier of migraine treatments, genetic research, and opportunities that are truly groundbreaking.

They were talking of these findings being in the hands of patients within years not decades.

Imagine being able to see significant populations within migraine cured by addressing the cause at the genetic level. As someone who plans to have a child within that timeframe, if there is any way I can protect my child from migraine or reduce the impact that migraine may have on them that would be invaluable.

The biggest barrier of this research is no longer the science, it’s the funding.

Without funding they cannot pursue this cutting-edge research. Without funding the research and staff are simply diverted to other areas of genetics which are better funded.

More effective treatments and potential cures will not be a reality without funding.

What does migraine cost?

The cost of an illness has both direct and indirect costs.

Direct costs are items like treatment costs, medical visits, medication.

Indirect costs are often the hidden costs of the illness. It’s things like the lost productivity at work due to your migraine. It’s the sick day you’ve had to take each month due to your migraine attacks.

The total cost of headache disorders within the US exceeds $31 billion.[v]

How are different diseases compared to each other?

The World Health Organisation uses an internationally recognized measure called Disability-Adjusted Life Year (DALY).

According to the WHO, it is the sum of years of potential life lost due to premature death and the years of productive life lost due to disability for those living with a health condition. These two metrics are aggregated into a DALY score.

One DALY can be considered as one lost year of “healthy” life. [viii] It is an objective method to measure the burden of disease across different conditions.

Dr. Robert Shapiro, a leading migraine advocate and neurologist shares on Twitter the discrepancy of funding relative to disease burden.

Even though this data is from 2015, it is still relevant as the figures have not improved for migraine since then.

You can see again how shortchanged headache and migraine is on this chart. If migraine was funded proportionately it should be receiving at least $200 million per year or 10 times more than what it receives today just to be in line with the average of disease funding.

Introducing a small group of heroes

Since 2007, a group of migraine advocates travel at their own expense to Capitol Hill to advocate on our behalf.

The group is called the Alliance of Headache Disorders Advocacy (AHDA) and it’s made up of patients, caregivers, advocates, and doctors. The AHDA ask for more funding, research, and support.

As mentioned above, without funding, companies, universities, institutions have trouble supporting clinical research, new treatments aren’t investigated, breakthroughs aren’t made and any hope of a cure becomes out of reach.

It’s a thankless task they perform for us, to an often skeptical and defensive reception.

Increasing funds for migraine is far more difficult than you might expect at first glance. Printing a copy of this article with the facts and sources isn’t enough.

I spoke with Eileen Jones, RN PHN, one of the early members of AHDA and this is what she heard from one of the Congressional representatives during her visits to Capitol Hill:

“Funding is flat, and we’re not going to take money from someone else and give it to your group.”

If there is no budgetary increase, increasing funds for migraine means cutting from another condition like cancer. And you can imagine the response that would incur from these other groups.

Eileen said, “Well, we’re not asking you to take money from any other group, but at least we’d like to get in line to be noticed so that eventually we will get more funding.” …The next question we asked was, “How are we going to do this?”

The Congressional representative said, “Keep coming back every year. It could take a long time, but eventually you will make your goal.”

Eileen asked, “Is there anything that we can do to speed this up?” She said, “What you people need to do is to go back to your state, to your cities and towns, and build public support around your cause for migraine research money. Get people to get behind your effort like they got behind breast cancer, and like they got behind the AIDS crisis.” Everybody knows that those two things are very well funded.

Eileen remembers saying, “I’m a chronic daily migraine patient, how would I do that? How would I build public support, when I feel like I’m just taking care of myself?” She said, “That is for you to figure out. I can’t tell you that. You’re just going to go home and figure it out.”

The process is highly political, slow moving and very difficult. But it is essential work.

In the 10 years AHDA has been advocating on our behalf, the funds for migraine and headache has tripled from $8 million to $24 million.

Over the same period, Eileen raised around $100,000 for migraine research under her Miles for Migraine races across the country.

An amazing achievement. But there is still more work to do.

We are coming up to the 11th year that the AHDA has been lobbying at Capitol Hill.

Finally, a breakthrough

After years of work, we’ve finally made a breakthrough.

President Obama signed a bill into law which includes a provision that directs the NIH “to consider the relative burden of pain in prioritizing the overall NIH research portfolio” (Dr. Young, Dr. Shapiro).

The bill is called the Comprehensive Addiction and Recovery Act (CARA) which is designed to address the opioid and heroin challenges in the US. The opioid crisis has since continued to worsen and in 2017 the department of Health and Human Services declared it a public health emergency.

Within this act are new pain burden appropriation guidelines to consider when allocating funding. The act will help bring greater equality for migraine but it’s also relevant for anyone with chronic pain.

Part of the problem is the perception that migraine or chronic pain conditions are inconvenient but relatively benign diseases which rarely lead to death. Consequently, they are not taken seriously and are not funded seriously.

This perspective ignores the huge disability and cost. Headache disorders are the third largest cause of disability worldwide. [vii]

This is the really important part. The CARA act directs the NIH to now take this perspective into consideration when prioritizing research.

This has been a deliberate and specific effort from the past and present team at AHDA who should be acknowledged for their hard work, perseverance, and patience.

CARA was signed into law in July 2016 and a bill has been introduced to fund the provisions called The Opioids and STOP Pain Initiatives Act (H.R.4722 / S.2260). But there is still a crucial step to finish.

This bill still needs to pass.

How you can help make history

1. How to send a quick email to your representative

Sending a short pre-written email to your representative is the quickest and easiest way you can make a real difference for migraine patients today and in the future.

Click on the link below which takes you to the nonprofit Alliance for Headache Disorders Advocacy where they have created a short form to fill out – it will automatically send a pre-written note to your representative that contains all the information they need.

2. Simply participate

Dr. William B Young stated that “History shows that almost all recent successful disease re-branding efforts have come through patient participatory movements.  For example, AIDS and cancer each brought together their communities and successfully confronted the country’s biases, which led to more research and more acceptance.  Just going to a walk/run for migraine is a revolutionary idea to many in the community who don’t get it.”[vi]

Miles for Migraine and Runnin 4 Research host walks/runs all over the country and events where you can get involved. Over the next four years Miles for Migraine plans to expand the number of events to 25 walks/runs.

3. Involve others

One more really amazing thing you can do is get your work involved. Ask friends and family as well who don’t have migraine to participate to support you and battle against the structural stigma against those with migraine.

Ask your company to sponsor the races or match staff donations, ask your friends and colleagues to personally contribute and welcome any opportunity to tell people how migraine and headache receives the least support or funding relative to its huge burden.

Any effort and money may therefore have more impact and might do more good than participating in other races for diseases that are much better funded.

4. Get involved with Headache on the Hill

You can also find your Congressional Delegates via their legislative action center. Or use their template and short form to send a note to your representative within 2 minutes.

Note: you need to be a US resident or citizen.

5. Share this message

Spread and share this page and messages like this to inform an increasingly large and vocal group of people with migraine who believe we deserve less stigma and more funding.

6. Donate something

Donate your time, effort or a modest sum of money to some of the world leading not for profit organizations that fund research, advocacy, and support.

The Migraine Research Foundation has raised over $3 million and has funded 53 different migraine studies. 100% of donations go to fund research. The American Migraine Foundation funds research, supports patients and actively advocates on our behalf as do the National Headache Foundation

The Migraine Trust in the UK and Headache Australia also provide incredible resources and fund research.

This is list is not extensive. There are many others.

Many small actions make a BIG difference

The current funding levels for migraine and headache are appalling.

When you see the numbers, the level of neglect for migraine and headache is shameful. Whether it’s from misinformation, prejudice or discrimination is irrelevant and no longer an excuse.

Congress needs to step up… but we also need to step up, for ourselves and future generations to come. We need to make our dissatisfaction heard. To remove the stigma, to secure more funding and for a quality of life that we deserve.

How do you feel about the funding for migraine? Let me know in the comments below.