Breakthrough in the Migraine Funding Crisis

Funding for migraine and headache disorders is so poorly misaligned to the scale of disability and economic cost that we can no longer ignore it.

The lack of migraine and headache funding has stalled the development of better treatments, support and solutions for decades.

The consequences have rippled across our hospitals, medical practices and even our quality of life and many of us are held 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 correctly, have never flowed

Migraine funds have dried up... or more correctly, have never flowed

How much funding does migraine receive?

NIH Funding per migraine patient

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

In this chart above, you can see the funding per patient. Funding figures have come directly from National Institutes of Health (NIH) Full Year 2015 actuals.[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 2015, its budget was $30.4 billion.[iii]

The NIH funded the equivalent to just $0.54 per patient for migraine. Compared to Multiple Sclerosis which received $235 per patient in 2015.

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

The 2016 budget is forecasted to be very similar.

Funding for all research on headache disorders was less than 0.08% of the 2015 NIH budget or $24 million. [iv]

Is funding really that 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 3. And the other person who shared it is 4.

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

Just this week I listened to a migraine geneticist and bioinformatics expert talking about the next frontier of migraine treatments, genetic research and opportunities that are truly ground breaking. It was incredible and exciting.

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 entirely cured by addressing the cause at the genetic level. As someone who plans to have a child within that timeframe, if there is anyway I can protect my child from migraine or reduce the impact that migraine may have on them I it would be invaluable.

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

Without the funding they cannot pursue this cutting edge research. Without the funding the research and teams are simply diverted to other areas of genetics which are receiving support.

Better 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]

This chart compares the funding from the NIH per $1,000 of total cost for each condition.

NIH migraine funding cost

Interestingly, you can see again how shortchanged Headache (which includes Migraine) is in this chart.

Epilepsy is funded over 10 times more than total headache based on this assessment and it’s still half the relative funding of multiple sclerosis.

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 9 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 10th year that the AHDA has been lobbying at Capitol Hill.

Good News: A Breakthrough

We have finally seen a breakthrough.

President Obama has 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 which is designed to address the opioid and heroin challenges in the US. Within this act is also the new pain burden appropriation guidelines to consider when allocating funding. 

Part of the problem is the perception that migraines are inconvenient but relatively benign disease which rarely lead to death. Consequently, they are not taken seriously and are not funded seriously.  

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

This bill directs the NIH to take this perspective into consideration when prioritising research.  

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

How you can join a winning team

1. 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. 

2. 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 this struggle.

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 it’s 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.

 3. Get involved with Headache on the Hill 

Find your local lawmakers and urge them to take action. You can find your Congressional Delegates via their legislative action center

 4. 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.

5. Donate something

Donate your time, effort or modest sum of money to some of the world leading not for profit organisations 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. 

Concluding thoughts

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.

Questions & thoughts welcome in the comments below


Note: You may have seen different quotes of funding quantities per patient and per number. It’s important to remember that funding changes each year as does the number of patients. The key figure calculated in this article is $0.54 cents funded per migraine patient in 2015. This is calculated by dividing the total funding for migraine ($20 million) by the total number of migraine patients (37 million).


Sources:

[i] Shapiro RE and Goadsby PJ. The long drought: the dearth of public funding for headache research. Cephalalgia. 2007;27(9):991-4.

[ii] Estimates of Funding for Various Research, Condition and Disease Categories (RCDC) Accessed Sep 15 2016. https://report.nih.gov/categorical_spending.aspx

[iii] US Department of Health and Services, HHS FY2015 Budget in Brief. Accessed Sep 15 2016. http://www.hhs.gov/about/budget/fy2015/budget-in-brief/nih/index.html

[iv] Estimates of Funding for Various Research, Condition and Disease Categories (RCDC) Accessed Sep 15 2016. https://report.nih.gov/categorical_spending.aspx

[v] Schwedt, Todd J., and Robert E. Shapiro. "Funding of research on headache disorders by the National Institutes of Health." Headache: The Journal of Head and Face Pain 49.2 (2009): 162-169.

[vi] Young, WB. Avocate for Migraine – With Feet. Accessed 15 Sep 2016.  https://migraine.com/expert/advocate-for-migraine-with-feet/

[vii] Steiner, Timothy J., et al. "Headache disorders are third cause of disability worldwide." The journal of headache and pain 16.1 (2015): 1-3.