[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.
- 1 How much funding does migraine receive?
- 2 Why is funding important?
- 3 What does migraine cost?
- 4 How are different diseases compared to each other?
- 5 Introducing a small group of heroes
- 6 Finally, a breakthrough
- 7 How you can help make history
- 8 Many small actions make a BIG difference
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.
You wonder…— Robert Shapiro (@headachedoc) December 10, 2017
"Well, why aren’t there objective tests for #migraine?
Why don’t we have migraine drugs that work?
Surely, @NIH must prioritize this kind of research!"
This is structural stigma. pic.twitter.com/LbQH6RfUYD
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.
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.
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 $0.51 cents funded per migraine patient in 2017. This is calculated by dividing the total funding for migraine ($19 million) by the total number of migraine patients (37 million).
[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 Feb 13 2018. https://report.nih.gov/categorical_spending.aspx
[iii] US Department of Health and Services, HHS FY2017 Budget in Brief. Accessed Feb 13 2018. https://www.hhs.gov/about/budget/fy2017/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.
[viii] World Health Organisation. ‘Metrics:Disability-Adjusted Life Year (DALY)’ Accessed Feb 13, 2018. http://www.who.int/healthinfo/global_burden_disease/metrics_daly/en/
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Many thanks for raising my awareness about this. Would love to get involved with races for migraine. Am assuming there is a website Miles for Migraine, and will start there. Any other sites which are involved with raising public awareness?
Yes Kristen! There are lots! Miles for Migraine is a great place to start at http://milesformigraine.org/ I’ve also linked to this in the article as well as to Runnin 4 Research. Then there are many migraine foundations and charities across the country and internationally. I’ve just recently added a few under ‘Donate’.
Thanks for the hard work from ADHA. Please keep us informed of local events / walks. or a link to such events. Perhaps we can entice some celebrities who suffer or have loved ones who suffer? An ice bucket challenge would have been great. (And feel good on my head too) We need some kind of viral grassroots campaign.
Such a great idea Erica! More celebs are needed… I think that is a great strategy to entice a celebrity who themselves may not suffer by have someone in the immediate family. Brilliant.
Thanks for shining a light on this problem !
So many people suffering but so little funding towards relief.
All of us with migraine or family members with migraine need to talk about it, and get involved in raising awareness, demanding funding and working to reduce the stigma of migraine.
Well put! Thank you Janet.
Thank you Carl for that information, I am astounded at the lack of funding available for such a well known disorder.
Is there anything like the Miles for Migraine here in Australia?
How does Headache Australia raise their funding?
Not that I’m aware of. The closest thing I’m aware of are Zombie walks which occur in a few Australian cities which donate (I’m not sure what percentage) funding they collect to the Brain Foundation which is connected to Headache Australia if you Google ‘zombie walk’ it should come up. Headache Australia raises funds via donations.
This article is well written and illustrates the need for events like Miles for Migraine and Runnin 4 Research. Since we are still growing we added a virtual event for people to access. The goal is to make some big noise and spread awareness so please join us to silence the stigma – let’s talk migraine! Shirley Kessel, President, Miles for Migraine
I love that idea of a virtual event participation. Anyone, anywhere who runs their own race or walk and raises $100 or more can will get a t-shirt and goody bag as an official fund raiser for Miles for Migraine. Fantastic! Thank you for the encouragement Shirley. I hope this article recruits more people to the cause.
I was disabled two and a half years ago by the migraine attacks I have had over the years ago. This article is very encouraging, but I noticed something very crucial in the calculation for funding dollars per person. The neurologists I have been seen by have never "officially" given a diagnosis of ‘migraine’. Therefore I am not included in the ‘number of migraine patients’. Because of neurologists unknowledgeable in certain areas, i.e. migraines, the number is even less for those who need the funding.
Certain parts of the cost could be significantly understated. For example, how can we put a dollar figure against someone’s quality of life which can be eroded by disabling chronic disease?… and how does that figure change as things improve or decline? The closest measure I’ve seen being used is economic productivity which is a crude measure at best. No easy answers unfortunately.
How do they ignore the mounting evidence that certain migraines increase the risk for stroke? Also, what about the damage caused to one’s brain after years of migraines? I have Parkinsonism and I’m certain this is from years and years of hemiplegic migraines and migraines with aura. I know so many people with Parkinson’s who have a long history of migraines. This is a serious health crisis that needs to be further evaluators.
I agree Lynn. Migraine is serious and needs desperate and urgent attention for change to occur. Hopefullly the impact we can have collectively will make a difference now and improve things for others in the generations to come.
Thankyou for the hard work ADHD is putting in, it is so appreciated. I would also like to get involved somehow with Miles for Migraines and would like to know if there are other web-sites trying to raise awareness.
Thanks to being on Naproxen for a rheumatism flare up I seem free at the moment of migraines. Nevertheless I carry my Triptans around with me. Thank goodness for rheumatism (!!) ( thats a double edged sword if ever there was one ) or I would be on migraine suppressants. I remember how I was totally disabled on the day/s of migraine because of the nausea and vommitting. Also very fragile for days and weeks around the day of migraine.
Zero support from anyone. Considered a shirker in fact. I would be sanctioned today because of inability to work.
I was bereaved as a child too and left to sort that out alone as well.
I could see little to hope about as a child growing up with these problems.
You vindicate me in my thoughts that migraine is ignored and it really is great to hear of what is being done. You give me HOPE and no doubt many others too.
You can use my comment if you wish. It would be nice to know if possible, however.
Naproxen is also used in migraine specifically. Glad to hear it’s really helping you in both conditions.
To take action, the best thing you can do is go to the section "How You Can Help Make History" point 1 above. And forward a quick letter to your representative. I, unfortunately, cannot do this for you (or else I would). If we get enough people doing this and enough representatives on board the bill will pass and change will occur. It doesn’t take long though. It’s only a quick form. You don’t need to write the letter that’s been done.
Fortunately, there are many great groups now working to make change for migraine. I’ve listed many of them above. Find one that you like and contact them about helping out. They are always looking for more support.
Instead of an ice bucket challenge, people should be challenged by having a bucket placed over their head, and trying to live like that for X amount of time. It kinda-sorta mimics a migraine— makes it harder to see, it amplifies every little sound, prevents you from working or being present with people you love… it’s not a perfect comparison, but it might get more people’s attention than just another run. (Also, i can’t run, since strenuous exercise seems to trigger my migraines!)
Good idea AJ… we need all the help we can get with migraine advocacy.