Migraine: the North Korea of Disabilities

When your disease is being compared to North Korea, then you know you’ve got problems.

That was my thought  last month as I listened to University of Vermont neurologist Dr. Robert Shapiro share some of his recent findings on government migraine-research funding. He  made this comparison in a training session with nearly 50 lobbyists (mostly headache specialists, plus some writers like me mixed in) who participated the next day in “Headache on the Hill,” which I talked about in my last post. “Headache” is the lobbying effort to encourage Congress to correct extreme imbalances in federal research on migraine, which causes the U.S. at least $31 billion in total economic cost.

In Dr. Shapiro’s analogy, the state of migraine funding equals North Korea, while epilepsy is represented by South Korea. And that makes sense. Back in the 1970s, both diseases received comparable funding, but then epilepsy advocacy advanced while such efforts for migraine never materialized.

Thirty years later, the results of these divergent paths are evident: Aerial surveillance photographs reveal a thriving, lit-up South Korea, and a North Korea shrouded in bleak darkness. Similarly, epilepsy–which causes much less overall burden and disability than migraine–now receives about 30 times more funding, by Shapiro’s estimates for 2009.

In his studies, he compares migraine funding to that of many other diseases, but epilepsy is particularly illustrative because of how much it has in common with migraine, including similar neurology. Those who suffer from either ailment take similar drugs, and are more likely than others in the population to have both problems at once.

The difference in treatment progress can be seen in the fact that, as Shapiro points out, “there has been virtually no innovation in migraine research” since 1992. Since that time, five new major drugs were developed for epilepsy, compared to only one, Imitrex, for migraine. (The six other Imitrex-like “me too” drugs for migraine don’t count.) Shapiro specifically credits the federal drug-screening program for pharmaceutical advances with epilepsy, saying that a parallel program for migraine “would be the single-most important thing we could do to accelerate new drug development.” Federal funding also influences medical schools, which now train relatively few headache specialists despite headache being the number-one reason for visiting a neurologist.

In making comparisons to such illnesses as epilepsy, Shapiro repeatedly stresses that his aim is not to deny well-deserved funding for them; he would just like to see migraine more proportionately funded according to its proven impact on disability. His original data provides an invaluable basis for comparison, which we never before had in such concrete terms.  While the NIH does not publish specific figures on federal migraine research funding, Shapiro and colleague Dr. Todd J. Schwedt arrived at an estimate of between $6.8 and $13 million a year. They believe that amount is at least one-tenth of what is needed.

But deep-set biases remain against considering migraine a serious disability, despite ample research to the contrary. As Shapiro and another colleague explain in an editorial for the journal Cephalalgia, disabling migraine is still confused with the common and milder tension headache.  Also, many doctors have been locked in a 100-year-old mindset that migraine, as an “invisible” disease primarily associated with women, is mainly the result of neurosis, not neurobiology.

To counter this bias and get migraine its fair share of funding, Shapiro hopes to mobilize migraine sufferers on a grassroots level. They and their allies can start by signing up on the website of the Alliance for Headache Disorders Advocacy, which will alert followers to future strategic political campaigns. If even a fraction of the estimated 60 million likely migraine sufferers mobilize, he suggests, we will account for a major force–one difficult to continue to ignore.

Comments

  1. I signed up!

  2. PioneerGrrrl says:

    As somebody who has both, I don’t think you’re aware of the serious problems which a seizure does cause.

    I’ve actually broken bones and chipped teeth from my serious seizures, requiring surgery and hospitalization. Other consequences include loss of blader controll.

    My most serious migrane merely required time off from work and rest at home in a darkened room. It was annoying but not life endangering.

  3. i am curious whether any of those working to increase funding/support/awareness about headaches have joined forces with disability rights activists who focus on other invisible disabilities (such as psychiatric disabilities, learning disabilities, chronic pain, autoimmune disorders, etc.)? It seems like there could be some good synergy there.

    I used to work with college students with disabilities, and many students with invisible disabilities complained that they wished their disability was visible, so that people would take them seriously and acknowledge their need for and right to accommodations. So I think this is a really important issue and I am glad you are writing about it!

  4. Here’s a good photo illustration of the N/S Korea contrast, courtesy of Dr. Shapiro:
    http://www.frumforum.com/images/photos/scroll/korea.jpg

  5. PioneerGrrrl says:

    A problem with the college environment (and speaking from observations of classmates…etc) is that irrespective of whether a disability is visible/invisible, incoming students with disabilities frequently do not get taught the very signifigant program differences between k-12 special education and the college’s ADA.

    So unless we’ve independently researched ADA before enrolling or the high school did provide appropriate transition from special education (which would include those legal clarifications) the students seriously believe a college’s rules are the same.

    We were taken seriously and did have a right to accommodations. But as adults, we too had a responsibility to understand that and also how college was not like high school.

    So we needed to learn how disability accommodations are provided to ourselves and other adults in order to then properly access them.

  6. PioneerGrrrl says:

    And I’m adding that a ‘right’ also includes knowing how to properly self-advocate for yourself as is required in those college…etc environments.

    We’re not taken seriously unless people with disabilities come into these environments understanding what is/is not the law. If the student wants acommodations they have the duty to understand how the law in a college enviroment covers people with disabilities.

  7. My observation: if a disease/illness is found more often in women than in men, it is not taken as seriously as illness in men. Research for women is lacking, even in diseases that are found in both: e.g. heart disease. There was an article recently on a study of women dying from heart attacks more often than men because they were not given the same kind of treatment as men receive, as often (angioplasty). Reported by AFP and on google news a week or so ago. Cited was that there is not much research, still/yet on women and heart disease/attacks.

    I have experienced a severely disabling disease that more women than men experience and it’s not been taken seriously. For an excellent op ed in the newspaper that has done much to “diss” ME/CFS, my disease/illness, see Hillary Johnson’s “A Case of Chronic Denial”, Oct. 21, 2009, New York Times Op Ed. A physician, Dr. Nancy Klimas, who treats patients with AIDS and patients with CFS (politically named in the US and called ME in England), said she’d rather have AIDS than CFS.

    Migraines are nasty and disabling for many. My mother had migraines (but not in her old age). She could only cry and vomit until she got better in the years of my childhood. (I’m just at 7 0 or 17 1/2 leap year birthdays). I use medical biofeedback for allergic asthma, my other illness and while I am loathe to offer suggestions, I do know that my former OBGYN asked and referred a friend of his with migraines to biofeedback treatment, which helped a lot. Like any other medical treatment, “caveat emptor” – the field abounds with quacks, so pick carefully; do research with medical behavioral societies.

    Relating to other comments: I identified with the disability community before I had a diagnosis of CFS chronic fatigue syndrome in the late 1980s. There is much splintering of disability when the “medical model” is used: such as groups forming and organizing for research and political pressure in their own illness. I am very careful to avoid “whose is worse” in terms of disability because each person’s struggle is worthy of respect. Telling someone that someone else has it worse is offensive. There are political groups that cross “medical model” divisions, such as ADAPT http://www.adapt.org and in NYC Disabled in Action http://www.disabledinaction.org

    In my experience of being disabled by severe illness (ME/CFS) for over 2 decades, I have noticed that some women have not wanted to consider themselves disabled. Having had both “invisible” and because I have to use a wheelchair in my infrequent trips to go out, due to ME/CFS, I have experienced people’s reactions to “visible” disability. A mix, but I can’t get into a lot of buildings and people resent my taking sidewalk space at times and others fall over my wheelchair or hit me in the head or shoulder with bags, so it’s “mixed”.

  8. PioneerGrrrl says:

    And I myself do identify as a disability rights activist. I am shocked to see Paula Kamen’s naive perspective, which I believe is offensive (including the ‘Korea’ analogy).

    From what I’ve personally experienced, yes, it is these disabilities (both of them) being hidden which creates their respective challenges. But it’s also our not being aware of our responsibilities and obligations to obtain and retain our rights.

    First in college and now in the workplace, I have realized that I have different legal rights/responsibilities than had existed in the k-12 special ed programs I was previously enrolled in. But I honestly also realize that other women don’t have this conciousness yet

    So they go without an understanding of what can and cannot be done, including their role-responsibility in the processes.

    Whether disabilties are visible or hidden, unless we know what is going on in the world and the appropriate procedures, we do not successfully utilize our rights and be those participatory citizens.

  9. PioneerGrrrl says:

    I’ve also noticed the ‘prioritizing’ of disability which you write about.

    Since my disability is hidden, I frequently get hostile get looks when swiping a discounted bus pass. Unless I have a seizure on the bus at the bus stop, there is no way of accurately knowing what disability I have.

  10. PioneerGrrrl says:

    Sandra, the commet about gender bias in research is interesting.

    I actually have epilepsy through treatment for hydrocephalus, a condition which mostly affects boys. The scar tissue for my shunt is what caused the seizures.

    And my parents said that after I was born and had my corrective surgery, nobody initially had realized I was having seizures. The doctors had never thought to observe me for it.

  11. PioneerGrrrl, Thanks. Nice to meet you. My name is SANDA, no r.
    There’s a personal blog by Stephen Drake (who is the activist, researcher and blogger for NotDeadYet)- Water on the Brain and Lots on My Mind http://hydrocephalusandme.blogspot.com My skills online are still “new”-ish, so I hope I typed the url correctly. Stephen Drake links to his personal blog on http://www.notdeadyet.org as well, in case I didn’t spell/type correctly.

  12. PioneerGrrrl says:

    Thanks for the link. Sorry re: my mispelling.

    I like these links. I’d like to see Ms. do stuff about disabilities and women–yes, from the disability rights perspective.

    Because I was having to work to self control my own neurological system when I was a little kid, understanding reproductive rights then was REALLY easy for me. I should want to be the one who decides what happens to my other body systems. So I realized early on where I was in the debate. And I don’t see this as a ‘conflict’. I see the two movements ultimately and successfully reinforcing each other.

  13. PioneerGrrrl, I’m glad that you’re not disabled by your Migraine. Sorry that epilepsy has disabled you.

    No pissing contest here, but there is so much more to Migraine than the symptoms which can be solved by dark rooms and time off. Neither dark rooms nor my Meniere’s and Migraine disability retirement have increased my functioning at all. Sadly, neither has all the medicine I’ve taken and tried. Not sure that prescription drugs are the way to solve this incurable disease.

    It’s only when you take the “headache” out of Migraine that the disease begins to make sense.

  14. Speaking as yet another person with epilepsy and migraines, “epilepsy–which causes much less overall burden and disability than migraine–” is the most ridiculous statement I’ve read in some time. Ms. Kamen, I’ve read and enjoyed your book on chronic headache, and saw a lot of myself in there – but do you honestly believe this? Because, you know, migraines don’t actually kill you. Epilepsy often can. If it’s not a seizure that gets you, it’s SUDEP, or some activity during a seizure (drowning in the shower, walking into traffic).

    My migraines are pretty awful, but my epilepsy is far worse. With migraines, I lose a few days a month to pain, nausea, and associated effects. I lost six *years* struggling to find an effective treatment for my epilepsy, with side effects running the gamut from no short-term memory to inability to walk without falling over to double vision to, well, a whole lot of other things. In addition to the seizures that just plain rob me of my brain and body.

    Epilepsy is far more disabling than migraine. I honestly don’t think you’ll find a medical professional who thinks otherwise. It’s like comparing a splinter to an amputation.

  15. Shira,
    Thanks for your feedback. You bring up the chance for me to make a very important distinction here.

    Yes, I agree that epilepsy can be much more disabling in an individual’s life than migraine, and certainly more fatal. But my comparison was with OVERALL disability in the entire population, because migraine IS SO MUCH MORE COMMON than epilepsy. This is by several measures, including overall numbers of healthy years lost to the disease. See this link to this journal article discussed in the blog(PDF]:
    http://www.allianceforheadacheadvocacy.org/letters/NIH%20funding%20Headache%202007.pdf

    That says that migraine “leads to >85% more lost years annually
    from death or disability than the epilepsies.” And it is backed up by a citation to a major federal study.

    As I also point out at the end, no one is saying that epilepsy isn’t very serious and doesn’t deserve all the funding it currently receives. We’re using it as a role model, for how epilepsy advocates have been well organized and have successfully gotten funding over the years, in contrast to migraine.

    I should also point out how much disability from migraine varies even among those with migraine. For some, it’s an infrequent annoyance, and for others, it seriously limits every aspect of life. They range from those who may may have it once a year, to those who have a constant headache with daily migraine attacks, involving continual vision impairments and nausea (a condition called “chronic migraine).

    Yes, as Sandra notes above, everyone’s disability is worthy of respect, and too much comparison of who suffers most with what is ultimately a no-win game. But these measures of total years lost to the illness, when referring in general to the total population, can be useful to at least start to show how migraine has been left behind with funding.

    Paula

  16. As someone whose life has become dominated by chronic migraines I appreciate you writing this article to shed light on the research situation, Paula. I’m a great admirer of your work.

    I was an attorney at the beginning of my career when I was forced to stop working seven years ago due to migraine disease. I have tried hard to find an effective preventative regimen, but had no luck thus far. I am on Social Security Disability and continue to hope for a breakthrough development that might give me my life back.

  17. I hope everyone who cares about this issue got your action alert from the AHDA. If not, PLEASE visit the website to send an e-mail to your Congressional delegation in support of greater research funding. We’re making progress, but we have to keep the momentum alive.

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