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You can help make a difference

I am sick and tired of all the sympathy, understanding, and support going to patients of other diseases while migraineurs are dismissed, ignored, and accused of faking our illness. Please don’t misunderstand, all patients with debilitating diseases deserve our caring, loving support. They deserve the best possible treatments and research dollars to find a cure. It’s just not fair that Migraine and other headache disorders are not taken as seriously. If I think about it too long, I get really angry. However, anger can be useful if it motivates you to facilitate change.

Here’s the problem.

Much of the research into the cause of a disease is done by the National Institutes of Health. Various disease groups are allocated specific amounts of the NIH budget by Congress. It takes lobbying efforts to change a specific disease group’s allocation. The current budget for Migraine is $20 million per year. The most recent estimates tell us that there are over 38 million people with Migraine in the US.  That’s about 53¢ worth of research per person.

Out of 237 funding areas, Migraine ranked 190th with only $19 million allocated for 2013. The estimated amount for 2014 and 2015 is only $1 million more. Without the dedicated efforts of patient advocates who participate in Headache on the Hill each spring, we wouldn’t even have that. Additionally, there is only $25 million allocated for Headaches in general and nothing allocated specifically for Cluster Headaches. That is a grand total of $34 million going toward research for over 200 different headache disorders.

In comparison, the 2013 NIH allocations for other diseases with similar disability profiles are almost all higher than for headache, migraine, or cluster headache.

Cancer $5,621 million Autism $   192 million
HIV/AIDS $3,074 million Epilepsy $   156 million
Aging $2,593 million MS $   115 million
Diabetes $1,061 million Lupus $   108 million
Obesity $   836 million COPD $   101 million
Breast cancer $   800 million Child leukemia $     77 million
Alcoholism $   455 million Infertility $     74 million
Depression $   429 million Chron’s $     76 million
Colorectal cancer $   302 million Huntington’s $     65 million
Pneumonia $   115 million ADHD $     60 million
Brain cancer $   281 million ALS $     44 million
STDs $   275 million Uterine cancer $     42 million
Arthritis $   258 million Smallpox $     40 million
Influenza $   251 million West Nile Virus $     29 million
Lung cancer $   233 million Headache $     25 million
Asthma $   229 million TMJ $     21 million
TB $   218 million Migraine $     19 million
Hypertension $   215 million Cluster Headache $        ZERO

The latest estimates tell us that Migraine costs the US economy over $31 billion a year in lost productivity.  That doesn’t include the healthcare costs and the emotional toll it takes on families. Migraine patients are also at increased risk of stroke, cardiovascular disease, and major depression.

Fortunately , there is an opportunity to make a difference.

A large patient organization dedicated to raising awareness and research dollars can make a difference. That’s how cancer and HIV/AIDS got to the top of the list. Fortunately, an organization already exists just for migraine patients. It’s the American Headache and Migraine Association (AHMA). Sponsored by the American Headache Society, AHMA is dedicated to providing support and education to migraine and headache disorder patients and their families. Whether you struggle with daily migraine attacks or have achieved total remission, AHMA is for you. If you’d like to know about AHMA and how you can be a part, just visit www.AHMAisHope.org. Membership is affordable and open to patients with all types of headache disorders, not just Migraine.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ellen H
    4 years ago

    YOU KNOW WHAT MAKES ME CRAZY???

    It seems that all migraine research is being done on patients who have episodic migraine that comes and goes, but nothing is being done for those of us who live with chronic migraine; chronic, meaning, no relief at all, migraines that are present 24/7, decade after decade of our lives.

    I remember when I was about nine years old and playing in the front yard, and it came to me that my head hurt all day, every day, and had been going on for so long, that I could not remember a single day of my life without constant, daily pain, from the time I woke up in the morning until I went to sleep at night.
    And now it is nearly six decades later and I am still living with constant daily pain. Yes, I have a neurologist who specializes in migraines. And yes, we have tried everything, and I mean everything. And still no relief. The migraines seem to morph and change through the decades. But they never get better.

    Recently, I tried to fill out a form about migraine pain. I think the form may have been about signing up for a trial of a specific medication. The questions drove me crazy. They seemed entirely unrelated to my life and my migraines.

    The questions went like this:

    How often do you have a migraine? How long does it last? When do you feel nauseous, before the migraine, during the migraine, or at the end of a migraine? Do you take medication? Do you take it at the beginning of the migraine? How long does it take to kick in? How long does the migraine last after you have taken the medication? Do you have an aura? Does it come before the migraine? Does it start with the migraine?

    I was becoming extremely tense with each and every question. None of the questions came anywhere near to describing the kind of migraine I have: that is, constant, never-ending, no beginning, no middle, no end. There were a couple opportunities for the patient to make a statement or comment. And I did so. I wrote that none of the questions even came close to describing my migraines. The questions were too narrow to accommodate my situation. The questions were too confining and basically eliminated any discussion of my specific problems.

    It seems that most of what I read about migraines concentrates on manageable migraines, and there seems to be little, if any at all, recognition of a different kind of migraine. Nobody asks about chronic unrelenting ceaseless migraine pain. And it occurred to me that very likely, no one is researching Chronic Migraine. It seems that the drug makers are only interested in manageable migraine because that is where the money is. It seems that researching chronic migraine would be too expensive, without much in monetary reward for the drug industry.

    My neurologist is frustrated at not being able to help me. And I am frustrated because I feel like research does not take much interest in chronic migraine and may not even believe that such chronic migraines exist.

    A short story: At one point in time, I was working in a neurology clinic performing EEG’s on migraine patients. Nearly every day representatives from the drug companies would come in at lunch time and sit and talk with the doctor and staff persons. There was this young guy from a drug company. I thought he was a bit cocky. And then he made this comment:

    Paraphrased ~~ “So how long does a migraine actually last? You take a pill and in a couple of hours the migraine is over and you are on your way again back to work and life.”

    I just about choked on my lunch, and I decided to take a shot back at him, and I said: How about a migraine that lasts 96 hours????

    My migraines tend to ebb and flow, increasing and decreasing, but never ending. The worst of the pain can last for days before subsiding into lesser pain.

    The room full of people went into stunned silenced. It was a very uncomfortable situation for the drug rep. He was speechless. It occurred to me that drug reps are indoctrinated to believe that all migraines are manageable and all migraines have a beginning and an end, usually a couple of hours. No wonder that surveys never ask about chronic migraine.

    I thought, if this is the information that is being drilled into the drug reps, then that means that the drug companies are completely ignoring several million people who live with unceasing, unrelenting pain.

    And all of this makes me very sad.

    Thank you for “listening” to my story. Ellen H.

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