Migraine Advocacy with Endless Funding or in Reality?
3 Thruths and a Lie About Migraines

Mondays and Migraine Advocacy Blues

MimeCrying2000Mondays never seem to be very good days anyway, so maybe it's fitting to write today about something that gets me down and makes me feel down as a patient educator and advocate.

There are two issues, somewhat related, that sometimes leave me shaking my head and throwing my hands up in the air.

The first issue is all the people who post to my sites or email me asking how they can get help to see a doctor and get medications for their Migraines when they're unemployed, uninsured, or both. Sometimes, I look at what we've paid out for my medical care and prescription medications and cannot comprehend how people without insurance can make it. Between prescription medications, doctors' visits, blood and other tests, and a three-day hospitalization, there have been months this year when every penny I made went to pay medical bills. And that's with what's considered to be good medical insurance. I find it so hard to fathom that, in this country, we have people who try their best but still can't afford to get medical care. That's just wrong. I have to admit that when I see one of those television commercials asking people to donate to organizations that fund medical care in other countries, I want to shout at the television, "What about people right her in the United States?" It's so awful not to have good answers when people come to me and ask me how they can get medical care.

I may step on some toes with this one, but so be it. The second issue is people who ask other people over and over what they can do for their terrible Migraines, but never take the advice offered, never get proactive and do anything for themselves. One example of this is a woman who has horrid Migraines, and her doctor hasn't the slightest idea what to do to help her. In such a case, I recomment going to a new doctor, often a Migraine and headache specialist. This can be a problem for some people because there aren't enough specialists, and some people have to travel significant distances to see one. This woman, however, lives less than an hour's drive from an excellent specialist, but she won't go. Why? She says his office is too far away. Are you kidding me? If you live in a big city, it can take you that long just to drive from one side of the city to the other. Shoot, it can take longer! (I should mention here that the same woman how won't travel less than an hour for Migraine care WILL go two or three hours away once a month to shop at an outlet mall.)

Another example of this is Migraineurs who won't take even five minutes to help with advocacy efforts. Migraine is horribly misunderstood by much of the general public. Migraine research is horribly underfunded. Twelve percent of the U.S. population have Migraine, yet the NIH allocates only one-tenth of one percent of their budget to Migraine AND all other headache disorders combined. One of the problems we face is finding effective preventive treatments. Of all the medications used for Migraine prevention, NONE of them was developed for Migraine. Not one. They're all medications developed for other conditions, then found to help some with Migraine too. The lack of research funding helps keep us in that position. Yet when opportunities arise to advocate for better research funding, most Migraineurs don't participate. There have been several times when adocates have gone to Capitol Hill to speak directly with Senators and Congressmen about this issue. Following those events, the Alliance for Headache Disorders Advocacy asks Migraineurs to send an email to their Congressmen and Senators We use a system to facilitate sending those emails. A letter with the key points is prewritten, leaving space for the Migraineur to add to it if they wish to. When your mailing address is entered on the form, the system automatically sends it to the right Senate and Congressional offices. So, an email can be sent in literally five minutes. Yet when Migraineurs are asked to participate and send an email, fewer than two percent do it. What's that about anyway? They can't take five minutes to help themselves and other Migraineurs? I truly don't understand it.

Well, there you have it. These are things that make me feel sad and burned out. But I can't and won't let those feelings last. There's so much we can do to help ourselves. Tomorrow is another day, and each day can be filled with either despair or promise, depending on how we approach it. Tuesday, I'm ready for you. Ready to put aside the issue I wrote about here and work toward making things better for all of us with Migraines.


HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

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© Teri Robert, 2011
Last updated November 7, 2011

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