Today was the First Annual NFA Advocacy Day at the State Capitol. www.FMAware.org We were there to ask for support for a resolution to create a task force.
My team leader and I were given 6 legislators to visit, give them an informational packet, and ask them to sign on to the Resolution creating a fibromyalgia task force. Since these were legislators from her area, I let her do most of the talking. My primary input to the conversations was that although the ACR came up with diagnostic criteria in 1990, ten years later I was still running into doctors who didn't know about it and only wanted to push anti-depressants instead of the pain pills I really needed, so the portion of this Resolution calling for education of health care professionals is much-needed. We only spent about 5 minutes in each office, so it was not a major physical challenge, even for two women, one limping, the other in a wheelchair.
NFA mentioned that although there's now a prescription medication for fibro, insurance companies are denying access to it; one of the things that the proposed Missouri bill does is to say that insurance companies cannot refuse to pay for FDA-approved/doctor-prescribed medications.
We need to do this in all 50 states, for both CFS and fibro, to educate the legislators that "it's real" and "too many doctors are unaware of the research proving it's real".
The consultant hired by my insurance company asked me "how did they expect you to get better if they weren't treating your pain so you could sleep?", but because the doctors were not properly educated about fibro, they thought they WERE treating my pain when they told me to take NSAIDs; they didn't even know the most basic information, which I kept trying to tell them, that this is not inflammatory pain, therefore anti-inflammatories were not going to help. All they did -- all they would be expected to do -- was give me an ulcer. (And this is what that medical group considered a "fibromyalgia specialist"????!!)
Fibromyalgia affects 10 million people in the US ... that's more than MS, Alzheimer's and Parkinson's combined. As a result of that prevalence, there should be more doctors who know at least the most basic information, that this is neurological pain, which cannot be treated with Advil, or anti-depressants, or psychotherapy.
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