The Fibrochondriac

I just got an interesting letter from The National Fibromyalgia Association:

On Tuesday, March 16, the National Fibromyalgia Association – along with members of the California NeuroAlliance – will be in Sacramento to meet with state lawmakers about proposed legislation that ensures continuation of care for prescription drug coverage.

The Continuity of Care for Prescription Drug Coverage bill (AB 2170), authored by Bonnie Lowenthal (D-Long Beach), prevents health plans and health insurance regulated by the Department of Managed Health Care and the Department of Insurance from increasing enrollees’ out-of-pocket costs for prescription drugs between annual enrollment periods.  This legislation is vital to ensure continuity of care and protect consumers with fibromyalgia and other chronic illnesses from unplanned out-of-pocket costs for necessary prescription medications.

Make your voice heard!

As a California resident, you have a story that is of immediate relevance to the lawmakers we will be meeting with on March 16.  We are looking for stories from people living with fibromyalgia about any unexpected increases in out-of-pocket costs for prescription drugs.

A few key points to consider in your response:

• When did the cost increase occur? Was it during the contract year, between annual enrollment periods, or upon plan renewal?
• How much was the out-of-pocket increase?  Did it double or triple?
• If the increase occurred between open enrollment periods, how did you find out about it? Did the insurance company notify you, or did you find out when you refilled your prescription at the pharmacy?

Please keep all personal stories to a maximum of two pages.  All entries should be submitted to Rachael Kronzek at the National Fibromyalgia Association via e-mail (rkronzek@fmaware.org) or fax (714-921-6920).  If you have any questions or need any assistance, contact Rachael Kronzek at the e-mail provided above or by phone at (714)-921-0150.

So if you happen to be a California resident and have had an increase in prescription costs…nows your chance to tell them about it.

My big beef is with Xyrem. I, like the majority of people with fibromyalgia, don’t sleep well at night. I have three (four on a bad night) different drugs I take at night to go to sleep. (Oops, make that five because I’ve been trying “edible” marijuana too…without a whole lot of success, but mostly because I’m too chicken to eat much.) I’d really like to try Xyrem but my insurance company would rather not pay for it if all the other drugs work most of the time. Xyrem is really expensive so if the insurance company isn’t covering it and I can’t afford it, then I’m not taking it.

So no, I don’t have any unusual out of pocket expenses because I can’t afford to have out of pocket expenses. I’ll stick with the generics that the work. Mostly. And I guess the marijuana counts as an out of pocket expense. Once I figure out how that works maybe it’ll be useful. Too bad I can’t write that off as a medical expense, eh?