A woman on my forum who is in constant pain with fibromyalgia and has no health insurance recently urged everyone to write to Presidential candidates Sen. Barack Obama (D) and Sen. John McCain (R) to urge them to do what they can to help people like us.
I was inspired by her story, and by all the people I deal with every day who have so many burdens because of their illnesses. The following is the message I sent to both campaigns:
I'm 37 years old, and a year ago I was forced to leave my career in TV news because I have fibromyalgia. I'm one of the lucky ones, though - I have a husband who has excellent health insurance through his job and skills that I can use to work from home.
My job now is as About.com's Guide to Fibromyalgia and Chronic Fatigue Syndrome. Every day, I hear from people who are too sick to work, in fact can't even function at the most basic level - yet can't get social security disability and have little or no insurance. I'm regularly brought to tears hearing about the lives of these people.
Just today, I found out one of my regular forum members is too poor to buy the supplements and healthy foods she needs to stay functional. She's in intense, unrelenting pain.
The only drug approved for treating fibromyalgia is Lyrica, which is incredibly expensive ($6 a day for the lowest dosage) and isn't covered by most insurance companies. This drug comes with some horrendous side effects, and doesn't work for many people. The other drugs in the FDA pipeline already are freuqently used for treating fibromyalgia but often have little effect or cause side effects as bad as the conditions they're supposed to treat.
Not one drug has been developed specifically to treat fibromyalgia or chronic fatigue syndrome - instead, drug companies are trying to get old drugs approved for a new use, and not one of these medications addresses the full mechanisms believed to be behind these debilitating conditions.
I can help these people find treatments and make lifestyle changes that help them feel better. I can support them through bouts of exhaustion, pain and the depression that inevitably follows. But I can't pay their bills and get them medical care when no one will treat them. I can't research new medications or a cure. We need our government to help with that.
I'm telling you this on behalf of the thousands of people I'm in contact with through my site. Many are desperate for help, many others have lost hope that help will ever come, either to relieve their symptoms or to alleviate the financial toll their illness takes.
What we need is universal health care; disability reform so that money gets to the people who need it most, and doesn't take several years to get there; and more research funding so we can someday have better treatments, fully understand the causes, and possibly work toward a cure.
Those of us with these illnesses have very few allies. We're hoping you will be part of the select group working to make our lives better.