A few years ago I thought we were on a roll. After all, between 2007 and 2009 there were 3 drugs FDA approved for fibromyalgia: Lyrica, Cymbalta and Savella.
What got me thinking about this topic? A visit with my new internal medicine doctor last week. I handed her my "therapy tracker" spreadsheet, an impressive list of 42 different medications, from non-steroidal anti-inflammatories to psychotropics, that I've tried over the past 8 years to treat my fibromyalgia symptoms. Sadly, the majority of these drugs have failed to help me manage my chronic fatigue, chronic pain and chronic sleep problems.
I asked my doctor to take a look at my list and see if there was anything new or different that I hadn't tried yet. She said she would review the list but wasn't optimistic there was anything left to try.
Coincidentally, I saw new medications mentioned in the October newsletter from the National Fibromyalgia and Chronic Pain Association (NFMCPA) later in the week. As you might recall, the NFMCPA is the group that took over the patient care responsibilities from the National Fibromyalgia Association (NFA) back in March of 2011. According to the article, there are only 2 promising drugs in clinical trials: Effirma or flupertine and TNX-102, a sublingual tablet form of Flexeril or cyclobenzaprine. You can read more about them here.
They didn't mention an upcoming clinical trial that came to my attention this past summer. Dr. William Pridgen in Alabama, while treating patients for a herpes simplex I virus related stomach disorder, discovered the anti-viral cocktail used improved fibromyalgia symptoms too. According to an article over at the ProHealth website, a phase II clinical trial is being planned for February 2013 to test the efficacy of this treatment in a larger group of patients with fibromyalgia.
Needless to say, I'm concerned those of us with fibromyalgia are lacking a highly-visible, nationally recognized and respected non-profit organization fighting for our needs. A clear example is the fact that National Fibromyalgia Day dropped off the National Health Observance calendar in 2011. The NFA used to serve as the contact organization for this awareness day.
Pondering the state of fibromyalgia advocacy on the national stage got me asking questions that I probably will never get the answers to, like:
- Is it a coincidence that the NFA's heyday corresponds to the same time period during which the FDA approved the first 3 drugs for fibromyalgia?
- What role did the NFA have in the development, FDA approval and marketing of the first three fibromyalgia drugs?
- Did the demise of the NFA adversely affect new fibromyalgia drug development?
Leaving the past behind, I'd really like to know more about the current state of fibromyalgia research and drug development. I'm curious enough about this topic to considering making this my own personal research project, that is if I can't find another reputable source already doing this.
What do you think? What impact did the end of the National Fibromyalgia Association (NFA) have on our fibromyalgia community? Why do you think we haven't had any new FDA approved drugs for fibromyalgia in the last 3 years? What do you think needs to be done to get this important issue addressed with medical researchers and pharmaceutical companies? Please share your thoughts with me in a comment below.