Today I'm asking some questions --
"Who am I? professional musician, multiple sclerosis patient?"
I am a professional musician. This is how I earn money and pay bills and taxes. I have played the piano since the age of 7 and french horn since the age of 11. I never questioned why I love music, I just do. But you might be amazed at how many professional musicians cease to listen and explore music over time. I'm probably one of those...I like to stick to the things I know well. It's comforting, like homemade macaroni and cheese.
I am a patient living with multiple sclerosis (and rheumatoid arthritis...and hypothyroidism...and some depression mixed in, although well managed.) These things just crashed the party and forced their way in, not invited...but here to stay I guess.
"What am I? health policy wonk, patient advocate, or educator?"Last summer I had been reading a health wonk expert's blog and encountered a post which made me want to comment. I had a deep need to say something. But a blogger account was necessary to proceed - ok done. Then the comments were moderated by the blogowner - ok wait. Then...my comment was approved and posted - what a little thrill that was. Somebody thought my comment was worthy enough to allow on their site - somebody determined that I had made a valid point. Very cool.
Then, my sweetie asked me a thoughtful question. He wanted to know what I was going to do with all of my research and the information I had gathered since the ms diagnosis. Hmmm...I had files on my computer full with interesting stuff...I had piles of paper proving that my struggles have been real...I had valuable first-hand experience with the "healthcare system" which few others gain (quite thankfully.) What should I do with that?
I started this blog with the intent to incorporate bits of my personal experience with thoughtful commentary on the issues around healthcare reform. At first, I was hesitant to discuss my struggles but they are what brought me to this point in time.
"What have I learned so far?"
My primary challenge has been from the cost of medication and the lack of real help available and the surprising programs which actually do work. Then I became aware of the briar patch which is health policy and those who seek to influence it. Before MS, I had never given much thought to how health insurance influences medical care, much less give any thought to the concept of a single-payer national health system or it's reputation as socialized medicine. I have researched the role of taxpayer subsidies in healthcare, the repeated SCHIP vetoes, and government programs for the disabled.
I learned of a minor drug company which was using orphan drug status to justify it's 15x price increase for a drug indicated in the treatment of MS exacerbations. The drug company, Questcor, claimed that income losses were to blame, announced their third Quarter earnings, created a perverse opportunity for easy profit, and in December saw key insiders cashing in some amazing profit.
"What drives me to continue talking to myself, although I know there are a few eavesdroppers out there?"
I have contemplated the reasons why MS patients do not have generic biologic medications available, how much funding is going to MS research, and how patients can become empowered with knowledge. Those who wish to influence public perceptions of the pharmaceutical industry, manipulate policies regarding expensive patients, or invade the privacy of the doctor/patient relationship drive me absolutely crazy.
"How will this blog make a difference?"
For this, I don't really have a good answer yet. I didn't start out with lofty goals of being a patient-educator or a patient-advocate. I'm not an owner of a healthcare consultanting company or a political pundit. Nobody is paying me to blog, conduct research, or discuss issues surrounding healthcare or multiple sclerosis. My background is in education but I have never been much of an activist, always preferring to stay in the background. I do enjoy interaction, love comments and increased traffic, and hope to be able to use my growing expertise to help in some humble way.
Final question - "Where do I go from here?"