Insurance Woes

Beka - I got a telephone call from a dystonia patient. She had found me through my revamped Care4Dystonia Web site. She called, upset about health insurance difficulties. Like me, she too had had deep brain stimulation (DBS) in 2004 for generalized dystonia. She lives with her mother and collects disability. Medicare was causing difficulties in reimbursement for DBS programming. My own DBS programming happens every 6 to 8 weeks; each session cost about $3600 dollars according to my medical bill receipts.

As I listened to her insurance woes, I wondered what I was going to do when my COBRA benefits ceased in July? Work even more overtime hours? I am going to join the 46 million dollar club – 46 million Americans today who have no health insurance. Not all of them have hardware in their brains!

Maybe placing the hardware or even undergoing the procedure had been a mistake? DBS is FDA-approved for the treatment of Parkinson’s disease and tremor. With a diagnosis of dystonia, DBS is only approved for “humanitarian aid,” which now presented major upcoming healthcare coverage problems not only for me, but also for about 300 others who have undergone DBS for dystonia.

Health insurance companies are finally asking for data pertaining to the efficacy of DBS in the treatment of dystonia. Data varies, and is relatively inconclusive. Oh my!
Why can’t we come up with a plan for universal healthcare coverage? Would that really solve these sorts of dilemmas?