I am often afraid to tell my story. I desperately need health care reform, but I am painfully aware that few would welcome sharing the bill for my care. Unlike the millions of stories where appropriate preventive care or early treatment would have saved both money and lives, mine is a story of unrelenting, astronomical cost just to keep me going.
For some people, there is a price point on life, and I am beyond it - my treatment costs over $50,000 per month. Others find fault with the drug companies - the cost for the European version of the medication is "only" five or six thousand a month. That's with government subsidy for the blood supply needed, of course. The real cost is much higher, because it's simply very expensive to produce, which is part of the reason there will never be a generic. The other part is that there are fewer than 3000 patients identified in the US with this disorder. You simply can't sustain such an expensive product with so few potential customers.
So maybe I really am unsustainable. It's hard to face that possibility. Tonight it is especially hard, as I contemplate using some of my carefully rationed supply.
What is your price point?