This is an open letter from a really good friend of a friend about her son and how the health care bill, if it includes annual caps, will affect him. I know him. He’s a bright young man with a great future and I can’t imagine how that legislation would alter his life. Please read, and if you agree, contact your representatives. Thank you.
Unfortunately, I live in Washington, DC – the last plantation in the United States where I don’t have a representative vote in congress. In the comprehensive health care reform plans that are being circulated among the House and Senate, all the legislation has eliminated lifetime caps on insurance. However, they still give the insurance companies the ability to institute “reasonable” caps per year under the bill.
Hunter, has severe Hemophilia A. It costs approximately $480,000 per year to keep him well. With that money he will have a normal life expectancy and will go on to live a productive professional life, pay taxes, help the economy, etc. Without that treatment, he will, within 10 years become completely disabled and be on SSI for the rest of his life with the government picking up the tab for his life and his health care. There is no middle ground in Hunter’s treatment. He is either treated three times a week and he doesn’t bleed into his joints or we wait for bleeds and treat them as they come and he will be disabled within 10 years. No treatment is the equivalent of some treatment when it comes to Hemophilia and its development into a lifetime disability. In addition, the life expectancy of men with Hemophilia, prior to the synthetic treatments, was somewhere around 40 years old because of the complications that arose from immobility as well as the capacity for them to bleed to death internally and silently from unknown causes.
In Hunter’s lifetime, he has almost died twice – once at birth because we did not know he had Hemophilia and another at 3 when he developed a massive abdominal bleed. Fortunately, he was treated well and effectively and no caps on his treatment were instituted. I want my son to live to be a productive, happy and mobile adult. But I need you to call your representatives and pass this on to friends and friends of friends to make sure that these caps are not allowed to be inserted. You would want this if it was your son. Thanks.
Julie S. Doar-Sinkfield