In the United States when President Nixon signed the “Sickle Cell Control Act “ (1972) the life expectancy for people living with sickle-cell disease was 14 years old. In the rest of the world it was 5 years old (per World Health Organization).
Since that time, in America, treatment and care for pediatric patients was greatly improved. I remember going to a sickle-cell disease clinic in 1972 where doctors finally spoke to me about the disease and what it meant to live with it. I was twelve.
Fast forward to 2011, I’m fifty-one years old and many of us pediatric patients are still alive. We’ve lived passed the prognosis of death (14 years) and we are now in our fifties and sixties. This is where the story gets complicated. People with sickle-cell disease (since 1972) received better treatment and that extended our lives.
Currently, in America, healthcare organizations (and insurance companies) do not know how to deal with aging sickle-cell disease patients. Now that we’re living longer, we’re dealing with long-term complications such as; heart disease, stroke, renal failure, retinal detachment, leg ulcers, etc. etc. etc.
In addition, many sickle-cell patients are on Medicare and Medicaid. Since there are no clear guidelines on how to treat these aging patients, Medicare and Medicaid are not approving or reluctant to approve treatment & medications.
The
National Heart, Lung, and Blood Institute (NHLBI) has recognized this issue and is addressing it by creating “Treatment Guidelines” for the medical community.
By 2012, the healthcare community will know “what the heck” to do with aging sickle-cell patients. They will have guidance on treatment and care of
adult sickle-cell patients, just as they did for pediatric patients in the 1970s.
There is still work to be done to get Medicare and Medi-cal to NEVER DENY treatment or medication for people suffering with sickle-cell disease. But that’s a battle to be waged toward our elected officials by notifying them, “This is unacceptable!” First things first.
People with sickle-cell disease are living longer, thank God, and now the healthcare community will get information about treatment and care for us. All we want is to live happy and healthy lives, now someone’s willing to help.
Thank you
NHLBI for taking the lead in this effort.
(Information from teleconference meeting held with NHLBI and various Sickle-cell Disease Advocates and bloggers September 2, 2011)
listen to meeting @ (855) 859-2056 #97067391, (give your name and Our Voice blog)
