Aplastic anemia, the disease my brother had, is a rare bone marrow disorder (it strikes 2 out every million people) that hasn’t been on the receiving end of much research funding. But there’s new legislation in the offing that might change that. On February 25, 2009, Representative Doris O. Matsui (D-CA), whose husband, the late Congressman Bob Matsui, died of a bone marrow disorder, introduced H.R. 1230--Bone Marrow Failure Disease Research and Treatment Act of 2009.
The act calls for:
-A national bone marrow disease failure registry, where researchers could combine their data in one place, sharing results and insights.
-Studies to determine what environmental factors can trigger bone marrow failure. Some diseases that cause bone marrow failure are genetic, other cases are thought to be triggered by environmental factors, like radiation and God knows what else. In Ted’s case, the doctors speculated that it could have been the glue Ted used to put model airplanes together, or a box of oranges too liberally sprayed with pesticide. They even autopsied the family parakeet, who died just about when my brother went into the hospital, to see if there was a connection. But there were no answers. My brother’s case, as in 50% of patients diagnosed with aplastic anemia, was deemed “idiopathic”—i.e. unknown, the scientific word for a shrug.
-Minority focused programs that would make information on treatment options and clinical trials available to minority communities. (Frankly, I don’t know if these communities are more prone to some of these diseases, or just under-served with regard to treatment.)
-Grants to help improve diagnosis and quality of care for patients.
I can’t say I’ve been particularly active in organizations designed to make things better for people with aplastic anemia or related diseases. I don’t know why. I know some people get very involved in disease-oriented organizations after they lose someone to that disease. I just never got interested, somehow. But I’d probably feel differently if Ted were still alive, trying to battle the disease. In fact, I’d probably feel outraged at how neglected it’s been, funding-wise.
I’m sure a rare disease doesn’t look like a good research investment to those handing out money, but if you or someone you care about is the one diagnosed, the “rare” label is irrelevant. You’ve been struck by lightning, now what? I hope this legislation gets passed. We can help by encouraging our representatives to sponsor the legislation. Please do it!
My Brother: Nine Years Gone
9 months ago