The Bone Marrow Failure Disease Research and Treatment Act was re-introduced by Representative Doris Matsui [D-CA] on February 10, 2011.
Now known as HR 640, this bill is very similar to HR 1230
that was approved by the House of Representatives but not the Senate last year. Representative Matsui, whose husband Representative Bob Matsui died of MDS in 2005, has spearheaded the effort to get this legislation signed into law.
HR 640 seeks to increase the government's commitment to researching and treating aplastic anemia, MDS, PNH, and other acquired bone marrow failure diseases by directing the U.S. Department of Health and Human Services (HHS) to combat these diseases through a strategy that includes:
- A national bone marrow failure disease registry so that researchers can combine their data in one place, yielding more effective research designs and better results.
- Pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors cause people to acquire bone marrow failure diseases.
- Minority-focused programs to make information on treatment options and clinical trials available to minority communities, particularly Hispanic and Asian American communities.
- Agency for Healthcare Research and Quality grants to help improve diagnostic practices and quality of care for patients with bone marrow failure diseases.
If you live in the U.S., you can help by contacting your representative. Go to the Grassroots Action Center
and click the Take Action
button. Personalize the sample message to tell your story and why you want your Representative to support HR 640.