What's At Stake?
Contact Your Representative to Support the Bone Marrow Failure Disease Research and Treatment Act
Between 20,000 and 30,000 Americans are diagnosed with acquired bone marrow failure diseases every year. These painful and often fatal diseases, which occur when the body's bone marrow stops working properly, include myelodysplastic syndromes (MDS), aplastic anemia, and acute myeloid leukemia (which can progress from MDS). Bone marrow failure diseases exact a significant toll on society, yet there is still much to be learned about what causes these disorders and how to treat them.
The Bone Marrow Failure Disease Research and Treatment Act (H.R. 1230), which was introduced by Representative Doris Matsui on February 26, 2009, increases the federal government's commitment to researching and treating acquired bone marrow failure diseases. Specifically, the legislation directs the Health and Human Services Department to develop a comprehensive strategy to combat these diseases through a number of activities, including:
- Establishing 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;
- Conducting pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors cause people to acquire bone marrow failure diseases;
- Establishing minority-focused programs to make information on treatment options and clinical trials available to minority communities, particularly Hispanic and Asian American communities; and
- Authorizing Agency for Healthcare Research and Quality (AHRQ) grants to help improve diagnostic practices and quality of care for patients with bone marrow failure diseases.
In total, the legislation authorizes $8 million annually for fiscal years 2010 through 2014.