2009-03-12
On February 26, 2009, Representative Doris Matsui
(D-CA) introduced the Bone Marrow Failure Disease Research and
Treatment Act of 2009 (HR 1230).
On March 4, members of the ASH Government Affairs Committee met with
Representative Matsui’s staff to discuss the bill and to discuss
additional opportunities for federal support of MDS treatment and
research.
The bill, which currently has 19 co-sponsors, increases the federal
government’s commitment to treating and researching acquired bone
marrow failure diseases such as myelodysplastic syndromes, aplastic
anemia, and acute myeloid leukemia. 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
- Authorizing Agency
for Healthcare Research and Quality 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.
ASH will continue to encourage congressional support for the Bone
Marrow Failure Disease Research and Treatment Act and keep members
updated about congressional activity on this legislation.
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