On September 30, 2010, the U.S. House of Representatives approved a modified version of HR 1230, now known as the Acquired Bone Marrow Failure Disease Research and Treatment Act. The bill was first introduced
in 2008 and reintroduced
The legislation would support increased research on aplastic anemia, MDS, and PNH, including what genetic and environmental factors may be associated with the conditions and best practices for the diagnosis and treatment of these diseases. It would also authorize coordinated outreach and informational programs targeted to minority populations affected by these diseases, including information on treatment options and clinical trials.
In order to secure bipartisan support for HR 1230, the committee amended the bill to give the Secretary of Health and Human Services (HHS) more discretion on how to implement the goals of the legislation. For example, the bill no longer includes language requiring the establishment of a bone marrow failure disease registry, and also no longer includes specific authorization amounts for specific activities. Changes like these are often required to move legislation forward, particularly in this difficult fiscal environment. However, Representative Doris Matsui (D-CA), who is the author and primary sponsor of the bill, will work with HHS to ensure proper implementation of this legislation.
The House approval of HR 1230 was a direct result of the strong leadership of Representative Matsui and the persistent advocacy efforts of patients and families
across the nation. The focus will now move to the U.S. Senate during the remaining months of this session of Congress.
To contact your own senators about HR 1230 visit the AA&MDSIF Grassroots Action Center
. You can also follow all the action on this legislation by visiting the HR 1230 information page
on the AA&MDSIF site.