Political Advocacy

Congressionally Directed Medical Research Program (CDMRP)

Advocacy Impacts Funding

AA&MDSIF’s leadership involvement in a recently initiated research program run by the U.S. Department of Defense (DoD) demonstrated a complete circle of support throughout the process.

Why is the DoD funding bone marrow failure disease research?

In 1992, grassroots advocacy organizations lobbied Congress to expand funding for breast cancer research in ways that were different from those used by traditional medical research entities like National Institutes of Health (NIH). In response, Congress allocated specific funds for this type of research in the DoD budget because the Department had a history of performing medical research studies and its administrative structure was designed for flexibility and quick response. this funding is administered by the DoD Congressionally Directed Medical Research Program (CDMRP), and the specific disease areas chosen for the research are the result of advocacy by organizations and individual constituents.

Since 2007, AA&MDSIF, its patients, families and friends have been reaching out to members of Congress to include funding for bone marrow failure disease research as part of the DoD bill. As a result of this effort, led by Congresswoman Doris O. Matsui (D-CA), the 2008 DoD appropriation included $1 million for bone marrow failure research. Since fiscal year 2008, Congress has appropriated a total of $16.95 million (including $3.2 million in fiscal year 2012) to this program.

Learn more about CDMRP.

H.R. 640 - The Bone Marrow Failure Disease Research and Treatment Act

Cosponsors of H.R. 640               Text of H.R. 640                Dear Colleague Letter

On February 10, Representative Doris Matsui (D-CA) introduced the Bone Marrow Failure Disease Research and Treatment Act.  The bill, which is very similar to the legislation introduced by Representative Matsui in 2009, has been designated H.R. 640 in the 112th Congress (2011-2012).

Go to the Action Center

We need your help today. Go to the AA&MDSIF Action Center to send your Representative an email urging them to sign on as a cosponsor of H.R. 640.

H.R. 640 increases the federal government’s commitment to researching and treating aplastic anemia, MDS, PNH, and other acquired bone marrow failure diseases. The legislation directs the Department of Health and Human Services (HHS) to combat these diseases through a comprehensive 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.

Last year, the U.S. House of Representatives approved a similar but modified version of the bill. Unfortunately, the Senate did not act on this legislation prior to its adjournment last December. However, Representative Matsui remains committed to moving this important legislation through Congress this year toward ultimate enactment into law!

So now, we need your help. Go to the Action Center to send your Representative an email urging their cosponsorship of the legislation.