While a link between bone marrow failure diseases and benzene exposure has been well established, there is a great need for more research into causes and treatments for these potentially fatal disorders.
Bone marrow failure diseases, like aplastic anemia, myelodysplastic syndromes, and acute myeloid leukemia (AML), sicken between 20,000 and 30,000 Americans each year.
On February 26, 2009 Representative Dorris O Matusi (D-CA) introduced the Bone Marrow Failure Disease Research and Treatment Act of 2009. The legislation would pool the resources of several federal agencies in order to increase understanding and treatments for the disorders.
The following summary of the bill is courtesy of the Aplastic Anemia & MDS (myelodysplastic syndromes) International Foundation, Inc. (AA&MDSIF).
The legislation directs the Health and Human Services Department to develop a comprehensive
strategy to combat these diseases, which include:
• 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
• Minority-focused programs to make information on treatment options and clinical trials
available to minority communities, particularly Hispanic and Asian American
• 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.
For information on how you can take action to help pass this legislation, check out AA&MDSIF’s Grass Roots Action page by clicking here.