H.R. 1230: Bone Marrow Failure Disease Research and Treatment Act

H.R. 1230

Bone Marrow Failure Disease Research and Treatment Act

Sponsor
Rep. Doris O. Matsui

Date
September 29, 2010 (111th Congress, 2nd Session)

Staff Contact
Communications

Floor Situation

H.R. 1230 is expected to be considered on the House floor on Wednesday, September 29, 2010, under a suspension of the rules, requiring a two-thirds majority vote to pass.  Rep. Matsui (D-CA) introduced H.R. 1230 on February 26, 2009, and it was referred to the Committee on Energy and Commerce. 

Bill Summary

H.R. 1230 would require the secretary of Health and Human Services to do the following: (1) Develop a system to collect data on acquired bone marrow failure diseases; (2) Establish the National Acquired Bone Marrow Failure Disease Registry; and (3) Establish the Advisory Committee on Acquired Bone Marrow Failure Diseases to provide recommendations to the secretary on the registry.

 

The bill would allow the Secretary to award grants to, and enter to contracts and cooperative agreements with, public or private nonprofit entities for the management of the registry.

 

The bill would authorize the appropriation of $3,000,000 for each of fiscal years 2010 through 2014.

 

Also, the bill would require the Secretary to conduct pilot studies to determine which environmental factors may cause acquired bone marrow failure diseases.  Furthermore, the bill would authorize the appropriation of $3,000,000 for each of fiscal years 2010 through 2014 for these pilot studies.

 

 

In addition, the bill would require the Secretary to do the following: (1) Establish outreach and information programs targeted to minority populations affected by such diseases; (2) Undertake a coordinated outreach effort to connect Hispanic, Asian American, and Pacific Islander communities with comprehensive services focused on treatment of, and information about, such diseases; and (3) Awards grants to, or enter into cooperative agreements with, entities to perform research on such diseases.  The bill would authorize the appropriation of $2,000,000 for each of fiscal years 2010 through 2014 for these programs.

 

Lastly, it would require the Secretary to award grants to entities to improve diagnostic practices and quality of care with respect to patients with such diseases.  The bill would authorize the appropriation of $2,000,000 for each of fiscal years 2010 through 2014 for these programs.

Background

According to the bill’s author, between 20,000 and 30,000 Americans are diagnosed each year with myelodysplastic syndromes, aplastic anemia, paroxysmal nocturnal hemoglobinuria, and other acquired bone marrow failure diseases. 

Cost

Assuming the appropriation of necessary amounts, the Congressional Budget Office estimates H.R. 1230 would cost $26 million over the 2011-2015 period.