H.R. 1230 – Reading Mode

IIB

111th CONGRESS

2d Session

H. R. 1230

IN THE SENATE OF THE UNITED STATES

November 15, 2010

Received; read twice and referred to the Committee on Health, Education, Labor, and Pensions

AN ACT

To amend the Public Health Service Act to provide for research on acquired bone marrow failure diseases, minority-focused programs on such diseases, and the development of best practices for diagnosis of and care for individuals with such diseases.

Short title

This Act may be cited as the Acquired Bone Marrow Failure Disease Research and Treatment Act of 2010.

Acquired Bone Marrow Failure Disease Research

Part B of title III of the Public Health Service Act (42 U.S.C. 243 et seq.) is amended by inserting after section 317T the following:

317U.

Acquired Bone Marrow Failure Disease Research

(a)

In general

The Secretary may conduct research on acquired bone marrow failure diseases. Such research may address factors including—

(1)

trends in the characteristics of individuals who are diagnosed with acquired bone marrow failure diseases, including age, race and ethnicity, general geographic location, sex, family history, and any other characteristics determined appropriate by the Secretary;

(2)

the genetic and environmental factors, including exposure to toxins, that may be associated with developing acquired bone marrow failure diseases;

(3)

approaches to treating acquired bone marrow failure diseases;

(4)

outcomes for individuals treated for acquired bone marrow failure diseases, including outcomes for recipients of stem cell therapeutic products; and

(5)

any other factors pertaining to acquired bone marrow failure diseases determined appropriate by the Secretary.

(b)

Collaboration with the Radiation Injury Treatment Network

In carrying out subsection (a), the Secretary may collaborate with the Radiation Injury Treatment Network of the C.W. Bill Young Cell Transplantation Program established pursuant to section 379 to—

(1)

augment data for the studies under such subsection;

(2)

access technical assistance that may be provided by the Radiation Injury Treatment Network; or

(3)

perform joint research projects.

(c)

Definition

In this section, the term acquired bone marrow failure disease means—

(1)

myelodysplastic syndromes (MDS);

(2)

aplastic anemia;

(3)

paroxysmal nocturnal hemoglobinuria (PNH);

(4)

pure red cell aplasia;

(5)

acute myeloid leukemia that has progressed from myelodysplastic syndromes;

(6)

large granular lymphocytic leukemia; or

(7)

any other bone marrow failure disease specified by the Secretary, to the extent such disease is acquired and not inherited, as determined by the Secretary.

Minority-focused programs on acquired bone marrow failure diseases

Title XVII of the Public Health Service Act (42 U.S.C. 300u et seq.) is amended by inserting after section 1707A the following:

1707B.

Minority-focused programs on acquired bone marrow failure diseases

(a)

Information and referral services

(1)

In general

The Secretary may establish and coordinate outreach and informational programs targeted to minority populations, including Hispanic, Asian-American, Native Hawaiian, and Pacific Islander populations, that are affected by acquired bone marrow failure diseases.

(2)

Program activities

Programs under subsection (a) may carry out activities that include—

(A)

making information about treatment options and clinical trials for acquired bone marrow failure diseases publicly available; and

(B)

providing referral services for treatment options and clinical trials.

(b)

Definition

In this section, the term acquired bone marrow failure disease has the meaning given such term in section 317U(c).

Best practices for diagnosis of and care for individuals with acquired bone marrow failure diseases

Part B of title III of the Public Health Service Act (42 U.S.C. 243 et seq.), as amended by section 2, is further amended by inserting after section 317U the following:

317V.

Best practices for diagnosis of and care for individuals with acquired bone marrow failure diseases

(a)

Grants

The Secretary, acting through the Director of the Agency for Healthcare Research and Quality, may award grants to researchers to study best practices with respect to diagnosing acquired bone marrow failure diseases and providing care to individuals with such diseases.

(b)

Definition

In this section, the term acquired bone marrow failure disease has the meaning given such term in section 317U(c).

Passed the House of Representatives September 30 (legislative day September 29), 2010.

Lorraine C. Miller,

Clerk