[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1230 Introduced in House (IH)]

111th CONGRESS
  1st Session
                                H. R. 1230

To amend the Public Health Service Act to provide for the establishment 
    of a National Acquired Bone Marrow Failure Disease Registry, to 
 authorize research on acquired bone marrow failure diseases, and for 
                            other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 26, 2009

    Ms. Matsui (for herself, Mr. Bishop of Georgia, Mr. Murtha, Mr. 
McDermott, Mrs. Emerson, Mr. Gene Green of Texas, Mr. Abercrombie, Ms. 
Schwartz, Mr. Conyers, Ms. Hirono, Ms. Bordallo, Mr. Lewis of Georgia, 
  Mr. Frank of Massachusetts, Mr. Wolf, Mr. King of New York, Mr. Van 
     Hollen, Mr. McGovern, Ms. DeGette, Mr. Arcuri, and Ms. Eshoo) 
 introduced the following bill; which was referred to the Committee on 
                          Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to provide for the establishment 
    of a National Acquired Bone Marrow Failure Disease Registry, to 
 authorize research on acquired bone marrow failure diseases, and for 
                            other purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Bone Marrow Failure Disease Research 
and Treatment Act of 2009''.

SEC. 2. FINDINGS.

    The Congress finds the following:
            (1) 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.
            (2) Acquired bone marrow failure diseases have a 
        debilitating and often fatal impact on those diagnosed with 
        these disease.
            (3) While some treatments for acquired bone marrow failure 
        diseases can prolong and improve the quality of patients' 
        lives, there is no single cure for these diseases.
            (4) The prevalence of acquired bone marrow failure diseases 
        in the United States will continue to grow as the general 
        public ages.
            (5) Evidence exists suggesting that acquired bone marrow 
        failure diseases occur more often in minority populations, 
        particularly in Asian-American and Hispanic/Latino populations.
            (6) The National Heart, Lung, and Blood Institute and the 
        National Cancer Institute have conducted important research 
        into the causes of and treatments for acquired bone marrow 
        failure diseases.
            (7) The National Marrow Donor Program Registry has made 
        significant contributions to the fight against bone marrow 
        failure diseases by connecting millions of potential marrow 
        donors with individuals and families suffering from these 
        conditions.
            (8) Despite these advances, a more comprehensive Federal 
        strategic effort among numerous Federal agencies is needed to 
        discover a cure for acquired bone marrow failure disorders.
            (9) Greater Federal surveillance of acquired bone marrow 
        failure diseases is needed to gain a better understanding of 
        the causes of acquired bone marrow failure diseases.
            (10) The Federal Government should increase its research 
        support for and engage with public and private organizations in 
        developing a comprehensive approach to combat and cure acquired 
        bone marrow failure diseases.

SEC. 3. NATIONAL ACQUIRED BONE MARROW FAILURE DISEASE REGISTRY.

    Part B of the Public Health Service Act (42 U.S.C. 311 et seq.) is 
amended by inserting after section 317T the following:

``SEC. 317U. NATIONAL ACQUIRED BONE MARROW FAILURE DISEASE REGISTRY.

    ``(a) Establishment of Registry.--
            ``(1) In general.--Not later than 6 months after the date 
        of the enactment of this section, the Secretary, acting through 
        the Director of the Centers for Disease Control and Prevention, 
        shall--
                    ``(A) develop a system to collect data on acquired 
                bone marrow failure diseases; and
                    ``(B) establish and maintain a national and 
                publicly available registry, to be known as the 
                National Acquired Bone Marrow Failure Disease Registry, 
                in accordance with paragraph (3).
            ``(2) Recommendations of advisory committee.--In carrying 
        out this subsection, the Secretary shall take into 
        consideration the recommendations of the Advisory Committee on 
        Acquired Bone Marrow Failure Diseases established under 
        subsection (b).
            ``(3) Purposes of registry.--The National Acquired Bone 
        Marrow Failure Disease Registry--
                    ``(A) shall identify the incidence and prevalence 
                of acquired bone marrow failure diseases in the United 
                States;
                    ``(B) shall be used to collect and store data on 
                acquired bone marrow failure diseases, including data 
                concerning--
                            ``(i) the age, race or ethnicity, general 
                        geographic location, sex, and family history of 
                        individuals who are diagnosed with acquired 
                        bone marrow failure diseases, and any other 
                        characteristics of such individuals determined 
                        appropriate by the Secretary;
                            ``(ii) the genetic and environmental 
                        factors that may be associated with developing 
                        acquired bone marrow failure diseases;
                            ``(iii) treatment approaches for dealing 
                        with acquired bone marrow failure diseases;
                            ``(iv) outcomes for individuals treated for 
                        acquired bone marrow failure diseases, 
                        including outcomes for recipients of stem cell 
                        therapeutic products as contained in the 
                        database established pursuant to section 379A; 
                        and
                            ``(v) any other factors pertaining to 
                        acquired bone marrow failure diseases 
                        determined appropriate by the Secretary; and
                    ``(C) shall be made available--
                            ``(i) to the general public; and
                            ``(ii) to researchers to facilitate further 
                        research into the causes of, and treatments 
                        for, acquired bone marrow failure diseases in 
                        accordance with standard practices of the 
                        Centers for Disease Control and Preventions.
    ``(b) Advisory Committee.--
            ``(1) Establishment.--Not later than 6 months after the 
        date of the enactment of this section, the Secretary, acting 
        through the Director of the Centers for Disease Control and 
        Prevention, shall establish an advisory committee, to be known 
        as the Advisory Committee on Acquired Bone Marrow Failure 
        Diseases.
            ``(2) Members.--The members of the Advisory Committee on 
        Acquired Bone Marrow Failure Diseases shall be appointed by the 
        Secretary, acting through the Director of the Centers for 
        Disease Control and Prevention, and shall include at least one 
        representative from each of the following:
                    ``(A) A national patient advocacy organization with 
                experience advocating on behalf of patients suffering 
                from acquired bone marrow failure diseases.
                    ``(B) The National Institutes of Health, including 
                at least one representative from each of--
                            ``(i) the National Cancer Institute;
                            ``(ii) the National Heart, Lung, and Blood 
                        Institute; and
                            ``(iii) the Office of Rare Diseases.
                    ``(C) The Centers for Disease Control and 
                Prevention.
                    ``(D) Clinicians with experience in--
                            ``(i) diagnosing or treating acquired bone 
                        marrow failure diseases; and
                            ``(ii) medical data registries.
                    ``(E) Epidemiologists who have experience with data 
                registries.
                    ``(F) Publicly or privately funded researchers who 
                have experience researching acquired bone marrow 
                failure diseases.
                    ``(G) The entity operating the C.W. Bill Young Cell 
                Transplantation Program established pursuant to section 
                379 and the entity operating the C.W. Bill Young Cell 
                Transplantation Program Outcomes Database.
            ``(3) Responsibilities.--The Advisory Committee on Acquired 
        Bone Marrow Failure Diseases shall provide recommendations to 
        the Secretary on the establishment and maintenance of the 
        National Acquired Bone Marrow Failure Disease Registry, 
        including recommendations on the collection, maintenance, and 
        dissemination of data.
            ``(4) Public availability.--The Secretary shall make the 
        recommendations of the Advisory Committee on Acquired Bone 
        Marrow Failure Disease publicly available.
    ``(c) Grants.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, may award grants to, and 
enter into contracts and cooperative agreements with, public or private 
nonprofit entities for the management of, as well as the collection, 
analysis, and reporting of data to be included in, the National 
Acquired Bone Marrow Failure Disease Registry.
    ``(d) 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; or
            ``(6) large granular lymphocytic leukemia.
    ``(e) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $3,000,000 for each of fiscal 
years 2010 through 2014.''.

SEC. 4. PILOT STUDIES THROUGH THE AGENCY FOR TOXIC SUBSTANCES AND 
              DISEASE REGISTRY.

    (a) Pilot Studies.--The Secretary of Health and Human Services, 
acting through the Administrator of the Agency for Toxic Substances and 
Disease Registry, shall conduct pilot studies to determine which 
environmental factors, including exposure to toxins, may cause acquired 
bone marrow failure diseases.
    (b) Collaboration With the Radiation Injury Treatment Network.--In 
carrying out the directives of this section, the Secretary may 
collaborate with the Radiation Injury Treatment Network of the C.W. 
Bill Young Cell Transplantation Program established pursuant to section 
379 of the Public Health Service Act (42 U.S.C. 274j) to--
            (1) augment data for the pilot studies authorized by this 
        section;
            (2) access technical assistance that may be provided by the 
        Radiation Injury Treatment Network; or
            (3) perform joint research projects.
    (c) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $1,000,000 for each of fiscal 
years 2010 through 2014.

SEC. 5. 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 1707 the following:

  ``minority-focused programs on acquired bone marrow failure diseases

    ``Sec. 1707A.  (a) Information and Referral Services.--
            ``(1) In general.--Not later than 6 months after the date 
        of the enactment of this section, the Secretary, acting through 
        the Deputy Assistant Secretary for Minority Health, shall 
        establish and coordinate outreach and informational programs 
        targeted to minority populations affected by acquired bone 
        marrow failure diseases.
            ``(2) Program requirements.--Minority-focused outreach and 
        informational programs authorized by this section--
                    ``(A) shall make information about treatment 
                options and clinical trials for acquired bone marrow 
                failure diseases publicly available, and
                    ``(B) shall provide referral services for treatment 
                options and clinical trials,
        at the national minority health resource center supported under 
        section 1707(b)(8) (including by means of the center's website, 
        through appropriate locations such as the center's knowledge 
        center, and through appropriate programs such as the center's 
        resource persons network) and through minority health 
        consultants located at each Department of Health and Human 
        Services regional office.
    ``(b) Hispanic and Asian-American and Pacific Islander Outreach.--
            ``(1) In general.--The Secretary, acting through the Deputy 
        Assistant Secretary for Minority Health, shall undertake a 
        coordinated outreach effort to connect Hispanic, Asian-
        American, and Pacific Islander communities with comprehensive 
        services focused on treatment of, and information about, 
        acquired bone marrow failure diseases.
            ``(2) Collaboration.--In carrying out this subsection, the 
        Secretary may collaborate with public health agencies, 
        nonprofit organizations, community groups, and online entities 
        to disseminate information about treatment options and clinical 
        trials for acquired bone marrow failure diseases.
    ``(c) Grants and Cooperative Agreements.--
            ``(1) In general.--Not later than 6 months after the date 
        of the enactment of this section, the Secretary, acting through 
        the Deputy Assistant Secretary for Minority Health, shall award 
        grants to, or enter into cooperative agreements with, entities 
        to perform research on acquired bone marrow failure diseases.
            ``(2) Requirement.--Grants and cooperative agreements 
        authorized by this subsection shall be awarded or entered into 
        on a competitive, peer-reviewed basis.
            ``(3) Scope of research.--Research funded under this 
        section shall examine factors affecting the incidence of 
        acquired bone marrow failure diseases in minority populations.
    ``(d) Definition.--In this section, the term `acquired bone marrow 
failure disease' has the meaning given to such term in section 317U(d).
    ``(e) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $2,000,000 for each of fiscal 
years 2010 through 2014.''.

SEC. 6. DIAGNOSIS AND QUALITY OF CARE FOR ACQUIRED BONE MARROW FAILURE 
              DISEASES.

    (a) Grants.--The Secretary of Health and Human Services, acting 
through the Director of the Agency for Healthcare Research and Quality, 
shall award grants to entities to improve diagnostic practices and 
quality of care with respect to patients with acquired bone marrow 
failure diseases.
    (b) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $2,000,000 for each of fiscal 
years 2010 through 2014.

SEC. 7. DEFINITION.

    In this Act, 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 progressed from 
        myelodysplastic syndromes; or
            (6) large granular lymphocytic leukemia.
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