Acquired bone marrow failure diseases

(a) National acquired bone marrow failure disease registry Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) is amended by inserting after section 317W, as added by section 1009, the following: 317X. 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 shall— (A) identify the incidence and prevalence of acquired bone marrow failure diseases in the United States; (B) 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) 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 Prevention. (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; or (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; (2) aplastic anemia; (3) paroxysmal nocturnal hemoglobinuria; (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 2027 through 2031.. (b) Pilot studies through the agency for toxic substances and disease registry (1) Pilot studies The Secretary of Health and Human Services, acting through the Director 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. (2) Collaboration with the radiation injury treatment network In carrying out the directives of this section, the Secretary of Health and Human Services 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. 274k) to— (A) augment data for the pilot studies authorized by this section; (B) access technical assistance that may be provided by the Radiation Injury Treatment Network; or (C) perform joint research projects. (3) Authorization of appropriations There is authorized to be appropriated to carry out this subsection $1,000,000 for each of fiscal years 2027 through 2031. (c) 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 disease (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 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— (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. (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 subsection 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 317X(d). (e) Authorization of appropriations There is authorized to be appropriated to carry out this section $2,000,000 for each of fiscal years 2027 through 2031.. (d) Diagnosis and quality of care for acquired bone marrow failure diseases (1) 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. (2) Authorization of appropriations There is authorized to be appropriated to carry out this subsection $2,000,000 for each of fiscal years 2027 through 2031. (e) Definition In this section, the term acquired bone marrow failure disease has the meaning given such term in section 317X(d) of the Public Health Service Act, as added by subsection (a).