Advancing treatment and research pertaining to sickle cell disease

Part D of title III of the Public Health Service Act (42 U.S.C. 254b et seq.) is amended by adding at the end the following:

XIII

Advancing treatment and research pertaining to sickle cell disease

340J.

Scholarship and loan repayment program

(a)

In general

To advance learning regarding sickle cell disease and to enhance the supply of physicians to treat such disease, especially with respect to adult populations, the Secretary, acting through the Administrator of the Health Resources and Services Administration, shall carry out a program consisting of entering into contracts with individuals under which—(1)the Secretary awards a scholarship under subsection (b) or agrees to make loan repayments under subsection (c) with respect to each individual; and(2)the individual agrees to serve for a period (in this section referred to as the period of obligated service) as a physician engaged in—(A)sickle cell disease research; or(B)service in a public or private setting that is primarily focused on treatment and education related to sickle cell disease in a health care facility, clinic, rural health clinic, mobile medical asset, or other facility as determined by the Secretary.(b)

Scholarships

(1)

Eligibility

To be eligible to participate in the scholarship program under this section, an individual shall—(A)be accepted for enrollment, or be enrolled, as a full-time student in an accredited (as determined by the Secretary) educational institution in a State and in a course of study or program offered by such institution and approved by the Secretary, leading to a degree in medicine or osteopathic medicine;(B)submit an application to participate in the scholarship program; and(C)sign and submit to the Secretary, at the time of submittal of such application, a written contract (described in paragraph (2)) to accept payment of a scholarship and to serve (in accordance with this section) for the applicable period of obligated service.(2)

Written contract

The written contract under this subsection between the Secretary and an individual shall contain—(A)an agreement that—(i)subject to paragraph (1), the Secretary agrees to provide the individual with a scholarship in each such school year or years for a period of years (not to exceed four school years) determined by the individual, during which period the individual is pursuing a course of study described in paragraph (1)(A); and(ii)subject to paragraph (1), the individual agrees to—(I)accept provision of such a scholarship to the individual;(II)maintain enrollment in a course of study described in paragraph (1)(A) until the individual completes the course of study;(III)maintain an acceptable level of academic standing;(IV)complete a residency in a specialty that the Secretary determines is consistent with pursuit of a fellowship in hematology;(V)complete a fellowship in the specialty of hematology; and(VI)serve for a time period equal to one year for each school year for which the individual was provided a scholarship under this section;(B)a provision that any financial obligation of the United States arising out of the contract and any obligation of the individual which is conditioned thereon, is contingent upon funds being appropriated for scholarships under this section;(C)a statement of the damages to which the United States is entitled if the individual should breach the contract; and(D)such other statements of the rights and liabilities of the Secretary and of the individual as the Secretary determines appropriate, not inconsistent with the provisions of this section.(c)

Loan repayments

(1)

Eligibility

To be eligible to participate in the loan repayment program under this section, an individual shall—(A)have a degree in medicine or osteopathic medicine; be enrolled in an approved graduate training program in medicine or osteopathic medicine; or be enrolled as a full-time student in an accredited (as determined by the Secretary) educational institution in a State, and in the final year of a course of study offered by such institution and approved by the Secretary, leading to a degree in medicine or osteopathic medicine;(B)submit an application to participate in the loan repayment program; and(C)sign and submit to the Secretary, at the time of submittal of such application, a written contract (described in paragraph (2)) to accept payment by the Secretary of the educational loans of the individual in consideration of the individual serving for a period of obligated service.(2)

Written contract

The written contract under this subsection between the Secretary and an individual shall contain—(A)an agreement that—(i)subject to paragraph (1), the Secretary agrees to pay on behalf of the individual the principal, interest, and related expenses on government and commercial loans received by the individual regarding the undergraduate or graduate education of the individual (or both), which loans were made for—(I)tuition expenses;(II)all other reasonable educational expenses, including fees, books, and laboratory expenses, incurred by the individual; or(III)reasonable living expenses as determined by the Secretary; and(ii)subject to paragraph (1), the individual agrees to—(I)accept loan payments on behalf of the individual;(II)maintain enrollment in a course of study described in paragraph (1)(A) (if applicable) until the individual completes the course of study;(III)maintain an acceptable level of academic standing;(IV)complete a residency in a specialty that the Secretary determines is consistent with pursuit of a fellowship in hematology; and(V)complete a fellowship in hematology;(B)a provision that any financial obligation of the United States arising out of the contract and any obligation of the individual which is conditioned thereon, is contingent upon funds being appropriated for loan repayments under this section;(C)a statement of the damages to which the United States is entitled if the individual should breach the contract; and(D)such other statements of the rights and liabilities of the Secretary and of the individual as the Secretary determines appropriate, not inconsistent with the provisions of this section.(d)

Priority

In awarding contracts under this section for scholarships and loan repayments, the Secretary may prioritize making awards to individuals from disadvantaged backgrounds.(e)

Definition

In this section, the term sickle cell disease research means research into the detection, diagnosis, treatment, or control of sickle cell disease.(f)

Authorization of appropriations

To carry out this section, there is authorized to be appropriated $150,000,000 for each of fiscal years 2024 through 2029.

340J–1.

Community-based grants to engage the sickle cell disease population by designing education and advocacy programs and policies for health and community services

(a)

In general

The Secretary shall carry out a program consisting of awarding grants to eligible entities for the establishment and support of education and advocacy programs that engage the sickle cell disease population, their families, or State and local governments in order to—(1)improve sickle cell disease health literacy, including mental health awareness and educational attainment;(2)disseminate information on health and community services related to sickle cell disease; or(3)improve access to care and treatment decision-making processes related to sickle cell disease.(b)

Applications

To seek a grant under subsection (a), an eligible entity shall submit an application to the Secretary at such time, in such manner, and containing such information and assurances as the Secretary may require.(c)

Consideration

In determining whether to award a grant under this section to an applicant, and the amount of a grant under this section, the Secretary shall consider the need for sickle cell education or services in the area to be served using the grant.(d)

Definition

In this section, the term eligible entity means—(1)a community-based organization or faith-based organization or clinic that provides services to, or engages in, advocacy for individuals with sickle cell disease;(2)a nonprofit organization providing comprehensive care to populations with sickle cell disease, including any such nonprofit organization that is a faith-based organization or community-based organization; or(3)a Federally qualified health center (as defined in section 1861(aa) of the Social Security Act) or nonprofit organization engaged in providing sickle cell disease education, information, or treatment services.(e)

Authorization of appropriations

To carry out this section, there is authorized to be appropriated $50,000,000 for each of fiscal years 2024 through 2029.

340J–2.

Grants for sickle cell disease pediatric to adult transitions of care

(a)

In general

The Secretary shall carry out a program of awarding grants to eligible entities for the establishment and support of programs—(1)that—(A)provide transition support through a dedicated transition coordinator and management of care for sickle cell disease patients between the ages of 18 and 29 who are aging out of pediatric care and receiving adult care for sickle cell disease;(B)assist sickle cell patients in identifying and maintaining adult primary care providers and adult specialists for sickle cell disease compatible with the patient’s health insurance; and(C)provide support services, including mental health services, for the management of the patient’s treatments and medical appointments throughout the transition to adult care; and(2)which, in the case of an eligible entity that is a hospital or an institute of higher education, may include providing training to adult sickle cell disease care specialists on the medical needs of young sickle cell disease patients, through—(A)1- to 2-year long fellowships for any individual that has completed a residency in medicine, combined internal medicine and pediatrics, or family medicine; or(B)short-term programs and workshops.(b)

Eligible entities

To be eligible to receive a grant under this section, an entity shall—(1)be a nonprofit organization providing comprehensive care to populations with sickle cell disease, including a hospital or an institute of higher education, and including any such nonprofit organization that is a faith-based organization or community-based organization; and(2)submit an application to the Secretary at such time, in such manner, and containing such information and assurances as the Secretary may require.(c)

Consideration

In determining whether to award a grant under this section to an eligible entity, and the amount of a grant under this section, the Secretary shall consider the size of the population the eligible entity intends to serve.(d)

Reports

(1)

Reporting by eligible entities

Eligible entities receiving a grant under this section shall submit, during the grant period, an annual report to the Secretary. Each such report shall—(A)use an established and recognized registry on measuring quality metrics specified by the Secretary; and(B)include—(i)a description of the activities carried out using the grant funds;(ii)a summary of the health outcomes for sickle cell patients benefitting from the transition coordination and management program supported by the grant; and(iii)the number of specialists trained and fellowships funded under the grant, as described in subsection (a)(2), as applicable.(2)

Reporting by the Secretary

Not later than 2 years after the date of enactment of the Sickle Cell Care Expansion Act of 2023, and annually thereafter, the Secretary shall submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report on activities carried out by eligible entities under this section, based on the reports submitted to the Secretary under paragraph (1).(e)

Authorization of appropriations

To carry out this section, there is authorized to be appropriated $70,000,000 for each of fiscal years 2024 through 2029.