S3757-118

1. Short title This Act may be cited as the Congenital Heart Futures Reauthorization Act of 2024.

2. National congenital heart disease research, surveillance, and awareness Section 399V–2 of the Public Health Service Act (42 U.S.C. 280g–13) is amended— by redesignating subsections (f) and (g) as subsections (h) and (i), respectively; by inserting after subsection (e) the following: Not later than 1 year after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2024, the Secretary shall convene a workshop composed of subject matter experts, on adult patients living with congenital heart disease, to— identify research gaps and opportunities related to the lifelong needs of congenital heart disease patients, including long-term health outcomes, quality of life, mental health, and health care utilization; assess the workforce capacity in the United States of health care providers who treat adult patients living with congenital heart disease, and options to address any such shortages in such workforce, which may include strategies to expand fellowship training programs and support regional care centers; and foster collaboration and dissemination of information across Federal agencies, health care providers, researchers, and patient organizations. The workshop described in paragraph (1) shall be led by the Secretary, and shall involve participants that include, as appropriate, stakeholders representing patient organizations, health care professionals, research entities, health insurance providers, accrediting organizations, and relevant Federal agencies, including the Centers for Disease Control and Prevention, the National Institutes of Health, and the Health Resources and Services Administration. Not later than 3 years after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2024, the Secretary shall issue a report to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives on findings and recommendations of the Secretary with respect to strategies to advance research related to the lifelong needs of congenital heart disease patients and address workforce shortages of providers for adult patients living with congenital heart disease, and, as appropriate, progress made by the Secretary to implement such strategies and a plan for implementing such recommendations. in subsection (i), as so redesignated, by striking 2020 through 2024 and inserting 2025 through 2029. (f)Stakeholder workshop(1)In generalNot later than 1 year after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2024, the Secretary shall convene a workshop composed of subject matter experts, on adult patients living with congenital heart disease, to—(A)identify research gaps and opportunities related to the lifelong needs of congenital heart disease patients, including long-term health outcomes, quality of life, mental health, and health care utilization;(B)assess the workforce capacity in the United States of health care providers who treat adult patients living with congenital heart disease, and options to address any such shortages in such workforce, which may include strategies to expand fellowship training programs and support regional care centers; and(C)foster collaboration and dissemination of information across Federal agencies, health care providers, researchers, and patient organizations.(2)CompositionThe workshop described in paragraph (1) shall be led by the Secretary, and shall involve participants that include, as appropriate, stakeholders representing patient organizations, health care professionals, research entities, health insurance providers, accrediting organizations, and relevant Federal agencies, including the Centers for Disease Control and Prevention, the National Institutes of Health, and the Health Resources and Services Administration.(g)ReportNot later than 3 years after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2024, the Secretary shall issue a report to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives on findings and recommendations of the Secretary with respect to strategies to advance research related to the lifelong needs of congenital heart disease patients and address workforce shortages of providers for adult patients living with congenital heart disease, and, as appropriate, progress made by the Secretary to implement such strategies and a plan for implementing such recommendations.; and

1. Short title This Act may be cited as the Congenital Heart Futures Reauthorization Act of 2024.

2. National congenital heart disease research, surveillance, and awareness Section 399V–2 of the Public Health Service Act (42 U.S.C. 280g–13) is amended— by redesignating subsections (f) and (g) as subsections (h) and (i), respectively; by inserting after subsection (e) the following: Not later than 1 year after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2024, the Secretary shall convene a workshop on congenital heart disease, to— identify research gaps and opportunities related to the needs of adults with congenital heart disease, including with respect to long-term health outcomes, quality of life, mental health, and health care utilization; assess the workforce capacity in the United States to treat adults with congenital heart disease, and options to address any shortages in such workforce, which may include strategies related to fellowship training programs; and foster collaboration and dissemination of information related to congenital heart disease among Federal agencies, health care providers, researchers, patient advocates, and other relevant stakeholders. The workshop described in paragraph (1) shall include relevant stakeholders, such as patient advocates, health care providers, researchers, and health insurance issuers, and representatives of relevant Federal agencies, including the Centers for Disease Control and Prevention, the National Institutes of Health, and the Health Resources and Services Administration. Not later than 3 years after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2024, the Secretary shall issue a report to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives on findings and recommendations of the Secretary with respect to strategies to advance research related to the needs of individuals of all ages with congenital heart disease and address workforce shortages of providers for adults with congenital heart disease, and, as appropriate, a plan for implementing such strategies, including any progress to date. in subsection (i), as so redesignated, by striking 2020 through 2024 and inserting 2025 through 2029. (f)Stakeholder workshop(1)In generalNot later than 1 year after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2024, the Secretary shall convene a workshop on congenital heart disease, to—(A)identify research gaps and opportunities related to the needs of adults with congenital heart disease, including with respect to long-term health outcomes, quality of life, mental health, and health care utilization;(B)assess the workforce capacity in the United States to treat adults with congenital heart disease, and options to address any shortages in such workforce, which may include strategies related to fellowship training programs; and(C)foster collaboration and dissemination of information related to congenital heart disease among Federal agencies, health care providers, researchers, patient advocates, and other relevant stakeholders.(2)CompositionThe workshop described in paragraph (1) shall include relevant stakeholders, such as patient advocates, health care providers, researchers, and health insurance issuers, and representatives of relevant Federal agencies, including the Centers for Disease Control and Prevention, the National Institutes of Health, and the Health Resources and Services Administration.(g)ReportNot later than 3 years after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2024, the Secretary shall issue a report to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives on findings and recommendations of the Secretary with respect to strategies to advance research related to the needs of individuals of all ages with congenital heart disease and address workforce shortages of providers for adults with congenital heart disease, and, as appropriate, a plan for implementing such strategies, including any progress to date.; and