II 114th CONGRESS 2d Session S. 3361 IN THE SENATE OF THE UNITED STATES September 20, 2016 Mr. Casey (for himself and Mr. King ) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To amend the Public Health Service Act to establish an interagency coordinating committee on pulmonary hypertension, and for other purposes.

1. Short title This Act may be cited as the Pulmonary Hypertension Research and Diagnosis Act of 2016 . 2. Interagency pulmonary hypertension coordinating committee established Part P of title III of the Public Health Service Act ( 42 U.S.C. 280g et seq. ) is amended by adding at the end the following new section: 399V–7. Interagency Pulmonary Hypertension Coordinating Committee (a) Committee established The Secretary shall establish a committee, to be known as the Interagency Pulmonary Hypertension Coordinating Committee (in this section referred to as the Committee ), to coordinate all efforts within the Department of Health and Human Services concerning pulmonary hypertension. (b) Responsibilities The Committee shall— (1) develop and annually update a summary of the advances made in research on, and treatment and diagnosis of, pulmonary hypertension; (2) develop and annually update a summary of the advances made in access to care for individuals with a diagnosis of pulmonary hypertension; (3) monitor pulmonary hypertension research, services, and support activities across the Federal Government, including coordination of Federal activities and programs with respect to pulmonary hypertension; (4) develop and annually update a comprehensive strategic plan under subsection (c) to improve health outcomes for individuals with a diagnosis of pulmonary hypertension; and (5) develop and annually update the progress made in implementing such comprehensive strategic plan. (c) Strategy Not later than one year after the date of the enactment of the Pulmonary Hypertension Research and Diagnosis Act of 2016 and annually thereafter, the Committee shall submit to Congress and the Secretary a strategy to improve health outcomes for individuals with a diagnosis of pulmonary hypertension. Such strategy shall include the following: (1) Recommendations to advance research on pulmonary hypertension. (2) Recommendations to improve the transplantation criteria and process concerning lung and heart-lung transplants for individuals with a diagnosis of pulmonary hypertension. (3) Recommendations to improve public awareness and recognition of pulmonary hypertension. (4) Recommendations to improve health care delivery for individuals with a diagnosis of pulmonary hypertension. (5) Recommendations to improve the early and accurate diagnosis of pulmonary hypertension. (6) Recommendations to systematically advance the full spectrum of biomedical research on pulmonary hypertension. (d) Membership (1) In general The Committee shall be composed of— (A) the Director of the Agency for Healthcare Research and Quality; (B) the Assistant Secretary of the Administration for Children and Families; (C) the Director of the Centers for Disease Control and Prevention; (D) the Administrator of the Centers for Medicare & Medicaid Services; (E) the Secretary of Defense; (F) the Commissioner of Food and Drugs; (G) the Administrator of the Health Resources and Services Administration; (H) the Director of the National Institutes of Health; and (I) the non-Federal members appointed under paragraph (2). (2) Non-Federal members Not fewer than 6 members of the Committee or one-third of the total membership of the Committee, whichever is greater, shall be composed of non-Federal members to be appointed by the Secretary, of which— (A) at least 2 shall be individuals with a diagnosis of pulmonary hypertension; (B) at least 1 shall be the parent or guardian of an individual with a diagnosis of pulmonary hypertension; (C) at least 1 shall be a representative of a pharmaceutical company that manufactures a drug or device for detecting, preventing, or treating pulmonary hypertension; and (D) at least 1 shall be a representative of a leading research, advocacy, or support organization primarily serving individuals with a diagnosis of pulmonary hypertension. (e) Meetings The Committee shall meet not fewer than 2 times each year. All meetings shall be open to the public. (f) Termination date The Committee shall terminate on the date that is 5 years after the date of the enactment of the Pulmonary Hypertension Research and Diagnosis Act of 2016 . . 3. Report to Congress (a) Report required Not later than 2 years after the date of the enactment of this Act, the Secretary of Health and Human Services, in coordination with the Interagency Pulmonary Hypertension Coordinating Committee, shall prepare and 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 progress report on activities related to improving health outcomes for individuals with a diagnosis of pulmonary hypertension. (b) Contents of report The report submitted under subsection (a) shall contain— (1) information on the incidence of pulmonary hypertension including such incidence since the date of the enactment of this Act; (2) information on the prevalence of pulmonary hypertension in children and adults; (3) information on the average time between the initial screening and the accurate diagnosis of pulmonary hypertension; (4) information on the average stage of pulmonary hypertension when appropriate intervention begins; (5) information on the effectiveness and outcomes of interventions for individuals with a diagnosis of pulmonary hypertension, including— (A) mortality rate; and (B) the frequency of drastic treatment options such as lung and heart-lung transplants; (6) information on new developments in research activities; (7) information on innovative treatment options and diagnostic tools; and (8) information on services and supports available to individuals with a diagnosis of pulmonary hypertension. (c) Publication The Secretary of Health and Human Services shall make the report submitted under subsection (a) available on the public Internet Web site of the Department of Health and Human Services.