[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[S. 3361 Introduced in Senate (IS)]

<DOC>






114th CONGRESS
  2d Session
                                S. 3361

  To amend the Public Health Service Act to establish an interagency 
    coordinating committee on pulmonary hypertension, and for other 
                               purposes.


_______________________________________________________________________


                   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.

    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 ``Pulmonary Hypertension Research and 
Diagnosis Act of 2016''.

SEC. 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:

``SEC. 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.''.

SEC. 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.
                                 <all>