Pulmonary Hypertension Research and Diagnosis Act of 2013

Summary: Pulmonary Hypertension Research and Diagnosis Act of 2013 - Directs the Secretary of Health and Human Services (HHS) to establish an Interagency Pulmonary Hypertension Coordinating Committee to make recommendations on, and coordinate, all efforts within HHS concerning pulmonary hypertension.  Requires the Committee to: (1) develop and update annually a summary of pulmonary hypertension advances in medical research and treatment development and improvement, early and accurate diagnosis, appropriate and timely intervention, transplantation, and access to care and therapies for patients; (2) monitor federal activities respecting pulmonary hypertension; (3) make recommendations regarding appropriate changes to such activities as well as stakeholder participation in decisions relating to pulmonary hypertension; and (4) develop and update annually a comprehensive strategic plan to cooperatively improve health outcomes for pulmonary hypertension patients.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Pulmonary Hypertension Research and 
Diagnosis Act of 2013''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) Pulmonary hypertension is a serious, debilitating, and 
        often fatal progressive condition where the blood pressure in 
        the lungs rises to dangerously high levels. In pulmonary 
        hypertension patients, the walls of the arteries that take 
        blood from the right side of the heart to the lungs thicken and 
        constrict. As a result, the right side of the heart has to pump 
        harder to move blood into the lungs, causing it to enlarge and 
        ultimately fail.
            (2) In advanced stages of pulmonary hypertension, the 
        patient is able to perform only minimal activity and has 
        symptoms even when resting, resulting in considerable 
        disability. The disease may worsen to the point where the 
        patient is completely bedridden. In a matter of months, many 
        pulmonary hypertension patients have become so functionally 
        deteriorated that they have lost their jobs and are dependent 
        on family and disability benefits.
            (3) Despite the importance of early diagnosis on prognosis, 
        pulmonary hypertension is rarely picked up in a routine medical 
        exam. Even in its later stages, the signs of the disease are 
        frequently confused with more common conditions that affect the 
        heart and lungs. Due to the fact that the average length of 
        time between the onset of symptoms and an accurate diagnosis is 
        presently 2.8 years, nearly three out of four patients have 
        advanced pulmonary hypertension by the time they are accurately 
        diagnosed.
            (4) While pulmonary hypertension remains an incurable 
        condition, progress in our scientific understanding of the 
        disease has led to the development and Food and Drug 
        Administration approval of nine innovative therapies indicated 
        to treat pulmonary hypertension.
            (5) Existing treatment options can significantly extend 
        life and improve quality of life for patients with pulmonary 
        hypertension. The effectiveness of pulmonary hypertension 
        treatment options is directly tied to how early in the 
        progression of the condition a patient can be accurately 
        diagnosed and begin the correct regimen of therapies. Improved 
        early intervention will improve health outcomes for pulmonary 
        hypertension patients while reducing the necessity for more 
        drastic and costly treatment options, such as a lung or heart-
        lung transplant.

SEC. 3. INTERAGENCY PULMONARY HYPERTENSION COORDINATING COMMITTEE.

    (a) Establishment.--The Secretary of Health and Human Services (in 
this Act referred to as the ``Secretary'') shall establish a committee, 
to be known as the ``Interagency Pulmonary Hypertension Coordinating 
Committee'' (in this Act referred to as the ``Committee''), to make 
recommendations on, and coordinate, all efforts within the Department 
of Health and Human Services concerning pulmonary hypertension.
    (b) Responsibilities.--In carrying out its duties under this 
section, the Committee shall--
            (1) develop and annually update a summary of pulmonary 
        hypertension advances in medical research and treatment 
        development and improvement, early and accurate diagnosis, 
        appropriate and timely intervention, transplantation, and 
        access to care and therapies for patients;
            (2) monitor Federal activities with respect to pulmonary 
        hypertension;
            (3) make recommendations to the Secretary regarding 
        appropriate changes to such activities, including 
        recommendations with respect to the strategic plan developed 
        under paragraph (5);
            (4) make recommendations to the Secretary regarding 
        stakeholder participation in decisions relating to pulmonary 
        hypertension;
            (5) develop and annually update a comprehensive strategic 
        plan to cooperatively improve health outcomes for pulmonary 
        hypertension patients which includes--
                    (A) recommendations to improve professional 
                education concerning accurate diagnosis and appropriate 
                intervention for health care providers;
                    (B) recommendations to improve the transplantation 
                criteria and process concerning lung and heart-lung 
                transplants for pulmonary hypertension patients;
                    (C) recommendations to improve public awareness and 
                recognition of pulmonary hypertension;
                    (D) recommendations to improve health care delivery 
                and promote early and accurate diagnosis for pulmonary 
                hypertension patients; and
                    (E) recommendations to systematically advance the 
                full spectrum of biomedical research, including 
                specific recommendations for basic, translational, 
                clinical, and pediatric research, and research training 
                and career development; and
            (6) submit to the Congress the strategic plan under 
        paragraph (5) and any updates to such plan.
    (c) Membership.--
            (1) In general.--The Committee shall be composed of--
                    (A) the Administrator of the Health Resources and 
                Services Administration;
                    (B) the Director of the Centers for Disease Control 
                and Prevention and the directors of such centers at the 
                Centers for Disease Control and Prevention as the 
                Secretary determines appropriate;
                    (C) the Director of the National Institutes of 
                Health and the directors of such institutes, centers, 
                and offices at the National Institutes of Health as the 
                Secretary determines appropriate;
                    (D) the Director of the Agency for Healthcare 
                Research and Quality;
                    (E) the Commissioner of Food and Drugs and the 
                directors of such centers and offices at the Food and 
                Drug Administration as the Secretary determines 
                appropriate;
                    (F) the heads of other relevant agencies as the 
                Secretary deems appropriate; and
                    (G) the additional members appointed under 
                paragraph (2).
            (2) Additional members.--Not fewer than 6 members of the 
        Committee or \1/3\ of the total membership of the Committee, 
        whichever is greater, shall be composed of non-Federal public 
        members to be appointed by the Secretary, of which--
                    (A) at least one such member shall be an individual 
                with a diagnosis of pulmonary hypertension;
                    (B) at least one such member shall be the primary 
                caregiver for an individual with a diagnosis of 
                pulmonary hypertension; and
                    (C) at least one such member shall be a 
                representative of a leading research, advocacy, and 
                support organization primarily serving individuals with 
                a diagnosis of pulmonary hypertension.
    (d) Administrative Support; Terms of Service; Other Provisions.--
The following provisions shall apply with respect to the Committee:
            (1) The Committee shall receive necessary and appropriate 
        administrative support from the Secretary.
            (2) Members of the Committee appointed under subsection 
        (c)(2) shall serve for a term of 4 years, and may be appointed 
        for one or more additional 4-year terms. Any member appointed 
        to fill a vacancy for an unexpired term shall be appointed for 
        the remainder of such term. A member may serve after the 
        expiration of the member's term until a successor has taken 
        office.
            (3) The Committee shall meet at the call of the chairperson 
        or upon the request of the Secretary. The Committee shall meet 
        not fewer than two times each year.
            (4) All meetings of the Committee shall be public and shall 
        include appropriate time periods for questions and 
        presentations by the public.
    (e) Subcommittees; Establishment and Membership.--In carrying out 
its functions, the Committee may establish subcommittees and convene 
workshops and conferences. Such subcommittees shall be composed of 
Committee members and may hold such meetings as are necessary to enable 
the subcommittees to carry out their duties.

SEC. 4. REPORT TO CONGRESS.

    (a) In General.--Not later than one year after the date of 
enactment of this Act, and biennially thereafter, the Secretary, in 
coordination with the Committee, shall prepare and submit to the 
Committee on Health, Education, Labor, and Pensions of the Senate and 
the Committee on Energy and Commerce Committee of the House of 
Representatives a progress report on activities related to improving 
health outcomes for pulmonary hypertension patients.
    (b) Contents.--The report submitted under subsection (a) shall 
contain--
            (1) information on the incidence of pulmonary hypertension 
        and trend data of such incidence since the date of enactment of 
        the Pulmonary Hypertension Research and Diagnosis Act of 2013;
            (2) information on the average time between initial 
        screening and accurate diagnosis as well as the average stage 
        of pulmonary hypertension when appropriate intervention begins 
        and up-to-date, related trend data;
            (3) information on the effectiveness and outcomes of 
        interventions for individuals diagnosed with pulmonary 
        hypertension, including--
                    (A) mortality rate, as well as the frequency of 
                drastic treatment options like lung and heart-lung 
                transplants; and
                    (B) up-to-date, related trend data;
            (4) information on breakthroughs in basic science as well 
        as translational and clinical research activities;
            (5) information on activity to facilitate the development 
        of innovative treatment options and diagnostic tools; and
            (6) information on services and supports provided to 
        individuals with a diagnosis of pulmonary hypertension.

SEC. 5. SUNSET.

    This Act shall not apply after September 30, 2018, and the 
Interagency Pulmonary Hypertension Coordinating Committee shall be 
terminated on such date.