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.
[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2073 Introduced in House (IH)]
113th CONGRESS
1st Session
H. R. 2073
To direct the Secretary of Health and Human Services to establish an
interagency coordinating committee on pulmonary hypertension to develop
recommendations to advance research, increase awareness and education,
and improve health and health care, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
May 21, 2013
Mr. Brady of Texas (for himself, Mrs. Capps, Mr. King of New York, Ms.
Norton, Mr. Roskam, Mr. Costa, and Mr. Bishop of New York) introduced
the following bill; which was referred to the Committee on Energy and
Commerce
_______________________________________________________________________
A BILL
To direct the Secretary of Health and Human Services to establish an
interagency coordinating committee on pulmonary hypertension to develop
recommendations to advance research, increase awareness and education,
and improve health and health care, 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 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.
(f) Sunset.--This section shall not apply after September 30, 2019,
and the Committee shall be terminated on such date.
SEC. 4. REPORT TO CONGRESS.
(a) In General.--On a biennial basis after the date of enactment of
this Act, 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.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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