Pulmonary Hypertension Research Act of 2005 - Amends the Public Health Service Act to require the Director of the National Heart, Lung, and Blood Institute to expand, intensify, and coordinate the activities of the Institute with respect to research on pulmonary hypertension and to coordinate the Director's activities with related activities of other national research institutes and National Institutes of Health (NIH) agencies. Requires the Director to make grants to, or enter into contracts with, public or nonprofit private entities for the development and operation of centers to conduct research and programs on pulmonary hypertension, including: (1) basic and clinical research into the cause, diagnosis, early detection, prevention, control, and treatment of the disease; (2) training programs for scientists and health professionals; (3) programs to provide information and continuing education to health professionals; and (4) programs for the dissemination of information to the public.
Requires the Director to establish: (1) a data system for the collection, storage, analysis, retrieval, and dissemination of data derived from patient populations with pulmonary hypertension; and (2) an information clearinghouse to facilitate and enhance knowledge and understanding of pulmonary hypertension by health professionals, patients, industry, and the public.
[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3005 Introduced in House (IH)]
109th CONGRESS
1st Session
H. R. 3005
To amend the Public Health Service Act to provide for the expansion,
intensification, and coordination of the activities of the National
Heart, Lung, and Blood Institute with respect to research on pulmonary
hypertension.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
June 21, 2005
Mr. Brady of Texas (for himself, Mr. Lantos, Mr. Blunt, and Mr. Hoyer)
introduced the following bill; which was referred to the Committee on
Energy and Commerce
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to provide for the expansion,
intensification, and coordination of the activities of the National
Heart, Lung, and Blood Institute with respect to research on pulmonary
hypertension.
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 Act
of 2005''.
SEC. 2. FINDINGS.
The Congress finds as follows:
(1) In order to take full advantage of the tremendous
potential for finding a cure or effective treatment, the
Federal investment in pulmonary hypertension must be expanded,
and coordination among the national research institutes of the
National Institutes of Health must be strengthened.
(2) Pulmonary hypertension is a serious and often fatal
condition where the blood pressure in the lungs rises to
dangerously high levels. In PH 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.
(3) In the United States it has been estimated that 300 new
cases of PPH are diagnosed each year, or about two persons per
million population per year; the greatest number are reported
in women between the ages of 21 and 40. While at one time the
disease was thought to occur among young women almost
exclusively; we now know, however, that men and women in all
age ranges, from very young children to elderly people, can
develop PPH. It also affects people of all racial and ethnic
origins with African Americans suffering from a mortality rate
twice as high as that affecting Caucasians.
(4) The low prevalence of PPH makes learning more about the
disease extremely difficult. Studies of PPH also have been
difficult because a good animal model of the disease has not
been available.
(5) In about 6 to 10 percent of cases, PPH is familial. The
familial PPH gene is located on chromosome 2 and was discovered
in July 2000. This discovery provided new insights for
determining the molecular basis of PPH and opened new avenues
of study for understanding the fundamental nature of the
disease.
(6) In the more advanced stages of PPH, the patient is able
to perform only minimal activity and has symptoms even when
resting. The disease may worsen to the point where the patient
is completely bedridden.
(7) PPH remains a diagnosis of exclusion and is rarely
picked up in a routine medical examination. Even in its later
stages, the signs of the disease can be confused with other
conditions affecting the heart and lungs. The use of new
diagnostic standards has been positively related to the rates
of diagnosis.
(8) In 1981, the National Heart, Lung, and Blood Institute
established the first PPH-patient registry in the world. The
registry followed 194 people with PPH over a period of at least
1 year and, in some cases, for as long as 7.5 years. Much of
what we know about the illness today stems from this study.
(9) As research progresses, so do treatments for PH.
Currently, there are four FDA-approved medications for PH and
three more in trials. However, all medications not are
affective on all patients. Lung transplantation is often
considered a treatment of last resort for PH.
(10) Because we still do not understand the cause or have a
cure for PPH, basic research studies are focusing on the
possible involvement of immunologic and genetic factors in the
cause and progression of PPH, looking at agents that cause
narrowing of the pulmonary blood vessels, and identifying
factors that cause growth of smooth muscle and formation of
scar tissue in the vessel walls.
(11) Secondary pulmonary hypertension (``SPH'') means the
cause is known. Common causes of SPH are the breathing
disorders emphysema and bronchitis. Other less frequent causes
are the inflammatory or collagen vascular diseases such as
scleroderma, CREST syndrome or systemic lupus erythematosus
(``SLE''). Other causes include congenital heart diseases that
cause shunting of extra blood through the lungs like
ventricular and atrial septal defects, chronic pulmonary
thromboembolism, HIV infection, and liver disease. Sickle cell
anemia is also linked to SPH with preliminary studies
suggesting that approximately one third of sickle cell patients
develop SPH.
SEC. 3. EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES OF
NATIONAL HEART, LUNG, AND BLOOD INSTITUTE WITH RESPECT TO
RESEARCH ON PULMONARY HYPERTENSION.
Subpart 2 of part C of title IV of the Public Health Service Act
(42 U.S.C. 285b et seq.) is amended by inserting after section 424B the
following section:
``pulmonary hypertension
``Sec. 424C. (a) In General.--
``(1) Expansion of activities.--The Director of the
Institute shall expand, intensify, and coordinate the
activities of the Institute with respect to research on
pulmonary hypertension.
``(2) Coordination with other institutes.--The Director of
the Institute shall coordinate the activities of the Director
under paragraph (1) with similar activities conducted by other
national research institutes and agencies of the National
Institutes of Health to the extent that such Institutes and
agencies have responsibilities that are related to pulmonary
hypertension.
``(b) Centers of Excellence.--
``(1) In general.--In carrying out subsection (a), the
Director of the Institute shall make grants to, or enter into
contracts with, public or nonprofit private entities for the
development and operation of centers to conduct research on
pulmonary hypertension.
``(2) Research, training, and information and education.--
``(A) In general.--With respect to pulmonary
hypertension, each center assisted under paragraph (1)
shall--
``(i) conduct basic and clinical research
into the cause, diagnosis, early detection,
prevention, control, and treatment of such
disease;
``(ii) conduct training programs for
scientists and health professionals;
``(iii) conduct programs to provide
information and continuing education to health
professionals; and
``(iv) conduct programs for the
dissemination of information to the public.
``(B) Stipends for training of health
professionals.--A center under paragraph (1) may use
funds under such paragraph to provide stipends for
scientists and health professionals enrolled in
programs described in subparagraph (A)(ii).
``(3) Coordination of centers; reports.--The Director
shall, as appropriate, provide for the coordination of
information among centers under paragraph (1) and ensure
regular communication between such centers, and may require the
periodic preparation of reports on the activities of the
centers and the submission of the reports to the Director.
``(4) Organization of centers.--Each center under paragraph
(1) shall use the facilities of a single institution, or be
formed from a consortium of cooperating institutions, meeting
such requirements as may be prescribed by the Director.
``(5) Number of centers; duration of support.--The Director
shall, subject to the extent of amounts made available in
appropriations Acts, provide for the establishment of not less
than three centers under paragraph (1). Support of such a
center may be for a period not exceeding 5 years. Such period
may be extended for one or more additional periods not
exceeding 5 years if the operations of such center have been
reviewed by an appropriate technical and scientific peer review
group established by the Director and if such group has
recommended to the Director that such period should be
extended.
``(c) Data System; Clearinghouse.--
``(1) Data system.--The Director of the Institute shall
establish a data system for the collection, storage, analysis,
retrieval, and dissemination of data derived from patient
populations with pulmonary hypertension, including where
possible, data involving general populations for the purpose of
identifying individuals at risk of developing such condition.
``(2) Clearinghouse.--The Director of the Institute shall
establish an information clearinghouse to facilitate and
enhance, through the effective dissemination of information,
knowledge and understanding of pulmonary hypertension by health
professionals, patients, industry, and the public.
``(d) Public Input.--In carrying out subsection (a), the Director
of the Institute shall provide for means through which the public can
obtain information on the existing and planned programs and activities
of the National Institutes of Health with respect to primary
hypertension and through which the Director can receive comments from
the public regarding such programs and activities.
``(e) Reports.--The Director of the Institute shall prepare
biennial reports on the activities conducted and supported under this
section, and shall include such reports in the biennial reports
prepared by the Director under section 407.
``(f) Authorization of Appropriations.--For the purpose of carrying
out this section, there is authorized to be appropriated $50,000,000
for each of the fiscal years 2006 through 2010.''.
<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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