[Congressional Bills 107th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1297 Introduced in House (IH)]
107th CONGRESS
1st Session
H. R. 1297
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
March 29, 2001
Mr. Brady of Texas 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 2001''.
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) Primary, or unexplained, pulmonary hypertension
(``PPH'') is a rare lung disorder which occurs for no apparent
reason. It has been historically chronic and incurable with a
poor survival rate.
(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 equally.
(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.
(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.
(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) 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.
(10) During the period January 1996 through December 1997
almost 6,000,000 Americans took anorexic drugs, which can cause
PPH in some people. Thousands now have PPH and are in terminal
stages or have already succumbed to the disease. It is
anticipated that many more cases of PPH from diet drugs will be
diagnosed within the coming years.
(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, liver disease and certain diet
drugs.
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 are authorized to be appropriated such sums as
may be necessary up to $25,000,000 for each of the fiscal years 2002
through 2006. Such authorizations of appropriations are in addition to
any other authorization of appropriations that is available for such
purpose.''.
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