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.

Summary: Pulmonary Hypertension Research Act of 2001 - 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. Requires a report.

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.''.