I 
109TH CONGRESS 
1ST SESSION H. R. 3005 
To amend the Public Health Service Act to provide for the expansion, inten-
sification, 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 En-
ergy 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 Insti-
tute with respect to research on pulmonary hypertension. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Pulmonary Hyper-
tension Research Act of 2005’’. 
SEC. 2. FINDINGS. 
The Congress finds as follows:
(1) In order to take full advantage of the tre-
mendous potential for finding a cure or effective 
treatment, the Federal investment in pulmonary hy-
pertension must be expanded, and coordination 
among the national research institutes of the Na-
tional 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 pa-
tients, 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, caus-
ing 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 be-
tween 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 chil-
dren to elderly people, can develop PPH. It also af-
fects people of all racial and ethnic origins with Afri-
can 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 ani-
mal 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 chro-
mosome 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 peo-
ple 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 medi-
cations for PH and three more in trials. However, 
all medications not are affective on all patients. 
Lung transplantation is often considered a treat-
ment 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 iden-
tifying 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 emphy-
sema 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 con-
genital 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 sug-
gesting that approximately one third of sickle cell 
patients develop SPH. 
SEC. 3. EXPANSION, INTENSIFICATION, AND COORDINA-
TION OF ACTIVITIES OF NATIONAL HEART, 
LUNG, AND BLOOD INSTITUTE WITH RESPECT 
TO 
RESEARCH 
ON 
PULMONARY 
HYPER-
TENSION. 
Subpart 2 of part C of title IV of the Public Health 
Service Act (42 U.S.C. 285b et seq.) is amended by insert-
ing 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 coordi-
nate the activities of the Institute with respect to re-
search on pulmonary hypertension. 
‘‘(2) 
COORDINATION
WITH
OTHER
INSTI-
TUTES.—The Director of the Institute shall coordi-