(1) 
Hereditary 
hemorrhagic 
telangiectasia 
(HHT) is a largely undiagnosed or misdiagnosed 
vascular genetic bleeding disorder resulting in ar-
tery-vein malformations (AVMs) which lead to pre-
ventable catastrophic and disabling consequences. 
HHT can cause sudden death at any age, unless de-
tected and treated. Early detection, screening, and 
use of readily available treatment can prevent pre-
mature deaths and long-term health complications 
resulting from HHT. A person with HHT has the 
tendency to form blood vessels that lack the cap-
illaries between an artery and vein. HHT often re-
sults in spontaneous hemorrhage or stroke from 
brain or lung AVMs. In addition to hemorrhagic 
stroke, embolic stroke and brain abscess occur in ap-
proximately 30 percent of persons with HHT artery- 
vein malformations in the lung (due to lack of cap-
illaries between the arterial and venous systems 
which normally filter out clots and bacteria). 
(2) One in 5,000 American children and adults 
suffer from HHT. 
(3) Studies have found an increase in morbidity 
and mortality rates for individuals who suffer from 
HHT. 
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(4) Due to the widespread lack of knowledge, 
accurate diagnosis, and appropriate intervention, 90 
percent of HHT-affected families are at risk for pre-
ventable, life-threatening, and disabling medical inci-
dents such as stroke. 
(5) Early detection, screening, and treatment 
can prevent premature deaths, spontaneous hemor-
rhage, hemorrhagic stroke, embolic stroke, brain ab-
scess, and other long-term health care complications 
resulting from HHT. 
(6) HHT is an important health condition with 
serious health consequences which are amenable to 
early identification and diagnosis with suitable tests, 
and acceptable and available treatments in estab-
lished treatment centers. 
(7) Timely identification and management of 
HHT cases is an important public health objective 
because it will save lives, prevent disability, and re-
duce direct and indirect health care costs. A recent 
study found that use of a genetic testing model for 
HHT diagnosis saves $9.9 million in that screening 
can be limited to those persons within the family 
groups who actually have the gene defect, leading to 
early intervention in those found to have treatable 
AVMs. 
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(8) Without a new program for early detection, 
screening, and treatment, 14,000 children and 
adults who suffer from HHT in the population today 
will suffer premature death and disability. 
SEC. 3. PURPOSE. 
The purpose of this Act is to create a federally led 
and financed initiative for early diagnosis and appropriate 
treatment of hereditary hemorrhagic telangiectasia that 
will— 
(1) reduce the suffering of families; 
(2) prevent premature death and disability; and 
(3) lower health care costs through proven 
treatment interventions. 
SEC. 4. CENTERS FOR DISEASE CONTROL AND PREVEN-
TION. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.) is amended by inserting after sec-
tion 317T the following: 
‘‘SEC. 317U. HEREDITARY HEMORRHAGIC TELANGIECTA-
SIA. 
‘‘(a) IN GENERAL.—With respect to hereditary hem-
orrhagic telangiectasia (in this section referred to as 
‘HHT’), the Director of the Centers for Disease Control 
and Prevention (in this section referred to as the ‘Direc-
tor’) shall carry out the following activities: 
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