I 
113TH CONGRESS 
2D SESSION 
H. R. 4592 
To amend the Public Health Service Act to improve the diagnosis and 
treatment of hereditary hemorrhagic telangiectasia, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
MAY 7, 2014 
Mr. GERLACH (for himself and Mr. HIMES) introduced the following bill; 
which was referred to the Committee on Energy and Commerce, and in 
addition to the Committee on Ways and Means, for a period to be subse-
quently determined by the Speaker, in each case for consideration of such 
provisions as fall within the jurisdiction of the committee concerned 
A BILL 
To amend the Public Health Service Act to improve the 
diagnosis and treatment of hereditary hemorrhagic 
telangiectasia, and for other purposes. 
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 ‘‘Hereditary Hemor-
rhagic Telangiectasia Diagnosis and Treatment Act of 
2014’’. 
SEC. 2. FINDINGS. 
The Congress finds as follows: 
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(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 AVM. 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 expendi-
tures. A recent study has found 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 result in the reduction of the suffering of families, 
prevent premature death and disability, and 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 
is amended by inserting after section 317T (42 U.S.C. 
247b–22) the following: 
‘‘SEC. 
317U. 
HEREDITARY 
HEMORRHAGIC 
TELANGIECTASIA. 
‘‘(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: 
‘‘(1) The conduct of population screening de-
scribed in subsection (c). 
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‘‘(2) The identification and conduct of inves-
tigations to further develop and support guidelines 
for diagnosis of, and intervention for, HHT, includ-
ing cost-benefit studies. 
‘‘(3) The development of a standardized survey 
and screening tool on family history. 
‘‘(4) The establishment, in collaboration with a 
voluntary health organization representing HHT 
families, of an HHT resource center within the Cen-
ters for Disease Control and Prevention to provide 
comprehensive education on, and disseminate infor-
mation about, HHT to health professionals, pa-
tients, industry, and the public. 
‘‘(5) The conduct or support of public aware-
ness programs in collaboration with medical, genetic, 
and professional organizations to improve the edu-
cation of health professionals about HHT. 
‘‘(b) COLLABORATIVE APPROACHES.—The Director 
shall carry out this section through collaborative ap-
proaches within the National Center on Birth Defects and 
Developmental Disabilities and the Division for Heart Dis-
ease and Stroke Prevention of the Centers for Disease 
Control and Prevention for clotting and bleeding dis-
orders. 
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‘‘(c) POPULATION SCREENING.—In carrying out pop-
ulation screening under subsection (a)(1), the Director 
shall— 
‘‘(1) designate and provide funding for a suffi-
cient number of HHT Treatment Centers of Excel-
lence to improve patient access to information, treat-
ment, and care by HHT experts; 
‘‘(2) conduct surveillance by means of a popu-
lation study, supplemented by sentinel health care 
provider or center surveillance, and by administra-
tive database analyses as useful, to accurately iden-
tify— 
‘‘(A) the prevalence of HHT; and 
‘‘(B) the prevalence of hemorrhagic and 
embolic stroke, and brain abscess, resulting 
from HHT; 
‘‘(3) include HHT screening questions in the 
Behavioral Risk Factor Surveillance System survey 
conducted by the Centers for Disease Control and 
Prevention in order to screen a broader population 
and more accurately determine the prevalence of 
HHT; 
‘‘(4) provide data collected under paragraph 
(2)(B) to the Paul Coverdell National Acute Stroke 
Registry to facilitate— 
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‘‘(A) analyses of the natural history of 
hemorrhagic and embolic stroke in HHT; and 
‘‘(B) development of screening and artery- 
vein malformation treatment guidelines specific 
to prevention of complications from HHT; 
‘‘(5) develop and implement programs, targeted 
for physicians and health care professional groups 
likely to be accessed by families with HHT, to in-
crease HHT diagnosis and treatment rates through 
the— 
‘‘(A) establishment of a partnership with 
HHT Treatment Centers of Excellence des-
ignated under paragraph (1) through the cre-
ation of a database of patients assessed at such 
HHT Treatment Centers of Excellence (includ-
ing with respect to phenotype information, gen-
otype information, transfusion dependence, and 
radiological findings); 
‘‘(B) integration of such database with— 
‘‘(i) the universal data collection sys-
tem used by the Centers for monitoring he-
mophilia with the blood disorders; and 
‘‘(ii) the Paul Coverdell National 
Acute Stroke Registry; and 
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‘‘(C) inclusion of other medical providers 
who treat HHT patients; and 
‘‘(6) use existing administrative databases on 
non-HHT Treatment Centers of Excellence pa-
tients— 
‘‘(A) to learn about the natural history of 
HHT and the efficacy of various treatment mo-
dalities; and 
‘‘(B) to better inform and develop screen-
ing and treatment guidelines associated with 
improvement in health care outcomes, and re-
search priorities relevant to HHT. 
‘‘(d) ELIGIBILITY FOR DESIGNATION AS AN HHT 
TREATMENT CENTER OF EXCELLENCE.—In carrying out 
subsection (c)(1), the Director may designate, as an HHT 
Treatment Center of Excellence, academic health centers 
demonstrating each of the following: 
‘‘(1) The academic health center possesses a 
team of medical experts capable of providing com-
prehensive evaluation, treatment, and education to 
individuals with known or suspected HHT and their 
health care providers. 
‘‘(2) The academic health center has sufficient 
personnel with knowledge about HHT, or formal col-
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