I 
112TH CONGRESS 
1ST SESSION H. R. 2123 
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 
JUNE 3, 2011 
Mr. GALLEGLY (for himself, Mr. WU, and Mr. HIMES) introduced the fol-
lowing bill; which was referred to the Committee on Energy and Com-
merce, and in addition to the Committee on Ways and Means, for a pe-
riod to be subsequently determined by the Speaker, in each case for con-
sideration of such provisions as fall within the jurisdiction of the com-
mittee 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 
2011’’. 
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 that causes abnor-
malities of the blood vessels. A person with HHT 
has the tendency to form blood vessels that lack the 
capillaries between an artery and vein. HHT can 
cause spontaneous hemorrhage or stroke when brain 
or lung arteriovenous malformations, which are tan-
gled blood vessels, rupture unexpectedly, in all age 
groups. In addition to hemorrhagic stroke, embolic 
stroke and brain abscess occur in approximately 
30% of persons with HHT caused by artery-vein 
malformations in the lung (due to lack of capillaries 
between the arterial and venous systems which nor-
mally filter out clots and bacteria), causing disability 
and sudden premature death. 
(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. 
(4) Due to the widespread lack of knowledge, 
accurate diagnosis, and appropriate intervention, 90 
percent of HHT-affected families are at risk for pre-
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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. 
(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 
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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. NATIONAL INSTITUTES OF HEALTH. 
Part B of title IV of the Public Health Service Act 
(42 U.S.C. 284 et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 409K. HEREDITARY HEMORRHAGIC TELANGIECTASIA. 
‘‘(a) HHT INITIATIVE.— 
‘‘(1) ESTABLISHMENT.—The Secretary shall es-
tablish and implement an HHT initiative to assist in 
coordinating activities to improve early detection, 
screening, and treatment of people who suffer from 
HHT. Such initiative shall focus on— 
‘‘(A) advancing research on the causes, di-
agnosis, and treatment of HHT, including 
through the conduct or support of such re-
search; and 
‘‘(B) increasing physician and public 
awareness of HHT. 
‘‘(2) CONSULTATION.—In carrying out this sub-
section, the Secretary shall consult with the Director 
of the National Institutes of Health and the Director 
of the Centers for Disease Control and Prevention. 
‘‘(b) HHT COORDINATING COMMITTEE.— 
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‘‘(1) ESTABLISHMENT.—Not later than 60 days 
after the date of the enactment of this section, the 
Secretary, in consultation with the Director of the 
National Institutes of Health, shall establish a com-
mittee to be known as the HHT Coordinating Com-
mittee. 
‘‘(2) MEMBERSHIP.— 
‘‘(A) IN GENERAL.—The members of the 
Committee shall be appointed by the Secretary, 
in consultation with the Director of the Na-
tional Institutes of Health, and shall consist of 
12 individuals who are experts in HHT or 
arteriovenous malformation (AVM) as follows: 
‘‘(i) Four representatives of HHT 
Treatment Centers of Excellence des-
ignated under section 317U(c)(1). 
‘‘(ii) Four experts in vascular, molec-
ular, or basic science. 
‘‘(iii) Four representatives of the Na-
tional Institutes of Health. 
‘‘(B) CHAIR.—The Secretary shall des-
ignate the Chair of the Committee from among 
its members. 
‘‘(C) INTERIM MEMBERS.—In place of the 
4 members otherwise required to be appointed 
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under paragraph (2)(A)(i), the Secretary may 
appoint 4 experts in vascular, molecular, or 
basic science to serve as members of the Com-
mittee during the period preceding designation 
and establishment of HHT Treatment Centers 
of Excellence under section 317U. 
‘‘(D) PUBLICATION OF NAMES.—Not later 
than 30 days after the establishment of the 
Committee, the Secretary shall publish the 
names of the Chair and members of the Com-
mittee on the Website of the Department of 
Health and Human Services. 
‘‘(E) TERMS.—The members of the Com-
mittee shall each be appointed for a 3-year term 
and, at the end of each such term, may be re-
appointed. 
‘‘(F) VACANCIES.—A vacancy on the Com-
mittee shall be filled by the Secretary in the 
same manner in which the original appointment 
was made. 
‘‘(3) RESPONSIBILITIES.—The Committee shall 
develop and coordinate implementation of a plan to 
advance research and understanding of HHT by— 
‘‘(A) conducting or supporting basic, 
translational, and clinical research on HHT 
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across the relevant national research institutes, 
national centers, and offices of the National In-
stitutes of Health, including the National 
Heart, Lung, and Blood Institute; the National 
Institute of Neurological Disorders and Stroke; 
the National Institutes of Diabetes and Diges-
tive and Kidney Diseases; the Eunice Kennedy 
Shriver National Institute of Child Health and 
Human Development; the National Cancer In-
stitute; and the Office of Rare Diseases; and 
‘‘(B) conducting evaluations and making 
recommendations to the Secretary, the Director 
of the National Institutes of Health, and the 
Director of the National Cancer Institute re-
garding the prioritization and award of Na-
tional Institutes of Health research grants re-
lating to HHT, including with respect to grants 
for— 
‘‘(i) expand understanding of HHT 
through basic, translational, and clinical 
research on the cause, diagnosis, preven-
tion, control, and treatment of HHT; 
‘‘(ii) training programs on HHT for 
scientists and health professionals; and 
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‘‘(iii) HHT genetic testing research to 
improve the accuracy of genetic testing. 
‘‘(c) DEFINITIONS.—In this section: 
‘‘(1) The term ‘Committee’ means the HHT 
Coordinating Committee established under sub-
section (b). 
‘‘(2) The term ‘HHT’ means hereditary hemor-
rhagic telangiectasia.’’. 
SEC. 5. 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). 
‘‘(2) The identification and conduct of inves-
tigations to further develop and support guidelines 
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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. 
‘‘(c) POPULATION SCREENING.—In carrying out pop-
ulation screening under subsection (a)(1), the Director 
shall— 
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‘‘(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 re-
gional population study, supplemented by sentinel 
health care provider or center surveillance, and by 
administrative database analyses as useful, to accu-
rately identify— 
‘‘(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— 
‘‘(A) analyses of the natural history of 
hemorrhagic and embolic stroke in HHT; and 
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‘‘(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 an international database of patients 
assessed at such HHT Treatment Centers of 
Excellence (including with respect to phenotype 
information, genotype 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 
‘‘(C) inclusion of other medical providers 
who treat HHT patients; and 
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‘‘(6) use existing administrative databases on 
non-HHT Treatment Center 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
HHT 
TREATMENT CENTER OF EXCELLENCE.—In carrying out 
subsection (c)(1), the Director may designate as an HHT 
Treatment Center of Excellence only academic health cen-
ters 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-
laboration with one or more partnering organizations 
for personnel or resources, to be able to— 
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