Control and Prevention for clotting and bleeding dis-
orders. 
‘‘(c) RELATED ACTIVITIES.—In carrying out sub-
section (a), the Director shall— 
‘‘(1) designate and provide funding for a suffi-
cient number of HHT Treatment Centers of Excel-
lence— 
‘‘(A) to collect data on the prevalence of, 
and stroke incidence associated with, HHT; and 
‘‘(B) to improve patient access to informa-
tion, diagnosis, early intervention, and treat-
ment of HHT; 
‘‘(2) provide data collected under paragraph (1) 
to the Paul Coverdell National Acute Stroke Reg-
istry to facilitate— 
‘‘(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; and 
‘‘(3) 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— 
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‘‘(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); and 
‘‘(B) inclusion of other medical providers 
who treat HHT patients. 
‘‘(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, only academic health cen-
ters demonstrated to have each of the following: 
‘‘(1) A team of medical experts capable of pro-
viding comprehensive evaluation, treatment, and 
education to individuals with known or suspected 
HHT and their health care providers. 
‘‘(2) Administrative staff with sufficient knowl-
edge to respond to patient inquiries and coordinate 
patient care in a timely fashion.’’. 
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SEC. 5. ADDITIONAL HEALTH AND HUMAN SERVICES AC-
TIVITIES. 
With respect to hereditary hemorrhagic telangiectasia 
(in this section referred to as ‘‘HHT’’), the Secretary of 
Health and Human Services, acting through the Adminis-
trator of the Centers for Medicare & Medicaid Services, 
shall award grants on a competitive basis— 
(1) for an analysis by grantees of the Medicare 
Provider Analysis and Review (MEDPAR) file to de-
velop preliminary estimates from the Medicare pro-
gram under title XVIII of the Social Security Act 
for preventable costs of annual health care expendi-
tures including items, services, and treatments asso-
ciated with untreated HHT furnished to individuals 
with HHT, as well as socioeconomic costs such as 
disability expenditures associated with preventable 
medical events in this population, who are entitled to 
benefits under part A of title XVIII of the Social Se-
curity Act or enrolled under part B of such title; and 
(2) to make recommendations regarding an en-
hanced data collection protocol to permit a more 
precise determination of the total costs described in 
paragraph (1). 
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SEC. 6. 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.— 
‘‘(1) ESTABLISHMENT.—Not later than 60 days 
after the date of enactment of this section, the Sec-
retary, in consultation with the Director of the Na-
tional Institutes of Health, shall establish a com-
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