laboration with one or more partnering organizations 
for personnel or resources, to be able to— 
‘‘(A) respond in a coordinated, multidisci-
plinary way to patient inquiries; and 
‘‘(B) coordinate evaluation, treatment, and 
education of patients and their families in a 
timely manner. 
‘‘(3) The academic health center has the fol-
lowing personnel, facilities, and patient volume: 
‘‘(A) A medical director with— 
‘‘(i) specialized knowledge of the main 
organ manifestations of HHT; and 
‘‘(ii) the ability to coordinate the mul-
tidisciplinary diagnosis and treatment of 
patients referred to the center. 
‘‘(B) Administrative staff with— 
‘‘(i) sufficient knowledge to respond to 
patient inquiries and coordinate patient 
care in a timely fashion; and 
‘‘(ii) adequate financial support to 
allow the staff to commit at least 25 to 50 
percent of their time on the job to HHT. 
‘‘(C) An otolaryngologist with experience 
and expertise in the treatment of recurrent epi-
staxis in HHT patients. 
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‘‘(D) An interventional radiologist with ex-
perience and expertise in the treatment of pul-
monary arteriovenous malformations (AVM). 
‘‘(E) A genetic counselor or geneticist with 
the expertise to provide HHT-specific genetic 
counseling to patients and families. 
‘‘(F) On-site facilities to screen for all 
major organ manifestations of HHT. 
‘‘(G) A patient volume of at least 25 new 
HHT patients per year. 
‘‘(H) Established mechanisms to coordi-
nate surveillance and outreach with HHT pa-
tient advocacy organizations.’’. 
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-
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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). 
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 
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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 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). 
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‘‘(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 
under subparagraph (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. 
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‘‘(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 
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-
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lating to HHT, including with respect to grants 
for— 
‘‘(i) expanding 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 
‘‘(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. 7. AUTHORIZATION OF APPROPRIATIONS. 
(a) IN GENERAL.—To carry out section 317U of the 
Public Health Service Act as added by section 4 of this 
Act, section 5 of this Act, and section 409K of the Public 
Health Service Act as added by section 6 of this Act, there 
is authorized to be appropriated $5,000,000 for each of 
fiscal years 2015 through 2019. 
(b) RESOURCE CENTER.—Of the amount authorized 
to be appropriated under subsection (a) for each of fiscal 
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years 2015 through 2019, $1,000,000 shall be for car-
rying out section 317U(a)(4) of the Public Health Service 
Act, as added by section 4 of this Act. 
(c) OFFSET.—There is authorized to be appropriated 
to the Department of Health and Human Services for sal-
aries and expenses of the Department for each of fiscal 
years 2015 through 2019 the amount that is $5,000,000 
less than the amount appropriated for such salaries and 
expenses for fiscal year 2014. 
Æ 
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