S. 2465 

One Hundred Fifteenth Congress 

of the 

United States of America 

AT THE SECOND SESSION 

Begun and held at the City of Washington on Wednesday, 

the third day of January, two thousand and eighteen 

An Act 

To amend the Public Health Service Act to reauthorize a sickle cell disease prevention 

and treatment demonstration program and to provide for sickle cell disease research, surveillance, prevention, and treatment. 

Be it enacted by the Senate and House of Representatives of 

the United States of America in Congress assembled, 

SECTION 1. SHORT TITLE. 

This Act may be cited as the ‘‘Sickle Cell Disease and Other 

Heritable Blood Disorders Research, Surveillance, Prevention, and 

Treatment Act of 2018’’. 

SEC. 2. DATA COLLECTION ON CERTAIN BLOOD DISORDERS. 

Part A of title XI of the Public Health Service Act is amended 

by inserting after section 1105 (42 U.S.C. 300b–4) the following: 

‘‘SEC. 1106. SICKLE CELL DISEASE AND OTHER HERITABLE BLOOD 

DISORDERS RESEARCH, SURVEILLANCE, PREVENTION, 

AND TREATMENT. 

‘‘(a) GRANTS.— 

‘‘(1) IN GENERAL.—The Secretary may award grants related 

to heritable blood disorders, including sickle cell disease, for 

one or more of the following purposes: 

‘‘(A) To collect and maintain data on such diseases 

and conditions, including subtypes as applicable, and their 

associated health outcomes and complications, including 

for the purpose of— 

‘‘(i) improving national incidence and prevalence 

data; 

‘‘(ii) identifying health disparities, including the 

geographic distribution, related to such diseases and 

conditions; 

‘‘(iii) assessing the utilization of therapies and 

strategies to prevent complications; and 

‘‘(iv) evaluating the effects of genetic, environmental, behavioral, and other risk factors that may 

affect such individuals. 

‘‘(B) To conduct public health activities with respect 

to such conditions, which may include— 

‘‘(i) developing strategies to improve health outcomes and access to quality health care for the 

screening for, and treatment and management of, such 

diseases and conditions, including through public-private partnerships; 
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‘‘(ii) providing support to community-based 

organizations and State and local health departments 

in conducting education and training activities for 

patients, communities, and health care providers concerning such diseases and conditions; 

‘‘(iii) supporting State health departments and 

regional laboratories, including through training, in 

testing to identify such diseases and conditions, 

including specific forms of sickle cell disease, in individuals of all ages; and 

‘‘(iv) the identification and evaluation of best practices for treatment of such diseases and conditions, 

and prevention and management of their related complications. 

‘‘(2) POPULATION INCLUDED.—The Secretary shall, to the 

extent practicable, award grants under this subsection to 

eligible entities across the United States to improve data on 

the incidence and prevalence of heritable blood disorders, 

including sickle cell disease, and the geographic distribution 

of such diseases and conditions. 

‘‘(3) APPLICATION.—To seek a grant under this subsection, 

an eligible entity shall submit an application to the Secretary 

at such time, in such manner, and containing such information 

as the Secretary may require. 

‘‘(4) PRIORITY.—In awarding grants under this subsection, 

the Secretary may give priority, as appropriate, to eligible 

entities that have a relationship with a community-based 

organization that has experience in, or is capable of, providing 

services to individuals with heritable blood disorders, including 

sickle cell disease. 

‘‘(5) ELIGIBLE ENTITY.—In this subsection, the term ‘eligible 

entity’ includes the 50 States, the District of Columbia, the 

Commonwealth of Puerto Rico, the United States Virgin 

Islands, the Commonwealth of the Northern Mariana Islands, 

American Samoa, Guam, the Federated States of Micronesia, 

the Republic of Marshall Islands, the Republic of Palau, Indian 

tribes, a State or local health department, an institution of 

higher education, or a nonprofit entity with appropriate experience to conduct the activities under this subsection.’’. 

SEC. 3. SICKLE CELL DISEASE PREVENTION AND TREATMENT. 

(a) REAUTHORIZATION.—Section 712(c) of the American Jobs 

Creation Act of 2004 (Public Law 108–357; 42 U.S.C. 300b–1 note) 

is amended— 

(1) by striking ‘‘Sickle Cell Disease’’ each place it appears 

and inserting ‘‘sickle cell disease’’; 

(2) in paragraph (1)(A), by striking ‘‘shall conduct a demonstration program by making grants to up to 40 eligible entities for each fiscal year in which the program is conducted 

under this section for the purpose of developing and establishing systemic mechanisms to improve the prevention and 

treatment of Sickle Cell Disease’’ and inserting ‘‘shall continue 

efforts, including by awarding grants, to develop or establish 

mechanisms to improve the treatment of sickle cell disease, 

and to improve the prevention and treatment of complications 

of sickle cell disease, in populations with a high proportion 

of individuals with sickle cell disease’’; 
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(3) in paragraph (1)(B)— 

(A) by striking clause (ii) (relating to priority); and 

(B) by striking ‘‘GRANT AWARD REQUIREMENTS’’ and 

all that follows through ‘‘The Administrator shall’’ and 

inserting ‘‘GEOGRAPHIC DIVERSITY.—The Administrator 

shall’’; 

(4) in paragraph (2), by adding the following new subparagraph at the end: 

‘‘(E) To provide or coordinate services for adolescents 

with sickle cell disease making the transition to adult 

health care.’’; and 

(5) in paragraph (6), by striking ‘‘$10,000,000 for each 

of fiscal years 2005 through 2009’’ and inserting ‘‘$4,455,000 

for each of fiscal years 2019 through 2023’’. 

(b) TECHNICAL CHANGES.—Subsection (c) of section 712 of the 

American Jobs Creation Act of 2004 (Public Law 108–357; 42 U.S.C. 

300b–1 note), as amended by subsection (a), is— 

(1) transferred to the Public Health Service Act (42 U.S.C. 

201 et seq.); 

(2) redesignated as subsection (b); and 

(3) inserted at the end of section 1106 of such Act, as 

added by section 2 of this Act. 

SEC. 4. SENSE OF THE SENATE. 

It is the Sense of the Senate that further research should 

be undertaken to expand the understanding of the causes of, and 

to find cures for, heritable blood disorders, including sickle cell 

disease. 

Speaker of the House of Representatives. 

Vice President of the United States and

President of the Senate.