stroke for a child with SCD is at least monthly blood 
transfusions throughout childhood for many, and 
throughout life for some, requiring removal of sickle 
blood and replacement with normal blood. 
(12) With acute lung complications, trans-
fusions are usually required and are often the only 
therapy demonstrated to prevent premature death. 
SEC. 3. INCLUSION OF PRIMARY AND SECONDARY PRE-
VENTATIVE MEDICAL STRATEGIES FOR CHIL-
DREN AND ADULTS WITH SICKLE CELL DIS-
EASE AS MEDICAL ASSISTANCE UNDER THE 
MEDICAID PROGRAM. 
(a) IN GENERAL.—Section 1905 of the Social Secu-
rity Act (42 U.S.C. 1396d) is amended—
(1) in subsection (a)—
(A) by striking ‘‘and’’ at the end of para-
graph (26); 
(B) by redesignating paragraph (27) as 
paragraph (28); and 
(C) by inserting after paragraph (26), the 
following: 
‘‘(27) subject to subsection (x), primary and 
secondary preventative medical strategies, including 
prophylaxes, and treatment and services for individ-
uals who have Sickle Cell Disease; and’’; and
(2) by adding at the end the following: 
‘‘(x) For purposes of subsection (a)(27), the strate-
gies, treatment, and services described in that subsection 
include the following: 
‘‘(1) 
Chronic 
blood 
transfusion 
(with 
deferoxamine chelation) to prevent stroke in individ-
uals with Sickle Cell Disease who have been identi-
fied as being at high risk for stroke. 
‘‘(2) Genetic counseling and testing for individ-
uals with Sickle Cell Disease or the sickle cell trait. 
‘‘(3) Other treatment and services to prevent 
individuals who have Sickle Cell Disease and who 
have had a stroke from having another stroke.’’. 
(b) FEDERAL REIMBURSEMENT
FOR EDUCATION 
AND OTHER SERVICES RELATED TO THE PREVENTION 
AND TREATMENT OF SICKLE CELL DISEASE.—Section 
1903(a)(3) of the Social Security Act (42 U.S.C. 
1396b(a)(3)) is amended—
(1) in subparagraph (D), by striking ‘‘plus’’ at 
the end and inserting ‘‘and’’; and 
(2) by adding at the end the following: 
‘‘(E) 50 percent of the sums expended with 
respect to costs incurred during such quarter as 
are attributable to providing—
‘‘(i) services to identify and educate 
individuals who have Sickle Cell Disease or 
who are carriers of the sickle cell gene, in-
cluding education regarding how to iden-
tify such individuals; or 
‘‘(ii) education regarding the risks of 
stroke and other complications, as well as 
the prevention of stroke and other com-
plications, in individuals who have Sickle 
Cell Disease; plus’’. 
(c) EFFECTIVE DATE.—The amendments made by 
this section take effect on the date of enactment of this 
Act and apply to medical assistance and services provided 
under title XIX of the Social Security Act (42 U.S.C. 
1396 et seq.) on or after that date, without regard to 
whether final regulations to carry out such amendments 
have been promulgated by such date. 
SEC. 4. DEMONSTRATION PROGRAM FOR THE DEVELOP-
MENT AND ESTABLISHMENT OF SYSTEMIC 
MECHANISMS FOR THE PREVENTION AND 
TREATMENT OF SICKLE CELL DISEASE. 
(a) AUTHORITY TO CONDUCT DEMONSTRATION PRO-
GRAM.—
(1) IN GENERAL.—The Administrator, through 
the Bureau of Primary Health Care and the Mater-
nal and Child Health Bureau, shall conduct a dem-
onstration program by making grants to up to 40 el-
igible entities for each fiscal year in which the pro-
gram is conducted under this section for the purpose 
of developing and establishing systemic mechanisms 
to improve the prevention and treatment of Sickle 
Cell Disease, including through—
(A) the coordination of service delivery for 
individuals with Sickle Cell Disease; 
(B) genetic counseling and testing; 
(C) bundling of technical services related 
to the prevention and treatment of Sickle Cell 
Disease; 
(D) training of health professionals; and 
(E) identifying and establishing other ef-
forts related to the expansion and coordination 
of education, treatment, and continuity of care 
programs for individuals with Sickle Cell Dis-
ease. 
(2) GRANT AWARD REQUIREMENTS.—
(A) GEOGRAPHIC
DIVERSITY.—The Ad-
ministrator shall, to the extent practicable, 
award grants under this section to eligible enti-
ties located in different regions of the United 
States.
(B) PRIORITY.—In awarding grants under 
this section, the Administrator shall give pri-
ority to awarding grants to eligible entities that 
are—
(i) Federally-qualified health centers 
that have a partnership or other arrange-
ment with a comprehensive Sickle Cell Dis-
ease treatment center that does not receive 
funds from the National Institutes of 
Health; or 
(ii) Federally-qualified health centers 
that intend to develop a partnership or 
other arrangement with a comprehensive 
Sickle Cell Disease treatment center that 
does not receive funds from the National 
Institutes of Health. 
(b) ADDITIONAL REQUIREMENTS.—An eligible entity 
awarded a grant under this section shall use funds made 
available under the grant to carry out, in addition to the 
activities described in subsection (a)(1), the following ac-
tivities: 
(1) To facilitate and coordinate the delivery of 
education, treatment, and continuity of care for indi-
viduals with Sickle Cell Disease under—
(A) the entity’s collaborative agreement 
with a community-based Sickle Cell Disease or-
ganization or a nonprofit entity that works with 
individuals who have Sickle Cell Disease; 
(B) the Sickle Cell Disease newborn 
screening program for the State in which the 
entity is located; and 
(C) the maternal and child health program 
under title V of the Social Security Act (42 
U.S.C. 701 et seq.) for the State in which the 
entity is located. 
(2) To train nursing and other health staff who 
specialize in pediatrics, obstetrics, internal medicine, 
or family practice to provide health care and genetic 
counseling for individuals with the sickle cell trait. 
(3) To enter into a partnership with adult or 
pediatric hematologists in the region and other re-
gional experts in Sickle Cell Disease at tertiary and 
academic health centers and State and county health 
offices. 
(4) To identify and secure resources for ensur-
ing reimbursement under the medicaid program, 
State children’s health insurance program, and other 
health programs for the prevention and treatment of 
Sickle Cell Disease, including the genetic testing of
parents or other appropriate relatives of children 
with Sickle Cell Disease and of adults with Sickle 
Cell Disease. 
(c) NATIONAL COORDINATING CENTER.—
(1) ESTABLISHMENT.—The Administrator shall 
enter into a contract with an entity to serve as the 
National Coordinating Center for the demonstration 
program conducted under this section. 
(2) ACTIVITIES DESCRIBED.—The National Co-
ordinating Center shall—
(A) collect, coordinate, monitor, and dis-
tribute data, best practices, and findings re-
garding the activities funded under grants made 
to eligible entities under the demonstration pro-
gram; 
(B) develop a model protocol for eligible 
entities with respect to the prevention and 
treatment of Sickle Cell Disease; 
(C) develop educational materials regard-
ing the prevention and treatment of Sickle Cell 
Disease; and 
(D) prepare and submit to Congress a 
final report that includes recommendations re-
garding the effectiveness of the demonstration
program conducted under this section and such 
direct outcome measures as—
(i) the number and type of health care 
resources utilized (such as emergency room 
visits, hospital visits, length of stay, and 
physician visits for individuals with Sickle 
Cell Disease); and 
(ii) the number of individuals that 
were tested and subsequently received ge-
netic counseling for the sickle cell trait. 
(d) APPLICATION.—An eligible entity desiring a 
grant under this section shall submit an application to the 
Administrator at such time, in such manner, and con-
taining such information as the Administrator may re-
quire. 
(e) DEFINITIONS.—In this section: 
(1) ADMINISTRATOR.—The term ‘‘Adminis-
trator’’ means the Administrator of the Health Re-
sources and Services Administration. 
(2) ELIGIBLE ENTITY.—The term ‘‘eligible enti-
ty’’ means a Federally-qualified health center, a non-
profit hospital or clinic, or a university health center 
that provides primary health care, that—
(A) has a collaborative agreement with a 
community-based Sickle Cell Disease organiza-
tion or a nonprofit entity with experience in 
working with individuals who have Sickle Cell 
Disease; and 
(B) demonstrates to the Administrator 
that either the Federally-qualified health center, 
the nonprofit hospital or clinic, the university 
health center, the organization or entity de-
scribed in subparagraph (A), or the experts de-
scribed in subsection (b)(3), has at least 5 
years of experience in working with individuals 
who have Sickle Cell Disease. 
(3) 
FEDERALLY-QUALIFIED
HEALTH
CEN-
TER.—The term ‘‘Federally-qualified health center’’ 
has the meaning given that term in section 
1905(l)(2)(B) of the Social Security Act (42 U.S.C. 
1396d(l)(2)(B)). 
(f) AUTHORIZATION OF APPROPRIATIONS.—There is 
authorized to be appropriated to carry out this section, 
$10,000,000 for each of fiscal years 2004 through 2009.
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