I 

108TH CONGRESS 

1ST SESSION H. R. 1736

To amend title XIX of the Social Security Act to include primary and 

secondary preventative medical strategies for children and adults with 

Sickle Cell Disease as medical assistance under the Medicaid Program, 

and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

APRIL 10, 2003

Mr. DAVIS of Illinois (for himself, Mr. BURR, Mr. SHIMKUS, and Mr. RUSH) 

introduced the following bill; which was referred to the Committee on Energy and Commerce 

A BILL

To amend title XIX of the Social Security Act to include 

primary and secondary preventative medical strategies 

for children and adults with Sickle Cell Disease as medical assistance under the Medicaid Program, and for 

other purposes.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Sickle Cell Treatment 

5 Act of 2003’’. 

6 SEC. 2. FINDINGS. 

7 Congress makes the following findings: 
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1 (1) Sickle Cell Disease (in this section referred 

2 to as ‘‘SCD’’) is an inherited disease of red blood 

3 cells that is a major health problem in the United 

4 States. 

5 (2) Approximately 70,000 Americans have SCD 

6 and approximately 1,800 American babies are born 

7 with the disease each year. SCD also is a global 

8 problem with close to 300,000 babies born annually 

9 with the disease. 

10 (3) In the United States, SCD is most common 

11 in African-Americans and in those of Hispanic, Med12 iterranean, and Middle Eastern ancestry. Among 

13 newborn American infants, SCD occurs in approxi14 mately 1 in 300 African-Americans, 1 in 36,000 

15 Hispanics, and 1 in 80,000 Caucasians. 

16 (4) More than 2,500,000 Americans, mostly Af17 rican-Americans, have the sickle cell trait. These 

18 Americans are healthy carriers of the sickle cell gene 

19 who have inherited the normal hemoglobin gene 

20 from 1 parent and the sickle gene from the other 

21 parent. A sickle cell trait is not a disease, but when 

22 both parents have the sickle cell trait, there is a 1 

23 in 4 chance with each pregnancy that the child will 

24 be born with SCD. 
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1 (5) Children with SCD may exhibit frequent 

2 pain episodes, entrapment of blood within the spleen, 

3 severe anemia, acute lung complications, and 

4 priapism. During episodes of severe pain, spleen en5 largement, or acute lung complications, life threat6 ening complications can develop rapidly. Children 

7 with SCD are also at risk for septicemia, meningitis, 

8 and stroke. Children with SCD at highest risk for 

9 stroke can be identified and, thus, treated early with 

10 regular blood transfusions for stroke prevention. 

11 (6) The most feared complication for children 

12 with SCD is a stroke (either overt or silent) occur13 ring in 30 percent of the children with sickle cell 

14 anemia prior to their 18th birthday and occurring in 

15 infants as young as 18 months of age. Students with 

16 SCD and silent strokes may not have any physical 

17 signs of such disease or strokes but may have a 

18 lower educational attainment when compared to chil19 dren with SCD and no strokes. Approximately 60 

20 percent of students with silent strokes have difficulty 

21 in school, require special education, or both. 

22 (7) Many adults with SCD have acute prob23 lems, such as frequent pain episodes and acute lung 

24 complications that can result in death. Adults with 

25 SCD can also develop chronic problems, including 
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1 pulmonary disease, pulmonary hypertension, degen2 erative changes in the shoulder and hip joints, poor 

3 vision, and kidney failure. 

4 (8) The average life span for an adult with 

5 SCD is the mid-40s. While some patients can re6 main without symptoms for years, many others may 

7 not survive infancy or early childhood. Causes of 

8 death include bacterial infection, stroke, and lung, 

9 kidney, heart, or liver failure. Bacterial infections 

10 and lung injuries are leading causes of death in chil11 dren and adults with SCD. 

12 (9) As a complex disorder with multisystem 

13 manifestations, SCD requires specialized comprehen14 sive and continuous care to achieve the best possible 

15 outcome. Newborn screening, genetic counseling, and 

16 education of patients and family members are crit17 ical preventative measures that decrease morbidity 

18 and mortality, delaying or preventing complications, 

19 in-patient hospital stays, and increased overall costs 

20 of care. 

21 (10) Stroke in the adult SCD population com22 monly results in both mental and physical disabil23 ities for life. 

24 (11) Currently, one of the most effective treat25 ments to prevent or treat an overt stroke or a silent 
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1 stroke for a child with SCD is at least monthly blood 

2 transfusions throughout childhood for many, and 

3 throughout life for some, requiring removal of sickle 

4 blood and replacement with normal blood. 

5 (12) With acute lung complications, trans6 fusions are usually required and are often the only 

7 therapy demonstrated to prevent premature death. 

8 SEC. 3. INCLUSION OF PRIMARY AND SECONDARY PRE9 VENTATIVE MEDICAL STRATEGIES FOR CHIL10 DREN AND ADULTS WITH SICKLE CELL DIS11 EASE AS MEDICAL ASSISTANCE UNDER THE 

12 MEDICAID PROGRAM. 

13 (a) IN GENERAL.—Section 1905 of the Social Secu14 rity Act (42 U.S.C. 1396d) is amended—

15 (1) in subsection (a)—

16 (A) by striking ‘‘and’’ at the end of para17 graph (26); 

18 (B) by redesignating paragraph (27) as 

19 paragraph (28); and 

20 (C) by inserting after paragraph (26), the 

21 following: 

22 ‘‘(27) subject to subsection (x), primary and 

23 secondary preventative medical strategies, including 

24 prophylaxes, and treatment and services for individ25 uals who have Sickle Cell Disease; and’’; and
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1 (2) by adding at the end the following: 

2 ‘‘(x) For purposes of subsection (a)(27), the strate3 gies, treatment, and services described in that subsection 

4 include the following: 

5 ‘‘(1) Chronic blood transfusion (with 

6 deferoxamine chelation) to prevent stroke in individ7 uals with Sickle Cell Disease who have been identi8 fied as being at high risk for stroke. 

9 ‘‘(2) Genetic counseling and testing for individ10 uals with Sickle Cell Disease or the sickle cell trait. 

11 ‘‘(3) Other treatment and services to prevent 

12 individuals who have Sickle Cell Disease and who 

13 have had a stroke from having another stroke.’’. 

14 (b) FEDERAL REIMBURSEMENT FOR EDUCATION

15 AND OTHER SERVICES RELATED TO THE PREVENTION

16 AND TREATMENT OF SICKLE CELL DISEASE.—Section 

17 1903(a)(3) of the Social Security Act (42 U.S.C. 

18 1396b(a)(3)) is amended—

19 (1) in subparagraph (D), by striking ‘‘plus’’ at 

20 the end and inserting ‘‘and’’; and 

21 (2) by adding at the end the following: 

22 ‘‘(E) 50 percent of the sums expended with 

23 respect to costs incurred during such quarter as 

24 are attributable to providing—
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1 ‘‘(i) services to identify and educate 

2 individuals who have Sickle Cell Disease or 

3 who are carriers of the sickle cell gene, in4 cluding education regarding how to iden5 tify such individuals; or 

6 ‘‘(ii) education regarding the risks of 

7 stroke and other complications, as well as 

8 the prevention of stroke and other com9 plications, in individuals who have Sickle 

10 Cell Disease; plus’’. 

11 (c) EFFECTIVE DATE.—The amendments made by 

12 this section take effect on the date of enactment of this 

13 Act and apply to medical assistance and services provided 

14 under title XIX of the Social Security Act (42 U.S.C. 

15 1396 et seq.) on or after that date, without regard to 

16 whether final regulations to carry out such amendments 

17 have been promulgated by such date. 

18 SEC. 4. DEMONSTRATION PROGRAM FOR THE DEVELOP19 MENT AND ESTABLISHMENT OF SYSTEMIC 

20 MECHANISMS FOR THE PREVENTION AND 

21 TREATMENT OF SICKLE CELL DISEASE. 

22 (a) AUTHORITY TO CONDUCT DEMONSTRATION PRO23 GRAM.—

24 (1) IN GENERAL.—The Administrator, through 

25 the Bureau of Primary Health Care and the Mater-
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1 nal and Child Health Bureau, shall conduct a dem2 onstration program by making grants to up to 40 el3 igible entities for each fiscal year in which the pro4 gram is conducted under this section for the purpose 

5 of developing and establishing systemic mechanisms 

6 to improve the prevention and treatment of Sickle 

7 Cell Disease, including through—

8 (A) the coordination of service delivery for 

9 individuals with Sickle Cell Disease; 

10 (B) genetic counseling and testing; 

11 (C) bundling of technical services related 

12 to the prevention and treatment of Sickle Cell 

13 Disease; 

14 (D) training of health professionals; and 

15 (E) identifying and establishing other ef16 forts related to the expansion and coordination 

17 of education, treatment, and continuity of care 

18 programs for individuals with Sickle Cell Dis19 ease. 

20 (2) GRANT AWARD REQUIREMENTS.—

21 (A) GEOGRAPHIC DIVERSITY.—The Ad22 ministrator shall, to the extent practicable, 

23 award grants under this section to eligible enti24 ties located in different regions of the United 

25 States. 
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1 (B) PRIORITY.—In awarding grants under 

2 this section, the Administrator shall give pri3 ority to awarding grants to eligible entities that 

4 are—

5 (i) Federally-qualified health centers 

6 that have a partnership or other arrange7 ment with a comprehensive Sickle Cell Dis8 ease treatment center that does not receive 

9 funds from the National Institutes of 

10 Health; or 

11 (ii) Federally-qualified health centers 

12 that intend to develop a partnership or 

13 other arrangement with a comprehensive 

14 Sickle Cell Disease treatment center that 

15 does not receive funds from the National 

16 Institutes of Health. 

17 (b) ADDITIONAL REQUIREMENTS.—An eligible entity 

18 awarded a grant under this section shall use funds made 

19 available under the grant to carry out, in addition to the 

20 activities described in subsection (a)(1), the following ac21 tivities: 

22 (1) To facilitate and coordinate the delivery of 

23 education, treatment, and continuity of care for indi24 viduals with Sickle Cell Disease under—
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1 (A) the entity’s collaborative agreement 

2 with a community-based Sickle Cell Disease or3 ganization or a nonprofit entity that works with 

4 individuals who have Sickle Cell Disease; 

5 (B) the Sickle Cell Disease newborn 

6 screening program for the State in which the 

7 entity is located; and 

8 (C) the maternal and child health program 

9 under title V of the Social Security Act (42 

10 U.S.C. 701 et seq.) for the State in which the 

11 entity is located. 

12 (2) To train nursing and other health staff who 

13 specialize in pediatrics, obstetrics, internal medicine, 

14 or family practice to provide health care and genetic 

15 counseling for individuals with the sickle cell trait. 

16 (3) To enter into a partnership with adult or 

17 pediatric hematologists in the region and other re18 gional experts in Sickle Cell Disease at tertiary and 

19 academic health centers and State and county health 

20 offices. 

21 (4) To identify and secure resources for ensur22 ing reimbursement under the medicaid program, 

23 State children’s health insurance program, and other 

24 health programs for the prevention and treatment of 

25 Sickle Cell Disease, including the genetic testing of 
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1 parents or other appropriate relatives of children 

2 with Sickle Cell Disease and of adults with Sickle 

3 Cell Disease. 

4 (c) NATIONAL COORDINATING CENTER.—

5 (1) ESTABLISHMENT.—The Administrator shall 

6 enter into a contract with an entity to serve as the 

7 National Coordinating Center for the demonstration 

8 program conducted under this section. 

9 (2) ACTIVITIES DESCRIBED.—The National Co10 ordinating Center shall—

11 (A) collect, coordinate, monitor, and dis12 tribute data, best practices, and findings re13 garding the activities funded under grants made 

14 to eligible entities under the demonstration pro15 gram; 

16 (B) develop a model protocol for eligible 

17 entities with respect to the prevention and 

18 treatment of Sickle Cell Disease; 

19 (C) develop educational materials regard20 ing the prevention and treatment of Sickle Cell 

21 Disease; and 

22 (D) prepare and submit to Congress a 

23 final report that includes recommendations re24 garding the effectiveness of the demonstration 
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1 program conducted under this section and such 

2 direct outcome measures as—

3 (i) the number and type of health care 

4 resources utilized (such as emergency room 

5 visits, hospital visits, length of stay, and 

6 physician visits for individuals with Sickle 

7 Cell Disease); and 

8 (ii) the number of individuals that 

9 were tested and subsequently received ge10 netic counseling for the sickle cell trait. 

11 (d) APPLICATION.—An eligible entity desiring a 

12 grant under this section shall submit an application to the 

13 Administrator at such time, in such manner, and con14 taining such information as the Administrator may re15 quire. 

16 (e) DEFINITIONS.—In this section: 

17 (1) ADMINISTRATOR.—The term ‘‘Adminis18 trator’’ means the Administrator of the Health Re19 sources and Services Administration. 

20 (2) ELIGIBLE ENTITY.—The term ‘‘eligible enti21 ty’’ means a Federally-qualified health center, a non22 profit hospital or clinic, or a university health center 

23 that provides primary health care, that—

24 (A) has a collaborative agreement with a 

25 community-based Sickle Cell Disease organiza-
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1 tion or a nonprofit entity with experience in 

2 working with individuals who have Sickle Cell 

3 Disease; and 

4 (B) demonstrates to the Administrator 

5 that either the Federally-qualified health center, 

6 the nonprofit hospital or clinic, the university 

7 health center, the organization or entity de8 scribed in subparagraph (A), or the experts de9 scribed in subsection (b)(3), has at least 5 

10 years of experience in working with individuals 

11 who have Sickle Cell Disease. 

12 (3) FEDERALLY-QUALIFIED HEALTH CEN13 TER.—The term ‘‘Federally-qualified health center’’ 

14 has the meaning given that term in section 

15 1905(l)(2)(B) of the Social Security Act (42 U.S.C. 

16 1396d(l)(2)(B)). 

17 (f) AUTHORIZATION OF APPROPRIATIONS.—There is 

18 authorized to be appropriated to carry out this section, 

19 $10,000,000 for each of fiscal years 2004 through 2009.

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