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.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Sickle Cell Treatment Act of 2003''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Sickle Cell Disease (in this section referred to as 
        ``SCD'') is an inherited disease of red blood cells that is a 
        major health problem in the United States.
            (2) Approximately 70,000 Americans have SCD and 
        approximately 1,800 American babies are born with the disease 
        each year. SCD also is a global problem with close to 300,000 
        babies born annually with the disease.
            (3) In the United States, SCD is most common in African-
        Americans and in those of Hispanic, Mediterranean, and Middle 
        Eastern ancestry. Among newborn American infants, SCD occurs in 
        approximately 1 in 300 African-Americans, 1 in 36,000 
        Hispanics, and 1 in 80,000 Caucasians.
            (4) More than 2,500,000 Americans, mostly African-
        Americans, have the sickle cell trait. These Americans are 
        healthy carriers of the sickle cell gene who have inherited the 
        normal hemoglobin gene from 1 parent and the sickle gene from 
        the other parent. A sickle cell trait is not a disease, but 
        when both parents have the sickle cell trait, there is a 1 in 4 
        chance with each pregnancy that the child will be born with 
        SCD.
            (5) Children with SCD may exhibit frequent pain episodes, 
        entrapment of blood within the spleen, severe anemia, acute 
        lung complications, and priapism. During episodes of severe 
        pain, spleen enlargement, or acute lung complications, life 
        threatening complications can develop rapidly. Children with 
        SCD are also at risk for septicemia, meningitis, and stroke. 
        Children with SCD at highest risk for stroke can be identified 
        and, thus, treated early with regular blood transfusions for 
        stroke prevention.
            (6) The most feared complication for children with SCD is a 
        stroke (either overt or silent) occurring in 30 percent of the 
        children with sickle cell anemia prior to their 18th birthday 
        and occurring in infants as young as 18 months of age. Students 
        with SCD and silent strokes may not have any physical signs of 
        such disease or strokes but may have a lower educational 
        attainment when compared to children with SCD and no strokes. 
        Approximately 60 percent of students with silent strokes have 
        difficulty in school, require special education, or both.
            (7) Many adults with SCD have acute problems, such as 
        frequent pain episodes and acute lung complications that can 
        result in death. Adults with SCD can also develop chronic 
        problems, including pulmonary disease, pulmonary hypertension, 
        degenerative changes in the shoulder and hip joints, poor 
        vision, and kidney failure.
            (8) The average life span for an adult with SCD is the mid-
        40s. While some patients can remain without symptoms for years, 
        many others may not survive infancy or early childhood. Causes 
        of death include bacterial infection, stroke, and lung, kidney, 
        heart, or liver failure. Bacterial infections and lung injuries 
        are leading causes of death in children and adults with SCD.
            (9) As a complex disorder with multisystem manifestations, 
        SCD requires specialized comprehensive and continuous care to 
        achieve the best possible outcome. Newborn screening, genetic 
        counseling, and education of patients and family members are 
        critical preventative measures that decrease morbidity and 
        mortality, delaying or preventing complications, in-patient 
        hospital stays, and increased overall costs of care.
            (10) Stroke in the adult SCD population commonly results in 
        both mental and physical disabilities for life.
            (11) Currently, one of the most effective treatments to 
        prevent or treat an overt stroke or a silent 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, transfusions are 
        usually required and are often the only therapy demonstrated to 
        prevent premature death.

SEC. 3. INCLUSION OF PRIMARY AND SECONDARY PREVENTATIVE MEDICAL 
              STRATEGIES FOR CHILDREN AND ADULTS WITH SICKLE CELL 
              DISEASE AS MEDICAL ASSISTANCE UNDER THE MEDICAID PROGRAM.

    (a) In General.--Section 1905 of the Social Security Act (42 U.S.C. 
1396d) is amended--
            (1) in subsection (a)--
                    (A) by striking ``and'' at the end of paragraph 
                (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 individuals who have Sickle Cell 
        Disease; and''; and
            (2) by adding at the end the following:
    ``(x) For purposes of subsection (a)(27), the strategies, 
treatment, and services described in that subsection include the 
following:
            ``(1) Chronic blood transfusion (with deferoxamine 
        chelation) to prevent stroke in individuals with Sickle Cell 
        Disease who have been identified as being at high risk for 
        stroke.
            ``(2) Genetic counseling and testing for individuals 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, including 
                        education regarding how to identify such 
                        individuals; or
                            ``(ii) education regarding the risks of 
                        stroke and other complications, as well as the 
                        prevention of stroke and other complications, 
                        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 DEVELOPMENT AND ESTABLISHMENT OF 
              SYSTEMIC MECHANISMS FOR THE PREVENTION AND TREATMENT OF 
              SICKLE CELL DISEASE.

    (a) Authority To Conduct Demonstration Program.--
            (1) In general.--The Administrator, through the Bureau of 
        Primary Health Care and the Maternal and Child Health Bureau, 
        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, 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 efforts 
                related to the expansion and coordination of education, 
                treatment, and continuity of care programs for 
                individuals with Sickle Cell Disease.
            (2) Grant award requirements.--
                    (A) Geographic diversity.--The Administrator shall, 
                to the extent practicable, award grants under this 
                section to eligible entities located in different 
                regions of the United States.
                    (B) Priority.--In awarding grants under this 
                section, the Administrator shall give priority to 
                awarding grants to eligible entities that are--
                            (i) Federally-qualified health centers that 
                        have a partnership or other arrangement with a 
                        comprehensive Sickle Cell Disease 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 activities:
            (1) To facilitate and coordinate the delivery of education, 
        treatment, and continuity of care for individuals with Sickle 
        Cell Disease under--
                    (A) the entity's collaborative agreement with a 
                community-based Sickle Cell Disease organization 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 regional experts in 
        Sickle Cell Disease at tertiary and academic health centers and 
        State and county health offices.
            (4) To identify and secure resources for ensuring 
        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 Coordinating Center 
        shall--
                    (A) collect, coordinate, monitor, and distribute 
                data, best practices, and findings regarding the 
                activities funded under grants made to eligible 
                entities under the demonstration program;
                    (B) develop a model protocol for eligible entities 
                with respect to the prevention and treatment of Sickle 
                Cell Disease;
                    (C) develop educational materials regarding the 
                prevention and treatment of Sickle Cell Disease; and
                    (D) prepare and submit to Congress a final report 
                that includes recommendations regarding 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 genetic 
                        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 containing such information as the Administrator 
may require.
    (e) Definitions.--In this section:
            (1) Administrator.--The term ``Administrator'' means the 
        Administrator of the Health Resources and Services 
        Administration.
            (2) Eligible entity.--The term ``eligible entity'' means a 
        Federally-qualified health center, a nonprofit 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 organization 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 described in subparagraph (A), 
                or the experts described in subsection (b)(3), has at 
                least 5 years of experience in working with individuals 
                who have Sickle Cell Disease.
            (3) Federally-qualified health center.--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.

Summary: Sickle Cell Treatment Act of 2003 - Amends title XIX (Medicaid) of the Social Security Act (SSA) to include primary and secondary preventative medical strategies, treatment, and services, including genetic counseling and testing, for individuals who have Sickle Cell Disease as medical assistance under the Medicaid program. Directs the Administrator of the Health Resources and Services Administration to conduct a demonstration program for the development and establishment of systemic mechanisms, including a National Coordinating Center, to improve the prevention and treatment of Sickle Cell Disease.