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.
[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[S. 874 Introduced in Senate (IS)]
108th CONGRESS
1st Session
S. 874
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 SENATE OF THE UNITED STATES
April 10, 2003
Mr. Talent (for himself, Mr. Schumer, and Mr. Graham of South Carolina)
introduced the following bill; which was read twice and referred to the
Committee on Finance
_______________________________________________________________________
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.
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 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.
<all>
Introduced in Senate
Sponsor introductory remarks on measure. (CR S5199-5200)
Read twice and referred to the Committee on Finance. (text of measure as introduced: CR S5200-5201)
Sponsor introductory remarks on measure. (CR S1508-1509)
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