H.R. 1736House108th Congress (2003-2005)In Committee

Sickle Cell Treatment Act of 2003

Introduced April 10, 2003

Legislative Activity

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3 earlier actions
HouseIntro Referral Latest Action

Sponsor introductory remarks on measure. (CR H9003)

September 30, 2003

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HouseIntro Referral

Introduced in House

April 10, 2003

HouseIntro Referral

Referred to the House Committee on Energy and Commerce.

April 10, 2003

HouseCommittee

Referred to the Subcommittee on Health.

April 24, 2003

HouseIntro Referral

Sponsor introductory remarks on measure. (CR H9003)

September 30, 2003

Floor Debate

23 members

What members said about H.R. 1736 on the floor

9 Republicans14 Democrats
Mary L. Landrieu
Sen. Mary L. LandrieuD-LA · Oct 11, 2004

Madam President, under the agreement last night I have up to 30 minutes to speak, and I will be happy to yield additional time to Senator Boxer at a later time because I most certainly want to…

Chuck Grassley
Sen. Chuck GrassleyR-IA · Oct 11, 2004

Mr. President, I am glad that Senator Frist and other Senators were able to work out the parliamentary maneuvering that it takes to get us to finality on this JOBS bill. We obviously want to…

Olympia J. Snowe
Sen. Olympia J. SnoweR-ME · Oct 11, 2004

Mr. President, I rise today to express support for this conference report on the American Jobs Creation Act of 2004. At the outset, I commend Finance Committee Chairman Grassley and Ways and Means…

John McCain
Sen. John McCainR-AZ · Oct 11, 2004

Mr. President, I voted against cloture on this measure yesterday because it is loaded with corporate pork and special interest tax provisions. This conference report, at 633 pages and $148 billion,…

Dianne Feinstein
Sen. Dianne FeinsteinD-CA · Oct 11, 2004

Mr. President, I will vote against this FSC/ETI conference report and I want to explain why. The original purpose of this legislation was simple and clear--to bring the United States into compliance…

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Richard J. Durbin
Sen. Richard J. DurbinD-IL · Oct 11, 2004

Mr. President, this legislation began as a modest effort to repeal an illegal export subsidy. It has grown to 633 pages with nearly $140 billion in corporate tax breaks over the next decade. The…

Jack Reed
Sen. Jack ReedD-RI · Oct 11, 2004

Mr. President, this week, a conference committee filed its report on legislation that was originally designed to repeal provisions in the tax code that have been found by the World Trade Organization…

Barbara Boxer
Sen. Barbara BoxerD-CA · Oct 11, 2004

Madam President, I send my deepest condolences to the family of Christopher Reeve, one of the bravest Americans, who fought so hard to prove that even with the most horrific injuries, one could still…

Jim Talent
Sen. Jim TalentR-MO · Feb 24, 2004

Mr. President, I rise today to honor Black History Month by supporting the Sickle Cell Treatment Act, which is S. 874, and inviting my colleagues to join me and my chief cosponsor, Senator Schumer,…

Carl Levin
Sen. Carl LevinD-MI · Oct 11, 2004

Mr. President, I voted for the Senate version of this FSC/ ETI legislation. While I had a number of misgivings about that bill, those were outweighed by my concerns over the crisis in our Nation's…

Don Nickles
Sen. Don NicklesR-OK · Oct 11, 2004

I yield myself 5 minutes. Mr. President, I want to make a couple of comments on the bill and a couple of comments on the amendment which has been discussed by Senator Landrieu and Senator Boxer. On…

Max Baucus
Sen. Max BaucusD-MT · Oct 11, 2004

I yield 1 minute to the Senator from Louisiana. I yield myself such time as I consume. Mr. President, I first thank the chairman of our committee, Chuck Grassley, for the tremendous job he has done.…

Mitch McConnell
Sen. Mitch McConnellR-KY · Oct 11, 2004

Mr. President, today is a truly historic day for my State, the Commonwealth of Kentucky. Burley tobacco production has been a part of our way of life going back to 1792 when Kentucky joined the…

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John D. Rockefeller IV
Sen. John D. Rockefeller IVD-WV · Oct 11, 2004

Mr. President, on behalf of all hard working West Virginians who are worried about keeping their jobs, I must oppose the corporate tax bill the Senate is considering today. For more than a year, I…

Russell D. Feingold
Sen. Russell D. FeingoldD-WI · Oct 11, 2004

Mr. President, I will support this conference report, but I do so with a great deal of reluctance. One of the more frequently used phrases voiced on the Senate floor is that we must not let the…

Jim Bunning
Sen. Jim BunningR-KY · Oct 11, 2004

Mr. President, I rise today to bring attention to section 852 of the conference report of H.R. 4520 before us today. First, I thank the managers of the conference report for accepting my amendment…

Kay Bailey Hutchison
Sen. Kay Bailey HutchisonR-TX · Oct 11, 2004

Thank you, Mr. President. I thank the Senator from Iowa, the distinguished chairman of the committee. I also thank the chairman and ranking member of the Finance Committee for working with the House…

Trent Lott
Sen. Trent LottR-MS · Oct 11, 2004

Mr. President, I thank the distinguished chairman of the Finance Committee for yielding me this time. When we look back on the results of this year, the legislation that had the greatest impact, this…

Danny K. Davis
Rep. Danny K. DavisD-IL-7 · Sep 30, 2003

Madam Speaker, I rise in recognition of National Sickle Cell Awareness Month. This inherited, debilitating blood disorder affects more than 2.5 million Americans, most of them of African heritage. In…

Patrick J. Leahy
Sen. Patrick J. LeahyD-VT · Oct 11, 2004

Mr. President, the tax bill conference report that will overwhelmingly pass the Senate today is an opportunity lost. This bill is a fiscally irresponsible giveaway full of hundreds of special…

John B. Breaux
Sen. John B. BreauxD-LA · Oct 11, 2004

I was going to talk about the tax bill, but after the kind words of both the distinguished ranking member and my colleague from Louisiana, just let me say a very sincere thank you to both for their…

Christopher J. Dodd
Sen. Christopher J. DoddD-CT · Oct 11, 2004

Mr. President, there are a few of us who would like to be heard on different subject matters. Maybe we could work out some arrangement so we don't have to wait around. I have about 20 minutes to…

Harry Reid
Sen. Harry ReidD-NV · Oct 11, 2004

I announce that the Senator from North Dakota (Mr. Dorgan), the Senator from North Carolina (Mr. Edwards), the Senator from Florida (Mr. Graham), the Senator from South Carolina (Mr. Hollings), the…

Bill Text

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Introduced in HouseIssued April 10, 2003
        [Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1736 Introduced in House (IH)]

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.

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.
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