[Congressional Record Volume 149, Number 58 (Thursday, April 10, 2003)]
[Senate]
[Pages S5199-S5201]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. TALENT (for himself, Mr. Schumer, and Mr. Graham of South 
        Carolina):
  S. 874. 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; to the Committee on 
Finance.
  Mr. TALENT. Mr. President, today I rise on behalf of myself and my 
colleagues, Senators Charles Schumer and Lindsey Graham, in support of 
the Sickle Cell Treatment Act of 2003, which will help hundreds of 
thousands of people who suffer from Sickle Cell Disease. SCD, a genetic 
disease that affects red blood cells. This bill has bipartisan and 
bicameral support, as Representatives Danny K. Davis, a Democrat, and 
Richard Burr, a Republican, will introduce the companion bill today.
  Sickle Cell Disease is an inherited blood disorder that is a major 
health problem in the United States, primarily affecting African 
Americans. People with sickle cell disease have red blood cells that 
contain an abnormal type of hemoglobin. Sometimes these red blood cells 
become sickle-shaped--crescent shaped--and have difficulty passing 
through small blood vessels. When sickle-shaped cells block small blood 
vessels, less blood can reach that part of the body. Tissue that does 
not receive a normal blood flow eventually becomes damaged. This is 
what essentially causes the potentially life-threatening complications 
of sickle cell disease. There is currently no cure.
  More than 2,500,000 Americans, mostly African Americans, have the 
sickle cell trait. Among newborn American infants, SCD occurs in 
approximately 1, in 300 African Americans. The most feared complication 
for children with SCD is a stroke, which may affect infants as young as 
18 months of age. While some patients can remain without symptoms for 
years, many others may not survive infancy or early childhood.
  Many adults with SCD have severe physical problems, such as acute 
lung complications that can result in death. Adults with SCD can also 
develop chronic problems, including pulmonary disease, pulmonary 
hypertension, and kidney failure. The average life span for an adult 
with SCD is the mid-40s. Stroke in the adult SCD population commonly 
results in both mental and physical disabilities for life.
  The Sickle Cell Treatment Act of 2003 helps combat SCD by providing 
Federal matching funds for SCD-related services under Medicaid, and by 
allowing States to receive a Federal 50-50 match for nonmedical 
expenses related to SCD treatment such as genetic counseling. This bill 
also authorizes a grant program in the amount of $10 million per year 
for 5 years to fund 40 health centers nationwide. Although I will go 
into detail about the bill, its focus is to encourage States to partner 
with SCD providers, who have historically been on the frontlines of 
this issue, to treat and find a cure for SCD patients.
  With regard to the Federal matching funds, this bill allows states to 
reimburse SCD services beyond current Medicaid law, which only covers 
physician and laboratory services. For example, if a State wanted to 
increase reimbursement rates for SCD blood transfusions, it could do so 
through rate setting for the new SCD benefit without having to increase 
reimbursement for all Medicaid blood transfusions, therefore, making it 
easier for a State to reimburse at a higher rate for SCD-related 
treatment.

  The bill also provides Federal reimbursement for education and other 
services related to the prevention and treatment of SCD. This will 
allow States to get a Federal 50-50 match for nonmedical, 
administrative expenses to include outreach and genetic counseling 
about SCD and its treatment for SCD patients of any age. This is 
critical to helping this historically underserved population, many of 
who may not know about SCD or its symptoms until it is too late.
  This bill also allows hospitals and clinics to do outreach with non-
medical personnel to educate high-risk communities about recognizing 
SCD. It would also allow nonmedical personnel like counselors to spend 
time with SCD families to discuss how to manage the disease. Providing 
this one-stop shop will centralize SCD-related treatment and counseling 
services to better serve those with SCD.
  In addition to the diagnosis and treatment components, this bill 
creates a grant program for 40 health centers nationally. Specifically, 
the U.S. Department of Health and Human Services is authorized to 
distribute grants to up to 40 eligible health centers nationwide for $5 
million for the next 5 fiscal years. Grants may be used for purposes 
including the education, treatment--i.e., genetic counseling and 
testing--and continuity of care for individuals with SCD, for training 
health professionals, and to identify and secure additional Federal 
funds to continue SCD treatment.
  This bill also creates a National Coordinating Center to collect, 
monitor and distribute information on new and innovative practices to 
prevent and treat SCD, establish a model protocol for the grant 
recipients to follow as a quality control mechanism, develop 
educational materials regarding the prevention and treatment of SCD, 
and submit a report to Congress to ensure fiscal accountability and 
provide information of recent developments towards a cure for SCD.
  The Sickle Cell Treatment Act of 2003 provides tremendous benefits to 
States. The approach taken in this bill is to add services related to 
SCD to the list of services covered by Medicaid for those people who 
are eligible for Medicaid under current eligibility rules.

[[Page S5200]]

For example, the bill allows States to use Medicaid funds to work with 
providers to better serve areas with a high prevalence of SCD in fields 
such as education and counseling,which are currently not reimbursed by 
Medicaid. This bill also allows the States to create opportunities to 
partner with providers to determine ``best practices'' to encourage the 
most effective and efficient use of medical resources toward SCD 
treatment and education.
  In introducing the Sickle Cell Treatment Act of 2003, we are trying 
to help thousands of Americans who live with this disease. This 
legislation will provide many of these patients with access to the 
essential treatments that they need. It has the support of many 
important groups representing the SCD, African-American and children's 
health care communities as well as the providers and researchers who 
are working to treat and find a cure for this disease. For example, 
Allan Platt, Program Coordinator, The Georgia Comprehensive Sickle Cell 
Center at Grady Health System in Atlanta, GA has written me the 
following letter, which states in part, ``You did a wonderful thing for 
sickle cell patients and for those who are caring for them. Let us know 
how we can rally support for this.''
  I want to offer my appreciation to the Sickle Cell Disease 
Association of American Inc., SCDAA, for its vigilant efforts to help 
find a cure for SCD, and working with my office to help craft this 
critical piece of legislation. SCDAA President and Chief Operating 
Officer, Lynda K. Anderson, has provided tireless support on behalf of 
this effort. Also I would like to acknowledge the efforts of SCDAA 
Board Member Michael R. DeBaun, M.D., M.P.H, Assistant Professor of 
Pediatrics and Biostatistics at the Washington University School of 
Medicine in St. Louis, MO. Lynda and Michael have brought the issues 
addressed in this bill to my attention and helped to bring the 
introduction of this bill to fruition.
  The SCDAA was founded in 1971 to provide an effective coordinated 
community-based approach to developing and implementing strategies to 
resolve issues surrounding sickle cell disease. Through three decades, 
SCDAA and its member organizations have demonstrated how community-
based organizations and comprehensive health and research centers can 
work with local, State and Federal agencies in furtherance of national 
health care objectives. To this day, SCDAA continues to pursue 
legislative initiatives to secure additional government funding for 
research and community-based services. Moreover, it has demonstrated 
its capacity to provide continued leadership in this area as a 
potential national coordinator center, and I look forward to the 
organization applying for such a designation, once this measure has 
been enacted into law. My colleagues and I on both sides of the aisle 
and in both legislative bodies look forward to working with SCDAA to 
fight this good fight and to secure the resources required to address 
the very unique needs of patients, families and communities affected by 
SCD.
  I ask that my colleagues in the Senate join Senators Schumer and 
Graham, and Representatives Davis and Burr in helping us to find a cure 
to help the approximately 70,000 Americans who have SCD and the 
approximately 1,800 American babies who are born with this disease each 
year in supporting the Sickle Cell Treatment Act of 2003.
  I ask unanimous consent that the text of the bill printed in the 
Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                 S. 874

       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

[[Page S5201]]

     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.
                                 ______