Sickle Cell Legislative News

This page will summarize current legislation that is important to sicklecell patients and family members.  If you would like to obtain a monthly e-mail newsletter about the latest website changes and sickle cell news, send an e-mail request to aplatt@emory.edu  For the latest news, visit  this page that  is updated weekly at www.scinfo.org/news.htm

The sickle cell community has a wonderful opportunity to improve the care of individuals with sickle cell disease in the United States. Senator Jim Talent (R-MO), Senator Charles Schumer (D-NY), Representative Danny K. Davis (D-Il-7), and Representative Richard Burr (R-NC-5 have introduced a bill entitled "Sickle Cell Disease Treatment Act of 2003"(S. 874/H.R. 1736) with broad bipartisan support. I encourage you all to read the bill and consider contacting your Senators and Representatives and ask that they support this important initiative.

If these bills pass and become law, there is the potential to greatly improve the availability of care for individuals with sickle cell disease. Many patients with sickle cell disease across this great country are not fortunate enough to live near one of the 10 NIH Comprehensive Sickle Cell Centers or the other sickle cell centers with expertise in patient care, research, and education. A true partnership between the centers of treatment and research excellence, federally funded community primary care clinics, and community based sickle cell programs can lead to a care delivery system that provides excellent care to patients, psychosocial support to patients and their families, opportunities to participate in innovative new clinical research projects, community and professional education, and counseling services. Indeed, a number of very innovative initiatives have already resulted from small amounts of funding provided to improve the follow-up of infants detected in newborn screening programs. Many of these projects partner sickle cell care centers with community based organizations with expertise in providing health services to underserved communities.

We must all work together to increase the services for all individuals with sickle cell disease and their families. Once funding is available, the sickle community must come together and explore new partnerships to improve individuals’ health care and psychological and social support. Research networks should result that provide improved care by universal access and innovative clinical research. New paradigms in community and professional education should be explored to improve understanding, reduce discrimination, and increase access to quality services.

I hope that the sickle cell community can come together with one voice to support this important legislation and capitalize on the opportunity to improve the care of all individuals with sickle cell disease in the United States. The 21^st century offers almost unlimited potential to improve the well being of our patients and their families if we seize the moment.

James R. Eckman

May 2006 -

HRSA Announces Sickle Cell Demonstration Grants to Carry out Sickle Cell Treatment Act  http://www.hrsa.gov/grants/default.htm -  The grants will be awarded to 4 regional sickle cell “collaborative networks” in the amount of $300,000 a year for four years. 

April 7, 2006  Sickle Cell Funding Letter signed -  Senators Talent, Schumer and Burr provided support during African American Health Month by authoring a letter requesting $4 million in the FY07 Labor/H Appropriations bill to create 40 treatment centers to provide medical treatment and education services for patients living with sickle cell disease* pursuant to grants provided in P.L. 108-357. Several Senators signed the letter by April 7, 2006 requesting the funding.   Click Here to see a PDF file of the letter

December 21, 2005 -  SENATE APPROVES TALENT-COCHRAN REQUEST FOR $2.2 MILLION TO FUND SICKLE CELL TREATMENT LAW

(WASHINGTON, DC) U.S. Senators Jim Talent (R-Mo.) and Thad Cochran (R-Miss.) have won approval for a $2.2 million appropriation to help patients with Sickle Cell Disease.

The funding, which passed tonight as part of the Labor, HHS, Education Appropriations Act, will go to a new grant program created by Senators Talent and Charles Schumer (D-N.Y.) in the Sickle Cell Disease Treatment Act (Public Law 108-357).

"The first step was enacting a comprehensive bill to help patients with Sickle Cell Disease, now we are focused on funding. I’ve had the opportunity to meet with many of these patients and their families. I’ve been inspired by their stories as well as their optimism that we will one day find a cure."

"I was pleased to work with Sen. Talent to include funding in the Labor, HHS, Education appropriations bill for medical centers with programs dedicated to treating and preventing Sickle Cell Anemia," said Sen. Cochran. "This funding will help in efforts to improve medical treatments for this serious blood disorder."

The Sickle Cell Treatment grants will be administered by the Department of Health and Human Services which will award the funding to Centers of Excellence around the country that specialize in Sickle Cell Disease treatment and research. The funding will be used for medical treatment, education and other health care services for sickle cell patients.

Sickle Cell Disease affects approximately 70,000 Americans; more than 2,500,000 Americans, mostly African-Americans, have the Sickle Cell trait. Sickle Cell Disease affects about one in 300 African-American newborns.

The Senate first approved the Talent-Cochran request in October as an amendment to the Labor, HHS, Education Appropriations Act. With final passage today, the request will soon be signed into law by the President. Last year, Sen. Talent secured nearly $200,000 in initial funding for the Sickle Cell Treatment grant program. With tonight’s action, $2.2 million will now be appropriated to help those struggling with Sickle Cell Disease.

December 19, 2005 - Congress Passes $300 Million+ Cord Blood Stem Cell Bill - President Bush will Sign

Congressman Chris Smith WASHINGTON, DC,  (LifeSiteNews.com) - On Saturday, the House of Representatives voted to pass HR 2520 - the Stem Cell Therapeutic and Research Act - written by Rep. Chris Smith (R-NJ). The non-controversial legislation had earlier passed the House of Representatives in May by a vote of 431-1 and was slightly altered before passage by the Senate Friday night. The bill will now be signed into law by President Bush.

Umbilical cords are a rich, non-controversial source of stem cells. Currently hospitals throw millions of them away each year because the infrastructure required to properly collect and store them is not available. When signed into law by President Bush, the bill will increase the number of cord blood units and cord blood stem cells available for treating patients and research will greatly increase.

"We will now be able to turn medical waste - umbilical cords and placentas - into medical miracles for huge numbers of very sick and terminally ill patients, who suffer from such maladies as leukemia and sickle cell anemia," said Smith. http://www.lifesite.net/ldn/2005/dec/05121902.html

SENATE PASSES COCHRAN-TALENT AMENDMENT TO ADD FUNDS FOR SICKLE CELL TREATMENT - Thursday, October 27, 2005 Contact: Rich Chrismer Tel: (202) 224-4812 Cell: (202) 309-8644

(WASHINGTON, D.C.) The Senate today approved an amendment offered by U.S. Senator Thad Cochran, and co-sponsored by Senator Jim Talent (R-Mo.), to add $2 million to the Sickle Cell Disease Treatment grant program, created by Senators Talent and Charles Schumer (D-N.Y.), which helps patients suffering from the blood disorder. The Cochran-Talent measure passed unanimously as part of the Labor-HHS Appropriations Act.

“This is a very important amendment which helps reduce health disparities throughout the United States,” said Sen. Talent. “I can’t emphasize enough how much this amendment means to the community of people affected by Sickle Cell Disease – not just the 70,000 Americans that have it, not just the 2.5 million Americans who have the trait, but their families and friends who struggle every day with this disease.”

The amendment adds $12 million to the underlying appropriations bill to help reduce health disparities in underserved communities, including $2 million to help treat patients with Sickle Cell Disease. The money for Sickle Cell Treatment helps fund a new grant program which was enacted into law as part of Senators Talent and Schumer’s Sickle Cell Treatment Law (Public Law 108-357).

The Sickle Cell Treatment grants will be administered by the new Centers for Excellence created under the Talent-Schumer law. The funding will be used for medical treatment, education and other health care services for sickle cell patients. 

Sickle Cell Treatment Act Progress - 3/4/05 Please go to the American Society of Hematology  website and send the automatic email letter to your State Senator and Representative. You may adapt the letter on line to personalize it to you. The template was written for physician hematologists. This excellent program will automatically email your letter for you to your Members of Congress urging support for at least $10 million for the Sickle Cell Disease Act. Here is a link to it: http://ga4.org/ashgrassroots/home.html

Feb 15,2005  - Sickle Cell Treatment Act Progress -Attached is a PDF copy of a letter "Dear Colleague" that Senators Talent, Schumer and Burr are circulating to request appropriations funding for the Sickle Cell Treatment Act (in P.L. 108-357). Last year $200,000 was appropriated to establish a demonstration program and a National Coordinating Center created by the Sickle Cell Treatment Act (in P.L. 108-357). We expect the details of this program (including how to apply for funding) to be release in the Spring. This year, we are asking the Appropriators for at least $10 million for grants to create 40 treatment centers that will provide medical treatment, education and other services for sickle cell disease patients. 

We need your grassroots support to contact their Senators to ask that they sign the sickle cell funding letter to Appropriations/Health Subcommittee Chairman Specter (R-PA) and Ranking Member Harkin (D-IA).

The  following are the Senators who have agreed thus far to sign the appropriations letter to fund the sickle cell disease program. We appreciate your grassroots advocacy (calls/letters) to your members' Senators to collect at least 10 more signatures. The more Senators who sign the appropriation letter the greater our chances of funding the
program. Thank you for your continued support

Senators agreed to sign the letter:
Jim Talent (R-MO)
Chuck Schumer (D-NY)
Richard Burr (R-NC)
George Allen (R-VA)
Kit Bond (R-MO)
Barbara Boxer (D-CA)
Jon Corzine (D-NJ)
Mary Landrieu (D-LA)
Mark Pryor (D-AR)
Rick Santorum (R-PA)
Debbie Stabenow (D-MI)

The National Conference of State Legislatures - Minority Health Legislation:  Sickle Cell Anemia http://www.ncsl.org/programs/health/sickle.htm

Friday October 22, 2004 - President Bush signed the American Jobs Creation Act (H.R. 4520), which contains the sickle cell amendment, into law this morning. 

You can find the final wording of the bill by searching the document;
sickle cell is section 712:
http://waysandmeans.house.gov/media/pdf/hr4520/hr4520confreptlegtext.pdf

Details of the implementation  will come from the Centers for Medicare & Medicaid Services (CMS) http://www.cms.hhs.gov/default.asp?  and Health Resources and Services Administration ( HRSA) http://www.hrsa.gov/  through rule making over the next several months.

Many, many  thanks go out to all of the supporters, legislators, medical providers, organizations, patients and family members who helped this law to to pass. A very special thanks to Missouri Senator Jim Talent and Legislative Counsel Faith Cristol who started this process and carried it through to the signing. May the lives of all sickle cell patients benefit from this seed sown. - The staff at www.SCInfo.org

The exact wording in the Bill (the numbers are line numbers on each page for reference}

SEC. 712. INCLUSION OF PRIMARY AND SECONDARY MED- 16

ICAL STRATEGIES FOR CHILDREN AND 17

ADULTS WITH SICKLE CELL DISEASE AS MED- 18

ICAL ASSISTANCE UNDER THE MEDICAID 19

PROGRAM. 20

(a) OPTIONAL MEDICAL ASSISTANCE.— 21

(1) IN GENERAL.—Section 1905 of the Social 22

Security Act (42 U.S.C. 1396d) is amended— 23

(A) in subsection (a)— 24

(i) by striking ‘‘and’’ at the end of 1

paragraph (26); 2

(ii) by redesignating paragraph (27) 3

as paragraph (28); and 4

(iii) by inserting after paragraph (26), 5

the following: 6

‘‘(27) subject to subsection (x), primary and 7

secondary medical strategies and treatment and 8

services for individuals who have Sickle Cell Disease; 9

and’’; and 10

(B) by adding at the end the following: 11

‘‘(x) For purposes of subsection (a)(27), the strate- 12

gies, treatment, and services described in that subsection 13

include the following: 14

‘‘(1) Chronic blood transfusion (with 15

deferoxamine chelation) to prevent stroke in individ- 16

uals with Sickle Cell Disease who have been identi- 17

fied as being at high risk for stroke. 18

‘‘(2) Genetic counseling and testing for individ- 19

uals with Sickle Cell Disease or the sickle cell trait 20

to allow health care professionals to treat such indi- 21

viduals and to prevent symptoms of Sickle Cell Dis- 22

ease. 23

‘‘(3) Other treatment and services to prevent 1

individuals who have Sickle Cell Disease and who 2

have had a stroke from having another stroke.’’. 3

(2) RULE OF CONSTRUCTION.—Nothing in sub- 4

sections (a)(27) or (x) of section 1905 of the Social 5

Security Act (42 U.S.C. 1396d), as added by para- 6

graph (1), shall be construed as implying that a 7

State medicaid program under title XIX of such Act 8

could not have treated, prior to the date of enact- 9

ment of this Act, any of the primary and secondary 10

medical strategies and treatment and services de- 11

scribed in such subsections as medical assistance 12

under such program, including as early and periodic 13

screening, diagnostic, and treatment services under 14

section 1905(r) of such Act. 15

(b) FEDERAL REIMBURSEMENT FOR EDUCATION 16

AND OTHER SERVICES RELATED TO THE PREVENTION 17

AND TREATMENT OF SICKLE CELL DISEASE.—Section 18

1903(a)(3) of the Social Security Act (42 U.S.C. 19

1396b(a)(3)) is amended— 20

(1) in subparagraph (D), by striking ‘‘plus’’ at 21

the end and inserting ‘‘and’’; and 22

(2) by adding at the end the following: 23

‘‘(E) 50 percent of the sums expended with 1

respect to costs incurred during such quarter as 2

are attributable to providing— 3

‘‘(i) services to identify and educate 4

individuals who are likely to be eligible for 5

medical assistance under this title and who 6

have Sickle Cell Disease or who are car- 7

riers of the sickle cell gene, including edu- 8

cation regarding how to identify such indi- 9

viduals; or 10

‘‘(ii) education regarding the risks of 11

stroke and other complications, as well as 12

the prevention of stroke and other com- 13

plications, in individuals who are likely to 14

be eligible for medical assistance under 15

this title and who have Sickle Cell Disease; 16

plus’’. 17

(c) DEMONSTRATION PROGRAM FOR THE DEVELOP- 18

MENT AND ESTABLISHMENT OF SYSTEMIC MECHANISMS 19

FOR THE PREVENTION AND TREATMENT OF SICKLE 20

CELL DISEASE.— 21

(1) AUTHORITY TO CONDUCT DEMONSTRATION 22

PROGRAM.— 23

(A) IN GENERAL.—The Administrator, 24

through the Bureau of Primary Health Care 25

and the Maternal and Child Health Bureau, 1

shall conduct a demonstration program by mak- 2

ing grants to up to 40 eligible entities for each 3

fiscal year in which the program is conducted 4

under this section for the purpose of developing 5

and establishing systemic mechanisms to im- 6

prove the prevention and treatment of Sickle 7

Cell Disease, including through— 8

(i) the coordination of service delivery 9

for individuals with Sickle Cell Disease; 10

(ii) genetic counseling and testing; 11

(iii) bundling of technical services re- 12

lated to the prevention and treatment of 13

Sickle Cell Disease; 14

(iv) training of health professionals; 15

and 16

(v) identifying and establishing other 17

efforts related to the expansion and coordi- 18

nation of education, treatment, and con- 19

tinuity of care programs for individuals 20

with Sickle Cell Disease. 21

(B) GRANT AWARD REQUIREMENTS.— 22

(i) GEOGRAPHIC DIVERSITY.—The 23

Administrator shall, to the extent prac- 24

ticable, award grants under this section to 25

eligible entities located in different regions 1

of the United States. 2

(ii) PRIORITY.—In awarding grants 3

under this subsection, the Administrator 4

shall give priority to awarding grants to el- 5

igible entities that are— 6

(I) Federally-qualified health cen- 7

ters that have a partnership or other 8

arrangement with a comprehensive 9

Sickle Cell Disease treatment center 10

that does not receive funds from the 11

National Institutes of Health; or 12

(II) Federally-qualified health 13

centers that intend to develop a part- 14

nership or other arrangement with a 15

comprehensive Sickle Cell Disease 16

treatment center that does not receive 17

funds from the National Institutes of 18

Health. 19

(2) ADDITIONAL REQUIREMENTS.—An eligible 20

entity awarded a grant under this subsection shall 21

use funds made available under the grant to carry 22

out, in addition to the activities described in para- 23

graph (1)(A), the following activities: 24

(A) To facilitate and coordinate the deliv- 1

ery of education, treatment, and continuity of 2

care for individuals with Sickle Cell Disease 3

under— 4

(i) the entity’s collaborative agreement 5

with a community-based Sickle Cell Dis- 6

ease organization or a nonprofit entity that 7

works with individuals who have Sickle Cell 8

Disease; 9

(ii) the Sickle Cell Disease newborn 10

screening program for the State in which 11

the entity is located; and 12

(iii) the maternal and child health 13

program under title V of the Social Secu- 14

rity Act (42 U.S.C. 701 et seq.) for the 15

State in which the entity is located. 16

(B) To train nursing and other health 17

staff who provide care for individuals with Sick- 18

le Cell Disease. 19

(C) To enter into a partnership with adult 20

or pediatric hematologists in the region and 21

other regional experts in Sickle Cell Disease at 22

tertiary and academic health centers and State 23

and county health offices. 24

(D) To identify and secure resources for 1

ensuring reimbursement under the medicaid 2

program, State children’s health insurance pro- 3

gram, and other health programs for the pre- 4

vention and treatment of Sickle Cell Disease. 5

(3) NATIONAL COORDINATING CENTER.— 6

(A) ESTABLISHMENT.—The Administrator 7

shall enter into a contract with an entity to 8

serve as the National Coordinating Center for 9

the demonstration program conducted under 10

this subsection. 11

(B) ACTIVITIES DESCRIBED.—The Na- 12

tional Coordinating Center shall— 13

(i) collect, coordinate, monitor, and 14

distribute data, best practices, and findings 15

regarding the activities funded under 16

grants made to eligible entities under the 17

demonstration program; 18

(ii) develop a model protocol for eligi- 19

ble entities with respect to the prevention 20

and treatment of Sickle Cell Disease; 21

(iii) develop educational materials re- 22

garding the prevention and treatment of 23

Sickle Cell Disease; and 24

(iv) prepare and submit to Congress a 1

final report that includes recommendations 2

regarding the effectiveness of the dem- 3

onstration program conducted under this 4

subsection and such direct outcome meas- 5

ures as— 6

(I) the number and type of 7

health care resources utilized (such as 8

emergency room visits, hospital visits, 9

length of stay, and physician visits for 10

individuals with Sickle Cell Disease); 11

and 12

(II) the number of individuals 13

that were tested and subsequently re- 14

ceived genetic counseling for the sickle 15

cell trait. 16

(4) APPLICATION.—An eligible entity desiring a 17

grant under this subsection shall submit an applica- 18

tion to the Administrator at such time, in such man- 19

ner, and containing such information as the Admin- 20

istrator may require. 21

(5) DEFINITIONS.—In this subsection: 22

(A) ADMINISTRATOR.—The term ‘‘Admin- 23

istrator’’ means the Administrator of the 24

Health Resources and Services Administration. 25

(B) ELIGIBLE ENTITY.—The term ‘‘eligible 1

entity’’ means a Federally-qualified health cen- 2

ter, a nonprofit hospital or clinic, or a univer- 3

sity health center that provides primary health 4

care, that— 5

(i) has a collaborative agreement with 6

a community-based SickleCell Disease or- 7

ganization or a nonprofit entity with expe- 8

rience in working with individuals who 9

have Sickle Cell Disease; and 10

(ii) demonstrates to the Administrator 11

that either the Federally-qualified health 12

center, the nonprofit hospital or clinic, the 13

university health center, the organization 14

or entity described in clause (i), or the ex- 15

perts described in paragraph (2)(C), has at 16

least 5 years of experience in working with 17

individuals who have Sickle Cell Disease. 18

(C) FEDERALLY-QUALIFIED HEALTH CEN- 19

TER.—The term ‘‘Federally-qualified health 20

center’’ has the meaning given that term in sec- 21

tion 1905(l)(2)(B) of the Social Security Act 22

(42 U.S.C. 1396d(l)(2)(B)). 23

(6) AUTHORIZATION OF APPROPRIATIONS.— 24

There is authorized to be appropriated to carry out 25

this subsection, $10,000,000 for each of fiscal years 1

2005 through 2009. 2

(d) EFFECTIVE DATE.—The amendments made by 3

subsections (a) and (b) take effect on the date of enact- 4

ment of this Act and apply to medical assistance and serv- 5

ices provided under title XIX of the Social Security Act 6

August 2004 - Washington DC August 11, 2004 - A call to action -  The Sickle Cell Treatment Act (S. 874/H.R. 1736) passed the Senate as an amendment to the international tax bill the “JOBS Act” (S. 1637). The companion bill that passed the House did not contain a sickle cell amendment. The Senate recently named “Conferees” to a committee that will reconcile the differences between the Senate and House-passed bills. With your help, we are hopeful that the final package to emerge from the conference will include the sickle cell amendment. This package will be voted on for final approval by the House and the Senate (it will be the same bill) and, if passed, will be signed into law by President Bush.

Now is the time for your grassroots advocacy. Write letters to your Senators to retain Section 662 in the final conference package.

ACTION ITEMS

1) Write or download and modify the sample letters to ask Senators to cosponsor S. 874 and contact the conferees to retain Section 662.

Sample letter in MS Word click here:  SCD Senate FSC Let 8-04.doc

2) A letter to Senators who have cosponsored S. 874.

Sample letter in MS Word click here: SCD Cosponsor FSC Let 8-04.doc

3) A letter to the conferees (also attached is a list of conferees).

Sample letter in MS Word click here: Senate FSC Conferee 8-04.doc

Click Here for a list of   all Senate Conferees with their addresses and phone numbers in a Word document.

Since the Senate conference will begin in September, now is the time to send in the letters. Also, we appreciate your members making appointments with their Senators as soon as possible to advocate for issue.

Again, thank you for your continued advocacy. With your help, we are hopeful that this important legislation will pass the Congress and be signed into law.

July 2004  Progress of the Sickle Cell Treatment Act (S. 874/H.R. 1736), which recently passed the Senate as an amendment to international tax legislation (called “FSC/ETI”).  The companion bill that passed the House did not contain a sickle cell amendment. Now, we are waiting for House and Senate leaders to appoint “conferees” to a committee that will be tasked with reconciling the differences between the Senate and House-passed bills. With your help, we are hopeful that the final package to emerge from the conference will include the sickle cell amendment. This package will be voted on for final approval by the House and the Senate (it will be the same bill) and, if passed, will be signed by President Bush into law.

Once we know which House and Senate Members will be named to the conference, at the appropriate time, we will ask for your grassroots advocacy in contacting them to let them know your support for including the sickle cell amendment in the final conference package.

May 12,2004 - Sickle Cell Treatment Act Passes the Senate (S. 874) U.S. SENATE PASSES TALENT’S BILL TO TREAT PATIENTS WITH SICKLE CELL DISEASE

(WASHINGTON, D.C.) The U.S. Senate today passed Senator Jim Talent’s (R-Mo.) Sickle Cell Treatment Act of 2003 (S. 874) to help treat and expand services for patients with the blood disorder that primarily affects African-Americans. Sen. Talent’s legislation passed as part of an amendment to the JOBS Act, FSC/ETI (S. 1637), which was approved by the Senate tonight.

“This is great news for the tens of thousands of Americans with Sickle Cell Disease,” said Talent. “I want to thank Senator Charles Schumer who has been my bipartisan partner in this effort. This is comprehensive health care legislation that will increase funding for treatment and research efforts, expand awareness about the disease and provide additional services for sickle cell disease patients.”

The Sickle Cell Treatment Act would increase health care access for patients by providing federal matching funds for Sickle Cell Disease-related services under Medicaid making it easier for doctors to treat patients with the disease and increasing state funding for physician and laboratory services.. 

The legislation also enhances the number of services available to Sickle Cell Disease patients by allowing states to receive a federal 50-50 funding match for treatment expenses such as genetic counseling, community outreach and education. 

Additionally, the bill creates 40 Sickle Cell Disease Treatment centers across the country and establishes a National Sickle Cell Disease Research Headquarters through the U.S. Department of Health and Human Services. This National Coordinating Center will coordinate the research conducted by health professionals and universities to help educate patients with the goal of finding a comprehensive cure for Sickle Cell Disease.

Sen. Talent’s bipartisan, bicameral Sickle Cell Treatment Act (S. 874/H.R. 1736) currently has 49 Senate and 49 House co-sponsors as well as the support of the American Medical Association, the Congressional Black Caucus (CBC), the NAACP, the Sickle Cell Disease Association of America and many other
groups. 

The FSC/ETI bill with Sen. Talent’s legislation now goes to a conference committee where members will work out differences with the House legislation.. To see the latest news go to http://www.congress.gov and type the bill number (S.874). 

4/28/04 News -TALENT wants law to better fight Sickle Cell Disease  http://www.kansascity.com/mld/kansascity/news/local/8524518.htm?1c

February 25, 2004  - SENATORS TALENT & SCHUMER DISCUSS BILL TO TREAT AND EXPAND SERVICES FOR AMERICANS LIVING WITH SICKLE CELL DISEASE

Announce Major Endorsements Including NAACP, AMA

(WASHINGTON, D.C.) U.S. Senators Jim Talent (R-Mo.) and Charles Schumer (D-N.Y.) today hosted a news conference on Capitol Hill to announce a broad coalition of support for legislation they have introduced to help treat and expand services for Americans with Sickle Cell Disease (SCD), an inherited blood disorder that primarily affects African-Americans. 

Congressmen Danny Davis (D-Ill.-7) and Richard Burr (R-N.C.-5), who have introduced companion legislation in the House, joined the senators in announcing these endorsements. 

At the event, a group of Washington, D.C. area elementary school children presented artwork to the senators and congressmen as a part of an effort to raise awareness of Sickle Cell Disease.

The senators and congressmen announced that many national organizations including the National Association for the Advancement of Colored People (NAACP), the American Medical Association (AMA), the National Medical Association (NMA) and the Sickle Cell Disease Association of America (SCDAA) have endorsed the “Sickle Cell Treatment Act.” 

“I am very pleased to announce this broad coalition of support for this significant health care legislation to help the thousands of patients with Sickle Cell Disease and their families,” said Talent. “I appreciate the support of national organizations such as the NAACP, the American Medical Association and the Children’s Defense Fund for their letters of encouragement.” 

“This bill will provide a major boost for the health care of thousands of people. That’s why it’s getting such bipartisan support and is being backed by so many groups,” said Schumer. “Congress needs to act on this now to improve our efforts to help the thousands of Americans suffering from the disease.”

Sickle Cell Disease affects about one in 300 African-American newborns. It is an inherited defect in blood that causes normally round blood cells to take on a sickle shape. These sickle-shaped cells clog the bloodstream, creating obstructions that result in severe medical complications. The disease affects approximately 70,000 Americans; more than 2,500,000 Americans, mostly African-Americans, have the sickle cell trait. 

Every year, more than 1,800 American babies are born with Sickle Cell Disease. The most feared complication for children with the disease is a stroke, which many infants as young as 18 months of age experience. Some patients remain without symptoms for years, while others may not survive infancy or early childhood.

Adults with Sickle Cell Disease experience severe physical problems, such as acute lung complications, and can develop chronic problems such as pulmonary disease, pulmonary hypertension and kidney failure. The average life span for an adult with Sickle Cell is 45 years.

“Sickle Cell Disease impacts tens of thousands of Americans and their families,” said Talent. “It is a debilitating disease that causes life-threatening health complications for which there is still no cure. In Missouri, we have a number of health professionals who are leading the effort to treat and prevent Sickle Cell Disease; however, there has not been the level of funding or the attention necessary to assist those efforts. This legislation will provide additional federal funding to support treatment and research efforts and help increase health care access for Sickle Cell Disease patients in Missouri and throughout the country.”

“As a New Yorker I’ve seen the impact of Sickle Cell Disease in my home state,” said Schumer.  “While we have known about the dangers of Sickle Cell Disease among African Americans for a long time, new immigration trends in New York - including new immigrants from West Africa - appear to be driving a sharp increase in Sickle Cell Disease in Harlem and other communities in New York.  And the rate of Sickle Cell Disease among infants born at Harlem Hospital has roughly doubled since 1998. We need to do something to stem this increase and we need to do it now.”

The Sickle Cell Treatment Act would increase health care access for patients by providing federal matching funds for Sickle Cell Disease-related services under Medicaid. This makes it easier for doctors to treat patients with Sickle Cell Disease and increases the availability of physician and laboratory services for states. 

The legislation also enhances the number of services available to Sickle Cell Disease patients by allowing states to receive a federal 50-50 funding match for treatment expenses such as genetic counseling, community outreach and education. 

Additionally, the bill creates 40 Sickle Cell Disease Treatment centers across the country and establishes a National Sickle Cell Disease Research Headquarters through the U.S. Department of Health and Human Services. This National Coordinating Center will coordinate the funding and research conducted by health professionals and universities to educate patients and help find a cure for Sickle Cell Disease.

“Supporting the health professionals who are on the frontlines daily and establishing a coordinated research center will help move us closer to finding a cure for Sickle Cell Disease,” Talent said. “I will continue to work with Sen. Schumer and Reps. Davis and Burr to seek additional co-sponsors. I look forward to working with senators on both sides of the aisle and both sides of the Capitol to pass this bill.”

The bipartisan, bicameral “Sickle Cell Treatment Act” (S. 874/H.R. 1736) currently has 41 Senate and 39 House co-sponsors as well as the support of the Congressional Black Caucus (CBC) and many other children’s and African-American groups. This legislation will help treat Sickle Cell Disease patients and fund research toward finding a cure. 

US Senate Bill 874 H. R. 1736 - Sickle Cell Treatment Act of 2003 - Introduced in the US Senate and House April 10, 2003- Missouri Republican Senator Jim Talent is proposing legislation aimed at helping  Sickle Cell Patients across the US.  Mr. TALENT (for himself, Mr. SCHUMER, and Mr. GRAHAM of South Carolina) introduced the bill; which was read twice and referred to the Committee on Finance  April 10, 2003. On the House side the bill was introduced by Mr. DAVIS of Illinois for himself, Mr. BURR, Mr. SHIMKUS, and Mr. RUSH   which was referred to the Committee on Energy and Commerce. This is the first major national legislation to aid those with sickle cell disease in many years. Senator Talent called upon the Senate to "find a cure" for sickle cell by enacting this legislation. This bill does the following:

This would allow states to foster SCD programs and providers in a matter suitable to the particular aspects of SCD, which differs from other illnesses. So, if a state wanted to increase reimbursement rates for SCD blood transfusions, for example, 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.

Under the bill, States could pay for outreach or counseling, or other non-medical services in a variety of ways. Some of those ways could resemble how States pay for medical services, e.g., claim-by-claim for services as they are provided. States might also designate certain entities for the program and give them a kind of up front lump sum payment. The possibilities are numerous and without a whole lot of federal constraints except, of course, that the activity must relate to Medicaid. Thus, it would not be permissible to use the Medicaid money to pay for Public Service Announcements aimed at the general population.

3. Creates New Service Bundle: This allows hospitals and clinics to do outreach with non-medical personnel, educating high-risk communities about recognizing SCD, as well as to allow non-medical personnel like counselors to spend time with SCD families to discuss how to best manage the disease.

4. Creates Grant Programs for 40 Health Centers Nationally: HHS will make grants to up to 40 eligible health centers across the U.S. of $10,000,000 for each fiscal year 2004- 2009. 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.

5. Creates National Coordinating Center: The National Coordinating Center will collect, monitor and distribute information on best practices on the prevention and treatment of SCD; develop 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 written report to Congress to ensure fiscal accountability and provide information of recent developments towards a cure for SCD.

The approach taken in this bill is to add services related to SCD to the list of services covered by Medicaid for those who are eligible for Medicaid under current eligibility rules. Medicaid already covers most of the services in the bill (i.e., under the rubric of "physician services" or "prescribed drugs" or "clinical services", etc.). However, in proposing the new sickle cell specific package of services, the bill allows states to:

1. Combine services to creatively target specific needs of persons with SCD.
2. Offer additional services as part of the sickle cell package that might not be otherwise covered by Medicaid or, if covered, would be hard for the State to restrict coverage for narrow groups.
3. Use Medicaid money 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.
4. Create opportunities for states and providers to partner to determine "best practices" such as the most effective and efficient use of medical resources toward SCD treatment and education.

The bill  asks for $50 million over five years to fund 40 sickle cell health centers nationwide.

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.

What can you do? - contact your Senators and Representative to support this bill -  The Senate Finance Committee has jurisdiction over S. 874, and the House Energy  and Commerce Committee has jurisdiction over H.R. 1736. Calling faxing and writing  your Members of Congress and other Members on the two committees of jurisdiction. Tell them to support this bill and that services should be provided to sickle cell patients across the US.

Bill supporters to date:

* Sickle Cell Disease Association of America
* National Medical Association (African American Doctors'Association)
* National Association of Children's Hospitals
* National Association of Community Health Centers
* Healthcare Leadership Council
* American Society of Hematology
* Missouri Hospital Association
* Missouri Primary Care Association
* The Georgia Comprehensive Sickle Cell Center

Bill Summary word document click here

Senate Finance Committee List click here

Letter from Senators asking support in Adobe pdf format click here

The bill in Adobe pdf format click here

Senate  Bill 874: go to this web page at the US Senate web site and do a search on the key words: sickle cell http://www.senate.gov/pagelayout/legislative/g_three_sections_with_teasers/legislative_home.htm

News http://www.krcg.com/news_details.asp?story_number=3947

The US Senate web site http://www.senate.gov/

The US Senate Finance Committee http://finance.senate.gov/

US House web site http://www.house.gov/

US House Energy Committee Members http://energycommerce.house.gov/108/members/members.htm

Bill Update 7/20/03

Senate supporters

Sen Schumer, Charles E. - 4/10/2003 [NY] 
Sen Graham, Lindsey O. - 4/10/2003 [SC] 
Sen Coleman, Norm - 4/11/2003 [MN] 
Sen Breaux, John B. - 4/29/2003 [LA] 
Sen Hutchison, Kay Bailey - 4/29/2003 [TX] 
Sen Campbell, Ben Nighthorse - 5/1/2003 [CO] 
Sen Dole, Elizabeth H. - 5/1/2003 [NC] 
Sen Shelby, Richard C. - 5/6/2003 [AL] 
Sen Voinovich, George V. - 5/13/2003 [OH] 
Sen Allen, George - 5/19/2003 [VA] 
Sen Chambliss, Saxby - 5/19/2003 [GA] 
Sen Miller, Zell - 5/20/2003 [GA] 
Sen Cochran, Thad - 5/20/2003 [MS] 
Sen Lautenberg, Frank R. - 5/20/2003 [NJ] 
Sen Corzine, Jon - 5/20/2003 [NJ] 
Sen Kennedy, Edward M. - 5/21/2003 [MA] 
Sen Durbin, Richard J. - 5/21/2003 [IL] 
Sen Feinstein, Dianne - 5/22/2003 [CA] 
Sen DeWine, Michael - 5/23/2003 [OH] 
Sen Bond, Christopher S. - 5/23/2003 [MO] 
Sen Lieberman, Joseph I. - 6/4/2003 [CT] 
Sen Kerry, John F. - 6/10/2003 [MA] 

House Supporters

Rep Burr, Richard - 4/10/2003 [NC-5] 
Rep Shimkus, John - 4/10/2003 [IL-19] 
Rep Rush, Bobby L. - 4/10/2003 [IL-1] 
Rep Christensen, Donna M. - 5/13/2003 [VI] 
Rep Jones, Stephanie Tubbs - 5/13/2003 [OH-11] 
Rep Capuano, Michael E. - 5/13/2003 [MA-8] 
Rep Rangel, Charles B. - 5/13/2003 [NY-15] 
Rep Kilpatrick, Carolyn C. - 5/13/2003 [MI-13] 
Rep Brady, Kevin - 5/13/2003 [TX-8] 
Rep Maloney, Carolyn B. - 5/13/2003 [NY-14] 
Rep Payne, Donald M. - 5/13/2003 [NJ-10] 
Rep Owens, Major R. - 5/13/2003 [NY-11] 
Rep Towns, Edolphus - 5/13/2003 [NY-10] 
Rep Millender-McDonald, Juanita - 5/13/2003 [CA-37] 
Rep Jefferson, William J. - 5/13/2003 [LA-2] 
Rep Lee, Barbara - 5/20/2003 [CA-9] 
Rep Clay, Wm. Lacy - 5/20/2003 [MO-1] 
Rep Scott, Robert C. - 5/20/2003 [VA-3] 
Rep Clyburn, James E. - 5/20/2003 [SC-6] 
Rep Watson, Diane E. - 5/20/2003 [CA-33] 
Rep Cummings, Elijah E. - 5/20/2003 [MD-7] 
Rep Jackson-Lee, Sheila - 5/20/2003 [TX-18] 
Rep Norton, Eleanor Holmes - 5/21/2003 [DC] 
Rep Norwood, Charlie - 5/21/2003 [GA-9] 
Rep Engel, Eliot L. - 5/21/2003 [NY-17] 
Rep Wynn, Albert Russell - 5/21/2003 [MD-4] 
Rep Deutsch, Peter - 5/21/2003 [FL-20] 
Rep Green, Gene - 5/21/2003 [TX-29] 
Rep Conyers, John, Jr. - 6/2/2003 [MI-14] 
Rep Davis, Artur - 6/10/2003 [AL-7] 
Rep Brown, Corrine - 6/10/2003 [FL-3] 
Rep Israel, Steve - 6/10/2003 [NY-2] 
Rep Scott, David - 6/10/2003 [GA-13] 
Rep Schakowsky, Janice D. - 6/10/2003 [IL-9] 
Rep Lewis, John - 6/10/2003 [GA-5] 
Rep Fattah, Chaka - 6/19/2003 [PA-2] 
Rep Johnson, Eddie Bernice - 6/19/2003 [TX-30] 

News Updates:

Reuters: http://asia.reuters.com/newsArticle.jhtml?type=healthNews&storyID=2788780

St. Louis Post http://www.stltoday.com/stltoday/news/stories.nsf/news/117AF4B12565DCC286256D2E000EEB1A?OpenDocument&highlight=2%2Cjim%2Ctalent&headline=Bill+would+aid+those+suffering+from+sickle+cell

Sickle Cell Patient Cured by Stem Cell Research the Focus of Senate Hearing Thursday, June 12, 2003  WASHINGTON – U.S. Sen. Sam Brownback today chaired a hearing of the Senate Commerce Science, Technology and Space Subcommittee to examine advances in adult and non-embryonic stem cell research. Patients who have been successfully treated provided their testimony.  http://brownback.senate.gov/record.cfm?id=204966

Genetic Information Nondiscrimination Act of 2003 (S. 1053)

Inspired by the story of the Reed family from St. Louis, who told Senator Talent how they could not get health insurance for their infant daughter with Sickle Cell Disease, today Senator Talent cosponsored the Genetic Information Nondiscrimination Act of 2003 (S. 1053). This bipartisan bill prohibits employers and health insurance companies from discriminating against people based on their genetic histories. The legislation, introduced by Senator Snowe, would also: (1) prevent employers
from using genetic information in hiring and would allow companies to collect such data only to monitor adverse effects resulting from the workplace; and (2) establish new privacy standards for genetic information. This legislation has the support of the Bush Administration and has no cost to the federal government. There is a companion bill in the House of Representatives. 

Senator Joe Lieberman  proposes "Center for Cures," a $150 billion 10 year effort. to find the cure for sickle cell disease and other chronic conditions. http://www.joe2004.com/site/News2?page=NewsArticle&id=5282

H.R.1863 National Pain Care Policy Act of 2003 (Introduced in House)  a bill to improve pain treatment in the US. http://thomas.loc.gov and enter "HR 1863" in the search field for the details and status. 

Search the news for the latest sickle cell  news story at Google news  

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Last modified: May 12, 2006