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About / Mission / Legislative Initiatives

Legislative Initiatives

Since 2002 SCDAA has worked with Congressional champions to authorize and fund a number of national SCD legislative programs. These programs provide support for patients suffering from SCD, while encouraging enhanced research intended to identify next-generation treatments and a cure for SCD.

History

Advocacy Update

The Sickle Cell Anemia Control Act was first signed into law in 1972 by President Richard Nixon. In 1971, President Nixon pledged that his Administration would “reverse the record of neglect on the dreaded disease”. Ten million was provided to expand sickle cell disease programs in fiscal year 1972, with a goal of increasing funding in 1973 and expanding SCD-related activities at the Veterans Administration. Over 30 years later, the Sickle Cell Treatment Act of 2003 (SCTA) was signed into law under President George Bush. Working with leaders on Capitol Hill, SCDAA is proud to have initiated and led grassroots efforts to draft and secure passage of the SCTA. With the help of original co-sponsors Senator James Talent (R-MO), Senator Charles Schumer (D-NY), Senator Richard Burr (R-NC) and Representative Danny Davis (D-IL), the legislation was successfully enacted as an amendment to the American Jobs Creation Act of 2004 (P.L. 108-357).

Summary of Authorization

Sickle Cell Treatment Act (SCTA)

There are four main components of the SCTA -

  • Provides for funding to currently eligible Medicaid recipients for physician and laboratory services targeted to SCD that are not currently reimbursed or under-reimbursed by Medicaid;
  • Permits States to receive a federal 50-50 funding match for non-medical expenses related to SCD treatment such as genetic counseling, community outreach, education and other services. Each state has the discretion to approve;
  • Creates 40 SCD Treatment centers. Authorizes an annual $10 million competitive grant program for five years to create 40 treatment centers at Federally Qualified Health Centers (FQHC) that provide medical treatment, education and other services for SCD patients; and
  • Establishes a National Coordinating and Evaluation Center (NCEC) operated by the U.S. Department of Health and Human Services (HHS) to coordinate and oversee the SCD funding and research, including the collection, monitoring and distribution of information on best practices related to managing SCD among persons older than five years of age.
    Importantly, this disease management bill does not increase Medicaid patient eligibility and the federal Medicaid match stays the same.
  • Improved quality of care for SCD patients;
  • Increased primary care access points, patients served, and services provided.

While this work is progressing, the reach and scope of current activities suffer significantly from underfunding as the national level. SCDAA and its member organizations have noted many States have not moved to implement expanded Medicaid reimbursement provisions authorized within the SCTA. As a result, outstanding needs still far outpace available services. Since its enactment, SCDAA has worked diligently with Congressional champions to advocate for full authorized funding to support the legislation by means of annual appropriations. Throughout this time, full implementation of SCTA programs has received broad based community and bipartisan legislative support. Unfortunately, despite this great support, the authorized programs have never been fully funded by Congress.

Requested Funding: $13 million

The Sickle Cell Disease and Newborn Screening Program (SCD-NBS)

Authorization of the Sickle Cell Disease and Newborn Screening Program (SCD-NBS) funded through the Maternal Child Health Block Grant, Special Projects of Regional and National Significance (SPRANS) account to ensure continued funding of the newborn screening programs and its objectives; newly authorized activities should be matched by expanded federal resources, and should not impinge upon currently authorized funding. Working with Congressional champions in both the House and Senate, SCDAA has pursued the authorization of the SCD-NBS by means of an amendment to the Sickle Cell Treatment Act (P.L. 108-357). In addition to this broad authorization strategy, SCDAA recommends the following modifications to existing law governing newborn screening activities;

  • Amend the Title V MCH Block Grant program to require that state newborn screening programs link with (and fund if necessary) SCD-related community-based organizations to ensure SCD and SCT follow-up and maintenance of care of affected patients;
  • Ensure that HRSA has authority to allocate resources to support the publication and dissemination of educational materials and counselor certification programs that have been developed in the SCD-NBS from 2011 through 2015 and can implement this through its current Cooperative Agreement with the NCEC.
  • Seek funding for state NBS programs to ensure adequate transition of young children and their families who have been supported through NBS follow-up programs into systems of care for older children and adolescents suffering from SCD.

Requested Funding: $6.5 million

Hemoglobinopathy Registry

SCDAA seeks the authorization of a Hemoglobinopathy Registry and Surveillance System at CDC, funded through the National Center for Preparedness, Detection, and Control of Infectious Diseases (Division of Healthcare Quality Promotion). The goal of this initiative is to establish a Hemoglobinopathies Data System (HDS) that will be used to describe the epidemiology and clinical characteristics of SCD, thalassemia, and other hemoglobin disorders in the U.S. This data can be used for research, information dissemination, policy decisions, and health care planning at the local, state, and national levels.

Requested Funding: $40 million over 5 years

Sickle Cell Disease Global Support Initiative

SCDAA proposes an enhanced partnership with the federal government to begin to provide essential care to SCD patients throughout the world. In particular, as efforts are undertaken by the U.S. government to address issues of international development and global public health, SCDAA advocates for the inclusion of SCD-related issues in such efforts. Proposed provisions will support (1) efforts that help to assess scope and impact of SCD; (2) the establishment of an interagency committee to coordinate U.S. government work, and (3) training and technical assistance.

Requested Funding: $10 million

Recent Developments

In 2005, the National Heart Lung and Blood Institute (NHLBI) initiated the creation of a sickle cell disease clinical research network (SCD-CRN) via a request for Applications process (RFA-HL-05-006). The purpose of this initiative was to establish a network of up to 15 clinical centers, designed to perform multiple therapeutic trials to improve treatment options for patients with SCD; and to establish a Data Coordinating Center (DCC) for the network. In addition, one or two Patient Outcomes Research Cores (PORCs) were to be funded. The NHLBI committed $4 million (total costs) in FY2006 and $36 million (total costs) over a 5-year period to support the SCD-CRN. The SCD-CRN was eventually established in April 2006 for a five-year period.

Requested Action:
SCDAA supports research programs underway at the NIH and recommends that Congress provide an additional $40 million (over 5 years) to support the SCD-CRN. Additional funding will allow the CRN to reach and engage a sufficient number of institutions and participants, so that meaning research can be generated. Although the recent establishment of the SCD-CRN is encouraging the federal government must remain vigilant in the infancy of the SCD-related effort, to guarantee that the same degree of success will be observed within this program. There is a need to ensure that the research translates into effective care for individuals in the sickle cell disease community. This is best addressed by expanded SCD-CRNs with closer ties to community based organizations.

Advocacy Day on Capitol Hill

Each year in the spring SCDAA hosts Advocacy Day where we encourage our member organizations, friends and supporters of sickle cell disease to join us to speak to federal legislative representatives about our federal initiatives to educate them and also ask for their support for continued funding. This is your chance to speak directly to your representatives and tell personal stories about the impact of this disease. The SCDAA initiatives provide federal dollars to local sickle cell disease organizations through competitive grants. SCDAA only receives administrative costs from the coordinating centers in charge of administering the grants.

In addition to the organized Advocacy Day in the spring we encourage you to visit your legislative offices anytime that you are in the Washington D.C. area. The more visible sickle cell disease advocates are, the better we are positioned to continue to receive federal dollars. With each federal election we may be in danger of losing our champions which means we have to continue to educate to create new champions.

Would you like yo know more about legislation that support sickle cell research and program efforts? Visit our Advocacy page to learn more and check our Calendar of Events for information about the upcoming Advocacy Day.

Sickle Cell World Day

On December 22, 2008 the sixty third general assembly of the United Nations approved a draft resolution that would recognize sickle cell anemia as a public health priority. The draft was introduced by Raymond Sege Bale (Congo) who said that sickle cell was relatively unknown by the general public, yet the World Health Organization (WHO) estimates that sickle cell anemia affects nearly 100 million people throughout the world and if not treated in its early stages was most likely fatal. Bale stated that "adoption of this resolution would pull sickle cell anemia out of its medical ghetto and draw the world’s attention to the disease". He also welcomed the fact that June 19th would be the day to raise public awareness of sickle cell anemia at national and international levels. A revision was made during consultations and 'public health priority' was changed to read "public health problem". The Assembly adopted the resolution as orally revised without a vote.

The first annual Sickle Cell World Day was recognized on June 19th in New York at the United Nations with speakers from many countries. The United Nations location allowed for translation of the entire event. SCDAA was well represented. For information about the next Sickle Cell World Day, visit the Calender of Events.

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