Senators Jim Talent and Charles Schumer have introduced the bipartisan, bicameral "Sickle Cell I Treatment Act of 2003" (S. 874/H.R.1736). This bill currently has ~ Senate cosponsors as well as the I support of the Congressional Black Caucus and many other health, children's, church, union and African- American groups. This legislation will help treat Sickle Cell Disease patients, who are primarily African- Americans, and increase the number of services available to them.
- Increasing Access to Affordable, Quaality Health Care. Provides funding to currently eligible Medicaid recipients for physician and laboratory services targeted to SCD that are not currently reimbursed or are under-reimbursed by Medicaid.
-Enhancing Services Available to SCD PPatients. Allows 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.
- Creating 40 SCD Treatment Centers./b> Authorizes an annual $10 million grant program for five
years to create 40 treatment centers that will provide medical treatment, education and other services for SCD patients.
- Establishing a Sickle Cell Disease RResearch Headquarters. Creates a National Coordinating
Center, operated by the U.S. Department of Health and Human Services, to coordinate and oversee the SCD funding and research conducted at hospitals, universities and community-based organizations.
- Importantly, this disease managementt bill does not increase the number of Medicaid eligibles and the federal Medicaid match will stay the same.
- More than 2.5 million Americans, mostlyy African Americans, have the sickle cell trait. - Approximately 70.000 Americans have Sickle Cell Disease.
- Sickle Cell Disease Association of Amerrica .American Medical Association
- Sickle Cell Disease occurs in approximaately 1 in 300 African-American newborns.
- The most feared complication for childrren with this disease is a stroke, which may affect
infants as young as 18 months. Some patients may not survive infancy or early childhood.
- Many adults with Sickle Cell Disease haave severe physical problems, such as acute lung complications that can result in death.
- The average life span for an adult withh Sickle Cell Disease is 45 years.
- National Medical Association (African-AAmerican Doctors' Association) .American Hospital Association
- National Association of Children's Hosppitals
- Association of Maternal and Child Healtth Programs .National Association of Community Health Centers
- National Association for the Advancemennt of Colored People