NCDHHS’ Sickle Cell Syndrome Program (NCSCSP) celebrated its 50th Anniversary on May 23 at the NC Museum of Art in Raleigh. The event was well attended by community trailblazers, community supporters, NCSCSP staff, sickle cell medical center staff, individuals and family members living with sickle cell disease, and NCDHHS officials.
On May 18, 1973, House Bill 32 created the Council on Sickle Cell Syndrome and the North Carolina Sickle Cell Syndrome Program to provide education, testing and counseling for sickle cell syndrome and related disorders. The sponsors of House Bill 32 were Former Senator Henry E. Frye, Henry “Mickey” Michaux and Representative Joy Johnson. In 1975, three additional bills were also passed that prohibited discrimination against persons with sickle cell trait regarding health insurance, life insurance and employment.
Sickle cell disease is a group of conditions that affect hemoglobin, which allows red blood cells to carry oxygen to all parts of the body. Red blood cells that contain sickle hemoglobin are inflexible and can stick to blood vessel walls, causing a blockage that slows or stops blood flow.
When this happens, oxygen cannot reach tissues, leading to sudden, severe pain. Poor oxygen delivery can damage the brain, spleen, eyes, lungs, liver and multiple other organs. All tissues within the body are at risk for damage because of the obstruction of blood flow.
Through its network of regional sickle cell educator counselors and case managers, the NCSCSP implements a systematic, statewide approach to service delivery. The program provides infants, children, adolescents, and adults affected by sickle cell disease with newborn screening follow-up, care coordination, referrals to clinical and related services, access to a reimbursement program to assist with medical services for eligible patients, and sickle cell educational materials and information. The program also offers trait counseling for individuals and families in our state.
The 50th Anniversary celebration honored those who significantly contributed to raising awareness of sickle cell syndrome through the establishment of programs and services for individuals with sickle cell disease, sickle cell traits and related disorders. Retired Senators Henry E. Frye and Henry “Mickey” Michaux received legislative awards for their work to create a program in 1973 that has helped so many during the past 50 years. Other awards were given to community trailblazers, supporters and staff members.
As sickle cell disease affects typically underserved populations and is a prime example of racial inequality in healthcare settings, the NCSCSP is committed to providing quality care and services to "Bring Hope and a Brighter Future" to those living with sickle cell disease and their families. Learn more about the NC Sickle Cell Syndrome Program. Additional events are planned to commemorate this major milestone.