The original Sickle Cell committee or working group was formed in 1976 by a group of concerned citizens that:
Recognized there was no place to contact locally for information about sickle cell disease
The sickle cell test was not a standard physician-offered exam,
The analysis of the test results performed often missed the detection of many clinically significant sickling disorders.
The group began by setting up information tables in malls and offering some testing for sickle cell trait. Initially, the Veteran's Hospital in Birmingham performed the laboratory tests. Volunteers knowledgeable about sickle cell disease provided some counseling and referred individuals to physicians for follow-up. Then in 1978, the group was awarded a federal HEW grant (then known as U.S. Health, Education and Welfare) to establish a community-based sickle cell project for Jefferson County, Alabama. The Jefferson County Sickle Cell Program was established in 1978 to provide free education, testing, counseling, and referral services.
ABOUT
OUR MISSION
Enhancing the quality of life for persons affected with sickle cell trait and disease through education, counseling, and screening, by providing psychosocial support, social services, community awareness and advocacy.
MAKING A DIFFERENCE
Our first Executive Director was Sharon B. Lewis who served for years for the health and well-being of people with sickle cell disease in Central Alabama and beyond.
The Sickle Cell Disease Association of America - Central Alabama Chapter was considered a demonstration project and based on community response; the hope was that local funding would become available. In or around 1983, federal funds for community sickle cell programs were no longer available. Since that time, the Sickle Cell Disease Association of America - Central Alabama Chapter has received funding from the State of Alabama, United Way of Central Alabama, and other community resources. From time to time, limited federal grant funds are received for special projects. Requests for services from surrounding counties caused extensions of the service area during some program years. At one point, as many as 22 central and east Alabama counties received services over the course of the existence of the community-based organization: Bibb, Blount, Calhoun, Cherokee, Chilton, Clay, Cleburne, Coosa, Cullman, Dekalb, Etowah, Fayette, Jefferson, Lamar, Marion, Marshall, Randolph, Shelby, St. Clair, Talladega, Walker, and Winston. Currently, the Sickle Cell Disease Association of America - Central Alabama Chapter in Birmingham serves 13 Central and Eastern Alabama counties. Significant programs and services have been implemented because of the efforts of the Sickle Cell Disease Association of America - Central Alabama Chapter. Years of advocating for Newborn Sickle Cell screening resulted in the Alabama State Department of Health establishing a requirement that all babies born in the state be tested for sickling conditions and sickle cell trait at birth. A comprehensive sickle cell clinic for children operates at Children's Hospital in Birmingham. The agency has also been an advocate for improved care for adults. The Foundation raised 1 million dollars to support the establishment of an adult treatment program at UAB Kirkland Clinic. Through the years the Foundation has provided effective leadership in positioning sickle cell disease and its related problems as a major public health care concern and, indeed a universal problem.
