Get Full Government Meeting Transcripts, Videos, & Alerts Forever!
Get email alerts on the Public Health topic
No spam. Unsubscribe anytime.
Sickle Cell Oversight Commission asks for continued funding as caseloads and testing expand
Summary
The Sickle Cell Oversight and Regulatory Commission told the Sunset Committee it needs sustained or increased funding to expand screening, counseling and services as diagnosed and tested cases in Alabama have risen since 2002.
The Alabama Sickle Cell Oversight and Regulatory Commission told the Sunset Committee the number of Alabamians living with sickle cell disease has increased since 2002 and that centers and community‑based organizations need sustained funding to meet screening, counseling and education demands.
"We now have over 2 times as many individuals living with sickle cell disease in Alabama now when compared to 2002," Vice President Dr. Artie Packnabian said. The commission cited 2020 surveillance data estimating about 4,000 individuals in Alabama with sickle cell disease compared with roughly 2,500 in 2002 and noted the Alabama Department of Public Health’s newborn screening program diagnoses 50 to 60 newborns annually.
Commission members said demand for trait testing and counseling has grown because of rules such as NCAA athletic screening and broader public awareness. Vice President Packnabian said the board funds three medical centers — University of South Alabama, University of Alabama at Birmingham and Children’s of Alabama — and six community‑based organizations (Central Alabama, West Alabama, Greater Montgomery, Southeast Alabama, Mobile and North Alabama) that provide testing, counseling and outreach.
Commission staff addressed a procedural finding about a contract and RFP timeline. Executive Director Keith Warren told the committee "the contract is current, and will be renewed timely," and said staff worked through two RFP cycles with the attorney general’s office and procurement before the September expiration. Warren and commissioners said they have since corrected posting and contract timing issues: "since May 2022, we are in compliance with all postings for members." Committee members pressed the commission on emergency contracts and report delivery; commissioners said they had scrutinized proposals and sought more competitive responses before renewing services.
Commissioners emphasized education and community outreach. A community representative said community‑based organizations counsel parents of infants identified with trait and maintain referral rates for babies with disease. The commission said target performance goals include counseling 80% of parents of infants identified with sickle cell trait and providing referrals for babies diagnosed with disease.
No formal budget action occurred during the hearing. Commissioners asked for continued legislative support to sustain and expand services to meet growing testing and counseling demand.
