Executive Summary
Approximately 122,000 Americans live with Sickle Cell Disease (SCD), which is a heritable disease that can have severely debilitating effects. While there is no cure, many of the symptoms can be mitigated, and research on treatments are ongoing. Six bills have been introduced in the 2022 legislative session in Missouri related to SCD (SB 1145, SB 1147, SCR 35, HB 2559, HB 2653, and HB 2658). The proposed legislation seeks to designate awareness weeks, as well as require MO HealthNet to conduct an annual review of the medications and treatments, including novel therapies and educational programs, most effective for MO HealthNet beneficiaries with SCD.
Highlights
- Roughly 2,500 Missourians live with SCD, which can cause stroke, kidney problems, heart problems, acute chest pain, and overall debilitating pain.
- Patients with SCD often report life disruptions in education and employment due to the need for medical attention, leading to depression, anxiety, despair, insomnia, helplessness, and greater dependency on medications.
- Treatment regimens to maintain overall health include acute and chronic symptom management, and regular prescription use of hydroxyurea.
- Newer treatments are under continued study and may allow children born since the mid-2000s to have a higher chance of reaching their 40s and 50s.
- Federal laws have been passed to improve research, treatments, and approved projects to test and improve patient outcomes.
- Several states have historically passed anti-discrimination laws against healthcare coverage determinations or employment and added support measures for patients and families.
Limitations
- Funding for SCD from both public and private sectors is generally lower than other comparable diseases, and newer treatments still need extensive study.
