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Improving Care for Sickle Cell Disease

Medicaid and the Children's Health Insurance Program (CHIP) can play a role in improving health care access and health outcomes for individuals with sickle cell disease. Sickle Cell Disease (SCD) is a lifelong inherited blood disorder that affects over 100,000 individuals in the United States, the majority of whom are from Black or African American and Hispanic or Latino populations.1   More than half of the people nationwide affected by SCD are enrolled in Medicaid or CHIP.2   States have opportunities to improve the care of children and adults with SCD.

While medical advancements, such as newborn screening and therapeutics, have transitioned SCD from a fatal childhood disease to a chronic condition, patients with SCD still have a significantly shorter life expectancy, more than 20 years shorter than the general population.3   Individuals with SCD may experience significant pain and other serious medical problems, such as infection, lung problems, stroke, and pregnancy complications, and frequently require hospitalization. In 2017, 78% people with SCD who were enrolled in Medicaid or CHIP had an emergency department visit, and 49% had at least 1 inpatient hospital stay.4   For example, data show gaps in recommended care for Medicaid and CHIP beneficiaries with SCD, specifically in rates of transcranial doppler ultrasound screening and pneumococcal vaccination for children, and in rates of hydroxyurea use among children and adults in 2017.

The CMCS Quality Improvement (QI) Program provides state Medicaid and CHIP QI partners with information, tools, and expert support. Technical assistance is available to help states build QI knowledge and skills, develop QI projects, and implement, spread, and scale-up QI initiatives. For more information, please contact MedicaidCHIPQI@cms.hhs.gov and explore our programming online.

Medicaid and CHIP Coverage of New SCD Treatments

In December of 2023, the Food and Drug Administration approved two milestone treatments, the first cell-based gene therapies for SCD. In February of 2024, CMCS released a slide deck reviewing coverage for these new treatments under Medicaid and CHIP, including state opportunities in value-based purchasing, services related to gene therapy, and access to Out-of-State providers. The slide deck also reviews the Medicaid Optional Benefit for SCD, and more general opportunities for states to improve care to beneficiaries with SCD.

Medicaid and CHIP SCD Reports

Infographic:  At a Glance:  Medicaid and CHIP Beneficiaries with Sickle Cell Disease

The Medicaid and CHIP SCD Report and Infographic provide granular information on demographic, health, healthcare utilization among adult and children, by age with and without SCD. This report used 2017 data to provide the first-ever comprehensive national and state-level portrait of SCD among adults and children enrolled in Medicaid and CHIP. It also provides detailed information on various demographic, health, and healthcare utilization characteristics among Medicaid and CHIP beneficiaries with and without SCD. The report consists of key findings and 5 sets of detailed data tables on, beneficiaries with SCD including: (1) demographic and geographic characteristics, (2) recommended care for SCD, (3) health care utilization, (4) preventive care, and (5) other health conditions. This report also includes national estimates on, for example, antibiotic prophylaxis in children with SCD who are enrolled in Medicaid and CHIP.

Quality Measures

CMS supported the development of two pediatric SCD quality measures for children through the Medicaid and CHIP Pediatric Quality Measures Program (PQMP). These SCD measures, like other measures developed through PQMP funding, are available for use by health plans and providers to monitor and improve the quality of care for children. These measures have also been added to the Core Quality Measures Collaborative Pediatrics measure set.

Additional Resources

1. Centers for Disease Control and Prevention. Data & Statistics on Sickle Cell Disease, July 2023. https://www.cdc.gov/ncbddd/sicklecell/data.html

2. https://www.cms.gov/files/document/sickle-cell-disease-action-plan.pdf

3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10336259/

4. https://www.medicaid.gov/medicaid/quality-of-care/downloads/sickle-cell-disease-infographic.pdf