# Enrollment patterns among medicaid beneficiaries with sickle cell disease: Multistate findings from the sickle cell data collection program

**Authors:** Ashima Singh, Mahua Dasgupta, Hannah K. Peng, Mei Zhou, Catie Clyde, Brandon K. Attell, Jhaqueline Valle, Sarah L. Reeves, Jeffrey Huebner, Angela B. Snyder

PMC · DOI: 10.1371/journal.pone.0334883 · 2025-10-27

## TL;DR

This study examines Medicaid enrollment patterns among people with sickle cell disease, finding that about 12% had enrollment gaps, with disabled adults more likely to stay enrolled continuously.

## Contribution

The study provides multistate insights into Medicaid enrollment gaps among sickle cell disease patients and identifies disability as a factor in continuous enrollment.

## Key findings

- Approximately 12% of children and adults with sickle cell disease had Medicaid enrollment gaps between 2017–2019.
- Disabled adults were significantly more likely to have continuous Medicaid enrollment compared to those with gaps.
- Enrollment patterns and gap duration varied across the four participating states.

## Abstract

Majority of individuals living with sickle cell disease (SCD) in the United States are enrolled in Medicaid. The objective of the study was to determine the patterns of Medicaid enrollment among individuals with SCD.

We determined the enrollment pattern among SCD Medicaid beneficiaries categorizing them in three groups: continuously enrolled, had exit and no return, had gaps in duration of enrollment during 2017–2019, leveraging the data from the Sickle Cell Data Collection Program in four states. We compared characteristics of individuals with gaps and those continuously enrolled using chi square tests.

Among 5883 children and 9260 adults, 70.5% and 61.8% respectively, were continuously enrolled. Gaps were observed in 12.5% of children and 12.9% of adults. A significantly smaller proportion of adults with gaps as compared to those who had continuous enrollment were disabled (CA:30.6% vs 65.3%; GA:23.7% vs 77.6%; MI:40.1% vs 69.5%; WI:39.8% vs 77.0%). Of all observed gaps, 60% were among adults. Enrollment patterns and gap duration varied by state.

Approximately 12% of individuals with SCD have gaps in enrollment during our 3-year study period. Individuals with disabilities were more likely to have continuous enrollment. Future work is needed to determine reasons for observed gaps and their impact on SCD health outcomes.

## Linked entities

- **Diseases:** sickle cell disease (MONDO:0011382)

## Full-text entities

- **Diseases:** SCD (MESH:D000755), Gaps (MESH:C562538), MI:40.1 (OMIM:616433)

## Figures

5 figures with captions in the complete paper: https://tomesphere.com/paper/PMC12558464/full.md

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Source: https://tomesphere.com/paper/PMC12558464