Challenge

For many of the estimated 1,400 individuals living with Sickle Cell Disease (SCD) in Wisconsin, accessing timely medical care has been complicated by significant transportation challenges. In Wisconsin, approximately 80% of the SCD population is enrolled in Medicaid, which provides non-emergency medical transportation services to support access to care. However, the standard Medicaid NEMT requirement to request these rides at least 48 hours in advance can create obstacles to access time-sensitive outpatient care, potentially increasing reliance on emergency departments for the community.

Approach

To address this systemic issue, the Sickle Cell Data Collection program in Wisconsin (SCDC-WI) began analyzing administrative transportation claims from Medicaid, surveys, and lived experiences of those navigating the Medicaid transportation system in the surveillance program. The lived experiences were collected using semi-structured interviews, which were conducted in collaboration with our partner community-based organization, Sickle Cell Warriors of Wisconsin.  The data analyses and findings were shared at national conferences and with Medicaid leadership. Our analyses of surveys showed that 33% of individuals reported transportation challenges in the past year, while only around 8% of Medicaid beneficiaries had an NEMT claim. Further thematic analyses of semi-structured interviews indicated scheduling inconveniences as a barrier to using NEMT services by individuals and families with SCD.

Impacts

Sickle cell-related transportation is now officially designated as a “critical care ride” within the Medicaid framework, a designation that acknowledges the time-sensitive medical needs of the SCD population. As a result of this policy shift, these rides can now be requested and scheduled on the same day, which would support the transportation needs of the SCD population by successfully removing the 48-hour window. This change ensures that transportation is no longer a barrier to receiving life-saving care and follow-up services for the SCD community in Wisconsin who receive Medicaid benefits.

“It is important to understand the number of individuals living with SCD in Wisconsin, and state-specific data and resources are crucial, especially for warriors and parents of kids with SCD, to be able to operate in a factual and educational space. Infographics are a starting point.” – Members of SCDC-WI Community Advisory Board

Documenting Year 2 Impact: An SCDC-WI Success Story (2025)