Medicaid Enrollees with Sickle Cell Disease Are a High-Need, High-Cost Population

By Keightley Amen - Last Updated: December 2, 2021

According to recent report in PLoS One, Medicaid enrollees who have sickle cell disease (SCD) are a high-need, high-cost population with often poor outcomes.

People with SCD experience episodes of severe pain and serious health problems, such as acute chest syndrome, stroke, kidney disease, and other chronic organ issues. The authors found that the disease’s effects often prevent patients from working and lead to eligibility for government insurance. Complicating the issue, most people with the disease are of African American descent and may be subject to various other socioeconomic challenges.

“Medicaid plays a significant role in funding treatment for people with SCD, paying for 66 percent of all SCD hospitalizations in 2004 and 58 percent of SCD emergency department visits between 1999 and 2007,” wrote the authors, led by April Grady of Manatt Health Strategies in Washington, D.C. “Deficiencies in quality of care for the population with SCD are well-documented and include poor access to knowledgeable healthcare providers, inadequate treatment of the disease’s effects on the body and of associated pain, and discrimination.”

To better understand the SCD Medicaid population, the researchers extracted data from Medicaid Analytic eXtract (MAX), a research database developed by the Centers for Medicare and Medicaid Services. The database contains enrollment and claims data for everyone enrolled in Medicaid. The study analyzed information from the four states with the highest number of Medicaid enrollees for the most recent year data were available in each state. Data came from California in 2014, Florida in 2012, New York in 2013, and Texas in 2012. The researchers used diagnosis and procedure codes to identify patients with SCD.

The researchers compared healthcare utilization between patients with SCD who were on Medicaid and enrollees without SCD. The SCD population had substantially more use of hospital-based care, including inpatient stays and outpatient emergency department visits. They also had more prescriptions for opioids and other medications. Average Medicaid spending for people with SCD was up to five times the average for all Medicaid enrollees in a state.

Despite the higher utilization and cost, Medicaid enrollees with SCD had a mortality rate that was nine times higher than those without SCD. Notably, the authors wrote, their analysis showed that SCD was a significant pathway that led patients to Medicaid.

“Although SCD is the most common inherited blood disorder in the United States, there are substantial gaps in knowledge about the people who are affected by the disease—for example, where they use services, whether they receive recommended treatments, and how their co-morbid conditions and health outcomes vary,” they wrote. “A key contribution to the existing knowledge base is the finding that disability is a predominant pathway to Medicaid eligibility for those with SCD, which has wide-ranging implications. Because SCD is a debilitating condition that affects individuals’ day-to-day functioning and ability to work, its impacts on their health and well-being are lifelong. In turn, many individuals with SCD–particularly those who are impaired enough to qualify for disability benefits–will receive Medicaid coverage of their high health care needs on a long-term basis.”