New KFF Focus Groups Reveal Medicaid Enrollee Experiences During Unwinding

Over six months after the expiration of pandemic-era enrollment protections, at least 27 million Medicaid enrollees—or roughly one-in-three enrollees across the country—have completed their state’s eligibility renewal process for the program. Over 18 million people have had their coverage renewed and over 10 million have been disenrolled, as of November 8, 2023.

New KFF focus groups look beneath the numbers at the experiences of enrollees who have gone through the Medicaid renewal process. Drawing from five focus groups with adults in Arizona, Florida and Pennsylvania who had their coverage renewed or who were disenrolled, the focus groups probed enrollees’ experiences with Medicaid, awareness of the end of the continuous enrollment provision, experiences renewing their coverage in recent months, and—if they were disenrolled—their efforts to regain Medicaid or transition to other coverage. Insights from focus group participants highlight both where processes are working well and where policies and systems create administrative barriers to maintaining Medicaid coverage for those who remain eligible.

Among the key takeaways:

• Most participants who successfully renewed their Medicaid coverage found the process quick and easy, especially when done online. However, some participants reported barriers to completing or submitting paperwork and faced long processing times. Some also experienced problems with understanding notices and other communications from the states, as well as challenges getting through to call centers.
• Participants who were disenrolled lost their coverage for a variety of reasons, and some did not know why they had been disenrolled. Several said they did not receive any notices from the state and did not realize they had lost their coverage until they went to fill a prescription. After losing Medicaid, some participants reenrolled in Medicaid quickly while some obtained coverage through their employer or the Marketplace. People no longer eligible for Medicaid and without access to employer coverage should generally be eligible for subsidized coverage through the ACA Marketplace, though some may fall into the “coverage gap” in states that have not expanded Medicaid under the ACA. Some participants, however, became uninsured. For example, one participant’s postpartum coverage was terminated despite still being eligible, and she could not get her coverage reinstated. Another said Marketplace premiums were unaffordable. Several who lost coverage faced substantial out-of-pocket costs for medically necessary care or went without care because they could not afford it.
• Participants said Medicaid enables them to access health care services, mental health services, and medications for themselves and their children with limited out-of-pocket costs and often keeps them healthy enough to work. Awareness that Medicaid coverage had been protected during the pandemic and that disenrollments had begun again in their state varied among participants.
• Many participants said that losing Medicaid would be harmful due to loss of access to needed prescriptions and treatments. They believed that losing Medicaid would cause a serious decline in their physical and mental health and expressed anxiety at the thought of no longer having Medicaid coverage for themselves or their children.

As unwinding continues, these enrollee experiences can help inform policy makers about opportunities to improve communication and outreach, simplify notices, provide assistance with renewals including through call centers, and help enrollees who were disenrolled regain Medicaid if eligible or transition to other coverage if no longer eligible.