20 million people lost their Medicaid coverage in the last year. Here’s what happened to them

(CNN) — Justin Gibbs had finally gotten his high blood pressure under control with a combination of three medications. But after he had his Medicaid coverage terminated in December amid a nationwide eligibility review, he had to go without one medication for a week and a second for several days, sparking fears that the delicate balance would unravel.

“I was concerned that my blood pressure would spike, and I wouldn’t have any way to regulate it,” said Gibbs, 53, a married father of four who works multiple part-time jobs.

Fortunately, the Miamisburg, Ohio, resident suffered no ill effects and was able to pick up new prescriptions when his Affordable Care Act policy kicked in in January. He’ll soon start a job with employer coverage.

But a sizable share of the other 20.1 million Americans who were disenrolled from Medicaid in the so-called unwinding over the past year are not so lucky.

Nearly a quarter of adults who say they were disenrolled report being uninsured now, according to a survey released Friday by KFF, which has tallied terminations since they began in April 2023. The survey sheds light on the effects of the process on enrollees and the consequences, which are not well tracked by states and the federal government.

About half of those disenrolled subsequently regained their Medicaid coverage, and more than a quarter are now covered through an employer, Medicare, an Affordable Care Act exchange or another source, KFF found.

Still, 7 in 10 of those disenrolled were left uninsured at some point, and more than half of them said they had to skip or delay getting care or medications during that period, the survey found. The loss of coverage also prompted three-quarters of them to worry about their physical health and 60% to fear for their mental health.

“It was disruptive to people’s lives,” said Ashley Kirzinger, KFF’s director of survey methodology.

Overall, 81% of adults enrolled in Medicaid prior to the unwinding said they were not disenrolled during the last year, the survey found.

Years of continuous coverage

Tens of millions of Americans didn’t have to worry about renewing or losing their Medicaid coverage for the first three years of the Covid-19 pandemic, thanks to a 2020 congressional relief package that barred states from disenrolling residents whom they deemed no longer qualify in exchange for enhanced federal funding. By the time that provision expired last spring, enrollment had ballooned by nearly a third to more than 94 million people.

Since eligibility reviews and terminations resumed, nearly 44 million people, or 46%, have had their coverage renewed, according to a KFF compilation of state and federal data. More than 30 million people, or 32%, have renewals remaining. The rates widely vary by state.

About 1 in 5 people with Medicaid have been disenrolled. Of this group, 69% were dropped for so-called procedural reasons, according to KFF. This typically happens when enrollees do not complete the renewal form, often because it may have been sent to an old address, it was difficult to understand or it wasn’t returned by the deadline. Some people, however, may not return their forms because they know they earn too much to qualify or they obtained coverage elsewhere, such as from an employer.

The high rate of procedural terminations has raised red flags for federal officials and advocates because at least some of these folks likely remain eligible for Medicaid but may become uninsured.

Difficult process for some

More than half of Medicaid enrollees who maintained coverage did not have to complete a renewal package because their states verified their ongoing eligibility through other data sources, such as state wage databases, according to KFF’s compilation.

But among those surveyed, two-thirds took action to renew their coverage. Some 58% of those who tried to reenroll had at least one problem during the process, most commonly long waits on hold on the phone for assistance.

Gibbs recalled one day that he was on hold for 6.5 hours before he had to hang up to go to work. He had questions about the documentation he needed and wanted to make sure that what he submitted online was received since he did not get a confirmation notice.

“I think it’s purposefully difficult,” said Gibbs, who owned a dance studio with his wife until they had to shutter it during the pandemic.

While many people KFF surveyed thought the process was easy, about 3 in 10 said that figuring out what documents were required and then gathering and submitting that paperwork was very or somewhat difficult. Some said they didn’t have reliable internet service to complete the forms, so they had to do it by mail, which was more complicated.

“They were super confused about what documents they were supposed to provide,” Kirzinger said.

Those living in states that did not expand Medicaid – 10 states as of December – said they had to submit paperwork, such as proof of citizenship, that KFF was not expecting, she said. It’s unclear whether the states actually required those documents or the enrollees just thought they were needed.

Just over a quarter of enrollees had assistance renewing, while another 17% wanted help but did not receive it.

When JP Peters learned last year that he had to renew his coverage, he panicked, fearing that he could be left uninsured.

“I can’t afford that – even one small trip to the doctor is expensive,” said Peters, 57, who serviced irrigation and pump systems before becoming disabled in 2022. “Medical bills can add up like an avalanche.”

The Punta Gorda, Florida, resident was fortunate that he could lean on a friend, who is a retired nurse, to help enroll him in Medicare. Even so, the process was not without its hitches. The start date of his new coverage was wrong initially and had to be updated at his local Social Security office. Because of the uncertainty, he held off on some needed dental work and on having tests done for a breathing issue for a few months.

Now that he has coverage and a new inhaler, he is breathing easier.

The unwinding was “an aggravating inconvenience,” he said.

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