Erica Olenski, a single mother of three in McKinney, Texas, juggles the responsibilities of parenthood and a full-time job, in addition to the demands of her 5-year-old son’s brain cancer.
August was diagnosed in May 2019 and was declared cancer-free the following year, though medical complications lingered. Then in September of this year, he relapsed and restarted radiation treatment, Olenski said. Roughly two months later, a letter came: The Texas Health and Human Services Commission said August and one of his siblings were no longer eligible for Medicaid and would be kicked off unless Olenski could provide documentation verifying her employment history.
She had roughly three weeks before August would lose coverage.
“It’s already stressful enough to go through cancer treatment with a child. I mean, pediatric cancer is awful. It’s absolutely awful,” Olenski said. “And then to have something like this, that really seemed like an administrative issue, threaten our sense of stability and safety as we’re going through something that’s really traumatic was awful.”
For August in particular, Medicaid was a lifeline — it covered radiation and private nurses to care for him around the clock, Olenski said.
Her family is one of many that, over the last eight months, have had to navigate the phenomenon called Medicaid “unwinding”: Since April, states have been re-evaluating the eligibility of the program’s enrollees on a vast scale following a three-year pause on eligibility checks during the Covid pandemic.
Ordinarily, people enrolled in Medicaid — government-provided health insurance for people with low incomes or disabilities — go through eligibility checks every year to determine whether they can renew coverage. But in March 2020, the federal government froze the checks as part of its public health emergency. So people were continuously enrolled in Medicaid, and no one was dropped for three years.
That stopped when President Joe Biden ended the emergency in the spring. Many months later, Medicaid enrollees across the country are still getting letters like Olenski’s as part of the “unwinding” process, which is scheduled to continue through May. After that, the pre-pandemic status quo resumes.
As of Dec. 20, at least 13 million people had been disenrolled from Medicaid in 2023, according to an analysis by KFF, a nonprofit group focused on health policy. Net enrollment in the program (given that some people were newly enrolled or have re-enrolled) has dropped by around 7.8 million, according to an analysis by the Georgetown University Center for Children and Families.
“This is huge. We’ve never seen a decline like this,” said Joan Alker, the center’s executive director.
Just over 70% of Medicaid disenrollments in states with available data were for procedural reasons, such as missing paperwork, the KFF analysis found.
Losing coverage can have life-or-death consequences, even if it is eventually restored.
“For someone who has a chronic disease or disability, a lapse in coverage can actually cause their existing medical condition to worsen significantly,” said Jaeson Fournier, the CEO of CommUnityCare Health Centers, a federally qualified health center in Austin, Texas, with clinics offering free and low-cost care. “We do know very definitively that individuals who lack access to insurance, including Medicaid, will actually forgo needed services because of cost.”
Texas is “ground zero” for the Medicaid unwinding, Alker said. The state leads the U.S. in disenrollments, with around 1.7 million this year, according to KFF. As of late November, nearly 990,000 renewal applications in the state had been denied for procedural reasons.
Daniel Tsai, the director of the Center for Medicaid and Children’s Health Insurance Program Services, said his staff met with Texas officials to review the state’s eligibility evaluation process and assess cases in which people had lost Medicaid.
“We did require Texas to reinstate over 90,000 people that were incorrectly disenrolled from the program,” Tsai said.
The Texas Health and Human Services Commission told NBC News in a statement that it “planned this massive unwinding effort for more than a year,” and that if problems arise, the commission “works systematically to resolve any issues and reinstate recipients’ coverage if necessary.”
Tsai said that during the pandemic, Medicaid enrollment grew to record highs. So now, the unwinding process requires an “unprecedented level of effort” as states try to play catch-up, he said.
“We’ve never had 97 million people enrolled in the program,” Tsai said. “And we’ve never tried to do this all at once.”
Olenski, who works in health care communications, spent what she called a “defeating” few weeks phoning case workers and state agencies — anyone who could help — in an attempt to keep August’s Medicaid coverage. On Dec. 1, she said, he was briefly dropped. But the Texas Health and Human Services Commission reinstated August’s coverage the same day.
In a statement, the commission said it “did not receive a renewal application in time to redetermine eligibility for ongoing Medicaid coverage” for August.
“HHSC takes all possible actions to provide benefits to eligible Texans as quickly as possible,” the statement added. “We have taken several measures, including leveraging technology and standardizing on-the-job training, to improve the eligibility process.”
However, Marisol Garcia, a financial assistant at CommUnityCare Health Centers, said some people have lost their Medicaid benefits without even realizing it.
“We’ve been seeing a lot of patients that have no idea that their Medicaid ended,” Garcia said. “We have been constantly busy all the time.”
Kids have been significantly affected by the unwinding — net enrollment for children on Medicaid declined by over 3.2 million this year, according to the Georgetown analysis. In September, the U.S. Department of Health and Human Services announced that half a million children had regained coverage after the federal government worked with states to address renewal processing issues.
Olenski said her fight to keep August on Medicaid required “every extra ounce of time” she had — hours she doesn’t think she should have had to spend.
“My son is an active brain tumor patient undergoing active treatment. If somebody’s telling me it’s a paperwork issue, I don’t care, then they need to figure it out,” she said. “That’s not my job to do. My job is to be his parent and advocate — and I deserve to be his mom.”
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