Erica Olenski, a mom of three from McKinney, Texas, is doing her best to take care of her kids and work full-time. On top of that, she’s dealing with her youngest son’s brain cancer.
Her son August was found to have cancer in May 2019 but was cancer-free a year later. However, complications stayed. In September of the current year, his cancer came back, and he began radiation treatment again, Olenski shared. Then, about two months after, they received a letter stating that August and one of his brothers or sisters wouldn’t be covered by Medicaid anymore unless Olenski proved where she worked.
She had about three weeks to fix this before August’s Medicaid would stop.
“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.”
Medicaid was crucial for August. It paid for his radiation and for nurses to look after him day and night, Olenski explained.
Her family’s struggle comes as part of a bigger issue called Medicaid “unwinding.” Since April, after a three-year break because of the Covid pandemic, states have started checking again if people who have Medicaid should still get it.
Usually, Medicaid checks every year if people who get this help because they don’t have much money or have disabilities are still eligible. But in March 2020, the government stopped these checks to help during the health crisis, so nobody lost Medicaid for three years.
This changed when President Joe Biden decided the emergency was over last spring. Now, many people are getting letters like Olenski’s, telling them they might not get Medicaid anymore. This check-up process is supposed to keep going until May. After that, things will go back to how they were before the pandemic.
As of December 20, over 13 million people have been removed from Medicaid in 2023, a study by KFF, a health policy nonprofit, found. Even considering people who joined or rejoined, the total number of people with Medicaid has gone down by about 7.8 million, the Georgetown University Center for Children and Families reports.
“This is huge. We’ve never seen a decline like this,” said Joan Alker, the center’s executive director.
In states that shared their data, more than 70% of people lost their Medicaid because they didn’t complete the required paperwork, according to research by KFF.
Not having Medicaid can be extremely serious, sometimes even a matter of life or death.
Jaeson Fournier, who runs CommUnityCare Health Centers in Austin, Texas, said that people with ongoing health issues can see their conditions get much worse if they lose Medicaid. “People without insurance, including Medicaid, often skip necessary treatments because they can’t afford them,” he mentioned.
Texas has seen the most people lose Medicaid, with about 1.7 million disenrollments this year, KFF reports. By the end of November, nearly 990,000 people in Texas had their renewal denied because they didn’t follow the paperwork process correctly.
Daniel Tsai, who oversees Medicaid and CHIP Services, shared that his team worked with Texas to look over how they decide who gets Medicaid. They found over 90,000 cases where people were mistakenly removed from Medicaid and had them put back on.
The Texas Health and Human Services Commission stated to NBC News that they’ve been preparing for this big task for over a year. They also said they’re ready to fix any problems and get people their coverage back if needed.
Tsai noted that Medicaid saw a huge increase in enrollees during the pandemic. So, now, states are working harder than ever to update everyone’s status, calling it an effort like never before.
“We’ve never had 97 million people enrolled in the program,” Tsai said. “And we’ve never tried to do this all at once.”
Erica Olenski, who works in health care communications, faced a tough few weeks trying to ensure her son August kept his Medicaid coverage. Despite her efforts, on December 1, August’s coverage was momentarily stopped, only to be reinstated by the Texas Health and Human Services Commission on the same day.
The commission explained that they didn’t get August’s renewal application in time to reassess his eligibility for continuous Medicaid coverage.
“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.”
They stated their commitment to quickly helping eligible Texans, mentioning the use of technology and training improvements to make the eligibility process better.
“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.”
Children have been especially hit hard by the Medicaid unwinding process, with more than 3.2 million kids losing coverage this year, a report from Georgetown University found. In response, the U.S. Department of Health and Human Services reported in September that half a million children had their coverage restored after the federal government and states worked together to fix issues with the renewal process.
Olenski described her struggle to maintain August’s Medicaid as draining, saying it took “every extra ounce of time” she had — time she believes shouldn’t have been necessary 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.”
