Hey, What Happened to My Health Insurance?

Tamikka Burks was in an Arkansas emergency room when she found out she had lost her Medicaid coverage. In mid-September, she went in to deal with a cyst in her toe, and someone at the hospital informed her that the state’s Department of Human Services had cut off her coverage on Sept. 1. She felt, she said, “just exhausted. Scared.”

A few days later, it got worse. Ms. Burks discovered she was pregnant, a pregnancy that was considered high risk because she has high blood pressure. She takes two medications to keep her condition under control that can endanger a pregnancy further. Her doctor told her to switch to a different medication while she was pregnant, but without insurance it would cost about $45, instead of the $5 maximum copay she had spent under Medicaid. Ms. Burks, a 35-year-old single mother of two, doesn’t have anyone she could borrow that kind of money from, and “I literally have $50 from now until Friday,” she told me on a Tuesday.

She started taking just one of the two medications she was on, in the hope that it would be less dangerous, but she became too afraid of what it might do to her or the baby. In late September, she drove 10 hours round trip to Kansas to get an abortion.

“I don’t believe in abortion, so it doesn’t sit right with me at all,” she told me. She wanted three children and was excited for a new baby. But she was terrified of the health implications, afraid that if she kept her baby they would both die in the second or third trimester. “That would be just my luck,” she said.

Ms. Burks hadn’t even heard of the Medicaid unwinding until she was caught up in it. But she’s among nearly 427,500 people in Arkansas, and at least 12 and a half million people nationwide, who have been disenrolled from Medicaid since April, when states had to start verifying everyone’s eligibility again after the pandemic health emergency officially ended. The Biden administration has given states 12 months to go through the unwinding process, but Republican lawmakers in Arkansas decided to get it done in six months — the shortest timeline announced by any state — to reduce, in Gov. Sarah Huckabee Sanders’s words, “government dependency.”

Some states have tried to move more slowly and carefully to find ways to keep people enrolled. But “there are some states,” Joan Alker, the executive director of Georgetown University’s Center for Children and Families, said, “where the politics are just about kicking people off quickly.”

One of the first things Congress did in reaction to the Covid-19 pandemic was to require states to keep people enrolled in Medicaid no matter what. At the time, it was seen as the right way to react to an all-engulfing public health emergency. But the multiyear pandemic proved that even absent an emergency, Americans can be kept on Medicaid for long periods of time without having to constantly prove their eligibility.

And keeping people enrolled reaps huge benefits. After enrollment in Medicaid and the Children’s Health Insurance Program fell in the years leading up to the pandemic, the trend reversed and more than 21 million people were added during the crisis. This ensured that people had health insurance while reducing churn. Churn — when recipients cycle in and out of the program because of administrative hassles — costs as much as $773 per person in today’s dollars. This represents “a significant share of Medicaid expenses,” according to one study.

There’s the fiscal savings, and then there’s what it means for people to have health coverage they can rely on. Jamila Michener, an associate professor of government at Cornell, and a colleague interviewed Medicaid recipients in 2021 in Kentucky, North Carolina and Pennsylvania. “The main thing we get from people is just relief — they’re relieved that they have Medicaid and it seems like they might not lose it for a while,” Dr. Michener said. Many were in tears. “This is just such an important part of your ability to survive.” People took full advantage of the coverage; they told her that they had finally scheduled a much-needed surgery, sought out mental health care or picked up medications they had been waiting on.

Not having to deal with the hassle of regularly recertifying their eligibility also “opens up a whole world of possibilities” for people to pursue, Dr. Michener said. No longer did a slight increase in income risk their benefits. That meant they could take new jobs or accept raises they would have otherwise avoided in order to keep coverage.

Ms. Burks has been on Medicaid on and off since her son was born 18 years ago. Before the pandemic, she had to regularly fill out paperwork and send in documentation proving she was still eligible. “It’s always a hassle,” she said. But during the public health emergency, when that process was suspended, she received a letter every month saying she still had coverage without having to do anything. It was “just a little piece of heaven,” she said.

But at the end of 2022, Congress struck a deal to end the requirement that states keep people enrolled. By August, Arkansas had already disenrolled more people than the total increase in enrollment it saw during the pandemic. Nationally, as many as 15 million people could eventually lose their Medicaid or CHIP coverage. Refusing to learn the lesson that keeping people enrolled in health insurance helps them take care of themselves while generating fiscal savings, we’ve reverted to a fragmented health care system that denies too many people care.

The consequences have been immediate and devastating.

Charles and Phyllis Wells were also affected by Arkansas’s effort to thin its Medicaid ranks as quickly as possible. Mr. Wells, who is 70 and has physical limitations that require him to use a walker or a wheelchair, has been caring for Phyllis, his sister, who is nonverbal, for the last eight years.

“Before my mom died she made me promise to do everything possible to keep her out of a nursing home,” he said of his sister. Fulfilling that promise requires the help of health aides. Medicaid covers someone coming to their house five days a week, eight hours a day, to give Ms. Wells a shower, ensure she’s clean after using the bathroom, cook for the two of them and do tasks like laundry that are challenging for Mr. Wells. These aides take Ms. Wells to doctor appointments and care for her when Mr. Wells goes to the doctor himself. On weekends, when the aides don’t come, Ms. Wells doesn’t get a shower.

In December of last year, before the unwinding process had begun, one of their aides got a call from her office while she was at the Wells’s house, saying that Ms. Wells’s coverage had been cut off and that the aide was not to bathe or care for Ms. Wells that day — if she did, the company might be forced to drop the family as clients. They lost Ms. Wells’s care for nearly a month; Mr. Wells had to miss doctor appointments for his heart and kidneys, including his monthly catheter replacement, because he didn’t have anyone to stay with Ms. Wells. It was so difficult to schedule new appointments that after a few months he had to go to an E.R. to get a new catheter. He was later told that Ms. Wells’s coverage loss was a mistake.

But then it happened again in late June, after the unwinding process was underway. Once again, their aide got a call telling her she could no longer care for Ms. Wells, “just out of the clear blue sky,” Mr. Wells said. “I mean, I got upset.” So much so that he started having chest pains and difficulty breathing. Afraid he was having a heart attack, he ended up in an E.R. overnight, although it was more likely an anxiety attack. His sister went without coverage for a little over two weeks. The Arkansas Department of Human Services told him the coverage loss this time was the result of a computer glitch.

Both times Mr. Wells and the aide tried to reinstate the coverage on their own, but it took reaching out to a Legal Aid lawyer who had direct channels to state officials to get it fixed, an inefficient process that isn’t available to most people. Mr. Wells now worries that Ms. Wells’s coverage could once again get cut off at any time. “It’s happened twice in less than a year, so yeah,” he said.

He also knows their story is not unique. “There are more people out there just like Phyllis. They need this,” he said. State officials “don’t understand — maybe they don’t care — that they are actually hurting people, they’re impacting people’s lives.”

Outrageously, most of the Medicaid losses we’ve seen since the unwinding began are not necessarily because people are ineligible but because they’re getting tripped up by how complicated it is to stay enrolled. First, they need to know that they have to recertify to keep their coverage, even though they haven’t had to do that for the past three years, and to compound the problem, many letters from state governments about the new requirement go to the wrong addresses. Then they have to understand the letters they receive, many of which are overly complex, and then they must gather the right documents and fill out the right forms. If they need any help or have any questions, call-center lines are often jammed. More than three-quarters of Arkansans who were kicked off Medicaid lost coverage because they didn’t make it through that process, not because they were found to be ineligible, a rate that is just higher than the 71 percent rate for all states that have reported data.

Getting back on Medicaid after being culled in the unwinding means wading through a sea of red tape. Sholonda Woods and her 16-year-old daughter were cut off in February. Ms. Woods has always been on top of sending in paperwork to stay eligible, so when she got a letter saying they had lost their Medicaid coverage, she had to “take my anger out on the wall and just cry,” she said. “I was heated.”

Ms. Woods moved to Arkansas from Missouri three and a half years ago. To get back on Medicaid, Arkansas required her to get a letter from Missouri noting that her Medicaid case there was closed, which took months — getting through to Missouri’s Department of Social Services required staying on the phone for two or three hours, she said.

After that, Arkansas made her get her former employer at a Days Inn, where she worked for just a month in September, to sign a form saying that she no longer worked there. Ms. Woods doesn’t own a car, so she had to take the bus a half-hour to the Days Inn, only to have her former boss refuse to sign.

It wasn’t until Ms. Woods spoke to a government official at a protest with the nonprofit Arkansas Community Organizations that she was able to get her coverage restored, in April. But her daughter’s case didn’t get fixed until August. For months, Ms. Woods was unable to get her daughter’s asthma inhaler or A.D.H.D. medication. “I was hurt. I was mad,” she said.

Many other parents have gone through what Ms. Woods has gone through. Among the 38 states that have reported data, more than three million children have lost Medicaid or CHIP coverage. One driver of the big losses is technical: States are required to use data they already have — from, say, a family’s food stamps application or wage information — to determine whether people are eligible. But as part of that process, 30 states and Washington, D.C., have examined eligibility only for the head of the household and then cut the entire family off, even though children are far more likely to be eligible than their parents. Those parents are then forced to fix the problem.

And if anything goes wrong when they try, there’s little help available to them. In May, one study showed, the average wait time to reach someone on the phone in 10 states was 20 minutes or longer, and in nine states a quarter or more of callers hung up without getting through to a person. According to the nonprofit UnidosUS, the average wait for Spanish-speaking callers in Florida is nearly two and a half hours. “Folks don’t have that time,” Ms. Alker pointed out. “They’re working in jobs where they can’t get a break, they’re not allowed to take phone calls, they get 30 minutes for lunch.”

Reverting to the norm after the pandemic experience doesn’t just mean people will go without care, although that’s terrible enough; it could harm our democracy. “One of the things people say to us again and again is: If they could help us all along, why haven’t they been doing it?” Dr. Michener said. She co-wrote a study that found voter turnout decreased when Medicaid recipients lost their coverage. “I don’t know that there’s as striking a message as people received in the past years: It is in our power to help you, but we choose when to and how to and you have very little control over that,” she said.

There are some immediate steps that could lessen the devastation of the unwinding. The Biden administration has given states flexibility to make the process go more smoothly, like the ability to pause the unwinding. So far, only Kentucky and North Carolina have taken up the option, and only for children. In December, the Biden administration told states that if they didn’t comply with federal policies, they would be docked funding and also warned states with particularly high disenrollment numbers. But it didn’t take any enforcement action. The administration has begun to bark; now it needs to bite. At some point, it must start cracking down on states that are recklessly pushing so many people off the rolls. “Optional’s no good anymore,” Ms. Alker said. One power the administration has is to require states to pause the process, which has happened for some found to be improperly kicking children off Medicaid based on their parents’ data.

The Biden administration also has the power of the purse; it can create a corrective plan, and if a state doesn’t comply with the plan, the federal government can pull the extra funding states are currently receiving. The government can also order a state to reinstate people who have “been erroneously terminated,” Ms. Alker said.

But while such measures can offer some relief, it doesn’t change the country’s reversion to a status quo where health care is not a given and keeping it requires navigating a labyrinth. Ultimately, the United States needs universal health care akin to what every other developed country has already committed to. At the very least, we can learn the lessons from the pandemic: Getting more people on Medicaid — and making it easy for them to stay on — benefits us all.

Ms. Burks tried to figure out what happened to her Medicaid coverage. “Getting through to D.H.S. is like pulling teeth,” she said. She never reached anyone; she always waited at least an hour on hold, and the line sometimes disconnected. Going to a physical office requires “gas and time that I just didn’t have,” she said. Ms. Burks never received any mail from the state about losing Medicaid, she told me, and still hadn’t by the time she ended her pregnancy. She eventually got a call telling her that she had been removed because her income was too high thanks to her job at a nonprofit.

Now her only option to get health insurance is to enroll in an Affordable Care Act marketplace plan. She doesn’t plan to enroll anytime soon because of the cost, though. Instead, she’s working on weaning herself off the medication she takes to address past addiction, medication that allows her to be a present parent and a “productive member of society,” as she put it, but which costs $400 a month without insurance. She’s been sober for six years, but “I’m going to risk my sobriety and get off it because that’s $400 a month that I need,” she said.

Ultimately, she feels like she’s being penalized for working and earning an income. She could quit her job and get back on Medicaid. “But,” she said, “that’s not who I am.”

Bryce Covert (@brycecovert) is a journalist who focuses on the economy, with an emphasis on policies that affect workers and families.

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