Millions may soon lose Medicaid when they don't have to -- as one Florida family has already learned

Five-year-old Penelope Sapia was diagnosed with a rare disease at birth. Ever since then, her mother, Gillian Sapia, has had to become well-versed in the complex world of Medicaid enrollment -- the only way the family affords the constant brain scans, kidney tests and seizure medications that Penelope needs to treat her classic galactosemia, a genetic metabolic disorder.

That's why Gillian Sapia, a former nurse turned full-time caretaker for her daughter, was stunned when she received a text from Penelope's occupational therapist in May. Penelope no longer had Medicaid, the therapist texted, and she wouldn't be able to get treatment again until she did.

"I was crying all day," said Sapia, who wasn't sure if she'd made a mistake renewing her daughter's Medicaid or if there had been a mistake in the system. "It was just so overwhelming and so defeating because I really do -- my whole life is taking care of her. I'm her caretaker. And I felt like a bad mom."

Sapia knew that their home state of Florida, along with a handful of other states, had begun combing through Medicaid rolls to make sure everyone was still eligible -- as required with the end this year of the federal government's public health emergency for COVID-19.

Nonetheless, Sapia had expected to remain enrolled because, she said, she applied for renewal and hadn't heard otherwise from the state Medicaid office.

Instead, Sapia said that text from her daughter's occupational therapist kicked off a three-week period of daily calls, often with hourslong hold times, to reach agents with the Florida Department of Children and Families (DCF). When she couldn't get answers there, she turned to health advocates and lawyers who took up her case.

In that time, the Sapias said, they spent about $1,000 a week to keep up with Penelope's health care needs as they struggled to find out why she lost her Medicaid coverage -- and how to get it back.

Three weeks later, after working with lawyers and a health advocacy group called the Florida Health Justice Project, Sapia said she got a call carrying good news: Penelope was back on Medicaid.

But the Sapias say they still don't have a clear answer for why they were suddenly removed in the first place.

DCF declined to comment to ABC News on Penelope's case, citing privacy concerns, and a spokesperson did not respond to a detailed list of questions for this story. But the spokesperson maintained that "everyone that is removed from Medicaid receives a final notice informing them of the reason for termination."

Sapia said that wasn't her experience.

"They didn't even tell me that I was dropped. And I went through all of my letters to see where I was dropped, and there was absolutely not a single letter in my profile online," she said. "No answers whatsoever."

In May, the same month the Sapias were removed from Medicaid, Florida removed around 250,000 other enrollees -- and nationwide, more than 1.5 million Americans have lost coverage in the last four months, according to an analysis of available data from at least 25 states by the nonpartisan health policy center KFF.

Why Medicaid is undergoing a huge review

The massive shift in health care coverage -- potentially the biggest since the country implemented the Affordable Care Act 10 years ago, experts have said -- started in the spring, when the country officially moved out of the pandemic's emergency phase, first declared by the federal government in 2020.

States had been given additional federal funding for the last three years to provide continuous Medicaid coverage, ensuring no one lost health care amid the throes of COVID-19.

The end of the emergency, in May, also meant the end of the federal money and states could once again begin reviewing their Medicaid rolls, asking people to renew their coverage and prove they're still eligible for government-funded health care. Florida began redetermining Medicaid eligibility on May 1 and will be updating the coverage rolls each month through March 2024.

In Arkansas, where at least 110,000 people have lost coverage so far, according to KFF, Republican Gov. Sarah Huckabee Sanders has pledged to carry out the process in half the time the federal government called for states to use. Huckabee has called the Medicaid rollbacks "necessary" to help get the program "back to normal."

"We're simply removing ineligible participants from the program to reserve resources for those who need them and follow the law," she wrote in an op-ed for The Wall Street Journal in May.

Nearly all states will have begun their redetermination processes by July, and about half the country already has.

In all, 15 million people could get removed from the Medicaid rolls during the redetermination process, the U.S. Centers for Medicare and Medicaid Services (CMS) estimates.

Up to 7M Americans may lose coverage unnecessarily

The concern of health advocates, though, is for people like the Sapias, who seemingly slip through the cracks of bureaucracy.

With such a big undertaking after three years, Medicaid officials estimate that there could be roughly 7 million people who are still eligible but lose their coverage anyway.

"That is of paramount concern to us," Dan Tsai, who oversees federal Medicaid efforts for CMS, told ABC News in an interview.

The estimate comes from historical data, Tsai said, which shows that before the pandemic, people struggled to keep up with regular reapplications for Medicaid coverage. Procedural errors, missed notices and confusion are known factors in part to blame for eligible recipients losing coverage, he said.

"Because of the Medicaid renewal process, which is often very paper-based, you have individuals in the program -- kids, families, parents -- losing coverage for a period of time and often not knowing it until they show back up at the doctor's office," he said.

Referring to the 15 million expected to lose Medicaid coverage with the end of COVID-19 funding, Tsai said, "We know and have estimated that roughly half of that ... will be people that are still eligible and lose coverage. Not because their income has changed but because of red tape, of not getting a piece of paper in the mail or knowing that they were up for renewal and needing to submit and return a form to the state."

In Florida, for example, 82% of those removed from the Medicaid rolls in May lost coverage because of "procedural reasons," according to a KFF analysis of the Florida redetermination data from May. That meant people didn't fill out a form correctly or submit it in time, or perhaps moved homes and missed a letter notifying them of the change in the mail.

By contrast, 18% of the 250,000 people in Florida were removed in May because they were ineligible, KFF found, usually meaning they'd found employer-sponsored health care or they now made too much money to qualify for the low-income program and were transferred over to coverage through the ACA, also known as "Obamacare."

DCF did not respond to ABC News' multiple requests for comment regarding KFF's findings.

While it's still unclear why Penelope Sapia was temporarily removed from Medicaid coverage, experts who reviewed her case pointed out that Florida's plan pledges to keep children with medically complex conditions enrolled until the end of the redetermination process.

Because of that, the Sapias expect her to have coverage until they go through the renewal again in March 2024 -- but her story raises concern about the state's process, said Joan Alker, executive director of the Center for Children and Families at Georgetown University.

Across the country, Alker said, it will be a challenge to navigate such a far-reaching process without dropping people from coverage unnecessarily.

"This is a really heavy lift. We see mistakes are made. Families don't get the letter, they don't understand the letter, they have a hard time getting help," she said.

While the DCF wouldn't comment on Penelope Sapia, the department's deputy chief of staff, Mallory McManus said they are "utilizing an aggressive text and email effort in addition to traditional mail."

"If all of those efforts are unsuccessful, we are calling recipients to inform them that their redetermination is past due and to encourage them to respond to the Department," McManus told ABC News.

Tsai, at CMS, said his department has been working for two years to get states to streamline their processes in order to lessen the blow when redeterminations inevitably began again.

"So much of the work and the strategies we put on the table, the all-hands-on-deck moment now, is to help make sure that everybody eligible is aware of what's happening, has a chance to update their contact information with the state and really is able to return the renewal form to keep their coverage," he said.

"There's more to do," he acknowledged. "And indeed, some states have taken us up on every option and strategy that we've put on the table. Some states have taken up fewer of those."

But the "bottom line" is this, he said. "We're really encouraging and urging our state partners and others to really adopt, take up, do everything in your power, to do everything to keep people covered."

ABC News' Eric Fayeulle and Benjamin Siegel contributed to this report.