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

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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.

MORE: What do the changes in COVID data sharing mean for the US?

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."

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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.

Millions may soon lose Medicaid when they don't have to -- as one Florida
family has already learned originally appeared on abcnews.go.com

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