Back in May, Florida mother Liz Adams got the news that her 7-year-old, Bryan, and his sister were being dropped from Medicaid. Bryan, who is in remission for leukemia, was scheduled for a biopsy the next day.
"No one else I can talk to, not even the doctor's offices, can do anything," said Adams. "They're like 'We can tell them that it's absolutely necessary that he needs medical treatment, but we can't make them give you your insurance back.'"
Adams is among the millions affected by Medicaid changes. Since April, dozens of states have begun dropping Medicaid recipients as the COVID-era rule requiring states to continuously enroll them came to an end.
"I had a mother who came in and said I know this is early, but I need to get this kid in before they lose their Medicaid coverage," said Idaho-based family physician Dr. Megan Haughton.
An estimated 4.8 million Medicaid enrollees have lost their Medicaid coverage as of Aug. 15, according to health policy research firm KFF. Among them are more than 600,000 children.
The rate at which each state is disenrolling people varies wildly — 72% have been disenrolled in Texas, versus only 8% in Wyoming. And as each state began their disenrollment process at different times, experts also note that the reported disenrollment estimations are undercounts.
"It is the best count we have at the moment, but it does not include disenrollments in all states," said Jennifer Tolbert, the director of the State Health Reform and Data Program at KFF. "Again, because not all states have made data publicly available, and it doesn't include all months of data reporting, even for the states where we do have some data available."
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Data also shows that 75% of disenrollments are due to paperwork issues.
"Those are disenrollments where the state does not have information to confirm that a person is no longer eligible, but for a variety of reasons, the individual did not complete the renewal process within the time frame allotted by the state, and so they were disenrolled anyway," Tolbert explained.
"Despite efforts by the state to update contact information, perhaps the individual never received the notice in the mail. Maybe they received the notice, but they weren't able to pull together the documentation the state required within the time frame allotted. Or maybe they just didn't even know what to do or what they needed to do, and so just didn't take any action at all."
The Centers for Medicare and Medicaid Services (CMS) has sent letters to state Medicaid programs highlighting concerns, including high rates of dropped calls, paperwork problems and call center wait times as long as 40 minutes in some states.
The letters from CMS stated that in several cases "the high percent raises concerns that eligible individuals, including children, may be losing coverage."
"If you can't get in through a call center to respond to a renewal or get help, or let's say you need language assistance, that is going to be a barrier for eligible people being able to renew their coverage," said Daniel Tsai, director of CMS's Center for Medicaid and CHIP Services. "We are digging in and partnering with and making sure that state Medicaid programs are doing what they need to help to help keep eligible people covered."
Tsai tells Scripps News there have been over a dozen states that paused to reinstate people or fix a problem, but CMS isn't naming which states specifically.
Disenrollments are expected to increase, but rates should level off, Tolbert says. Some impacted may get insurance through work or Obamacare plans, and some children will move to separate CHIP coverage. The disenrollment process will continue to the spring and summer of next year, depending on the state. A report from the Congressional Budget Office shows more than 6 million people who are dropped will end up uninsured.
CMS is emphasizing that people on Medicaid should be on the lookout for any notices that would come in the mail, and reply right away — making sure their state's Medicaid agency has their contact information up-to-date.
"What we care about is keeping people covered and connected to the health care coverage that they deserve," said Tsai.
A previous version of this story referred to KFF by its previous name. The story has been corrected.
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