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    Age: 2

    Duval County, FL


    A two year old with Cystic Fibrosis is suddenly cut off Medicaid, jeopardizing coverage of the “miracle” treatment medication used to treat her dangerous disease. Her family is confused and frantically seeking insurance for their daughter.


  • Until May 31, 2023, two-and-a-half year old Charlotte had been on Medicaid most of her life. When she was born, Charlotte did not have any health insurance since her family could not afford to buy it. However, as a young baby she was diagnosed with Cystic Fibrosis, a serious chronic and complex medical condition that damages the lungs and digestive system. A local clinic helped Charlotte’s family apply for Medicaid, and she has been on Medicaid continuously. Charlotte’s Medicaid provided coverage for the life saving medications and medical care needed to manage her respiratory, immune system and nutritional needs and complications caused by her Cystic Fibrosis. In early 2023, the FDA approved a new drug for children Charlotte’s age with Cystic Fibrosis, and Charlotte’s doctors immediately prescribed it for her. The drug, which is hailed as a “miracle,” is dramatically extending the lives of people with Cystic Fibrosis. The drug costs $26,000 per month; there is no way for Charlotte to access the medication without insurance.


    But suddenly in May, 2023, Charlotte’s mother, Chianne, found out her daughter’s Medicaid was abruptly ending on May 31. Chianne did not receive an email advising her to login to ACCESS her account and read a notice concerning her daughter’s Medicaid. Indeed, since Charlotte had been on Medicaid since her diagnosis as an infant, Chianne had never gone through the process of redetermination with DCF. Instead, she found out on May 30th from her daughter’s Medicaid managed care company that Charlotte’s Medicaid was ending the following day. Chianne then found the notice, a confusing 12 page document with inconsistent information about multiple benefit programs concerning their whole family. She spent hours on the phone with DCF and an advocate from her daughter’s clinic to try to make sense of what was happening. One day later, her daughter lost her Medicaid; she suddenly had no insurance.


    Charlotte relies on prescribed enzymes she must take each time she eats, a breathing machine that Medicaid paid for, breathing medications multiple times each day, and a medical daycare paid for by Medicaid that can administer her medications and utilize the machines she needs for treatments. Her special daycare for medically complex children–where she learned counting in English and Spanish, read books with her teachers and learned about others with disabilities–abruptly ended when she was taken off Medicaid, and now this happy and energetic toddler must stay home all day. Her mother is also caring for her four month old baby and in school full time, all of which is tremendously challenging to manage in addition to providing Charlotte’s care around the clock. Her parents had to take Charlotte to the emergency room this month for breathing problems, and the doctors had to take x-rays and run expensive tests. The family had to pay full price for medications needed to treat Charlotte. They are fearing a hospital bill they can’t afford because she doesn’t have insurance.


    Since learning of her daughter’s sudden loss of insurance, Chianne had been trying to enroll her in KidCare, a program for children whose families are over income for Medicaid. After being told by KidCare staff that application processing is delayed due to all the referrals from the Medicaid unwind, Chianne just learned that Charlotte was approved for Medi-kids, part of the KidCare program. But coverage does not start until July 1.

    "I understand if my family is no longer eligible for Medicaid, but the way this happened is horrible. We had no idea since our daughter has been on Medicaid for more than two years. I don’t want any families to have to go through this. I didn’t have a chance to get Charlotte other health insurance.”

  • Indeed, because Charlotte has been diagnosed with a medically complex condition, under Florida’s Medicaid Redetermination Plan (at p. 12) she should have been in the last group of individuals to have their eligibility redetermined and thus able to remain on Medicaid continuously until March 2024. But instead, Charlotte, a child who clearly needs daily medical care, abruptly lost Medicaid and must survive the month of June without insurance.

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  • We are grateful to the National Health Law Program (NHeLP) for their support of the

    "Medicaid | The Lived Experience" STORIES Project.

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