In her 5 short years, Penelope has suffered more dire health conditions than most people do their entire lives. Since she was born, Penelope has been insured through Florida’s Medicaid program. But this month, Penelope’s mother, Gillian, found out her daughter’s Medicaid had abruptly ended. Penelope’s mother was never given written notice that Penelope’s Medicaid was going to end or why. Her occupational therapist was the first to notice Penelope was no longer on her list of Medicaid eligible patients As a result, Penelope’s weekly occupational therapy session and speech therapy were disrupted. Penelope also had labs due, and a refill for her prescription seizure meds waiting. In the last week Gillian has paid close to an unexpected $1000 in out of pocket medical costs. Penelope must have her seizure medication or she could die from status epilepticus. Her two seizure medications cost around $2000 a month on top of other medical costs.

Penelope has a rare genetic disorder Classic Galactosemia, in addition to epilepsy, a genetic disorder with unknown significance, and a Chiari malformation, all causing significant health issues since she was born. At 3 years old, Penelope stopped walking. Doctors found a chiari malformation and Penelope had brain surgery to relieve swelling and prevent paralysis. Chiari consequently caused a syrinx (cyst) on her cervical spine that prevents her from doing anything too active. Any sudden fall or impact could rupture the cyst, resulting in significant risk. Penelope has frequent absence seizures. She is unaware of what is happening and cannot respond to stimuli. Her seizures have recently progressed and a new medication was prescribed. Penelope also has possible concurrent kidney issues from either Galactosemia or her seizure meds. She was in the middle of ongoing assessment when her Medicaid was terminated. She needs to undergo additional inpatient testing to better understand the seizure disorder, and kidneys, but without insurance, her family cannot schedule that critical appointment.

For the last 2 years, Penelope has been participating in a national drug trial for the only possible treatment for Classic Galactosemia. There is no treatment or cure for Galactosemia. With drug trials, protocols require that the trial be randomized and double blind–meaning that one group of patients in the trial receives the actual drug being tested and the other group receives the placebo. The doctors and patients do not know which they are receiving. With no other treatment for Galactosemia they enrolled to possibly help her rare disease. Right after the devastating termination of Penelope’s Medicaid, her family learned that she was in the placebo group. It was a heart wrenching week for her family.

Penelope also has cognitive damage, developmental delays and tremors. As a result of these conditions, Penelope is unable to perform basic activities of daily living, such as getting dressed on her own. She is awaiting neuropsychiatric evaluation for autism and other issues. While seemingly “trivial” when considering her conditions, Penelope cannot attend any summer camps as the potential for injury while participating in activities is too high, even for swimming. For a happy and energetic little girl living in South Florida, this is incomprehensibly challenging.

Gilllian, a registered nurse who takes care of Penelope full-time, has spent countless hours on the phone to DCF, trying to understand why her daughter was suddenly terminated from Medicaid and what she can do to have it reinstated. “After calling the DCF office multiple times, for days, being on hold for hours and finally getting through to someone,I was told they could not give me any financial information or answers to the drop in Medicaid. The hours-long call was dropped when I reached appeals.” – Gillian said. “I called daily to Florida KidCare to apply. Then frantically called everyday for follow up. I was then told, Penelope was not eligible for KidCare and should be back in Medicaid. It’s confusing”.

“I feel so defeated and helpless. I do so much, I am always fighting for her care. She has a rare disease that’s not well understood. Most doctors don’t understand or know about Galactosemia. Continuity of care is vital. I am always vigilant with her insurance because she is so medically complex. Also having a rare condition, Penelope needs providers that understand Galactosemia. We have had the same doctors and specialists for 5 years. It is overwhelming knowing she needs so much medical care and has no insurance.”

In fact, because Penelope 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. Her Mom said, “I take it day by day. I prioritize her daily medical needs, paying for the care that is most important. However It’s not financially sustainable for us to continue like this. Penelope is a child with a rare disease. I am realistically nervous that some unforeseen medical issue is around the corner.”