Stacey has lupus, an autoimmune disease recognized for its distinctive butterfly-shaped facial rash that also attacks internal organs. Her husband and son live with Marfan syndrome, a connective tissue disorder that causes cardiovascular problems. Each of them needs medical monitoring, diagnostic tests and medications.
The family’s Medicaid coverage was abruptly canceled earlier this year when her son turned 18. They were only able to regain coverage because the COVID-19 pandemic has temporarily suspended cancellations during the national health emergency, she says. As soon as that is lifted, she fears the entire family will lose health coverage again because Florida has not expanded Medicaid under the Affordable Care Act. Florida Medicaid is limited to extremely low-income parents, children, or persons with disabilities. Florida is one of 12 states that have not expanded Medicaid.
“We live a precarious existence,” Stacey says. She’s lived with the uncertainties and fears of a potentially deadly disease for two decades.