S.T. 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,” S.T. says. She’s lived with the uncertainties and fears of a potentially deadly disease for two decades.
“If we had healthcare, it would be one less stress in our lives,” S.T. says. “My husband and son would live and thrive and I would be able to stay healthy, too.
Everybody could work and do better. People need healthcare.”
“Both my husband and son need to have an ultrasound of their aorta every three months to detect any abnormality and correct it with surgery,” S.T. says. “If their aorta ruptures, they could bleed out in a matter of minutes.”
“Not knowing is the big problem with Marfan,” S.T. says. “You die because you’re not treating it or don’t even know to avoid activities that could cause a rupture. The preventive and diagnostic health care they have received has saved their lives.”
The family’s underlying health conditions make them vulnerable to complications if they contract COVID-19. Her husband was in sales but is in quarantine now. S.T. is working as a personal elder caretaker to just one cloistered patient. She is the family’s sole breadwinner.
It’s a financially difficult time, with rent often overdue and the family pantry paid for with food stamps. Still, the most worrisome thing for S.T. is knowing that they will soon be losing their health coverage through Medicaid.
“If we had healthcare, it would be one less stress in our lives,” S.T. says. “My husband and son would live and thrive and I would be able to stay healthy, too. Everybody could work and do better. People need healthcare.”
*Stock Photo
Florida Health Justice Project engages in comprehensive advocacy to expand health care access and promote health equity for vulnerable Floridians.
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