The complications when healthcare program logistics vary by state

When you have a chronic or rare illness, healthcare becomes complicated. Adequate coverage, rising costs, and navigating unclear systems can be just as stressful as suffering with an illness. I recently moved to another state, and even though I began transitioning all of my medical care weeks before my move, here I am, more than two months later, still fighting for medical coverage.

In September 2020 I nearly died from atypical hemolytic uremic syndrome (aHUS), a rare disease I developed after having COVID-19. It caused multiorgan failure, permanent organ damage, and the destruction of most of my red blood cells and platelets. Being in the intensive care unit for almost two months and on dialysis for five months was just the start of my journey.

The permanent damage to my body made it too difficult for me to resume my career in education. So I tirelessly fought through the process to obtain disability insurance. It took two and a half years and losing almost everything in my life, but my disability status finally came through. And it’s been a godsend.

When you’re on disability in the United States, you eventually qualify for Medicare, a program for subsidized insurance that serves retired and disabled people. With aHUS, I’ll need monoclonal antibody infusions for the rest of my life. But this treatment exacerbates several of my comorbidities and causes side effects that are like those of chemotherapy, which makes my care more complicated. Without Medicare, I wouldn’t be able to afford the costly medication.

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My Florida struggle

But there’s a downside. Medicare part B typically only covers 80% of large medical costs. That leaves me with a bill every 14 days of over $5,000, and that’s just for the medication itself. That brings me to what I really want to talk about: dual enrollment in Medicare and Medicaid, which happens in special cases. Medicaid is another form of healthcare, this one subsidized by federal and state governments, that’s usually reserved for patients who are working age, have children living in their home, and make below a certain income.

Because of my condition, my work status, and having two children under the age of 18, I qualify for dual enrollment. But even so, I had no idea that Florida, my new home state, would be completely different from where I’d lived before.

In South Carolina, where I was living at the time of my diagnosis, I was instantly enrolled in both programs. During the period afterward, when I lived in North Carolina, that state expanded Medicaid in December 2023, which helped with my coverage. I assumed the process would be similar in Florida, but here, if you’re a single applicant and earn more than $180 per month, you’re ineligible for Medicaid.

So I’m declared “medical needy” here, which is a Medicaid status. “Medically needy” means I don’t qualify for Medicaid each month until my out-of-pocket medical costs exceed around $1,500. This program doesn’t factor in a person’s monthly cost of living, with bills such as rent or mortgage, utilities, insurance, and more. It only considers the $180 income cap, which to me is insane. I was told I’ll have to submit receipts every month, all month long, to qualify for Medicaid here.

Not only is this process complicated and slow, but it also jeopardizes my dual enrollment benefits.

Dual enrollment has extra perks and benefits, including an “extra benefits card” that helps pay for utilities, a prescription assistance program that helps pay for out-of-pocket medicine costs and over-the-counter costs, gym membership, and more. But what I’m experiencing in Florida might cause me to lose all of that.

Subsidized healthcare is already a slow and difficult system to navigate. I’m disappointed that Florida has added an additional layer of stress to that. I’m trying to get a case worker assigned to me to help with the Medicaid side of the problem. I’m also working with my doctors’ offices to submit all of my medical bills at the beginning of each month as a single interaction with the Medicaid system since I already know what a lot of my monthly out-of-pocket expenses will be.

In my experience, there’s no guidebook and very little help when it comes to navigating the healthcare system here in Florida. I’ve found it frustrating, complicated, and even unclear at times. That’s why it’s so important for patients with rare and chronic illnesses to interact and have social resources so we can share the ins and outs of making things happen with these healthcare programs.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.