Grappling with the cost of healthcare while managing a rare disease

Several years ago, terms like “deductible,” “in and out of network,” “PPO,” “Medicaid,” “Medicare,” “Medigap,” “SNAP,” “prescription coverage,” and “disability” were thrust upon me suddenly and without warning. I had to learn them quickly to continue receiving lifesaving care.

I was sitting in a hospital bed, clinging to life with no answers in sight. My organs were failing, my blood was being destroyed faster than my body could produce it, and I was getting weaker with each passing hour. I didn’t know if I was going to make it out alive and see my babies again.

In September 2020, my life was forever changed by a rare disease called atypical hemolytic uremic syndrome (aHUS). I’d felt unwell for months and assumed I’d been working too much. But I rapidly declined during a vacation, and by the time I returned to work I could barely function. When I went to the hospital, I assumed I had COVID-19 and would receive a doctor’s note to rest at home.

I was very wrong.

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I hadn’t sought medical care sooner because I didn’t have health insurance. Here in the U.S., government-provided healthcare is not a standard part of our infrastructure. There’s subsidized assistance called Medicaid, which some people qualify for. But in my state, approval was based on income and whether you had children in the home. As a single parent making $12 an hour, I was above the income threshold and didn’t qualify. This meant I couldn’t visit a doctor without paying $200 or more upfront, in addition to other possible charges. I couldn’t afford it.

So I didn’t seek medical care until it was an emergency. Plus, I had two young children, a job, a car, and a home to take care of. I didn’t have time for the hospital!

But when I arrived, my medical team was shocked that I’d been able to drive myself there and deal with my young children. It turned out I needed emergency lifesaving interventions and had to be admitted to the intensive care unit.

I received dialysis, plasmapheresis, and blood transfusions daily, along with countless tests, exams, blood draws, and interviews. My bill climbed higher with each minute.

Time moved slowly in the ICU. Hours turned into days, which turned into weeks. As time passed, I became increasingly anxious. Not only was I literally dying, but financial demands were looming over my head. I’d been living paycheck to paycheck and had recently purchased my first home, which meant all of my savings had gone toward the purchase and remodel.

Missing weeks of work meant I had no income. Yet I had a mortgage, power bill, internet bill, and car insurance to pay no matter what. Plus, my two little boys needed food and other essentials while staying with their grandparents, who were on a fixed income.

To make matters worse, every few days a hospital social worker would stop by my room to discuss costs. It was awful lying in a bed slowly dying, but still having someone interrogating me about how I was going to pay for everything. It added an extra layer of stress. Trying to navigate the healthcare system from a hospital bed between tests and treatments was a huge endeavor.

My doctors saw my frustration and concern every time I asked when could I go home and return to work. But for the first four weeks that I was in the ICU, we didn’t even have a diagnosis.

In the U.S., patients on dialysis automatically qualify for Medicare, the federal health insurance program. But Medicare covered only 80% of my healthcare costs.

Luckily, one of my doctors was on the board for my state’s Medicaid program. She took it upon herself to spearhead getting me approved for Medicaid, which took care of my coverage gap — a huge weight off my shoulders.

Still, I ended up spending nearly seven weeks in the hospital, and my final bill was over $1.4 million.

Now my life is consumed with chemotherapy, doctor appointments, lab work, weight checks, vitamin panels, prescriptions, and long phone calls to handle insurance issues. Fortunately, when I moved to a different state a year ago, I was approved for disability insurance. I’d lost Medicare when I went off dialysis in 2021, but now I qualify again because I’m classified as disabled.

However, I don’t currently qualify for Medicaid, so I’m still receiving bills for thousands of dollars for the 20% that Medicare doesn’t cover. With the recent hike in chemotherapy costs, that leaves me receiving a bill for over $16,000 every two weeks! I’m not able to pay it, which is another stressor looming over my head.

I hope that Medicaid qualifications will change to include people like me. Until then, I’ll continue calling assistance programs to get whatever help I can. Thankfully, several offer help covering chemotherapy expenses. But there are many other costs incurred when living with a rare illness.

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.