Handling the financial burdens of a chronic illness, part 1

This column is the first in a three-part series about the financial burdens of rare diseases and chronic illnesses.

$1.3 million. $1,500. $84,000. Those are some of the costs I was left with when I nearly died of atypical hemolytic uremic syndrome (aHUS) in 2020.

My hospital bill for six and a half weeks of intensive care was $1.3 million. Outpatient dialysis was just over $1,500 a week. And the monoclonal antibody infusion of Soliris (eculizumab) that I’ll likely need for the rest of my life is billed at $84,000 per dose. These are just a few of the expenses I needed to worry about while trying to stay alive.

Financial burdens and chronic illness seem to go hand in hand. An article from the University of Michigan School of Public Health notes not only the high total costs of procedures and medicines, but also the increasing out-of-pocket costs, lost wages, and lifestyle changes.

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January 19, 2023 by Shalana Jordan

Sick and Unemployed: What Do You Do When the Money Dries Up?

Handling bills after my crisis

In my case, paying all of my new debt was the furthest thing from my mind when I was lying in the intensive care unit. It started when I’d gone to the emergency room, very ill and weak, assuming that I had COVID-19 (for a second time). Little did I know I was in multiorgan failure.

There I was, with no health insurance and bills piling up while I was missing who knows how many days at work. I had no clue how I’d pay for my medical emergency or my lifesaving care. But those bills were the least of my concerns. What about my home? My utilities? My other bills? My children’s needs? I was clinging to life for weeks in a hospital bed, but my bills and responsibilities in the “real world” didn’t pause.

More numbers: $4,400 was the income I lost from missed work just during my hospital stay. Next was outpatient dialysis for another three months, which prevented me from working. I was a part of the nearly 60% of the U.S. population who lived paycheck to paycheck in 2020. Everyone in this cohort is just one missed paycheck away from poverty and financial ruin.

At that moment, I was terminally ill. Most people would think there’s infrastructure to help people in these situations. As a U.S. citizen, I’ve paid taxes since I was 16, helping to fund unemployment, disability, Medicaid, Medicare, and related “safety net” programs. However, I had trouble accessing these programs when I was suddenly ill. Others face the same dynamic.

In the U.S., our government offers subsidies to help people in need. They include unemployment, Medicare, Medicaid, the Supplemental Nutrition Assistance Program (SNAP), Social Security Disability Insurance (SSDI), and Supplemental Security Income.

But these programs can require that an individual be “declared” disabled, have children under 18 in the home, or work 20 hours a week or attend school. And when I left the hospital, too weak to even climb stairs, I didn’t meet any of those requirements. (My children were with family in another state because I lost my free child care with my job.)

To receive unemployment income at that time, I was required to apply for jobs each week and be “able and willing” to work if I were accepted to any of them. But I couldn’t work because I was too sick and had dialysis and antibody infusions taking up four days a week.

To receive SNAP, I was required to work 20 hours a week or be enrolled in school and have children under 18 in the home. I didn’t meet this requirement either. I was ineligible for Medicaid insurance, as well.

Medicare is another medical insurance subsidiary, but that’s only available to those 65 or older or people declared disabled. With the damage my body sustained and the muscle mass I lost, I was very much a disabled person. But I hadn’t been legally declared so. After a few weeks of this battle, I qualified based on my need for outpatient dialysis.

Next I applied for SSDI. That arduous and disheartening experience took two and a half years to complete. The money did eventually come and was absolutely worth the effort to get it. But my bills didn’t wait two and half years to be paid. I lost my home and my car.

None of what I’ve described covers utilities, car insurance, property taxes, transportation to treatments, and anything else involved in cost of living. It’s a lot on a person just trying to make it from one day to the next.

I remember feeling overwhelmed and clueless; I didn’t even know where to look for help. I remember sobbing on the phone asking my disability case worker, “What am I supposed to do? I’m going to lose my home.”

It made me realize there’s a massive gap in our country’s infrastructure for supporting “able-bodied” citizens who suddenly become sick or injured and unable to work. Which leads me to wonder, how do we survive the crisis period of a medically influenced financial emergency?

Check back next week for part two of this series, which will focus on available aid and resources.

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.