Patients need more help to pay for rare disease treatment

In the fall of 2020, I experienced a slew of severe symptoms that makes the head spin just thinking about it.

These included a 104 F fever, chills, body aches, an upset stomach, a loss of appetite, abnormal physical weakness, deep purple bruising all over my body, an unrelenting migraine, severe lower back pain, bouts of uncontrollable shaking, and coughing up blood. Clearly, I needed medical care. But what happens when you become gravely ill in the U.S. and don’t have health insurance?

At the time, I was an uninsured single mother working full time. I originally had subsidized coverage through Medicaid, but it had been deactivated.

I’d been feeling unwell for months but couldn’t seek care because of the Medicaid issues. Despite making repeated phone calls, submitting updated information, and attending two appointments with social workers, I was still waiting for Medicaid to be reactivated. Finally, I had to go to the emergency room because I knew something was gravely wrong when my fever spiked and I started coughing up blood.

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July 3, 2025 by Shalana Jordan

Getting diagnosed was only the beginning of my aHUS journey

This was where my atypical hemolytic uremic syndrome (aHUS) journey began. aHUS is an ultra-rare disease that prompts the immune system to destroy red blood cells. It also causes tiny blood clots in major organs, which can lead to organ death. I was also in a flare from another disease called immune thrombocytopenia, and my immune system was destroying my blood platelets.

When I was admitted to the ER, I was experiencing kidney, liver, and heart failure. My attending doctors said I was dying and needed emergency surgery, blood transfusions, and immediate dialysis. To my dismay, in the middle of all of that, I had to figure out how to pay for the emergency care.

Eventually, a hospital social worker said she’d look into financial assistance. After a week in the hospital, one of the doctors managed to help me activate Medicaid coverage.

Then, I qualified for Medicare due to the dialysis, but only after I was declared to be in end-stage renal failure. That wasn’t an easy process because of my young age and the fact that I wasn’t officially considered disabled yet. Both the treatment for aHUS and the dialysis were costly. I needed dual enrollment in both Medicare and Medicaid.

If I didn’t have children under the age of 18 in my household, I wouldn’t have qualified for dual enrollment. Plus, Medicare generally pays for only 80% of my dialysis and aHUS infusions. In 2023, we moved to North Carolina, and I would receive a bill for about $5,000 every two weeks, which was the 20% that corresponded to me.

I recently moved to Florida, where coverage is better, but I’m still receiving collection notices from North Carolina, and I have a large, outstanding medical debt.

My point in sharing all of this is that I think our healthcare system in the U.S. is broken. It’s needlessly complicated, frustrating, and confusing. Many adults of working age become sick and are left behind by our system.

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.