When insurance guidelines hold more sway than they should

Warm tears welled up in my eyes, and I could feel my neck and face turning red. Something I’d long hoped for was slipping out of my hands. So I asked the question I was burning to ask: “I have dual enrollment. If Medicare won’t cover tirzepatide [often known by the brand name Mounjaro], will Medicaid?”

My new doctor shook his head. “No, unfortunately Medicaid is even less likely to cover GLP-1 medications,” he said.

I asked several other questions and proposed scenarios that could possibly get insurance to cave on the issue, and he said no to them all. I had to close my eyes and take several deep breaths to hold back the tears I didn’t want to cry. The last thing I needed was to cry in front of a doctor I was meeting for the first time. I was pissed, I was frustrated, and I felt defeated once again.

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April 30, 2025 News by Margarida Maia, PhD

New study supports use of Soliris as first-line pediatric aHUS treatment

My need is clear — and, so far, thwarted

Ever since I nearly died from the rare disease atypical hemolytic uremic syndrome (aHUS), I’ve had a multitude of health issues that will follow me the rest of my life. But I didn’t expect my sudden inability to lose weight.

Before I got sick in September 2020, I’d just lost 130 pounds by being more active, permanently changing my diet, and altering the times of day when I ate. I’d figured out entirely new and solid lifestyle changes that helped me lose weight easily for the first time in my life.

When I got sick, I spent nearly two months in the intensive care unit at the hospital. During that time I lost more weight — understandably so, given the stress my body was under while receiving dialysis, plasmapheresis, and continuing eculizumab (known by the brand name Soliris) infusions.

Once I got off dialysis, I noticed my weight slowly start to climb. I assumed that would happen, at least initially. I’d lost about 15 pounds from my usual weight, so I wasn’t concerned as I slowly got back to my normal. But then my weight continued to climb, no matter what I ate. I started taking a probiotic I saw on TikTok and lost 30 pounds. I was ecstatic.

But my weight loss eventually plateaued, and now I’ve been stuck at or around the same number — still 25 pounds over my personal ideal. And nothing is working. I’ve spoken with several other patients who take the same medication I do, and I’ve seen comments on my aHUS News columns, all noting weight increases with eculizumab or ravulizumab-cwvz (sold under the brand name Ultomiris) — even though weight gain is not one of the side effects listed with either drug.

I needed to find out if a weight-loss medication would be safe for my kidneys, which were damaged more than other organs when I was near death and now only function between 16% and 20%. Most weight-loss medications aren’t safe for me, but tirzepatide is. It’s not only safe, but has also been shown to help kidney and heart patients.

That’s when I asked my new primary care physician to prescribe it, which brings me to the opening of today’s column. My insurance, through Medicare, denied it. My secondary insurance, through Medicaid, also denied it. Even with a rare disease, long-term kidney damage, long-term heart damage, hypertension, edema, May-Thurner syndrome, morbid obesity (I’m short, so my body mass index is high), and pre-diabetic symptoms, I was still denied.

Tirzepatide has helped many patients lose as much as 20% of their body weight. That kind of loss would make it easier for me to move around, and it’d take a lot of stress off my kidneys. It’d also help with the constant pain I experience from eculizumab and edema. There are so many reasons why a weight-loss medication would benefit me, yet here I am being denied.

Why do insurance companies have so much power and say over what medications and procedures we need? Why is someone who isn’t a trained medical professional — or worse, is an algorithm — able to make decisions about my health? That’s just another punch to the gut on the roller coaster of living with a chronic illness. Two steps forward, three steps backward.

I understand the anger and frustration other people in the United States feel as they deal with insurance companies. My next plan of action is to call my insurance company myself and argue for my needs. I also need to find out if I have a case worker with my new insurance plan. One would think that the company that has to pay for my healthcare would want the healthiest, best version of me, but that doesn’t seem to be the case.

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.