As an aHUS patient, finding affordable prescription drugs is challenging

Obtaining life-sustaining drugs should be easier than it is

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by Shalana Jordan |

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banner image for Shalana Jordan's column Walking on Water, which features a woman on the left walking on a greenish body of water.

Healthcare in the United States is always a hot-button topic. The U.S. healthcare system has long been criticized as being inadequate, expensive, not inclusive, restrictive, and so many other things. I received a crash course on the subject when I almost died three years ago.

Surprisingly, though, once I qualified for emergency healthcare and jumped through a few hoops, I had only a few problems with the system. But affording the medications I need to live has been a completely different story.

My medical journey began when I developed atypical hemolytic uremic syndrome (aHUS) after having COVID-19. As a single mom making less then $27,000 a year, I still didn’t qualify for reduced or affordable healthcare. So when I wasn’t feeling well, I chalked it up to working too much, sleeping too little, and being dehydrated.

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After months of ignoring mounting symptoms, I ended up in the ER on the brink of death. I was admitted to the ICU for nearly two months with multiorgan failure. I needed 18 blood transfusions, kidney dialysis, plasmapheresis, immunizations, and eventually, Soliris (eculizumab) infusions, which I still receive.

Thankfully, in the U.S., when someone is in end-stage renal failure, they automatically qualify for free or reduced healthcare coverage under Medicare. Medicare is a federal government-backed program that provides medical care to disabled patients, end-stage renal patients, and patients over 65.

I’d heard family members complain about large copays and Medicare not fully covering all of their prescriptions, describing it as “being stuck in an insurance donut hole.” Until recently, though, I hadn’t given it much thought.

Joining the chorus

My Medicare coverage ended a year after I stopped dialysis. But I was put back on Medicare when I was finally labeled as disabled earlier this year. Last month, I went to the pharmacy to fill my usual prescriptions and was told that my insurance no longer covered some of my medications. I was shocked!

Why wouldn’t a healthcare system designed to protect the disabled and elderly cover medications that are needed to live? At the pharmacy’s drive-thru window, I awkwardly had to scramble on my phone to find a discount card to apply to my medications. Why do we live in a system like this?

When I went to fill my prescriptions this month, my insurance suddenly began covering my medicine again, but it was still expensive. So back to Google I went to find another discount card. If I can Google any number of discount cards and read them off to a pharmacist, why are we even fooling around with such high costs?

I’m walking that fine line between acknowledging that overall, my healthcare experience has been mostly good, and talking negatively about my current prescription costs. It’s a little disheartening and stressful. And I assume other people deal with similar struggles.

The only light at the end of this tunnel I can share is the ability to Google discount cards that many pharmacies will accept. Simply do a search for “discount pharmacy cards” or “discount card for [insert medication]” and you’ll find a list of several. Most links will give you cheaper pricing for several pharmacies. Search your medications at each link, because some are cheaper than others.

There are also a handful of privately owned pharmacies, pharmacy ordering services, and grocery store chains with pharmacies that offer discounted medications. You just have to hunt high and low for the discounts, because being able to afford medications in the U.S. is like walking on water.

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.


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