When staying alive means selling the things you love
We shouldn't have to rely on crowdfunding for basic medical care
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My wife, Jill, who is gene-positive with Huntington’s disease, and I don’t usually associate Legos with cancer.
Those are two worlds that feel like they belong on completely different shelves in life. Yet American households collectively owe at least $220 billion in medical debt, much of it tied to treatable conditions. Since Huntington’s entered our lives — Jill’s late father had it, and our daughter, Alexus, is also gene-positive — those numbers no longer feel abstract. They shape how we see every story about illness and money.
Recently, Jill was curled up on the couch watching a YouTube video about, of all things, Legos and cancer. She called me over and told me the story. A man with cancer needed life-saving treatment but he couldn’t afford it, so he began selling his extensive Lego collection. The person sharing his story online mentioned that an internet fundraiser had been set up so his family wouldn’t have to give up everything he loved just to keep him alive.
Jill recounted the story with a mix of disbelief and sadness. Then she went quiet. I watched her face shift, and I could almost see a light bulb appear over her head. She said it hit her that, as a way to get treatment, this man had to turn childhood joy into emergency currency.
Painful decisions
It also hit both of us that a person with cancer couldn’t afford care and might die as a result. The medicine existed, but it was locked behind a price tag. We also noticed that a well-wisher organized a crowdfunding campaign so the family could try to bridge the gap. We admired that kind of generosity, but Jill heard it as an indictment of a system that relies on the digital passing of the hat.
She turned to me and asked, “Why do we pay taxes and high insurance premiums only to find out that, one day, we might die from a treatable illness?”
I tried to answer but could not. It felt like buying a fire extinguisher, paying to have it inspected every year, and then discovering that, when your kitchen is on fire, it only sprays confetti.
She also wondered: “How many times have you heard about a GoFundMe set up for someone who is sick?” I did a quick mental count. The real answer was “too many.” We have seen fundraisers for neighbors, friends of friends, and total strangers. They blur together into a silent message: If you get seriously ill, you may end up relying on the kindness of people you’ve never met.
Her questions echoed loudly in our home as we navigate life with Huntington’s. Jill needs regular appointments, medications, and specialists who understand this rare, complex condition. Each time this occurs, we quietly brace ourselves for the financial side. We wonder what will be covered, what will be denied, and what might require an appeal or a painful out-of-pocket decision.
The Lego story might seem far removed from a neurodegenerative disease like Huntington’s, but to us, it feels like a warning. If someone with cancer has to sell treasured collections and lean on strangers online, what does that mean for families like ours, who may face years of progressive symptoms and increasing needs?
She will rely on a healthcare system that sometimes behaves like a vending machine that gladly takes your money but may or may not deliver what you asked for. The fact that so many people turn to crowdfunding for basic medical care suggests that the system is not just cracked — it’s leaking.
That night, after the video ended, we held hands and sat together in silence.
In a world where Legos and cancer can end up in the same desperate sentence, it’s difficult not to wonder what we will someday be asked to sell to keep Jill’s care going. Her questions about why we accept this, and why we pay so much for coverage that may fail us when we need it most, lingered in the air.
For families living with Huntington’s disease, those questions aren’t theoretical; they are as real as the bills that arrive in the mailbox.
Note: Huntington’s Disease 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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