CN: Child illness, cancer, late-stage capitalism
84 days ago, we learned about my daughter’s brain tumor- a craniophryngioma- a very rare diagnosis.
As of today, this diagnosis has cost $167,000+ dollars. At one hospital. Since diagnosis, we’ve been to four.
She’s had four MRIs, two CAT scans, multiple endocrinology visits (with their attendant blood draws), a brain surgery, follow ups for brain surgery, additional pediatrician visits, and ear/nose/throat follow ups. Today will be radiation session #12 out of 30.
Would our family gladly pay anything to have her healthy and headed toward a long life expectancy? Absolutely.
Am I aware of how fortunate she’s been to have had a life free of medical complications and costs until she was 8? Yes.
Do I know that lots of children with the same diagnosis need even more interventions and treatments? I do.
All of that knowledge, however, does not negate the fact that the United States has an absolutely stupid system for paying for healthcare.
My daughter’s craniophryngioma was diagnosed in an unusual way. Its first effect was to her eyesight, which was caught in her 8-year-old well child checkup. She was at her well child check because 1) we have insurance which covers these visits and 2) she has parent(s) with flexible schedules who can take her to an appointment like this during business hours.
She couldn’t pass the eye test part of the well child check, but everything else was fine. We don’t have vision insurance, but we do have enough spare cash to pay for an eye doctor (at Costco). So again, having the money and the time meant we could follow up on this strange part of the test. If we had been low on either resource, it would have been easy to put off follow up since she had no pain and the vision issue did not seem to be affecting her life at home or school.
That’s a thing to keep in mind- we pursued eye tests and then were sent for an MRI, ultimately resulting in a medivac to Denver for a child who was laughing, eating applesauce, and quoting Star Wars right into the ambulance.
If funds had been tight or non-existent or if we didn’t have insurance, it is likely that we wouldn’t have known about the craniophryngioma until it was truly affecting her life via blindness, stunted growth, or other unexpected conditions.
In all of this, we’ve been able to say yes to any treatment because we have insurance. Currently, it is through my husband’s work history (he’s retired now), but we could easily be insured through my work. In the United States, the most reliable insurance (theoretically) is linked to certain types of work. Having decent insurance coverage is often tied to work that expects certain levels of education, availability, and willingness to buy into the bulls*t of late-stage capitalism by finding one’s worth in one’s productivity for pay. Not ironically, the ability to have that kind of job is often tied to being healthy, which may depend on whether one has… insurance.
When I sit in waiting rooms, trying to pretend I’m not anxious, my eyes roam the other people in there. We all want the best for the ones receiving treatment. Yet, in any given waiting room, there are probably at least 4-5 families who have Go Fund Me accounts set up for medical costs. Some who have mortgaged houses or other properties. Some who are prepared to die with debt for the cause. Even my own insured family has relied heavily on the generosity of others to cover our deductible, co-pays, and travel costs.
This is more than the need for universal healthcare coverage- which is long overdue in the United States. This is about actually treating people with kindness, compassion, and mercy. It is about believing in human worth apart from productivity or potential output.
No one should have to wonder if their 8-year-old will ever be able to have her own health insurance because the now she has a “pre-existing condition”- the U.S. healthcare term for what the rest of the world calls “medical history”.
I realize that some people will say I should just be grateful that we have insurance and community support and that she’s getting great treatment.
To quote the singer Meat Loaf, “I’d do anything for love, but I won’t do that.”
The Reverend Julia Seymour serves Big Timber Lutheran Church (ELCA) in Big Timber, MT. She blogs at lutheranjulia.blogspot.com and readsallthethings.com. She contributed to There’s A Woman in the Pulpit and is President of the board of RevGalBlogPals, Inc.
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