Ringing in the new year with public health insurance woes
I knew things would change when my mom retired. For one thing, there was going to be a whole third person hanging around our house; for most of my life, it was just my dad and me, with my mom winning the proverbial bread every day of the week. Our duo was going to become a trio. Exciting stuff, but a change nonetheless.
Unsurprisingly, insurance proved to be the biggest challenge. If you live with any sort of chronic illness, you’re probably familiar with the issue. Rare diseases like SMA require specialty care, which requires significant coverage, which requires high premiums and/or a whole lot of disposable income. The problem isn’t easily solved, especially if you live in the U.S., where disabled folks are penalized for making or saving too much money over the course of a year.
The whole situation leaves something to be desired. I’ve known that my entire life, but I didn’t really understand it until my mom retired. I had to consider things I’d never had cause to think about before, such as prescription drug coverage, premiums, and the likelihood of finding an insurance plan that vibes with all my various specialties.
The song and dance
Things were manageable for the first year or so. I was able to keep all of my medical professionals without moving clinics. There were growing pains, but for the most part, the worst seemed to be over with.
I won’t go into the details, because no one wants to hear about another person’s insurance woes. Suffice it to say that I was forced to switch insurance plans with no warning whatsoever. The problem was that, because I cannot afford anything but Medicare, certain clinics would no longer accept me as a patient.
Thankfully, all of my necessary specialties were unaffected; fields like optometry and dentistry, however, were not. Clinics I’d been going to for over a decade could no longer see me. It wasn’t the end of the world — it happens — but finding replacement providers proved to be a problem.
It seems that no one wants to bill Medicare.
The fallout
I won’t pretend to understand everything that goes into billing and healthcare. I’m sure there are valid arguments on both sides of the problem. All I know is that I live in a body that could not survive a 40-hour work week if its life depended on it.
I live in a country that punishes its disabled citizens by relegating us to what is essentially forced poverty; that leaves people with complex, life-threatening conditions no choice but to rely on subpar insurance that many of the nation’s practitioners largely refuse to work with.
Twice in two weeks, I was told a clinic was “at patient capacity” just days after someone from their office said that yes, of course, they could help me schedule an appointment; they just needed my insurance information to get things started! Perhaps that only applies to people with private insurance. I was told to ask Medicare for recommendations — a wholly unhelpful comment, because Medicare sent me to those providers in the first place.
It is exhausting, and it is only the beginning of January. This is my life with SMA, juggling practitioners like balls in the air — or, more accurately, plates. If I mess up the timing, if one hits the ground, it’s not just the plate that ends up smashed; it’s me, my health, my precarious combination of ever-evolving medical conditions that, in an ideal world, require not only constant surveillance but a generous amount of rest.
Rest? Who has time to rest when there are appointments to schedule and prescription denials to follow up on and, and, and?
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Note: SMA News Today 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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