How Trump’s Health Bill Puts People Like Me at Risk
The Fine Print in the Fine Print: How to Save Money Instead of People
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MONTH TWO:
NOTE FROM ROSIE: This post is part of a (now) monthly series detailing my journey of leaving my family and comfortable life while in my 60s to restore my health and find myself after a brutal long COVID diagnosis (with occasional added ingredients of my former life as a Mormon; my previous battle with both congenital heart defect and breast cancer; and how those things are impacted by the current Republican regime.) If you'd prefer to not receive updates in your inbox from this series, manage your subscription settings here.
✍️🛣️🧳Notes from the Road
This week, while I waited for final approval on my Medicaid application in my new state, a new law was signed that could yank that lifeline out from under me. It’s being sold as a way to “empower” people and “get them back to work.” But here’s what it means in real life — my life.
I’m 62. I live with long COVID, POTS, ME/CFS, hypoxia, and a slew of other big words and acronyms. The result? My body demands rest more than productivity. Exertion of any kind, including exercise or even overuse of the brain, is a big no. I don’t qualify for SSDI because I spent decades as a self-employed, stay-at-home mom and writer — labor that doesn’t come with retirement points or a government safety net. I applied for Medicaid because I need access to care, medication, and specialists just to function, and for the first time, without the luxury of private insurance. That application took me weeks to complete, not because I was lazy, but because my body and brain no longer operate at full speed. The application was multiple pages and required multiple document uploads. I gave it a little time every day, but it was always there, always something to work on, always a strain on my limited energy.
Then came Trump’s big obnoxious bill, where people like me won’t be officially considered disabled — not unless we can jump through enough bureaucratic hoops to prove it in just the right way. The new law says if you’re not officially on disability, you’ll need to work or volunteer 80 hours a month to keep your Medicaid. No exceptions unless your doctor fills out special forms, the state agrees, and you manage to keep all your paperwork in order, month after month, while being chronically ill. Miss a step? You’re dropped. Try again next year.
This Isn’t About Better Care. It’s About Fewer People on the Books.
Let’s be honest: this bill isn’t about saving lives. It’s about cutting them loose. That’s how they save money. They freaking let the undesirables die.
The Congressional Budget Office estimates that 16 million Americans will lose coverage under this new law — many of them chronically ill, disabled, or just plain poor. Medicaid work requirements have already been tried in Arkansas, where over 18,000 people lost coverage in just a few months. Most were eligible — they just couldn’t navigate the system. No job appeared. No miracle happened. They just disappeared from the rolls.
That’s the real goal here: not better care, but fewer people to care for.
The bill doesn’t even pretend to improve health outcomes. It guts Medicaid funding by over $1 trillion, speeds up nursing home closures, and threatens to shut down rural hospitals. It removes drug price controls that were just starting to help people on Medicare afford their prescriptions — giving that money back to pharmaceutical giants. And for what? To win headlines. To show who's boss. To balance budgets on the backs of the sick.
Like the old saying goes—But wait, there’s more:
They didn’t repeal protections for pre-existing conditions — they made them useless.
As a cancer survivor, protection against pre-existing denials is huge for me. If you’ve ever been denied insurance, hit a lifetime cap, or lost coverage because of a diagnosis, you know what it was like before the ACA. And Trump’s new budget bill doesn’t take us straight back to that awful time — it’s sneakier than that.
They say protections for people with pre-existing conditions are still there. But here’s the trick: they’ve made it a lot harder to get or keep insurance in the first place, especially if you're sick, poor, or both.
Let me break it down:
1. Pre-existing condition protections? Still there — but good luck using them.
Technically, insurance companies still can’t deny you for having a condition like cancer, diabetes, or long COVID. But what happens if you lose coverage due to a missed deadline or work requirement and can’t get back in until the next open enrollment?
You're just uninsured, plain and simple. And if you're desperate, your only option may be a short-term plan that doesn’t have to cover pre-existing conditions at all.
→ Short-term plans can legally exclude your diagnosis
So yes, protections exist — but only if you're already covered and never slip up.
2. Insurance is about to get skimpier.
The bill pushes more people off full-coverage plans and into cheaper, stripped-down versions. These so-called “leaner” plans don’t have to follow the ACA’s rules about covering:
Mental health
Prescription drugs
Rehab or physical therapy
Maternity care
Some even bring back annual and lifetime limits, which were banned under Obamacare.
If you live with chronic illness, that means your treatments might get cut off halfway through the year — or not covered at all.
3. Fewer people insured = higher costs and fewer options for the rest of us.
As millions lose coverage from Medicaid rollbacks and new red tape, fewer people are enrolled in the ACA marketplace plans. That drives costs up for everyone else, and may cause insurers to pull out of certain states altogether.
That’s how the whole system starts to crumble — not from one big explosion, but from quiet erosion.
4. Losing Medicaid doesn’t mean you fall back on something else.
Here’s what scares me: if you lose Medicaid due to these new work rules or deadlines, you’re not eligible for subsidies to buy an ACA plan. You get kicked out of the system and priced out of the market.
→ The bill explicitly blocks people who lose Medicaid due to work rules from accessing subsidized ACA coverage
That means no plan, no help, and no care — for people who are already medically fragile.
If you’re poor and sick, this bill tells you to bootstrap your way out of illness — or go without. It turns “care” into a conditional benefit: prove you’re worthy, or get dropped. And the cruel irony? The people who need care the most — people like me — are often the least able to fight through a broken, hostile system.
They timed this so we’d lose coverage quietly — and they’ll pin it on the next election.
Because of how the bill is staged, these changes won’t really hit until after the 2026 midterms, with full implementation of work requirements by December 31, 2026, and possibly delayed until late 2028.
That timing matters. Elections will happen before people who aren’t paying attention realize what’s coming. After the election, the GOP will be able to claim a solid mandate from the people if they win, or blame it all on the Dems if they lose.
So this week, I wait for my approval letter and try to not let the worry get to me. I rest because I have to, not because I want to. I track my heart rate, my sleep, my meds — and now, I’ll have to track policy, too. Because with this law, the ground beneath our feet is no longer stable. It’s a trapdoor.
I don’t tell my story because I’m special. I tell it precisely because I’m not. For every one of me, there are hundreds more whose voices aren’t heard.
And they’re hoping we won’t notice until we’ve already fallen through.
What can we do? Don’t let this slip by unnoticed. Check on your own coverage, as well as your loved ones. Let your representatives know that you’re fully aware of what’s coming. Stay informed and stay loud.
🚗💨 In the Rear View
In case there are readers following my journey (I have a hard time imagining there are, but your feedback tells me otherwise) I like to give an update on my health at this new elevation. (I used to do this weekly but switched to monthly, in case you noticed). I’m happy to report that it’s much, much better. I’m still very much disabled, unfortunately, but my nervous system is so much calmer that I no longer feel like a human rollercoaster, at least very often. I’ve started focusing more on self-care practices to activate my vagus nerve, which I highly recommend for anyone with long COVID symptoms.
You probably can’t tell, but my writing has become easier on my brain and my eyes. So I’ll continue fighting against the powerful forces of inhumanity as long as my body is able.
Thanks for going along for the ride.
—Rosie
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Rosie
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I’m a journalist and novelist whose career was upended by long COVID—years of neurological and physical damage that still keep me in recovery mode most days and prompted an urgent move to lower elevation. But the state of this country lit a fire I couldn’t ignore. So I write when I can, from the margins of exhaustion, because staying silent isn't an option.
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That’s exactly what they’re hoping we’ll do.
We have to keep the future disaster of Medicaid (and SNAP) front and center, from now through the 2026 midterms. We cannot let people forget what’s down the road.