Proving You're Dying Enough

According to news reports, a federal judge denied a request by more than two dozen Democratic states to halt a Trump administration policy that would require Medicaid recipients with terminal diseases to prove they are too sick to work in order to be exempt from new work requirements that go into effect in January 2027.

Under this policy, low-income people with cancer, HIV, Parkinson's, and other life-threatening illnesses must prove they're too sick to work or risk losing their health insurance.

I have pulmonary fibrosis. It's terminal. There is no cure, no reversal, no plateau where it stops progressing. The lungs scar, capacity drops, and eventually the math stops working – you can't pull enough oxygen to keep the organs running.

I'm still working, in a limited way. I can still teach new riders, consult on security projects when the scope fits my capacity. But capacity is the operative word, and it's shrinking. There will come a point – maybe months, maybe a year or two – where I can't anymore.

Under this policy, when I reach that point, I would need to prove it. Not to a doctor I've been seeing for years. To a bureaucrat with a checklist, applying a standard written by people who've never watched their lung function numbers drop every quarter.

The cruelty here is not incidental. It's structural.

Terminal illness is not a stable category. It's a slope. Some days you can do the thing. Some days you can't. The question 'are you too sick to work' presumes a binary that does not exist for most of us. And the burden of proof falls on the person least equipped to carry it – someone managing a terminal diagnosis, medications, specialists, advance directives, and the ordinary logistical nightmare of staying alive while dying.

The policy goes into effect January 2027. That's the timeline. Prove you're dying enough, or lose the coverage that's keeping you alive while you prove it.

More than two dozen states tried to stop it. A federal judge said no.

So here's what happens next. People with cancer will be filling out work-capability assessments between chemo appointments. People with HIV will be compiling medical documentation to satisfy a standard that changes depending on who's reviewing the file. People with Parkinson's will be demonstrating they can't work on days when the tremor is bad enough to be legible to someone who's never seen them on a good day.

And some of them will lose coverage. Not because they got better. Because they couldn't prove they were sick enough, fast enough, to satisfy the requirement.

I've been around the medical system long enough to know how this goes. The standard for 'too sick to work' will be written narrowly. The appeals process will be slow. The coverage lapse will be immediate.

This is not policy. It's a sorting mechanism. And the people it sorts out are the ones who can't work, can't fight, and can't afford to lose.

I'm one of the lucky ones. I've got some runway. I can still advocate, still write, still make noise. But I'm watching the runway shorten, and I'm watching this policy go into effect, and I know what it looks like when the system decides you're not worth the cost of keeping alive.

It looks like a work requirement for the terminally ill.