We Are Not Disposable

Since the COVID public health emergency ended, more than 650,000 people in my state alone have lost Medicaid coverage. Nationally, Medicaid and CHIP enrollment dropped 19% between March 2023 and January 2026. Roughly three in ten U.S. adults struggled to pay for health care in the past year, and 36% skipped or postponed care because of cost.

And projected cuts of more than $900 billion from Medicaid — part of over $1 trillion in health program reductions — are expected to push tens of millions off coverage by 2034.

I am one of them.

Not because I make too much money. I make under $10,000 a year.

Not because I suddenly became healthy. I have documented neurological disability spanning 20 years. Specialists. Records. Confirmation. Paper trails thick enough to choke a system.

I was removed during Medicaid “unwinding.”

Denied renewal.
Buried in paperwork.
Required to prove disability for the umpteenth time.
Given impossible documentation deadlines.
Given conflicting information by multiple agents.
Cut off after hours on hold.
Pressed “3” for callbacks that never came.
Left messages that were never returned.

While sick.

While managing dystonic storms, adrenal instability, long COVID flares, sleep loss, and missed treatments.

While rationing medication.

While losing work time — time that could have generated income and helped other people.

What was intended to be a month of writing during Rare Disease Month became a month of bureaucratic combat.

And this isn’t new.

I spent nearly two years fighting the State Teachers Retirement System in my state — repeatedly denied. All while board members were being removed by a court for “deceptive and disruptive” conduct fundamentally incompatible with their duty to protect educators’ financial security.

Despite public outcry, $8.5 million in performance bonuses was earmarked for fiscal year 2024, with individual staff packages increasing by $50,000 to $300,000 annually in previous years.

Meanwhile, retirees received a total of only 4% in cost-of-living adjustments since 2017, when they had expected 3% annually — leaving them roughly 20% behind projected benefit levels.

And their “disinterested physicians” routinely overruled the diagnoses of actual treating doctors.

After nearly three years of fighting, I was forced into SSDI qualification in January 2026 — another maze. Another proving ground.

All while headlines and political theater made a spectacle of “cutting waste.” I can’t help but picture Elon Musk on stage with his chainsaw — and the cheers that followed. Many of us knew exactly who would be under that blade.

Not fraudsters.

Not billionaires.

Not the healthy and insulated.

The chronically ill.
The disabled.
The rare disease community.

Survival of the fittest, baby.

Except here’s the part they miscalculated:

We are already fighting to survive every single day inside our own bodies.

You cannot bureaucratically exhaust people who have endured neurological storms.

You cannot intimidate people who have faced near-death on living room floors.

You cannot shame people who have spent two decades proving dystonia is real, debilitating, and life-altering.

What enrages me most is not the paperwork.

It is the implication.

That we are expendable.

That we are line items.

That we are “cost centers.”

That rare means irrelevant.

No.

Rare means resilient.

Rare means navigating systems designed without us in mind.

Rare means building small businesses because we know institutional support will not save us.

Rare means bending but not breaking.

Yes, I am angry.

But anger is energy.

And I am using it.

I refuse to let systemic administrative purging or political posturing determine my destiny. I refuse to let corruption shrink my calling. I refuse to let broken systems define my worth.

This is Rare Disease Month.

So here is the truth:

We are not disposable.

Not in my state.
Not in this country.
Not in this community.

If you are healthy and wealthy, understand this: the system you cheerfully dismantle today may be the one you rely on tomorrow.

If you are navigating this fight while sick, hear me clearly: you are not weak. The system is heavy. That is different.

And if you have the strength right now — advocate.

Share these stories.
Contact your representatives.
Ask hard questions.
Demand transparency.
Pay attention to where funds go and who benefits.

Do not let rare disease families fight in silence.

Because survival of the fittest is not healthcare policy.

And we are not disposable.