I did everything right, and still can’t get health care I need in Missouri | Opinion

I’m a newly disabled grandmother of five, mother of four and a kidney donor. I made sacrifices when the system needed me, and now I’m being left to suffer for months in agony because I can’t afford the simple surgery required to treat a dangerous condition.

This isn’t because I was irresponsible or failed to work hard enough to care for myself in middle age. Before losing my job as a legal researcher, I was insured. I had a neurologist, primary care provider and a dentist. But circumstances change, as they have for so many Americans over the past two years.

How did this happen? It started with the Medicare gap, and was complicated by the end of enhanced Affordable Care Act subsidies. The fact that I chose to get a bronze ACA plan to bridge the gap added fuel to the fire because it made me ineligible for charity care, and the fallback Medicaid “spend down” was the insult that added to the injury.

In other words, this didn’t happen to me because I rejected insurance irresponsibly. It happened because I bought it. So — since I’m learning about administrative attrition firsthand — let’s explore the brutal math behind America’s subsidy cliff.

New Social Security Disability Insurance recipients must wait two years for access to Medicare. Learning this, I applied for Medicaid, but discovered my $1,866 SSDI was just about $100 per month more than I needed to qualify.

They told me to get ACA Marketplace insurance instead.

Before ACA subsidies ended, the cheapest Silver Saver plan with affordable spending caps would have cost me nothing. Now it costs $136 per month, with $3,300 in capped copays. Averaged out, that’s about $411 a month, about $314 more than the $100 that disqualified me for Medicaid coverage. I couldn’t afford 22% of my limited income, so I chose a cheaper Ambetter Health plan and hoped for the best.

But disability makes medical emergencies predictable. Now I’m facing an infection that’s triggering my excruciating trigeminal neuralgia with no access to treatment. Since I have insurance, I didn’t qualify for charity care with University Health. Instead, they offered to help me enroll in Missouri’s Medicaid Spend Down program, but I discovered this program requires me to spend $736 a month before they cover additional costs — $639 more than the $100 that disqualified me for Medicaid.

The penalty for being slightly above Medicaid limits can exceed the income that made someone ineligible by multiple times. In that gap, people don’t merely delay care. They lose teeth, organs, mobility, housing and — too often — their lives.

When the system needed me, I stepped up to the plate. I sacrificed a part of my body knowing that it may affect my future health. I was told that the system would be there for me when and if I needed it. My sacrifice generated more than $1 million in total lifetime welfare and health gains for the recipient and system. Yet here I am, $100 “too rich” for care.

But this isn’t just about me. I’m still alive to fight, with a Juris Doctor degree and administrative experience. I’m going to survive this, but so many others won’t. A landmark 2009 study showed about 45,000 Americans died yearly from this type of institutional cruelty of lacking health insurance — and that was before Congress cut off health care and aid for millions.

I know a family about to lose all funding for two wheelchair-bound young boys with massive health issues. They’ll have no support for their supplies, health care aids and living expenses. If I could give them my care, I would.

However, none of us will receive care this year.

Is this the moral standard that proponents of the One Big Beautiful Bill say will make our nation strong again?

Deb Tharp is a legal researcher, policy writer, kidney donor, mother of four and grandmother of five. She lives in Independence.