Medicaid just added work requirements. Rare disease patients might lose their coverage. NORD CEO Pamela Gavin warns families to prepare now.
Nothing says healthcare efficiency like forcing people with debilitating genetic conditions to prove they're job-hunting between hospital visits. The same geniuses who brought you "let's make insulin unaffordable" now present "show us your resume or lose your dialysis." Bold move. Really threading the needle between fiscal responsibility and cartoonish villainy.
Gavin wants families to prepare. Prepare for what exactly? Explaining to a bureaucrat that Pompe disease is not a lifestyle choice? Submitting timesheets while their kid undergoes enzyme replacement therapy? The paperwork alone could kill someone with chronic fatigue syndrome. But at least we'll weed out the lazy patients who refuse to work through organ failure.
The policy assumes everyone on Medicaid is a basement-dwelling day trader who needs motivation. Turns out some people have actual medical conditions that prevent employment. Rare diseases affect thirty million Americans. Thirty million people who now get to play compliance theater while managing conditions most doctors can't even pronounce.
This is what happens when policymakers confuse "rare disease patient" with "guy who claims he's too tired to work because he stayed up trading meme stocks." One group has a documented chromosomal disorder. The other has a RobinHood account and undiagnosed narcissism. Hard to tell them apart apparently.
Families can prepare by hiring lawyers, collecting documentation, and praying their state caseworker knows the difference between muscular dystrophy and laziness. Or they can lose coverage and die. Those are the options Gavin is politely not saying out loud.
The work requirement won't save money. It'll just create administrative hell for sick people while politicians pretend they solved welfare fraud. But sure, let's make the kid with cystic fibrosis fill out job applications between breathing treatments.
Photo by Hush Naidoo Jade Photography on Unsplash
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