ANCHORAGE, Alaska — When Matt Findley’s son Will was 3 months old and wouldn’t stop crying it didn’t immediately occur to his family that the cause wasn’t hunger or a soiled diaper but something much more serious.
“He’s crying, which is what 3-month-olds do,” he said. “Finally we realized something was wrong.”
A CT scan showed a spontaneous brain bleed — one of the most serious complications of Will’s hemophilia, a condition in which the blood fails to clot normally. Doctors rushed him into surgery, where they removed over a quarter of his brain.
The initial prognosis was bleak: it was possible he would be unable to walk and talk. Will exceeded those expectations, Findley said, and is now 11 years old and succeeding in school. But for much of his early childhood, he was “his own medical industry,” according to Findley, needing numerous therapies a week.
Findley and his wife were far from indigent; they were lawyers who had health insurance through their jobs. But when the bills for Will’s hospitalization and follow-up care approached $150,000, which was more than their plans would cover, they applied for and received Medicaid assistance on the basis of Will’s disability.
And they benefitted from Medicaid in another, less obvious way, Findley says. The treatments Will needed were only available because of the existence of government programs that pay the bills for most patients.
“One thing folks don’t understand about how Medicaid disability works is that most of those therapists, most of those services that are in place for disabled children are in place because of Medicaid,” Findley said. “You take away Medicaid funding and they’re gone. It’s a bit of a broad generalization but it’s not like you can just go purchase those services on the market.”
Slashing Medicaid, as the health care proposals in the House and Senate would do, could endanger the existence of these key disability services. But the bleeding disorder community, which Matt works with as president of the Alaska Hemophilia Association, would stand to lose in other ways if key elements of the Affordable Care Act were rolled back.
Before the ACA, patients with bleeding disorders were vulnerable to lifetime caps on how many benefits they could receive. The prognosis for those conditions is much improved from what it once was, with life expectancy within normal range with proper treatment. But medications don’t come cheap — the medication used to…