The Back and Forth of the ACA
Implementing any formative policy is arduous. Call it partisan politics, call it division, the fact of the matter is enacting change is hard. The Affordable Care Act (ACA) has been bogged down in this kind of back and forth since it was passed over a decade ago. This sweeping legislation was not perfect, but it was a step in the right direction.
When we look at the COVID crisis, we see that the problems we tackle together get solved much more effectively. The creation of a COVID vaccine had bipartisan support and as a result is coming to market at light speed in comparison to conventional drugs.
Any insurance model requires a large number of people paying into the system that are not taking advantage of their coverage at a high rate. Car insurance companies need safe drivers. Home insurance companies need people with houses that are totally fine. The people who are ok pay for the people in crisis. The ACA was no different. Despite the politics, according to the New York Times, “Enrollment in the marketplaces has decreased slightly since 2017, but it has not shown any signs of a “death spiral,” when only sick people buy coverage and costs skyrockets as a result.” The program is working, but it is taking time.
The ACA has survived, but it is now in front of the Supreme Court for a third time despite the fact that, according to the National Organization for Rare Disorders:
“Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists and were often denied coverage altogether. Even when they could find coverage, insurers often put annual or lifetime benefit caps on their coverage, essentially removing all coverage once they hit a particular cost ceiling.”
A ruling is expected in June. In the meantime, we must keep moving forward and pushing government to focus on improving the lives of the people who need it the most. 2020 has been a year marked by division, but hopefully in 2021 and beyond we can embrace common ground to innovate on behalf of the rare disease community.