Dawn Rotellini: Impact of Policy Changes on Patients

I guess from my perspective—so, I have a son with hemophilia and I had a dad with hemophilia and so looking at a lifespan going back decades of what does access to treatment and
care look like in a very expensive disease—So, with the onset of federal
changes for example the ACA, the Affordable Care Act, while people may
dislike or like certain parts of that, what it did for our population was made
sure that we had access to expensive therapies. So, for example, prior to the
ACA you would reach your lifetime cap in hemophilia by the time your severe son
with hemophilia A was 5 or 6 years old. Lifetime cap—what does that
mean for the family? That means you would have to change jobs. If that wasn’t a
possibility, you might have to get divorced, and those were
things that people were recommending for these rare disease families with super
high-cost medicines. Once the federal government started looking at the gaps
in coverage of these expensive diseases, it really opened up the possibility of
coverage for every family—and certainly nothing is perfect but—it really did
allow for no discrimination against pre-existing conditions, keeping your
children on your policy until they’re 26 years old, which helped in that college
and then first job gap that you wouldn’t drop off an insurance and, especially, if
you have a rare disease that’s life-threatening if you don’t have your
medicine. That allowed you to be able to go from young adult to
prosperous young adults. So, I think that some of those advancements
and acknowledgments by the federal healthcare system have been crucial for
keeping our population healthy and able to be productive citizens. That’s
really a big change in the last several years.

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