Hollie Amadio was diagnosed with hereditary angioedema at 25 after first experiencing symptoms at 16 and later with multiple sclerosis. She shares questions that help with predicting how difficult treatment access will be. Read her column, “Living Rare, Speaking Loud.”
Transcript
I underestimated how much of treatment would be about navigation rather than medicine.
I assumed the trade-off was side effects versus symptom control, but the real burden was learning how to access the care, the prior authorizations, the insurance denials, specialty pharmacies, and knowing who to call when something was stalled or went wrong. And to navigate that moving forward.
I always ask about the insurance process every single time. “What is the process? How long does the process take? Do I need to do anything? Is this a guarantee? Will there be a hiccup? And if so, like, what steps do I need to take? And what steps do you take? And what happens if this happens? And what do I do?”
