Medical Debt in Rare Disease
Annemarie had no medical debt — until her rare disease diagnosis changed everything. She’s one of 232 people across 39 states who told ERDC what it actually costs to stay alive with a rare disease.
The answers were sobering. More than half of respondents (52%) had no medical debt before their diagnosis — the disease itself, not financial fragility, created the crisis. Seven in ten carry medical debt despite having insurance. More than half spend at least five hours a month just managing healthcare costs, on top of managing their disease. And 73% receive care at hospitals legally required, through the 340B Drug Discount Program, to pass savings on to the people who need them most — savings many say they never saw.
These aren’t abstractions. They’re people rationing medication, skipping doses, and going without support they didn’t know existed. Seventy-five percent of respondents gave us their contact information because they want to tell their story directly to the people who write the policies that shape their care.
We don’t chase cures. We clear paths. This report is part of that work — data and testimony our community rarely gets the chance to share, now headed to Congress.
Read the full report below.
This survey and report were made possible with support from Amgen and AstraZeneca. ERDC was solely responsible for the design of the survey, development of survey questions, and all analysis and findings presented here.
