Delayed Diagnosis of Rare Diseases Takes Staggering Economic Toll

The economic impact of a delayed diagnosis of a rare disease can result in up to $517,000 in avoidable costs per patient, according to a recent analysis from the Everylife Foundation for Rare Diseases and the Lewin Group. On average, the report found, it takes more than six years and nearly 17 doctor visits, hospitalizations, and other health-related trips, to receive a rare disease diagnosis after symptoms begin. Shortening the diagnostic odyssey saves money for individuals, caregivers, and the healthcare system, while improving health outcomes. We spoke to Annie Kennedy, chief of policy, advocacy, and patient engagement for the Everylife Foundation, about the diagnostic odyssey, the economic toll it takes, and what can be done to shorten the time to a diagnosis.