Economic Impact of Rare Diseases Tops $960 Billion

March 30, 2021

Rare diseases don’t just make life difficult. They also create a financial burden for patients, families, communities and the health care system. 

In fact, rare diseases cost the United States $966 billion annually, according to The National Economic Burden of Rare Disease from the EveryLife Foundation. 

Study Findings

For people living with one, or even several, rare diseases, the economic burden can be quite steep. The price of living with a rare disease is:

  • $418 billion in direct costs annually
  • More if you are a child living with a rare disease. Children have higher per-person excess costs than adults ($32,037 versus $26,408).

Rare disease patients require additional medical needs, often miss work, retire early or rely on the assistance of a caregiver. All to say, those indirect costs add up.

The indirect costs for rare diseases include:

  • Nearly $149 billion for absenteeism because patients cannot work or go to school because of their disease
  • $138 billion for presenteeism, when patients do go to work or school but have less productivity because of their disease
  • $136 billion for losses due to forced retirement.

Heath insurance helps mitigate some costs, but anything not covered by insurance is a non-medical cost that patients must pay out of pocket. Non-medical costs total up to $111 billion for patients and caregivers.

Non-medical costs include non-traditional or alternative treatments, over-the-counter drug therapies, dental surgeries and sometimes, the cost of caregiver support. Home and vehicle modifications, such as installing rails in the bathroom or having a wheelchair lift for the car, also contribute to the cost of living with a rare disease. 

Study findings confirm improving the lives of rare disease patients through continued research, new treatments and improved access doesn’t just have the potential to improve their lives. It can alleviate a significant and multifaceted financial toll, too.

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