New study: Economic burden of rare diseases estimated at $966B in 2019

March 10, 2021

In the most-comprehensive assessment of the total cost of rare diseases in the U.S. to date, the EveryLife Foundation for Rare Diseases’ estimates in its “The National Economic Burden of Rare Disease Study” that the estimated economic cost of 379 rare diseases in the United States totaled $966 billion in 2019.

The study calculates that individuals affected by the 379 diseases researched incurred direct medical costs amounting to $418 billion in 2019. These direct medical costs include expenditures for inpatient hospital or outpatient care, physician visits, prescription medications, and durable medical equipment.

More than half of the $966 billion cost estimate were indirect and non-medical costs, estimated at an additional $548 billion in 2019. Making these the primary cost drivers of the rare disease economic burden in the U.S. 

The study catagorized indirect costs as:

  • Lost productivity due to forced retirement, absenteeism, “presenteeism” (lost productivity occurring when employees cannot fully function in the workplace), and social productivity loss in community participation and volunteer work.
  • Costs of healthcare services not covered by insurance, including experimental treatments, alternative or non-traditional treatments such as acupuncture, as well as medical foods and dental surgeries.

Non-medical costs tallied by the study included paid daily care, necessary home and vehicle modifications, transportation costs, home schooling, missed schooling, and special education.

“This landmark report changes the conversation about rare disease by moving from back-of-the-envelope estimates to quantifiable data that reflect the true, massive economic impact a diagnosis has on families in the U.S. rare disease community,” said Annie Kennedy, chief of policy and advocacy at the EveryLife Foundation, in a press release on its website. “Based on these data, rare diseases represent an urgent public health crisis that demands additional research, enhanced awareness, and improved access to diagnosis, care, and treatment.”

Sanfilippo syndrome was among the 379 rare diseases included in this study.

“Thank you to the EveryLife Foundation for conducting this groundbreaking study that includes such as thorough perspective of life with rare diseases,” said Dr. Cara O’Neill, Chief Science Officer for Cure Sanfilippo Foundation. “Hopefully, the information is eye-opening to policymakers and helps inform their decisions.”

Access the complete study report at EveryLife Foundation’s website.

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