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US Societal Economic Burden of an Inherited Kidney Disease Estimated at $7-10 Billion

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Analysis Group, Inc., a global leader in health economics and outcomes research (HEOR), announced the publication of the first study of the direct and indirect costs of autosomal dominant polycystic kidney disease (ADPKD) in the US. The study, conducted by Analysis Group in collaboration with Otsuka Pharmaceutical Development & Commercialization, Inc., estimated the total annual costs attributed to ADPKD in the US to be between $7.3 billion and $9.6 billion, equivalent to between $51,970 and $68,091 per individual with ADPKD.

ADPKD is the fourth-leading cause of end-stage renal disease in the US. It is characterized by progressive development of renal cysts and numerous extra-renal manifestations, eventually leading to kidney failure. With health care costs rising, there is a growing need for comprehensive estimates of the economic burden of such chronic and progressive diseases to inform clinical practice and lead to more cost-effective decision making. Prior studies reporting on the burden of ADPKD are scarce; studies that reported both direct and indirect costs associated with ADPKD were based on non-US populations, and studies based on the US population focused on direct costs only.

"The economic burden associated with rare diseases is often overlooked by physicians, payers, and regulators," said Myrlene Sanon Aigbogun, Director, Health Economics and Outcomes Research, Otsuka Pharmaceutical Development & Commercialization. "By publishing this study, we hope to increase awareness of the economic burden associated with ADPKD, and show that the costs associated with ADPKD go beyond direct health care costs."

The research team combined published literature and government and nonprofit data sources to estimate the base scenario cost (i.e., $7.3 billion) breakdown as follows:

  • $5.7 billion for direct health care costs (e.g., medical services, prescription drugs)
  • $1.4 billion for indirect costs (e.g., patient productivity loss from unemployment, reduced work productivity, premature mortality, and caregivers' productivity loss and health care costs)
  • $125 million for direct non-health care costs (e.g., research and advocacy, donor/recipient matching for kidney transplants, transportation to and from dialysis centers)

While the research team's focus was on a rare kidney disease, the article notes that the lifetime economic burdens of rare diseases can be similar to, if not greater than, those of more common diseases, if they translate to a greater cost per patient. "Rare diseases in general are subject to high unmet needs, in part due to limited knowledge of the diseases and the challenges of conducting intensive research to develop therapeutic options for small patient populations," said Martin Cloutier, a Vice President at Analysis Group. "Moreover, this study provides important insights that may help clinicians target their treatment strategies for improving or delaying disease progression that reduce a rare disease's economic burden."

The study, titled "The societal economic burden of autosomal dominant polycystic kidney disease in the United States," is published in the current issue of BMC Health Services Research.

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Schedule19 Jan 2022
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