A recent study found that patients with both primary hyperoxaluria (PH) and chronic kidney disease (CKD) face greater healthcare costs as CKD stage progresses.1

The study, published in BMC Nephrology, was a retrospective administrative claims analysis aiming to emphasize the prevalence of PH by evaluating disease burden and cost of care in patients who had PH, PH with CKD, or CKD alone. Findings emphasize the importance of early PH diagnosis to prevent CKD progression and reduce healthcare costs.

PH encompasses a group of rare genetic metabolic disorders characterized by the accumulation of oxalate in the kidneys and other organ systems. Chronic, recurrent kidney stone formation and the accumulation of calcium oxalate in kidney tissue can cause CKD, which can ultimately progress to kidney failure. Due to its heterogeneous presentation and lack of awareness, PH prevalence is often underestimated and diagnosis is delayed, leading to poor outcomes and greater costs.1

“To our knowledge, this study is the first to describe the excess disease and healthcare burdens observed in patients who had PH who also experience CKD,” David Goldfarb, MD, clinical director of the division of nephrology at NYU Langone, and colleagues wrote.”These data indicate that patients who have PH with advanced CKD have 1.5-times higher average all-cause semi-annual healthcare costs when compared with patients who have PH with early CKD.”

The retrospective, observational claims analysis leveraged data from the Merative MarketScan Commercial Claims and Encounters databases and the Centers for Medicare and Medicaid Services Medicare Fee-for-Service Limited Data Set. The study included 3 patient cohorts:

  • All patients who had PH, defined by ≥ 1 medical claim indicating primary hyperoxaluria between January 2020 and December 2021
  • Patients who had PH with CKD, defined by a medical claim for CKD within the study period of January 2017 to December 2021
  • A matched CKD-only cohort of patients who had ≥ 1 medical claim indicating a CKD diagnosis within the study period and who were continuously enrolled for the 6 months immediately following the claim

Using patient data from these cohorts, investigators assessed comorbidity rates, treatment rates, semiannual healthcare visit frequency, and semiannual all-cause healthcare resource utilization and costs in both the unmatched and matched cohorts.

In total, the study included a sample of 326 patients with PH. Factoring in US population projection, data estimated around 4500 patients had a PH diagnosis in 2021. Among these patients, 37% were estimated to have PH with CKD, yielding a projected population of approximately 1600 patients. For those with PH that had progressed to CKD:

  • 65% had early CKD (stages 1-3)
  • 33% had advanced CKD (stages 4-5)
  • 2% reported an unknown stage

In matched analyses, patients who had PH with CKD faced a greater kidney stone burden (P 

Median semiannual total all-cause healthcare costs were also greater in patients who had PH with CKD than in patients with CKD alone, regardless of CKD stage ($54,154 in patients who had PH with advanced CKD vs $35,016 in patients with advanced CKD alone; $9784 in patients who had PH with early CKD vs $5572 in patients with early CKD alone).

“Together, these studies suggest that PH has been underdiagnosed and misdiagnosed, and that prevalence is likely higher than previously estimated,” investigators concluded.“We found that patients who had PH with CKD experienced larger clinical and economic burdens when compared with patients who had PH alone.”

References

  1. Goldfarb DS, Modersitzki F, Skaar JR, et al. Real-world burden of primary hyperoxaluria with chronic kidney disease in the United States: a retrospective administrative claims analysis. BMC Nephrol. https://doi.org/10.1186/s12882-025-04460-1
  2. National Organization for Rare Disorders. Primary Hyperoxaluria. January 23, 2024. Accessed October 22, 2025. https://rarediseases.org/rare-diseases/primary-hyperoxaluria/