A new study published in BMC Nephrology found that people living with chronic kidney disease (CKD) face significantly higher healthcare costs and worse outcomes when their kidney disease is diagnosed late.

The study focused on patients who have both CKD and primary hyperoxaluria (PH), a rare genetic condition that causes harmful calcium oxalate buildup in the kidneys. The findings show just how important early screening and diagnosis are, not just for saving lives, but also for reducing the financial and emotional strain of advanced kidney disease.*

What Is Primary Hyperoxaluria (PH)?

Primary hyperoxaluria (PH) is a rare genetic disorder in which the liver overproduces oxalate, a natural chemical that the body normally gets rid of in urine. When too much oxalate builds up, it combines with calcium to form recurrent kidney stones and deposits in the kidney tissue.

Over time, this can cause inflammation, scarring, and CKD, eventually leading to kidney failure. Because PH can look like more common conditions (like repeated kidney stones), it’s often misdiagnosed or diagnosed too late, when the kidneys are already damaged.

“PH prevalence is often underestimated and diagnosis is delayed, leading to poor outcomes and greater costs,” said Dr. David Goldfarb, clinical director of nephrology at NYU Langone and senior author of the study.

What the Study Found

The study analyzed insurance claims from more than 300 people with primary hyperoxaluria between 2017 and 2021, using national databases including Medicare and MarketScan.

Key findings included:

• About 37% of people with PH also had CKD.
• Among those with PH and CKD:
  • 65% had early-stage CKD (stages 1–3)
  • 33% had advanced CKD (stages 4–5)

Researchers compared this group to patients with CKD alone and found major differences in healthcare use and costs:

• Patients with PH and advanced CKD had average six-month healthcare costs of $54,154, compared with $35,016 for those with advanced CKD alone.
• Even among those with early CKD, costs were $9,784 for PH patients versus $5,572 for CKD-only patients.

In other words, having PH with CKD nearly doubles the cost of care, especially as the disease progresses.

“Patients who have PH with advanced CKD have 1.5-times higher average healthcare costs than patients who have PH with early CKD,” the authors wrote.

The study also found that PH patients had higher rates of kidney stones, more medications, and more medical procedures, all contributing to increased expenses.

Why This Matters for CKD Patients

The study highlights two critical lessons for anyone living with kidney disease, or at risk of it:

1. Early diagnosis saves money and lives. When CKD is caught early, treatments can slow or even stop progression to kidney failure, preventing hospital stays, surgeries, and dialysis.
2. Rare conditions like PH need more awareness. Many people with recurring kidney stones or unexplained kidney problems might actually have PH or another rare disorder, but it goes undetected without proper testing.

As Dr. Goldfarb explained, this lack of awareness can delay treatment and dramatically increase both medical and financial burdens.

What You Can Do

If you live with CKD or have frequent kidney stones, there are steps you can take to protect your health and ensure nothing is overlooked:

• Talk to your doctor about the cause of your CKD. Ask whether genetic or metabolic testing might help identify underlying conditions like PH.
• Stay on top of regular check-ups. Monitoring kidney function through blood and urine tests helps catch changes early, before serious damage occurs.
• Ask about personalized treatment options. If you have rare or complex CKD, specialized care from a nephrologist familiar with conditions like PH can make a big difference.
• Stay informed. The more you know about how CKD develops and progresses, the better equipped you are to manage it and advocate for your health.

Early Detection and Equity

This study also raises important questions about diagnostic delays and access to care in CKD more broadly. People without access to regular testing or specialists often get diagnosed later, when their kidneys are already severely damaged.

Early diagnosis doesn’t just improve health outcomes; it can also reduce the high costs of advanced CKD treatment, both for individuals and the healthcare system.

As the authors concluded, improving awareness, screening, and timely diagnosis for rare kidney conditions like PH could reduce overall costs while improving patient quality of life.

* HCPLive Publication (October 23, 2025). “Delayed CKD Diagnosis Attributed to Increased Healthcare Costs”. hcplive.com

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