The Economic Impact of ADPKD on Patients, Payers


While physical and mental effects of Autosomal Dominant Polycystic Kidney Disease are top of mind for those personally impacted, as well as for nephrologists, the financial implications associated with this condition are often overlooked despite the fact that research has confirmed the economic burden of the disease increases over time for both the patient and the healthcare system.

Although it is considered a rare disease, Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common form of polycystic kidney disease, making up about 90% of all cases, and is the most common genetic kidney disorder. As a progressive disease, ADPKD worsens over time and results in a gradual loss of kidney function that evolves in five stages, with symptoms ranging from blood in the urine, high blood pressure, swelling in hands and feet, back pain and eventually kidney failure.

While the physical and mental effects of ADPKD are top of mind for those personally impacted by the disease as well as for nephrologists, the financial implications associated with this condition are often overlooked despite the fact that research has confirmed the economic burden of ADPKD increases over time for both the patient and the healthcare system. Fortunately, timely diagnosis and effective management strategies to help slow the progression may substantially reduce the economic burden for patients and payers, rather than being inundated with costs following a diagnosis after the disease has already progressed.

Analyzing ADPKD’s Impact on the Health System

The financial impact associated with Chronic Kidney Disease, CKD, and by extension, ADPKD is a topic that has been studied in recent years. For example, a retrospective analysis of commercial and Medicare patients published in the American Journal of Managed Care found that mean annualized costs increased exponentially with advancing disease stages. Further, among patients with End Stage Renal Disease (ESRD), it means costs were also increased versus patients without ESRD, at $121,948 and $87,339 for commercial and Medicare groups, respectively. Additional analyses on the topic validated similar results in patients with ADPKD, with data showing increased costs associated with ADPKD compared to patients without this condition.

Specifically, imaging access and insurance coverage is one important financial barrier to overcome for confirming the disease, which would in turn help to decrease the overarching financial implications. Unfortunately, not all imaging modalities are covered by insurance in the early stages of ADPKD. Frequent imaging to assess renal sizes for those with or at risk for ADPKD presents an opportunity to check on kidney health and identify if there is a decline in renal function—even before official diagnosis. In fact, a study found that young women are diagnosed with ADPKD at nearly twice the rate of young men, which may be due to the common use of ultrasound in women during child-bearing years for other healthcare checkups or conditions. This validates a need for increased access to medical imaging of ADPKD, especially for young men, with or at risk of ADPKD, who may not otherwise ever receive an ultrasound. Such early interaction could hold important implications for the financial impact of ADPKD.

The Financial Toll Facing Patients and Payers

When it comes to the direct impact on patients, work productivity has been shown to be adversely affected by ADPKD progression. In a Nordic study of 243 patients with ADPKD, reduced rates of employment were reported, with the average rate of employment at just 44% for transplant recipients and 21% for dialysis patients. Additionally, the study found that only 63% of CKD patients in stages 1-3 and 49% in stages 4-5, respectively, were employed. Between lost wages due to reduced productivity and mean total annual costs accumulated from dialysis, immunosuppressants and other treatments, the costs associated with ADPKD are significant and further progression of the disease is linked to an additional increase in frequency and intensity of medical resource utilization.

Additionally, a four-year study sponsored by Otsuka America Pharmaceutical, Inc. set out to better understand the costs, resources and overall economic burden that stems from ADPKD for payers. The analysis found that not only do healthcare costs and resource utilization increase as the disease progresses, but the majority of the costs are incurred by commercial payers. In this analysis, total mean all-cause costs in patients with ADPKD were $2,251 per member per month across stages. Regression models predicted the stage-specific health care costs for a period of 4 years as $40,164; $33,397; $42,686; $148,402; and $207,548 for stages 1-5, respectively, following multivariate adjustment for age, gender, geographical region, insurance type and comorbidity score. These costs are primarily due to progression into stage 5. However, the study went on to find that early intervention may provide a clinical benefit to patients, which in turn can help reduce the overall financial impact by helping slow down disease progression in ADPKD patients.

Early Intervention and Increased Awareness are Key to Optimizing Care

Fortunately, there are early intervention steps that may be taken by both patients and healthcare providers to help decrease the financial burden stemming from this disease. Since ADPKD is a systemic disease, the increased awareness in the healthcare community will allow for faster diagnosis and earlier implementation of effective management strategies to help slow kidney function decline. Additionally, patients can make important lifestyle modifications such as increasing daily water intake and exercise, implementing a low salt diet and overall early intervention to better manage their condition to try and lessen the economic burden of this disease. While these steps seem minimal, incorporating them into a patient’s routine as soon as diagnosis is confirmed can make a difference in delaying progression and therefore mitigating the financial burden. Patients are encouraged to utilize helpful platforms, like, to better understand their condition and how to live with ADPKD.

Another important step in reducing the financial impact of this disease is ensuring primary care physicians are aware of the early signs and symptoms of ADPKD. Roughly 10% of all ADPKD patients do not have a familial connection to the disease. In the early stages of the disease, there are often little to no symptoms, which explains why it’s so critical to diagnose it early before damage is done. Doing so has the potential to both increase positive health outcomes for patients and potentially delay more costly treatment options. To learn more, providers can take advantage of a number of resources, such as, an online community where nephrology healthcare professionals engage, collaborate, and utilize resources to help improve future outcomes for those with kidney disease.

It is clear that ADPKD poses serious financial implications. Timely and effective management strategies to slow the progressive nature of the disease may significantly reduce the burden on patients and healthcare systems. Furthermore, increased education is critical for effectively managing and ultimately reducing the economic impact this disease presents to the estimated 140,000 Americans currently living with ADPKD.

Mohammed S. Ahmed, MD, DO, FASN, CSH, is a contributor and consultant to Otsuka America Pharmaceutical Inc.

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