After a Rare Disease Diagnosis, Patient Utilization Rises

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Healthcare resource utilization increased for Medicare FFS patients following diagnosis of an ill-defined rare disease.

Avalere analyzed healthcare resource utilization (HCRU) among rare disease patients who were diagnosed between 2016 and 2021 to assess the change in utilization and expenditures in the year following diagnosis. The results show that utilization increased, particularly in lab tests, physician office visits, hospital outpatient (HOPD) visits, and prescriptions.  

Rare disease patients analyzed by Avalere had a high burden of lab tests both before and after diagnosis. However, lab visits and cost per visit both increased after diagnosis. This finding is consistent with a rare disease that is ill-defined and may require many lab tests to diagnose. Stakeholders aiming to increase access and decrease burdens to receiving necessary care should consider the effects on patients with rare diseases when lab tests are required to access care. 

In Avalere’s analysis, Medicare fee-for-service (FFS) patients had an average increase of more than four HOPD visits and three physician office visits in the year following diagnosis. On average, Avalere found that certain rare disease patients had just under one HOPD visit per month before diagnosis, and more than one visit per month after diagnosis. Office visits increased from less than two per month on average to approximately two per month on average in the year after diagnosis. Cost per visit in both the physician office setting and the HOPD setting increased for rare disease Medicare FFS patients after diagnosis. 

Prescription drug utilization was high for the rare disease patients analyzed, both before and after diagnosis. The Medicare FFS patients identified were utilizing more than five prescriptions per month before diagnosis. After diagnosis, these patients were utilizing approximately six prescriptions per month. However, cost per prescription for Medicare FFS patients did not meaningfully increase following diagnosis.  

Avalere’s findings demonstrate that HCRU among rare disease Medicare FFS patients may increase after diagnosis. Resource utilization should be considered as stakeholders aim to increase access to care for patients with rare diseases. 


Avalere performed this analysis using 100% Medicare FFS claims, accessed by Avalere via a research collaboration with Inovalon, Inc., and governed by a research-focused Center for Medicare and Medicaid Services data use agreement. This includes the 100% sample of Medicare Part A and Part B Medicare FFS claims data. 

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