Over 36,000 hospitalizations in 10 years and up to €46,000 per patient, but care centers are still lacking
A heavy burden for a rare disease
ANCA-associated vasculitis (AAV) are not only rare and complex conditions, but also a significant clinical and economic burden for the Italian healthcare system. A newly presented national study, unveiled during the World Vasculitis Day, analyzed hospital discharge data over the past decade, revealing a worrying scenario.
There were more than 36,000 hospitalizations, with average costs of €32,285 for GPA patients and €46,023 for MPA cases. These figures reflect both the severity of these autoimmune diseases and the lack of structured treatment pathways.
Late diagnoses and territorial inequality
Diagnosis takes on average 6 months, a dangerous delay for a disease that can affect kidneys, lungs, nerves, and more. According to Prof. Luca Quartuccio, mortality for AAV patients is 2.3 times higher than in the general population. Many patients are forced to travel long distances to reach the few specialized centers available.
This interregional mobility results in an additional cost of €4,000 per patient, highlighting inequality in access to care and a fragmented national response.
The patient’s voice and institutional action
Ruben Collet, president of A.I.V.A. and AAV patient, stated: “Patients wait years for a correct diagnosis, severely affecting their quality of life.”
Senator Orfeo Mazzella, co-chair of the Parliamentary Intergroup on Rare Diseases, reaffirmed his commitment to the cause and the importance of Bill 1206, which proposes a centralized purchase procedure for orphan drugs.
A call for a national care network
The report, curated by CERGAS-SDA Bocconi, urges a multidisciplinary and coordinated approach, involving rheumatologists, nephrologists and other specialists. The goal is to reduce diagnostic delays, cut costs, and most importantly, save lives.
Because no disease should be left behind, no matter how rare.
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