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Ivan Gardini1, R. Fontana1, M. Fumagalli1, M. Conforti1.

1-EpaC Onlus, Italian Liver Patient Association

Objectives: Despite Italy has a large HCV infected pool (1.500.000 estimated) novel Direct Antiviral Agents (DAAs) against HCV genotype 1 have not yet been approved. As the estimated budget to cover all eligible patients could be ten-fold higher,  limitations or patient selections could be applied. The study purpose is to obtain the patients’point of view about associated costs, sustainability, possible scenarios related to the lack of economic resources.

Methods: EpaC is the most important Italian NGO for HCV patients. An anonymous web-based questionnaire was published on the association website www.epac.it. It was composed of multiple choice questions and was preceded by a scenario reporting a mean drug cost per patient per course of 25.000-35.000 €, the availability of interferon-free monotherapy DAAs drugs in the nearest future, different reimbursement possibilities (payment-by-results, expenditure thresholds…).

Results: 763 patients participated the survey and 727 questionnaires were considered validly compiled. The profile of the participants was assessed concerning sex, age, geographical provenience, health condition, fibrosis stage, eligibility for triple treatment. 83% of patients claimed equity of access independently of disease severity, 55% is not inclined to postpone the treatment despite 62% of these has low/medium fibrosis, 77% of participants does not tolerate the lack of resources that could lead to patient selection, 40% is disposed to travel anywhere to get the most appropriate therapy.

Conclusions: This was a unique and the largest survey on Italian patients about this topics and its results express patients’ determination in looking for specialized structures having funds for cures, which could lead to important internal and external migration flows. Patients expect from EpaC to raise awareness in the policy-makers on the need for approval of the new DAAs and to bring on a campaign of novel therapies equity of access with all Institution independently from the severity of disease stage.

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