Documenting barriers to access HCV care and treatment: a peer-led research João Santa Maria, Magda Ferreira, Renato Pinto, Joana Sanches, Álvaro Ávila, Adriana Curado Lisbon Addictions 2017

Declaration of interests Reach & Link study has been supported by an unrestricted grant from Gilead Sciences Europe Ltd.

Background IN-Mouraria harm reduction centre Peers involved in all phases of research Context: HCV prevalence in People Who Inject Drugs (PWID) estimated over 80% Increased access to DAAs in Portugal, but low treatment uptake among PWID The need to better understand what is preventing PWUD from accessing effective HCV treatment Presentation on behalf of JSM The research project is currently being implemented at IN-Mouraria Harm Reduction Centre in Lisbon. The peers working in the harm reduction centre are responsible for all phases of the research project: study design, data collection (testing and interview), data analysis and presentation of the results. Portuguese context: Everyone accounted for in the National Health System can access treatment. Priority criteria - F3 and F4 patients, patients co-infected with HIV or who present extra hepatic manifestations, people who belong to groups where transmission rates are higher. Agreement: Same price for 3-month or 6-month treatment courses. Payment is per patient treated (cured-SVR) – «pay per performance». Centralized funding programme for National Health System hospitals

Objectives [Reach & Link project] To improve access and adherence to HVC treatment among PWUD in harm reduction settings by: documenting barriers to HCV care and treatment; identifying solutions or measures that need to be taken in order to improve access and adherence to HCV treatment; and advocating for those solutions involving the community of PWUD. Why implement Reach & Link project? We will be presenting the results of the first phase of the project – in which we documented the barriers our clients face in the access of HCV care and treatment

Methods All HCV+ PWUD in contact with the centre were invited to undertake a semi-structured interview, covering socio-demographic information, drug use patterns, health status (including HCV history), and issues related to access and utilization of HCV treatment services. 49 interviews performed between April and July 2017 46 participants selected for analysis 3 participants excluded because of very recente HCV diagnosis, they have no experience in the access of HCV care

Participants (n=46) 85% male, 27-60 years old, average 45y 76% born in Portugal (most migrants are from the PALOP) 46% had 6 years of education or less 46% were homeless 41% were receiving “RSI” (basic income) 20% were working (formal or informal) 22% (n=10) are co-infected with HIV, 90% being in ART 91% have NHS number 72% are registered at a primary healthcare centre

Drug use prevalence Sample of active drug users – 85% reported injeting and/or smoking drug use in the last year

Illicit drugs used (last year)

Local of HCV diagnosis Not surprisingly most of participants have been diagnosed in NHS (hospitals, primary care), prisons and drug treatment services.

Time since HCV diagnosis vs treatment status Mean time since HCV diagnosis is 14 years 67% - 10+ years 37% - 20+ years 24%

Access to HCV care and treatment 5 participants are in treatment; 2 dropped out

Barriers to access HCV care Lack of adequate and timely referral “No family doctor ever referred me to treatment.” Lack of information about HCV infection and its treatment “The doctor told me that the virus was dormant and because it had antibodies, I did not have to go to the hospital. I did not have any information about the disease so I did not ask for anything else.” Devaluation of disease and treatment by healthcare providers and services “There was no information and what the doctors told me was wrong, because I was told that I could live the rest of my life with Hep C.”

Barriers to access HCV care Living conditions: poverty, unstable housing, lack of transportation “The fact is being on the street and not having the money to go, on the street we are ‘desacreditados’ and we don’t have any desire to go, the system is very slow and we lose the will to continue.” Active drug use and the absence of symptoms “The drug comes first, because I do not feel sick, I have no symptoms, I do not feel like I have it, I don’t think its important that I have Hep C.” Stigma and discrimination “A barrier to this, and to everything, is to be a drug user and an ex-convict, there is discrimination, people treat me differently.”

Barriers to access HCV treatment Not being offered treatment or postponing treatment “I was told I have to wait because my condition is not very serious.” Poor relationship with HCV doctor, communication issues “The information I was given was insufficient to make a conscious choice. I often changed doctors and this was not very good for establishing a trusting relationship with the doctor.” Living conditions “At the time I stopped going to the hospital because I was living on the street, I felt bad for going there all dirty and smelling bad. I never got a treatment and stopped going, life was too complicated.”

Linkage to care

Conclusions Barriers to HCV care and treatment arrive at different levels At the provider level, we should increase HCV knowledge among health professionals working in primary care, drug treatment services and prisons, improve referral channels, improve communication between HCV doctors and clients, address stigma related to drug use, recognise the professional role of peers as case managers and health navigators, consider decentralizing HCV care and treatment At the patient level, we need to address the social factors preventing PWUD of accessing HCV care and treatment, increase HCV knowledge, improve participation and involvement

Thank you