In February 2022, Positive Life NSW (Positive Life) consulted with people living with HIV, about the impacts of two years of the COVID-19 (COVID) pandemic on people living with HIV navigating our own health needs and the health system.

Attendees living with HIV travelled from the Sydney inner and outer Metropolitan areas, with 50% of attendees from a culturally and linguistically diverse (CALD) background, over a third of attendees were heterosexual men and women living with HIV, and half of the total group were men who have sex with men living with HIV.

Emerging issues from this face to face consultation included:

• significant impacts of isolation on people living with HIV;
• increased financial uncertainty for all people living with HIV;
• an increased burden of distress, anxiety, and depression for all people living with HIV;
• obstacles for people living with HIV to receive timely and appropriate health care especially accessing HIV s100 provider appointments, navigating telehealth and accessing allied healthcare such as hydrotherapy, exercise regimens and comorbid health appointments and support;
• for people living with HIV from CALD backgrounds, language barriers confounded the experience of isolation, and compounded the uncertainty of COVID-19 health messaging;
• broader challenges to maintaining quality of life. 

Participants living with HIV were agreed around the importance of security in mitigating the impacts of the COVID pandemic on our lives. Security strategies were broken down around an axis of secure housing, finances and health, with issues of dental health, healthy relationships, a reformed migration system, and end of life or pro-choice assisted dying being identified as associated with agency, reassurance and safety.

This CCEF highlighted that despite the impacts of the COVID pandemic on the lives of people living with HIV in NSW, there remains a resilience within the community and a strong desire to seek out options to move towards improving their quality of life.