A patient’s narrative of engaging HIV care: Lessons learned to harness resources and improve access to care

Abstract

In Canada and the USA, about 30% of people with HIV are uninsured or not covered by government-subsidized health insurance. This paper presents a patient’s narrative of his experience being diagnosed with HIV and accessing care in the midst of his process of immigrating to and studying in Canada. The narrative explores how Vincent Croft (pseudonym) has coped with the chronicity of the infection and its associated social stigma, and the temporary solutions he found to access treatment. Engaging with healthcare providers, researchers, and other people living with HIV has allowed Croft to share his experience, including the barriers he encountered and the solutions he envisioned or attempted, resulting in self-empowerment and reinterpretations of Croft’s own trajectory. Patrick Keeler, a community-based intervener, reflects on Croft’s narrative as symptomatic of systemic issues in access to care of people living with HIV in Canada. He also illustrates how the experiential knowledge of people with similar lived experiences can trigger simple, innovative, and cost-efficient initiatives with Le Cercle Orange, which connects and mobilizes existing resources for people with HIV with no or limited access to care and treatment. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

Keywords

• hiv
• patient experience
• patient engagement
• access to therapy
• community integration