Youth Living With HIV In Ontario Take Back Their Narrative

New event helps youth connect with their peers…

By Muluba Habanyama

Navigating your teenage years is never easy. Add in the nature of smaller towns and living with HIV, and your world can feel upside-down with few places to turn for support.

I was diagnosed with HIV at age 2 in 1995. I struggled after losing both of my parents to HIV-related illnesses, and eventually stopped taking my medications and seeing my medical specialists. I am one of many young people who can relate to the struggle of taking medications, suffering losses, deciding when disclosure is appropriate, and more. To address these issues, the AIDS Committee of Durham Region (ACDR), in collaboration with other Ontario AIDS service organizations and stakeholders, created a space to help the community: the Pozzy and the HYPE Youth Summit.

The Pozzy is a group led by and for youth living with HIV in Ontario. It has been running for six years, and in that time has helped young people connect with peers on life experiences and make friendships with others experiencing similar situations. The success of the Pozzy grew quickly and the youth participants wanted a celebration – a big gathering to continue these conversations and advocacy on a larger scale. That idea eventually became reality with the HYPE Summit, a 3-day event that took place in May 2018 at the Fern Resort in Orillia.

The HYPE Youth Summit was a smash hit, having 30 youth attend and participate in workshops. Delegates had tough conversations on health, disclosure, empowerment and future planning, all facilitated by and for young people living with HIV. On the third day of the summit, service providers joined the discussion and learned from the attendees. Some of the activities included a “cafe scientific,” where researchers presented HIV data and received feedback, as well as a disclosure activity where a service provider role-played a youth and vice versa, and discussed how to disclose to a romantic or sexual partner. There was also a youth panel where service providers could ask questions related to their practice and care. One of the most poignant moments of the conference took place when delegates got to state comfortably what stops them from accessing care or support. There were frank discussions about the relationships between youth living with HIV and service providers.

“Seeing young people across Ontario come together to talk about their shared challenges and experiences in order to effectively organize is so positive to see,” says Matthew Halse, of ViiV Healthcare Canada, which supports the annual Summit. “ACDR is an on-the-ground leader in youth engagement and providing services to folks living with HIV.”

The success of the summit was followed by small location gatherings, a fall friends-giving event, and matching youth who could be clinic buddies (attend appointments together) and medication buddies (take medications together).

I’m now 25 and working as ACDR’s youth transition coordinator, and I plan to work with community partners to continue the work of the Pozzy and HYPE for several years to come. I want to keep building this program and build the skills and empowerment of youth coming after me. On a personal level, I could list three of my best friends that I have met from these connections. I could name 10 individuals who have lent me their help in my time of need. All of my peers deserve that.

The overwhelming success of HYPE has led to an expanded event this year: an extra day and additional spaces for youth and service providers. The HYPE Youth Summit returns June 12-15 in Niagara Falls! There is no cost for attendees.

To get more information or to be involved with the summit, contact transitioncoordinator@aidsdurham.com and/or hypesummit@aidsdurham.com.

MULUBA HABANYAMA is an activist, organizer and storyteller. She has been living with HIV for almost her entire life, and after studying journalism, she became involved in activism. She serves on the boards of the Ontario HIV Treatment Network, ICAD (Interagency Coalition on AIDS and Development) and The Teresa Group. Her work has been published in Huffington Post, Flare, MTV and more. She has been the youth transition coordinator at the AIDS Committee of Durham Region since November 2018. Her most valuable title is that of aunt to Amaja, Judah and Ezekiel.