Every Wednesday night at the Dr. Peter Centre 38 men gather to meditate, laugh, listen to music, share a meal and talk about their lives.
The men are long-term HIV survivors.
“A lot of us thought there wasn’t a hope in hell that we would survive,” said Frederick Williams, 55, who tested positive for HIV in 1986. “I had waves of friends that died and died quickly.”
Williams said many survivors missed out on romantic relationships, on friendships, and work opportunities, and experienced isolation and stigma.
“We were told don’t bother to go to university or plan a career, you won’t be here,” said Williams.
For the past year Williams, who is on disability, has been participating in the Dr. Peter Centre Evening Program, a clinical pilot project designed to serve the special needs of men over 50 living with HIV.
Since the introduction of antiretroviral medication, HIV has become a manageable chronic disease, but it is still a very complex medical condition, with significant social stigma attached, said Scott Elliot, executive director of the Dr. Peter Centre.
Isolation, PTSD, loneliness, internalized shame and a lack of acceptance in their own communities are just some of the social challenges many still face.
“Thirty years ago no one thought they were going to live,” said Scott. “There was a lot of trauma.”
The Dr. Peter Centre was founded by Dr. Peter Jepson-Young in 1992 to provide comfort and medical care to AIDS patients.
With the advent of antiretroviral therapy, and as the demographic most affected by HIV shifted from gay men to the intravenous drug-using community, the Dr. Peter Centre pivoted its programs to service that community.
“Among the HIV community we now serve 80 per cent have mental illness, 80 per cent have substance abuse and 100 per cent have chaotic life circumstances,” said Scott.
The cohort of “aging gay men with HIV” no longer fit the model of services the centre provided, said Scott.
As data emerged showing long-term HIV survivors experience unique health challenges, the Dr. Peter Centre became concerned this demographic was again experiencing neglect.
“They are aging faster, getting co-morbidities such as neurological difficulties, bone density issues, depression, challenges with the pill burden — all things we expect with age, but showing up earlier among this population,” said Scott. “We saw a need and wanted to help reach out.”
Since its inception in 2017, the program has been a huge success, said Scott.
The 38 participants have a say in the program and even developed a self-reported quality of life survey index that included questions the participants felt were most important: physical and mental health, as well as social connection and support.
“They’ve made new friends,” said Scott. The dinners are a highlight, with frank conversations that flow from lighthearted joking, to politics and trends, to managing the pill burden, to deeper issues around stigma and shame.
“This is a place where we can talk about anything. We don’t have to explain ourselves,” said Williams who the program has prompted a “calming” and a “recovering of self.”
“To be alive after all these years is amazing, but it’s hard to relate to society knowing we experienced this epidemic, we lived it, we survived it. It’s a great place to vent, and we have a lot of fun.”
The fun includes music, art, trivia games and a big social dinner prepared by the Dr. Peter Centre chefs.
“We even take the leftovers home, and hopefully we’ve made a friend or two,” said Williams.
The Dr. Peter Centre is now looking at developing a similar program for women aging with HIV.