World AIDS Day – December 1, 2022

UNAIDS has declared ‘equalize’ as this year’s theme for World AIDS Day. It’s a powerful idea, but to make it happen will require resources and a determined challenge to current ways of thinking and doing things about HIV internationally and here in Canada.

Last World AIDS Day (December 1, 2021), Realize released a statement  focusing attention on systemic ableism and ageism in the global HIV response and announcing our commitment over the coming years to studying and beginning to address these problems in Canada.  This year, we wish to dive a bit deeper and share with you the results of some of our work over the past year.

Confronting Ableism – As part of our Canadian HIV and Disability Project in 2022, Realize conducted a National Environmental Scan of HIV and Disability Resources, which included a scan of over 150 HIV service organization websites across Canada, a scan of over 100 disability service organization websites across Canada and 12 key informant interviews with stakeholders in HIV and Disability Service Organizations. The results will be published soon (watch our website), but here are some of the preliminary findings:

• People living with HIV and people with other disabilities both face systemic barriers to health, social services, and community inclusion
• Community Based HIV Organizations and Disability Service Organizations are often dependent on government funding and charitable donations, and therefore may limit the scope of their services to what is funded.
  • compartmentalization of programming
  • limited transfer between programs
• HIV stigma – HIV is sexualized, moralized, and linked to “othering” of behavior.
  • HIV is a sexually transmitted infection so often the focus is on behavior change and education
  • Idea that “other people” get HIV
• HIV services and organizations are operating at maximum capacity and working with less support/ funding while cases and need increases.
  • While many groups feel that tailored services should be provided for disabled communities, organizations are limited in how they can increase reach
• Medical model in disability and HIV creates compartmentalized care and services. People have to go to different providers to get their comprehensive needs met.
• HIV prevention isn’t seen as a priority or necessity by disability organizations since disabled people aren’t seen as sexual beings. Discussion centers around sexual abuse or exploitation, not sexual health, or pleasure.
• HIV organizations need to consider disability as they modify their programs to include aging with HIV as part of the care continuum.
• Centralized knowledge sharing/referral to support is needed. Disability orgs. need to develop sexual health info /programming even if it’s from PHAC or public health sites
• People fall through the cracks, even though they are visiting their practitioners for care and treatment related to their disability. Inherent biases limit conversations around sexuality.

This Environmental Scan is foundational to work Realize will undertake in the coming years to help bridge the divides between the HIV and disability communities and to improve access to HIV information, treatment and supports for people living with disabilities across the country – work we also highlighted as co-organizers and hosts of the Disability Networking Zone at AIDS 2022 in Montreal this past summer.

For more information about the HIV and Disability Project, contact Elizabeth Racz, National Research & Program Officer at Realize, eracz@realizecanada.org.

Confronting Ageism – Older adults living with HIV (65+) often experience systemic ageism (sometimes coupled with systemic ableism) when accessing information, care, supports and services. Some of these barriers were outlined in a community-based research study – The PANACHE Ontario Project: Preferences And Needs for Aging Care among HIV-positive Elderly people in Ontario –conducted by Realize and research partners. Recently, the team behind PANACHE have received funding to conduct this research nationally.

It is shocking how difficult it has been to get issues of aging on the international and national HIV agendas. This year’s International AIDS Conference in Montreal (AIDS 2022) marked the first time a space for discussion of HIV and aging issues (the Silver Zone) was approved – after earlier organizing efforts were denied. Realize hosted the Silver Zone – co-organized with a number of partners around the world.

In 2020, there were an estimated 7.5 million people over the age of 50 living with HIV around the world. Close to 40% of people with HIV who live in high income countries will be at least 60 years old within the decade. And by 2040, over 9 million people living with HIV in sub-Saharan Africa will be over 50. These aren’t just numbers. They are people, organizers, community leaders, caregivers, and much more.

Frustrated by the global community’s slow response to the changing demographics of HIV, groups behind the Silver Zone at AIDS 2022 formed the International Coalition of Older People with HIV (iCOPe HIV). Its founding members include the European AIDS Treatment Group (EATG), the National AIDS Treatment Advocacy Project (NATAP, USA), Realize (Canada) and UTOPIA_BXL (Belgium). Together, the members drafted an international call to action called the Glasgow Manifesto – so-called because it was delivered to the global HIV community at the International Congress on Drug Therapy in HIV infection (HIV Glasgow 2022) on October 26, 2022.

“Our bodies, hearts, minds, and pocketbooks reveal scars earned building the modern HIV response. As we age, many of us are living with multiple chronic health conditions, coping with frailty, disability and/or cognitive changes, becoming more socially isolated, and experiencing ageism in addition to HIV stigma and other forms of discrimination. Our independence, quality of life, and longevity are compromised and yet the HIV response has not evolved with us. It is past time for us to assert our rights to health, dignity, and support!”
(from the preamble of the Glasgow Manifesto)

The Manifesto lays out 10 calls to action across three themes – care, quality of life, and empowerment.  Read the full text of the Glasgow Manifesto, including the 10 Calls to Action.

The coalition’s calls to action have struck a chord with many people involved in the global fight against AIDS. According to Kate Murzin (National Program Manager at Realize), “since the Manifesto was delivered publicly on October 26, 118 HIV organizations around the world have signed-on – a groundswell of support we hope to translate into action and systemic change”.

For more information about the Glasgow Manifesto, please contact Kate Murzin, kmurzin@realizecanada.org.