World AIDS Day (December 1, 2023) is when citizens around the world unite to show support for people living with HIV and to remember those who have died from AIDS-related illnesses over the last four decades. The theme this year, as declared by UNAIDS, is ‘Let Communities Lead’. This is a principle that underlies all our work at Realize –on HIV and aging, and optimal health and well-being for people living with HIV.
This year, in the lead up to December 1st, we have joined with our partners at CANFAR, CATIE, Gilead Sciences (and many others) to say IT ENDS WITH US. Listening to community voices, working together across the HIV community on shared goals, and letting the community lead the HIV response across Canada and beyond, is the only way WE can stop the devastating impact of HIV.
“HIV is not a death sentence anymore but the stigma and misinformation that still exists has not evolved as fast as medical advancements. Saving lives must also include the dismantling of stigma around HIV/AIDS!”Miles Sexton (They/Them)
|Of new HIV cases in Canada are among Indigenous people
|Of all new HIV cases are among people who inject drugs
|Of all new HIV cases are among females
|Of all new HIV cases are through heterosexual sex
|Of all new HIV cases are among men who have sex with men
|Of new HIV cases were among people 50+
You can find out more about IT ENDS WITH US, and its five main themes (the Cycle of Stigma, Indigenous-Led Response, Harm Reduction Works, Access to Cultural Care, and Barriers to Testing), and actions you can take, on the CANFAR website.
Each of these five campaign themes resonate across the HIV community in Canada and intersect our work at Realize, but we believe that to truly address the impact of HIV in Canada (and beyond) we must answer important questions about quality of life for people living with HIV and the aging demographic of the HIV community.
The aging demographic of HIV in Canada is difficult to map. The Public Health Agency of Canada and other health authorities don’t do a lot of statistical modelling on people living with HIV. We do, however, have telling evidence that concerns of older adults living with HIV must be at the centre of any effective HIV response. In 2022, 65% of people living with HIV in British Columbia were age 50+ (https://stophivaids.ca/qmr/2022-Q4/#/bc). In 2020 in Ontario, an estimated 11.5% of people living with diagnosed HIV were age 65+, and an additional 26.5% were age 55-64 (https://www.ohesi.ca/wp-content/uploads/2022/10/HIV-Care-Cascade-2020-final-1.pdf). In a study (published 2022) that collected data from the medical charts of 1999 of the most recently seen HIV-positive adult patients seen in 10 clinics across Canada between 2016 and 2018, 57% were aged 50+ (Source: Brunetta, Jason M. MDa; Baril, Jean-Guy MDb; de Wet, Joseph J. MBChBc; Fraser, Chris MDd; Rubin, Gary MDe; Thomas, Réjean MDf; Loemba, Hugues MD, PhDg; Logue, Ken MDh; Silverman, Michael MDi; Palmart, Jean BAScj; Jiang, Haiyan PhDk; Lorgeoux, René-Pierre PhD, MBAl; Tossonian, Harout MD, PhDl; Kim, Connie J. PhDm,*; Wong, Alexander MDn. Cross-sectional comparison of age- and gender-related comorbidities in people living with HIV in Canada. Medicine 101(28):p e29850, July 15, 2022. | DOI: 10.1097/MD.0000000000029850) (This latter study is not epidemiological monitoring).
The intersection of HIV and aging is complex and synergistic, and involves such factors as the natural aging process, HIV infection itself, the treatment and management of HIV with medications, co-infections and co-morbidities, modifiable risk factors, and the social determinants of health.
The increasing number of people aging with HIV, and the complexity of aging with HIV, presents new challenges for care, treatment, and support. Realize is working as a catalyst, bringing together the HIV sector and the aging sector to respond to these challenges. We host the Secretariat of the National Coordinating Committee on HIV and Aging (NCC) – a community led advisory group addressing issues affecting older adults living with or vulnerable to HIV in Canada through information exchange, collaborative initiatives, and awareness-raising.
People living with HIV continue to face significant challenges: a higher risk of age-related conditions such as heart disease and osteoporosis; reduced quality of life resulting from years of treatment, and other health conditions that often accompany HIV; persistent stigma and discrimination that can impact mental health and (when stigma or discrimination come from a healthcare professional) act as a barrier to accessing needed care; and precarious access to income and social supports.
Over the past year, the National Community Advisory Group on optimal health and wellbeing in the HIV community (hosted by Realize) has been conducting community consultations to create a Canadian companion document to the Global consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV. This work is close to being complete and the Canadian Companion document will be published in the coming months (watch for it on the Realize website).
The consultations found a number of the recommendations in the Global consensus statement resonated strongly with members of the HIV community in Canada:
- The need for integrated clinical care that addresses both HIV and other comorbidities – specifically, Canadian participants talked about the need for better doctor-to-doctor communication that didn’t rely on the individual receiving care to be the go-between and/or to repeat their experiences/symptoms/concerns over and over
- The need to develop models of care focused on healthy aging and taking quality of life, as defined by the individual, into account – Canadian participants talked about the importance of a proactive, whole person approach to care (needing more than a list of tasks or medicines to take, the need for mental health and psychosocial support, the desire to be asked what is important to them and to have it acted upon, coverage for things like dental care, eye care, housing, food etc.,)
- Reducing stigma from healthcare providers – Canadian participants talked about avoiding healthcare interactions or reservations about sharing personal information with health care providers because of past experiences of stigma and discrimination when seeking care. As one participant in the consultations described their experience of stigma in health care described it, “once you have a difficult experience you expect it again in the future”.
The experiences and voices of people living with HIV across Canada are at the centre of our work at Realize. Only through community cooperation and leadership will we end disparities in quality of life for people living and aging with HIV? When it comes to the HIV response here in Canada and around the world, it’s time to listen and let communities lead.