The AIDS epidemic remains one of the most challenging global public health crises. Since the 1980s, an estimated 37 million people worldwide have died from AIDS-related illness, while roughly the same number of people are currently living with HIV.
Medical breakthroughs over the past four decades such as combination antiretroviral therapies (cART), mean many diagnosed with HIV today can expect to live long and healthy lives. In Canada, the prevalence of HIV in older Canadians has increased, and in British Columbia, close to two thirds of the 11,000 people living with HIV are over 50.
As this demographic ages, it enters uncharted territory. They are the first generation to have lived for decades with HIV and many survived the devastation of the AIDS crisis in the 1980s and 1990s. Their experiences are crucial to understanding healthy aging among people living with HIV.
HIV incidence among women has also steadily increased over the past several decades and women now make up more than half of all people living with HIV worldwide. In Canada, women living with HIV have poorer health outcomes compared to men living with HIV, including lower rates of access to care and uptake of cART. These outcomes are driven, in part, by women surviving against poverty, marginalization, gender-based violence, gender inequity, and other forms of social marginalization.
Dr. Angela Kaida is an epidemiologist in SFU’s Faculty of Health Sciences, where she holds a Canada Research Chair in Global Perspectives in HIV and Sexual and Reproductive Health. She has been learning from and working with women living with HIV for the past 10 years and adding to the contemporary understanding of how having HIV affects women’s health.
Kaida is one of three principal investigators from across the country leading the Canadian HIV Women’s Sexual and Reproductive Health cohort study (CHIWOS), a community-collaborative research project created by, with, and for women living with HIV. The project is a collaboration between SFU, UBC, McGill University, the BC Centre for Excellence in HIV/AIDS, and numerous clinic and community partners. A longitudinal study, CHIWOS enrolled 1,422 participants and is yielding critical information to enable improvements in the health, care, and well-being of women living with HIV in Canada.
From the community-based CHIWOS study and a biomedical study CARMA (the BC Children and Women: AntiRetroviral therapy and Markers of Aging), Kaida has joined forces with a team to launch BCC3: The British Columbia CARMA-CHIWOS Collaboration (BCC3). This B.C. study will focus on 350 women living with HIV and compare them to 350 women living without HIV to understand from cell-to-society all of the factors that contribute to women’s healthy aging.
Study background, guiding principles and protocols have recently been published: British Columbia CARMA-CHIWOS Collaboration (BCC3): protocol for a community-collaborative cohort study examining healthy ageing with and for women living with HIV.
The BCC3 research models an equitable and support-centered approach to bring together women living with HIV, researchers, clinicians, and community partners. As such it will be the first interdisciplinary study of its kind to gather and integrate cellular, clinical and social factors into its research.
“We know women living with HIV experience accelerated aging, but we don’t know if it is because of HIV itself, the antiretroviral treatment, or other factors in their lives,” says Kaida. “For example, women living with HIV tend to acquire cardiovascular disease, diabetes and menopause years earlier than their HIV-negative counterparts. Is this because of HIV, treatments, the social and structural determinants of health, or an interaction between all of these factors? These are the questions we are exploring in BCC3.”
Kaida adds that women living with HIV themselves encouraged researchers to undertake this study as they began experiencing symptoms of aging and had so many unanswered clinical questions. Operating within a community-based research approach, involving people living with HIV and valuing their experiences and input, has been central to Kaida’s work.
Through CHIWOS, Kaida led efforts to hire, train, and support Peer Research Associates (PRAs) – women living with HIV who have contributed their first-hand experiences and expertise to the project at every step. PRAs are involved in study design, data collection and knowledge translation and have completed training in research ethics, research methods, survey administration, and self-care.
“As researchers we are relied upon for the scientific explanations,” says Kaida, “however, it’s also essential to listen to and learn from women who are living with HIV. They have a highly valuable expertise.”
The BCC3 study is designed to look at all areas of a woman’s life. At the cellular level, it will examine key scientific markers of aging including immune cell distribution, mitochondrial DNA mutations and leucocyte telomere length. From the previous biomedical study, CARMA, researchers know that people living with HIV have shorter telomeres than people without HIV, which may partially explain accelerated aging.
“Once we look at a person’s chronological age versus their biological age there are practical implications,” says Kaida. “Diseases or conditions one might worry about in their sixties, might be important to watch out for in their fifties, and health care practitioners need to be aware.”
The study will look at societal and environmental factors, for example, whether participants have experienced poverty, trauma, and discrimination or if they are a survivor of gender-based violence. “Any work we can do to provide the empirical evidence linking social inequalities and the adverse health effects of inequalities is health-promoting work,” says Kaida.
“This is a trailblazing cohort study. We have a growing group of women who have lived with HIV for decades and are now entering older age. To understand what is happening within this particular demographic, and considering their very unique status as long-term survivors, we hope they can help us guide better health policy and practice to improve health and longevity of women living with HIV – and all women – in B.C. and beyond.”
The BCC3 Study is currently recruiting women to help them learn more about the health and aging of women living with HIV, and the clinical, cellular, and social factors that are involved. To participate please visit: https://hivhearme.ca/studies/participate/
The BBC3 study is supported by funding from the Canadian Institutes of Health Sciences.