Chapter 1: Population-Specific HIV/AIDS Status Report: People living with HIV/AIDS - Introduction

Chapter 1 - Introduction

1.1 Background

Anyone can be affected by HIV or AIDS, regardless of age, lifestyle or socio-economic status. However, certain populations are more affected than others. In Canada, these populations include gay men and other men who have sex with men, people who use injection drugs, people from countries where HIV is endemic, Aboriginal Peoples, people in prisons, youth at risk and women. Most people living with HIV/AIDS (PHA) in Canada are part of one or more of these populations. Although HIV is a preventable disease, new infections continue to occur. Canada had an estimated 71,300 PHA at the end of 2011, and an estimated national HIV prevalence of 0.2%. Canada is therefore considered a low prevalence country. (1)

This report is one in a series of eight status reports that synthesizes population-specific evidence on populations most affected by HIV in Canada, in order to inform the further development of policies, programs and research. The other reports in the series take a detailed look at population-specific vulnerabilities and resiliencies for HIV infection for the populations most at risk. This report focuses on PHA, and attempts to capture the diverse realities of this population in Canada through a determinants of health lens, which looks at the impact of factors such as income, employment, social environments, culture, gender, access to health services and personal health practices on PHA's quality of life and health status.

This status report includes chapters on surveillance and epidemiological information about PHA in Canada, the lived experience of PHA, the determinants of health that affect the quality of life of PHA, an overview of selected research, and an overview of programmatic responses that were funded at the time of publication.

The following key themes emerged in the production of this report: the diversity of PHA in Canada; the ongoing challenges of stigma and discrimination; the experience by some PHA of HIV as an episodic disability; HIV across the course of an individual's life, from considerations for preventing vertical transmission from mother to child during pregnancy, to specific HIV-related co-morbidities and issues associated with aging; the linguistic and cultural barriers faced by some in accessing health care and support services; treatment adherence; and the important role of community engagement and support.

1.2 Methodology

The report's key themes were identified in consultations with PHA at the Canadian AIDS Society's Annual General Meeting and PHA Forum and the Canadian Aboriginal AIDS Network's Aboriginal PHA Caucus in 2007. Following these meetings, the Public Health Agency of Canada established an expert advisory working group to help guide the development and dissemination of this status report. The working group was composed of PHA, community representatives, non-governmental organizations, researchers, epidemiologists, and policy and program experts. The working group acted as an advisory body, providing guidance and feedback on the report's progress, themes, and evolving drafts. Additional experts were consulted on an ad hoc basis to ensure the report's accuracy and comprehensiveness.

Throughout the development of this report, the Agency has endeavoured to follow the principle of Greater Involvement of People Living with HIV/AIDS (GIPA), which empowers PHA to take a leadership role in the work that most affects them, thereby acknowledging the crucial contribution they make in advancing the Canadian response to HIV/AIDS. The involvement of PHA has been integral to the development of this report - they have identified priorities and themes, commented on evolving drafts, and brought their lived experience and expertise to the process.

The report was developed between June 2007 and December 2011. The Agency developed an internal methodology that each of the population-specific status reports has followed to ensure a consistent approach. The methodology for each chapter was designed to ensure that the most current and relevant evidence was synthesized and presented.

The scope of the literature review includes predominantly Canadian publications; international research was excluded. Epidemiology and surveillance information addressing the national picture were gathered from published reports by the Agency and other sources. The literature identified for inclusion in the report met the following criteria: focused on HIV or AIDS; focused on PHA in Canada; addressed one or more of the 12 health determinants related to HIV or AIDS, or characterized HIV or AIDS in the context of prevention, care, treatment, support, or diagnosis for PHA. Information on living with HIV/AIDS and key determinants of health were taken from research papers and grey literature Footnote 3 published from January 1, 2005, to March 1, 2011, using the search terms and databases cited in Appendix A.

A summary of selected research funded between 2008 and 2010 was developed by compiling information from national funding sources and selected provincial funding organizations. (See Appendix B for the complete list of research projects identified). Both quantitative and qualitative information was gathered and analyzed.

Members of the Federal/Provincial/Territorial Advisory Committee on AIDS, and national and regional program consultants from both the Agency and Health Canada's First Nations and Inuit Health Branch provided input about strategies, networks, committees, organizations, and time-limited projects involved in the response to HIV/AIDS in their jurisdictions. A detailed analysis of the Agency, Health Canada and provincial funding programs was also conducted to obtain information about projects that address PHA across Canada. (See Appendix C for a complete list of networks, coalitions, advisory bodies, organizations and projects identified.)

1.3 References

(1) Public Health Agency of Canada. Summary: Estimates of HIV prevalence and incidence in Canada, 2011. Ottawa: Centre for Communicable Diseases and Infection Control, Public Health Agency of Canada; 2012.