Canadian Positive People Network (CPPN)
Réseau canadien des personnes séropositives (RCPS)
The CPPN received its Articles of Incorporation as a not-for-profit national organization in July 2015. However, since the CPPN is a network of, by and for people living with HIV and HIV co-infection exclusively, its total years of experience is calculated based on the collective lived and living experience of its members, as individuals and as representatives or members of community-based service organizations. Thus, the CPPN’s mean number of years of experience in the prevention and control of HIV, hepatitis C, sexually transmitted infections, and sexual health promotion is twenty-one (21) and its collective total (cumulative) years of experience is five hundred and twenty-nine (529).
As noted above, the CPPN’s Articles of Incorporation were confirmed in 2015. However, the Network’s active and meaningful engagement with people living with HIV and HIV co-infection was underway under the CPPN umbrella for two years prior. Thus, the nature and extent of the CPPN’s previous experience is captured by engagement with (and reliance upon) more than 200 people living with HIV and HIV co-infection in its organized and informed programmatic response for nearly seven (7) years.
While data (estimates) are nearly three years old, the CPPN recognizes that new HIV infections continue to occur despite prevention efforts and improved prevention technologies. According to the Public Health Agency of Canada, there were 62,050 people living with HIV in Canada in 2018 and, in the same year, more than 2,000 new HIV infections were identified. We also know that as many as 8,000 individuals are living with HIV but are unaware of their sero-status.
In terms of HIV co-infection (specifically, hepatitis C), based upon estimates published by the World Health Organization, we know that up to 15% of people living with HIV worldwide are also affected by hepatitis C infection. Extrapolating for Canadian context, this estimate suggests that HIV co-infection affects as many as 9,000 Canadians.
While the CPPN does not purport to represent all people living with HIV or HIV co-infection in Canada (i.e., current membership is far-less than 62,000 individuals), its raison-d-être is to work with and seek advice and guidance from as many people living with HIV and HIV co-infection as possible. The CPPN’s mission and mandate and, indeed, its activities are developed and delivered with, by and for people living with HIV and HIV co-infection.
Though difficult to quantify, it concerns most of CPPN’s members that the meaningful engagement of people living with HIV and HIV co-infection is trending toward (or has notable potential for trending toward) tokenism. The CPPN certainly agrees with the conclusion drawn in a paper published by “Project PEER”: “Currently, there are no common standards or frameworks/guidelines on how to operationalize GIPA/MEPA in either an organizational or research team context.”
In formally incorporating, the CPPN answered the call of people living with HIV first articulated in 1993. It was that long ago that people living with HIV identified a need for a national network that would ensure their meaningful engagement despite the absence of common standards, frameworks, or guidelines that define meaningful engagement at local levels. In fact, it was - and remains - the vision of the CPPN’s earliest members that the CPPN is and should be best-situated to define for themselves what meaningful engagement is and ought to be. The CPPN’s members represent unequivocal expertise by virtue of their lived and living experiences that should never be tokenized, but too often feels like it is.
The CPPN's central tenet is to reassert and underscore that understanding and adopting a set of principles which place true value on the meaningful engagement of people living with HIV and HIV co-infection lacks credibility and does not instill confidence for people living with HIV and HIV co-infection if/when these ‘principles’ are not the product of the people for whom they are intended.