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Filling the Void: Canada's National Voice for People Living With HIV Takes Flight

July 2, 2015

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Canadian Positive People Network

It was all the buzz in Ottawa last week, where membership applications were being snapped up in dozens. Canadians living with HIV may have finally found their voice with the formation of a new organization that aims to influence and revive the country's national response to HIV as well as the lives of those long under represented who live with HIV.

Called the CCPN/RCPS, the initials stand for Canadian Positive People Network, or in French, Reseau Canadien des Personnes Séropositives. You can find their brand new website here.

CPPN/RCPS is an independent network for and by people living with HIV and HIV co-infections in Canada. Its mission is to represent the needs of all persons and communities affected by HIV and HIV co-infections.

The group intends to be at the forefront of the HIV response in Canada. Their aim is tp ensure the movement is coordinated nationally, provincially, regionally and locally to benefit affected people and communities, and also that it is connected with the global HIV response.

The organization wants to work with AIDS service organizations (ASO's), service providers, partner organizations, policy makers, and funders so that all persons and communities affected by HIV and HIV co-infections are engaged, empowered and have access to holistic supports and improved social determinants of health.

I asked Christian Hui, a founding member who has written for PositiveLite.com in the past, whether it's realistic to physically bring together people living with HIV from across Canada, coast to coast, It's a large country, after all.

Says Christian "Of course it would be great to be able to physically bring people together annually as it can be a truly empowering experience. Physical meetings can be very costly, but we should not let cost alone become the reason why an independent, national network for people living with HIV cannot exist in Canada. If we can think outside the box and find alternate ways to communicate and strengthen the community of persons living with HIV (for instance. utilizing web-based technology and social media), we can engage people meaningfully even if we cannot bring as many people physically together from across Canada."

PositiveLite.com talked to six people living with HIV from across the country about the organization's prospects and asked each the same two questions -- on the need for an organization like this and what are the challenges ahead.


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Emerald "Ezzie" Gibson, Fredericton Junction, New Brunswick

Tell people in your own words why Canada needs an organization like this.

There has been a long hard struggle since this was first discuss in 1993 at the Canadian AIDS Society (CAS) meeting in Montreal. Now, 22 years later it is time. We need our own voice to clearly state the views of people living with HIV on a national level We need an organization that is our own to do our work and for our benefit. We need to break free from government funded organizations.

How hard is to form a national organization for people living with HIV -- what are the chief challenges?

The chief challenge will be two: raising funds for the operations of the organization, and forming partnerships with other like-minded national HIV organization such as CTAC, CATIE, CAAN, CWGHR, CHLN, ICAD, CAS and collaborating with other networks such as CHRN and CANAC; regional networks such as the Aboriginal PHA Leadership Standing Committee, CAAT, COCQ-SIDA, OAN, PAN, Alberta Positive Voices Conference Planning Committee; and international networks such as GNP+NA, GNP+, ICW, INPUD, IUSW, MSMGF, ITPC, and UNAIDS, etc. (Wow, Emerald, that's a lot of initials!)


Doris Peltier, Longueil, Quebec

Tell people in your own words why Canada needs an organization like this.

As people living with HIV, we know what we need; we know the issues and we need a strong unified voice, this is why the creation of this network is so vitally needed at this time, it is all about self-determination for people living with HIV!

How hard is to form a national organization for people living with HIV -- what are the chief challenges?

Jurisdictional divides related to pots of money only serve to keep us separated and in our silos; jurisdictional barriers are particularly challenging for Aboriginal people living with HIV and AIDS and for the harder to reach key populations. But bringing people together has to happen and we will find a way.


Walter Ewing (Orillia, Ontario)

Tell people in your own words why Canada needs an organization like this

This is both an exciting and a challenging time to be involved in the HIV response. Over 30 years into the epidemic in Canada, there is a pent-up interest and energy in Canada for a national organization of people living with HIV In the history of the epidemic, there is a plethora of writing about the role of scientists and clinicians providing key answers to the questions about aetiology and treatment of HIV, but little focus on the people who suffered so greatly early in the epidemic, when the diagnosis of HIV infection meant a death sentence, with few years of life left.

HIV has become an infection which is noted for premature aging, a chronic condition that requires maintenance doses of medication, and continued, but infrequent testing for viral load and CD4 count. This has led to less interest in helping people living with because of the less dramatic outcome for us.

Now is the time when there should be even more GIPA and MIPA than there has been in the past. The unique voices of diverse communities and populations of people with HIV are to be represented across the HIV partnership in a national organization.

We must respond strategically to the changing needs of our positive populations. We need to engage purposefully with the national HIV response in order to help achieve the best-possible outcomes for those living with HIV across our country. We need to advocate for our effective participation in all areas through adequate resourcing of the peer-based response to HIV. A national organization will have political influence, and will be a voice for the whole community of those living with HIV.

How hard is to form a national organization for people living with HIV -- what are the chief challenges?

It is difficult to predict where the challenges will come from. Although it may be easier to have access to people who already belong to an ASO, they may also have an attitude that there is no need for yet another organization to advocate for them:

  • Marginalized people will be the hardest to access.
  • Rural people may be hard to reach, and they may not have the resources available to access information and act on it when indicated.
  • Prisoners have special reasons they are hard to reach.
  • Some immigrants, refugees and non-status people will have a number of sticking points
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This article was provided by PositiveLite.com.
 

 

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