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Bob Leahy

Bob Leahy

Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com founder Brian Finch.  He joined PositiveLite.com at its inception in 2009 and became it's Editor a year later.

Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year.  He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network  (OHTN) and the Canadian AIDS Society (CAS).  He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005.  Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.

In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.

Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest  in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.

Jun26

Filling the void: Canada’s national voice for people living with HIV takes flight

Friday, 26 June 2015 Written by // Bob Leahy - Editor Categories // Activism, Features and Interviews, Living with HIV, Opinion Pieces, Bob Leahy

Bob Leahy reports on the fledgling organization called CPPN/RCPS recently formed by and for Canadian people living with HIV to give them a strong voice on the national stage

Filling the void: Canada’s national voice for people living with HIV takes flight

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.

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 

Tom Johnston (Rural New Brunswick)

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

Canada needs an organization like this for the autonomy and ability to bring together all people living with in solidarity to speak to our needs, and give us the ability to have our voices heard. This is GIPA/MIPA at its best.

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

I am sure there will be difficulties along the way, however I have confidence we will overcome any and all barriers. I do not foresee many problems in regards to those of us living positive,  judging from the overwhelming interest and feedback we have received at this point. Existing agencies could view us as a threat to their clientele, and we also need to work to gain the confidence of government funding agencies and potential supporters, be they fellow ASO’s or funders. I feel our networking potential will move forward as they become more familiar with our objectives and see we want to work with all. 

Robert Bardston (Medicine Hat, Alberta)

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

Canada is not just a land mass; Canada is its people. To serve its people, those people must have access to each other and  to the same information. Each individual should have a voice in policy making, issue assessment and addressing challenges. Without an independent national network these aims remain unanswered and impossible.

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

The primary difficulty in establishing a national organization is communication, despite the distances separating the parties in discussion. Thanks to technology, this challenge is not insurmountable. Phones, fax and above all the internet bring us closer together than ever before in history. Another challenge is the respecting of differing cultural perspectives in a common response.   The disparate cultural slants across such a massive landmass as Canada require flexibility and recognition of individual needs in every decision. This makes for a difficult and sometimes unwieldy problem-solving process, but one that is essential for equity of representation.

Christian Hui (Toronto, Ontario)

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

Canada needs an independent national for persons living with HIV (and HIV co-infection) because after more than 30 years since the discovery of HIV, the people are no longer at the forefront of the HIV movement. In order to truly honour the Denver Principles and to uphold GIPA/MEPA, we need to be at the front and centre and have a unified and collective voice that is independent of existing ASOs. People living with HIV need, and have the right to, a channel to provide community-driven feedback to policy makers, funders, service organizations and the broader community.

By having an independent national network for people living with HIV, our voices can be heard, not sidelined, and people living with HIV and communities can expect positive change that truly works for and addresses the needs of the HIV community in Canada. CPPN/RCPS can act as a feedback loop from the ground and inform both service organizations and funders on what is working well, and more importantly, what is not working for people living with HIV and the communities they belong to, and strategies informed by the communities on how all stakeholders can help to address HIV effectively and collaboratively.

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

The talk of a national network for persons living with HIV in Canada is not a new conversation, as it has existed in the past and is a recurrent conversation which community members have brought forth over and over again. The chief challenge that CPPN/RCPS is facing right now is how can a grass-roots, under-resourced organization take off the ground?

We feel that in order for the network to succeed, aside from engaging people living with HIV across the nation meaningfully, we must also receive the support of ASOs and/or funders in terms of monetary or in-kind support. What CPPN/RCPS needs are infrastructural supports so we can sustain the momentum that we have already garnered, and to provide a platform so positive individuals across the country can take part in consultations and in helping to create the by-laws for CPPN/RCPS.

The most critical issue CPPN/RCPS is faced with is how we can engage people living with HIV across Canada meaningfully, and how we can do that without having many resources. Organizations are highly encouraged to provide CPPN/RCPS with any assistance that can help the network to become established: seed funds. technological and/or communication software and platforms such as videoconferencing and teleconference services to facilitate country-wide communication among people living with HIV, web-based project management tools that can help us all participate in consultation processes or participate in advisory committees and/or working groups. We also need guidance, feedback, and/or expert knowledge (such as pro-bono legal advice) to facilitate the development of organizational policies and by-laws, etc.

Website and Online Application: http://cppnrcps.weebly.com 

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