The involvement of positive people remains a touchstone of the global community’s commitment to responding to AIDS. But how far have we come and how far do we still have to go before the voices of people living with HIV are heard and respected? JOHN ROCK reports from Japan.
Signed by the governments of 42 countries following the 1994 Paris AIDS summit, the GIPA Principles refer to the declaration, and therefore commitment, requiring the full involvement of HIV+ people at all levels of response in the HIV and AIDS epidemic. The full and equal involvement of HIV-positive people was envisaged in policy and strategy development and in issues like care and support, access to treatment, reduction of stigma and discrimination and education.
Although in some cases it was a hard won battle in Australia, especially in the early days, it is now generally accepted that the involvement of the positive community in all aspects of Australia’s response is one of the reasons that it has been as successful as it has in dealing with HIV/AIDS. Our GIPA credentials may not be perfect but they are just about as good as exists anywhere in the world.
Other countries in our region which signed the GIPA declaration were Cambodia, China, Indonesia, India, Japan, The Philippines, Thailand and Vietnam. It is fair to say that all positive people in every country of the region aspire to these principles being implemented.
So what did the 7th International Congress on HIV and AIDS in Asia Pacific (ICAAP) held in Kobe, Japan, from July 2-5, tell us about what progress has been made?
Given the criticism of the apparent sidelining of positive people at last July’s International AIDS Conference in Bangkok, this was a question at the front of many people’s minds in Kobe. After all, the scene had been set in Bangkok when the only HIV-positive speaker in the opening ceremony, Paisan Suwannawong, had been placed last in the program, by which point the official party, all the dignitaries and officials had left the auditorium.
How might one measure the level of embracement of the GIPA principles at an AIDS conference? By the number of scholarships given to positive people? Or the number of speakers and panellists in the sessions? Perhaps the subjects that were chosen for the sessions? Or the content of sessions and the extent to which they embraced GIPA? All of them might be useful measures.
In the case of scholarships for people living with HIV/AIDS, the figures for Kobe were similar to those for the previous ICAAP, held in Melbourne in 2001. This was a pleasant surprise given that the organisers had to operate on a very tight budget after the Japanese Government failed to provide substantial financial support. In fact, despite concerns that few positive people would manage to get to the event, the turn up was quite good.
In part this was because the Asia Pacific Network of Positive People (APN+), the regional body representing positive organisations, had worked hard to get as many positive speakers as possible into the official program, to get funding directly for them to attend. The United Nations Development Program also funded several people as part of their GIPA Program.
The participation of positive people as speakers and panellists was so good that at times some people like Frika from Indonesia and Greg Gray, the coordinator of APN+, were running from session to session and finding it hard to keep up. Hiroshi Hasegawa, the president of JaPN+, was co-master of ceremonies at the opening session, and spent half the conference doing media interviews. So, a big tick for visibility.
With respect to the choice of sessions, the organisers made sure that there was plenty of coverage of positive issues, and indeed the theme was ‘Bridging Science and Community’.
The mostly overtly GIPA-focused session was called ‘Beyond Tokenism: The Challenge of making Involvement Meaningful for People Living with HIV and AIDS’. Perhaps much can be understood from the fact that although the session was held in the huge main plenary hall, there were barely 50 people there. The underlying message was that GIPA has not moved past tokenism in most cases. As one positive speaker said: “How often do you feel that organisation after organisation puts your name on its glossy report and gets away with calling it ‘involvement’? Do you feel co-opted?”
Elden Chamberlain, the manager of the Asia-Pacific HIV/AIDS Program of the Australian Red Cross, made a telling comment. “We invite people with HIV along, they can sit at the table, but they don’t have the power to make sure that their voices are heard,” he said.
The Australian Red Cross is one of the few organisations that has learned to work very effectively in equal partnership with HIV-positive people. Chamberlain described the way that the Red Cross set out to work in partnership with APN+ and other positive communities and had learned some useful lessons for other organisations. It is just a pity that his words were heard by so few.
It might be useful to work such a subject into a key plenary for the next International AIDS Conference, in Toronto next year.
Apart from this poorly-attended session, the remainder of the program paid scant attention to the involvement of positive people, and sometimes didn’t see the need to refer to them at all.
An example was a paper on the rollout of antiretrovirals in one particular country: it included a slide on stakeholders in the process, and a slide on the need for support. But neither of these mentioned ‘patients’ or positive people and their groups at all. I asked the presenter during question time whether she saw a place for positive people to be involved in any way in the rollout of antiretrovirals, and she replied that they had indeed had dialogue with the local positive group, but whether or not that was true (and the local group denies that there was any meaningful dialogue), it was not included in the presentation. That suggests that GIPA in so far as it exists in that project was tokenistic rather than central.
In a skills-building workshop entitled “Opening the Door to the Global Fund”, I had the chance to open up a discussion on another obsession of mine. Mike Matthews and Julie Archer from the Global Fund secretariat in Geneva wisely made a snappy and short presentation of seven minutes duration, and then we spent the rest of the time talking about how some of the issues with the Country Coordinating Mechanisms (CCMs) might be addressed.
These CCMs are the in-country bodies that coordinate grant proposals and then monitor the implementation of the projects approved. In 2004 a new requirement was issued that a minimum of 40 percent of representatives on the CCMs should be non-government, and of that 40 percent, there must be representation of people living with HIV/AIDS and/or TB and malaria.
For most positive people living in the Asia-Pacific region, the single largest current funding opportunities for treatment, including antiretrovirals, come from the Global Fund. Positive people are more likely than any other interest group to fight for priority in the funding grants for access to treatment. Yet their voices under such a set-up are hard to hear.
Nowadays the Global Fund tells PLWHAs that they should not sign off on the proposals unless they are satisfied with their level of participation. If they do not sign, the grant application is invalid. The pressure on PLWHA to sign irrespective of whether they did really manage to participate is enormous. Several people have told me they were browbeaten into signing against their will.
The question might be in the interpretation of involvement and participation. Most members of the CCMs are government ministers, highly qualified academics and others used to dealing with papers and communications that are totally outside the experience of most positive people in the region. Again to use Elden Chamberlain’s words, “We may sit at the same table — but who gets to serve?”
HIV-positive members of the CCM are placed at an enormous disadvantage in terms of being able to really participate and have their voices heard.
It seems to me that GIPA more than anything else is a mindset. It requires HIV-positive people to want to get involved, to stand up despite all the stigma and discrimination and fight for involvement publicly. But it also requires all those involved in policy, strategy and implementation of HIV/AIDS programs to want the involvement of HIV-positive people. That can only happen if they really understand and believe that without that the chances of a successful program are reduced very significantly. Unless the government-dominated side of the relationship sees the value in listening to positive voices, they will never create the right environment in which they can be heard.
The organisers of the ICAAP conference did everything they could in putting a program together to encourage involvement of positive people, not just lip service. But the concept really still does not figure in the minds of non positive players.
“GIPA has been around for 11 years, and we’re no further down the road to achieving it,” said Greg Gray, speaking about the Asia-Pacific context.
In an interview with the conference newspaper, Paul Toh, who worked as GIPA advisor for UNAIDS in Thailand for seven years, asked: “How many PWHAs are decision-makers in HIV/AIDS at country level?” and “How many PWHAs are involved with government policy making?” The answer for most, if not all, countries in the region, he said, is probably zero.
Maura from Igat Hope in PNG stole the show during the closing ceremony with a wonderfully inspiring speech. “Meaningful involvement of PLWHA and the Greater Involvement of PLWHA which has been a common theme through this conference requires true participation, which in turn cannot be achieved without complete empowerment and we need to walk together,” she said.
“To do this WE need action, WE need committed leadership and WE need to bring back real community driven advocacy, and where it doesn’t yet exist WE need to develop it.”
Amen to that.
*John Rock* is NAPWA’s International Portfolio Convenor.
