Feature story

Positive Leadership Summit 2008

31 July 2008

Deborah Williams, Chair of the Global Network of People Living with HIV and AIDS (GNP+) (left) and Dr Peter Piot, UNAIDS Executive Director at opening of Living 2008
Credit: UNAIDS/Agencialibre Fotografía

UNAIDS Executive Director delivers plenary speech at Summit opening.
350 HIV-positive global leaders and advocates from 88 countries have come together to discuss a range of issues in the AIDS reposnse impacting people living with HIV worldwide.
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Kate Thomson, Chief of Civil Society
Partnerships at UNAIDS

30 July 2008

Kate Thomson is Chief of Civil Society Partnerships at UNAIDS. She has been involved in AIDS activism for over twenty years - firstly in the UK, where she helped set up the first positive women's organization - and then internationally through work with the international people living with HIV conferences, the Global Network of People Living with HIV/AIDS (GNP+) and the International Community of Women living with HIV (ICW). She is also a founder member of UN+. 

Ahead of the Positive Leadership Summit which will begin in Mexico City on 31 July, unaids.org asked Kate to reflect on the changing leadership role of the global positive community and today’s outstanding issues.

Kate, you have been involved in AIDS activism for many years, what progress have you seen over this time?

The changes are phenomenal. Back when I first got involved in early 1987 there was a lot less hope. There were far fewer positive activists and the vast majority were northern gay men - almost no positive women were involved. We were determined to do something – to ask questions and demand answers, to push for better services and support, better science and treatment that worked, to push for policies that protected us against the discrimination and human rights violations that our friends were experiencing on a daily basis. This is still the reality for many people living with HIV (PLHIV) around the world.

However, for a fortunate and relative few, we are alive to see the results of our activism, receiving the services we were fighting for, and becoming increasingly involved in creating the policies in our countries and globally. Furthermore, over the years, we have seen more activists from the South become involved in global advocacy. Holding the PLHIV conferences outside of Europe was an important step in recognizing and encouraging this process.

The 2001 UN General Assembly Special Session on HIV/AIDS (UNGASS) and the Declaration of Commitment provided our communities with a tool with which to hold our governments accountable and strongly articulated the necessity of creating partnerships with PLHIV and other key populations. The establishment of the Global Fund gave us the means to raise and distribute far larger amounts of money for AIDS (and TB and malaria) than we’d ever have imagined a short time before.

Most of the activism that happens occurs at grassroots level and seldom gets acknowledged at the international level or feeds into global policy discussions. This is one of the greatest weaknesses and challenges that the global PLHIV movement faces. Strengthening those links between the local, regional and global levels is something that will continue to be an ongoing struggle for PLHIV networks in the foreseeable future.


The LIVING 2008 Positive Leadership Summit will begin on 31 July in advance of the XVII International AIDS Conference. Can you tell us about the significance of this event?

Given the current climate where the rights of PLHIV are being eroded in many areas, where there is a growing complacency among donors regarding scaling up towards universal access and a false perception that the AIDS crisis is over, its essential that PLHIV come together and, as the title of the Summit states, reclaim the advocacy agenda for ourselves rather than continue to let others define some of the most critical issues we are facing.

It’s important that we can go into the International AIDS conference with a revitalized collective voice around these issues and that we are able reenergize the debate once we return to work with local positive communities in our countries.

What are the priority issues for the movement of people living with HIV?

Well, if you look at the agenda for the Leadership Summit you will see four main issues highlighted.

  1. Universal access to HIV treatment, care and prevention programmes
  2. Positive Prevention
  3. Sexual and reproductive health and rights of people living with HIV
  4. Criminalization of the transmission of HIV

Cross cutting issues include leadership, women and most at-risk groups, while overarching issues will include addressing gender inequality, increasing involvement of young people living with HIV; stigma and discrimination; the greater involvement of people living with HIV (GIPA); and creating effective partnerships.

The list is of course not exhaustive. For instance, some of the other issues of great concern to the PLHIV movement include: the fact that some governments are turning their backs on commitments made around universal access; that we still need to ensure adequate funding for AIDS programming and that the money raised reaches the populations most in need; that funding for health systems should not be pitted against funding for AIDS; and that broader human rights issues affecting PLHIV and key populations are addressed and protected.

People living with HIV are increasingly recognized as a vital part of global and local HIV responses. Is GIPA (the greater involvement of people living with HIV) actually happening?

A lot of lip service has been paid to the greater or more meaningful involvement of PLHIV in the response but in reality progress is slow. In the early days just being openly living with HIV was sometimes seen as enough reason to invite someone to the table. But what is clear now is that relevant skills and professionalism are essential or otherwise our presence is tokenistic. The lack of meaningful participation at country level due to lack of capacity of PLHIV networks is a common problem. For this reason, it’s essential that the involvement of PLHIV in all aspects of the response be adequately funded. This must include training in all technical areas, including policy work.

What unites the positive community, transcending all borders and backgrounds? Is there such as a thing as a shared strategy within the global PLHIV movement?

Of course just because we are living with HIV doesn’t make us all agree on everything!

However, there are some experiences that do create a unique bond. I’d say I have a special relationship with those PLHIV who I’ve known since the mid 1980s. We may disagree, but it’s like a family that’s been through tremendous pain and loss, but also survived and collectively achieved so much in spite of the odds. For this reason we will always be linked.

If you think about the global PLHIV movement, although we are talking about massively larger numbers of individuals involved, some of those elements are still there. Shared common experience of real or perceived stigma, of fear of illness and dying, of collectively fighting for something you believed in – and a tremendous will to live and enjoy life to the full. These are all common threads that weave in and out of our lives.

When it comes down to holding particular positions on issues such as testing, positive prevention and so on it’s less easy to achieve consensus, but nonetheless, I think the overall commitment to upholding the human rights of PLHIV is a uniting factor – as is the belief in universal access to prevention, treatment, care and support.

What is UNAIDS participation in the event?

UNAIDS is a member of the Living Partnership, a group of organizations who are committed to the right of PLHIV to self determination and that the meaningful involvement of those living with HIV in the AIDS response is crucial to its success.

UNAIDS staff members have participated on the working groups organizing this event and media from day one. Several of us attended the planning meeting for Living 2008 that took place in Monaco in January of this year hosted by HSH Princess Stephanie of Monaco (a UNAIDS Special Representative) and Fight AIDS Monaco.

During the event our Executive Director Peter Piot will speak at the opening plenary and Special Representative HSH Princess Stephanie will address the meeting through a video message.

For all of us, being a part of this event has been a priority – leadership of people living with HIV is obviously an issue close to our hearts as PLHIV, but also a priority for the UNAIDS programme as a whole.

Finally, what are your hopes for the future? What would you like to see on the agenda of “Living 2018”?

By 2018 I hope we will be talking about effective vaccines and microbicides and new and effective drugs for TB and hepatitis C as well as for HIV.

I hope that the stigma that surrounds HIV will no longer exist — that discrimination doesn’t continue killing people just because they are somehow different and that GIPA will be a redundant concept.

I hope it will no longer be necessary to hold these meetings, that AIDS activism will be a thing of the past and that we will all have moved on to new areas of work – but this is probably far too wishful thinking.