UN Secretary-General Ban Ki-moon met with participants from the Community Dialogue space during the official opening of the Global Village at AIDS 2008
Credit: UNAIDS/agencialibrefoto

At the very heart of the XVII International AIDS Conference is the Global Village, an area of over 8,000 square metres open to everyone attending AIDS 2008, including community organizations from around the world, local and national groups and the general public.

On 4 August, United Nations Secretary-General Ban Ki-moon and UNAIDS Executive Director Dr Peter Piot officially opened the Village which for the coming week will be a space where thousands of visitors—the general public, communities living with and affected by HIV, policy-makers, researchers and other stakeholder groups—will interact and debate, share knowledge and skills, build coalitions and exchange ideas.

On 4 August, United Nations Secretary-General Ban Ki-moon and UNAIDS Executive Director Dr Peter Piot officially opened the Village
Credit: UNAIDS/agencialibrefoto

The aim of the space is to enable greater civil society involvement and strengthen diverse communities’ involvement and participation in shaping the response to HIV.

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.

The President of the General Assembly
H.E. Mr Srgjan Kerim (center) chaired the
interactive civil society hearing.

Representatives of civil society organizations addressed Member States and observers on Tuesday 10th June in an interactive hearing at the High-level Meeting on AIDS entitled Action for Universal Access 2010: Myths and Realities.

The hearing was chaired by the President of the General Assembly and the UN Secretary-General made opening remarks. Following the opening, civil society speakers brought frontline experiences to the session, addressing the challenging issues that underlie the spread of the epidemic. They stressed the importance of accountability and involvement to fulfil targets set on the Declaration of Commitment and Universal Access.

Representatives of civil society organizations
addressed Member States and observers on
Tuesday 10th June in an interactive hearing
at the High-level Meeting on AIDS

The speakers also highlighted some of the myths that have become barriers to an effective response to the epidemic. The hearing provided an open forum to discuss these myths and realities and the urgent work needed to achieve universal access by 2010.

Civil society speakers addressed issues related to achieving universal access from a number of different perspectives such as HIV and human rights, sex workers, sexual minorities, people who use drugs, women and girls, children, access to treatment, HIV-related travel restrictions, mobility and migration, workplace responses and civil society involvement and AIDS accountability. 

Following an open call for nominations, which yielded more than 250 proposed speakers, the civil society Task Force recommended speakers to the President of the General Assembly. The selection was based on criteria established by the Civil Society Task Force, which included experience, people living with HIV, gender and regional diversity.

Gregg has been working on
behalf of people living with
HIV since 1990 when he
joined ACT UP in the United
States.

One needs to look no further than to Gregg Gonsalves as an example of leadership in AIDS.

His unswerving commitment to accelerating access to HIV treatment to those most in need and to improving HIV-related human rights, combined with his constant drive for clarity and transparency within the many institutions engaged in AIDS work has no doubt helped improve the lives of many.

Gregg has been working on behalf of people living with HIV since 1990 when he joined ACT UP (AIDS Coalition to Unleash Power) in the United States. In the early nineties, very little was understood about how the virus worked or how the immune system was damaged by it and there were no effective treatments to counter the progress of the disease. Most discussion about AIDS was taking place in the domain of the scientific community.

In search for answers that could bring advances in treatment for people around them dying as a result of AIDS, Gregg and other activists in ACT UP began to attend meetings of AIDS Clinical Trials Group (ACTG) researchers and other scientific fora.

He was drawn into scientific research, in spite of studying studied Russian Language and Literature and English at University, immersing himself in the latest scientific papers and journals in order to be able to have a dialogue with the virologists and basic scientists and pharmacists.

Agents of change

This group of United States based activists was the first to stand up and insist that they have a role to play as people living with HIV and demand the drugs needed to save their lives, the information to know how to use them and how to advocate for them.

Gregg and others determinedly lobbied the scientific community, the pharmaceutical industry and politicians and got results. In many ways today’s global AIDS advocacy movement has some of its roots in the culture that was created by this movement. It spawned the idea of a global public health movement based on the needs of people with the disease.

The AIDS landscape is very different today. Almost two decades later the epidemic has grown and 33 million people across the globe are living with HIV. Progress has been made in developing antiretroviral therapy that can slow down the progression of AIDS. However, access to this treatment, as well as to other prevention and care services, continues to be beyond the reach of many millions of people.

Passionate defender of rights

Today, Gonsalves continues to work to improve people’s access to HIV treatment in Southern Africa, as regional coordinator of AIDS and TB treatment literacy and advocacy programmes for the AIDS and Rights Alliance of Southern Africa (ARASA). In this region alone more than a third of last year’s new HIV infections and AIDS-related deaths occurred. ARASA’s mission is to promote a human rights approach to HIV in Southern Africa through capacity building and advocacy.

“Gregg is a formidable advocate and leader who has brought much-needed energy and passion to AIDS responses in North America, globally and now, in his current position, across Southern Africa,” said Andy Seale, UNAIDS Eastern and Southern Africa Senior Regional Adviser, Advocacy, Communications and Information.

“He and many other leaders like him in civil society have an important role to help ensure that all stakeholders remain alert, increasingly accountable to the people most affected by this epidemic and ready to respond to the many challenges ahead.”

Gregg is also a founding member of the International Treatment Preparedness Coalition, a network of more than 1000 people from 125 countries advocating for universal access to HIV/AIDS and TB treatment.

The John M. Lloyd Foundation recently selected Gregg as the first-ever recipient of the $100,000 John M. Lloyd AIDS Leadership Award. It is a fitting recognition for this AIDS leader.

L to R: Violeta Ross Quiroga, the PCB
NGO alternate delegate from Latin
America and the Caribbean with Marcel
Van Soest, Executive Director of the World
AIDS Campaign (WAC). 02 April 2008,
Geneva. Photo credit: UNAIDS

Civil society plays a key role in the response to the AIDS epidemic in countries around the world. Therefore it is imperative for UNAIDS to secure input from the full spectrum of civil society, including people living with HIV, at its Programme Coordinating Board meetings.

UNAIDS is guided by a Programme Coordinating Board (PCB) which is composed of representatives of 22 governments from all geographic regions, the ten UNAIDS Cosponsoring organizations, and five representatives of nongovernmental organizations (NGOs) who are elected on a regional basis. The UNAIDS PCB NGO Delegation is the first civil society delegation formally represented on a UN governing board.

In an effort to further enhance participation of civil society in policy decision-making at the global level, the PCB NGO Delegation has created a Communications Facility (CF), an independent mechanism that will strengthen the capacity of the delegation to bring forward a unified and consolidated message from their constituencies to the Board meetings of UNAIDS. Therefore, The CF will compile regional and country level civil society priorities on AIDS for the NGO Delegation to advocate for them at the global level.

This CF was established on 2 April 2008 with the recruitment of a consortium comprising the World AIDS Campaign (WAC) and Health & Development Networks (HDN) which will be its host for the next two years with funding provided by UNAIDS. This follows a competitive bidding process that was launched by the UNAIDS Secretariat after the 20th meeting of the PCB agreed on the establishment of a Communication Facility. The PCB will evaluate the progress made by the CF at the end of the two year period.

Under the leadership of the PCB NGO Delegation, the CF plans to work in two ways. On the one hand, it will ensure that the broad and diverse community voices are heard and influence the development of international policies that meet their needs. To that end, it will host conference calls for the Delegation; draft of the Delegation stakeholders map and related information needs; capacity-building for Delegation members on presentation and negotiation skills or drafting the Delegation’s annual report.

On the other, it will better inform civil society about the decisions and recommendations adopted at global level by the PCB by developing and distributing PCB related fact sheets or post-PCB meeting summaries; and develop an interactive web site among other activities.

The CF will support the non-governmental delegation by also linking them to other civil society delegations focusing on HIV such as those to the Global Fund to fight AIDS, TB and Malaria (GFATM) and UNITAID, and actively develop and nurture a ‘pool’ of civil society representatives who will provide technical support and advice to the NGO Delegation on issues relevant to the global HIV issues and the UNAIDS PCB agenda.

‘’For NGOs sitting on the UNAIDS board, it is important to have a strong independent and coordinated communication and outreach tool to ensure that the community voices are faithfully represented in the board”, said Violeta Ross Quiroga, the PCB NGO alternate delegate from Latin-America and the Caribbean.

“The voices of communities must be heard and they must include all segments of the wider civil society working towards Universal Access targets. This stands as one of the core goals of the Communication Facility, which is also another step towards the achievement of the GIPA principle.’’ She added.

The 22nd Meeting of the Programme Coordinating Board will take place in Chiang Mai, Thailand, 23 - 25 April 2008.

Since the early nineties Patricia Pérez has
raised her voice to speak out for and
advocate for the rights of women living
with or affected by HIV.

Leadership is the expression of a person whose aim is to transform something for the better and to develop this potential in others. Often leadership abilities are brought to the fore by certain crises in life enabling people to discover abilities that they didn’t know they had.

Activist Patricia Pérez is one such person. Since the early nineties she has raised her voice, along with other activists, to speak out for and advocate for the rights of women living with or affected by HIV.

Patricia Pérez was only 24 years old she found out she was HIV-positive. That was in 1986 and doctors told her that her life-expectancy would not be longer than two years. Today Pérez is the coordinator of the Latin American branch of the International Community of Women Living with HIV/AIDS (ICW), an organization of truly global reach which she helped to found.

Personal journey of discovery

Patricia was working as a gymnastics teacher in the city of her birth, Buenos Aires, Argentina at the time of her HIV diagnosis. After the shocking news she could only think one week at a time and couldn’t imagine a future life.

One day she decided to no longer dwell exclusively on her own situation and shifted her focus to others. She formed a volunteer group at the Muniz Hospital for people living with HIV that met weekly together to listen and support each other. Perez realized that all people living with HIV shared specific needs and experiences and that strength came from connecting together in networks.

Five years later she took part in a demonstration in London of 10,000 people living with HIV and realised that she was not alone and the power of a collective voice.

Early days of ICW

In 1992 at age 30, Patricia helped found
the International Community of Women
Living with HIV/AIDS (ICW).

In 1992 at age 30, Patricia helped found the International Community of Women Living with HIV/AIDS (ICW). This milestone in the history women’s AIDS advocacy happened when she and a group of 30 HIV positive women from different countries were attending the 8th International Conference on AIDS held in Amsterdam that year. Inspired by the idea that by working together they could make a difference to the lives of all women living with HIV, they drew up a charter on improving the situation of women living with HIV.

Today ICW has 8,000 members in 57 countries and is the only international network led by and for of HIV positive women.

“While the epidemic continues to have a devastating impact on women, Pérez, and other positive leaders are vital voices against stigma and discrimination.  They have led the way in  advocating for prevention, treatment, care and support services for people living with HIV, including those specifically tailored to the needs of positive women,” said UNAIDS Senior Partnership Adviser, Kate Thomson.

Women and HIV

Perez continues today to advocate at regional and international levels for women’s rights and greater involvement of women in clinical trials and scientific research on drug efficacy and HIV progression. She regularly organizes symposia and conferences across Latin America and participates in international events.

Women comprise about half of all people living with HIV worldwide and in sub-Saharan Africa, where the epidemic is worst, they make up an estimated 57% of adults living with HIV, and three quarters of young people living with HIV on the continent are young women aged 15-24.