For Eric Sawyer, the late 1980s was a "war time situation". "People with AIDS were fighting for their lives and for their friends", says Sawyer, an AIDS activist and co-founder of ACT UP New York. By 1988, seven years after the first case of AIDS was reported, AIDS was causing more deaths in the US then there were in the Vietnam War, and between 5 and 10 million people were estimated to be infected with HIV around the world. Yet governments, media and society in general were not giving AIDS adequate attention. So, "people with AIDS had to literally take to the streets and block traffic and take over government buildings", Sawyer recalls.

Sawyer had been on the front lines of the AIDS epidemic since developing his first HIV-related symptoms in 1981, before AIDS was officially identified. For him and for thousands of other activists around the world, the formation of World AIDS Day in 1988 was one of the few moments in the year where the growing tragedy of AIDS would finally get attention around the globe.

Now at its 20th anniversary, World AIDS Day continues to be the focus of global solidarity for a pandemic that has led to over 25 million deaths with an estimated 33 million people currently living with HIV worldwide.

World AIDS Day was reportedly the brainchild of the late Jonathan Mann, at the time the director of the Global Programme on AIDS (GPA) at the World Health Organization. After positive reactions to the idea of World AIDS Day by over 100 health ministers at the January 1988 London gathering focused on AIDS and at the 1988 International AIDS Conference in Stockholm, the World Health Organization declared 1 December 1988 as the first World AIDS Day, which was recognised and supported by the UN General Assembly in October 1988.

"We wanted to provide a platform so that people who were working on the issue at any level could get involved", says Tom Netter, who worked with Mann as the head of the GPA's public information office. Fostering a sense of solidarity was paramount, says Netter, "so that people could do things at the grassroots level and feel part of the global response at that time."

Netter recalls that in 1988, despite the short planning time, an event was held in every member state. "That was eye opening", he said, "It showed that people wanted to have something that they could grab on to, to feel part of the overall response." In the World Health Organization itself, panels from the AIDS quilt were displayed. "People found that very moving . . . it showed the individuals affected."

Within three years, the activities around the day "became something that was going to happen spontaneously…People on the ground took off with it", says Netter.

Unique momentum

The energy behind World AIDS Day, and the activism that has characterised the response to AIDS among civil society, is unique.

Prior to AIDS, Netter states, "there wasn't really so much of an advocacy movement regarding diseases or people who were ill. AIDS really was the first that mobilised people."

It was the people most affected who brought the urgency, passion and accountability to the movement. Sawyer recalls, "Early on the most significant leadership was actually done by people with AIDS themselves".

Whilst early activists targeted authorities' slow response to AIDS, that didn't mean that scientists and activists were on opposite sides, says Professor Lars Kallings, the first president of the International AIDS Society, also founded in 1988. "If you think from the beginning, before there was any treatment, the doctors felt very helpless. They suffered by not being able to help their patients. Therefore, even scientists have been on the front lines, on the barricades, very often against the authorities, the government."

World AIDS Day has been a symbolic focus for this activism. It "gave people a sense that they were part of a larger movement than what they were involved in individually and locally", Netter states.

But this doesn't mean that one day is enough. "For me", says Frika Chia Iskandar, a young woman from Indonesia working with the Asia Pacific Network of People Living with HIV/AIDS (APN+), "it doesn't seem like 'World' enough, it is not public enough". For activists now, she reflects, the day itself doesn't make a difference when "our days are filled with AIDS". Yet, she emphasises, "For the public, though, it is at least one day where we think about AIDS, and it is still needed."

Greg Gray, an APN+ advisor who also carries a supporting role for the NGO delegation to the UNAIDS governing board agrees, "World AIDS Day has real value for raising awareness with the broader public. But when you are working with the grassroots community affected by HIV it doesn't connect as much. When you do it day in and day out, it becomes the norm. World AIDS Day is trying to get a bit of that message home to a much broader community."

Placing a spotlight on leadership

For Kallings, that broader community from the beginning included leaders. At times, the absence of leadership has been most apparent. "We had to push Ronald Reagan to get his tongue around AIDS", Kallings recalls. "That didn't happen until 1987 when tens of thousands of his countrymen had already died." But Kallings also recalls early World AIDS Day events where presidents and royalty participated, such as in Tanzania and Thailand. "That puts the limelight on AIDS", he says, "and showed solidarity in the country."

The danger, as Matilda Moyo, a steering group member of the Pan Africa Treatment Action Movement, points out, is that World AIDS Day becomes a "cheap opportunity for governments to make promises that they fail to deliver on". Sometimes media only focus on covering government's statements on the day, she says, and fail to lift up what challenges there are according to civil society working with HIV and AIDS on a daily basis.

Kallings, who is currently the United Nations' Special Envoy for HIV/AIDS in Eastern Europe and Central Asia, acknowledges that it "is a constant fight to get the leaders to leave the denial and indifference. One of my roles is to persuade leaders to use their power to influence the public concept because discrimination is very deep in the population and it will not change unless there is leadership."

The leadership required to address AIDS must come from all aspects of the community. "Leadership in HIV is nothing without political leadership", says Eunice Kapandura, a 25-year old positive youth activist from Zambia, yet adding, "when we talk of leadership we mean meaningful representation of the community." Archbishop Njongo Ndungane, founder and president of African Monitor, emphasises the role of religious leaders, who "should shout at the rooftops that AIDS is not a punishment from God but a medical condition which is preventable, manageable and treatable although not curable."

Within the AIDS advocacy movement, leadership has changed over these past 20 years, especially after the breakthrough in combination therapy, Sawyer says. Of the early activists who had been leading the fight, "a lot of them died, a lot of them went on to work full-time for AIDS organisations and after working 8-10 hours a day to provide care and support they no longer had time or energy for activism. And others who received treatment, they returned to their careers. That shifted leadership in both AIDS organisations on the frontline and government officials and researchers." Even though the pandemic still affects every country in the world and rages in Sub-Saharan Africa, AIDS fatigue seems to have hit particularly Western media and society. "The passion that people brought to the epidemic has pretty much been lost", Sawyer reflects.

Chia Iskandar wants to see young leaders in the response, but it's not just about their age. "It's not about youth, but about new ideas… We need to be able to keep the idealism alive - the mutual energy, mutual knowledge transfers, knowing that we are fighting the challenges, fighting the virus, not fighting each other." She adds that one of the critical aspects of leadership is "'passing on the knowledge' from the leaders who have 'developed' themselves in the response to the new 'young' leaders and working together."

With young people now the population most affected, Moyo affirms, "We need leadership that is creative, young and vibrant and brings fresh ideas on how to tackle the global challenge."

What remains key is that those most affected lead the way. "For myself being a person living with AIDS", Sawyer states, "it would be important to strengthen leadership of people living with HIV and AIDS and the affected community."

From one day to a campaign

In 1996 when the Joint United Nations Programme on HIV/AIDS (UNAIDS) became operational, it took over the planning and promotion of World AIDS Day. However, according to Anne Winter, head of advocacy and communication at the time, organisers soon felt that rather than only emphasise one day they wanted to encourage an extended effort over a long period.

Thus in 1997, the World AIDS Campaign was born, charged with focusing on longer-term messages and strategy. World AIDS Day became the highlight of a year-long emphasis.

With the campaign, Winter says, "we always tried to use issues that were innovative and would really move the agenda forward".

The themes chosen for the first two years - on children and young people - were in fact roundly criticised at the time. "People said this was just a way to get attention about the epidemic, that the epidemic is not about children", Winter recalls. But the theme highlighted that the extent and severity of the epidemic in the developing world was not widely known. "It was important to change the face of the epidemic and that people recognise it was a family disease and that children were very much affected by it in different ways."

In late 2004, the World AIDS Campaign became independent to broaden civil society ownership and participation. Based in South Africa and The Netherlands, the World AIDS Day theme is now chosen by its Global Steering Committee after a broad consultation with people involved in the response from all over the world. The themes often are repeated for two years to help get key messages home to the public and to leaders, and all of the themes are under the 2005-2010 campaign slogan, "Stop AIDS. Keep the Promise." targeting political leaders' commitment to reach universal access to prevention, treatment, care and support by 2010.

Leadership needed now

Kallings acknowledges that the response to AIDS today is much better than it was 20 years ago, but far more action needs to be taken. "Last year it was three million on treatment. That is a remarkable success. But it is still only one-third of people needing urgent treatment. The current financial crisis is a threat to that successful trend. It very much calls for continued lobbying and pressure to continue to get enough financial support not only to maintain the current level but to increase it to three times more and include more preventative measures."

Sawyer notes that World AIDS Day "remains one of the few days where the world pays a lot of attention to AIDS". Yet, with people living longer because of anti-retroviral medicines and the many other global issues needing attention, it seems the news value has faded. Despite the Western media fatigue, Sawyer notes, "we still have over 8000 deaths a day, 2-3 million dying and millions of new infections each year". As part of a think tank called aids2031, Sawyer is thinking of another anniversary - the 50th anniversary of the identification of AIDS - and hoping that leadership at this 20th anniversary of World AIDS Day will mean those numbers are tragedies of the past.

Written By Sara Speicher

The World AIDS Campaign
, based in Cape Town and Amsterdam, supports, strengthens and connects campaigns that hold leaders accountable for their promises on HIV and AIDS. "Stop AIDS. Keep the Promise" is the slogan for the World AIDS Campaign from 2005-2010.

World AIDS Campaign