Episode 2 - 1989-1993: IAS and the early conferences - Frustration and hope
Montreal and San Francisco
It was clear even before Canadian Prime Minister Brian Mulroney opened the 1989 conference in Montreal that activism was going to occupy centre stage. The Prime Minister, Zambian President Kenneth Kaunda and other celebrities who were speaking at the Opening Ceremony gathered in the VIP room before proceeding to the podium, but things did not go according to plan. Three hundred activists occupied the stage and the front rows reserved for diplomats and other VIPs, refusing to move. Canadian activists were protesting the lack of a federally funded AIDS strategy; US activists were denouncing the US entry ban on people living with HIV, as well as the sluggish pace of Food and Drug Administration (FDA) drug approval; and all of the activists were advocating for greater involvement in both clinical research and in the conference, which had to date not included community representatives in the planning process. After more than an hour of negotiation, security and conference representatives convinced the activists to leave the stage, although they remained in the front rows to heckle the Prime Minister and Quebec provincial government officials. While 7,000 conference delegates sat patiently in the crammed conference hall, Kenneth Kaunda rallied spirits in the VIP room by singing and clapping with his entourage. When he eventually spoke, he revealed that his son had died of AIDS in 1986; he was the first African leader to speak publicly about AIDS in his own family.
A newspaper headline, “International AIDS Conferences will never be the same after Montreal”, captured the sentiment, ensuring that future conferences would incorporate political discussion, debate and protest along with developing scientific and clinical issues. Still, the demonstrations in Montreal paled in comparison to those in San Francisco at the 1990 conference. At the Closing Ceremony, following days of protests, the speech of the US Secretary of Health and Human Services, Louis Sullivan, was drowned out by the whistles and sirens of activists who were furious at the tepid federal government response to the epidemic and the lack of effective treatment for people living with HIV. Sullivan was pelted with objects as he spoke and demonstrators held black sheets in front of the television cameras broadcasting his speech.
In preparations for these and future conferences, the IAS stressed the importance of avoiding police violence or other physical interference with activists. Although it has come under fire at various times by activists, industry representatives and government officials, the IAS has since then been remarkably successful at balancing freedom of expression and protest with allowing invited speakers and other conference participants to be heard. The strategy has been largely successful and the principle of freedom of expression has prevailed.
The tone and pace of the 1991 conference was quieter and more reflective than those of earlier meetings. The conference theme was Science Challenging AIDS, and the logo of Michelangelo’s David and Florence’s associations with Dante Alighieri’s Divine Comedy were intended to remind delegates of the elevated position that science and wisdom have in Dante’s Paradise at a time when both had failed to lead to an effective response to AIDS.
Ugandan President Yoweri Kaguta Museveni and Professor Vulimiri Ramalingaswami, from the All India Institute of Medicine, spoke at the Opening Ceremony, providing important perspectives on the growing burden of the epidemic in their respective regions. Africa, a continent already plagued by post-colonial instability, corrupt government, internecine war, high child mortality, enormous gender disparities and poor economic development prospects, was now facing an epidemic that would ultimately shorten the average life expectancy in some countries by two decades.
Professor Ramalingaswami finished his speech by citing Mahatma Gandhi: “I am hard-hearted enough to let the sick people die if you can tell me how I can prevent others from falling ill.” Today, treatment and prevention are conceived as inextricably linked, but at the time, Ramalingaswami’s comments reflected a growing desperation to halt the spread of HIV at a time when there was no effective treatment.
Amsterdam and Berlin
The Amsterdam conference was organized in just one year, following the relocation of the conference from Boston to protest the US ban on people living with HIV entering the country*. The Harvard-Dutch organizers rose to the challenge; Jonathan Mann, who had recently resigned from WHO, had become Professor at the Harvard School of Public Health and set the tone as Conference Co-Chair with a focus on human rights as a public health imperative.
Although the media plays an important role at the conferences in disseminating information about HIV and reporting on the latest scientific advances, there have also been occasions when sensationalistic journalism has provided misleading or confusing HIV information that takes years to correct. For example, isolated cases of acquired immune deficiency have been known to appear in adults. Despite the fact that these cases of idiopathic CD4+ lymphocytopenia have no relation to HIV, their occurrence was trumpeted around the world as a sign of another major global epidemic caused by an unknown virus. A year-long, worldwide search by WHO for HIV negative AIDS cases revealed that there was no such epidemic. AIDS denialists appeared to be behind the rumour, which was consistent with their belief that AIDS is not caused by HIV. Another example was the media story that HIV could be spread by kissing. During a press conference, a renowned molecular biologist had answered that HIV transmission might be possible through kissing because the saliva of an infected person contains HIV. The story was widely reported, the harm was done and millions of people became unnecessarily anxiety-ridden despite the fact that there is no epidemiologic evidence that HIV is transmitted by kissing.
The choice of West Berlin as the venue for the 1993 conference was made during the Cold War. By the time the conference was held, the Berlin Wall had fallen, increasing its symbolic value at the conference. “Teardown the walls” became the refrain of activists during the conference: the walls between the HIV positive and HIV negative; between the wealthy and the poor; and between embattled minority populations and a public that too often saw them, rather than the virus, as the problem. The choice of Berlin was controversial; to many the city was still associated with Nazi Germany and the slaughter of millions of Jews, homosexuals and other “undesirables” in concentration camps during World War II. However, Berlin was chosen to remind delegates about the importance of fighting racism and discrimination in an epidemic which had brought many of those issues to the forefront of the response.
1993 proved to be a disappointing year in HIV research; the much-anticipated results of the multi-year Concorde trial of AZT monotherapy showed no medium or long term benefit. As the economic impact of the AIDS epidemic on countries was becoming more and more obvious, the head of the World Bank was invited to speak, once again illustrating how the broadening scope of the epidemic influenced the content of the conferences.
* THE US TRAVEL BAN
The US government banned HIV-positive travellers from entering the country in 1987, citing both public health concerns about HIV transmission and the potential financial burden on US health services. The idea that communicable diseases can be halted by quarantine and isolation has been prevalent throughout human history, and is rarely justified as an effective public health measure. Many people working in HIV at the time saw moralistic and racist underpinnings to the travel ban that was part of the reactionary political rhetoric at the time about homosexuals, injecting drug users, Africans and other communities that were disproportionately affected. Ultra-conservative US Senator Jesse Helms, the originator of the 1987 ban and its strongest advocate, famously stated in a New York Times interview, “We’ve got to have some common sense about a disease transmitted by people deliberately engaging in unnatural acts.” The IAS worked with the local host and public health authorities, trying to convince the White House to overturn the travel ban. A letter was written by the IAS and sent to President George H. Bush, that stressed the expanding global threat of HIV, the importance of the conferences, and the lack of a public health rationale for the ban. The letter also referenced a resolution by the European Parliament and scientists from European countries discouraging participation in the San Francisco conference. In March 1990, the IAS convened a meeting of its Advisory Board, and issued a resolution condemning the US travel ban as a policy that lacked any valid scientific or public health rationale, and confirming that the IAS would not sponsor any conferences in countries restricting the entry of HIV-positive travellers. The US administration issued a waiver so that HIV-positive delegates could attend the San Francisco conference but refused to revoke the ban, which was then written into law. The 1992 conference, scheduled to be held in Boston, was relocated by the IAS to Amsterdam, The Netherlands. The US travel ban was finally lifted by President Obama in 2010. After a 22 year absence the conference returned to Washington DC in 2012.