Episode 3 - 1994-1998: The discovery of a revolutionary treatment that entails accessibility issues
Culture clash challenges: The Yokohama Conference
When Japan was selected as a host country several years prior to the conference it was in anticipation of the expected epidemic in the region and to recognize Japan as the only Asian country to acknowledge some of its citizens were living with HIV. From a scientific point of view Japan had advanced biomedical research on HIV as well as pioneering research on another retrovirus, HTLV-1, which causes neurological disease with immunodeficiency and is inherent to some Japanese islands.
Japanese organizers prepared thoroughly for the conference, seconding a representative from the Japanese Ministry of Health for two years as a liaison officer to the Global Program on AIDS in Geneva to help plan for the Conference. The organizers also worked methodically to avoid friction between a conservative Japanese society and western activists, who often used provocative tactics that were anathema in Japan. Organizers held training classes for hotel staff to ensure they were polite to gay couples who wanted to share the same room or to the San Francisco drag queens promoting safe sex and condom use. Customs and immigration officers were drilled on how to respond to conference delegates from sex workers rights’ groups (sex work was officially forbidden in Japan) and on the need to allow import of methadone for drug users on opioid substitution therapy. The hope of the IAS and its local co-organizer was that the enormous amount of preparatory work would leave permanent impressions in the attitudes, legislation and policies of the host country and – hopefully – in a region what was only starting to wake up to its own growing epidemic.
The Treatment Revolution
In 1996 even the Opening Ceremony of the XI International AIDS Conference in Vancouver signalled that this was going to be a very different conference from its predecessors. One of the speakers was a white-haired grandmother living with HIV, who said, “I am sure that you are asking yourself how a nice old lady got HIV infected. But I don’t intend to tell you, because it just doesn’t matter.” It was a striking and effective way of addressing assumptions and prejudices about a disease that was affecting every sector of society.
Four Canadian physicians and scientists co-chaired a conference that was finally able to report a significant treatment breakthrough. Clinical researchers reported that using a combination of antiretrovirals – nucleoside reverse transcriptase inhibitors and protease inhibitors or non-nucleoside reverse transcriptase inhibitors – had achieved remarkable clinical results. Highly active antiretroviral therapy (HAART) reduced the viral load in peripheral blood to undetectable levels; allowed CD4+ cells, key markers of immune function, to increase; and, most importantly, saw mortality and morbidity among patients drop dramatically. After so many years of disappointing clinical results and bleak prospects, the atmosphere in session halls was electric. HAART revolutionized HIV treatment and care, and for most patients in high-income countries, the prognosis for HIV disease shifted from almost certain fatality to a chronic, manageable illness. The “Lazarus Syndrome” was coined to refer to patients who had returned from the brink of death to good health, and David Ho, one of the lead clinical investigators, was named Time magazine’s Man of the Year. Many also hoped that prolonged antiretroviral therapy would be able to eradicate HIV, although to date this has not been possible due to the persistence of HIV in latent reservoirs in the body, such as in the brain.
However, it quickly became clear that the complex and expensive regimens of antiretrovirals at that time, coupled with sophisticated clinical and laboratory monitoring requirements, meant that areas of the world where the epidemic was most devastating seemed unlikely to reap the benefit of these new treatments. The theme of One World, One Hope began to ring increasingly hollow.
Bridging the Gap: Geneva 1998
The Geneva Principle, established in 1998, provided for a balance between community and science in the conference programme. The theme of the Geneva conference, Bridging the Gap, touched on several issues: the gap in treatment access between wealthy and poor; the gap in power and autonomy between men and women; and the gap between governmental authorities and civil society.
As antiretroviral therapy continued to decrease morbidity and mortality in wealthy nations, there were increasing demands to address treatment access in the developing world. At the same time, problems with some antiretroviral drugs were reported, including sometimes serious side effects, the difficulty of adhering to the complex regimens and viral resistance.
The IAS initiated the Young Investigator Awards at the Geneva conference to recognize scientific excellence among young researchers. The awards were selected by a panel of senior scientists on the basis of submitted abstracts and have become a popular feature of every subsequent conference.