TALKING ABOUT AIDS, WITH ALL THE WORLD WATCHING

The 16th International AIDS Conference opens in Toronto on Sunday and
will vastly differ from the first meeting, in Atlanta in 1985, four
years after AIDS was discovered.

What began as a relatively small forum for 2,200 scientists to share
their embryonic knowledge has evolved into a huge arena for many
groups, including patients infected with H.I.V., their advocates,
social workers, economists, lawyers and policy makers to share the
now huge body of knowledge.

I have attended all but two of the conferences since 1985, and I have
watched the meetings change, reflecting one of history's worst
pandemics. In some cases, they have helped shape the response to the
epidemic, influencing attitudes, politics, policy and treatment. They
have also have played a major role in lowering the price of
antiretroviral drugs in poor countries.

In the last six years, the conference has been held in South Africa
and Thailand. This was done in part to give scientists in modern
laboratories and hospitals their first view of the challenges in
delivering antiretroviral therapy in developing countries, where a
vast majority of the world's H.I.V. infected people live. These two
conferences also helped doctors in developing countries get up to
speed on AIDS and encouraged scientists to conduct research on AIDS
problems peculiar to their geographic area.

Many AIDS experts point to the last decade as the beginning of
efforts to narrow the gap between rich and poor countries in
providing fairer distribution of treatment and care for
H.I.V.-infected people. But the efforts started earlier. In 1988 at
the Stockholm conference, I heard discussions about ways that people
in poor countries might be given access to the same care and drugs as
patients in rich ones. The mainstay of therapy then was AZT, which
cost about $8,000 a year. Additional drugs were needed to treat the
many and often fatal opportunistic infections that developed when the
number of a patient's CD-4 immune cells fell too low.

Besides the scientists, patients and advocates, heads of state and
royalty have also attended some of the conferences.

King Carl XVI Gustaf of Sweden attended the conference in Stockholm.
Former presidents, including Bill Clinton and Nelson Mandela of South
Africa, have attended. Both have said they wished they had done more
to prevent AIDS when they were in office.

The Toronto conference will be the third held in Canada. Prime
Minister Brian Mulroney opened the 1989 meeting in Montreal, but his
successor, Jean Chretien, did not appear at the Vancouver meeting in
1996. The current prime minister, Stephen Harper, has not accepted an
invitation to appear in Toronto, disappointing the organizers.

But as Dr. Helene D. Gayle, the president of the International AIDS
Society, an independent professional group that is chief organizer of
the meeting, said, "AIDS conferences can sometimes be hard on politicians."

In Barcelona in 2002, demonstrators drowned out a talk by Tommy G.
Thompson, the secretary of health and human services in President
Bush's first term. In San Francisco in 1990, protesters prevented Dr.
Louis Sullivan, the secretary of health and human services under the
first President Bush, from delivering a closing speech.

The conferences have also had their more startling moments.

In a speech at the Durban conference in 2000, President Thabo Mbeki
of South Africa refused to acknowledge H.I.V. as the cause of AIDS.
Minutes later, he walked out of a televised forum as Nkosi Johnson,
11, spoke of being born with H.I.V. He wished, he said, that the
government would "start giving AZT to pregnant H.I.V. mothers to help
stop the virus being passed on to their babies."

In a K.G.B. disinformation campaign in 1986, a Soviet official told
the conference in Paris that H.I.V. had been genetically engineered
and that it had escaped from a government laboratory in the United States.

In 1996 in Vancouver, the audience cheered after a grandmother told
the conference: "How did I get infected? The answer is very simple:
It just doesn't matter."

The sessions at the first conference, in 1985, filled only a few
rooms in a convention center in Atlanta. There was a growing
understanding that the AIDS virus, which had yet to be named H.I.V.,
had been spreading silently for at least a decade before the disease
was first detected in 1981.

At the time, there were no effective antiretroviral drugs. Some
doctors were shunning AIDS patients. Hospital workers left meal trays
at patients' doors. Many people feared that they might become
infected from casual contact despite epidemiologic evidence to the contrary.

The cases in the United States, then fewer than 10,000, were mostly
among gay men, intravenous drug users and hemophiliacs. But the
totals were doubling every six months. In one presentation, Dr. Peter
Piot, a researcher who is now the executive director of the United
Nations AIDS program, reported a cluster of heterosexual cases in
Africa. But few knew how wildly the disease was spreading there.

A new H.I.V. test was about to be approved to protect the blood
supply, but there was intense debate over its use in testing people.
Activists proclaimed "No test is best" because of the stigma linked
to the disease and the lack of effective therapy. Now the federal
government wants all Americans to be tested.

Dr. Kevin M. De Cock, who now directs the World Health Organization's
H.I.V./AIDS program, recalled the audience's silence at that first
conference as pathologists described brain damage from the virus.

"The realization was sinking in that you were going to see dementia
and terrible neurological disease," Dr. De Cock said, and "everything
we were learning about AIDS in those days was, This is worse than we thought."

Two years later, on the eve of the 1987 conference in Washington,
President Ronald Reagan gave his first speech on AIDS. At that
conference, demonstrators protesting the slow drug approval process
claimed that they were being denied potentially lifesaving treatments
as scientists conducted lengthy clinical trials.

Dr. Jonathan Mann, then the leader of World Health Organization's
AIDS program, said the global epidemic had entered a stage in which
prejudice about race, religion, social class and nationality was
spreading as fast as the virus.

At the conference's end, the mood was restrained, but there was real
optimism that the widespread problems were not so awesome as to be
beyond control.

By 1988, when the meeting was held in Stockholm, there were more
discouraging findings for H.I.V. patients: a vast proportion would
develop full-spectrum AIDS within a decade of being infected,
countering earlier suppositions that a relatively small percent would
be struck down by its debilitating complications.

The Montreal conference in 1989 made me sad -- and angry -- when
President Kenneth D. Kaunda of Zambia delivered an apology for his
indifference to the epidemic, saying he had lost a son to AIDS in 1986.

A year earlier, denying my request to interview Mr. Kaunda about AIDS
in the Zambian capital, Lusaka, his press secretary scolded me for
going to Africa to report on an American disease. The president had
more important things to do, the aide said.

At the meeting, Mr. Kaunda pleaded with governments to support
scientists to find a cure for AIDS, saying failure would turn the
epidemic into "a soft nuclear bomb on human life." But in the years
of Mr. Kaunda's silence, hundreds of thousands of Africans had become infected.

Organizers moved the 1992 conference to Amsterdam from Boston to
protest the new United States' policy of denying visas to
H.I.V.-infected people. Since 1990, no conference has been held in
the United States.

In Amsterdam, researchers presented a study showing that young
American doctors were more reluctant to care for AIDS patients than
comparable groups of doctors in Canada and France.

The Berlin conference in 1993 was my dreariest. The epidemic was
worsening, and the outlook for major scientific advances seemed
bleak. A European study, presented at the meeting, showed that AZT
alone did little good over the long term.

For years, scientists said they had learned more about the AIDS virus
than about any other microbe. But skeptics were numerous because
therapeutic advances were few.

Then, in 1996, reports at the Vancouver conference showed that a
combination of new antiretroviral drugs, called protease inhibitors,
and older ones could successfully treat AIDS, extending the lives of
many people. Some patients got up from their deathbeds to live more
normal lives in what seemed like Lazarus.

If Coca-Cola could deliver its product in Africa, an AIDS expert said
in Vancouver, then the world could deliver AIDS drugs to poor
countries. The drug cocktails, which cost about $20,000 a year,
reduced the amount of H.I.V. detectable in the blood and increased
the number of T cells, a crucial component of the immune system. The
startling turnarounds in patients confirmed, in their own way, the
causal role of H.I.V. in AIDS and refuted claims to the contrary.

Exuberant leaders talked about curing AIDS by ridding the body of
H.I.V. Later, experiments showed that a cure remained beyond reach
because the virus found hiding places in the body to escape the drugs.

That year, as the treatments began to emerge, the United Nations
created its AIDS program. In the years since, its director, Dr. Piot,
has stressed that the political will of top world leaders is
necessary to turn the epidemic around.

At the Geneva conference in 1998, the first country-by-country
estimates of H.I.V. infections and AIDS deaths underscored the
devastating impact of the epidemic in the developing world.

And enthusiasm about promising reports of effective treatments was
dampened by the recognition of unexpected complications. In the case
of the drug cocktails, it was lipodystrophy, a side effect of
protease inhibitors that causes fat to disappear from some areas of
the body and redistribute in other areas, changing the body's shape
in peculiar ways.

The Durban meeting, in 2000, was the first international AIDS
conference held in a country with such widespread poverty. Speakers
directly attributed the magnitude of the epidemic to the failure to
advocate protective measure and to provide effective treatments to
vast populations in Africa and elsewhere.

A session was scheduled to announce what organizers thought would be
favorable research findings: that a spermicide, nonoxynol-9, could be
an effective microbicide against H.I.V. A microbicide, any substance
that kills germs, can be formulated as a cream, gel, film or
suppository. But the plenary session became a surprising
disappointment: the product had failed.

In Barcelona in 2002, Dr. Bernhard Schwartlander, a W.H.O.
epidemiologist, provided the outline of what has become the agency's
efforts to treat millions of people. Though the plan has failed to
meet its target, health officials say it has fundamentally changed
attitudes about what can be done in poor countries.

The last conference, in 2004, was held in Bangkok to focus attention
on AIDS in Asia. Yet the Thai government had to cancel a summit
meeting of 10 invited heads of state at the conference because only
President Yoweri Museveni of Uganda accepted.

This year in Toronto, to accommodate the disparate interests of the
24,000 participants, the sessions will cover a wide range of topics.
Over six days, the presenters are to deliver 4,500 reports --and
hundreds more in satellite meetings before and after the main event.

As in previous years, noisy protests are likely to punctuate the
conference, adding to a circuslike atmosphere and making it seem more
like a convention and social gathering than a scientific meeting.

The AIDS conferences are not intended to set agendas or to pass
resolutions -- like conferences on the environment, for example -- or
even to reach a consensus on how to fight the disease. A few major
advances have been announced at the international meetings over the
years, but most gains have been incremental, as is true for meetings
in other fields.

For these and other reasons, a number of leading scientists have
stopped attending, choosing to present their findings elsewhere. The
United States is paying for about 175 people -- government employees
and representatives of nongovernmental agencies -- to attend.

Some scientists continue to go wherever the conferences are held to
attend refresher courses, learn of new findings and listen to reports
from disciplines to which they are rarely exposed.

These scientists say they believe the activism and diversity of the
participants are critical to keeping AIDS in the news. Still, some
supporters complain that the quality of the scientific presentations
has declined at recent conferences.

Recognizing that criticism, Dr. Gayle, the president of the
international society, said that the organizers had focused on
strengthening the meeting's scientific component.

For journalists and participants, the conferences are challenging. A
participant can listen only to a small fraction of the presentations,
and at best has time to digest the material. All too often,
presentations that a participant wants to hear are scheduled a few
minutes apart in different areas of vast convention halls. Also, the
race between meeting rooms is often interrupted by chance encounters
with other participants who want to stop and talk.

The conferences have come to attract a wide array of institutional
sponsors and commercial exhibitors, who together are paying about
half the $20 million cost of the Toronto conference, about the amount
for similar meetings. The other half of the cost comes from
registration fees that range from $150 to $995, depending on the
participant's country. (Those from poor countries pay the least, and
some receive scholarships.)

Scientists have come far in the 25-year history of AIDS. Some
infected patients now need to take only one pill a day. Only a few
years ago, many regimens involved a dozen or so pills, taken several
times a day.

But scientists and political leaders still have much further to go.
In the decade since the drug cocktails were introduced, 20 million
people have become infected, underscoring that the need to build a
system to deliver effective health care is as urgent and essential a
need as lowering the cost of antiretroviral drugs.

That is why "Time to Deliver" is the theme for the Toronto
conference. So many lives -- and so much money -- is now at stake,
organizers say, that everyone involved in fighting the AIDS pandemic
must be held accountable.