Barcelona 2002 served up the usual: data, dish, despair -- and a few bright hopes
A cosmopolitan hub on Spain's Mediterranean coast, Barcelona is a city of glittering cafe-lined boulevards, chic women on Vespas and fat-walleted tourists devouring Picasso and Gaudi. It's also an ancient, slightly eerie burg of gothic turrets and gargoyles, winding stone streets and crumbling walls bearing anarchist graffiti. Dark things rumble just beneath its glossy compact of progress.
In that respect, not a bad place for the 14th International Conference on AIDS last July, where, bright intentions aside, there was certainly something for everyone to bitch about. Activists wailed against drug companies for producing a trade show, while scientists grumbled that advocacy issues had hijacked the research agenda. Latin Americans saw red because the event's Spanish venue promised to offer "their" epidemic equal time, but Africa and Asia would not yield. And by Day Four, the PWA attendees were railing at the conference itself, complaining that it consigned them to second-rate status.
But the still-meager Global Fund for AIDS, Tuberculosis and Malaria was the true trigger for debates. Poor nations, home to 95 percent of the world's HIVers, implored their rich neighbors to intervene, while the wealthy demanded accountability for their dollars. In fact, the schism between the North and South showed itself even before the summit's start, as immigrant-phobic Spanish consulates denied visas to delegates from the developing world.
For me, whose years of AIDS activism eventually led me to this pulsing event, Barcelona was a reunion of old friends and, more, a reality check: Would the global-access ruckus we'd raised in 2000 at the Durban conference finally bear fruit? But first, hazy from two hits of Klonopin on the red-eye from New York City, I registered at the labrynthine Fira de Barcelona and hightailed it to my hotel to crash.
SUNDAY: Friends Present and Passed
By morning I felt up to the task of sifting through the mountain of studies and presentations on everything from basic science and real-life treatment to prevention, policy and advocacy. As I mapped out my week, I left my itinerary open for anything that would make for juicy theater.
Outside, on the steps of the Fira, the Mediterranean sun burnished our collective excitement as we all greeted and gossiped with familiar faces from home or conferences past. Mercy Maklemele and Lungi Mazibuko, two HIV positive South African organizers I'd met two years earlier at Durban, embraced me with Zulu verve and healthy, glowing faces. As they told me about other folks I'd met in Durban who'd since died while the global battle for access to meds ensued, I said a silent prayer of thanks that these two had made it to Barcelona. These biannual meetings are nothing if not a marker of mortality, both a reassurance that some are beating the virus and a cold reminder that many more are not.
At dusk, a record 17,000 delegates filled the Palu Saint Jordi stadium for the opening ceremony. Spain's minister of health, Celia Villalobos, was greeted with a torrent of boos for her nation's 50 T-cell prerequisite for health benefits -- and the visa debacle. But it was Peter Piot, head of UNAIDS, who spelled out what would become one of the week's key themes: "I don't know a single place in the world where the real reason AIDS treatment is unavailable is that the health infrastructure has exhausted its capacity to deliver. It's knowledge that's the barrier. It's political will."
Sure enough, the "infrastructure" debate would weave itself into the conference daily, as economists, officials and ever-cautious researchers rationalized that giving HIV meds in resource-poor settings lacking essentials such as lab tests was worse than the "drugs into bodies now" approach favored by many activists -- and untreated HIVers. At a packed session on Monday, Pablo Cahn, MD, Argentina's top AIDS doc, would say, "A physician's first responsibility is to uphold the Hippocratic Oath, which says: 'Do no harm.' Which is worse -- to die of HIV or to die of toxicity due to lack of lab tests?" For most of the crowd at Barcelona, this was not a rhetorical question.
MONDAY: Promises, Protests, Press
The next morning found me bleary (from a trashy all-night gay-pride beach party) but wired (from three cappuccinos, compliments of Gilead) for plenary-speaker Milly Katana. This bold, smart Ugandan activist has risen through the AIDS ranks to become a Global Fund board member and unofficial poster woman for the confab with friends in high places -- and access to meds few of her countrywomen have. "Let us put the grass-roots at the center," Katana said. "There is no better-placed institution to move the knowledge into people's lives than the community groups."
Number of conference participants: 17,000 Number of daily new infections worldwide: 15,000 Number of countries represented at the conference: 124 Number of people with HIV worldwide: 40 million Percent who have access to HAART: 4 Percent of Africans with HIV who have access: .1 Cost of producing the conference: $14 million Number of condoms this would buy: 70 million Number of HIVers this would buy one year of HAART for (brand): 933 Number of HIVers this would buy one year of HAART for (generics) : 43,077 Amount Bill Clinton was paid for closing ceremony: $0 Cost of full-price registration: $950 Amount U.S. spends on one citizen with HIV in a year: $1,359 Cost of one HIV (ELISA) test: $1 Cost of one CD-4-cell test: $5 Cost of one viral-load test: $100 Cost of one dose of morphine: $0.49 Cost of "adequate" global treatment and prevention a year: $9.4 billion Number of lives this could save: 28 million Number of people who have died of AIDS worldwide: 24 million Number of AIDS deaths by 2020: 96 million Amount currently in Global AIDS Fund: $2.1 billion Amount U.S. is supposed to donate (using GNP as guide): $2.5 billion Amount U.S. has donated: $500 million Amount U.S. has budgeted for 2003 homeland security: $38 billion
Later, I wandered Big Pharma's expo hall, boasting display booths as large and lavish as shopping-mall food courts, complete with themed freebies -- Merck, say, handing out bottled water, a Crixivan-kidney-stones prevention. The NGO hall next door had a more casual atmosphere, where advocates could rest, plot, flirt, network, find sexy prevention posters in every language and gather for the odd performance -- such as the Thai sex worker who shot darts and flowers from her money-maker.
From there I checked out the media center, a Kafkaesque warren of computers and phones buzzing with reporters. In the eye of the storm, I wondered just what scientific breakthrough or new program the pressfolk were chasing and spinning back to their respective corners of the earth. As the daily press conference packaged pretty messages about USAID and vaccine initiatives, I tugged on the shirtsleeve of The Wall Street Journal's Mark Schoofs and asked what story he was filing. A piece on transgenders who get HIV from black-market silicone injections, the Pulitzer Prize-winner said.
The confab's first activist demo punched in at noon, complete with the obligatory TV cameras. In time-honored ACT UP fashion, the fearsome Paris chapter trashed pharmco Roche's exhibit booth for gouging prices on T-20, the confab's salvage-therapy starlet, soon to be on the market as Fuzeon -- the most expensive HIV med ever. Doing damage control, Roche insisted it had taken a risk by investing in a brand-new drug class.
That evening, an upset was plotted: At a scrappy community center a few metro stops away, I joined an assortment of rabble-rousers united under Health GAP, the umbrella for an international network of global-access groups. Polite as a Quaker meeting, reps from Nigeria, Zimbabwe, France and England bowed to U.S. activists hashing out the week's direct-action priorities. This is where the fracas that would capture the world's attention the next day grew from a sparkle in our eyes into a bona-fide plan.
TUESDAY: Tommy Takes His Lumps
By noon at the Global Fund session, packed with delegates and press, everything was in place. Those in-the-know sneakily passed out fliers and whistles. As U.S. Health and Human Services honcho Tommy Thompson took the podium, protesters launched a cacophony of chants and whistles, while others stormed the stage with signs that read "Wanted: Bush and Thompson for murder and neglect of PWAs!" Most in the room found the moment ripe to join in the protest of the Bush administration's abstinence-only domestic agenda and pound-foolish global policies. Veteran PWA Hank Wilson of San Francisco was livid, shouting at the top of his lungs, "The world needs to remember how we got access to treatment. We fought!"
Protected by a line of sullen bodyguards, Thompson stood steaming at the podium, his speech drowned out by the demo. Reading a transcript of it confirmed that Thompson and the White House are deaf to the urgency that rang through the conference. "The U.S. commitment has grown to $500 million -- far more than any other nation," it read. "No nation has ever made fighting HIV/AIDS as high a priority as the United States under this administration." But according to Global Funder Jeffrey Sachs, the U.S. needs to cough up $2.5 billion annually to meet the percentage of GNP required by each contributing nation.
At a post-demo press conference backstage, a visibly shaken Thompson justified U.S. donations with what is known as the accountability argument -- American dollars allotted specifically for programs to prevent mother-to-child transmission (MTCT) would be scaled up to include HIV treatment only after such programs had proved to work.
WEDNESDAY: The Sweet Smell of Success
Dogged by "conference fatigue" (overstimulation makes it hard to sleep at these events, even after the necessary nightcaps), I found myself the next day at a heated session that cut to the heart of the week's deliberations. A presentation of studies in African and Asian countries concluded that treatment costs outweighed benefits. Prevention gives more bang for the buck, the researchers argued, as evidenced by interventions in Uganda and Thailand, where infection trends had been reversed -- and where there was no risk that half-assed HAART would spawn a drug-resistant supervirus.
"What about the 40 million already infected?" the treatment-access camp shot back. Pointing to Brazil's lauded universal-treatment model, which proves cost-effective by preventing recurrent hospitalizations, the advocates argued that treating wasn't just the right thing, but the smart thing: Treatment is prevention, as transmission rates would plummet if the planet's HIVers all had undetectable viral loads. At the closing ceremony, South African icon Nelson Mandela would bless this camp when he pointedly said, "With the hope of treatment, people will have a reason to go for counseling and testing. This is the single-most important prevention tool we have."
Later that day, a small, sweet victory was announced. Columbia University's school of public health and a coalition of private foundations would commit $50 million for the first-ever prevention-plus-treatment program in the developing world. This so-called MTCT-Plus Initiative is intended to link to treatment more than 10,000 HIV positive women, who enroll originally to prevent transmission in childbirth; then their HIV positive family members will follow. Wafaa El-Sadr, MD, head of the HIV center at Harlem Hospital and MTCT-Plus champion, choked back tears as she said that every child had a right to be raised by a mother, every mother a right to see her child grow. And Beatrice Were, a Ugandan HIVer, said that she would finally test her two oldest children for HIV now that treatment was available.
That evening, at a champagne gala for MTCT-Plus in a choice hotel, I got to mingle with several of my heroes: the earthy Eric Goemaere of Doctors Without Borders, the Nobel Prize-winning group that has brought HIV treatment to remote parts of the world; saucy Glenda Gray in a red dress and James McIntyre, two maverick clinicians who work on MTCT prevention in Soweto; the regal El-Sadr; and chatty Alan Berkman, a former U.S. radical and political prisoner-turned-AIDS doc and Health Gap maven en route to do work in South Africa. Together, we all cheered MTCT-Plus as a place to start, a hard-won triumph, something to raise a glass to.
LAST DAYS: Access Has the Last Word
By Thursday, I was as wrung out from sleep deprivation, the 8 a.m. plenaries and nonstop info-netting as I was from a dour realization: If Durban 2000 had left us literally intoxicated with the feeling that the hearts and minds of the haves and have-nots were aligned in this global fight, then Barcelona was the hangover -- a sobering reckoning two years and six million deaths later [see "Barcelona's Index" above].
At that day's plenary, the temporary last word in the escalating debate on treatment access was had by drugs-into-bodies advocates. Their voices eclipsed the naysayers, the proponents of "infrastructure first." Renowned doc Paul Farmer, who pioneered an HIV clinic in Haiti, earned a standing ovation for proving that HIV can be treated successfully outside of sophisticated health-care settings. And University of Cape Town's Graca Machel thundered that the moral imperative to treat transcends cost-effectiveness: "On a continent with 28 million people living with HIV, there are only 30,000 people receiving [HIV meds]. How can we hear these figures and still be having discussions on patents and how not to lose money?"
These Robin Hoods won the day, but would they ultimately win the fight? At that same session, at least 10 former and current heads of state were in attendance -- not a bad showing until you counted the many more who were absent, starting with Thabo Mbeki, president of the nation hardest hit by this disease, and George W. Bush, president of the nation most equipped to help.
HEADING HOME: A Place to Start
On Friday afternoon, the closing ceremony's radiant candlelight vigil made for a moving moment -- to remember all those we'd lost in this 20-year battle and to meditate on planetary promises amassed over the previous week.
"You know as well as I that there are now cracks appearing in glaciers of indifference we thought would never melt." So said Bill Clinton, co-chair of the International AIDS Trust, at the closing ceremony, where his and Nelson Mandela's appearances guaranteed superstar coverage. But unmoved by his legendary charm as most others clearly were, I could only hear irony in his remarks, not least his mea culpa that he dropped the ball on federally funded needle exchange while in office. "I think I was wrong about that. I should have tried harder to do that," he told The New York Times the night before.
Since Durban, I reasoned, the Global Fund has been birthed, governments have signed on to the fight, Brazil and India have introduced cheap generic drugs, the World Health Organization has OK'd HAART guidelines for poor nations, and Big Pharma cut costs, even donated drugs for free, in the developing world. At Barcelona 2002 we heard hard pledges to an agenda that only two years before had seemed pie-in-the-sky: massive prevention and treatment efforts, billions of dollars from wealthy nations -- a public-health experiment of unprecedented scope. But will it be enough?
As I left Barcelona (for a weekend at the beach, no less!), the words of one local HIVer, Jerome Dorda, echoed in my mind [see "Take-Home Takes," below]. "You're very tired, fighting against the virus," he told me. "But each day you wake up and say, 'OK, now another day.'" He was speaking of his own health, but he was speaking of us all. So we count the days 'till Bangkok 2004, when worlds collide and converge again to measure the success of our actions.
Kent Bebsock, Albuquerque, New Mexico Positive since 1993 Advocate, Committee on Indigenous Health
"These conferences are incredible. But some sessions I've been to have been very Euro-dominated. But in one we introduced ourselves, which is what we always do in indigenous gatherings, and there was real dialogue.
Indigenous people around the world have some of the highest risk factors. The situation in southern Africa is going to appear in our communities if we don't start acting on it. The statistics on reservations in the U.S. and Canada are the same as in poor regions of Africa and Asia: STDs are very high; we lack clean water and electricity.
The activism that developed around AIDS from the beginning, starting with white gay men in the early 1980s, is a real model for the world on how social movements can take place."
Julian, Barcelona Positive Reporter, AIDS 2002 Today
"The conference is very good for someone like me. I'm meeting and talking to people who are positive from all over the world.
I want a simple commitment from everyone to respect human rights and lose their fear of people with HIV."
John Iversen, San Francisco Positive since 1986 Activist, ACT UP/East Bay, Health GAP
"We walked out of the opening ceremony. We were disgusted by it. It resembled the Academy Awards or an Olympics opening ceremony, whereas it should have been a lecture on what's lacking in terms of global AIDS.
The conference theme -- 'Knowledge and Commitment for Action' -- was all very nebulous. There was no set of demands. Even the WHO's demand to treat 3 million by 2005 would have been better than this slogan.
I don't think people from Western countries have a whole lot to complain about. We have treatments, and 92 percent of the world doesn't."
Vusokazi Elizabeth Sipika, Matatiele, South Africa HIV negative Artist, Dongwe African Crafts
"My last test was in 2000 -- still negative then. But when you are from a sub-Saharan country, you say, 'I am not positive yet' because you know it is very possible.
What do you think it does to an ordinary person to see people dying every day? To see a sister sent away from the hospital when they said, 'We cannot do anything more. Go and die.'"
Wojciech Tomczynski, Warsaw Positive since 1986 Activist, Polish Association of People Living With HIV/AIDS
"In Poland, we use commercial drugs, but naturally we could treat more people with generics. But Poland is now part of the European Community, making generics impossible. We are able, thanks to God and our government, to buy treatment for some 1,200 people out of 7,500 who are positive. But we are afraid -- this year it was difficult to obtain even that money.
The situation in the Ukraine and Russia is much worse, horrible. Belarus is a forgotten country, where only three people are on treatment. I came to this conference to hear if the pharmaceutical companies invented a good, cheap drug for us."
Ana Martin, Barcelona Positive since 1985
"My sister has AIDS, my brother already died, my niece, who's 11, has AIDS. Sometimes I think, 'If I were normal, my life would be different. I would have a family for sure, children.' But thanks to AIDS, I have met really good people who have helped me a lot and made me very happy."
Kate Thompson, London Positive since 1987 Staffer, Global Fund for AIDS
"I went on therapy five years ago, and I've had loads of problems with side effects -- but I'd rather be here moaning about the problems than be dead. In the last few years, a lot of us are starting to fail on treatment, but on the whole, I'm not going to half as many funerals as I used to. Whereas my friends in India and Africa are still dying at the same rates. This has to change."
Milly Katana, Kampala, Uganda Positive since 1995 Advocate, Health Rights Action Group
"If we are ever to arrive at a day when AIDS no longer strikes fear, looms large, casts a shadow over people's lives -- and beyond that, a day when its name is forgotten altogether, it will be because of the tireless work of the communities that have been there all along.
With all the scientific knowledge at our disposal, we should stop talking and walk the walk."
Jerome Dorda, Barcelona Positive since 1984 Punk musician
"The beginning of the epidemic was terrifying. My friends didn't know about their status, and then three weeks later they were in the hospital, and three weeks later, dead. I realized I just had to enjoy my life and make no plans for the future. It was 'Take what you can and forget about everything.'
Now I feel good, but I can't explain it: Deep inside your body, you're very tired, fighting the virus. Each day you wake up and say, 'OK, now another day.' But I live pretty well with my virus. We're friends. Once I decided I had to speak to the virus in order for him to understand. I said, 'Listen to me, if I die, you die, so let's get a balance.'"