Return of the Ribbon

It took a change in U.S. policy to bring the International AIDS Conference back to the United States for the first time since 1990.

What kind of meeting rates that level of influence? A big, loud, intensely participatory one.

You could interview everyone from the head of the local secretariat for the 19th International AIDS Conference (AIDS 2012) to the event director at the convention center to the show’s general contractor, to exhibitors and delegates and other participants, and they would all tell you about the threads of activism and passion and simple human emotion woven throughout the most famous quilt in the world.

But nothing could prepare you for the moment during AIDS 2012’s opening session when a woman and her daughter took the stage at the Walter E. Washington Convention Center in Washington, D.C. The mother’s name was Florence Uche Ignatius. She was 34 years old and from Nigeria, and had been HIV-positive for the last 14 years. Her daughter, Ebube Francais Taylor, was 13 and HIV-free. They were both at AIDS 2012 for the same reason: to say thank you, in person, to the people of the United States.

In that they were not alone. Florence and Ebube were introduced by Michel Sidibe, executive director of UNAIDS, who praised the United States for its “compassion, generosity, and solidarity” in battling AIDS around the world. When it was Florence’s turn to speak, she said: “I am alive today and on treatment because of you, the American people. You have helped so much. But believe me, millions are still out there, waiting for treatment. That is why we are here: to ask you not to stop.”

Ebube followed her mother. “Because of [Florence’s] love, because of the support of the American people, I was born HIV-free,” said Ebube, poised and beautiful, her mother smiling proudly just behind her. “So I say thank you, Mom, and thank you, American people, for your support. Ö [But] I want all children, all children, to be born just like me, free of HIV. Every single one. Please, I am begging: Let us make this world an AIDS-free generation.”

People wiped their eyes and looked at one another and shook their heads, and they applauded. The opening session continued for another hour. Then the meeting was declared open, and over the next five days, it became clear just how well Florence and Ebube had captured the heart of the profoundly human and humanizing International AIDS Conference.

The meeting hadn’t been held in the United States since 1990, during the depths of the plague years, and in an interview with Convene a few weeks before, Tiffany Gilliard, head of the local secretariat for AIDS 2012, had said: “It is my hope that people who aren’t talking about HIV and AIDS will start to talk about it again. The stigma will be erased to some degree because this conference [will have] been so widespread. The media will cover it from various angles, from human-interest stories to real science stories. I just hope people are talking about HIV and AIDS again, at the fevered pitch they were talking about it 20 years ago.”

Just by sharing their story, Florence and Ebube demonstrated why they must.

There is a very simple reason why the AIDS conference hadn’t met in the United States for 22 years: The International AIDS Society (IAS), which organizes the biannual meeting, had forbidden it. In 1987, the United States enacted a ban on HIV-positive foreign visitors, and five years later, IAS decided that the conference would no longer be held in any country with such a policy. The last International AIDS Conference held in the United States was in San Francisco in 1990, and while the last two decades have seen AIDS transformed from an unstoppable scourge to a somewhat manageable epidemic, at least in the developed world, it’s happened without the participation of the world’s most popular destination for international association meetings.

But in October 2009, the Obama administration overturned the ban on HIV-positive visitors, finishing a process begun a year earlier by the Bush administration, and barely a month later, it was announced that AIDS 2012 would be coming not just to the United States but to Washington, D.C., which in addition to being the nation’s capital claims its highest rate of HIV infection. “While the District of Columbia has many resources and is a beautiful tourism destination,” D.C. Mayor Vincent Gray said during the opening session, “it is also a city where HIV/AIDS has had a profound impact on the health of our citizens.”

In a few different ways, the selection of Washington, D.C., felt like things were coming full circle. Before signing on with the local secretariat for AIDS 2012, Gilliard was director of sales for Destination DC, where she worked on the bid that brought the show to Washington. “It wasn’t until the entry ban was lifted that we knew the U.S. could actually be a contender for this meeting,” she said. “Once we knew the U.S. was a contender, that is when we put a full-court press on to bring it to D.C. So for me, it is very personal, because I have seen it from a bid all the way through.”

Likewise, in an interview a few weeks before the conference, Gregory O’Dell, president and CEO of Events DC, which operates Walter E. Washington, was very aware of what AIDS 2012 meant for its host destination, at every level. “The other thing we’re mindful of is, not only is this the first time [in decades] for Washington, D.C., [which hosted the conference in 1987,] but for the United States to host this,” O’Dell said. “We’re representing the country as well, and it’s important to this organization.”

But what made AIDS 2012 truly historic had everything to do with its mission, which is to serve as “the premier gathering for those working in the field of HIV, as well as policy makers, persons living with HIV, and other individuals committed to ending the pandemic.” Ending the pandemic. This year, speaker after speaker talked about the viability of that very thing, preventing transmission, developing a vaccine, finding a cure. Scientists and activists alike are convinced that what seemed like a miracle 30 years ago is now within reach. “It is my profound hope,” IAS President and AIDS 2012 International Chair Elly Katabira, M.D., a professor of medicine at Uganda’s Makerere University College of Health Sciences, said during the opening session, “that this conference will send us on a path toward ending the epidemic and turning the tide.”

The pitch of this recurring message of hope varied depending on who was speaking at the opening session. A few minutes after Katabira’s remarks, Annah Sango took the stage. She was 24 and from Zimbabwe, and a member of the International Community of Women Living With HIV/AIDS. She registered optimism, but impatience and anger, too, wondering aloud why the global AIDS community comes together every two years only to ask the same questions. “Ask yourself,” she said to her audience, “why are women [in the developing world] still stigmatized in terms of resources? “Why do women living with HIV face forced sterilization? Ask yourself again, why are we still delaying basic sex education? ”  It is time to make waves. We need to look with new eyes at old problems.”

And that’s what makes the International AIDS Conference so different. Rigorously scientific at its core, Katabira estimated that 70 percent of the sessions at AIDS 2012 would discuss new research findings, the meeting serves an agenda shaped in large part by a vocal, hands-on, historically angry activist community that was responsible for dragging the issue into the light when the world was largely ignoring it. It’s their conference as much as it’s the scientists’, the patients’, the families’, and the aid workers’ conference.

So how do you put together a program that serves all of them?

“All of your shows, you learn something. But this of any show, if it’s coming to your city, if you don’t go see it [in advance], you don’t know what you’re expecting,” said James Smith, assistant director of convention management for Events DC, who along with Events DC Senior Vice President and General Manager Samuel Taylor attended AIDS 2010 in Vienna in preparation for working on AIDS 2012. “I don’t think I’ve ever been to an event that, from beginning to end, anyone involved with it is as passionate about what’s going on there. It’s acted out upon, it’s displayed, it’s talked about, in every way, shape, or form.”

That passion infused a sprawling show with a lot of moving parts. From July 22-27, AIDS 2012 drew nearly 24,000 participants from more than 180 countries, including more than 2,000 media professionals, working out of a 24-hour media center at Walter E. Washington, and 1,000 volunteers. One-hundred ninety-four sessions were organized along five tracks: basic science; clinical science; epidemiology and prevention science; social science, human rights, and political science; and implementation, health systems, and economics. There were big-name speeches, including opening-session remarks from World Bank President Jim Yong Kim, U.S. Secretary of Health and Human Services Kathleen Sebelius, and, appearing remotely, United Nations Secretary-General Ban Ki-moon; keynote addresses by Secretary of State Hillary Clinton, Sir Elton John, and former First Lady Laura Bush; symposium presentations by Sen. John Kerry, Bill Gates, and Whoopi Goldberg; and closing-session remarks from U.S. House Minority Leader Nancy Pelosi and former President Bill Clinton.

There was a 111,000-square-foot exhibit hall with 220 exhibitors and thousands of posters, with hundreds more posters displayed in hallways and rooms throughout the convention center, for a total of 3,844. A 128,000-square-foot Global Village, free and open to the general public, offered hundreds of education, cultural, advocacy, and networking programs, plus 116 nongovernmental and marketplace booths. At the Positive Lounge, a private, elegantly decorated suite of meeting rooms, HIV-positive attendees could store their medication, have something to eat, and relax and refresh themselves.

More than 90 affiliated meetings, workshops, and other events took place throughout the city, from a performance of Larry Kramer’s play “The Normal Heart” at Arena Stage, to the 2012 Gay Men’s Health Summit at George Washington University, to a session for the Global Health Service Partnership at Peace Corps headquarters, to a display of segments of the AIDS Memorial Quilt on the National Mall. And 75-plus conference hubs around the world presented broadcasts from AIDS 2012 along with original on-site programming; they included a hub for sex workers in Chennai, India, and one for intravenous drug users in Kiev, Ukraine.

Then, inside and outside the convention center, there were the protests and performances, ridiculing politicians, questioning pharmaceutical funding, and, especially this year, demanding that sex workers and drug users also be included under the conference’s umbrella, even though the lifting of the U.S. ban on HIV-positive visitors doesn’t apply to them. The protesters were there because they were allowed to be; they were official delegates who could participate in the entire conference, and who served as a constant reminder of the early years of the AIDS crisis, when groups like ACT UP made the epidemic an international priority.

“Anyone demonstrating with the conference is asked to sign a form that speaks to, they have their right to communicate but not to disrupt or disturb people who are attending the conference to learn more about science or hear a specific speaker,” Gilliard said. “They have their moment, and then we get started with the program.” That’s not typically how meeting professionals approach political demonstrations. “Most of the time if you are having an event and someone is protesting,” Smith said, “your show management wants you to get him out. [But] these are paying delegates that are protesting. If you’re the minister of health from South Africa and I don’t like your stance, I am going to protest your event.”

That inclusiveness is one of the reasons why previewing the event in Vienna two years ago was crucial. At AIDS 2010, Smith saw firsthand how IAS’s two longtime security consultants, both with “federal and city police-force backgrounds,” he said, work directly with activists, talking to them in advance of the conference about what the host destination will and won’t permit in the way of protest activities. In Vienna, for example, protesters climbed a subway station adjacent to the Messe Wien Exhibition & Congress Center and unfurled a banner. “When I saw that,” Smith said, “I was like, D.C. in July, that’s going to get ugly quick.'”

Events DC started working with the conference’s security team almost immediately after AIDS 2010, but still, Smith wasn’t expecting protesters to be threatening or dangerous in any way. “You may get a five-minute warning that a new protest is going to happen,” he said, “but their protests or their rallies aren’t what we would consider violent. They are not aggressive. They are a thousand people getting together, unfurling a 30-foot banner, and chanting, and you give them their 10-minute say and they’re done. They disperse and they go to the next session.”

Gilliard also found that, for such a global show, the AIDS conference has deep local roots, reaching out to nonprofit, civic, educational, and government organizations in its host city. “I didn’t come from working in HIV and AIDS, I came from a convention background,” Gilliard said. “My experience coming to the table was, I knew how to work with local municipalities and I knew how to build a convention. But then add the community part to it and it has been just incredible to see their response and their impact on the conference and on the program.”

The city itself reciprocated that level of attention and interest, hanging banners from light posts and putting signage on buses all around the city. And in March 2011, Mayor Gray formed a Mayor’s Host Committee just for AIDS 2012 whose members included former Mayor Sharon Pratt and Destination DC President and CEO Elliott Ferguson. Gilliard said: “It is the first time I have ever known of D.C. administration having a host committee dedicated to a conference.”

An hour and a half before AIDS 2012 officially opened on Sunday, July 22, there was a sense of pent-up demand in the lobby of Walter E. Washington. At 5:30 p.m., thousands of attendees queued up by the main staircase and escalators, waiting to proceed upstairs to Session Room 1. Once the velvet ropes dropped, volunteers in bright yellow shirts began scanning badges, and it wasn’t long before the line was moving onward and upward.

The conference assumed its unique personality almost immediately. At the top of the escalators, in the soaring foyer outside the AIDS 2012 exhibit hall, there was a low black stage in the process of being set for UNAIDS’s CONDOMIZE! campaign, featuring dozens of inflated male and female condoms of every size and color. Around the corner, in the hallway leading to Session Room 1, several pieces from MAKE ART/STOP AIDS were on display, including Orphan Tower, a structure made of 634 beaded-cloth dolls representing the 634 young children orphaned by AIDS in the rural South African village of Dannhauser; and Keiskamma After Guernica, a tapestry that uses Pablo Picasso’s famous Guernica painting as inspiration to show “the devastation caused by HIV and AIDS among the citizens of Hamburg,” another village in South Africa, where the Keiskamma River empties into the Indian Ocean.

Just past MAKE ART/STOP AIDS, three trim men in white T-shirts from AIDES, a French HIV/ AIDS organization, were wearing Barack Obama masks and handing out flyers that said: “Politicians have the power to stop AIDS. It’s a matter of funding and political will. By making prevention and treatment widely available, we can wipe out the epidemic.”

The opening session was scheduled to begin at 7 p.m., but by 6:30, Session Room 1, set for 7,000 people, with squares from the AIDS quilt draped along the walls, was topped out, and attendees were being directed to overflow viewing areas in several other rooms. It was a bewildering introduction to the event, a carnival of science and culture and sex and politics and people, so many people, who cared enough to spend their Sunday night at the International AIDS Conference.

The next afternoon, the exhibit hall offered a similar pageant, humanitarian and business endeavors jumbled together in a solid, built-out environment. In this pop-up city of industry, bigbox exhibitors loomed large at the entrance and paraded down the center of the show floor, with pharmaceutical and medical companies like Alere and Bristol-Myers Squibb and BD and Mylan giving way to equally formidable booths from the U.S. National Institutes of Health and UNAIDS. They were surrounded by a dense grid of smaller-scale exhibitions, from the American Fertility Association and the Red Ribbon International Film Festival to the Papua Provincial AIDS Commission and the 11th International Congress on Drug Therapy in HIV Infection.

“This is one of the larger shows we’ve done as far as requirements for graphics,” said Tim McGill, CEO of Hargrove, AIDS 2012’s general services contractor. “There’s in the neighborhood of 20,000-plus square feet of graphics generated by us just for the areas that we’re involved in. There was over three miles of hardwall, which is unusual here in the United States. That’s more typical in Europe and Asia. It’s definitely an international driven event, so it has the look and feel of the international scene, very little pipe and drape. All of the exhibit area is hardwall. All of the meeting rooms are done in hardwall rather than pipe and drape.”

The exhibit hall had only been open for a few hours when a protest rolled in, a line of blackshirted activists marching toward Canada’s booth at the front third of the hall and chanting, “We say fight back! Harper denies evidence!” They wrapped the booth in yellow crime-scene tape that said, “HARPER GOVERNMENT: EVIDENCE FREE ZONE!” and unrolled a black banner: “HARPER = DEATH.” The group turned out to be AIDS Action Now!, a Canada-based organization that was taking issue with what seemed to be the entirety of Canadian Prime Minister Stephen Harper’s HIV/AIDS policies.

The Canada booth was empty when the protest happened, and within 15 minutes, the activists had handed out flyers, posed for photos, answered questions, and went on their way. Not long after that, the crime-scene tape was gone and the booth was fully staffed, and the small fraction of the show floor that had turned its attention to the scene went about its business.

And business was a big part of AIDS 2012. A few days after the Canada protest, at the Alere booth, Paul Hempel explained why it was important for his company, the Waltham, Mass.-headquartered manufacturer of diagnostic equipment, including several advanced blood tests for HIV, to participate in AIDS 2012. “We need to be seen as, and I believe we are, a leader in the field of testing,” said Hempel, Alere’s senior vice president for ethics and compliance as well as special counsel. “And there isn’t a better show than this one. You don’t just have scientists here.” Alere was also using the conference to go wide with its Make (+) More Positive initiative, which Hempel called “our first foray into CSR.” Picking up on the spirit of hope permeating AIDS 2012, the company invited visitors to its sleek, white, Apple Store-chic booth to use crayons and paper to draw their own symbol of optimism; each one would count toward a free HIV screening for a person in need. “We’re trying to get people to rethink what being positive means,” Hempel said, adding: “How do you reduce stigma in the community? Because it’s very clear that it goes: decrease in stigma, increase in testing; increase in testing, increase in treatment; increase in treatment, decrease in transmission.”

Two floors down, the Global Village was a completely different scene. The atmosphere was less corporate and more earthy; in places it was almost funky. “Upstairs we have got all of the science, all of the abstracts, all of the workshops that will be presented, and downstairs we have the Global Village,” Gilliard said. “We really do have two very different conferences that will happen.”

On Monday afternoon, the very different conference downstairs found Yaa Simpson, a Chicago based community epidemiologist, presenting “Culturally Competent Tools & Strategies to Accurately Capture the Reality of HIV Among non- U.S.-Born Blacks/Africans Living in the U.S.” in the Black Diaspora Networking Zone. Simpson’s slides included graphic photos of female-circumcision procedures, but she had no problem holding the attention of the dozens of people in her audience.

Not far away was the Sex Workers Networking Zone (theme: “Rocking the Boat”), which seemed to be responsible for the stark black posters hanging throughout the Global Village that said: “No Drug Users? No Sex Workers? No Internat’l AIDS Conference.” Past that, a row of booths dead-ended at the Community Dialogue Space, a large, theater-style area with a hundred or so chairs arranged in a semi-circle and facing a stage; the topic being discussed was “Getting It Right: Ensuring a Human Rights Approach to Global Fund Programmes.”

In another corner, the Global Village Screening Room was playing “Positive Children,” a 40-minute documentary about HIV-positive children and their parents in Ukraine, which was followed by “Scenarios From Africa,” a series of short films about “particularly sensitive subjects related to HIV.” Nearby, the Community & Science Speak Networking Zone echoed the message of the opening session with a presentation called simply “The Cure,” with David Evans, director of research advocacy for Project Inform, and Steven Deeks, M.D., who co-chairs IAS’s International Working Group for its new “Towards an HIV Cure” global scientific strategy.

And back toward the Community Dialogue Space sat the HIV Story Project, a San Francisco- based nonprofit program that had set up a storytelling booth modeled after a classic photo booth. Attendees were invited to step into the windowless, soundproofed booth, look into a camera, and share their story of living with HIV/AIDS, which eventually will be posted online. “I wanted to move the quilt concept into interactive media,” said Marc Smolowitz, the project’s executive producer. “People have very powerful experiences inside the booth. They share things. Ö It speaks a lot to the power of personal storytelling.”

It also spoke to the power of AIDS 2012. “This is the go-to gathering,” Smolowitz said. “If you’re in the space of HIV/AIDS, you have to be here. Ö People need to come together and share ideas and get things done. This is a chance for us to all meet each other. It’s no small effort to come here, but we’ve learned a ton.”

“Upstairs, Downstairs” configuration notwithstanding, the International AIDS Conference is all about bringing together different people from different worlds. It’s part of the show’s DNA, and it makes for an experience that is not easily categorized.

What kind of meeting is it, for example, when you stumble across a few hundred people standing, crouching, and sitting in the middle of a hallway, watching a PowerPoint presentation on a large flat-screen monitor? It was Monday afternoon, and they were the overflow crowd from a session called “Immunopathogenesis and Its Treatment.” There seemed to be as many advocates and aid workers as medical professionals in the crowd, but no one was in a hurry to stop looking at slides with headings like “Ki67 Staining as a Marker for Cellular Activation” and “Activation Status in Lymph Node: USA vs. Uganda.”

Or how about the Q&A session that followed “Creative Strategies for Provision of and Increasing Access to Services for PLHIV”, that’s “people living with HIV”, on Wednesday morning. First, Keith Martin, a physician and former Canadian minister of parliament, asked panelists if they were working on issuing a strong statement about the need to liberalize international drug laws, fund needle-exchange programs, and otherwise provide for at-risk populations. Martin was followed by a man from Detroit who identified himself as a “recovering addict” and a “recovering sex worker,” who wanted to know how the panelists’ countries “embrace” people like him.

Those two experiences came close to capturing the atmosphere of AIDS 2012. It was a medical conference where the amateurs were just as interested in the hard science as the professionals, and also a public forum where anyone could ask the world’s leading experts on HIV/AIDS anything they wanted. It made for a kind of happening in which the format of the meeting merged with its function, and caused the people working behind the scenes to sound a lot like their attendees.

“Thirty years into the epidemic, 2011 marked 30 years, people are still dying,” Gilliard said. “And although there have certainly been a lot of advancements, we don’t want to take the spotlight off that. People are still dying from HIV and AIDS, and so you have to reinvigorate the fight. Thirty years ago, people were talking about HIV and AIDS, and then people thought, oh, you can take a [drug] cocktail and it goes away.

“People don’t think that people still have it. They don’t think that it exists. Hopefully, the message will come back to the forefront that this is still very real. We are still at the height of the epidemic, and we are just at a point where we can see the end, but it is going to take the work of the community to continue working with policymakers, and policymakers to continue funding, so that we can continue with scientific advancements.”

“I Have Been Forever Changed by This’

Tiffany Gilliard, head of the local secretariat for AIDS 2012, was part of the team at Destination DC that brought the conference to the nation’s capital. Here she talks about what it was like to move from salesperson to client for the same event.

The interesting process was, I courted them and said, “This is what D.C. can do.” And as they confirmed us and they started their planning, the conference director in Geneva and I had some very real conversations about what it would take for a person to be head of their local office. I’m a meeting planner, so I immediately thought, you need a meeting planner, when you really don’t just need a meeting planner, you need someone who from an administrative perspective knows how to run an office and knows how to pull a staff together.

It did help that I had some meetings experience from working in the industry for 17 years and working with meeting planners, because when it came time to go back to the convention center to renegotiate things that I had already promised [during her time at Destination DC], I knew what could happen or couldn’t happen. I’m cashing my own checks. I went from working for Elliott [Ferguson, president and CEO of Destination DC,] to calling Elliott going, “So remember we said?”

My job ends Dec. 31, 2012. After the conference is done, we have to wrap up, so most of our staff ends in August. Myself and our executive assistant will stay on until the end of the year. And then I will interview [for a new job].

Personally, I have been forever changed by this. I always thought of myself as a servant-leader, and I hope that my next opportunity still allows me to give back. Someone told me when I first started this job it would be really tough, but on the toughest days remember that you are doing God’s work because you are giving something back. People who come to this conference either live with HIV or have been impacted by HIV, and they will learn something more. So I hope that whatever I do next is something that benefits somebody.

Sidebar: Basic Training

HIV is a sensitive issue, politically, culturally, and personally, and Washington, D.C.’s meetings and hospitality community was well aware of that when it committed to hosting the 19th International AIDS Conference. At every level, training for the industry professionals who would be working with and waiting on attendees and other participants throughout the city was a priority.

The local secretariat for AIDS 2012, headed up by Tiffany Gilliard, distributed a series of English- and Spanish-language documents in June and July to every hotel and restaurant in the city, as well as to staff at the Walter E. Washington Convention Center. In June, the materials included frequently asked questions about “HIV/AIDS at Work and in Our Lives,” “Top 5 Things You Need to Know When Talking With Kids About HIV/ AIDS,” and information about National HIV Testing Day, which was June 27. In July, more basic information about HIV/AIDS and the conference was disseminated, along with five hypothetical scenarios that shift managers were encouraged to go through with their staff each day for a week.

“There will be 20,000 delegates from 200 countries visiting DC,” the AIDS 2012 office wrote when it sent out the July documents. “Many will be living with HIV, helping employees understand the basics about HIV is vital to their ability to service all guests.”

Events DC, which runs the convention center, presented mandatory training for all of its employees, culminating in an all-staff meeting the week before the conference opened. “I don’t like to refer to this as sensitivity training,” said James Smith, assistant director of convention management for Events DC, “but I think most people understand if you use that term.

“All of the attendees aren’t [HIV-]positive and haven’t developed AIDS, but they’re all sensitive to terminology. You don’t ‘get’ AIDS. You don’t ‘catch’ AIDS. You have the HIV virus that then weakens your immune system and takes you into AIDS. It’s that kind of conversation that you have with your staff. Something as basic as a word choice could make the difference with someone feeling comfortable or not feeling comfortable.”

More Resources

For more information about the 19th International AIDS Conference, visit aids2012.org.

Watch webcasts from AIDS 2012, including plenary sessions, press conferences, and other programming.

Christopher Durso

Christopher Durso formerly was executive editor of Convene.