The Buzz From Barcelona: Canadian Impressions of The XIV International AIDS Conference
August 26, 2002
After returning from The XIV International AIDS Conference in Barcelona, CATIE filled you in on the treatment news you've come to expect and count on (in CATIE News and Treatment Update 129). However, science was just one aspect of this conference which encompassed a broad range of issues relevant to people with HIV/AIDS (PHAs) and those who work with and care for them. Other tracks included epidemiology, prevention, social sciences, and advocacy and policy.
Because we feel it is important to share with you some of these broader issues from the conference that relate to treatment, this is not your usual CATIE News story. For this report, we sought to bring you something a little different: new voices, points of view, perspectives. CATIE contacted a bunch of Canadian PHAs, advocates/activists and community workers who also attended the conference and asked them the following questions:
Here we present their thoughtful and colourful responses. We hope you enjoy them.
Louise Binder, Chair, CTAC (Canadian Treatment Action Council) www.ctac.ca
Highlights: I don't have anything inspirational to say about the conference, really. I tend to think of "highlights" as good and I found the conference to be very depressing overall. The numbers of infected people and orphans is just desperate. There is no end in sight, as there appears to be no will among the rich to provide the resources necessary to stem the tide. It is also becoming abundantly clear that women are making up a majority of the cases. We know that women's health is always low on the health and public and social policy agenda, so this will only exacerbate the problem. It will also mean another generation with no one to bring them up, to teach them, to nourish their bodies and souls. Can we really survive as a species in these circumstances?
I guess the fact that almost everyone involved, from researchers to activists, is talking about this epidemic in political terms, whatever their discipline, is a highlight. The fact that many, if not all, stakeholders recognize the inextricable link between prevention and treatment is a step forward. The best speech I heard was from [former Canadian prime minister] Kim Campbell as part of the leaders' forum. She was very clear that until we give equality to women we will not deal with this epidemic effectively. It was good to see a number of political leaders and former leaders from several countries come to speak at that forum. Unfortunately, we didn't see all the ones we need to really show leadership and make a difference.
Treatment buzz: As for treatments, the buzz was around microbicides, treatment vaccine and prevention vaccine. For the first time, I heard researchers who were previously very skeptical say they felt that we were finally on the right track in each of these areas in terms of the types of research being conducted. This was heartening (maybe it is my highlight).
T-20 and tenofovir continue to be holding up in research data, but now there is some talk that T-20 will be expensive and in short supply, and there is some concern about the number of cases of renal [kidney] failure with tenofovir.
Evan Collins, M.D., F.R.C.P.C., Chair, AIDS Committee of Toronto (ACT) www.actoronto.org, Former Board Member, CATIE
Highlights: Maybe I am a starf***er at heart, but honestly the highlight for me was seeing Nelson Mandela and Bill Clinton speak. Mandela because he is one of the most important and admirable men of our time; and Clinton because no matter what you think about Slick Willie, he is a great communicator who really knows how to speak to an audience.
None of it is earth-shatteringly new, but work limps along.
Deirdre Maclean, Freelance Writer/Researcher, Former Senior Writer, CATIE
Highlights: For me, the highlight was the series of reports about the successful use of HAART in the developing world. For the past several years, we've heard from governments, pharmaceuticals and activists in wealthier nations that HAART cannot possibly be made available in places where inadequate housing, poor diet and unreliable drinking water are more pressing concerns. There were multiple reports from Asia and Africa of pilot projects of triple- drug therapy succeeding in small groups. And doing so in the same way we judge success in the developed world: maintenance of viral load below 50 copies and dramatic increases in CD4 cells. The true success of these programs was their gift of recovered health: Repeatedly, we heard stories of how treated people were once again able to work and to care for their families, to regain their dignity and their standing in the community.
Treatment buzz: Mmmmm ... didn't really catch much of a buzz about anything in particular. However, I did get really excited about the topical therapeutic vaccine DermaVir. It's an unlikely immune booster: a modified form of HIV that has had the integrase enzyme removed is rubbed into the skin. Results from monkey studies were mind-blowing and human trials are expected to start enrolling in the United States by the end of the year. If this vaccine works as well in humans when combined with STIs [structured treatment interruptions], then we may have the means to allow the body to control HIV without decades of drugs.
Enrico Mandarino, Ontario Representative and Board Member, CTAC
Highlights: A session entitled "Keeping AIDS At The Top Of The Agenda: A Strategic Dialogue Among World Leaders." As someone with a strong history in AIDS activism, it was an incomparable experience to sit three rows before 14 world leaders (including former Canadian Prime Minister Kim Campbell; India's former Prime Minister, I.K. Gujral; Ali Hassan Mwinyi, the former Prime Minister of Tanzania; the Prime Minister of St. Kitts, Dr. Denzil Douglas; former U.S. President Bill Clinton; and former South African Prime Minister Nelson Mandela) coming together to discuss a global commitment in the fight against AIDS. This was the first time that so many world leaders joined together and agreed that access to treatments is paramount to winning the fight. Each leader concurred that this cannot be done by a single country or source alone. Leadership at a global and country level, in a framework whereby politicians are accountable, was named as the single most important factor in reversing the epidemic.
Shari Margolese, National Women's Representative, CTAC
Highlights: Of course I was impressed by speeches by various world leaders in politics, science and community, but for me the highlight of the conference was very personal. I had the phenomenal honour of facilitating a skills building workshop. My workshop, entitled "Telling Your Story: How to Decide," attracted over 50 individuals from almost as many countries. I was humbled by the wealth of experience in the room. The participants ranged in age from 21 to over 60 with varied backgrounds, including many national PHA leaders and government officials. Interestingly enough, the most common reason that people chose to attend this workshop was to learn information they could use to help others become involved so that they could take a break. Sound familiar? By the end of the session, we all agreed that after more than 20 years of HIV, very little has changed to reduce the stigma and discrimination, and that a handful of people continue to represent the many faceless people living with HIV around the globe. It was truly a highlight to share a few hours with many of the people who form that handful.
Treatment buzz: I had hoped to follow a treatment and treatment access track that would primarily be concerned with women's issues. Fortunately, I also had other interests because there was very little new to see. Granted there were a few studies that looked at gender differences in treatments, but the numbers of women included in most studies were inadequate for women with HIV to draw any real conclusions for informed treatment choices. Unless, of course, you are pregnant, then there is lots of information about how to prevent transmission. The other huge gap I found in the treatment track was in pediatrics. As usual, there was a fair amount of anecdotal information floating around if you knew where to find it but very little hard science. I would put a challenge to the research community to look at the HIV positive population and see that women and children now represent more than half of those infected worldwide and to ensure that they are equally represented in research. Let's face it, the drugs can be safe and efficient but if they can't be accessed they are of little or no use to the majority of women and children with HIV in the world.
Craig McClure, Director, Health Hounds Inc.
Highlights: I would say that overall this was not a conference of "revelations." It was one of the "in-between" conferences, in terms of major announcements, discoveries, achievements, etc.
Having said that, this was the first conference where advances in treatment access for the developing world could be said to be "proceeding." Although the numbers of people accessing treatment are still painfully small, I was impressed with the speed of developments at the Global Fund since its formation less than a year ago. In addition, WHO [the World Health Organization] has firmly committed to assuring that 3 million people in the developing world are on treatment by the year 2005, which will be a huge achievement (assuming they will meet their own goals). Finally, it appears that the world's leading international organizations -- WHO, UNAIDS and the Global Fund -- are going to get it together on treatment access.
Stephanie Nixon, HIV Physiotherapist, University of Toronto, Department of Public Health Sciences
Highlights: My highlight had to be the "Putting Third First" satellite session presented by the Canadian HIV/AIDS Legal Network, the Lawyer's Collective HIV/AIDS Unit in India and the AIDS Law Project in South Africa.
The opening plenary presented by Justice Edwin Cameron [of South Africa] set the stage for me for the entire conference when he posed the question of how each of us in the audience was going to make sure that the cost of us being here is worth it. That is, the expense for each of us to attend the conference equates to x months of lifesaving HAART for someone living with HIV, and how are we going to make sure this trade-off is worth it. It was a crushing question, but put things into perspective right away.
Then, a few minutes later, Mark Heywood, from the AIDS Law Project and Treatment Action Campaign (TAC), received a cell phone call from Zackie Achmat (South African treatment activism superhero), telling him about the incredibly positive outcome of TAC's lawsuit against the South Africa government regarding access to nevirapine for MTCT [mother-to-child transmission] which had just come in. Heywood reported the news instantly to the room and there was a huge celebration.
Then, Paul Gully from Health Canada announced that Canada would develop an HIV vaccine strategy, which is the first that I believe anyone had heard of this (and that was all by 10 a.m.!). Anyhow, it was a really incredible way to start off the conference.
Chantale Perron, Director, Journal Pusher D'Infos, Coordination Assistant, Québec National HIV Mentorship Program www.cmeonhiv.com
Here are some of my impressions of AIDS 2002 in Barcelona.
General news about HIV/AIDS from the conference:
Isabelle Raymond, Info-Treatment Counsellor, CPAVIH (Comité des Personnes Atteintes du VIH du Québec) www.cpavih.qc.ca, CATIE Board Member
Ron Rosenes, Board Member, CTAC and Sherbourne Health Centre, Former Chair, ACT
Highlights: The personal highlight of the conference for me was finding out that an article that I had written on yogic nasal cleansing for [BCPWA's March/April 2002] Living + and sent to a community colleague in Barcelona had been translated into Spanish and published in a local community magazine, complete with a disgusting picture of me using a neti pot to rinse my nose.
Another highlight was the booing of the Spanish Minister of Health and the U.S. Secretary of Health and Human Services Tommy Thompson. Perhaps it is time to get angry again to create the political will and leadership to tackle the global epidemic.
Treatment buzz: From my perspective, the most interesting treatment buzz was around the potential for a vaccine that may have both preventive and therapeutic potential. I was fascinated to hear about a vision for treatment, perhaps in five years, that might include an immunological boost provided by a therapeutic vaccine. This was accompanied at the conference by a growing disappointment with the promise of virology to eradicate HIV using today's therapies. While there is promise for drugs that target novel enzymes like integrase, the blush is really off the rose when it comes to the ability of currently available combination therapies to rid the body of virus.
In the short-term ("waiting for vaccines"), I would say the treatment buzz is toward simplification of therapy, using nukes and NNRTIs [non-nukes] when possible to reduce pill burden, toxicities and the effects of lipodystrophy. I heard that in his session, Dr. Robert Gallo predicted that protease inhibitors were going the way of the dodo.
Karttik Shah, Vice President, Hemophilia Ontario www.hemophilia.on.ca
Highlights: The conference in Barcelona provided a great venue to network among peers and associates. Meeting with various PHAs and professionals in the field from nation to nation was a personal highlight. I am always interested in hearing a personal story or experience of a PHA living in a developing nation. The many stories I heard were inspiring, emotional and provocative. I feel that as progressive as Canada is there is always much to be learned from all global counterparts, especially European nations. The sheer networking and learning experience at the conference was very much a privilege and a highlight for me.
Treatment buzz: I was happy to see that within all the treatment information there were sessions on HIV and hepatitis C co-infection. Hepatitis C currently affects 30% of Canadian PHAs. As a representative from Hemophilia Ontario (the Ontario Chapter of the Canadian Hemophilia Society), I know that HIV and hep C co-infection is a very important concern for many people living with hemophilia. All HIV positive hemophiliacs are co-infected with hepatitis C, therefore, research into the management of both viral infections is key to preventing premature morbidity and mortality among co-infected PHAs. It is well known that both HIV and hepatitis C accelerate disease manifestation. The issues surrounding liver transplantation among co-infected PHAs is now coming to light and the positive results regarding co-infection treatment are both exciting and uplifting.
This article was provided by Canadian AIDS Treatment Information Exchange. Visit CATIE's Web site to find out more about their activities, publications and services.