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:

• What were the highlights of the AIDS conference for you?

• What, in your opinion, was the treatment buzz?

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.

Treatment buzz:

• Number one was the issue of treatment access to the developing world.

• Number two was the work on therapeutic vaccines.

• Number three was the growing recognition of cardiovascular disease as a side effect of antiretrovirals.

• Number four was T-20.

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.

Treatment buzz:

• New classes of drugs, such as fusion inhibitors, which block HIV's capacity to insert its genes into a normal cells DNA.

• There were many scientific sessions on vaccines and large-scale human trials on preventative vaccines will begin in Thailand on 16,000 subjects, with hopes to have a vaccine within three years.

• There was also lots of talk about easier dosing for existing medications.

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.

Treatment buzz:

• Vaccines (preventive and therapeutic): Although still early days, I would say that, based on information presented at the conference, we can expect important results in the next two years: VaxGen AIDSVAX Phase III (likely to be disappointing, but who knows), and Phase II Merck Adeno and DNA, IAVI MVA/DNA.

  I was excited about the late-breaker presentation on DermaVir (Liesciewicz and colleagues). This therapeutic DNA vaccine (HIV with integrase removed) is delivered topically and had extremely impressive monkey data. I have been following this product since it was first presented at a vaccines meeting in Puerto Rico in 2001. I'm happy to hear it is moving into Phase I human trials. Dermavir specifically targets Langherhans cells and is directly taken up by the lymph nodes.

• Antiretrovirals: Nothing really. Impressive three-year Kaletra data. Two new integrase inhibitors that might actually work (for a change) and don't seem to cause serious side effects. Fusion inhibitors, well, they chug along, I suppose.

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.

Treatment buzz:

1. The final death of the notion that prevention and treatment are mutually exclusive. A note, however, that although this idea has now been publicly denounced in theory, it will be another thing to overcome this dichotomy in practice. Furthermore, debates continue to flare around recent cost-benefit analyses concluding that prevention is a better bargain than treatment (see Creese et al, and Marseille et al).

   This idea -- that prevention and treatment are interdependent and mutually reinforcing -- was also embraced in the "Putting Third First" satellite by bringing together treatment advocates with vaccine advocates to explore the areas of overlap and linkage between the two movements, finishing with consensus that we will all do better to unite and learn from each other.

2. I suppose the biggest "treatment buzz" is that the world now has effective treatments available at a price which can be met to get treatments to all in need, and that the barrier is rich countries coughing up their portions of the bill. I thought that [Head of the Global Fund to Fight AIDS, Tuberculosis and Malaria] Richard Feachem's speech was outstanding regarding the Global Fund and its role in treatment. And [Chairman of the WHO's Commission on Macroeconomics and Health] Jeffrey Sachs was downright evangelical in his plea for rich countries (and the U.S. in particular) to wake up and respond to a very reasonable request. I also liked the idea of coming up with actual costs of what's required, then giving each of the countries their bills.

   If I had to choose the one overarching message from the conference, it would definitely be the call for rich countries to ante up in order to start scaling up treatment along the lines of UNAIDS' goal of delivering HAART to 3 million people in developing countries in the next three years.

3. Lastly is the issue of infrastructure, and how lack of it is not a sufficient justification for postponing delivery of antiretrovirals. The piece of research that I presented for/with ICASO [International Council of AIDS Services Organizations] spoke to this exact issue. The final report is called "Adding Infrastructure to the Advocacy Agenda" and is a primary research study of people living in developing countries who have been able to access antiretrovirals. The analysis develops a new model of "infrastructure" which we think will be more useful for treatment advocacy. It's available on the ICASO Web site at www.icaso.org.

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:

• The epidemic is far from over and far from under control in the world!

  The international statistics touched me a great deal:

  In the world, 40 million people are HIV positive! 5 million of those 40 million were infected in 2001!! Each day, 8,500 people die in the world from AIDS, while another 14,000 become HIV positive.

  Statistics were also released about several countries, including China, India, several former Soviet republics and Eastern European countries that have denied that AIDS is affecting their populations. The numbers are far from encouraging! According to some, the countries of Central and Eastern Europe are experiencing the most rapid increase in HIV cases in the history of the epidemic.

• Treatment access is a huge problem!

  Only about 30,000 of the 28.5 million people living with HIV in Africa have access to treatments!! By comparison, approximately 500,000 of the 900,000 PHAs living in North America have access to treatment.

• People are angry and are demonstrating against injustice!

  I was pleased to see people reacting to things they believed to be unjust. Several demonstrations took place, in particular to denounce the poor response to the Global Fund for AIDS, TB and Malaria established by the nations assembled at the United Nations General Assembly Special Session on HIV/AIDS (UNGASS) in June 2001, to help developing countries battle AIDS. Each of the member nations is supposed to contribute money to the fund. The contribution of the United States was severely criticized as being insufficient. The demonstrators also asked whether the promises made at UNGASS in June 2001 will become concrete. They condemned the fact that with each passing day, more people die due to the inaction of the world's rich nations.

  ACT-UP Paris staged a demonstration aimed at Coca-Cola, a company that does nothing to help the PHAs that work in its factories in Africa. ACT-UP also criticized Hoffmann La-Roche for having produced enough T-20 for its clinical trials, but not enough to offer compassionate access to European patients who currently have no other treatment options.

  Other demos took place to denounce the lack of access to treatments in developing countries, the vulnerability of women to HIV, the under- representation of women in clinical studies, as well as the lack of drugs targeted to their specific conditions and their increased poverty.

Treatment news:

• Updated guidelines were released during the conference. The guidelines were updated by the IAS (International AIDS Society)-U.S. and published in the Journal of the American Medical Association (JAMA). Here's a look at the major changes made in the most recent version of the guidelines:

  The CD4 cell count is recommended as the main marker for determining when to start treatment. Viral load remains an important marker.

  Dr. Patrick Yeni from France said that one should start therapy when the CD4 count reaches 200. If the CD4 count is greater than 200, the decision to treat or not to treat should be based on several factors: the speed with which CD4 cells decline; viral load level; the patient's interest in taking antiretroviral treatment and his or her potential for adherence; the individual's specific risk of side effects and toxicity; the risk of interactions based on the patient's medical history.

• Gallo declaration (was it a stunt to attract media attention?):

  In a provocative presentation, Dr. Robert Gallo claimed that entry inhibitors should be the target of vaccines. He also declared that the "days of protease inhibitors are numbered because of toxicity problems"!!! So if we add one + one, many people wondered if Gallo wasn't hiding an important piece of news, perhaps the news of the coming decade!

  First there was the Gallo declaration, then the presentations of several well-reputed researchers (who are taken seriously) who focused their talks on vaccines. With all we know about HIV in 2002, it was as if the timing was right to finally begin believing that HOPE is possible and that there might actually be a vaccine that would change everything! (Warning! This opinion must be expressed with care. By no means should false hope be given to patients.)

• Finally, some crucial issues remain stagnant. No change. The more we progress, the less we understand:

  Lipodystrophy. Microbicides. Strategic treatment interruptions. Nothing new, nothing conclusive, conflicting information ... wait and see. ...

Isabelle Raymond, Info-Treatment Counsellor, CPAVIH (Comité des Personnes Atteintes du VIH du Québec) www.cpavih.qc.ca, CATIE Board Member

Highlights:

• Nelson Mandela's presence at the closing ceremony (I am not sure I would say that his speech was a highlight, but his presence was surely a great addition to the cause). And the energy from the crowd at that ceremony.

• ACT UP's daily demonstrations, especially the ones against Coca-Cola and those countries that deny entrance to immigrants with HIV.

• Widespread denunciation -- from activists, researchers and politicians -- of the little money rich countries have given so far to the Global Fund.

• Barcelona's sunshine!

Treatment buzz:

• Vaccines were the topic of the conference. I'm not certain if there is something new that we aren't aware of, but we surely talked a lot about vaccines.

• Efavirenz seems to have been a great winner at this conference, along with Kaletra and tenofovir.

• New treatment strategies were clearly identified, such as wait longer before going on antiretrovirals, and when you start, do it hard.

• Further defining of the relationship between the side effects of antiretrovirals, lipid elevation and coronary-related illnesses or cardiac events.

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.