A Community Advocate on the Global Stage

An Interview with Shaun Mellors

"How many silences have you broken since Durban? How many more still need to be broken?"

These questions greeted participants in the opening pages of the Barcelona Programme, posed by Shaun Mellors, Chair of the Interventions, Programme Implementation, Advocacy and Policy Committee for Barcelona. Between this position and his work as Community Programme Coordinator for the Durban 2000 meeting, Mellors has intense, first-hand knowledge of the expectations, opportunities, and potential outcomes of the world’s largest AIDS meetings. A native South African and longtime AIDS activist, Mellors has spent nearly two decades blending treatment and vaccine advocacy and working to include developing world perspectives in global discussions—first as coordinator of the Global Network of People Living with HIV and AIDS and then as HIV Vaccine Lobbyist for South Africa’s Medical Research Council. In September, Mellors took on a new role, as vaccine policy coordinator at the International Coalition of AIDS Service Organizations (ICASO) [Editor’s Note: Mellors’ position is funded by an IAVI grant]. Recently, Mellors spoke with Emily Bass, Senior Writer at IAVI Report, to share his thoughts on Barcelona, his new job, and the global challenges and unbroken silences that lie ahead.

What was most striking to you about the Barcelona meeting?

Two important aspects stood out to me. The first was a change in how people think about and see the epidemic. In the presentations and corridor discussions, there was a sense of urgency returning. We know what we need to do to combat this epidemic. So we need to get on and do it.

The other interesting aspect for me was the elevation of the link between prevention and care. Although the conference did introduce a separate prevention track, the link between prevention and care was strengthened and reinforced in several presentations and plenary sessions—that you cannot have effective prevention programs without effective care programs; that it's pointless to pit the two against each other, but that we have to concentrate on them at the same time.

Do you think the prevention versus treatment debate has ended?

I’m not convinced it’s over. I suppose the debate has happened on the international, theoretical level, where we all acknowledge the link between prevention and treatment and care. But although we can talk about it on the global level, the challenge is always what do we do on the country level.

I have to say that I left the Barcelona conference with very mixed feelings. Although we had a framework that tried to integrate science and community in a meaningful manner, I don’t think at the end of the day that we were very successful. The theme of the conference was 'Knowledge and Commitment for Action.' I’m not convinced that sufficient action came out of the conference. It’s certainly difficult after five days of conferencing to justify spending 40 million euros when clear actions did not emerge.

What role can the International AIDS Conference play in the future?

Although these conferences try to be different every time, they’re still being organized in isolation. And they aren’t really linked with what’s happening in the regions. What has happened up to now is that, if there’s been—for want of a better word—a weakness in a conference, then the organizers have tried to solve the problem by organizing another one. For example, the International AIDS Society now has the HIV and Pathogenesis conference, because the science in these international AIDS conferences wasn’t as strong. We have the International Conference on Home and Community Care for Persons Living with HIV/AIDS because that was not well-covered.

All of us have a responsibility to look at the purpose of this international AIDS conference. What are we trying to achieve? Is a successful AIDS conference determined by the number of people who actually attend or by the actions that come out of the conference, and how they are integrated and implemented? How do we hold ourselves and each other accountable?

What kind of actions were you hoping for? What opportunities do you think were missed?

Without a doubt, there certainly was opportunity [to act] on the issue of access to treatment. At the Durban conference, this was a big issue. Everybody acknowledges now that access to treatment is, and should be, and can be a reality. Barcelona would have been an ideal opportunity to talk about how we are going to start implementing that. In Barcelona we had a number of promises that, by the time of the Bangkok conference [in 2004], at least three million more people will have access to antiretrovirals. But there was absolutely no discussion about how that is going to happen. What are the implications of that? How are we going to make it a reality?

Another issue which fell off the agenda has to do with vaccines and microbicides. At the Durban conference, vaccines and microbicides were highlighted in the conference program and in the plenaries. In Barcelona they only had three oral sessions, two symposia and a prevention-related plenary. Questions about community involvement around vaccines and microbicides weren’t on the platform at all—questions like, how do we ensure that the pertinent issues on the global vaccine and microbicide agendas come together? How do we implement them to the benefit of the communities and, of course, for scientific research? How far have we come since the Durban conference? What lessons have we learnt?

You’ve been a vocal advocate for allowing local communities to define the standard of care and other issues in a context-specific way. How can communities support one another’s agendas and develop shared agenda issues?

Up to now it has largely been either global players or global organizations that have tried to define partnerships with developing countries and talk about their issues and concerns. Part of the challenge will be to ensure that community voices are actually brought to the global advocacy agenda, as opposed to the global advocacy agenda coming to the community.

The US has been involved in vaccine trials for a number of years already, grappling with advocacy issues within their own environment, with their own obstacles and challenges. So what has happened by default is that the American advocacy agenda is becoming the standard for developing countries, which then automatically places them at a disadvantage because their discourse or community mobilization or sense of activism is certainly not the same as it is in the US at the moment.

So I certainly think that what AVAC [the AIDS Vaccine Advocacy Coalition] and, to a certain degree, ICASO and IAVI have to do is not only to form partnerships with each other on the global level, but to create the mechanisms for the country and regional community voices to be brought to the global agenda. It’s going to require a fair amount of transparency and hard work to overcome some of the challenges facing communities, particularly in developing countries. But I think if the global players commit to ensuring that those voices are heard—immaterial of whether they are different from American or Canadian voices—they have an opportunity to portray the issues from their own perspective.

It seems like there is sometimes a false dichotomy in discussions about vaccine trials, or community-based research in general, which says that community involvement comes at the expense of speed in moving forward. How do you respond?

It’s very true that this comes up frequently. I think part of the reason is that in a country like South Africa, for example, or even Zimbabwe or Kenya, we haven’t yet been able to define exactly what we mean by community mobilization or preparedness for clinical research.

Also, policymakers and politicians have a big impact on communities. And in a country like South Africa, there have been high-profile political leaders behind the vaccine agenda. They have been pushing the vaccine agenda and emphasizing prevention, but not making the link to care and treatment. So communities are now saying, ‘What is it that I have to do around the issue of vaccines if we have all these politicians and opinion leaders talking about this, but not about treatment or care or support?’

But if we can get the communities to see that it’s a matter of equal attention, and that they can actually take advantage of the fact that politicians are talking about vaccines and microbicides—that they can use this commitment to further the treatment agenda—then I think communities will become more mobilized in terms of advocacy.

What did you do in your job as vaccine advocacy and lobbying manager for the Medical Research Council?

I was with the Medical Research Council [MRC] for 15 months, and then I had to concentrate on the Barcelona conference. Part of my MRC portfolio was to interact with the media around issues of vaccines, because obviously if you have an informed media, you are going to have an informed public. So I held briefing sessions and training workshops for journalists and media. The job also involved trying to prepare for the time when the first person would be vaccinated.

What gaps did you see in the public understanding of vaccines?

Part of the difficulty for the media is that vaccine trials planned for South Africa have constantly been postponed. So obviously the media are skeptical. Why is it being postponed all the time? There wasn’t a very effective, comprehensive strategy for interacting with the media on this issue.

Did you work at all in Hlabisa [an HVTN site preparing for vaccine trials]?

I did work in Hlabisa with the community advisory board. I suppose Hlabisa is a prime example of preparing a community for something that's supposed to take place but never happened.

To what extent did the microbicide trials in the region—and now, plans for a microbicide trial in Hlabisa—change that sense of just waiting?

Part of the reason I left the Medical Research Council was because trial organizers’ understanding of community mobilization and preparedness is very different from what communities themselves would see as mobilization and preparedness. The microbicides trials which took place in a number of sites in a dedicated area—I’m just bracketing them under one umbrella, perhaps not rightly so—concentrated on community preparedness only in terms of the people who participated in the trial. It doesn’t address that those individuals belong to their community and go back to their community.

I think we have to go further to avoid disappointment in the community. Hlabisa is now a potential site for a Phase III microbicide trial. But yet again, only those participants who have made it through the pre-screening protocol are seen as community and concentrated on. All those who went through other surveys and participated in other ways are excluded.

What will you do in your new position as vaccine advocacy coordinator at ICASO?

ICASO has had a vaccine portfolio for the past two to four years, but not too much has come out of that. One of my challenges is to add credibility to the portfolio and ensure that partners and stakeholders who have lost faith, or who are uncertain, come back to ICASO as a player with lots of potential.

I think it’s important that the ICASO portfolio adds value to what is already being done by groups like AVAC and the HVTN education group and IAVI and KANCO [Kenya AIDS NGO Consortium]. ICASO has the credibility to ensure that community voices are brought to the global advocacy agenda. At the same time, ICASO can take those global advocacy issues and, through their partners and regional networks, present them to communities on the country level. We can say, ‘These are the global advocacy issues. How do they pertain to your country’s issues, and what from your country or region is important to take to the global level?’

Part of my task will be to identify potential partners on the country, regional and international levels and to do a needs analysis in terms of where ICASO can actually add value. What other products are needed, what other services? I also want to broaden the scope of the portfolio to include both vaccines and microbicides.

Do you have your first projects in mind?

At the moment, I’m still trying to get over to Toronto [home to ICASO headquarters]. I was supposed to start on the 1st of August. But there has been a bit of a delay in terms of my medical examination, because Canada introduced a new law on the 28th of June requiring HIV testing [for immigrants seeking working permits].

Often, communities that are most at risk or in need of mobilizing—for instance, MSMs and commercial sex workers—are among the most traditionally disenfranchised. But to convey their input to a global level, these communities need a national voice. How do you do that?

There has slowly been a greater recognition of the so-called minor epidemics. In a country like South Africa, the homosexual epidemic is now a kind of minor epidemic, or forgotten epidemic. But it’s all a process. In South Africa, there are now organizations and groups that have managed to get involved in community advisory boards; to go to international conferences and start vocalizing issues of the MSM epidemic. It is happening, and it is a responsibility of ICASO, AfriCASO and ApCASO to ensure that the communities without voices actually have the means and the ability to reclaim them.

In terms of the IV drug-using epidemic—another minority epidemic—ICASO put out a call for submissions by NGOs in Eastern Europe and Russia to host the EuroCASO secretariat. So they’ve identified this as a need and a gap.

You’re very forthright in situations where some people are less comfortable stating what they think or what they’re frustrated with. Yet you work very effectively within established organizations. That’s a rare skill. How do you do it?

Oh, goodness, I’m not quite sure. I think there is a sense of mutual respect for all the stakeholders and funders I interact with. Although I’m always prepared to speak my mind or voice my concerns or preferences, I’m also prepared to listen, learn and try to understand. I suppose that strengths gained from being involved in the gay and lesbian and, to a certain degree, the apartheid struggle, have also helped me. It’s this combination—and, at the end of the day, always delivering on what you say you are going to deliver.