Seth Berkley On AIDS and Public Understanding

Question: How have message movies like ‘The Constant Gardner’ affected opinion about disease?

Seth Berkley:  It is a very important question because there are always going to be bad acts that occur. There are always going to be things that aren’t tested the way they should be and of course, they do give a bad name and they often have enormous repercussions for lots of things that aren’t associated with that. For example, you have a product that is tested. The product ends up causing a rare side effect. For the next 10 years, you might see a slowdown in products getting approved so there’s always these kind of untold consequences. For the type of work we’re talking about, the critical issue is forming really strong partnerships with those you’re working with. What does that mean by a partnership? It means people have to be fully understanding of what’s going on. They have to be engaged themselves in the research. And it isn’t only the researchers and the patients; the practitioners around them, the community leaders around them, the media leaders around them, they all need to understand. They have to have a chance to ask their questions because if they don’t, then you can get a chain of bad ideas spread and bad rumors spread, and then that can lead to all kinds of problems. We don’t get it right, other groups don’t always get it right, but if you follow the principles of getting that dialog going, taking the time, what you end up with is fabulous outcomes because you’ve got all these amazing scientists in these countries who want to be involved, care about it, they’re local heroes. So for them, giving them an opportunity to partake in a global effort to try to solve this problem is something fabulous and the communities want to be engaged. People who have been afflicted and affected by this want to engage. It’s just a matter of making sure that you do it in a way that’s fair and take into account all these issues.

Question: What’s your greatest concern about conceptions of AIDS?

Seth Berkley:  There’s a couple of answers to that. It’s been interesting because it started in fairly affluent group of people and in the west, it’s moved into communities of color, it’s become a disease of poverty, it’s moved into groups that are IV drug users and other groups who are somewhat marginalized from society. That has a different effect because one of the things happened because this started in affluent gay community, they knew how to organize themselves, they were vocal, they could put money and resources against it and that’s changed now. One of the challenges we have now in the west is trying to get it out from that, to bring it forward to have people talk about it. People are afraid of it. They don’t want to discuss it; the stigma, the issues. In the developing world, we’ve also had a shift. It’s gone from being initially a disease of the wealthy, now again to being more of a disease of poverty, people who aren’t as educated, people who don’t have as many choices. So when it becomes a disease of poverty, your degrees of freedom are less in terms of trying to deal with it in some sense. The long term goal would be to deal with the poverty associated with it but the short term goal is to make sure that you engage the community as best as you can and try to create an atmosphere that can allow these things to be talked about and discussed.

Berkley says the critical issue is forming really strong partnerships with those you're working with.

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