* Original content from our Mapping Pathways blog team
We checked in with our colleague Daniella Mark from the Desmond Tutu HIV Foundation in South Africa, a Mapping Pathways partner organisation. For the past year, she has been conducting in-depth stakeholder interviews with South African policymakers, advocates, community leaders, physicians, academics, and scientists. As Daniella puts it, “All of these people are essentially gatekeepers; they have the ability to either push forward or halt a particular HIV prevention strategy or technology.” We spoke with her about some of the trends she’s observing from her on-the-ground interviews, and her insights on HIV prevention within the South African context. This is the first part of a two-part interview.
Please briefly tell us a bit about yourself?
DM: Yes, of course. I’ve been with the Desmond Tutu HIV Foundation for six years now. My field of expertise is psychosocial research in the HIV field, which includes prevention — researching behavioural interventions or psychosocial issues around biomedical interventions (such as risk reduction counselling), as well as treatment — researching things like adherence and loss to follow-up and the psychosocial issues that impact them, like alcohol and drug abuse.
The Mapping Pathways research has been going on for almost a year now. What are some of the general trends you’re noticing for South Africa from the stakeholder interviews?
DM: Because I’ve been doing the interviews myself, I am very close to the data. In general, what’s particular to South Africa is that while people are interested in different prevention technologies and strategies, there’s this huge concern about resources. It’s just that we have such a high incidence rate and, as of now, we have no prevention technology to effectively fight the disease apart from tools like condoms or, in some circumstances, circumcision. And we’ve been battling to make sure even these prevention strategies are effectively rolled out. So when you talk to people about something as far away from these existing prevention tools as PrEP, they can’t even imagine how we can incorporate this into our present strategy.
So, I’m finding that capacity/resource concerns are present in each interview. People are in a state that they don’t know how we can pull this off. There’s also this ethical concern amongst researchers that we’re not effectively doing what we know works to curb the epidemic (condoms, etc), so there’s this ethical question over whether we can start revving up to bigger, more expensive prevention strategies if we’re not even giving sick people the treatment they need.
What is the general feeling about PrEP amongst the HIV advocacy community in SA right now?
DM: I’m finding that, as a whole, there is an interest in PrEP but there’s a lot of trepidation about “how”? I think people have this feeling that there are conflicting trial results, and it’s not quite clear how we put iPrEx and FEM-PrEP together, for instance. How do we understand these two conflicting results? We need to understand all this better. There’s a feeling that there’s a lot of excitement around PrEP, but it’s not particularly justified in the context of South Africa. In SA, we have a generalised epidemic, so we wouldn’t know which specific group to roll PrEP out too — we would need to give it to our entire population of 50 million people, or at least our adult population of 30 million, which is just not feasible. Whereas, in countries like the States or in India, you could find specific groups, such as gay men or men who have sex with men, to give PrEP to — which makes the question of resources and costs more manageable. So there is concern about the size of the group we would have to roll PrEP out to in South Africa, and also about the efficacy of the strategy.
There is also concern about how we don’t have all the drugs available for treatment. It takes time to get pharma companies to give drugs to us at third-world prices, and interlinked to this concern are the questions of adherence and resistance. Tenofovir, which is one of the main drugs for use as part of antiretroviral therapy combinations such as those used in PrEP, is also first-line treatment in South Africa; what happens when an individual becomes resistant to it before they even present for first-line treatment? Second-line is far more expensive and we have no third-line options. There is a further and related concern that patients who are not symptomatic might adhere more poorly to PrEP (since they are not HIV-positive and are not experiencing HIV-related symptoms that may act as adherence motivators). As a result, they may be more likely to become resistant to the drugs, and then we’ll have difficulty providing treatment options if they were to become infected.
Other questions about “how” revolve around where would we run this programme out of? Would we open more HIV clinics with capacity to serve the general population as well as those infected? But then we run into the problem of stigma, which is a huge problem in Africa. Would people want to come to an HIV clinic for PrEP and face the stigma of going to such a clinic if they are not even infected? There were some suggestions that we could run PrEP programmes out of family-planning clinics, but then the individuals in the clinic would need upscaled training, and do we have the resources and money to provide this training effectively?
So, right now in South Africa, the feeling about PrEP is how, how, how? People are open to it, but want more consistent data or at least to understand the inconsistencies in the data. Mostly though, the feeling is that we have to figure out these questions for ourselves — we can’t even follow the lead of the countries we normally follow such as the United States, because our situation is different since we have such a high incidence rate and generalised epidemic.
Stay tuned to the Mapping Pathways blog for the second part of Daniella’s insightful interview on the HIV-prevention mood in South Africa, and what she thinks some of the big questions and trends for 2012 will be.
[Content that is linked from other sources is for informational purposes and should not construe a Mapping Pathways position.]
Please briefly tell us a bit about yourself?
DM: Yes, of course. I’ve been with the Desmond Tutu HIV Foundation for six years now. My field of expertise is psychosocial research in the HIV field, which includes prevention — researching behavioural interventions or psychosocial issues around biomedical interventions (such as risk reduction counselling), as well as treatment — researching things like adherence and loss to follow-up and the psychosocial issues that impact them, like alcohol and drug abuse.
The Mapping Pathways research has been going on for almost a year now. What are some of the general trends you’re noticing for South Africa from the stakeholder interviews?
DM: Because I’ve been doing the interviews myself, I am very close to the data. In general, what’s particular to South Africa is that while people are interested in different prevention technologies and strategies, there’s this huge concern about resources. It’s just that we have such a high incidence rate and, as of now, we have no prevention technology to effectively fight the disease apart from tools like condoms or, in some circumstances, circumcision. And we’ve been battling to make sure even these prevention strategies are effectively rolled out. So when you talk to people about something as far away from these existing prevention tools as PrEP, they can’t even imagine how we can incorporate this into our present strategy.
So, I’m finding that capacity/resource concerns are present in each interview. People are in a state that they don’t know how we can pull this off. There’s also this ethical concern amongst researchers that we’re not effectively doing what we know works to curb the epidemic (condoms, etc), so there’s this ethical question over whether we can start revving up to bigger, more expensive prevention strategies if we’re not even giving sick people the treatment they need.
What is the general feeling about PrEP amongst the HIV advocacy community in SA right now?
DM: I’m finding that, as a whole, there is an interest in PrEP but there’s a lot of trepidation about “how”? I think people have this feeling that there are conflicting trial results, and it’s not quite clear how we put iPrEx and FEM-PrEP together, for instance. How do we understand these two conflicting results? We need to understand all this better. There’s a feeling that there’s a lot of excitement around PrEP, but it’s not particularly justified in the context of South Africa. In SA, we have a generalised epidemic, so we wouldn’t know which specific group to roll PrEP out too — we would need to give it to our entire population of 50 million people, or at least our adult population of 30 million, which is just not feasible. Whereas, in countries like the States or in India, you could find specific groups, such as gay men or men who have sex with men, to give PrEP to — which makes the question of resources and costs more manageable. So there is concern about the size of the group we would have to roll PrEP out to in South Africa, and also about the efficacy of the strategy.
There is also concern about how we don’t have all the drugs available for treatment. It takes time to get pharma companies to give drugs to us at third-world prices, and interlinked to this concern are the questions of adherence and resistance. Tenofovir, which is one of the main drugs for use as part of antiretroviral therapy combinations such as those used in PrEP, is also first-line treatment in South Africa; what happens when an individual becomes resistant to it before they even present for first-line treatment? Second-line is far more expensive and we have no third-line options. There is a further and related concern that patients who are not symptomatic might adhere more poorly to PrEP (since they are not HIV-positive and are not experiencing HIV-related symptoms that may act as adherence motivators). As a result, they may be more likely to become resistant to the drugs, and then we’ll have difficulty providing treatment options if they were to become infected.
Other questions about “how” revolve around where would we run this programme out of? Would we open more HIV clinics with capacity to serve the general population as well as those infected? But then we run into the problem of stigma, which is a huge problem in Africa. Would people want to come to an HIV clinic for PrEP and face the stigma of going to such a clinic if they are not even infected? There were some suggestions that we could run PrEP programmes out of family-planning clinics, but then the individuals in the clinic would need upscaled training, and do we have the resources and money to provide this training effectively?
So, right now in South Africa, the feeling about PrEP is how, how, how? People are open to it, but want more consistent data or at least to understand the inconsistencies in the data. Mostly though, the feeling is that we have to figure out these questions for ourselves — we can’t even follow the lead of the countries we normally follow such as the United States, because our situation is different since we have such a high incidence rate and generalised epidemic.
Stay tuned to the Mapping Pathways blog for the second part of Daniella’s insightful interview on the HIV-prevention mood in South Africa, and what she thinks some of the big questions and trends for 2012 will be.
[Content that is linked from other sources is for informational purposes and should not construe a Mapping Pathways position.]
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