Risk perception, ARV-based prevention strategies and grassroot conversations – a preview of the upcoming Mapping Pathways monograph

Original content from our Mapping Pathways blog team

Risk perception and the consequent behavioral responses has been a theme that has fascinated Philip Smith throughout his professional career.

Smith, a Ph.D. candidate at the Desmond Tutu HIV Foundation (DTHF), a Mapping Pathways partner organisation, first encountered the subject of risk perception as he was completing his masters degree in social science and psychology at the University of Cape Town. Smith realised that scaring people with death as part of a prevention strategy may actually end up leading people to deny their own vulnerability.

“Smoking is an example where a key prevention strategy involves subjecting people to images of death. My research indicates that this kind of messaging actually leads to a psychological tension that can lead to risk-denial or even an increase in self-esteem boosting risky behavior to relieve that tension,” says Smith.

Smith’s interest in risk and the HIV field led him to DTHF and subsequently to a key role in the Mapping Pathways project; writing up the results of the 2011 Online Survey as part of a monograph to be published this spring by project partner, RAND.. The online survey is one of four data collection mechanisms of the Mapping Pathways project: the other three being the ExpertLens, the Literature Review and the Stakeholder Interviews.

“The Online Survey, which happened in India, South Africa, and the U.S. in 2011, seeks to understand what people at the grassroots were thinking about implementation and what the specific challenges are on successfully implementing ARV-based prevention strategies, such as PrEP and TLC+, also known as treatment as prevention, in their communities,” says Smith

The methodology involved first creating a questionnaire with two different sections: a multiple choice section and a qualitative section where respondents were asked about information they wanted and concerns they may have about ARV-based prevention strategies.

Over 1,000 individuals participated in the survey across the three countries. Among other questions, participants were asked how important they thought ARV-based prevention strategies were and what would they find useful in their work. In addition to asking participants to quantify how important they believed the different strategies are in preventing HIV infection in their communities, they were also given the opportunity to share their perspectives of the barriers to implementing successful ARV-based prevention strategies.

Lastly, participants were asked to suggest what kinds of information they would find helpful in implementing community friendly, impactful, ARV-based prevention strategies.

“Most participants felt positively about ARV-based prevention strategies and their implementation. TLC+ was the most favoured strategy and some valid concerns were raised about cost and the lack of access to healthcare, especially in South Africa and India but also in the U.S.,” says Smith.

Smith says that a key conversation that developed revolved around how healthcare systems around the world, currently tailored towards treatment, would have to adapt with a twin focus on prevention to successfully implement ARV-based prevention strategies.

Consequently, participants wanted to know how best to raise awareness about the different prevention strategies, with some participants requesting that information be made available comparing the different strategies to maximise informed choices in communities. Participants also expressed interest in understanding what policy-makers thought about ARV-based prevention methods because this would act as a useful guide for implementation.

Besides data collection and gathering an evidence base, the key mission of the Mapping Pathways project is to disseminate findings and liaise with the global HIV-treatment and prevention community at large around the use of ARVs for prevention. The upcoming monograph, “Developing evidence-based, people-centered strategies for the use of antiretrovirals as prevention” will touch on all these themes and more, including the theme of risk that has so intrigued Smith throughout his professional career.

Stay tuned for the Mapping Pathways monograph, coming soon

[Content that is linked from other sources is for informational purposes and should not construe a Mapping Pathways position. Please look for us on Facebook here www.facebook.com/MappingPathways and you can follow us on Twitter @mappingpathways as well.]

Providing a range of prevention options: In conversation with Linda-Gail Bekker

Original content from our Mapping Pathways blog team

We need options. Not everyone in the world is a good pill taker. Like so many things in life, we may realise that people need different prevention options since they have different personalities.

In the final part of this five-part series, Linda-Gail Bekker of the Desmond Tutu HIV Centre, a Mapping Pathways partner organisation, speaks about the importance of adherence, both in clinical trials and the real world, and the challenges and issues facing adolescents. Read parts one, two, three and four

MP: You have mentioned adolescents as a particular vulnerable group in South Africa. In an interview conducted earlier this year, your colleague, Dr. Melissa Wallace, also talked about adolescents as an especially at-risk group. What are some factors that make them so vulnerable?

LGB: One particular reason why adolescents are highly at risk for HIV is because many are at the stage of their lives where they may be experimenting with their sexuality. They may also find themselves in relationships where negotiating condoms may be incredibly difficult.

This maybe the case with younger women whose relationships can be with older men and young MSM outing themselves for the first time and who may then choose to go out with older men.  In that situation, being able to use a PrEP tablet discreetly and under their own control could be a life-saving step.

So putting prevention into the hands of the vulnerable becomes a very important tool. But we can only do this if we are sure it’s safe in this population, which requires carefully run clinical research in order to adequately test the product in the relevant populations.

This requires resources and investment from sponsors and funding agencies even though this is often regarded as “high risk investment”. In that regard, I’m delighted that we’ll be starting an MP3 project (methods of prevention) based on a grant awarded to us by the National Institutes of Health (NIH) to look at PrEP and other biomedical prevention modalities in adolescents between 14-17 years old.

MP: Adherence is an issue that has come up quite a bit this year, from M2012 to AIDS 2012. How much are people talking about adherence and about taking lessons learned from trials into the real world?

LGB: Adherence is the Achilles heel of the HIV prevention and treatment worlds. This is where biology meets behavior. We know that the pill is efficacious – Partners PrEP showed that beautifully. In fact, every single one of the clinical trials has shown that once adherence increases there is a direct correlation with efficacy in the results. Starting with the 39% in the CAPRISA study leading on to 44% in the iPrEx study and going on to an astounding 75% in the Partners PrEP study – each one had an increased overall adherence rate and with this an increase in point efficacy, so the correlation appears to be a real phenomenon.

In addition, the sub-studies done in every trial showed that high adherers within a study had a better efficacy compared to the lower adherers. So we can quite confidently say there is a robust relationship between adherence and efficacy.

So how do we get people to adhere? Motivations play a great role. Partners PrEP which enrolled discordant couples had a great in-built motivation that one was protecting a loved one by taking the pill, which may be the reason we saw particularly high adherence for that population.

I think we also need to understand that not everybody in this world is a good pill-taker. There will be those who just cannot bring themselves to swallow pills on a daily basis. So PrEP may not be a very good idea for them. In that situation, maybe a rectal microbicide or a microbicide that’s part of a lubricant may work very well for that individual.

We need options. If we get to that stage in the future where other prevention technologies are available, like getting a shot in the arm that lasts three months, then we need that option on the table too. Like so many things in life, we may realise that people need different prevention options since they have different personalities.

MP: What are some of your final thoughts on what needs to happen to stem the HIV epidemic?

LGB: We need to have conversations on several different levels: ethical, scientific, public health, politics and priorities. Different countries and communities will be at different places. Some of the hard questions are : Who pays? How will we implement this prevention strategy? Is this strategy for the generalised epidemic or is it only for selected key populations? Who are the key populations? What are the social factors that make them vulnerable? Is this ethical? Does it make sound public health sense? What wont be afforded if we go this route? Who will benefit if we do?

Those are all very hard questions but they deserve to be asked and certainly require ongoing dialogue. This brings us back to the Mapping Pathway- we have been contributing to the dialogue through this project. We also need to do the modeling exercises and implement some feasibility type projects and then continue to raise more questions., It’s a wonderful thing that we are at a point where we can actually have these conversations. They are not hypothetical questions anymore. It is urgent to have these discussions in such a way that the next steps become clear and infections can be averted before too much more time is lost.

Linda-Gail Bekker is deputy director of the Desmond Tutu HIV Centre at the Institute of Infectious Disease and Molecular Medicine, University of Cape Town. She also serves as the chief operating officer of the Desmond Tutu HIV Foundation, a Mapping Pathways partner organisation. 

Stay tuned for the Mapping Pathways monograph, coming in early 2013

[Content that is linked from other sources is for informational purposes and should not construe a Mapping Pathways position. Please look for us on Facebook here www.facebook.com/MappingPathways and you can follow us on Twitter @mappingpathways as well.]