Mapping Pathways is a multi-national project to develop and nurture a research-driven, community-led global understanding of the emerging evidence base around the adoption of antiretroviral-based prevention strategies to end the HIV/AIDS epidemic. The evidence base is more than results from clinical trials - it must include stakeholder and community perspectives as well.

13 February 2012

Mapping Pathways U.S.: What we’ve heard

Original content from the Mapping Pathways blog team

An important part of the Mapping Pathways project is to learn what people think and feel about ARV-based prevention strategies, not just through academic streams and studies but also through everyday experience and wisdom. What do the people who work daily with treatment and prevention and/or have first-hand experience of living with HIV think? What are their concerns? What information do they need about pre-exposure prophylaxis (PrEP), TLC+ (testing, linkage to care, plus treatment), post-exposure prophylaxis (PEP) and microbicides? Do they think these prevention tools can be useful for their community or country? Would they use them or prescribe them? Do they feel these questions are even important to explore?

The Mapping Pathways online survey and in-depth stakeholder interviews from 2011 – both conducted with individuals in India, South Africa and the United States – are important ways for us to gain knowledge on these questions. The team has been busy unpacking a number of interesting observations and ideas now that the interviews have finished and the survey is closed. Of course, this data is still preliminary but we thought we’d share some snapshots of what we’re hearing from US doctors, policymakers, and activists on the ground.

Big picture thoughts from U.S. respondents
Participants from the stakeholder interviews were generally supportive of the Mapping Pathways initiative and the four prevention interventions discussed in the interview. They believe having planning tools that assesses the relative benefits of each intervention is potentially important and could be empowering. One participant said, “This is very important and critical in terms of timing. We are at a crossroads in the US right now. We are more than a year after the release of the National HIV/AIDS Strategy, at the beginning of implementation of the Affordable Care Act, and are still in the midst the most difficult financial situation in modern times. We need to make decisions and choices that will result in a better response to strategize and improve access to health in general.”

Another participant felt very positively about ARV-based prevention strategies, “I think TLC+, microbicides and PrEP have a strong potential for ending HIV as we know it. I think if we can get past fears, fighting, and the positioning and come together locally, nationally, internationally and put our best thinking around how to make these interventions work for people living with and at risk of HIV, we can make a significant difference in incidence.” The empowering aspect of ARV-based prevention strategies was also a focus for some participants. One remarked, “I think the most important thing is microbicides – It gives people who are in a vulnerable position the power of control.”

Big picture concerns
Despite general enthusiasm, there were also reservations about the U.S.’s ability to expand the availability of these interventions, particularly TLC+, and oral PrEP, as microbicides are not yet available. Having adequate resources was the main concern across all four interventions. As one individual remarked, “I feel very strongly about treating people living with HIV… I think in theory, PrEP is great, but in practice? Where will the money come from? I don’t disagree with the concept (of PrEP), but think we should prioritize people living with HIV to get meds instead of people who are HIV negative. I am also concerned that only wealthy people will get PrEP.” Another individual echoed this sentiment, “We are totally under-resourced in this area… Private insurance and Medicaid have no interest in picking up that expense.”

Interest levels
In terms of greater or lesser enthusiasm about each particular intervention, a very preliminary assessment of the hierarchy (greater enthusiasm to lesser enthusiasm) would be:
  • Microbicides: This type of intervention was seen as less costly and less controversial. It is important to emphasize that microbicides are still in the research and development phase.
  • PEP, particularly occupational PEP: There were some concerns about resources, information, and availability of sexual PEP.
  • TLC+: It was felt that this intervention favors starting ARVs regardless of CD4 count. There were mixed views and some discussion on whether the HPTN results support TLC+ with particular at-risk populations, e.g., IV drug users.
  • PrEP: This generated several concerns and questions. These included worries about it being too costly and how would risk be defined; adherence concerns; and concerns about the long-term effects of ARVs on someone who is HIV-negative, which might offset the benefits of prevention.
Mapping Pathways will be disseminating our findings from the 2011 survey, stakeholder interviews, literature review and ExpertLens throughout the year at various conferences and through a number of publications, including scholarly journals, a RAND book, and other platforms. An oral presentation is scheduled to take place at Microbicides 2012.

The Mapping Pathways blog will be an important platform for these findings. Also coming soon, a lively Q&A with our U.S. colleague Jessica Terlikowski about her thoughts on the U.S. HIV prevention landscape in 2012. Stay tuned!

[Content that is linked from other sources is for informational purposes and should not construe a Mapping Pathways position.]

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