INSPIRE: community engagement and cure at IAS2019
What is the INSPIRE project?
HIV cure research doesn’t happen in a bubble. The bodies and lives of people living with HIV are impacted by research. The whole process needs community input and engagement. The INSPIRE project is working to develop new models and educational strategies for encouraging community engagement in HIV cure research.
INSPIRE stands for Improve, Nuture and Strengthen education, collaboration, and communication between People living with HIV and REsearchers. The project aims to influence how these groups work together in HIV cure clinical studies. See here for a more detailed description of the project and its aims.
INSPIRE had a team on the ground at the International AIDS Society Conference on HIV Science in Mexico City from 21-24 July 2019 (IAS 2019). The team hosted pop-up classes on community engagement, and provided snapshot reflections of their experiences.
IAS Conference cure highlights
Our IAS 2019 Cure roadmap lists all the HIV cure-related sessions from the conference.
HIV & HBV Cure Forum
The International AIDS Society Towards an HIV Cure initiative hosted the 2019 HIV & HBV Cure Forum as a lead-in to the main conference. The forum provided a sneak peek of the main conference and a venue for discussion. The forum posed the question of how everyone can work collaboratively to progress towards a cure for both HIV and Hepatitis B. These two chronic viruses share many features.
Discussions included:
- What is blocking progress? In the community? In industry? What are the ethical barriers?
- How can people collaborate to make progress? We need government agencies, funders, researchers and industry to work together!
- Updates on long-acting antiretrovirals. What will they tell us about ongoing replication during therapy?
- Overview of techniques to measure the HIV reservoir
- Importance of measuring the HIV reservoir in tissues such as the gut and lymph nodes
- What integration site analysis can tell us about which HIV-infected cells replicate
- Updates on engineered broadly neutralising antibodies for both treating and potentially curing HIV
For a more detailed exploration of new strategies to get rid of the HIV reservoir, see here
Day 1
Paula Cannon from the University of Southern California gave a plenary talk on stem cell and genome editing for HIV cure. She addressed strategies for editing the CCR5 receptor. She also responded to the CRISPR babies controversy (there are better ways to prevent HIV). Paula also highlighted the important work of the ICISTEM cohort in understanding the impact of stem cell transplantation in HIV.
The session What is the cure, why do we need it and how do we get there? brought together a diverse audience. Presentations included updates on the London and Dusseldorf patients. These two individuals are now 22 and 8 months off therapy without viral rebound.
Paula Cevaal and Jared Stern from the Doherty Institute reflected on their Day 1 highlights. Jared mentions UCSF researcher Nadia Roan’s work on new technologies to identify latently infected cells. This is important because we need better ways to see which cells are harbouring HIV to be able to get rid of them. Paula was impressed by the large numbers of presented studies drawing on generous tissue donations from people living with HIV.
@JardStern and Paula Cevaal from @TheDohertyInst providing an #HIVcure update from Day 1 of #IAS2019 @IAS_conference. Follow for more updates on what's to come! pic.twitter.com/gwOe3Stmcc
— HIV cure (@HIVcureAU) July 23, 2019
The session Research by and for whom? Community engagement in research tackled the challenge and benefit of community engagement in HIV research. The conference website includes most of the presentations from the session. Karine Dubé, an INSPIRE investigator from the University of North Carolina, used the example of HIV cure research to highlight successes and failures to reflect the perspectives of people living with HIV in clinical studies.
Day 2
Day 2 included a focus on analytical treatment interruptions or ATI. This is a strategy for carefully stopping antiretroviral therapy in people who have received a cure intervention to see if they can control HIV without treatment. Presentations in the HIV remission and control trials session touched on the ethical issues around treatment interruption, lessons from animal studies involving ATI and community perspectives on treatment interruption.
Our correspondents Jared and Paula report that day 2 addressed the ongoing debate over latency versus residual replication. Latently infected cells don’t produce any new virus, however many researchers think that some infected cells produce low levels of virus in the tissues (so-called residual replication). This is an area of research that is gaining more attention. The session Hide and Seek – reservoirs and strategies to target them featured presentations on where HIV reservoirs are and new ways to identify them. María Buzón from the Vall d´Hebron Research Institute in Spain discussed the ongoing search for a reliable marker to identify the latent reservoir. Ya-Chi Ho from Yale University presented data on how integration sites affect the activation level of the HIV reservoir and efforts to find new compounds to reactivate it.
Day 2 of #IAS2019 @IAS_conference brought more interesting sessions relevant to the field of HIV Cure. Quick update of the highlights by @JardStern and Paula Cevaal from the @TheDohertyInst pic.twitter.com/PRaZHJCL0u
— HIV cure (@HIVcureAU) July 24, 2019
What are pop-up classes?
HIV pop-up classes were introduced at AIDS 2018 in Amsterdam. Sponsored by the International Council of AIDS Service Organisations (ICASO), the classes are an innovative strategy for community (and other!) delegates to explore the basics of various essential sciences underpinning the conference content.
Using only a banner to set the stage, presenters facilitate 10-15 mins of accessible scientific content, without scheduling, across the conference venue.
What was the focus for pop-up classes at IAS2019?
Pop-up classes on HIV cure and community partnerships were run three times per day during IAS 2019.
The classes explored key strategies for community engagement. The classes also addressed the value of engagement to basic science, translational science, and those undertaking it. The class aimed to be provocative and to stimulate discussion. Questions included:
- What is the HIV community and who is a stakeholder in it?
- When should engagement occur and what say should the community have over studies?
- What are the benefits of heightened community education about HIV cure research on future studies?
- How can we establish a mutual understanding of both community and research concerns?
The aim was to INSPIRE scientists to consider how community engagement can be improved in the research they perform. Co-creation of innovative strategies were stimulated during the class as well as discussing strategies that arose from the INSPIRE workshop, particularly on the role of social media. Ultimately, this class fostered a dialogue amongst scientists and community members attending IAS 2019. We hope this dialogue will be shared with peers and colleagues, and implemented by class participants.
Meet the pop-up class instructors
Paula Cevaal
Paula has recently returned to the Peter Doherty Institute for Infection and Immunity to undertake a PhD on HIV cure in Professor Sharon Lewin’s lab. While trained as a basic scientist, she submerged herself in community activism after graduating from her Masters degree. She vice-chaired the Amsterdam Youth Force in the lead up to and during AIDS 2018, advocating for meaningful youth participation in the global HIV response.
Jared Stern
Jared is undertaking a PhD in the Peter Doherty Institute for Infection and Immunity after completing a Bachelor of Biomedicine (Honours) at The University of Melbourne. His current research has examined how HIV latency is maintained, revealing novel mechanisms and interactions with host cells to pursue in exploiting as an HIV cure strategy. Jared is a peer facilitator for Gen Next, a youth support group for people living with HIV at Living Positive Victoria, a community-based organisation working to enable and empower people affected by and living with HIV.
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