Botswana HIV Cure Research Academy Launch: A New Era of Community Engagement in HIV Cure Research

On 30 August 2024, the Botswana Community HIV Cure Research Academy was officially launched at the CEYOHO Centre in Tlokweng, marking a significant milestone in the fight against HIV. The launch of the Academy symbolises a new era where community-driven insights are integrated with scientific research to accelerate the global pursuit of an HIV cure. The event brought together a diverse group of stakeholders, including People Living with HIV (PLHIV), researchers, civil society organisations (CSOs), and other community representatives.

Vision of the Academy

The Academy’s vision is to become a pivotal platform that harmonises community-driven perspectives with scientific research, to accelerate progress towards finding a cure for HIV. It is designed to bridge the gap between PLHIV and researchers, ensuring that community members actively shape research efforts, study designs, and policy advocacy. The Academy aims to provide education and awareness on HIV cure science, advocate for community involvement in research, and foster partnerships that support the research and policy processes.

 Recognising Key Civil Society Organisations (CSOs)

A notable highlight of the launch event was the presence of several prominent CSOs, whose involvement underscores the collaborative nature of the Academy. These organisations, which have been at the forefront of supporting PLHIV in Botswana, include:

• Botswana Network of PLHIV (BONEPWA): As a leading organisation advocating for PLHIV in Botswana, BONEPWA has played a central role in ensuring the voices of PLHIV are heard in the fight against HIV. Their participation in the Academy's launch reinforced their commitment to driving forward advocacy for an HIV cure, providing leadership and insight into community needs.
• Sentebale Organisation: Known for their work with vulnerable children and young people, Sentebale's involvement in the Academy emphasises the importance of including youth perspectives in HIV research and advocacy. Their experience in supporting young people affected by HIV will be crucial as the Academy seeks to broaden its reach and impact among diverse communities.
• Old Naledi Support Group: Representing grassroots-level efforts to support PLHIV in the Old Naledi area, this support group’s involvement highlighted the need for localised community engagement in research. Their participation underscored the importance of ensuring that HIV cure research addresses the needs of marginalised communities.
• Thusang Bana Support Group: This group has long been committed to supporting families and children affected by HIV. By participating in the launch, Thusang Bana Support Group demonstrated the critical need for community-based organisations to be part of the conversation on HIV cure research, particularly in addressing family and youth-focused interventions.
• Positive Moments Support Group: Focused on empowering individuals living with HIV, Positive Moments Support Group plays an important role in addressing the psychological and social aspects of living with HIV. Their involvement in the Academy reflects their ongoing efforts to reduce stigma and promote advocacy for cure research.

The presence of these CSOs, along with other key organisations, underscored the Academy's mission to be an inclusive and community-led platform. The diversity of organisations present ensured that the voices of various sectors of society were represented, contributing to a comprehensive and unified approach to HIV cure research.

 Event Overview and Programme Highlights

The event began with a warm welcome from Ernest Moseki of the Botswana Harvard Health Partnership, who served as the Director of Ceremony. He set the tone for the day by emphasising the significance of community engagement in HIV cure research and the unique role the Academy would play in bringing together PLHIV and researchers.

 Keynote Address: The Future of HIV Cure Research

Speaker: Professor Catherine Koofhethile, Botswana Harvard Health Partnership
Professor Catherine Koofhethile delivered an insightful keynote address that focused on the future of HIV cure research, highlighting current strategies and challenges in the field. Her presentation centred on the role of the Botswana Harvard Health Partnership (BHP) in advancing HIV cure research and provided an in-depth exploration of the scientific approaches currently being explored.

Key Themes in Prof. Koofhethile’s Presentation:

• Sterilising vs. Functional Cure:
  Prof. Koofhethile explained the distinction between the two types of HIV cures:
• Sterilising Cure: The complete eradication of HIV from the body, where all HIV-infected cells are eliminated and the individual no longer needs ART.
• Functional Cure: HIV is reduced to undetectable levels, controlled by the immune system, but not completely eradicated. This allows the individual to stop ART without the virus progressing or being transmitted.
• HIV Cure Research Approaches:
  Prof. Koofhethile detailed several cutting-edge strategies being researched in the global fight for an HIV cure:

             Shock and Kill Strategy: This strategy uses latency-reversing agents to activate dormant HIV hiding in reservoirs within the body. Once “shocked” out of hiding, the virus can be targeted and eliminated by the immune system or therapies.

           Gene Therapies: Emerging technologies like CRISPR-Cas9 are being explored to edit or remove HIV from infected cells, offering a promising path towards a functional cure.

        Therapeutic Vaccines: Therapeutic vaccines are being developed to boost the immune system's ability to control or eliminate HIV, potentially reducing or eliminating the need for ART.

        Block and Lock Strategy: This strategy aims to lock the virus in a dormant state permanently, preventing it from reactivating even if ART is stopped.

HIV Persistence and Challenges: Prof. Koofhethile discussed the persistent challenge of HIV reservoirs—hidden pockets of the virus that remain even after years of successful ART. These reservoirs allow the virus to rebound if treatment is interrupted. She highlighted the ongoing difficulty in eradicating HIV entirely due to its ability to evade the immune system, despite the advanced therapies being developed.

Ongoing Research at BHP: Prof. Koofhethile provided updates on key HIV cure research studies being conducted at the Botswana Harvard Health Partnership, including the Adolescent Cohort and the Tatelo study. These projects focus on understanding HIV persistence and exploring new strategies to achieve either a sterilising or functional cure.

Community Involvement: In conclusion, Prof. Koofhethile emphasised the critical role of the community in advancing HIV cure research. She stressed that the involvement of PLHIV and their insights are essential to shaping research priorities and ensuring that cure efforts align with community needs.

 Understanding HIV Cure Research

Speaker: Kennedy Mupeli,
Kennedy Mupeli shifted the focus to the central theme of HIV cure research. He provided the audience with a foundational understanding of what an HIV cure entails, explaining that the ultimate aim of cure research is to achieve and maintain a state where HIV is no longer detectable or harmful to the body.

Kennedy outlined the two main types of HIV cures:

• Sterilising Cure: This would involve the complete eradication of HIV from the body. All HIV-infected cells would be eliminated, leaving the individual permanently free from the virus without the need for ongoing antiretroviral therapy (ART).
• Functional Cure: In this case, HIV would be reduced to undetectable levels but not completely eradicated. The virus would be controlled by the immune system without causing harm, allowing the individual to stop ART without the risk of the virus progressing or being transmitted.

 Why an HIV Cure is Desperately Needed

Kennedy made a compelling case for why the world urgently needs an HIV cure, pointing out the limitations of existing treatments and the immense burden faced by PLHIV. Despite the significant advances in ART, Kennedy stressed that ART is not a cure. Lifelong treatment remains necessary for most PLHIV, which can lead to complications such as resistance and side effects.

Kennedy also discussed the broader impact of an HIV cure:

• Economic Burden: The financial cost of providing lifelong ART to millions of people around the world is substantial. Kennedy emphasised that a cure would alleviate this financial strain on both individuals and healthcare systems.
• Psychological and Social Benefits: Living with HIV often comes with a heavy psychological and social toll due to stigma and discrimination. Kennedy explained that an HIV cure would not only improve health outcomes but also help reduce the stigma associated with living with the virus.
• Prevention of Transmission: An effective cure, whether sterilising or functional, would dramatically reduce the risk of HIV transmission, playing a key role in ending the global HIV epidemic.

HIV Cure Research Focus and Current Strategies

Kennedy provided an overview of the various scientific strategies currently being explored in HIV cure research. He explained that researchers are focused on a few key areas that hold promise for both functional and sterilising cures:

1. Eradicating HIV Reservoirs:
• Shock and Kill Strategy: This strategy involves using latency-reversing agents to “shock” hidden HIV out of reservoirs where it remains dormant. Once exposed, the virus can be targeted and killed by the immune system or other therapies.
• Gene Therapies: Technologies like CRISPR-Cas9 are being explored to modify or remove HIV from infected cells. Gene editing represents a potential path to a functional cure, where the virus could be permanently suppressed without the need for ART.
2. Developing Therapeutic Vaccines:
• Therapeutic vaccines are being developed to boost the immune response in people already living with HIV. These vaccines aim to help the immune system control or eliminate the virus, reducing or eliminating the need for ART.
3. Understanding HIV Persistence:
• Kennedy highlighted the case of the Berlin Patient, the first known person to be cured of HIV after receiving a bone marrow transplant. He explained that ongoing research seeks to understand why HIV persists in some individuals and how it can be completely eradicated in others.
4. Block and Lock Strategy:
• Another emerging approach is the Block and Lock strategy, which aims to lock HIV in a dormant state permanently. By preventing the virus from reactivating, this approach could allow PLHIV to stop taking ART without risking a viral rebound.

 Current Limitations of Antiretroviral Therapy (ART)

Kennedy discussed the limitations of current ART treatments, which, while effective at controlling HIV, do not eradicate the virus. He explained that the persistence of HIV reservoirs means that the virus can rebound if ART is stopped, making lifelong treatment necessary. Despite advancements in ART, issues such as medication adherence, side effects, and access to care remain significant challenges.

Additionally, Kennedy pointed out that ART does not fully address the social stigma and mental health challenges faced by PLHIV. He advocated for a cure as a way to not only improve health outcomes but also to improve the quality of life for people living with HIV.

 HIV and Ageing: The "Elephant in the Room"

One of the key themes of Kennedy’s presentation was the intersection of HIV and ageing. He described the growing population of older adults living with HIV as a “visible elephant in the room” that needs more attention in both research and policy-making. With the advent of effective ART, PLHIV are living longer, but they are also facing new challenges related to ageing, including:

• Comorbidities: Older adults living with HIV are at increased risk for a range of other health conditions, such as cardiovascular disease, osteoporosis, and certain cancers, complicating their care.
• Immune System Ageing: HIV accelerates the ageing of the immune system, making older PLHIV more susceptible to infections and immune-related disorders.
• Cognitive Decline: Kennedy pointed out that ageing with HIV is associated with an increased risk of neurocognitive disorders, affecting quality of life and treatment adherence.
• Social and Psychological Challenges: Older PLHIV often face compounded stigma related to both HIV and ageing, leading to social isolation and mental health challenges.

Kennedy concluded by calling for more integrated care models that address both HIV management and the complexities of ageing. He stressed the need for policy changes and advocacy efforts that address the unique needs of older adults living with HIV.

 Academy Vision and Activities

In the final part of his presentation, Kennedy outlined the vision and structure of the Botswana Community HIV Cure Research Academy. The Academy is a PLHIV-led initiative focusing on integrating community perspectives with scientific research. Key activities include:

• Research Collaboration: The Academy will partner with researchers at the Botswana Harvard Health Partnership (BHP) to ensure that community voices are incorporated into HIV cure studies, providing input on study designs and recruitment strategies.
• Community Education and Awareness: The Academy will conduct educational campaigns aimed at raising awareness about HIV cure research among PLHIV and the broader community, helping to demystify the science and encourage greater community involvement.
• Advocacy: The Academy will lead efforts to ensure that PLHIV are represented in both national and global HIV cure research discussions and policy decisions. This will involve engaging with funders, policymakers, and other stakeholders to secure resources and support for HIV cure research.

Panel Discussion: Integrating Community and Science

Moderator: Ernest Moseki, Botswana Harvard Health Partnership
The panel discussion brought together experts from various sectors, including representatives from the Botswana Harvard Health Partnership, community advocates, and PLHIV members. The session, moderated by Ernest Moseki, focused on how integrating community perspectives can significantly enhance the outcomes of HIV cure research. The panellists emphasised the importance of collaboration between researchers and communities to ensure that research is not only scientifically sound but also relevant and responsive to the needs of those most affected by HIV.

Key Themes of the Discussion:

• Community Voices in Research:
  The panellists discussed how PLHIV, community advocates, and support groups can contribute valuable insights that can help shape HIV cure research. By involving communities early in the research process, scientists can ensure that their studies address real-world challenges faced by PLHIV, from treatment adherence to stigma and mental health issues. The inclusion of PLHIV helps researchers better understand the social, economic, and psychological barriers that affect HIV treatment and cure efforts.
• Building Trust:
  A recurring theme in the discussion was the importance of building trust between researchers and the community. The panellists highlighted that transparency and open communication are key to fostering trust. Community members need to be informed about the goals, risks, and potential outcomes of research. Ensuring that communities feel valued and respected can lead to greater participation in research and more effective partnerships between scientists and PLHIV.
• Cultural Relevance:
  The panellists also touched on the need for HIV cure research to be culturally relevant and sensitive to the local context. They emphasised that research strategies must consider local beliefs, practices, and challenges, especially in rural and marginalised communities. This can involve tailoring study designs to fit local conditions and engaging community leaders to build support for research initiatives.
• Challenges of Stigma:
  Stigma remains one of the most significant barriers to effective HIV treatment and cure research. The panellists discussed the role of stigma in discouraging PLHIV from participating in clinical trials or even seeking treatment. They advocated for more community education and awareness campaigns to address stigma and encourage openness about HIV status, which could increase participation in HIV cure studies.
• Collaborative Study Designs:
  The discussion emphasised that collaborative study designs—where PLHIV and researchers work together—are more likely to result in successful outcomes. Panellists encouraged researchers to involve community members in designing studies, deciding on recruitment strategies, and disseminating results. This collaboration can lead to studies that are not only scientifically rigorous but also grounded in the lived experiences of PLHIV.

 Interactive Session: Shaping Our Path Forward

This interactive session encouraged participants to provide feedback on the Academy’s goals and share ideas on how they could contribute to its activities. Participants emphasised the need for diverse representation in the Academy’s leadership, especially from rural and marginalised communities. They also suggested expanding the Academy’s educational outreach efforts and using local and social media platforms to raise awareness about HIV cure research.

 Closing Remarks and Acknowledgements

Dr Arnold Sejie of Boitekanelo College delivered the closing remarks, summarising the day’s insights and calling for continued community involvement in HIV cure research. He thanked all participants and organisers for their contributions and encouraged everyone to remain engaged with the Academy’s mission.

@KMupeli