World AIDS Day was founded in 1988 as the first global health day. Today, the connections between HIV and global health, particularly global health equity, are clearer than ever.

The successes of the global response to COVID were built largely on knowledge and networks created by AIDS research and advocacy. The failure to achieve anything approaching equity in the COVID response offers critical lessons for HIV, and for future pandemic preparedness and response.

Perhaps more than any previous World AIDS Day, this December 1 is about looking forward – to how the movement to end the AIDS pandemic can become a cornerstone of efforts to achieve a healthier and more equitable world. In that spirit, I am excited to share two important documents that will help guide AVAC into the future, and that many of you contributed to creating: our new Strategic Plan 2022-2026 and our Equity, Diversity, and Inclusion (EDI) Commitment.

These new roadmaps are the result of the most ambitious and inclusive planning process in AVAC’s 26-year history. Together, they will help direct our ongoing efforts to anticipate and respond to new complexities in HIV prevention, operationalize our commitment to social justice and global health equity, build more effective, mutually productive relationships with partners and increase the impact, responsiveness and sustainability of our work.

The Strategic Plan and EDI commitment were undertaken at a key point of inflection and opportunity for AVAC, and the field. HIV prevention research is accelerating, but targets are still being missed. COVID is speeding science, but significant gaps in access highlight the need for much smarter pandemic preparedness. And a global movement for social justice is demanding that we all reexamine critical questions of equity, including health equity.

Creating these plans has been a painstaking, but also enlightening and rewarding experience. We are indebted to the partners, staff and donors who contributed openly and honestly to make them possible, to AVAC’s EDI Committee and to Global Health Visions, a woman-owned and operated consulting organization that helped guide the strategic planning process.

As we look beyond World AIDS Day and into 2022, we also want to preview our upcoming AVAC Report 2021: Developing Options, Delivering Choices, which will look at the actions we are taking and those that as a field we all need to take to transform prevention “options” developed through research into prevention “choices” for people that can save lives and help end epidemics. This work is critical, and it is shared – just as we developed our strategic plan and EDI commitment in partnership with so many, so too will we move this work forward, together.

I hope you will enjoy reading these plans – and working with us to translate them into action. As always, we are sincerely interested in your thoughts, feedback and recommendations, and, especially, look forward to partnering with you in the future to realize our vision: a world without AIDS and with global health equity.

By Cathy Slack, head of the HIV AIDS Vaccines Ethics Group (HAVEG), a clinical psychologist and member of the Coalition to Accelerate and Support Prevention Research (CASPR); Abigail Wilkinson, project researcher for HAVEG focused on stakeholder engagement, research ethics committees and institutional review boards; Siyabonga Thabete, project researcher focused on social psychology, consent and stakeholder engagement.

Stakeholder engagement in HIV prevention trials still isn’t perfectly implemented or evaluated despite the apparent benefits and ethical justifications for it. This is where Research Ethics Committees (RECs) and researcher actions in the ethics review process might help.

There are a number of HIV prevention products available, however, it is crucial that new effective products are researched in clinical trials. New infections were 1.5million in 2020, far exceeding global targets to end the epidemic. We know new options are needed and must be made available to the people who need it most; and there are several trials in the pipeline. Now, HIV prevention trials are complicated and involve numerous roleplayers, all of whom have the power to alter the course of a trial in some way. By engaging key stakeholders in a meaningful way, those who conduct trials can help to mitigate some of the complexities and ensure better relationships between all roleplayers.

Stakeholder engagement is encouraged by numerous ethics guidelines — UNAIDS-AVAC GPP (2011), CIOMS (2016), and UNAIDS (2021). In our desk review of ethics guidance published in JIAS (Slack et al., 2018) we found guidance documents place a high value on stakeholder engagement. We looked at CIOMS (2016), WHO (2011), UNAIDS-AVAC GPP (2011) and UNAIDS (2012) — the review was conducted prior to the release of the updated guidelines. We found three core priorities and three core practices of engagement encouraged by ethics guidance. Namely engagement should be early and sustained, broad and inclusive (involving all those affected by a trial), responsive to context and dynamic over time, as well as being adequately planned, properly resourced and underpinned by a close understanding of the context (‘formative evaluation’).

The review of engagement by RECs is also explicitly encouraged by ethic guidance. That is, ethics guidance make clear that engagement should be on the RECs radar. However, in a desk review of documents from South African RECs (Wilkinson et al., 2021) we found that RECs are missing opportunities to do more to support good engagement. While we found that some REC documents (SOPs, application forms, renewal forms, policies ) did encourage sound engagement, e.g. broad and inclusive, many RECs documents fell short of promoting high-quality engagement. For example, several application forms only ask whether researchers have received permission from institutions to collect data at a site, which is a narrow form of engagement. Also, we found that REC documents’ position on engagement is not always consistent, and alignment on this issue would send a powerful message.

Together with partnersin the Coalition to Accelerate and Support Prevention Research (CASPR), HAVEG designed an online course to help highlight how best to support excellent engagement during ethics review (SETER). This free online certificate-generating course, called SETER (Strengthening Engagement Through Ethics Review), offers an interactive exploration of the ethical underpinning of stakeholder engagement and how both researchers and RECs can best address engagement during the ethics review process for clinical trials.

Also, we interviewed 28 experts involved in various aspects of HIV prevention research and engagement including advocates, researchers, REC members, Community Liaison Officers, and Community Advisory Board members who helped to paint a picture of current issues in the field. Interviewees recognised three distinct complexities which we have termed the “three Ts” — Tokenism, Toxicity (which should be avoided) and Tailoring (which should be promoted). (Wilkinson 2021). To address the issue of token engagement, researchers and RECs should ensure that engagement plans are faithful to ethics recommendations e.g. broad, inclusive. To address the issue of ‘toxic’ engagement researchers and RECs should consider whether engagement might be inadvertently harmful or “toxic” e.g. by reinforcing power inequalities or increasing the visibility of stigmatized groups. To address the issue of ‘tailoring’ researchers and RECs should ensure that the level of engagement is calibrated to things like level of risk to participants or the level of vulnerability of participants. More is needed to manage this last issue. RECs and researchers need metrics and better guidance to inform how the level of engagement should be tailored or calibrated according to study risks and other factors.

Despite its ethical importance, engagement remains complex and the ethics review of engagement has gaps to fill. Our work takes the conversation one step further, showing some actions we can take now (such as RECs examining submitted plans for engagement with ethical guidance in mind) and some that will take more time (such as ethics guidance offering more support for tailoring the level of engagement). In both cases, advocates will be essential because ethical guidance comes to life when our voices amplify its message and work for its success.

Key Resources

• Slack, C., Wilkinson, A., Salzwedel, J., & Ndebele, P. (2018). Strengthening stakeholder engagement through ethics review in biomedical HIV prevention trials: Opportunities and complexities. Journal of The International AIDS Society. 21(S7):e25172
• Wilkinson, A., Slack, C., Crews, C., Singh, N., Salzwedel, J., & Wassenaar, D. (2021). How can Research Ethics Committees help to strengthen stakeholder engagement in health research in South Africa? An evaluation of REC documents. South African Journal of Bioethics and Law, 14(1), 6-10. doi:10.7196/SAJBL.2021.v14i1.698
• Wilkinson, A., Slack, C., Thabethe, S., & Salzwedel (2021). “It’s almost as if stakeholder engagement is the annoying ‘have-to-do’: Recognizing ‘tokenism’ in stakeholder engagement – Perceptions of key role-players in HIV prevention. Poster at HIV Research For Prevention (R4P) (Virtual), 27 January – 4 February
• Strengthening Engagement Through Ethics Review (2020). See https://engage.avac.org

AVAC mourns the death of our very dear friend and colleague, Terry Mukuka, who died in late November.

Terry was truly a gentle giant—calm and caring, dedicated and passionate about human rights and community development, and incredibly funny and fun. His contributions to what we do at AVAC have been extraordinary, but more than that was how he worked—with each one of us, with each project, with each partner. He reminds us always that it is not only what we do, but how we do it that really matters.

Terry was AVAC’s first ever Program Manager for Grants Management, a key position at AVAC that required superior organization, coordination and management skills, diplomacy, patience, and a sense of humor. As our partners can testify, for 3.5 years Terry supremely filled this role as an exceptional grants manager and one of the kindest people we’ve ever worked with.

Terry came to AVAC in 2018 after having worked with national and international organizations including, American Jewish World Service, Yamba Malawi and Pan African Children’s Funds and the United Methodist Committee on Relief who are helping to improve the health and well-being of people around the world. He had extensive experience managing grants and in designing and implementing community development projects on key health and development issues including, human rights, women’s empowerment, youth development, sanitation/health, agriculture, and more.

Terry will be missed by all of us at AVAC, his wife Barbra, his children, his extended family and the many friends and colleagues whose lives he touched each and every day.

We posted stories and memories of Terry in an online board and we invite our community to join us in reflecting on his life so well lived. A fund has also been created to aide Terry’s family. If you wish to contribute, visit this GoFundMe page.

AVAC joins global HIV researches and advocates in mourning the loss of Dr. Scott Hammer, a Professor of Medicine and Epidemiology at Columbia University Irving Medical Center. Scott was a visionary researcher and scientist, a deeply caring physician and an incredibly kind person. He leaves a remarkable legacy and will be sorely missed.

The latest edition of Protecting Global Gains profiles how Nigeria pivoted during the pandemic to a community-centered approach to HIV testing that resulted in substantial increases in testing. This story, first profiled for the Global Fund Results Report 2021, serves as an example of a health program’s flexibility, resilience and unwavering tenacity in the face of a global pandemic.

In October 2020, UNAIDS reported on data showing that HIV testing has significantly decreased in most countries due to the COVID-19 pandemic safety protocols. Many countries where the Global Fund supports healthcare services have seen a decrease in HIV testing in this time—but not Nigeria. This story, Nigeria Faces Down COVID-19’s Impact on HIV Testing, highlights the innovative, community-centered effort to train community health workers to not only serve as contact tracers but conduct in-home tests for HIV and TB. These innovations both reverse the negative trends due to COVID-19 and provide strategies that will make these health systems more resilient.

Follow the Protecting Global Gains series on social media at @hivpxresearch, @theglobalfight, @Amref_Worldwide and #ProtectingGlobalGains, and consider amplifying these stories on your own social media. Advocates can read about Global Fund’s work to support countries, like Nigeria, to achieve epidemic control during the COVID-19 pandemic. Visit www.protectingglobalgains.org to learn more about how to take action.

Today, US Secretary of State Antony Blinken and fellow foreign ministers are participating in a meeting to make specific, time-bound commitments and take concrete steps to end the COVID-19 crisis and build back from this pandemic.

But will they actually address the fundamental issues of COVID vaccine access and agree to invest in global manufacturing to address this pandemic and prepare better for the future?

These are exactly the issues that award-winning journalist Stephanie Nolen raised on our November 4th webinar, Reality check about “global” COVID-19 vaccine production. You can catch the conversation with Nolen in this recording, where she explores what she learned reporting her New York Times story, Here’s Why Developing Countries Can Make mRNA COVID Vaccines, and answers advocates’ questions. She was joined by Public’s Citizen’s Zain Rizvi in discussions about the powerful lessons learned from the fight for global equity in HIV treatment, and why the world cannot donate its way to ending the COVID-19 pandemic.

Nolen lays out the arguments made by the pharmaceutical industry and details how each argument is answered from experts in the field. It’s a picture of a future where strong vaccine manufacturing capacity, established in every region of the world, supports vaccine equity, and a resilient global health system that is prepared for the next pandemic.

At AVAC, we consider the discussion essential listening, or reading.

Quick links to these and related resources

• Webinar recording: Reality check about “global” COVID-19 vaccine production
• Breaking the Bottlenecks to COVID-19 Access infographic
• AVAC’s recording archive of webinars on COVID-19

Award-winning journalist Stephanie Nolen joined AVAC on Thursday to discuss the findings and backstory of her recent New York Times investigation,”Here’s Why Developing Countries Can Make mRNA COVID Vaccines.”

In this webinar, Stephanie, AVAC and partners explored where we are in the fight to bring COVID mRNA vaccine manufacturing to the places where doses are needed most, in countries where vaccine access has been grievously stalled. We talked through her report and the parallels with HIV.

Watch the recording of Reality check about “global” COVID-19 vaccine production.

Stephanie Nolen covers global health for the New York Times. She has reported on public health, economic development and humanitarian crises from more than 80 countries around the world. She has a long history as an HIV journalist and is the author of several books, including “28 Stories of AIDS in Africa”.