By Alice Kayongo, public health and human rights advocate, and senior policy advisor for WACI Health.

For over a decade, advocates for HIV prevention research have called for stronger political will and global solidarity towards a preventive vaccine and other prevention tools for HIV. COVID-19 has demonstrated how political will can help accelerate scientific breakthroughs. The COVID-19 vaccine is a case in point: science, political will and global solidarity came together to find a tool that has helped protect millions, and could protect billions if inequitable access issues are addressed.

As advocates call for action, it’s clear that greater domestic investment in health research and development (R&D) will be critical for improving health, equity and development. However, despite a disproportionately high burden of disease, Africa still lags in health R&D to address the region’s health challenges. We attribute this in large part to inadequate funding among other factors.

A recent publication, ‘Situation analysis report on the mobilization of resources for health research and development’, commissioned by Africa Free of New HIV Infections (AfNHi), WACI Health and Coalition to Accelerate & Support Prevention Research (CASPR), examines the financing problem of health R&D in Africa. It reports on progress but finds efforts have fallen gravely short of the target, with serious implications. This report comes at an opportune time, as COVID-19 puts a spotlight on the importance of health R&D and the need for greater domestic leadership and international commitment.

Accounting for over 15 percent of the world’s population, the continent bears 25 percent of the burden of disease at the global level, produces only 2 percent of the world’s research and only accounts for 1.3 percent of publications on global health. As explored in the report, regional commitments have been made to increase government spending on health R&D. For instance, the 2008 Bamako declaration calls on African governments to allocate at least 2 percent of budgets of ministries of health to research. Similarly, the 2008 Algiers Declaration calls on African governments to invest at least 2 percent of their national health expenditures and at least 5 percent of their external aid in projects and programs that build capacity and advance health research. However, despite such commitments, such investment remains gravely low in Africa.

Source: Simpkins (2019); Analysis by AfNHi Consultant

Based on the map above, domestic funding is inadequate for sustained and impactful research in health as most governments are investing less than 2 percent of their GDP, yet several health problems demand more investigation, arising from specific conditions, such as HIV, Malaria, challenges to maternal health, that are so widespread that they undermine public health at large.

Financing for health, especially R&D, relies heavily on foreign aid. This presents opportunities and challenges. Foreign aid brings skills, technology transfer, infrastructure for research and other resources. But the challenges are important to consider. Foreign aid can put funder research priorities ahead of host country priorities. Foreign aid can also be tied to a lack of local ownership, exploitative research partnerships, focus on publications vs. investing in the capacity for sustained research and development, and undermining the independence and success of innovative domestic research institutions. In some countries where governments have committed significant investment for health R&D, it’s often not financial, and often not useful. For financial investments, for instance, in 2017, the SciDev.Net reported that Uganda committed 30 billion Uganda Shillings (about USD 9Million) to support innovation and technology, and the first round of grants would be given mostly to individuals who had products in place. But critical voices point out that giving these funds to individuals rather than institutions undermine efforts to develop a sustainable ecosystem for innovation, one that supports individuals and a system that nurtures them.

Some of the sharpest criticism among African scientists, ministers, advocates and other observers say research in Africa too often can be experienced by African scientists as extractive, a ‘slave model’, where foreign funders reap the benefit of African intellectual labour but leave behind few benefits for ordinary Africans. Researchers are sustained by their own governments to continue their work with salaries and operational costs. Those same researchers advance proposals to foreign donors, often in consortia, and may individually benefit with publications, promotion, peer recognition and presentations at international conferences. But the true impact of their labour—the field advances with new tools, products and interventions—is not felt at home. An African scientist quoted in Scidev.net noted “Maybe we should have an incentive system structured differently in research institutions. An innovation is a public good with commercial value and industrial application, but a publication has knowledge value. When we reach an extent where they will use commercial output from innovators other than publication, we shall see more innovations come out.”

The Situation analysis report on the mobilization of resources for health research and development finds that Africa has made progress towards financing for health R&D, especially in the past decade, but many African countries still have significant gaps to address. Of all the sampled countries, the report showed that Malawi had the highest proportion allocated to research in general at 1.06 percent of GDP, while Kenya had 0.79 percent, Rwanda 0.66 percent and Eswatini 0.27 percent. The report has clear recommendations – for policy makers and civil society organizations to address the challenges.

The reports findings and recommendations call for:

a. Increased government funding for health and research, which signals government leadership and commitment, and encourages greater investment from domestic partners
b. Strengthening existing laws, regulations and policies and enacting new ones where needed to guide research
c. Increase the influence of research on government policy by locating research closer to political power and aligning research priorities between researchers and governments
d. Governments must lead and facilitate collaboration between government and the private sector to fund and conduct contextually relevant health research
e. Research in Africa must prioritize benefits to Africans in research and development Incorporate robust accountability structures for efficient use of research resources
f. Advocating collectively for an enabling democratic environment for effective research
g. Strengthen cross-sectoral partnerships among CSOs to advocate for health research and development
h. Strengthen the advocacy capacity of CSOs in health financing and health research

The following are key strategies that advocates should consider:

1. Demonstrate to governments how specific investments are cost-effective, bring health and socioeconomic benefits, and enable broader governmental objectives
2. Explains the consequences of not investing in health R&D, including a slowing economy, reluctance of business and funder entities to invest, a “brain drain” of science and medical professionals, and cascading losses of the R&D benefits to other countries
3. Choose a collaborative approach to ensure that key government officials and policymakers view advocates as assets, partners and problem solvers with whom relationships can be formed towards the realization of health objectives and the mobilization of resources
4. Partner with experts in disciplines such as economics, public finance, business and international development for the strongest possible advocacy for health R&D
5. Strengthen capacity to interrogate and track government funding and actual expenditure on health R&D

The report concludes that governments, among others, in low and middle income countries (LMICs) must prioritize and ensure budgetary allocations to health R&D, beyond the non-financial investments. Budget commitments have the potential to attract additional investments by partners and demonstrate political will. It’s time to champion this work! Join us for the Biomedical HIV Prevention Forum (BHFP) Pre-Conference at ICASA, scheduled for December 6, 2021 at 12:25pm SAST as we dive deep into this conversation and draw collective action points.

The biennial International Conference on AIDS and Sexually Transmitted Infections in Africa, ICASA, will take place this year December 6 – 11, in Durban South Africa and virtually (register here). ICASA launched over two decades ago to offer an African platform for leaders, scientists, activists and community to frame the challenges, track the science and push innovation in the HIV response. As COVID-19 continues to ravage communities, disrupt the response to HIV and force the world to confront profound inequity in global health, partners across the field have been dogged in their advocacy to lose no ground to COVID-19, adapt and demand solutions that work.

“The world has missed crucial targets for HIV prevention, and COVID-19 has further undermined hard-won progress. But the unparalleled innovation of these last 20 months have offered new models of collaboration, adaptation and investment. We are coming together now to exchange what we’ve learned and embolden each other. Because the time to act is now, when the entire world has been forced to see the impact of inequity, and that no one is safe until everyone is safe.” Rosemary Mburu, WACI Health executive director, CASPR partner and featured speaker at the Biomedical HIV Prevention Forum and other sessions at ICASA.

ICASA 2021 will feature a host of events, and AVAC and partners will be there exploring in depth where and how the response to the dual pandemics must dismantle the structural barriers to health faced by key populations, intensify demands for robust domestic and global funding for health, accelerate and expand access to prevention options, integrate HIV services with sexual and reproductive health, and more. Scroll down for a roadmap to ICASA’s prevention sessions, and details on sessions and events that we don’t want to miss.

• Go to our dedicated page for ICASA 2021 for updates on this schedule
• Download the ICASA Prevention Roadmap
• Follow the conversation on Twitter

Sessions of Interest

Sunday, December 5

Youth Pre-conference
09:00-16:00 SAST / 11:00-15:00 EAT / 02:00-09:00 ET
Open to all young people, join this event for workshops, break-out sessions and discussions on youth leadership, resilience and innovation toward the 2030 targets for ending the epidemic. Organized by Y+. Free and open to all.
Register here.

Gay, Bi-sexual and Men who have Sex with Men (GBMSM) preconference
11:00-16:30 SAST / 12:00-17:30 EAT / 04:00-09:30 ET
Join health and human rights advocates at this combination virtual and in-person event to take stock of the status of advocacy and activism, kickstart a conversation on sustainability for GBMSM programming across Africa, and define aspirations for health and rights going forward. Organized by Black Gay Men Connect, PAI, UKPC, Fierté Afrique Francophone, APHA, GALZ, GHPN Ke and AVAC. Free and open to all.
Register here.

Monday, December 6

PSI: Realizing the Benefits of U=U in National HIV Programs
10:40-11:25 SAST / 11:40-12:25 EAT / 03:40-04:25 ET
This session explores the prevention impact of supporting people living with HIV to remain virally suppressed, and the importance of programming that understands that undetectable HIV is untransmissible, U=U.

Examining How National Laws/Policies Impact the Global AIDS Response
11:35-12:15 SAST / 12:35-13:15 EAT / 04:35-05:15 ET
This special session will draw from insights and analysis from the HIV Policy Lab and feature a panel discussion on the intersection of policy, equity and ending the epidemic.

The Biomedical HIV Prevention Forum pre-conference
12:25-15:00 SAST / 13:25-16:00 EAT / 05:25-08:00 ET
This event, available for virtual participation, will bring together front-line providers, advocates, community, researchers and policy makers to frame what’s needed now for HIV prevention in Africa, in the context of COVID-19. Discussions will include updates on scientific advances, and how to strengthen African-led advocacy for prevention research. The gathering will also put a spotlight on advocacy to beef up domestic spending on health systems and research in Africa.
Register here.

PROMISE Collaboration: Launching PrEP-it 2.0
13:30-14:05 SAST / 14:30-15:05 EAT / 06:30-07:05 ET
This satellite symposia explores an innovative online platform for planning, monitoring and evaluating PrEP agents. This session will showcase how the platform has been used to set evidence-based targets, project costs and estimate impact.

Tuesday, December 7

No Prevention, No End. Taking the lead in implement the 2025 HIV Roadmap
10:42-11:27 SAST / 11:42-12:27 EAT / 03:42-04:27 ET
This session looks at the recommendations from the Global HIV Prevention Coalitions Working Group to reach key goals by 2025. Discussion will also focus on the role of political and community leadership and successful practices in the HIV response.

Resource Mobilization for HIV, TB, Malaria and Pandemic Preparedness
13:30-15:30 SAST / 14:30-16:30 EAT / 06:30-08:30 ET
For those attending ICASA in person, this event looks at factors shaping health financing, and extends the ongoing conversation on increasing domestic spending on the health sector. At the Southern Sun Elangeni & Maharani, sponsored by the GFAN Africa and the Global Fund.

Wednesday, December 8

Providing Alternative HIV Prevention Tools For High-risk Populations in Eastern Africa. Dapivirine Ring Could be a Game Changer
10:30-11:15 SAST / 11:30-12:15 EAT / 03:30-04:15 ET
A look at the potential impact of this new addition to the HIV prevention toolbox and next steps to make it accessible.

The Dual Prevention Pill (DPP): What advocates need and want to know
17:00-18:00 SAST / 18:00-19:00 EAT / 10:00-11:00 ET
Join AVAC and AYARHEP for a discussion on the Dual Prevention Pill (DPP), a combination pill in development that prevents HIV and pregnancy. If approved, it would be the first multipurpose prevention technology (MPT) available since male and female condoms. What information on the DPP do you need to inform your advocacy? We hope you’ll join the discussion!

Thursday, December 9

Biomedical HIV prevention for men in a time of a pandemic: Amplifying our gains and increasing in scale, impact, and sustainability of Voluntary Medical Male Circumcision (VMMC) beyond 2021
13:33-14:18 SAST / 14:33-15:18 EAT / 06:33-07:18 ET
This satellite session looks at the impact of VMMC and how to sustain it. A panel discussion will focus on action steps needed from implementers, policy makers, civil society and other decision-makers.

Conducting 2nd Generation surveillance during a pandemic in Nigeria: lessons learnt
13:33-14:18 SAST / 14:33-15:18 EAT / 06:33-07:18 ET
Nigeria’s efforts to maintain HIV services during COVID-19 offer key lessons for the field.

What’s new from WHO: “Guidelines for validation of elimination of mother to child/vertical transmission of HIV, STI and Hepatitis
14:30-15:15 SAST / 15:30-16:15 EAT / 07:00-08:15 ET
Updates on the WHO guidelines and their implications for HIV prevention and HIV services.

The highlights above represent an extraordinary body of work that is urgently needed right now. And this is just a small sample. To follow happenings and discussions from ICASA watch this space, and follow #ICASA2021 on Twitter.

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.