Gift Trapence

Gift is a human rights defender. He is the director of the Centre for the Development of People (CEDEP) and the chairperson of Human Rights Defenders Coalition in Malawi. He has worked extensively on issues of sexual health concerning men who have sex with men (MSM) since 2005. He contributed to the pioneering of the first HIV sero-prevalence study among the MSM community in Malawi.

Fellowship Focus
Gift explored knowledge, attitudes, perceptions and willingness of African MSM towards circumcision as an HIV prevention strategy in Malawi. Using the information gathered from these discussions, he developed communication materials that provided adequate information to MSM on voluntary medical male circumcision for HIV prevention and helped to guide engagement with researchers and policy makers on implementing such studies for the benefit of African MSM and on HIV prevention research broadly.

In Their Own Words
We must fight to ensure that vulnerable populations have access to HIV and other health-related services. I’m invested in protecting every citizen’s human rights and will not rest until that is achieved.

Gift’s Media Advocacy:

Eric Mcheka

Eric coordinates the multi-country COMPASS Project in Malawi. At the time of his Fellowship project, Eric had more than 12 years’ experience in development and communication, with a specific focus on HIV/AIDS and disability. This work included the development of the first ever television program on HIV-positive living, Tisawasale, targeting persons with hearing impairment. Later, Eric joined NAPHAM, where he was in charge of training, monitoring and evaluation and resource mobilization.

Fellowship Focus
Eric called attention to the need for accelerated scale-up of voluntary medical male circumcision (VMMC) in Malawi. He engaged key stakeholders in government, media and civil society to push for accelerated scale-up. In particular, he trained journalists, rallied civil society to prioritize VMMC advocacy in their work and engaged lawmakers to build demand for VMMC and ensure that it is incorporated into Malawi’s national HIV prevention strategy.

In Their Own Words
VMMC is a one-off, low cost procedure that needs to be brought to scale in Malawi, just like we did with PMTCT.

Eric’s Media Advocacy

Khanyisa Dunjwa

Khanyisa founded and currently leads PUPA, a grassroots organisation, and also sits on the Eastern Cape Provincial Council on AIDS. She worked as a peer educator on sexual health and rights and has advocated for disability rights. After joining the Networking HIV/AIDS Community of South Africa (NACOSA), she pursued her interests through leadership roles in the NGO sector and the Women’s Sector of the South African National AIDS Council (SANAC).

Fellowship Focus
Khanyisa advocated for safer approaches to male circumcision in traditionally circumcising communities in the Eastern Cape Province of South Africa. She engaged local leaders and government officials in dialogues about safe male circumcision and piloted a program to educate adolescent boys about their options, safety during the traditional circumcision process and how to protect themselves from HIV. A key focus throughout her work was on involving women—especially mothers—in conversations about male circumcision to ensure their meaningful engagement. Khanyisa also frequently engaged with South African and international media to help spread accurate information about both traditional and medical male circumcision.

In Their Own Words
We need to mean it when we say we want to involve communities at the grassroots level. Policies are good, but when they fail, communities, women and girls bear the brunt.

Khanyisa’s Media Advocacy:

Josephine Kamarebe

At the time of her Fellowship project, Josephine was a program officer at HDI, where she was in charge of advocacy and policy monitoring. She has been involved in various advocacy campaigns for the decriminalization of LGBTI people, sex workers and abortion and has advocated for health and development for potter communities. Prior to her Fellowship year, she coordinated the SHARE project, which aims to empower youths with knowledge about sexual and reproductive health.

Fellowship Focus
Josephine helped create a favorable environment for the rollout of PrEP among the most at-risk populations. She worked with policy makers to include PrEP in the national guidelines. She built a civil society coalition to facilitate demands to policy makers and other key stakeholders. In addition to PrEP, Josephine advocated for treatment as prevention in the country’s national strategic plan and monitored VMMC rollout.

In Their Own Words
For those working with the key populations, it is better to empower them to speak on their own. It gives an added value and augments the policy and decision-makers to act accordingly.

Clever Chilende

Clever is a Programs Manager with the Treatment Advocacy and Literacy Campaign (TALC). He joined TALC as a volunteer in 2008 after spending many years as a banker and private business consultant, through which he developed an interest in advocacy. Before his Fellow’s project, he worked for several years on campaigns to end ARV shortages in Lusaka and to establish an ART center in Chazanga, a densely populated and rural area in Zambia’s Eastern Province.

Fellowship Focus
Clever’s project informed national VMMC policy, and he coordinated a project in budget monitoring and expenditure tracking in the health sector. He also worked to increase community participation in the health budgeting process and was directly involved in drafting Zambia’s Country Operating Plan for PEPFAR. He joined key national working groups and formed a civil society coalition on HIV prevention through which he influenced policy and programming.

In Their Own Words
I now realize that in order to be more effective in advocacy, there is a need to identify advocacy spaces and find your way to the decision-making table. At the same time, I have learned that to be effective in advocacy you need to build a strong coalition. This is because advocacy is in numbers.

Leader Kanyiki

Leader founded and currently leads an organization called “Batho Pele Coalition”, focusing on counseling and support for young people and their families around issues such as substance abuse. He is also a consultant with Africa Unite’s youth programming. Before becoming a Fellow, Leader focused on issues of child sexual exploitation through the Sonke Gender Justice Network. His advocacy work began as a university student body president and later as President of the Provincial Student Union in the Democratic Republic of the Congo (DRC), his homeland. As part of a team of researchers, Leader investigated torture and kidnapping and monitored national elections. After becoming a registered nurse, he began to focus on HIV/AIDS, and in 2007, he moved to South Africa, where he has worked for several organizations, including Planned Parenthood Association Whole World Women Association and Save a Soul Brigade.

Fellowship Focus
In his Advocacy Fellowship, Leader advanced the national discussion on VMMC within South Africa, promoted the importance of integrating gender equality education and supported the South African National AIDS Council’s efforts to roll out VMMC among young South African men. He worked with the media to provide a platform for medical professionals, researchers and activists to debate and elaborate on the new HIV prevention method.

Simon K’Ondiek

Simon is a public health educator/advocate with considerable experience in health research, advocacy and community engagement in both domestic and international settings. He is a researcher and community organizer with a strong focus on improving the quality of life through health communication and cooperation with key populations and local communities. His current work in implementation science seeks to ensure that affected communities are actively engaged in and inform HIV prevention research.

Fellowship Focus
Simon documented issues/challenges arising in VMMC rollout in Nyanza Province in Kenya through a photography documentary focused on addressing knowledge, attitudes and gaps in scale-up efforts. Simon worked with community members to take photos and conduct interviews with others. He built an advocacy task force to work within Nyanza to monitor the rollout of VMMC in Nyanza district.

In Their Own Words
There’s a need for woman-controlled methods for HIV prevention, specifically for adolescent girls and young women and key populations to lower and eventually eliminate new HIV infections. We must all do everything we can to ensure that those interventions are developed and that they are put in the hands of those who need them the most.

Current trends for investment in HIV prevention R&D by technology

PrEP’s Time has Come

Early planning for PrEP investment in PEPFAR countries is the next critical step for this intervention to fulfill its promise and bend the prevention curve of the epidemic in PEPFAR supported countries.

The President’s Emergency Plan for AIDS Relief (PEPFAR) has played a fundamental and unique role in bringing down the number of global deaths from AIDS and advancing global health, since it launched in 2003. But when it comes to preventing HIV, not just treating it, the world remains in crisis. Despite important declines in HIV rates in Eastern and Southern Africa, in others HIV is on the rise. A global health target to bring down new cases of HIV to 500,000 in 2020 was missed–by a lot, throwing off the global effort to end the epidemic by 2030 unless drastic action is taken now.

PEPFAR has an unparalleled ability to marshal data and support the development of effective programs, as it has done for treatment in countries hard hit by HIV. Today, PEPFAR must apply this capacity to HIV prevention in new and expanded ways. Some of the most crucial decisions about PEPFAR’s role in delivering prevention are too often overshadowed by the critical center-stage effort to achieve the 2025 treatment targets and reduce unacceptably high AIDS deaths in many countries. But some less known, behind-the-scenes decisions are also truly vital. One such issue involves PEPFAR budget codes that few may appreciate and love but have an outsized impact on whether the right commitments are made, and prevention reaches those who need it most. Currently, PEPFAR utilizes 19 budget codes for specific areas of HIV programming including testing, treatment, and prevention, including voluntary male medical circumcision.

PEPFAR’s budgeting approach to oral PrEP is a prime example of how HIV prevention must evolve and how PEPFAR’s long standing commitment to transparency can help lead the way. Oral PrEP is a daily pill that can be taken to prevent HIV. Despite its outstanding efficacy, not one of the budget codes PEPFAR uses for HIV programming tracks spending on PrEP. PrEP expenditures are only identified after they are allocated during the annual Country Operating Plan (COP) process used to develop individual country plans. Country programs designing prevention programming, and most importantly civil society advocating for PrEP as part of the COP process, don’t have a clear budget line as COP plans develop to measure and advocate against. As a result, PrEP programming, although a priority for PEPFAR, can sometimes get lost in the shuffle of COP planning. A budget code provides a benchmark to plan against and cements a program as a priority for PEPFAR.

The story of voluntary medical male circumcision (VMMC) rollout highlights the difference a dedicated budget can make. After the WHO and UNAIDS recommended VMMC for HIV prevention 2007, PEPFAR dedicated funds for countries to scale it up, and tracked the effort with an individual budget code. VMMC has since become a core component of prevention programs in PEPFAR supported countries. Investments in VMMC, totaling more than $1.5 billion according to 2017 information, are used for equipment, supplies, monitoring, evaluation, training and reporting. Since 2007, VMMC underwent a scale-up of historic proportions, reaching 15 million people, and contributing to lowering incidence in those countries. The budget code entailed more than funding and services, it incorporated planning, tracking, accountability, and impact. As the figure below suggests, the experience of PrEP roll-out now almost a decade after FDA approval without a designated budget code has been much slower.

PEPFAR’s track record in implementing HIV programs is historic. The program is credited with preventing infection in nearly 3 million babies, providing treatment to more than 17 million people who live with HIV, providing testing to 50 million people, and training 300,000 thousand new health workers. To finally end the epidemic, this same capacity can and must be brought to bear in prevention. PEPFAR’s strong call for programs to include oral PrEP and setting an overall goal of serving 1 million people with PrEP in 2021, become more difficult targets to aim at with vital planning tools missing. PEPFAR’s experience with VMMC taught us that establishing a designated budget code signals that a given program or product is a priority. PEPFAR supported countries are readying now to plan for COP22, to begin October 1, 2022. Getting a budget code for PrEP approved for COP22 would be an important step in planning for PrEP programs so that targets are met, and funding can succeed.

Ten years of effort to roll out PrEP has brought powerful lessons. The field has learned about complex barriers that inhibit HIV prevention. Stigma and economic hurdles put HIV prevention, such as PrEP, beyond reach for the millions who need it. Overcoming these forces will depend on critical investments that must be monitored for effectiveness. These include peer-led adherence support, marketing strategies to understand who must be reached and how to reach them, public campaigns to generate demand, reliable supply chains, specialized training for providers, and integrating HIV prevention with sexual and reproductive health services. Funding this full spectrum of support depends on clear dedicated budgets. The tools planners, advocates, policy makers and programmers need to be in place to double down on what works in HIV prevention, and, finally, end the epidemic.

New Report: HIV Prevention R&D funding drops again

Today, we and partners are proud to release the annual HIV Prevention Research and Development Investments Report, with important findings for our collective advocacy. The report reveals a growing mismatch between the current promise of HIV prevention R&D, and continuing declines in the funding available. This decline affects both funding for research on new interventions and funding to expand access to existing prevention tools. The new report is based on outreach to 215 funders of HIV prevention R&D in the public, philanthropic and commercial sectors and includes 2020 funding data.

The latest data shows funding for HIV prevention R&D dropped by US$54 million (4.4 percent) in 2020. This second consecutive annual decrease is part of an eight-year trend of flat or declining funding for HIV prevention R&D.

The report also finds that financial support for HIV prevention R&D is almost entirely dependent on public sector funders, notably from the United States, and on one key United States-based philanthropic funder, the Bill & Melinda Gates Foundation. Commercial sector funding, already extremely low, dropped again in this year’s survey.

“These concerning trends in funding come at a promising but very demanding moment in efforts to control the pandemic,” said Mitchell Warren, executive director of AVAC, which coordinates the Resource Working Group with the International AIDS Vaccine Initiative (IAVI) and the Joint United Nations Programme on HIV/AIDS (UNAIDS). “Funding is declining just as the field confronts a new generation of opportunities and challenges.”

This high stakes environment includes: new products readying for introduction, such as injectable cabotegravir for PrEP and the Dapivirine Vaginal Ring; international support for ambitious new global targets for ending the epidemic; initial proof of concept of antibody-based prevention; and urgently needed new thinking for HIV vaccine development as recent trials have experienced setbacks and new technologies such as mRNA succeed against COVID-19.

Key findings from the report include:

HIV prevention R&D is highly overdependent on a few key funders, and much of the world is not contributing at the levels seen in prior years:

  • HIV prevention R&D funding relies almost exclusively on the public sector, particularly the US public sector. The trend toward an overdependence on a small number of large investors, which the Working Group has surfaced and cautioned against in the past, intensified further in 2020.
    • Globally, the public sector accounts for 86 percent of prevention R&D funding, with 92 percent of that coming from the US public sector.
    • European public sector investments represent only 7 percent of the global total. While European public sector investment increased by 57 percent in 2020, it is still barely half of the US$124 million the European public sector contributed in 2009.
    • The entire rest of the world accounted for only US$14 million, or just 1 percent of total public sector funding.
  • Philanthropic funding, consisting almost exclusively of funding from the Bill & Melinda Gates Foundation, declined 20 percent in 2020 to US$127 million or 12 percent of the total global investment.
  • Reported commercial sector support for HIV prevention R&D, already the lowest segment of investment, fell by 55 percent to US$31 million, or just 3 percent of the total, in 2020. While total commercial investment may be underreported, trends over time from the data collected show commercial sector investments is, by far, the smallest piece of the funding pie for HIV prevention R&D.

Funding dropped in 2020 across a number of key segments, including:

Preventive vaccine R&D: With two large-scale HIV vaccine trials underway, and dozens of new approaches under investigation, funding for preventive HIV vaccine R&D decreased by 5.5 percent or US$46 million in 2020 to US$802 million. While different European countries have increased or decreased their investments, overall European public sector investment in HIV vaccine R&D decreased 31 percent in 2020, to US$48 million.

R&D for PrEP, including pills, implants, injections: While uptake of oral PrEP grew substantially in 2020, and multiple recent research studies have demonstrated the potential impact of a range of PrEP options including long-acting injections, pills and implants, global investment in PrEP R&D declined 2 percent in 2020 to US$107 million. While US public sector donors increased funding for PrEP R&D by 5 percent, and commercial sector investment increased by 21 percent to US$24 million, neither was enough to overcome a 42 percent decline in funding from the philanthropic sector.

Voluntary Medical Male Circumcision (VMMC): As a number of studies affirmed the efficacy of VMMC over a decade ago, funding in the field is focused on implementation science, behavioral studies and advocacy and policy, each of which is vital to extending the reach and impact of this highly effective prevention tool. Yet investment in VMMC decreased by 37 percent to just US$6 million in 2020, almost all of which came from a single donor, the Bill & Melinda Gates Foundation.

Preventing vertical transmission: Prevention of mother-to-child transmission of HIV (PMTCT) remains a key prevention priority, but funding for PMTCT R&D decreased by 29 percent in 2020, from US$35 million to US$25 million. The decline is attributed to the loss of the Bill & Melinda Gates Foundation from the list of PMTCT R&D funders, and to decreases in funding from public donors. US public sector funding for PMTCT R&D fell 22 percent to US$22 million in 2020. European funding also fell more than 60 percent, from US$3.4 million in 2019 to US$1.3 million in 2020.

Only two areas of prevention R&D funding showed small increases in funding, including:

Treatment as Prevention (TasP): Long neglected in HIV prevention investment, funding for treatment as prevention (TasP) R&D increased from $1.7million to US$9 million in 2020. The increase came from philanthropy, notably the Bill & Melinda Gates Foundation (US$5 million) and the Wellcome Trust (US$1 million).

While TasP R&D funding is small overall, this increase is a hopeful sign that TasP may once again receive its appropriate focus as priority for HIV prevention research.

Microbicides: After multiple years of decline, investment in microbicide R&D registered a very small increase (0.4 percent or US$0.6 million) to US$145 million in 2020. Concerningly, there is even less diversity in microbicide funding than in HIV prevention R&D overall, with the public sector providing 99 percent of microbicide R&D resources.

While this tiny increase is a hopeful sign, it does not match the scope of the promise of microbicides. One key product, the Dapivirine Vaginal Ring, is now recommended by the WHO as an additional HIV prevention option. In addition, a range of promising microbicide strategies are under investigation. One, a 90-day dual-purpose vaginal ring designed to confer both contraceptive and HIV protection, was found to be effective in early testing.

This is the 16th annual report from the Resource Tracking for HIV Prevention Research & Development Working Group. Go to HIVResourceTracking.org to explore the key findings, funding trends, and previous reports in depth and follow the conversation on Twitter #HIVResearchFunding.