Understanding HIV Prevention in High-Risk Adolescent Girls and Young Women in Two South African Provinces

AVAC’s Anabel Gomez and Shawn Malone have contributed a chapter, “Understanding HIV prevention in high-risk adolescent girls and young women in two South African provinces”, in the 22nd edition of the South African Health Review (SAHR).

These findings are part of a research project Breaking the Cycle of Transmission, conducted under AVAC and CHAI’s HIV Prevention Market Manager (PMM). Funded by the Bill & Melinda Gates Foundation, PMM is applying behavioral research and human-centered design to better understand and reach young women in South Africa with effective HIV prevention.

Read the full article.

For more information:

Index Testing: Advocates call for action

This update contains background information and an action alert on index testing. While this approach to HIV testing (see below for a definition) has potential benefits for individuals and communities when it is done ethically, with consent and without coercion, it can also be aggressively implemented in ways that can cause harm to individuals, undermine their rights to consent, privacy, safety and confidentiality, and can erode the trust of communities with health care providers.

Download an FAQ with background and opportunities for advocates to engage.

This is a rapidly evolving area of discussion with the PEPFAR Office of the Global AIDS Coordinator (OGAC), country teams, CDC, USAID and other partners. For activists and advocates attending PEPFAR in-country retreats—here are some top-line concerns and demands to consider, discuss and push for:

  • All index testing programs should be immediately paused while risk mitigation and mediation efforts are put in place. Civil society rejects any PEPFAR guidance that only key populations (KP) programs need to deal with this issue or that index testing is only halted for members of KPs. Many key populations test in general population health facilities where disclosing their partners may risk discrimination and violence. Cisgender women and adolescent girls and young women (AGYW) face equally high risk of adverse events related to index testing. Their needs will not be met by KP-specific interventions.
  • Targets that set a percent of HIV-positive individuals that must be identified via index testing cannot be part of Country Operational Plans (COPs) for 2020. These targets apply pressure to programs and implementing partners, and send the message that the target matters more than the quality of service and the rights of patients. Moreover, such targets can’t be set while index testing is paused and remediation is underway.
  • Civil society must be involved in the development of the certification processes for restarting index testing and in the implementation of monitoring. Civil society partnership in providing support and monitoring is needed on an ongoing basis and should be a part of COP2020 budgeting for index testing programs.

Please reach out with questions, contact us if you have reports of harm, and join us in action.

New Episode of Px Pulse!: AVAC’s call for new targets and more in 2020

A new episode of our Px Pulse podcast is ready for download!

2020 Global Targets for Prevention Will Not Be Met: Now What? In this episode, hear about AVAC’s answers to this question in our analysis of the state of the field laid out in AVAC’s annual report.

With unmet UNAIDS “Fast-Track” targets for ending the epidemic now a reality, the field faces the sobering truth that we’ve been striving towards the 90-90-90 treatment targets without the same enthusiasm, focus and commitment to primary prevention targets.

AVAC’s Emily Bass and lead author of our repot Now What? joins this episode of Px Pulse to talk about AVAC’s blueprint for course correcting—bold leadership, smart target-setting for HIV prevention research and implementation, and multilayered prevention programs that are centered around people. She explains why the epidemic needs a sustained response and how leaders from the highest level down to the grassroots can demand accountability and reject a “business as usual” approach.

For the full podcast episode, highlights and resources, visit avac.org/px-pulse. And subscribe on Apple Podcasts, Spotify or wherever you get your podcasts!

Once More Unto the Breach

Matthew is the Director of US Policy & Advocacy at HealthGAP. He is also community co-chair of the Microbicide Trials Network, member of the Vaccine Advocacy Resource Group (VARG), Board of Directors member for the AIDS Treatment Activist Coalition (ATAC) and a member of AVAC’s PxROAR United States program.

For 30 years, everyone fighting to defeat HIV put hope in being the last generation impacted by HIV. This hope kept those of us from key populations fighting, kept us moving and kept us working to save ourselves and our communities. We believed that with bold action and resolve we could make real something that has only been seen through the lens of mathematical models and hypothetical propositions. And yet progress is slipping away through our fingers. Our colleagues and brothers and sisters, in solidarity, have achieved much in eastern and southern Africa, seeing millions receive treatment and the benefits of viral suppression. Yet in so many contexts, a lack of will has stalled progress that is essential if our hopes are ever to come true. A lack of urgency, resources, and the political will to bring our most powerful interventions to bear has brought the field to a fork in the road. We have arrived at a moment that shows us what is possible, or we could backslide away from the gains so hard won in recent years.

In 2014, UNAIDS and partners launched a “Fast Track” strategy to end AIDS by 2030. It was called a leap forward, laying out a plan to quicken the implementation of proven treatment and prevention interventions with milestones or targets to be met by 2020, setting the world on a trajectory to end the AIDS epidemic by 2030. In 2014 this was to be the blueprint for the work ahead.

Many of these targets will be missed in 2020, that is known. But understanding why we didn’t make it and what must change will be the true testament of our moment. The field can deploy our newfound knowledge of the last six years, collaborate with communities, and fill in the gaps so that we develop programming that is adaptive and meaningful in the lives of the communities that must be reached. With smarter, more adaptive plans, fed by what we’ve learned, we’ll set in motion proactive, grounded strategies that, at their core, are centered around those most affected.

The past six years have brought important new lessons and reinforced ones we’ve known a long time. We understand the power of treatment and the challenge of sustaining people’s connection to care. We’ve seen again the importance of programs that take aim at the structural drivers of the epidemic for the most at-risk groups. The prevention package expanded, and as it continues to grow so does our understanding our how to best work with communities. The field is exploring and refining how to build solid programs that are rooted in science and adapted to fit the needs of particular people, places, and priorities. All this will come into full strength if we follow a path carved by deep community engagement because we know community has the power to change the world.

So when I asked the question “Now what?” I say we continue to cycle out programs that aren’t working or are no longer relevant to people’s experiences, making new models that speak to the needs of the community. And that we do it with the single-minded purpose of ending the pandemic while maintaining justice and bending it towards equity. We must explain how this work fits into people’s lives. We must be a groundswell. We are in a transformative time. A sprint towards strong targets over the next 10 years, one that is bold daring and inclusive, even if we come up short will save millions of lives. We have to be able to explain the why and how of what has changed already, what must still be done, and how it all makes people’s lives better than the day before, and better for the day to come…if we pull together.

So that is what we do now.

Bold Leadership—The Missing Piece in the Fight Against Stigma and Human Rights Violations Against the LGBTIQ Community

Prince is a proud and out trans man and human rights activist in Malawi. He is affiliated with LITE (Lesbian Intersex Transgender and other Extensions). Prince advocates for the eradication of stigma and discrimination faced by the LGBTIQ community accessing public services, affecting health, security, justice and economic opportunities. He teaches a class on gender, sexuality, and the acceptance of LGBTI persons at Lilongwe University of Agriculture and Natural Resources, and is a member of AVAC’s PxROAR Transgender program.

Many LGBTIQ activists are failing to understand the intersectionality of the fight against HIV/AIDS, decriminalization of same-sex marriages and the struggle towards freedom. In October 2019, I had an opportunity to attend the 4th Biannual Trans Conference in South Africa. Here I heard activists decry the link between HIV/AIDS and escalating violence against LGBTIQ persons, a doubling of stigma. As a human rights defender and an activist for biomedical HIV prevention methods, I was dismayed to learn how activists attempt to distance themselves from HIV programming to focus exclusively on human rights issues. But as I sat listening to the discourse and reflecting on my country, Malawi, I couldn’t fault their arguments, derived from concerns about persistent and widespread stigma against LGBTIQ communities.

I have realized that when it comes to HIV programming for key populations, what many stakeholders think of when they hear about LGBTIQ persons are lubricants, condoms and PrEP. If this kind of inventory is unavailable or hard to get for key populations, you can hear voices chime up, demanding access to these life-saving resources. But many of these same voices grow quiet at other times, unwilling to openly denounce inhumanity that happens to LGBTIQ persons.

In Malawi, a lot of violence and brutality is pointed at LGBTIQ persons, but a strong cross-section of allies consistently coming forward to condemn such inhumane acts is missing. They choose to play the background role and face each day as if nothing happened. But who will blame them, when considering the heteronormative and religious bigotry which continues to marginalize LGBTIQ persons all over the world. I remember attending a forum where one member loudly said that training 100,000 healthcare workers on sexual orientation, gender identity and gender expression (SOGIE) would not be enough to overcome the barriers that block access to healthcare for LGBTIQ persons. She went on to say that it’s not a question of knowledge, but one of perception. In her concluding remarks she said, and I quote, “even some of us here, we accept you only in this space but when we are home we sit and say ‘mmmh.’”

I really applaud UNAIDS efforts to fight for equality for LGBTIQ persons, and they do more than merely react when attacks are made against LGBTIQ activists. UNAIDS sets the pace for key population HIV programming in so many countries, including Malawi. Much as I am tempted to call for stakeholders and allies to imitate UNAIDS in the fight for justice for LGBTIQ persons, I also want people to have honest conversations with themselves first. People need to evaluate and analyze their own personal prejudice and values against LGBTIQ persons, and, I hope, come to the realization they can fully commit themselves to the fight for justice. We need allies that are bold, courageous, fearless and honest to stand with us in the fight for justice within programming for HIV key populations and beyond it.

Generation Now Responds, Part II

Launched on World AIDS Day in December, AVAC has another installment of our blog carnival Generation Now Responds. In AVAC Report 2019: Now What?, we called out to young advocates, members of “Generation Now”, encouraging them to sustain their bold efforts in the fight against HIV. In Part II of the series, Matthew Rose answers with a sweeping view of the history of the epidemic and what must come next and Prince Mikel Juao gives readers a view on what the fight looks like in Malawi, where stigma can be an overwhelming force.

Feb 6 Webinar: What’s New—and Next—for TB Vaccines

Eliminating TB by 2030—the timeframe set by United Nations member states—will not be possible without developing and introducing new TB vaccines. Decades of investments in TB vaccine research and development are starting to pay off — join fellow advocates to learn about the latest in TB vaccine research and discuss next steps based on recent results!

Join Treatment Action Group (TAG) and AVAC on Thursday, February 6, at 9am New York | 3pm Geneva | 4pm Cape Town | 7:30pm Delhi for a webinar featuring an update on recent vaccine results and possible next steps with M72/AS01E, one of several new TB vaccine candidates.

REGISTER HERE.

The TB vaccine field is buzzing in 2020, with at least two Phase II trials reporting positive results in the past two years and several other trials either underway or close to finishing. Of particular interest, the positive finding in a Phase IIb trial of TB vaccine candidate M72/AS01E provided 50 percent protection against developing TB disease in HIV-negative adults with TB infection. The Phase IIb trial of this candidate vaccine was sponsored by GlaxoSmithKline (which developed it) and funded by GSK and Aeras (now IAVI).

Next month’s webinar will feature Dereck Tait from IAVI who will present an overview of the M72/AS01E Phase IIb trial results, and Johan Vekemans from the World Health Organization (WHO) who will summarize a series of WHO-hosted consultations on the path forward for M72/AS01E’s development and possible licensure.

Presentations by:

  • Johan Vekemans | World Health Organization, Initiative for Vaccine Research, Geneva, Switzerland
  • Dereck Tait | IAVI, TB Program, Cape Town, South Africa

Q&A and discussion moderated by:

  • Mike Frick | TAG, TB Project co-director
  • Stacey Hannah | AVAC, Director of Research Engagement

If you’re looking for background information in advance of the webinar, here are some useful resources:

We look forward to the conversation on February 6th!

The Global Gag Rule is still Hurting Women and Girls

Bergen Cooper, MPH, is the Director of Policy Research at CHANGE. And Kevin Fisher is the Director of Data, Policy & Analytics at AVAC. This post first appeared on Inkstick.

The US Government knows how to do smart, effective HIV programming globally — but for the past three years, it has been getting in its own way. That’s because the US President’s Emergency Plan for AIDS Relief (PEPFAR), the largest government commitment to global HIV, was placed at risk when President Trump reintroduced the so-called global gag rule, applying it for the first time to PEPFAR. This policy prohibits foreign non-governmental organizations (NGOs) who have received any PEPFAR funding from providing, advocating for or counseling women on abortion — even with their own funding or other donors’ funding.

While the global gag rule isn’t new — it was introduced by President Reagan in 1984 and has been removed by every Democratic president, and reinstated by every Republican president, ever since — the Trump administration took the policy further than ever before, jeopardizing a range of global health programs. By extending the gag rule to PEPFAR, what once applied to approximately $600 million, now applies to nearly $9 billion. Simply put, if you are a foreign organization who receives one dollar from PEPFAR then neither your organization nor anyone you support financially can provide or speak about abortion, except in cases of rape, incest or endangerment of the life of the pregnant woman.

So what? Can’t these NGOs go to other funders, like the Nordic countries? Not exactly. For HIV prevention and treatment, PEPFAR is a major player. PEPFAR now provides treatment to 15.7 million people, up from 3.0 million in 2010 despite a flat budget since then. PEPFAR’s DREAMS program is driving reductions in new HIV diagnoses in adolescent girls and young women by 25 percent or more in all regions where it works. PEPFAR is also promoting rights-based programming for adolescent girls, young women and LGBTQ people in all the countries where it works. For most NGOs committed to ending the epidemic in their countries, to step away from PEPFAR would be to give up.

Why does this matter now? As this year’s AVAC Report makes clear, the global UNAIDS goal of reducing infections to 500,000 will not be met and remains stuck at 1.7 million people in large part due to our inability to slow infections in adolescent girls and young women. In sub-Saharan Africa, four in five new infections among adolescents aged 15–19 years are in girls. Because young women often seek sexual and reproductive health and HIV prevention services at the same time, the global gag rule represents a direct threat to combatting new infections.

Evidence shows the best and most effective way to reach adolescent girls and young women with HIV prevention is in integrated services through one-stop family planning clinics. That option is now closed for PEPFAR programs. Adolescent girls and young women in family planning clinics are referred to HIV prevention programs across town, or even in a different town. This is the system we have now under the global gag rule, and it is not working.

What could integration without the global gag rule achieve? Well, according to UNAIDS 46 percent, or 736,000, of all new HIV infections are in women. Some percentage of those infections would certainly be prevented by integrating family planning and HIV prevention services. If only 20 percent of infections were averted, that’s 150,000 fewer infections every year. This approach is not new. Health services globally have already moved to integrated programs. It’s a good policy — so good, in fact, that we are doing it in the US.

Just this week, CHANGE (the Center for Health and Gender Equity) released Trump’s global gag rule data sheet, a composite of the over 40 unique and devastating impacts of the policy over the past three years. Here is what we know:

Trump’s global gag rule expansion has contributed to the closing of clinics that provide comprehensive sexual and reproductive health and rights services including serving women living with HIV. The policy increases the risk of de-integration of family planning and HIV programming. This can lead to a decrease in access to family planning for people living with HIV.

Under the Trump administration, one-third of the nearly 300 PEPFAR partners across 31 countries surveyed by amfAR reported having to change their HIV prevention and treatment services.

So much so that the International Planned Parenthood Federation projects that Trump’s global gag rule expansion will render them unable to provide antiretroviral treatment to 275,000 pregnant women living with HIV and 725,000 HIV tests to people at risk of acquiring HIV.

We believe in the power of PEPFAR. The Trump administration‘s unprecedented expansion of the global gag rule undercuts the progress of what is widely considered the most effective and efficient development program in history. The impact of the global gag rule is not just in creating inefficiencies, but in impacting and in some cases shortening the lives of thousands of adolescent girls and young women. This is the third year of the policy’s reimposition, an anniversary that should not be repeated.

Designing PrEP Messages That Work for Young Women: Learning from the Jilinde PrEP project in Kenya

One of the most ambitious programs to roll out oral pre-exposure prophylaxis (PrEP) to populations at risk of HIV so far is Kenya’s Bridge to Scale project, also known as Jilinde, and run by Jhpiego (a Johns Hopkins University affiliate). Jilinde has built in a robust evaluation process that continuously tests and changes its messages and outreach aimed at adolescent girls and young women (AGYW), among other populations. This process was based on an iterative strategy using human-centered design and broad stakeholder engagement that could inform efforts the world over to reach persistently underserved populations with HIV prevention at scale.

The introduction of PrEP in Kenya was backed by a substantial government commitment, and as of October 2019, Kenya counts 56,000 people who have started PrEP. The only country with higher numbers is the US at approximately 132,000 people. Since launching in 2016, Jilinde (a consortium of partners that includes Jhpiego, NASCOP, PS Kenya, ICRH-K and Avenir Health) has rapidly scaled up PrEP. Kenya surpassed a national target set with PEPFAR in 2018 by 559 percent, and there are plans for bold targets in 2020. But bringing PrEP to AGYW and helping them stay on PrEP for as long as they need remains an urgent matter—AGYW age 15-24 made up almost 25 percent of all new HIV infections in Kenya in 2018.

To get PrEP to the people who need it most, in 2017, implementers in Kenya embraced a marketing strategy called segmentation, which groups end-users by behaviors, attitudes, beliefs—rather than only demographics—and develops messages for each based on the traits they share. Segmentation in the context of HIV prevention then uses those groups to inform investments in products and programs designed to meet their needs.

Jilinde’s segmentation work drew from qualitative and quantitative research with end-users conducted by ThinkPlace and Busara Center for Behavioral Economics, and from a series of workshops with young women, civil society, key populations and NASCOP.

Messages and strategies for reaching each segment of end-users were prototyped, designed and piloted. The implementation process led by Jilinde brought in civil society organizations to an early-phase workshop, and included them in efforts to pilot outreach and messages based on what had been learned. Throughout, the team kept an ear out for the distinct fears, aspirations and needs of each segment—to develop messages that spur action.

Initially, Jilinde used a single message for AGYW in the 10 counties targeted for PrEP rollout—an upbeat Swahili slogan in primary colors that reads “KujiPrEP Ni Kujipanga Poa,” which when translated to English means: “PrEP yourself, and plan yourself well”.

Swahili slogan

“We built that message from insights that young people want to be in charge of their health, that no one will care about you more than yourself, and your health is a responsibility,” said Aigelgel Kirumburu, who brings communications and marketing expertise to Jilinde. Creating messages that increase awareness of PrEP among the general population is important especially when a new intervention is first introduced. As the program matured, reaching more AGYW was a priority. Developing tailored messages that recognized and resonated with different segments of AGYW helped to tap into their different motivators for seeking HIV prevention.

Staff also took notice of research from other settings that dug deep into the complex challenges young women face when it comes to primary prevention, sexual and reproductive health, stigma, community norms, parental attitudes, personal agency and the powerful influence of male partners in their lives.

“We looked at developmental science, Adolescent 360’s Nigeria Insights and HIV Prevention Market Manager’s Breaking the Cycle of Transmission and began to understand how hard it can be for a young girl to see her own risk as both real and preventable,” Aigelgel explained. “Plus, relationships are always a primary concern—they [AGYW] don’t want to do anything that puts important relationships at risk.” For example, key insights from the Breaking the Cycle of Transmission found that AGYW in South Africa overestimate their ability to judge risky partners, are rewarded in their environments for minimizing prevention and underestimating risk. In addition, seeking current prevention strategies often involves conflict with disapproving partners, parents, and health care professionals. Meanwhile, those providers who are empathetic often transmit erroneous information to young clients.

Aigelgel says in 2019 the team reexamined the segments they had defined among AGYW. It was time to develop more tailored messages for each of them and design outreach efforts to more effectively reach the various segments. Recognizing that AGYW’s relationship to PrEP varies and can change over time, Jilinde created specific messages for each segment around PrEP awareness, uptake, adherence, and discontinuation. “We’ve realized that one segment is very different from another. What may be important to one girl would not be important to the other,” says Aigelgel.

Table 1: Jilinde AGYW Segments

Jilinde AGYW Sgements Chart

Jilinde has been piloting this refined approach to engage each unique segment, work that continued through the end of 2019. When testing the new messages, Jilinde found that AGYW liked simple messages they could relate to.

“PrEP keeps me on top of my game” emerged as one message that was easy-to-understand, while AGYW thought “PrEP keeps me lit” and “Life is good when PrEP is Fly” were less clear.

“PrEP keeps me secure” and “PrEP is my future” resonated with girls who saw PrEP as a tool to cement their futures and care for their families.

Messages that didn’t spark an interest included: “PrEP is popular, using it makes me fit in” and “PrEP is fun.”

Messages that included a visual—such as photos of other AGYW in the community—got them interested in what the messages had to say.

Beyond messaging, other interventions also came out of the process. To foster girls’ sense of empowerment, Jilinde developed Brighter Future Events: community-based youth-focused gatherings. These events offer PrEP and reproductive health services alongside activities such as bead-making and entrepreneurship lessons, allowing girls to relate PrEP use to their aspirations. Additionally, satisfied PrEP users leverage the power of peer influence to identify eligible girls with whom to talk about PrEP and emphasize its benefits. PrEP users also hand out AGYW-friendly, relatable and easy-to-understand information and education materials (IEC), which reinforce the idea that PrEP is the “in” thing. This peer-to-peer engagement creates a safe space, providing ambivalent young women opportunity to discuss their reservations with their peers and hear testimonials in a non-judgmental environment.

Moving forward, Jilinde intends to incorporate preferred messages in a guide for peer educators, disseminate them to service providers, and promote unified communications for demand creation and service delivery. At the end of 2019, Jilinde transferred management of Kenya’s PrEP program over to the Kenya government’s NASCOP. As part of the transition, Jilinde has contributed to NASCOP’s technical guidance on demand creation, provided campaign materials for PrEP and transferred its PrEP communications materials and social media platforms to NASCOP. “It has been such an important priority to make this a smooth transition,” Aigelgel says.

Looking ahead in 2020, Jilinde will undertake formal research on the impact of its outreach strategies. Aigelgel emphasizes it is vital to continue to learn if AGYW like the messages, show up at Brighter Future Events, engage with the peer-driven conversations, use safe spaces, and respond to campaigns. Findings will be part of an iterative body of evidence to determine where the Kenyan government should invest and what interventions have the greatest impact.

For more resources on AGYW segmentation, see: