What’s New?

Check out these new resources and updates on AVAC.org and PrEPWatch.org.

Pushing the Field Forward

Read Describing–and Doing–the Work: AVAC in print and in the streets, featured on our P-Values blog, for AVAC’s overview of articles featured in a special issue of Current Opinion in HIV and AIDS. AVAC staff members Emily Bass, Laura Fitch, Anabel Gomez and Maureen Luba Milambe joined collaborators in advocacy and human-centered design to co-author two important articles that each highlight our core business of bold, evidence-informed advocacy and action.

Doing It Right: Anatomy of an effective stakeholder consultation

What made the early stakeholder consultation for the Microbicides Trials Network study MTN-042, or DELIVER, such a powerful tool for meaningful engagement when so many other meetings under the name of “stakeholder engagement” are perfunctory occasions? Read our blog to find out!

Diving Deep into Demand Creation

The OPTIONS Consortium—a USAID-funded initiative to expedite and sustain access to antiretroviral-based HIV prevention products—has developed a five-part video series, featured on PrEPWatch.org, that explores key aspects of demand creation for PrEP. Watch them to learn more about what it means to generate useful insights, and how to apply those insights to reach the people who need PrEP the most. And be sure to check out the complementary PrEP Communications Accelerator to help fast track PrEP uptake through strategic communications and demand creation.

Putting Data to Use as Advocates

Listen to a recording of amfAR’s recent webinar Data To Win in the COPs to see its databases on PEPFAR Monitoring, Evaluation and Reporting (MER) come to life as a tool for advocacy. Created as part of the COMPASS Africa collaboration, this web tool gives HIV advocates access to a wide range of PEPFAR program data, such as district-level data with descriptions of what each indicator means, how the results are measured, and how the data can be interpreted. These data are presented in a variety of formats including data visualization, maps and downloadable PDFs.

PrEP Use Around the World: Global PrEP Tracker update

For details on the status of PrEP around the world, download the latest version of the Global PrEP Tracker available on PrEPWatch.org. It provides data on programs, number of enrollments, regulatory status and more—updated February 2019!

Making Our Px Pulse Podcast Even Better!

AVAC wants to hear from you! A year-and-a-half and 15 episodes later, we want to know how well Px Pulse serves your needs. Take this 10-minute survey, and we’ll apply what we learn to bring you insights and information about advocacy for HIV prevention research in the year ahead.

Announcing the 2019 Fellows

Early in February, we proudly announced our 2019 Fellows. These seven advocates, representing the 10th class of AVAC Fellows, will be taking on a variety of priority issues and engaging their communities and governments in Kenya, India, Malawi, Nigeria, South Africa, Uganda and Zimbabwe. We hope you’ll find ways to collaborate with them and with us as the field faces major challenges and opportunities in the year ahead from the results of the ECHO and DISCOVER trials to the evolving rollout of oral PrEP, the possible approval of the dapivirine vaginal ring, a new urgency around condom programming and more.

Anatomy of Effective Stakeholder Consultation: A look at best practices from a consultation for MTN 042

Jeanne Baron is AVAC’s web editor and producer of Px Pulse. Manju Chatani-Gada is AVAC’s Director of Partnerships & Capacity Strengthening.

Incorporating stakeholder engagement early and deeply in the development of a clinical trial for HIV prevention research is for us a clarion call. Including a diverse cross-section of expertise and perspectives at the outset, especially of those who may rely on these strategies to prevent HIV, helps research stay on track to eventually deliver options people will trust and use.

A regional gathering in Johannesburg to discuss the design of a trial called MTN 042 showcases several elements that make early stakeholder consultation a powerful tool when so many other meetings under the name of stakeholder engagement are perfunctory occasions.

Photos from the stakeholder engagement meeting

Also known as DELIVER, MTN-042 will be conducted by the Microbicides Trial Network (MTN) which is funded by the US National Institutes of Health. This study is one of a handful stepping in to fill a vacuum that exists around HIV primary prevention for pregnant women. Data suggest that women are much more likely to become infected during pregnancy and even more likely in the postpartum period. For many women, this represents a significant proportion of their reproductive years. Despite this heightened risk, research often excludes pregnant women in order to protect the developing fetus from possible adverse effects. But this leads to a dearth of data on safe and effective biomedical HIV prevention, such as PrEP, during pregnancy.

MTN 042 will investigate the safety of oral PrEP and the dapivirine ring as HIV prevention for pregnant women. It will also provide information on what kind of trial design will be both acceptable and produce useful results for studies involving pregnant women.

For almost a decade AVAC and the MTN have collaborated on stakeholder consultations, over the years refining our approach based on feedback from hundreds of participants. This work represents a vital aspect to the larger work of Good Participatory Practice, which we encourage readers to learn more about here. The Stakeholders Consultations on MTN-042 in 2018 reflect our best practices in consultations to date.

Manju Chatani-Gada, co-convener of the consultation explains what happened in Johannesburg and why following practices and principles like these mean studies like MTN-042 are better set up for success.

Don’t Confuse an Update with a Consultation

“We often hear of large stakeholder meetings, held right before a trial starts. These meetings can be an important platform to explain the study’s goals, timeline and details about the intervention under investigation, but the meeting participants are not being consulted. Participant feedback may be interesting but will not be used to amend the trial. This is an update,” says Chatani-Gada. In contrast, a consultation poses questions, creates the conditions for an exchange of knowledge, and uses a transparent process for applying the findings to the study’s ultimate design.

At the AVAC/MTN stakeholder consultation, “The [MTN] team made clear what they were taking from this consultation into their protocol meeting, which immediately followed the consultation” says Chatani-Gada.

The agenda of the subsequent meeting to refine the MTN-042 protocol was shaped around issues and recommendations raised at the stakeholder consultation. As the consultation report describes, the next version of the protocol incorporated several of the suggestions made at the consultation. “Not everybody does that. Things are changing but civil society stakeholders have sometimes felt that they have been invited to rubberstamp fully developed plans.”

feedback from the meeting

Get Stakeholders to the Table Early

The consultative process should start with the development of the protocol, which spells out the rationale, objectives, methods and other details of a clinical research study. The protocol should reflect insights that have been gathered from an early and comprehensive discussion with key stakeholders. Ideally, community members should also be part of protocol committees themselves.

“At this meeting the investigators gained insights about how to shape fundamental aspects of the study so that people will feel comfortable supporting it,” says Chatani-Gada. For example, stakeholders encouraged researchers to follow up with infants born during or after the study for a longer period, and to find ways to establish a better baseline for adverse and healthy outcomes in pregnancy in the relevant communities. In addition to this early regional consultation, there are important country-level consultations. Those will follow in 2019 in Malawi, South Africa, Uganda and Zimbabwe and will include a larger number of women from the proposed trial communities as participants.

Include the Right People and Spotlight Community Voices

It’s critical that the leadership of a study understand the experiences and concerns of potential trial participants and their immediate and broader communities. Relying only on community advisory boards to filter this information may obscure pressures that could complicate the progress of the trial down the road.

“Trial participants, like all people, have complex lives and sometimes face challenging conditions as they make decisions. Researchers need to hear directly from them, and a diversity of other stakeholders too, to better understand those challenges and respond accordingly. Research must fit into the lives of the people in the trial rather than have them fit their lives to research,” says Chatani-Gada.

The researchers behind MTN-042 saw this first hand at the Johannesburg regional consultation. They needed to know if research involving pregnant women could even get through a review process in the places where the proposed trials would take place: Malawi, South Africa, Uganda and Zimbabwe. To explore this question, 35 people were invited to the discussion: researchers; regulators; representatives from ethics committees, ministries of health and the WHO; advocates with expertise on HIV prevention and women’s health and empowerment; and two women from one of the trial-site communities. Both had recently been in a study investigating PrEP use and safer conception. (In these earlier studies, women who became pregnant exited the study. MTN-042 will exclusively study PrEP among women who are already pregnant.)

As people in the room began to share a consensus about moving forward, these two women offered unique and powerful perspectives. Their participation in those earlier trials meant they were relatively knowledgeable about clinical trials and also concerned about their HIV risk. When they were asked, “Would you continue to take PrEP during your pregnancy if you were offered it?” their answers differed. One said, “No, I would not be comfortable joining this trial until I knew the drug was safe.” The other said she would have taken it because she is worried about her exposure to HIV and what it would mean to her child if she got infected.

“This was a gut check and a reminder not to make assumptions about what decisions people will ultimately make. A minister of health, a researcher, a member of the ethics committee is not going to be asked to join a trial. Researchers need to confront these truths and recognize different women will make different choices. Women are not homogenous; their needs are diverse. We can’t presume we know what they need or want, ” says Chatanti-Gada.

Put Everyone in the Room on Equal Footing

To create the conditions for open dialogue, the facilitators set the tone early on in the meeting. “We started the consultation with civil society partners talking about what HIV prevention means to them. So people can get quite personal about how HIV prevention comes up in their lives.This opener grounded the discussion in real-world considerations,” says Chatani-Gada.

“We set the tone by encouraging an informal setting. We relied on first names. There was no Minister So-and-So, or Dr. So-and-So. Everyone participating has to see each other as equally credible and influential, and techniques such as these foster those values.”

It’s also important that everyone involved can engage with the science being presented. “As we often do, we convened a pre-meeting for civil society and community participants in the days before the consultation. Often, we exclude researchers from these sessions. It’s a safe space to break down research terms, wade into the content, and raise questions and concerns. Participants from the pre-meetings routinely tell us these pre-meetings build their confidence in discussing research. It equips them to dig into the material and direct the conversation.”

Encourage Discussion and Questions with New Meeting Practices

It’s important to use multiple methodologies to engage the participants, such as presentations, testimonials, panel discussions, real-time surveys and such. MTN often uses a digital instant-response system to probe important questions. Participants see a question on a screen and can anonymously select from multiple-choice answers. Everyone can see the results in real-time.

“Very interesting conversations flow from these sessions, and it gives the investigators a chance to explore issues that still concern stakeholders.” It also gives researchers immediate answers to the most critical questions they have about a protocol.

For example, this process revealed that almost all participants wanted changes to the makeup of an interim review panel. They suggested African experts be selected over American ones with similar credentials, and a greater number of community representatives should be on it as should experts on pharmacokinetics, drug interactions and certain regulatory matters.

Chatani-Gada also says this set of questions and answers represents concrete findings from the consultation—an overview of what the investigators learned from the participants, which makes transparent how the consultation findings will be carried forward for further consideration.

Commit to Ongoing Stakeholder Engagement

One-off meetings achieve little of lasting value. Instead, broad stakeholder meetings and community-level engagement must be ongoing. They are all critical for research literacy, awareness of HIV prevention and recruitment for the trials. A strong partnership between the research field and civil society relies on continuing dialogue with many different ways to offer feedback.

Follow up is Essential

For example, local organizations will work in partnership with AVAC and MTN to co-convene country-level meetings on MTN-042. Their leadership at the very beginning of the planning stages mean they will help shape the agenda and participant list in the national and local consultations to come, and increase interest. It also means these local partners will play an ongoing role in garnering support for the study’s success. “By working together, the community, civil society and the researchers carry the field forward together. And that’s what we need for HIV prevention research to succeed.”

AVAC’s Podcast Px Pulse, Switching It Up In 2019

AVAC wants to hear from you! We launched our podcast, Px Pulse, in late 2017 and since then we have produced 15 episodes bringing you interviews, first-person reflections and rich discussions covering issues facing HIV prevention research and advocacy. Now it’s time for us to take stock and learn more about what you want from Px Pulse and how to deliver it. Whether or not you have ever listened to AVAC’s Px Pulse, we’d like your feedback!

Please take 5-10 minutes and fill out this brief survey!

We’ll invest your feedback into generating future episodes that cover your priorities in a style you find compelling and in a format that works for you!

Announcing the 2019 AVAC Advocacy Fellows

AVAC is delighted to announce the 2019 AVAC Advocacy Fellows – the 10th class of the Fellows Program!

AVAC’s Advocacy Fellows Program was launched in 2009 to expand the capacity of advocates and organizations to monitor, support and help shape biomedical HIV prevention research and implementation in countries where research is ongoing and/or new interventions are being rolled out. The program is guided by AVAC’s commitment to effective and sustainable advocacy that grows from organizational and individual interests, priorities and partnerships.

In the 10 years of the program, we are proud to have identified and supported 70 Fellows. Each of these advocates have identified gaps and made their own commitment to advancing HIV prevention tools, policies and programs that meet the needs of their communities and countries. Alumni fellows continue to champion HIV prevention, often leading or playing key roles in moving the prevention agenda forward in their countries and regionally. Please visit the Advocacy Fellows page to learn more about the current and alumni Fellows and to meet the 2019 group.

The seven 2019 Advocacy Fellows were selected from a pool of over 120 applicants from 20+ countries. We are happy to welcome our youngest cadre of fellows and our first fellow ever from India. We thank all of the applicants and their proposed host organizations for the time and effort put into the application process. We’re also grateful to the independent review committee of advocates, scientists and former Fellows and Hosts who guided our decision-making.

Join us in welcoming the seven 2019 Advocacy Fellows and the organizations that will host them:

The 2019 Fellows’ year begins in April at a time when there are several critical issues confronting the HIV prevention field including anticipated results from the ECHO and DISCOVER trials; consideration for programs and policies for the rollout of oral PrEP—and possibly the dapivirine vaginal ring; prioritization of condom programming; bringing the voice of community advocates to the center of the research agenda and much more. We hope you’ll find ways to collaborate with the new Fellows in 2019 and beyond.

A Call for Applications for the 2020 Fellows Program will be announced mid-2019. If you would like to be notified or have any questions, please email us at fellows@avac.org.

And stay tuned for more information about the 10 years of the Advocacy Fellows program!

Describing—and Doing—the Work: AVAC in print and in the streets

In a special issue of Current Opinion in HIV and AIDS, published in January 2019, AVAC staff members Emily Bass, Laura Fitch, Anabel Gomez and Maureen Luba Milambe joined collaborators who work in advocacy and human-centered design to co-author two important articles. Each highlight our core business of bold, evidence-informed advocacy and action. The articles are:

These articles are behind a paywall for now. If you are interested in obtaining a copy and cannot get access, please contact us here, as AVAC is committed to sharing information and generating discussion without barriers. Publishing work like this in peer-reviewed journals is an advocacy tactic, as it puts critical ideas and histories into the “official” record. The good news is that the content in the articles is robustly reflected in our ongoing work and in our other publications.

In Demand creation for primary biomedical prevention: identifying lessons across intervention to inform daily oral preexposure prophylaxis programs, co-authors Emily Bass, Laura Fitch, Anabel Gomez and consultant Rebecca Loar, make the case that today’s primary prevention programming isn’t yet harnessing the potential of human-centered design, and that lessons from the rollout of voluntary medical male circumcision (VMMC) must be urgently brought to bear on newer strategies like PrEP. To find out more about how and why, check out the 2018 AVAC Report, and the work of the Prevention Market Manager.

In Civil society demand for accountability to achieve 90-90-90 targets: lessons from Eastern and Southern Africa, Maureen Luba and colleagues use case studies from Kenya, Malawi and Uganda, among other countries, to show how African AIDS activism has shaped the global response, and must continue to do so. These case studies capture work that’s opened the PEPFAR process to civil society engagement. These stories demonstrate how, through innovative North-South partnership, civil society has successfully unlocked what had been a closed and relatively unaccountable process for setting goals and allocating resources. This work is ongoing in many forms and on many fronts, including via the Coalition to Mobilize Power, Activism, Strategy and Solidarity (COMPASS) Africa, a multi-country activist effort that AVAC is proud to work on with allies in the global North and South. Learn more about this work and about PEPFAR engagement here.

Key Points from the Articles

From Demand creation for primary biomedical prevention: identifying lessons across intervention to inform daily oral preexposure prophylaxis programs:

  • The literature on demand creation for other HIV biomedical primary prevention strategies have much to teach anyone interested in seeing interventions reach the people who need them. For example, one study of the demand creation for VMMC from Zambia and Zimbabwe details the benefits derived from using demand-side thinking to segment potential end-users.
  • Studies on condoms suggest the risk failure if demand creation is neglected. The authors note falling investment in demand creation coincided with an increase in new HIV diagnoses in Burkino Faso. And other condom studies described problems such as a lack of market analytics and “inadequate sustained demand creation for targeted segments of the population including young people, men who have sex with men, and sex workers.”
  • The urgency behind all of these findings becomes clear when one considers reports like one cited in the article from a Kenyan demonstration project that found high rates of discontinuation of PrEP across key populations groups. But that does not mean people don’t want PrEP. It can’t be emphasized enough, VMMC saw significant gains after efforts at demand creation underwent a process incorporating demand-side thinking.
  • Even more chilling, the authors point out, “failure to integrate and act on the lessons learned from VMMC delivery could imperil future investment in PrEP and other key interventions… Indeed, unmerited statements about who will or will not choose to use adherence-dependent methods such as daily oral PrEP or a future microbicide are already being made with some regularity.”
  • Demand creation and services for delivering primary prevention must be designed with care, both must address the varied needs of people at risk of HIV. Until then, no one will know what works.

From Civil society demand for accountability to achieve 90-90-90 targets: lessons from Eastern and Southern Africa:

  • Relentless work from national and global advocates has resulted in critical gains in access to HIV treatment and prevention but has not been well-documented. This article begins to address that absence with several case studies. Together, they tell the story of advocates turning to innovative methods to gain the attention of decision-makers, mustering evidence and persuasive arguments, and bringing meaningful change.
  • This history makes the case for scaling-up the capacity of civil society as a priority to gain control of the epidemic.
  • The stories illustrate three unique and vital functions attributed to civil society:
    a) Through innovative North-South partnerships, civil society has unlocked what had been a closed and relatively unaccountable process for setting goals and allocating resources.

    b) Civil society invigorates discussions, replacing status quo assumptions with fresh analysis. This pressure creates new possibilities, improved strategies and greater impact from interventions.
    c) Civil society’s continual demand for accountability and its ability to push an agenda led to institutionalizing a more open process for decisions on policy, programs and funding.

  • UNAIDS reports that missing the 2020 fast track targets (fewer than 500,000 new cases and fewer than 500,000 deaths from HIV annually) by only five years will mean a million more deaths and two million more cases by 2030. As the authors make clear, the unique role played by civil society is a matter of life and death. The power of advocacy must be leveraged with a greater commitment to fund and support it.