Advocacy Fellow Ntando Yola at AIDS Vaccine 2013

On October 7, at the AIDS Vaccine 2013 Conference in Barcelona, AVAC Advocacy Fellow Ntando Yola gave a powerful speech on the continued and urgent need for an HIV vaccine. We hope you’ll all view the webcast here—and read on for highlights. Stay tuned to the Advocates’ Network for a conference wrap-up and webinar announcement.

Ntando worked at the Desmond Tutu HIV Foundation as a Community Engagement Coordinator prior to starting his 2013 Advocacy Fellowship hosted by the Networking HIV/AIDS Community of South Africa (NACOSA). In both of these roles, he’s participated in extensive dialogues with communities engaged in HIV prevention research. In the speech, he told the story of Grace, a South African woman living with HIV. “Brother, in ten years we’ll have a vaccine for HIV, won’t we?” she asked him. “At least when the vaccine comes, my son will be 15 years old and he won’t have to worry about HIV the way I have.” Using Grace’s story, as well as his own experiences growing up with—and witnessing the end of—apartheid, Ntando made a strong case for research and stakeholder engagement that reflects the realities of volunteers’ lives. “Trial participants who face everyday living realities in my country like flooded homes in the winter, may face township fires in the summer, live in shared ablutions, have high rates of unemployment. Yet in all these circumstances, they volunteer.”

Science Café in Nairobi

In July, AVAC and Internews in Kenya organized a journalists briefing on PrePex, a non-surgical device for voluntary medical male circumcision (VMMC) pre-qualified by the World Health Organization (WHO). (Click here for more on this process.) This was the first in a planned series of journalist “cafés” designed to spark conversation about VMMC and the role of non-surgical devices.

“Prequalification” is the process by which the WHO determines that a product meets required standards of quality, safety and efficacy for international use. This step paves the way for purchasing by international programs, such as PEPFAR and the Global Fund for AIDS, Tuberculosis and Malaria. PrePex is the first circumcision device pre-qualified by the WHO, and there are currently a range of evaluation studies underway to find out more about its acceptability, safety and feasibility.

Twelve journalists attended the conversation in Kenya—and they had a number of questions. “How will PrePex complement conventional VMMC surgery?” asked Thomas Bwire, an editor with Pamoja FM, a community radio based in the Kibera section of Nairobi. This is an essential question—and one that the evaluation studies described above are designed to address. As countries look at the information from these studies and decide if and how to introduce non-surgical devices alongside surgery, we will get a better picture of how these two options are viewed and sought by men as well as women, who play a key role as parents, partners and allies of men seeking circumcision.

Journalists also asked about the price of PrePex. The currently quoted cost is approximately US$20. There are ongoing negotiations that could bring the price down through bulk-purchasing agreements, but so far no new price has been set.

The journalists also emphasized the need to better communicate the partial protection message to men and their communities. Circumcision does not afford complete protection against HIV transmission and that must be made absolutely clear. VMMC is just part of combination HIV prevention—behavioral interventions, HIV testing, STI treatment, immediate initiation of ART, couples counseling and testing and condoms among others, as the local context dictates.

AVAC is collaborating with partners in South Africa, Uganda and Zambia to organize similar cafés in the coming months. Please contact us if you would like to be involved.

New GPP Tools in the Making

The Good Participatory Practice Guidelines continue to be rolled out in various contexts and are increasingly seen as an essential tool for engaging stakeholders in research. In recent months, AVAC collaborated with partners in Kenya, South African and Uganda for focused feedback sessions about several new GPP implementation tools that are in the works. The new tools take users through the process of developing a strategic community and stakeholder engagement plan. Participants are asked to develop a plan based on concrete goals and objectives such as working with local media to provide accurate information or increase participation of key populations throughout the trial life cycle. The end result is a clearly-defined set of GPP activities that can be evaluated in terms of their impact on research and communities.

AVAC worked with partners with expertise implementing GPP and stakeholder engagements. These include the Uganda Makerere University Walter Reed Program, Uganda Virus Research Institute-International AIDS Vaccine Initiative, Kenya Partners PrEP, Kenya AIDS Vaccine Initiative and the Wits Reproductive Health & HIV Institute in South Africa—all of which have extensive histories of engagement and GPP practices.

GPP is most often implemented in the context of randomized controlled trials. These sessions were especially exciting because they included teams involved in research with different types of designs, such as combination prevention studies and demonstration projects. Perspectives from these groups, including the Uganda Infectious Disease Institute and Liverpool VCT in Kenya, will help make the new tools widely applicable to a wide range of prevention studies. As the HIV prevention field increases in complexity, stakeholder engagement practices need to keep up! New tools, along with an online training course, will be available at www.avac.org/gpp.

Shaping Advocacy on Hormonal Contraceptives and HIV

Lillian Mworeko from ICW-East Africa and an AVAC Fellowship Host Supervisor in 2012 gave a dynamic presentation on the June 11 USAID/FHI 360 webinar “Hormonal Contraception and HIV: What Do the Evidence and WHO Technical Statement Mean for Programs?” Mworeko highlighted the critical importance of addressing women’s reproductive health and HIV prevention and/or treatment needs with integrated services that provide full information on the risks and benefits of all available options—including injectable hormonal contraceptives. The webinar recording is available here. Lillian’s perspective can be heard from about 33 minutes in.

This July, Lillian Mworeko, along with Lydia Mukombe (a 2012 AVAC Fellow) will convene a small strategy session in Uganda on African women’s advocacy on hormonal contraceptives and HIV risk. To learn more about outcomes from this meeting and to share advocacy ideas and questions, email us at [email protected].

Rwandan Civil Society Organizations Learn about PrEP and Combination Prevention

On June 19-20 in Kigali, 15 civil society organizations (CSOs) completed a two-day training on HIV prevention with a focus on pre-exposure prophylaxis (PrEP). The meeting was organized by 2013 AVAC Prevention Research Advocacy Fellow Josephine Kamarebe and her host organization, the Health Development Initiative. 2013 Fellow Peter Michira from Kenya helped convene the meeting, building on his recent experience with a similar gathering in Kenya. Resource people included the UNAIDS Country Coordinator for Rwanda, Dr. Dludlu Sibongile and Dr. Patrick Ndase, Regional Physician for the Microbicide Trials Network.

The CSOs in attendance represented women, youth, sex workers, men who have sex with men, people living with AIDS and more. The session began by gauging participants’ knowledge of new biomedical HIV prevention tools. The meeting was the first time any of the CSO representatives in attendance had ever heard of PrEP. At the end of the session, after learning more about the intervention, everyone agreed PrEP could be a useful tool for those most at risk.

In her remarks, Dr. Sibongile emphasized the continued importance of other prevention options such as condom use and voluntary medical male circumcision. “No single HIV strategy stands alone. They should all be incorporated in order to reach the goal of zero new HIV infections and deaths.”

To follow up, meeting participants agreed to create a CSO steering committee to coordinate future advocacy. Those in attendance committed to passing along what they had learned to other members of civil society who were not present.

The New Times Rwanda wrote a piece about the workshop. And for the latest on PrEP, visit www.avac.org/prep.

South African Media Training on Non-Surgical Circumcision Devices

On June 18, AVAC, the Mail & Guardian’s Bhekisisa Centre for Health Journalism and CAPRISA held a media briefing on non-surgical devices for voluntary medical male circumcision (VMMC). This meeting helped contextualize the recent World Health Organization (WHO) prequalification of the PrePex device and took place in advance of the South African AIDS Conference (SAAIDS) in Durban, South Africa.

WHO pre-qualified the PrePex device at the end of May, and this process has generated a lot of interest in devices as potential innovations for VMMC programs. The PrePex device involves two rings: one placed inside the foreskin on the shaft of the penis, and an elastic ring placed over that one that compresses the foreskin, cutting off the blood supply through pressure.

A full house of reporters was present to hear speakers who included Dr. Ntlotleng Mabena of the South African Centre for HIV and Prevention Studies (CHAPS) and Dr. Thobile Mbegnashe of the South African Department of Health. Dr. Mabena reported that CHAPS plans to run a pilot study of the PrePex device—one of several taking place in countries throughout sub-Saharan Africa. Dr. Mbegnashe said that the government would watch this project closely to learn more about PrePex in the South African context. He told the audience that South Africa is committed to ramping up the procedure, with a goal of 4.3 million men circumcised by 2016.

Mia Malan of the Mail & Guardian and founder of the Bhekisisa Centre wrote a great piece about PrePex and VMMC in South Africa.

PxROAR “Raves” in Europe and the United States

AVAC hosted a two-day training “Rave” at its New York office in April. This annual workshop brings together US-based advocates from AVAC’s PxROAR (Prevention Research Outreach Advocacy and Representation) program for an intensive update on the latest in the field of biomedical HIV prevention research and implementation, and provides a space for advocacy strategizing. This year’s focus was on treatment as prevention and pre-exposure prophylaxis (PrEP).

The recently expanded US ROAR team hails mainly from the 12 US municipalities bearing the highest AIDS burden in the country, as identified by the US Health and Human Services National HIV/AIDS Strategy Operational Plan. ROAR members are already active on the frontlines of the AIDS response in these areas and will be expanding or strengthening their work on treatment as prevention and PrEP. In one initiative discussed at the April meeting, PxROAR members decided to examine available data on rates of uptake of HIV testing, linkage to care, initiation of and long-term adherence to ART. They hope to use information on these “treatment cascades” to guide advocacy at the state and city level. They also plan to work with PrEP demonstration projects and research sites to spread the word about this prevention strategy. For more detail about US ROAR’s pursuits, read the PxROAR Advocacy Guide for US ARV-based Prevention Campaign.

AVAC also hosted a “Rave” for its European partners. This month’s Brussels meeting brought together advocates from Belgium, France, Germany, Italy, Netherlands, Spain and the United Kingdom. Participants discussed soliciting new European ROAR members and strategized around securing and sustaining European funding for research and implementation of ARV-based prevention. Jean-Daniel Lelièvre’s from France’s INSERM provided an update on European research towards a cure. His presentation underscored the need for advocacy directed at national governments and the European Commission to maintain funding for research even during difficult economic times.

Also in Europe, AVAC is collaborating with UK-based NAM/AIDSMAP on a series of webinars for HIV prevention advocates in Europe. On Tuesday, June 11 we will be holding a webinar on HIV cure research. Sign up for our Advocates’ Network newsletter to be notified when more information is available.

Exploring Treatment as Prevention in South Africa

AVAC 2013 Advocacy Fellow, Mickey Meji, has been speaking with South African community members to better understand how treatment as prevention might work for key populations in the country.

The South African government is working to reduce the number of new HIV infections in the country, setting specific targets, but none of these discuss how treatment as prevention (TasP) approaches might impact key populations or address their needs. That is why I chose to gather information about these populations’ experiences and opinions with respect to treatment as prevention and educate individuals living with HIV about TasP so they are able to engage in discussions on the topic and its impact on their communities.

As part of my Fellows project, I spoke with men who have sex with men, sex workers and transgendered people in four provinces in South Africa. They were HIV-positive, negative or unaware of their status. I was nervous at first, not knowing what to expect, but I quickly got the hang of it. I got more comfortable and those speaking with me more readily shared their stories. I found that those taking treatment primarily took medicine for their own health but a few did to reduce transmission to others. Only one person in our consultations mentioned taking PrEP. Feelings were mixed among HIV-negative participants over whether they would use PrEP or not were it available to them.

Over the coming month, I will conclude my community consultations. Then I will work with other AVAC Fellows in South Africa to analyze the information. These findings will guide my future work advocating for the health and rights of these populations.

AVAC is please to announce the call for 2014 Advocacy Fellowship applications. Much more information on the program, including a three-minute informational video, and application details are available at www.avac.org/2014fellowsapps.

HIV Vaccine Awareness Day Commemorated Around the World

Each year on May 18, the global HIV/AIDS community commemorates HIV Vaccine Awareness Day (HVAD). This year, AVAC worked with civil society and research partners from across the globe on a number of community events to mark the date.

From Beijing to Bangkok, through 12 cities in Africa1 around to New York, Oakland and Los Angeles in the United States, HIV prevention advocates organized a range of events to highlight pressing issues facing the vaccine field today. They also took time to recognize the contribution of trial volunteers, advocates, researchers, funders and policy makers working towards a safe and effective HIV vaccine.

Advocates marched. They wrote editorials in newspapers. They spoke on radio and television. They blogged, tweeted and Skyped. Each of the HVAD events included community voices. “One of the highlights from our event in Harare was the conversation on community engagement in research processes. It’s important for us as community advocates to be meaningfully engaged in research at all levels,” said Tendayi Westerhof, organizer of a May 21 event in Zimbabwe, Sensitizing Community on the Value of HIV Vaccine Research.

For a full list of events, visit our HIV Vaccine Awareness Day page, which includes an Advocacy Toolkit with a range of materials breaking down complex AIDS vaccine science.

1 Nairobi, Kisumu and Thika in Kenya; Kampala and Luwero in Uganda; Jos and Lagos in Nigeria; Lusaka in Zambia; Harare in Zimbabwe; and Durban, Cape Town and Johannesburg in South Africa.

Partner Voices: What the Heck is PrEP?

PxROAR member Nichole Little talks about her recent work with PxROAR colleague Robert Newells.

For years here in Oakland, CA, community health advocates have tried everything to get ahead of the curve on HIV transmission. When presented with a new tool, pre-exposure prophylaxis (PrEP), my fellow PxROAR member Robert Newells and I were eager to take advantage. To better understand how our community could implement PrEP we planned a series of local meetings on the subject.

The first of three community meetings took place late last month. Speakers at What the Heck Is PrEP: Biomedical Interventions for an AIDS-Free Generation included Ruben Gamundi from Gilead Sciences, HVTN 2013 Ramp Scholar Angela Scott and Yamini Oseguera-Bhatnagar and Ifeoma Udoh of the Oakland Downtown Youth Center. The presentations were designed as an introduction to PrEP and the clinical trial results of PrEP safety and effectiveness data. Participants included a number of Oakland HIV/AIDS service organizations who discussed the potential benefits of PrEP but expressed concern over the issue of access in a community where many already struggle to receive basic medical care.

The next two meetings in the series will focus on coordinating a response among the larger Oakland HIV prevention community. Later this month we’ll meet with local AIDS service organizations to encourage collaboration in an effort to reach a greater number of people with uniform and accurate information. We’re working to ensure these organizations are familiar with HIV prevention intervention basics and know how to best give this information to their clients and patients.

Our goal is to be sure everyone thoroughly understands the subject matter. It will be at these local organizations that discussions about whether PrEP could work in their community or not. The hope is that the advocates and activists can have informed conversations with clients and other at-risk community members. Robert and I are excited to be able to share this very important and exciting information with our community partners. Oakland is alive and ready to mobilize!