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:

Yvette Raphael

Yvette is a co-founder and co-director of Advocacy for Prevention of HIV and AIDS (APHA) in South Africa. She is a human rights activist with a focus on people living with HIV (PLHIV), young women and lesbian, gay, bisexual, queer and intersex (LGBTQI) communities. She became involved in HIV/AIDS advocacy after she was diagnosed with HIV in 2000. Since then, she has worked in HIV/AIDS education in the safety and security sector and founded two empowerment and support organizations for PLHIV. She has worked on award winning programs, including Brothers for Life, Scrutinize, Four Play, Intersexions and ZAZI.

Fellowship Focus
Yvette helped to empower young women in South Africa to demand HIV prevention interventions designed for them. She worked with the ZAZI training program to incorporate information about new prevention technologies and to mentor young prevention advocates. She also worked with the media to overcome “HIV fatigue” and promote accurate messages about prevention.

In Their Own Words
You’ll hear a lot of people say Depo is Africa’s most popular family planning method. But that’s not actually true. ‘Popular’ implies people choose Depo over other contraceptive options because they like it more… While DMPA is the most widely used long-acting method in many countries, including South Africa, the reality is that women are, every day, dependent on clinics where it is the only contraceptive choice on offer.

Media

Materials

Ntando Yola

Ntando Yola is the community engagement lead at the Desmond Tutu HIV Foundation (DTHF). In this role, he has worked with various national and international HIV prevention networks. Ntando is also involved in HIV prevention advocacy nationally through APHA as well as through the Vaccine Advocacy Resource Group (VARG) and Africa free of New HIV infections (AfNHi). His advocacy has involved working with various community stakeholders, developing and implementing community education programmes and forming partnerships with health service providers and other community-based organizations as key stakeholders in HIV prevention research. His work is driven by an interest in effectively engaging and involving communities as part of achieving an end to the AIDS epidemic.

Fellowship Focus
Ntando strengthened community engagement efforts within trial sites and communities, influenced relevant policies and guidelines and explored key ethical issues in trials. He facilitated the development of strategy for national stakeholder engagement in clinical trials for South Africa, using the Good Participatory Guidelines as the framework for how research teams engage communities during the research process. He held consultations with a wide range of key stakeholders, including trial communities, HIV prevention advocates, ethics committees, policy makers and national government. He influenced changes on key ethical issues in the conduct of trials, such as post-trial access and commitment by researchers and government, and also influenced changes in necessary policies and guidelines. He sought a consolidated approach toward continuing stakeholder engagement during and beyond HIV prevention clinical trials.

In Their Own Words
The efforts of clinical research from basic concepts to large-scale trials are extremely important investments towards finding health solutions. All forms of medical treatment we enjoy today are a different type of miracle that takes a lot from varied scientific fields, communities who take part, civil society, media and most importantly people and governments who fund this work. Every individual in the world has a role to play and more people are needed to play that role so we can reach a solution faster.

Media:

Bukelwa Sontshatsha

Bukelwa has been involved in the fight against HIV/AIDS for close to two decades, from volunteering in community-based support programs to coordinating multisectoral teams focused on HIV/AIDS prevention. She is especially passionate about ensuring that voices of persons living with HIV/AIDS are meaningfully represented at every level of decision-making. She previously worked as a health promotion officer for a local municipality, ran a support group for the Red Cross Children’s Hospital for parents and children who are HIV-positive and sat on the Community Advisory Board of the Desmond Tutu HIV Foundation, the board at Phakama Community Health Project and the St. Luke’s Hospice board.

Fellowship Focus
Bukelwa listened to and documented voices of PLHIV in South Africa in considering the feasibility of rolling out treatment as prevention there. Her perspectives helped to inform and influence policy and programming to ensure better service delivery for PLHIV in South Africa.

In Their Own Words
Treatment as prevention has always been on the South African agenda since the HPTN052 results were announced, but what was missing was inclusion of the voices and preferences of PLHIV in its implementation. Working with communities and advocates helps to lift their issues and positively impact programming. We should do more of it.

Brian Kanyemba

After ten years as advocate, Brian’s focus is now on HIV prevention and HIV funding in the African region. Brian’s advocacy has been directed toward obtaining better access to HIV education and prevention tools for the communities that need them the most. Before becoming a fellow, he brought this experience to his work at the Desmond Tutu HIV Foundation, where he serves as a research assistant for the Men’s Health division. In this position, Brian worked daily with participants on the Global iPrEx study, and he has used this opportunity to refine his perspective on HIV biomedical prevention options.

Fellowship Focus
Brian’s project brought attention to underrepresented voices of the MSM community and fostered their engagement in HIV prevention research. He helped bring their ideas, opinions, concerns and knowledge to the question of how best to scale up PrEP as an HIV prevention intervention. He worked with service providers, community leaders, policy makers and other stakeholders to encourage them to involve MSM in future prevention programming and to increase their overall focus and inclusion of this vulnerable community in their work, research and/or services. Brian allowed for the mainstreaming of guidelines, national policies and laws to better reflect the opinions raised by MSM.

In Their Own Words
PrEP programs can be started quickly using existing facilities and staff. MSM are willing to pay for PrEP if delivered at an affordable price. Active education and outreach are needed to reach diverse groups of MSM for PrEP.

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.

HVTN 097

CAPRISA 008

IPM 032 (DREAM)

IPM 027/ The Ring Study