Neliswa Nkwali

Neliswa is a community advocate. She comes from the Eastern Cape Province where she became involved in politics in high school, as president of the student movement. Eastern Cape was marginalized in terms of job opportunities, so she moved to Cape Town, seeking work during a time of heightened struggle against the HIV epidemic. She joined TAC after listening to their volunteers at a clinic. She was touched when hearing about the statistics of people who had died because of HIV-related illnesses with no interventions from the state.

Fellowship Focus
Neliswa tapped the Treatment Action Campaign’s national network to spread the word about PrEP, creating demand among young women with the ultimate goal of PrEP provision in all public health facilities. She also worked with young women, preparing them for new HIV prevention options such as the dapivirine ring, long-acting injectables and multi-prevention technologies.

In Their Own Words
Advocacy for comprehensive HIV prevention services for the young adolescents, ages 10-17, is still a hard area, especially coupled withThe level of engagement from young women on PrEP is amazing; they are asking questions about PrEP, such as its availability and why the government is taking so long to give young girls access to PrEP. Uptake of PrEP has been increased, and we are starting to see a demand for it, even from male partners. Discussions with young women about PrEP are helping to identify gaps and inform policy. Young women feel strongly to speak out against such gaps.

Materials

Ntokozo Zakwe

Ntokozo is an HIV prevention and women’s health rights advocate. She currently works with Community Media Trust (CMT) as the DREAMS Safe Spaces Facilitator. Her passion for advocacy for women’s well-being has been intensified by her personal experiences as a young woman in South Africa who has struggled to stay HIV-negative, withstanding all the challenges and factors that leave women vulnerable to HIV. She has worked for the NGO Health Systems Trust, serving as a District Administrator in their DREAMS program and was chairperson of the UMgungundlovu District AIDS Council Youth Sector.

Fellowship Focus
Ntokozo’s project sought to influence young women’s access to gender-based violence (GBV) prevention, care and support in their communities as part of a comprehensive HIV prevention package in South Africa. She successfully spearheaded the inclusion of PrEP in centers that care for survivors of violence in KwaZulu Natal. She established a coalition of young women warriors who understand and influence GBV and HIV prevention policies and programs and she advocated for a roadmap for comprehensive GBV services and care in HIV prevention research in South Africa.

In Their Own Words
We must advocate and fight for the vulnerable populations and to ensure that the next generation does not go through half of the things we went through and that they won’t have to fight the same battles we’ve had to fight.

Mandisa Dukashe

During her Fellow’s project, Mandisa became a renowned face of U=U, after launching South Africa’s first treatment as prevention campaign in the Eastern Cape. And she’s well on her way to leading regional advocacy to popularize and formalize the uptake of U=U to promote treatment, adherence and viral load suppression as a way to destigmatize and sexually disinhibit people living with HIV.

Mandisa established alliances with UNAIDS, prominent political leaders and South Africa’s National AIDS Council and collaborated closely with the Southern African HIV Clinicians Society and Prevention Access Campaign to promote U=U. Her work culminated in the organizing of a U=U Satellite session at the SA AIDS Conference and in the formation of the U=U Africa Forum she co-founded with AVAC Fellow Alumni Kennedy Mupeli from Botswana. They continue to advocate for ministries of health to officially implement U=U.

End of Project Summary Video

Media:

Liyema Somnono

Updated January 2024

Liyema is a gender and human rights activist. She is currently employed as a paralegal at SWEAT (Sex Workers Education and Advocacy Task Force) and is a member of the drafting team for the national legislation to decriminalize sex work. Liyema is a member of the Eastern Cape AIDS Council Women’s Sector and serves on the Young Women’s HIV Prevention Council.

Impact

Liyema was a national leader in mobilizing testimonials for public comment in favor of South Africa’s sex worker decriminalization bill (which has been put on hold for now). She also initiated community-led monitoring, highlighting the struggles of young women in rural Eastern Cape to access HIV prevention and family planning services.

Media

Outreach

John Mutsambi

John is the technical lead on HIV and specifically PrEP, at TBHIV Care. He’s involved in preparing new sites for the introduction of PrEP among adolescent girls and young women and preparing advocacy training for PrEP champions at PrEP implementation sites. He is a community engagement specialist whose experience spans 25 years. He has worked cross-culturally, advocating for the active engagement of communities in HIV prevention research and implementation and has developed and managed community engagement programs at clinical trial sites in six countries in eastern and southern Africa.

Fellowship Focus
John pushed for extended PrEP guidelines that include all people at substantial risk of HIV infection in South Africa and for increased access to PrEP. He also worked with PrEP advocates, civil society and clinical trialists to prepare for the results of the microbicide vaginal ring trials, ASPIRE and the Ring Study. His advocacy influenced the Medicines Control Council’s approval of the use of Truvada for PrEP in November 2015. In addition, he was directly involved in the development of the national oral PrEP and test and treat guidelines and accompanying policy. He also did extensive preparatory work in anticipation of the possible rollout of the dapivirine vaginal ring.

In Their Own Words
There’s a need in South Africa for PrEP awareness among individuals and institutions with decision-making authority, and particularly for key populations.

My Work as a Fellow

  • Petition for approval of PrEP: This petition, calling the South African Medicines Control Council to approve PrEP for all individuals at substantial risk of HIV in South Africa, was developed and led by John Mutsambi and other civil society advocates in South Africa.
  • Blog post: John published the blog “In Their Own Voices: South Africans at high risk of HIV Infection demand access to PrEP” on AVAC’s P-Values Blog, in which he amplified the increasing voices demanding for PrEP in South Africa. He also mapped steps to get there.
  • Give us ARVs so we don’t get HIV: This is an op-ed authored by John Mutsambi together with South African advocates in the Mail & Guardian in November 2015 calling on the South Africa government to make the bold step of rolling out PrEP among specific population groups that are substantial risk of HIV acquisition—such as young women and girls, sex workers, gay men and other men who have sex with men (MSM), discordant couples, truckers and people who inject drugs.
  • PrEP FAQ: John developed this PrEP frequently asked questions document to be a living tool to document and help answer questions about PrEP that he heard throughout his engagements with communities.
  • Project poster: This poster is a single-page summary of John’s project that he presented at the end of his Fellowship.
  • Advocates statement on dapivirine ring results: This is a response by South African civil society, including John, to the microbicides dapivirine ring results that were released at CROI 2016.
  • Fellowship summary report: “An enriching immersion into HIV prevention advocacy” is a summary of John’s experience and activities during the Fellowship.

Ntombozuko Kraai

Ntombozuko has been a coordinator of Wellness Foundation’s Young Urban Women project in partnership with ActionAid International. She is a human rights activist focusing on young women and sexual and reproductive health with a special interest in gender-based violence. She has mobilized and educated the community around voluntary medical male circumcision, PrEP, microbicides, clinical trial conduct and more. She has also represented community on the protocol development teams for the vaccine study, HVTN 097, and the microbicide ring study, ASPIRE 020. Ntombozuko is raising three children—two boys and a daughter—and her desire is to see them respect women and to see violence of any kind as a crime.

Why I want to advocate for HIV prevention in 2016?
In South Africa, the HIV incidence rate amongst females aged 15-24 is four times higher than males the same age. There has been a lot done on HIV treatment, care and support, despite the current challenges of antiretroviral stock-outs. Activism has been built for many years and many HIV positive heroes have changed the status quo. We can learn as prevention activists from the ARV rollout but research is still a new concept for many communities. There is a need to educate young women on new biomedical prevention methods, the importance of research and how it’s done so that they will become champions of an HIV free generation.

Thuthukile Mbatha

Advocacy Accomplishments for the Year

Thuthu advocated for PrEP implementation among higher education institutions throughout South Africa, while mobilizing students to become PrEP advocates themselves. With Thuthu’s support, students from the University of KwaZulu Natal, Durban University of Technology, Mangosuthu University of Technology, Witswatersand, University of Johannesburg and Rosebank College started programmes in their respective campuses to create sustainable PrEP awareness. Thuthu also guest-edited an entire issue of Treatment Action Campaign and Section 27’s joint publication Spotlight where she shined a light on young women’s reproductive health.

In Her Own Words

I never knew how important advocates are from the invention of HIV prevention products until they get into the hands of end users. Also, the students’ eagerness to be part of my advocacy project was very heart warming. They came up with different strategies to try to reach other students to share the information with them. They led by example, initiating on PrEP so that they can share their experiences with other students through the peer education programme. That was one of many highlights for me.

Materials

Nomfundo Eland

Nono is currently focused on adolescent girls and young women’s programming, women’s sexual and reproductive health and rights (SRHR) and HIV prevention research. She has extensive experience advocating for SRHR, health care and against gender-based violence. Nono is raising her son and nephews to respect women and to see violence of any kind as a crime. She is also a strong advocate for affordable interventions for women in developing countries, including access to HPV vaccines and different HIV prevention options. She was the National Coordinator for the Women’s Rights Campaign at the Treatment Action Campaign (TAC) in South Africa.

Fellowship Focus
Nono brought her extensive community organizing experience to community engagement in key prevention topics, including male circumcision, PrEP, clinical trials conduct, microbicides and other issues. Her project reenergized advocacy around HIV prevention in a feminized epidemic in South Africa and engaged national stakeholders around HIV prevention research.

In Their Own Words
Biomedical prevention research is complex. It includes many scientific and research terms that are hard for the general public to understand. Finding ways to effectively communicate what research is being done and what the results mean needs to be a big part of HIV prevention efforts.

Victor Lakay

Victor is a community activist with a strong desire to build a society that offers a better and just life for all. At the time of his Fellowship project, he was a member of the Lesbian and Gay Equality Project (formerly the National Coalition for Gay and Lesbian Equality), an organization that challenged discriminatory provisions that governed South Africa and won equal rights for LGTBI persons. He was also a member of the Alternative Information & Development Center (AIDC), an organization contributing to the development of alternatives to the challenges of the currently dominant global economic system. As a student, he actively participated in the fight against apartheid, something in which he takes great pride. He has previously worked as a consultant for the Parliamentary Monitoring Group, the Equality Project and the South African National AIDS Council.

Fellowship Focus
Victor brought extensive community organizing experience to projects related to prevention research advocacy. His project focused on male circumcision, microbicides, and PrEP. He effectively advocated for the rights of people living with HIV/AIDS (PLWHA) and their right to access a comprehensive prevention package of care. He also worked to develop leaders among PLWHA and women within the Treatment Action Committee who advocated for the right to access quality social services, treatment and prevention. Additionally, he worked toward improving science-based knowledge on health, health rights and policy literacy through research, and toward strengthening advocacy and leadership at the local, district and provincial levels in South Africa.

In Their Own Words
I’m learning all the time. And I’m not learning only from my mentors but also from those who have elected me to this role of leadership because I constantly have to figure out, “What is it that is expected of me as a leader? And how do I deliver on that?”.

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: