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.

Peter Mogere

Peter currently oversees several HIV self-testing (HIVST) and PrEP delivery studies being implemented in collaboration with government and private facilities. He is a regulatory affairs specialist in the conduct of clinical trials and currently works as the pharmacy lead and project coordinator for several studies as well as the lead of a regulatory docket. Peter is also the Secretary General of the Kenya Pharmaceutical Association (KPA) and a health research advocate.

Fellowship Focus
Peter has championed HIVST as part of the PrEP package and the first 90 (out of the 90-90-90 treatment targets). He helped to successfully draft and shepherd the launch of Kenya’s HIVST guidelines and PrEP Framework inclusive of HIVST. He then led the sensitization of health workers and demand creation for self-testing through the media. Peter also lobbied the government to provide HIV self-testing kits free of charge with support from Global Fund and PEPFAR and in the private sector at cost. With the guidelines in place and government commitment to HIV self-testing scale-up, Peter continues to advocate for the broader rollout of the kits by the government, monitoring the processes of both domestic and external funding for the continuity of the programs. As a result of his work, he’s now coordinating a demonstration project at his host organization in Thika to explore how HIVST impacts PrEP uptake.

In Their Own Words
Advocacy isn’t about just making noise, but helping to find solutions. As a healthcare provider with experience in research and PrEP delivery, I helped translate the scientific jargon to simple, understandable language that could be understood by different groups. By providing the right information on the products and different strategies, I helped advocates to champion for issue-based campaigns.

Materials

Bathabile Nyathi

Bathabile still works with the CeSHARR sex work program in Zimbabwe and is also the vice chairperson and co-founder of a sex worker-led organisation, Women Against All Forms of Discrimination (WAAD). She started sex work at the age of fourteen. After noticing that most sex workers believe that they are already HIV positive or will eventually become so because of the nature of their work, she dedicated her life to empowering her peers. When she tested HIV-negative, she started taking PrEP and has made it her calling to mobilize sex workers to seek and access PrEP and other relevant services to remain healthy.

Fellowship Focus
Sinikwe and Bathabile’s work together focused on sex workers’ acceptance of PrEP ahead of Zimbabwe’s national rollout. They worked with young sex workers, conducting over 50 community dialogues across the country, joined the Ministry of Health’s Technical Working Group on PrEP and engaged health workers, the police, church members and male partners to pave the way for culturally competent PrEP services, free of harassment and/or discrimination. They spoke on radio talk shows and drafted a position paper targeted at the Ministry of Health to emphasize the need for PrEP for young women and adolescent girls as an integral part of Zimbabwe’s comprehensive HIV prevention response.

In Their Own Words
I had feared to be stigmatized or that some would not allow their young women to attend the dialogues I organized, as a sex worker. But I think I managed to keep the demand on PrEP and I ensured that I provided support to everyone who needed information about the pill.

Materials

Sinikwe “Nikki” Mtetwa

Sinikwe is a passionate women’s health and rights advocate who has been involved for more than a decade on issues around HIV and sexual reproductive health and rights. She has done extensive work with female sex workers at CeSHHAR to ensure that they are part of HIV interventions developed for them. She is currently involved in the AMETHIST Study at CeSHHAR Zimbabwe.

Fellowship Focus
Bathabile and Sinikwe worked together and focused on sex workers’ acceptance of PrEP ahead of Zimbabwe’s national rollout. They worked with young sex workers, conducting over 50 community dialogues across the country, joined the Ministry of Health’s Technical Working Group on PrEP and engaged health workers, the police, church members and male partners to pave the way for culturally competent PrEP services, free of harassment and/or discrimination. They spoke on radio talk shows and drafted a position paper targeted at the Ministry of Health to emphasize the need for PrEP for young women and adolescent girls as an integral part of Zimbabwe’s comprehensive HIV prevention response.

In Their Own Words
We also learned that using every available resource tool when advocating is beneficial, e.g., the media, as targeted groups and the communities in which they live are reached with information. Personally, when I am passionate about something or against some injustice, it usually end in doing things in anger or haste. Now, as an advocate, I have the capacity to clearly map the way I want to deliver certain information to exert change. I now recognize the importance of identifying a gap, a challenge, a hindrance etc. to change and deal with it.

Materials

Kennedy Mupeli

Kennedy is currently engaged in science literacy training for civil society organizations for people living with HIV and in national U=U campaigns. He became involved in grassroots AIDS activism after going public about his HIV status in 1998. Although not a scientist, he is passionate about biomedical research. He has been involved in efforts for greater involvement of people living with HIV and more recently on issues of access to treatment and biomedical prevention interventions.

Fellowship Focus
Kennedy formed the first PrEP advocacy coalition in Botswana: PrEP Watch Botswana. He joined the Ministry of Health’s PrEP Technical Working Group, where he catalyzed the drafting of PrEP guidelines and funding for PrEP implementation. He worked closely with communities to introduce PrEP information across the country, generating awareness, demand and advocacy for its implementation. He also identified and supported a PrEP ambassador to champion PrEP and be the public face of PrEP. As a result of his successful PrEP campaigning, Kennedy was invited to write a weekly column on HIV for the Midweek Sun newspaper. His coalition continues to advocate for PrEP rollout as well as the dapivirine ring and other biomedical prevention. He also helped to set up a pioneer health journalists coalition in Botswana to keep HIV/AIDS and other health issues at the forefront of their coverage.

In Their Own Words
During my early years of advocacy, I was exposed to a more radical advocacy approach. I have since learned that sometimes diplomacy is an equally effective approach to influence change. You only need a plan with realistic objectives and evidence. Intensive literature review is also vital for a successful advocacy project. I had all this and it worked for me. I was able to work within the ranks of the Ministry of Health (technical working group) to influence change, and change has happened and is still happening.

Materials

Sylvia Nakasi

Sylvia is currently the Acting Executive Director for the Uganda Network of AIDS Service Organisations (UNASO). She has extensive experience working on HIV prevention, research advocacy and program development and management, with specific focus on project cycle management, resource mobilization, capacity building, networking and advocacy at the community, district, national and international levels.

Fellowship Focus
Sylvia documented lessons learned about VMMC for HIV prevention implementation and influenced its rollout in Uganda. She also explored and documented perspectives regarding ARV-based prevention in Uganda in order to prepare for the possible introduction of pre-exposure prophylaxis (PrEP), 1% tenofovir gel and treatment as prevention.

In Their Own Words
In my opinion, as advocates it’s our duty to bridge the knowledge gap in our communities, sensitize the communities and help change their attitudes and behaviors towards interventions that would most benefit communities to make prevention and treatment a reality.

Sylvia’s Advocacy

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?”.

Charles Brown

Charles is the Executive Director of Preventive Care International, an NGO he founded after his Fellow’s project, and still works on various PrEP efforts at his host organization, the Infectious Diseases Institute. At the time of his project, he had been associated with HIV clinical trials for more than seven years. He worked on the HSV2/HIV study, Partners PrEP study and the Partners Demonstration Project. His focus was on HIV counselling and testing and adherence support and community education for serodiscordant couples and key populations.

Fellowship Focus
Charles advocated for the rollout of PrEP with high-risk groups. He worked with Uganda’s AIDS Commission to include PrEP in its National Strategic Plan and laid the groundwork for the development of guidelines for PrEP rollout.

In Their Own Words
I’m happy that it’s no longer “Charles Brown for PrEP”, but it’s now civil society for PrEP, where I’m part of the civil society.

Charles’ Media Advocacy:

Teresia Njoki Otieno

Teresia currently works for the Center for Multicultural Health, a community-based organization in Seattle, where she provides direct services to African-Americans and African immigrants and refugees. She’s a member of the ATHENA Network, the Ryan White Planning Council and the US People Living with HIV Caucus steering committee. She is an accomplished advocate for HIV-positive women, with experience in counseling, testing and community engagement. She is living with HIV and in a discordant relationship. She has fought for the sexual and reproductive rights of women in Kenya and in international forums, and has worked with other women living with HIV to fight their forced and coerced sterilization.

Fellowship Focus
Teresia worked with discordant couples and sex workers to shape the PrEP agenda in Kenya by increasing their participation in HIV prevention forums and committees at the county and national levels. She worked closely with Fellow Everlyne Ombati to ensure that new HIV prevention options for women, including PrEP, are part of the conversation in discussing Kenya’s future planning for prevention. She documented perceptions of PrEP in the target communities and her advocacy informed the inclusion of PrEP in the Kenya National Strategic Plan. She also engaged in national and international discussions and influenced research to better understand the possible connection between hormonal contraceptive use and HIV risk. She has been directly involved in conversations before, during and after the ECHO trial.

In Their Own Words
We’ve seen major breakthroughs in HIV prevention, treatment and even cure research over the last several years. Science continues to deliver – now it’s time for us as advocates, service providers, governments and funders to effectively implement what’s been delivered to us as we work towards new possibilities for tomorrow.