South Africa

CebisileN

Cebisile Nkosi

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What is your name and where are you from?

My name is Cebisile Nkosi. I am from Durban, South Africa. 

When did you join the ACTG? 

I joined the ACTG in 2012 and have been involved for the last 8 years.

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?

I’m involved because of family members who died from AIDS related complications. I lost four family members during my first year at university. I was studying marketing at the time and didn’t know much about HIV. My family members told me their stories and inspired me change my course of study to learn more about HIV, so I could help them. Now I am inspired to help others.

Describe your community.

I focus my energy on youth. Much of my advocacy work is aimed at helping youth who are impacted by unplanned pregnancies and perinatal HIV transmission. 

My community also has problems with woonger (a drug) and antiretrovirals (ARVs). Many people have been robbed of their ARVs by people who are smoking woonger. It is hard for people to afford their treatments. 

What are the most important treatment issues to your community?

Access to ARVs is the most pressing treatment issue in my community.

How do you want your work in the ACTG to be remembered?

I need to be remembered as someone who supported my family and community. I want to be remembered for making my community better than it was before, because of my involvement with the ACTG.

What are your future hopes for the ACTG and HIV research?

My hope is to get all of our communities the best treatment. My hope is to cure every illness and challenge we are facing. I hope the ACTG continues to help our communities be better than before—healthier, more knowledgeable, and more involved. 

Lena

Lena

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What is your name and where are you from?

My name is Lena. I’m from South Africa

When did you join the ACTG? 

2015

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?

I was invited to a CAB meeting. I got involved with the ACTG after that, and started to tell my community about studies. Most of them didn’t know about the different ACTG studies. 

Describe your community.

My community is very uneducated and poor. But I go out there because they need to be enlightened about what can be done for them. I also go with my fellow CAB members to local clinics and day hospitals. We do role playing there so that people can understand things better. 

What are the most important treatment issues to your community?

I think it’s all the complications of ARV medications, because most of the time that’s what people complain about. Also TB is a big issue. 

How do you want your work in the ACTG to be remembered?

They must remember me by going on with community work, just continuing to get the message out there.

What are your future hopes for the ACTG and HIV research?

My future hope is that they find a cure. 

MosesWitbooi

Moses Witbooi

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What is your name and where are you from?

Moses Witbooi, from South Africa

When did you join the ACTG? 

2017

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?

I joined the ACTG CAB to serve the community, and was invited to the ACTG meeting. It really caught my interest, and now I am interested to learn more. I want to empower my community.

Describe your community.

My community – Cape Town – is in the Western Cape of South Africa. My CAB serves Belhar, Elsies River, De Noon, Fisantekrall, Ravemsmead, and Uitsig.

What are the most important treatment issues to your community?

TB and AIDS

How do you want your work in the ACTG to be remembered?

I want to be remembered for making a difference in my community. 

What are your future hopes for the ACTG and HIV research?

My hope is a community without HIV, AIDS, and TB. 

Thuso

Thuso

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What is your name and where are you from?

I’m Thuso from Rustenburg, South Africa, which is in the northwest province. 

When did you join the ACTG? 

2017

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?

I wanted to learn more about different communities around the world and to improve my advocacy skills. As a member, I’ve been able to educate new members about the importance of their role in the GCAB.

Describe your community.

I am from a multi-cultural community. Because of the platinum mines, you can find all 11 South African languages in our community! We are well-informed when it comes to HIV and TB infection. We are able to access health services without fear and have integrated health services provided by different organizations. The level of stigma and discrimination is low. 

What are the most important treatment issues to your community?

First, that people are able to access ART and TB treatment at the local health facilities. Second, that medications for chronic infections are available. 

How do you want your work in the ACTG to be remembered?

I want to be remembered as the most influential part of the group 🙂

What are your future hopes for the ACTG and HIV research?

My hope is that the influence of advocates and activists is noticed and respected. Without advocates and activists, there is no research. 

27MarlonPawandiwa

Marlon Chinyaradzo Pawandiwa

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What is your name and where are you from?

My name is Marlon Chinyaradzo Pawandiwa, from Cape Town, South Africa

When did you join the ACTG? 

2014

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?

I became involved as a representative of an NGO in the Task Applied Science CAB. I eventually joined the GCAB. My reason for joining was to bring change to the community and correct misconceptions about research and HIV. As a member, I have bridged the gap between researchers and the community

Describe your community.

My community is a diverse population that comes from different areas. We are one of the poorer communities in the area, with high crime rates and many gangs. However, we mobilize around many projects to help improve the community and our livelihoods. 

What are the most important treatment issues to your community?

Shortening the period of TB-HIV treatment. We also face non-adherence. Safety is an issue – many patients are robbed of their medications. Finally, there is concern about the side effects of medications. 

How do you want your work in the ACTG to be remembered?

I want to be remembered as part of the team that contributed to finding a cure for HIV. I want to be a part of the team that eradicates the virus. I want to provide information to my community to help them be more aware of what’s happening in the ACTG and also to help the ACTG be more aware of my community’s needs.

What are your future hopes for the ACTG and HIV research?

Like most people, my hope is that we find a cure. But before that, my hopes are for shortened TB treatment and increased use of long acting HIV treatments, like injectables. 

Roselieswartz

Roselie Swartz

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What is your name and where are you from?

I am Roselie Swartz, from Cape Town South Africa

When did you join the ACTG? 

August, 2016

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?

My interest in clinical research led me to become a member. I’ve worked to expand the membership of our CAB by recruiting new members and also to introduce the work of the ACTG to the community at large

Describe your community.

We are a disadvantaged area. We face HIV, AIDS, TB, STIs, substance abuse, teenage pregnancy, unemployment, school dropout, domestic violence, and many other challenges. My community has the second highest rates of HIV in the world. Poverty is the scourge of the day. There is no work, and prostitution is common. Many babies suffer from malnutrition and many women use alcohol and drugs during pregnancy, which has negative outcomes for the babies. 

What are the most important treatment issues to your community?

Drinking, drug abuse, and school dropout. 

How do you want your work in the ACTG to be remembered?

I want to be remembered for increasing awareness. 

What are your future hopes for the ACTG and HIV research?

I hope the ACTG reaches more and more communities so that more people can be involved in research and then benefit from the cure. 

Belinda

Belinda Ameterra

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What is your name and where are you from?

Belinda Ameterra: Worcester South Africa

When did you join the ACTG? 

2014

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?

I was first introduced to Boland Research Advisory Board as a community activist and volunteer worker. When I was elected chairperson of that board in 2014, I was also nominated to attend the ACTG. Within the ACTG, I was elected as a member of SMCC, representing the CAB on the conference calls. I am also a member of the Community Scientific Subcommittee, serving as Co-Chair. I also serve on Community Partners.

Describe your community.

Worcester is surrounded by grape farms. We are a developed community but could still do more for youth development. Unemployment and lack of youth activities are the major problems of the day. We have a very high rate of people living with TB and HIV in our communities. And because of unemployment, many patients fall in default—not using their medication because of poverty. We also have a big percentage of people with disabilities. Even though we have schools for people who are blind, deaf, or in wheelchairs, we lack public accommodations for these people. Housing is a major issue, and crime is at times very high. 

What are the most important treatment issues to your community?

Because we are also a rural area, people in our communities do not have access to all the needed resources. Stigma remains a large issue and impacts the way patients are treated. 

How do you want your work in the ACTG to be remembered?

On a billboard about my contribution combatting TB and HIV in my communities that encourages participation in research and also encourages those who have defaulted on treatment to resume treatment. 

What are your future hopes for the ACTG and HIV research?

I hope that people are empowered to understand their health conditions.

Benedict

Benedict

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What is your name and where are you from?

I’m Benedict from Durban, South Africa. I’m originally from the village of Embuthisweni. 

When did you join the ACTG? 

2018

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?

Since I live openly with HIV, I am interested in better treatment and prevention tools. I want to save my country 

Describe your community.

I come from a province that is an epicenter of HIV, TB, cancer, and STIs. My community is very culturally diverse. We are a rural area with a mix of religious and superstitious beliefs. 

What are the most important treatment issues to your community?

Together with other communities, my community is working to ensure that people living with HIV get started on ART for treatment and prevention. Currently in my province, there are 2 million people on treatment thus far out of the 3.1 million people living with HIV. 

How do you want your work in the ACTG to be remembered?

As a strong advocate and activist for people living with HIV and other chronic diseases. I want to be remembered as someone who is very passionate about research and new scientific developments. 

What are your future hopes for the ACTG and HIV research?

I hope that the ACTG will always remain a home for innovative minds, and that the network will continue to be respected for its ability to listen to the community.