TB

Lena

Lena

, ,

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

, ,

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

, ,

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. 

FlaviahN

Flaviah Dorothy Namuwaya

, , , , ,

What is your name and where are you from?

Flaviah Dorothy Namuwaya, from Uganda

When did you join the ACTG? 

I joined the ACTG in 2011 and I have been a member since that time.

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

HIV infections are high in my country, mainly among the young people. I am involved because I see a gap on how information around HIV treatment, research and prevention is passed on to the young people. I have focused my activism on bridging that gap. TB is the leading killer of people living with HIV and those that are negative so am pushing and advocating on how best community should prevent it and the treatment.

As a youth representative and a young person, I have been able to organize different meetings with my peers to inform them about the different studies being done by the AGTG. I also attend conference call, refer study participants, and review protocols.  I have even been the face for some studies

Describe your community.

I work with people living with HIV but mainly I work hand in hand with adolescents, young people and teen/young mothers.

What are the most important treatment issues to your community?

Pill burden. Drug resistance. Long acting therapy

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

I want to be remembered has the young person who pushed for the involvement of young people into research and I also want to create a youth friendly environment for young people in the research area.

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

I believe that in the future ACTG will be able to provide better treatment methods and drugs for people living with HIV. I hope HIV research will be able to find fixed doses and long term therapies

George K

George Kukhala

, , , , ,

What is your name and where are you from?

George Kukhala, from Malawi

When did you join the ACTG? 

2001

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

I got involved with the ACTG because I am leading an HIV project at home and so I wanted to make the connection with the ACTG. Since becoming involved, I have continued to advocate for HIV issues in my Christian community.

Describe your community.

My immediate community consists of pastors’ fraternities. My larger community includes church members from all different church groups as well as non-church members. 

What are the most important treatment issues to your community?

The most important treatment issues are TB, malaria, opportunistic infections, cancer, and meningitis. 

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

I want to be remembered for forming nationwide connections between clinical research and other organizations. 

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

To end HIV 

Julio Barros

Julio Barros

, , ,

What is your name and where are you from?

My name is Julio Barros, from Porto Alegre, Brazil. 

When did you join the ACTG? 

2000

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 because I saw a need for community participation in clinical research. 

Describe your community.

My city has the highest incidence and prevalence of HIV in the country even though access to healthcare is universal and HIV treatment and medicines are free. Unfortunately, there are no prevention campaigns. 

What are the most important treatment issues to your community?

TB treatment

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

I want my work to be remembered as part of a global effort towards finding a cure for HIV.

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

Cure!

27MarlonPawandiwa

Marlon Chinyaradzo Pawandiwa

, , ,

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

, , , ,

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. 

31WyclifeE-1

Wycliffe Esendi

, , ,

What is your name and where are you from?

My name is Wycliffe Esendi. I come from Eldoret, Kenya.

When did you join the ACTG?

I have been a CAB member since 2010.

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

I got involved because I wanted to fully participate in the research process. I want to make a difference. So far, I’ve worked with my local CAB to read and understand ACTG protocols. I have organized a number of community outreach events to sensitize the community about TB, HIV, and hepatitis. I’ve also partnered with local community-based organizations (CBOs) to advocate for people living with HIV in Kenya and Uganda.

 Describe your community.

In my community, stigma remains a huge issue, and there are many myths about research. However, together with my CAB members at Moi University in Eldoret, Kenya, we have made great progress towards overcoming these issues through interactions with the larger community. Although my CAB consists of just six members, we are actively involved in community sensitization and outreach work.

What are the most important treatment issues to your community?

The most important treatment issue for us is TB/HIV co-infection. As a sister opportunistic disease, TB still causes a lot of death. In some areas, there is a lack of support for people living with HIV and inadequate access to treatment. Aging is also a vital issue for people living with HIV.

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

I want to be remembered for my work sensitizing the community about HIV and research. I hope to be remembered as someone who made many people aware of how HIV is transmitted, how HIV can be prevented, and why research matters. I want to be remembered as a warrior who fought and won the war against HIV

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

I hope the ACTG will continue doing its important research, to complete its ongoing studies, and to be the leading research group in the entire world.

Mustafa_Musa_Agwanda

Mustafa Musa Agwanda

, , ,

What is your name and where are you from?

My name is Mustafa Musa Agwanda. I’m from Kenya—the Kisimu site. 

When did you join the ACTG? 

I joined the ACTG in 2018

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 as an advocate for HIV/AIDS. The ACTG was the best platform for me to become equipped with relevant knowledge about clinical trials. I’ve disseminated information to my community and encouraged them to participate in many trials. 

Describe your community.

My community is a minority in our home country, where 20% of the population is Muslim. My community’s vulnerability as a minority group made me want to fully initiate them into health care. The HIV rate for Muslims is low, at 2%. Prevention and community-based group approaches with site staff have helped reduce the stigma they experience, as people living with HIV had been considered taboo. 

What are the most important treatment issues to your community?

TB, which often accompanies HIV infection, is a huge issue. Also hepatitis, mostly for women, and aging with HIV. So my focus is to enable the community to understand their status, to accept it, to practice better health, to participate in relevant trials, and to continue treatment. 

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

As someone who helped disseminate health information and the importance of better living. As someone who ensured stigma is kicked out of my community. As someone who enrolled many participants in current and upcoming studies. And for capacity-building work such as organizing health talks from researchers. 

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

I have many aspirations for the ACTG. First, I want clinical trials to achieve 100% enrollment. Second, for each protocol to be undertaken with the community’s full enthusiasm. Third, to recruit and involve community groups to participate in all ACTG/HIV research. Fourth, to continue to analyze consent forms to ensure they are community-centered. In regards to HIV research generally, I want the research community to involve the global community in all their activities, from the start, to harmonize the research with community goals. 

Load More