Portrait

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Flaviah Dorothy Namuwaya

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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

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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 

Gail

Gail

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What is your name and where are you from?

Gail, from Baltimore MD

When did you join the ACTG? 

May of 2014

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

As someone living with HIV, I thought it would be great to learn about research and have the opportunity to give my genuine thoughts on whether a study would be of benefit to our community. In my CAB, we’ve reviewed protocols to decide if they’d be beneficial for our community. We’ve also had a presence at Baltimore Pride to talk about our CAB

Describe your community.

My community includes people of all nationalities, low income folks, people with a history of using drugs, people recently released from prison, and straight as well as LGBTQ

What are the most important treatment issues to your community?

Co-infections, treatment for the trans community, and aging. 

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

Community first! If my work benefits others and makes a change, then it has all been worth it. 

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

I want the ACTG to prioritize participant-centered research: I hope the network listens to the voices of participants and designs research around our needs and wants. 

Julio Barros

Julio Barros

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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!

JanK

Jan Kosmyna

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What is your name and where are you from?

Jan Kosmyna. I’m originally from Toledo, Ohio and now I live in Cleveland, Ohio

When did you join the ACTG? 

I joined in 1991 as a research nurse. I’m now retired and stayed involved with the ACTG as a community member

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

I was an oncology research nurse, but was so touched by the HIV epidemic that I contacted the local ACTU PI and switched careers. After retiring, I wanted to continue my advocacy in a new way.

Describe your community.

We’re based in metropolitan Cleveland, comprised of a wide base of individuals living with HIV

What are the most important treatment issues to your community?

Cure research. Vaccines and treatments. Long acting ARVs and other agents. 

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

I hope people remember me as a nurse with a passion for community advocacy

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

Continued and expanded funding! Also, that someday we won’t need it because we’ll have a cure

Frank_M

Frank Martinez

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What is your name and where are you from?

My name is Frank Martinez and I am from Los Angeles California

When did you join the ACTG? 

I got involved in 2007.

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

I’m an advocate for HIV and TB research. My specialty is HIV, because I’ve been positive for 22 years. 

Describe your community.

I live in a low-income community.

What are the most important treatment issues to your community?

Adherence is a big issue. It can be a challenge for people to take their medications, especially our homeless community who doesn’t always have a place to keep their medications.

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

I would love to be remembered for doing what I love: being an activist, reaching out to people who are living with HIV and trying to give them a more positive mental attitude

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

To end the HIV virus!

KimW

Kimberly Wilson

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What is your name and where are you from?
Kimberly Wilson (Kim). I live in, Boston, MA

When were you involved with the ACTG, and what are some of the things you’ve done as a member?
I have been a member of the ACTG for the last 7/8 years, since about 2011/2012. During that time, I have told people in my community and in other states about studies happening at my local site. My CAB has given me the ability to participate in different community events from telling people about our CAB & studies at community events and had the opportunity to speak on different panels about what we do.

Describe your community
I represent the underrepresented populations in my community: Women of Color, Cisgender women, Latino population & Trans-people. The communities I represent are made up of people whose voices are marginalized most of the time.

Why are you involved in HIV or TB activism?
I see that in the area where I live, women of color are asked to participate in studies but I rarely see them at the table learning about why studies are taking place or the background information behind the study. I see men at those tables all the time. I will be the voice for women. 

Also, I get to learn about different studies that affect people in my community and have the opportunity to contribute my perspective and opinion about studies.

What are the most important treatment issues to your community?
Getting the word out about PrEP is important, especially if we are going to get to zero new infections by 2030. 

How do you want your work in the ACTG to be remembered?
I want to be remembered as someone who was the voice for women and other people that belong to underrepresented population. I want to be known as someone that came and worked to help improve things for everyone.

What are your future hopes for the ACTG and HIV research?
I hope that this work continues, that we can find away to have all populations work together to improve the lives of people that are living with HIV. By doing this everyone will benefit. I hope that we find a way to communicate with people that participating in ACTG research can improve the lives of people living with HIV. 

Estere_Mutero

Estere Mutero

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What is your name and where are you from?

Estere Mutero, from the Parirenyatwa site in Zimbabwe

When did you join the ACTG? 

I have been a member since 2006

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’m a member of one the most affected populations, and also because I am HIV positive. I’ve known my status since January of 1987, after an operation. Finding out was very painful. I was stigmatized by the doctors, my relatives, and even my loved ones. But thanks to the ACTG and the A5175 study that was enrolling women, I am here. 

Describe your community.

My community is now full of advocates and their families. We raise community awareness on child marriage, have support groups for girls and women, and ensure the elderly are not forgotten.

What are the most important treatment issues to your community?

A cure for HIV! We’d also like to see more studies for cancer, TB, and malaria.

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

I want to be remembered for raising awareness about women aging with HIV. I also want to be remembered as an advocate for more studies for women. 

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

Nothing is too difficult if we—the community and the researchers—work hand in hand together. We will reach the cure!!

20SC

Stanford Chimutimunzeve

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What is your name and where are you from?

I’m Stanford Chimutimunzeve from Zimbabwe

When did you join the ACTG? 

2005

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

I’m passionate about the search for an HIV treatment that is free from side effects. I need to push for cure research and will not leave this battle until it is over. I have done many things as a member: I was a co-chair of the Community Scientific Subcommittee, was the community representative to the Inflammation Transformative Science Group, and I am the community rep on various protocols including A5263 and A5356. I’m also on the CAB for sex workers in Zimbabwe and have been actively involved in community mobilization for research education in my community. 

Describe your community.

Zimbabwe has an HIV prevalence of around 13% among the 15-49 age group. We are experiencing high rates of new infections among young women. There are more females living with HIV compared to males. We’re also noticing an increase in the rate of STIs among the15-35 age group. Currently, the national AIDS council is supporting underrepresented key populations such as sex workers, youth, and MSM. MSM are stigmatized in our community. Grandparents—especially grandmothers—have the burden of orphan care. PEPFAR is running a treat-all program in my community. 

What are the most important treatment issues to your community?

Fighting drug-drug interactions for people aging with HIV. Bringing viral hepatitis trials to my community. Addressing complications associated with HIV and long-term ART. Paving the way for cure trials in research limited settings. Ending TB in research limited settings. 

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

If I mentor lots of people, then my impact will be multiplied and my work will be remembered.. 

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

I hope the ACTG becomes the leading treatment research institution in the whole world.

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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. 

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