Liz Barr

About Liz Barr

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Danielle Cambell

Danielle Campbell

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What is your name and where are you from?
Danielle Campbell, Los Angeles, USA

When did you join the ACTG? 
March 2013

Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?
The extent of my activism before the ACTG was really around racial and gender equity through a public health lens. I got involved with HIV testing, which hit all of my passions—working with the medically and socially disenfranchised, working with folks who were completely underserved, working with folks who were living with or at high risk for HIV. I’ve always had a penchant for hard science. I learned that at the core of public health is something called social justice, and so that shifted my mindset a bit. You know how scientists can think about everything so technically? Everything is very analytical, it’s either is or it isn’t. And so, to come from that hardcore theoretical framework into something like public health was really a paradigm shift. Then coming into the ACTG, I was the lone woman at our site. The only woman of color at the CAB. You all welcomed me into the fold, and so it really went from just being at
the table as a CAB member. Then, when I heard about the CSS I was like, oh my Gosh, this is it. Really being at the forefront of the science is what I think my sweet spot is. There’s just something about it I love.  It just gets me going.

Describe your community.
My community is all people living with or affected by HIV and other sexual health injustices around the globe.

What are the most important treatment issues to your community?
I want to change the way this conversation unfolds for the most marginalized and vulnerable of folks.

How do you want your work in the ACTG to be remembered?
I’m proud of every last thing I’ve had the opportunity to do. Whether it’s attending a meeting, facilitating a discussion, presenting on a panel, or at a workshop. I want to be remembered as an advocate who dared to fight for women and our rights to have access to and benefit from the work of ACTG and research networks beyond.

What are your future hopes for the ACTG and HIV research?
Intergenerational conversation is one of the things I don’t see happening. I think more “seasoned” generations of activists may be afraid we aren’t going to do it right, or that we don’t know enough to affect change. It took some of us to really come out and say, “We don’t want to erase you, and in fact we want to work with you; for you to teach us the hard lessons learned and support us as we fight to take us to the end! We want to understand and co-advocate with you.” It’s a point of contention for me because I’m a person of color, I’m a lot younger than they are, they have a completely different spin on how to do this advocacy work. They’ve watched generations of people die, whereas I have not. It is my hope that we all come together across race, age, gender, geography, and lived experience to address the root causes of HIV and let those factors lead our work.

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.

Mustafa_Musa_Agwanda

Mustafa Musa Agwanda

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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. 

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.  

Armrelda Yvette

Armeldra Yvette

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What is your name and where are you from?

Armeldra, but most call me Yvette. I’m from St. Louis, Missouri

When did you join the ACTG? 

I’ve been a committed CAB member 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 joined to find out why we were doing so many studies that mostly enrolled men. I wanted to know where were the women? Where were the trans women? Where were the drug users? 

Describe your community.

My community is about two-thirds MSM, 30% women and 5% transgender. I feel like women have the back seat because of the large number of young MSM who are becoming HIV positive. So now, as a woman, it’s hard to feel like we don’t matter. I want everyone to know that H = Human – that means all people with HIV. I want to stop separating people

What are the most important treatment issues to your community?

Affordability of medications, co-infections, and being lost to care. 

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

I want to be a part of getting all demographics represented in clinical trials so we will know if medicines are really helping. We need people who use drugs to know that they still matter. We need to get to zero.

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

The end of HIV & AIDS. The cure!

Angel

Angel Hernandez

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What is your name and where are you from?

I am Angel Hernández, from Puerto Rico.

When did you join the ACTG? (If you’re no longer involved, indicate when you stopped involvement)

I joined the ACTG-CSS in 2012.

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

I joined the Community Advisory Board (CAB) of The AIDS Clinical Trials Unit at the University of Puerto Rico in 2010. I saw a lack of understanding of clinical research in my community. I strongly believe that research needs to reach out to communities of color and translate the complexities of HIV and AIDS research into lay terms that are culturally appropriate.Since joining the ACTG, I have served on the AEC, SASC, CSC, CSS cochair, ITSG, and the Forum for Collaborative HIV Research. I have also been a member of several protocols development teams. I’m proud that I was a member of the team who developed the Feedback to CAB Protocol Draft Feedback procedure. I also collaborated in polling and compiling the CSS scientific agenda priorities. 

Describe your community.

Our community is mostly rural, where we see social, economic, personal, and health struggles of people living with HIV (PLWH). Most PLWH receive adequate HIV health care. Our PWLH community is aging; 72% have 45+ years of age. Beyond the understanding of HIV basics within PLWH, there is still a need for much more of the education about clinical trials. This education needs to be moved beyond the usual stakeholders on HIV.

What are the most important treatment issues to your community?

While we acknowledge the PLWH in our community receive adequate health services, the treatment issues we face are lack of enough clinics with extended service hours; availability of Antiretroviral Therapy (ART) for inpatients at hospitals; availability of integrated primary care; provision of support services; and ageism, stigmas and discrimination.

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

I want my work at the ACTG to be remembered as an active advocate who brought the concerns of participants on clinical trials to the table. I understand the complexities of current research and do my best to address potential participants on the benefits of clinical trials participation in lay terms.

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

My hopes for the ACTG and HIV research are to continue studies on new formulations with less toxicities and easier intake methods. A high priority should be the focus on aging issues, and increased efforts to include underrepresented populations in clinical trials. Of upmost importance is to conduct research on the long-term effects of HIV and ART in long-term survivors.

Allegra

Allegra Cermak

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What is your name and where are you from?

Allegra Cermak, St. Louis, Missouri, USA

When did you join the ACTG? 

I joined the Washington University CAB in 1992 

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

It was a personal kind of thing rather than an academic thing. I mean, I was there because of friends. Not because I didn’t care in the abstract, but I was in ACT UP because of a very specific friend. So I got to a meeting because of a very specific friend. And those people became my friends. And after awhile, almost all my friends were involved in AIDS. I don’t think you’re seeing that so much with the younger generation. 

Describe your community.

I think a lot of staff feel close to several of the community members. I don’t think there is this big gulf in between. The experience I have now, is that there are things that come up that I will be in a meeting, or a staff meeting, or a meeting with leadership, and I’ll be speaking for the community point of view…I was actually on a conference call recently, and I went into something, and I said, “I’m sorry, I know I always sound like all I care about is what the CABs get,” and Ian Sanne said, “No, that’s your job. Your job is to speak for them.” And I was really touched that he thought of me that way. 

What are the most important treatment issues to your community?

I’d like to see the community be interested in the breadth of potential research. There was some resistance in the community when we had TB added to our portfolio, and I thought that was too bad. Because a lot of things in the portfolio are only there because of community. Hepatitis, there was resistance. The bone disease, the community had asked for research into bone disease and was told no, that wasn’t an HIV issue. And then all of a sudden somebody else comes along and says it is and now we’re looking at bone disease. And I just hope that the community makes an effort to look at things they think are affecting them and pushes for there to be research into those issues, even if it’s not the ACTG. I mean, there might be a more appropriate place to do the research, and more appropriate institutes, but I’d kind of like to see them be knowledgeable enough and comfortable enough to propose ideas for research. Because a lot of the things that we’ve done over the years have really come from community pushing it. 

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

I want to reiterate that the ACTG system of community input was the very first time that community was part of the research process. And THAT is a really big deal. Most areas of research still have very little community input. Now, partly it’s possible with HIV because it’s a long-term commitment and it’s a long term illness, it’s not something where I’m cured and I’m gone. But any other institute, any other area of research, that is now involving community, that all started with the ACTG community. I mean to me that is, in a way, that is one of the biggest contributions that we’ve made. Not only because HIV research impacted all other kinds of research because of it being a disease where it’s other things that hurt you–it’s metabolic disease or kidney disease and you’re affected because of your HIV situation. So we’ve had this huge effect on areas of research that you don’t think of as being HIV, but also we’ve affected the way that research can be conducted involving community. 

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

We’re only now starting to get some younger people. And they seem really committed, which is important. They don’t always have that sense of history, because they weren’t there. So that is kind of a problem. And the people who have been around a long time, they used to go out a lot, and they used to organize more activities as a group. They’ve gotten older and they don’t necessarily party until 3 AM, which is maybe not a bad thing, but at the same time, I guess can be a little bit of a generational thing