Liz Barr

About Liz Barr

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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. 

CAB quilt

Pitt CRS

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What is your name and where are you from?

We are the Community Advisory Board (CAB) of the Pitt Treatment Evaluation Unit. Based in Pittsburgh, PA, the mission of the CAB is to promote community participation, improve participant care, and provide a role for affected community members to advocate for safety, relevance, and ethical consideration regarding clinical HIV/AIDS research.

When were you involved with the ACTG?

This varies. Some of us have been involved since the CAB’s founding in 2000. Our ranks come and go due to displacement, illness or death. For most of us, the common denominator is that we’ve have been living with the virus and have participated as patients of the Pitt Treatment Evaluation Unit. Others have been involved in various prevention studies, or serve as clinical investigators or recruiters. In any case, our collective knowledge of the disease is harnessed to make impactful decisions on studies under a distinct community lens.

Describe your community.

We represent the intersection of multiple communities involved in HIV/AIDS research and activism. While many of us would identify with and/or closely with the LGBQTIA+ community, we are also young, old, people of color, married, single, longtime survivors, people with disabilities, children of immigrants, transplants to Pittsburgh, allies. We have witnessed our friends, families, and chosen families succumb to the disease. We are proud and angry and sometimes a little too tired to be either. We welcome and respect everyone who joins our motley crew.

Why are you involved in HIV/AIDS activism?

All of us share a passion for this type of work. Personally and professionally, we are involved in HIV/AIDS volunteer efforts and expressly interested in giving back to the communities that support us. Moreover, as former patients and participants, we are proud to share our unique perspective on how clinical trials operate and their effects (e.g., marketing, implementation, recruitment, compensation) on the community at large.

What are the most important treatment issues for your community?

Our role in reviewing clinical research and staying abreast of related issues is closely tied to how we promote treatment and maintain a high quality of life. We want those who have been infected (longtime and new) to stay healthy. We want an abundance of good, affordable treatment options. We want education and awareness of HIV/AIDS to combat the past, present and ongoing stigma that plagues the communities we live in and beyond. We want to evangelize that undetectable equals untransmittable, and that treatment can function as one of the most potent forms of prevention.   

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

We’d like to be remembered for serving as a vital cog in the reduction of suffering, any burden that those living with/in fear of HIV/AIDS go through every day. We look forward to the day that we have a functional cure for the disease. Until then, we are resolute in our position to aid these efforts by supporting treatment options and reducing rates of transmission. We also sincerely hope that our voices emphasize how clinical trials must be accessible and implemented equitably, that those historically underrepresented in this space are able to receive treatment and care without stigma.

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

We hope that ACTG remains at the forefront of understanding and leveraging the immune system to develop a real cure for HIV/AIDS. Ideally, we hope to no longer exist once the virus is successfully obviated, with resources allocated to other pressing areas of research.

Willian

Willian Amaral

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What is your name and where are you from?

My name is Willian Amaral, I am from Rio de Janeiro, Brazil.

I am part of CAB CCA-INI-Fiocruz.

When did you join ACTG?

I started attending CAB meetings in 2009.

Why did you get involved with ACTG and what are some things you did as a member?

I am HIV positive, AIDS activist and community educator. I have always been interested in clinical research on HIV / AIDS and I have been involved in CAB to get updates on ongoing studies and to give feedback on future protocols that will be implemented at the research center. I always try to disseminate the results of the studies to HIV-positive people in my community.

Describe your community.

My community is composed of seropositive and seronegative people, this group includes MSM, Gays, transgender women and cisgender people.

What are the most important treatment issues for your community?

Access to new ARV drugs that are approved by ACTG network studies and the implementation in the country (Brazil) of the knowledge and technologies developed in the protocols.

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

I want to be remembered as a member who was part of the global response to the AIDS epidemic.

What are your future hopes for ACTG and HIV research?

My main hope is to cure the HIV infection and I wish it to happen in one of the ACTG studies.

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Wycliffe Esendi

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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.

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Liz Barr

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What is your name and where are you from? 
Liz Barr, and I’m from Baltimore, Maryland, USA 

When were you involved with the ACTG?
I joined my local CAB in 2009. At that time it was the Institute of Human Virology/University of Maryland. I was a CSS member from 2011-2015. I joined the Johns Hopkins CAB in 2017 and also started my second term on the CSS in 2017. I recently resigned from the CSS due to a work conflict.

Describe your community
I’d say my community is women. And I mean that globally, not just in Baltimore. My community includes all women—cisgender women, genderqueer and transgender women, mothers and not-mothers and stepmothers, women who breastfeed and women who bottle-feed, straight women, queer women, women of color, white women, and so on. I really believe that the diversity of experience that women bring to activism, and the resilience that we develop sometimes just by surviving, can make us incredibly effective advocates. 

Why are you involved in HIV/AIDS activism?
Good question. I’m always a little surprised to be as involved in the science part of things, since I am not “science-minded.” But I found my way to this work through a commitment to social justice. I think I stay involved because we aren’t done yet, and the people I met have inspired me to be a better activist, and to find creative ways to problem-solve. We still have so much to do as far as access—to trials, to treatments, to knowledge, to self-empowerment, to health literacy—and awareness of the biomedical advances that have already happened. It’s really exciting to be on the forefront of the research that the ACTG does, and the people I have met here (community, staff, clinicians, scientists, all of them) are really the best and smartest people I know 

What are the most important treatment issues to your community?
As a new-ish mom, pregnancy and breastfeeding are on my mind a lot. I remain concerned about how to include pregnant and breastfeeding/pumping women in clinical trials so that we can generate data on drug safety during these key life events. I’m also really aware of the co-morbidities of gender-based violence and trauma. We know that violence and trauma impact health and adherence to treatment, and I believe that clinical research needs to continue working to incorporate social-behavioral components so we can understand and address violence and trauma.  

How do you want your work in the ACTG to be remembered?
I want to be remembered as a part of Team Women and someone who played a part in this decades long effort to make ACTG research accountable to women. That has been such a long slog, and I’ve only been in the fight for a fraction of the time. But when we get there, I hope people remember it as another example of how community can rewrite the whole research process. Mostly though, I want my colleagues to remember how much I love them, and how much they inspire me. 

What are your hopes for the ACTG and HIV research?
I hope that the ACTG continues incorporating social science measures and looking for ways to account for all dimensions of participants’ lives, including violence and trauma. I hope that the ad hoc community group working on women’s enrollment—Team Women—is successful in achieving its goals (increased and sustained enrollment of women in all studies and the funding to make that happen). I hope that more studies include primary or secondary objectives related to sex and gender. I hope that the ACTG continues finding ways to fund efforts like the WOW [Women’s Outreach Worker program]. Of course, I hope we work ourselves out of a job in HIV and TB, but more than that, I hope non-HIV researchers start to duplicate the ACTG’s model of how to do community-centered research. There is always room to strengthen community engagement, but the ACTG has a powerful infrastructure that can be leveraged really effectively to fulfil the network’s mission. 

17Manoj-Pardeshi

Manoj Pardeshi

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What is your name and where are you from?

I am Manoj Pardeshi. I am from a beautiful evergreen small town from Pune, surrounded by Sanhyadri mountain range, western Maharashtra, India.

When did you join the ACTG? 

I have been involved with the ACTG since 2010 and now feel like a close member of ACTG global family. In the first few years I was in learning stage and hesitating to be actively involved, but because of constant support and motivation from ACTG friends and my interest in science, I organically increased my active involvement when I was first given the opportunity to serve as a CSS member four years ago. 

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

I became an advocate in the mid-1990s, as antiretroviral therapy was not freely available in India. Since that time I’ve done work throughout India on advocacy, network and capacity building, ethical, and scientific research promotion, and positive prevention. Promotion of scientific and evidence-based research and newer treatment options with less side effects have become an important priority. I became involved with the ACTG because community involvement and understanding of science remains very limited and we need people who can play the role of facilitator, bridging between grassroots community, sciences and researchers. This is the motivation for me to be part of ACTG—to be that bridge. 

Describe your community.

I am actively engaged with people living with HIV, people who have TB/HIV coinfection, and people living with HIV hep-C co-infection.

What are the most important treatment issues to your community?

Understanding research in lay language to increase their ownership and active participation. Identify and communicate community needs to researchers to increase quality of life. And most important is treatment literacy. Emerging issues like HIV and aging, improved treatment for HIV and TB, women and HIV, etc. We deal with frequent shortages of medications and newer and improved treatments are not available. 

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

I want to be remembered in the ACTG as a bridge between community and science. Someone with an active voice and open ears who presents community needs, and issues for scientific solutions. 

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

Less toxic treatments, with improved access and affordability. Easy and accurate diagnostics options. A reduction in other complications, especially for people who remain on ARV for a long time. Related to this, HIV and aging. Mental health, women and HIV, cure research and CVD. These are the key areas that I would like to see ACTG promote as a research priorities.

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Michael Hodge

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What is your name and where are you from?

My name is Michael E. Hodge. I’m originally from Hartford, Connecticut. I attended Wilberforce University in Ohio where I received a B.S. in education. I then moved to New York City where I attended the Culinary Institute of America, and now I own and operate my own fine dining catering company.

When did you join the ACTG? 

2013

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

I became involved with the ACTG when I was a member of the CUMC Community Advisory Board (CAB).  In addition, to becoming the chair of the CAB, I also serve as the general CAB representative and current Community Scientific Sub-Committee (CSS) member.  Learning to read and understand the various protocols is extremely rewarding, as well as intellectually stimulating.

Describe your community.

Underserved communities bear a disproportionate burden of HIV infection. New infections continue to occur at alarming rates especially, but not exclusively, among young MSM of color. The importance of testing and diagnosing infection cannot be underestimated since most new HIV cases are caused by those whose status is unknown. In my work at Columbia University Medical Center (CUMC), I have been instrumental in procuring community engagement by recruiting MSM and facilitating enrollment of transgender folks into HIV Vaccine Trials Network (HVTN) and ACTG studies.

What are the most important treatment issues to your community?

The most important treatment issues regarding HIV infection continue to be education, testing, prevention, and most certainly access to quality healthcare.

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

I would like to be remembered as someone who was persistently caring, continuously responsible, and relentlessly involved until HIV is eradicated and my services are no longer needed.

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

My future hopes for the ACTG and HIV research will be to provide treatment for long-term survivors allowing them to live healthy productive lives.

Morenike Onaiwu

Morenike Giwa Onaiwu

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What is your name and where are you from?

Morenike Giwa Onaiwu, Houston, Texas, USA

When were you involved with the ACTG?

I got involved in 2009, and am still involved today (2019)

Describe your community 

Houston is a big city but we’re still in Texas, we’re still in the Bible Belt. So we are a city that doesn’t really know ourselves. We’re modern but we’re not. We’re a small town but we’re a big city. 

We have an established group of individuals here that are pretty passionate about HIV activism. But one thing I would like to see more of is youth engagement. I think that’s something we really could work on. We have a lot of old heads, in terms of the time they’ve been in the HIV world. They’ve been around for a while. And I’m not saying the torch necessarily needs to be passed, but there’s a lot of things our younger activists have to say and a lot of wealth that they bring. It just isn’t integrated as well as I think it could be.

There are a few really up and coming people that I’m seeing that are pretty neat. A few young males of color who are involved in social justice advocacy and HIV activism. We have a burgeoning group of HIV criminalization activists, and we are very much finding our wings. It’s new because we don’t have an HIV criminalization law in our state, but we have a lot of old school country prosecutors who are using HIV as a way to enhance sentences.

Why are you involved in HIV/AIDS activism?

I got involved because I was pretty angry about the way things were. I had a rude awakening about the real world. The 80s were technically a long time ago, but they’re still among us in the way people view people living with HIV and a lot of things that people say and a lot of policies. I felt kind of hopeless and wanted to do something. For me it’s been a way to really improve lives. As a person that’s in an HIV affected family, I try to look at the whole picture. 

What are the most important treatment issues to your community?

We need to have more acceptance, we need to have better policies, we need to have better treatments, we need to eradicate stigma because stigma kills. Stigma is a lot of the reason why we have increased rates of HIV because people don’t want to get tested. There’s a lot of things involved. But ultimately we need a cure for HIV. It’s just…it’s a killer. 

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

I hope that people will remember my work as a piece of a greater whole. There’s an African proverb that states, “When spider webs unite, they can tie up a lion.” I hope that people will look at our collective work as something that made a difference.

Additionally, I hope that I helped to demonstrate that there’s a place in this work for all of us, no matter our background, no matter our differences, no matter our shortcomings. I came into this work as a 20-something year old working-class Black woman living in the South; I had a baby on one hip and another on the way – yet I have helped to make lasting changes that have had an impact on the HIV community on a global scale. I’m an imperfect person with an imperfect life, but my voice matters, and I hope I inspire others to recognize that theirs does as well.

What are your future hopes for the ACTG and HIV research?I yearn for the day that there will no longer be a need for the ACTG because we will have not only found a cure, but as a society we will have addressed many of the systemic inequalities that drive the epidemic. That’s my “big” hope. In the short-term, I want to see increased focus within the ACTG and HIV research in general on many of the factors that result in disparities and suboptimal outcomes among those in our community with multiple marginalizations – especially related to the intersections of various identities including gender, race, age, ability, and mental health. We’ve made progress in this area, but there is still a great need. I also hope that within the ACTG researchers and community continue to have a transparent, symbiotic, mutually respectful partnership, and that this model will be one that others will adopt.  

Sharon Maxwell

Sharon Maxwell (1948-2016)

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What is your name and where are you from?

Sharon Maxwell, St. Louis

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

1994

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

I was looking for other women who were living with HIV. Someone at the Washington University Clinic said, “Well we have this community advisory board and you might be able to go there.” The minute I walked in, there were four other women in there I thought “oh my gosh!” I felt I like had found what I was looking for. I had finally found someone to talk to about this whole thing. And from that point forward I started going to the CAB meetings and realizing that there is a much broader global community than just the St. Louis area. 

I was the co-chair of the Global CAB for five years, and I’ve been on the CCG, the CSS, and other science groups. 

When I first joined, I signed up to be the rep on the women’s health committee and there were three studies for women. That’s all there were. And every one of them was on genital secretions. All of them. That’s it. That’s all they studied. At that time I was approaching menopause and I thought, you know, there’s more than just genital secretions. How are the hormones going to effect the meds? So, there was another gal on the CCG at the time, and she and I advocated and by the time I left that term we had 13 studies for women and they included everything from pregnancy to hormones to everything. 

Describe your community.

The best part of my involvement has been the people. The caring, good-hearted people that you meet within the ACTG that just seem to be there to support you. They honestly became my family. I worked in graphic design so my world was advertising. That was my world before AIDS. After AIDS, the community just became one of people living with HIV and AIDS and Hepatitis and women, and everybody dealing with these kind of issues. That became my family. It made a huge difference. 

What are the most important treatment issues to your community?

Aging. We’re getting older, and we’ve been living with this for twenty, twenty-five years, and things are starting to really suck. So, let’s start looking at that. We’ve got the medicines. They work. So let’s get working on the comorbidities and aging. I’m 68, I’m at the top end of the people that are aging. We’ve got people in their fifties that are going to be coming up and going through all of this, and dealing with the lung problems, the kidney problems, the heart issues, the lipodystrophy, atrophy, diabetes, cancer. All of these things are going to happen because these people are living longer now, and have a compromised immune system.

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

I want to be remembered that I welcomed everybody in. In the early days, when someone joined a support group or the CAB, we acknowledged that they were having problems and tried to help them whatever way we could. That’s what the community needs to do now. Make everyone feel welcome, especially the international people when they come in. It’s that welcoming—you’re part of my family, you’re part of my community, let me help you type of thing.

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

I find that deep-hearted sense of the fact that you’re dying isn’t really there. Because the medicines have improved so much that people aren’t dying now like they were. There isn’t that sense of urgency that there was in the beginning. And I worry that we are losing our connection to each other. Now is a very challenging time to get people to see the sense that they are part of this whole global community and to reaffirm their commitment to this work.

Community members can learn from the people that have been community leaders in the past. Find out whatever it is that they do to do their job well, and learn how you can adapt that to your own lifestyle. Just make sure you’re part of the global network. Make sure there’s a commitment on your part. Also, maintaining the communication between community and leadership is key to what we’re going to do in the future. Making sure that leadership knows what we want and what we need; what’s working and what’s not working. 

Tim Brehm

Tim Brehm

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What is your name and where are you from?

Tim Brehm, Baltimore MD

When did you join the ACTG? 

2012

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

I got involved in research and the ACTG because of a cousin that I lost. Everything he went through has made my journey easier.

Describe your community.

Diverse!

What are the most important treatment issues to your community?

Knowledge about treatment, adherence to treatment, knowledge of PrEP

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

That I was consistent and shared my experience with HIV and my experiences with research as a participant.

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

To be here in this capacity when I have 20 years in, for treatment at that time to be even better, and for the stigma to end.

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