underrepresented populations

JaniceAJ

Janice Adams-Jarrells

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What is your name and where are you from?

Janice Adams-Jarrells, from Rutgers/Newark, New Jersey

When did you join the ACTG? 

I joined the research CAB sometime in 2006. After attending many meetings, I was appointed to be the GCAB representative. 

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

When I was diagnosed, there were people dying everywhere from the virus. After being prescribed AZT, I started questioning why men and women were taking the same dose when our bodies are so different. The answer I received was, “You need to get involved in research!” So, here I am.

I have been a trial participant and a member of protocol teams. I’ve been on several committees, including the CSS. I received the Bridget Murtagh Award three times, and the Sharon Maxwell Award. But really, just doing the work is enough of a reward.

Describe your community.

My community is an urban setting (the largest in New Jersey!) with many diverse people. My community is underserved and underrepresented. It includes LGBTQ people, women of color, older people, long term survivors, and transgender folks. 

What are the most important treatment issues to your community?

Housing. In order to stay adherent, you need to have stable housing. It’s so important to have a place to live that is safe and comfortable, and that is free of stigma, shame, and judgment.

HIV criminalization is also a huge issue in my community – we need to change outdated and harmful laws. I’m in a discordant marriage, which is actually the main reason for the caption on my portrait (“Decriminalize us”).

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

I’m a community activist who wears many hats. That means I multi-task! I educate people (HIV 101, clinical quality management) and am involved with the Coalition to End Discrimination and Stigma. I advocate for women’s issues in the ACTG and beyond. I’m the founder of the IDPCAB and a leader at the nonprofit Hyacinth. All of this advocacy is done as a volunteer—with no salary! I just love what I do.

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

I hope HIV researchers find a cure and ways to eradicate HIV reservoirs. I hope the ACTG continues work on co-morbidities, even after we find a cure. Once we cure HIV, the other comorbidities will all still be there. 

RoyceH

Royce

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What is your name and where are you from?

I’m Royce, from North Carolina.

When did you join the ACTG? 

I got involved on the local CAB level in 1991 or 1992. The clinic PI was my doctor and his wife was the social worker–John and Trish Bartlett. Trish encouraged me to join the local CAB. I came to my first ACTG meeting in 1998 or 1999.

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

I started going to the clinic in 1990. Back then I was healthy and relatively young. The clinic waiting room was just crowded with people. Back then people were dying left and right. And I just felt like, I’m healthy, I’m doing well, I ought to be able to help these people. I was on the Phase 3 trial for 3TC and I just felt like I should be able to help.

Our local CAB was very active. We would have a Christmas party for the clinic clients and their kids. We’d go around the community and collect toys and gifts and donations. It got to the point where we had over 800 people at the last few Christmas parties. 

We also did a community report every year. Twice a year we would have a big report for the entire clinic population and then we’d have a smaller, more scientific report. And that got to where we had 800 people as well.

After I had been involved on the local CAB level, and our community outreach person really encouraged me to apply for what was then called the CCG [now the CSS]. I really like meeting people from different places and different experiences, and so that’s why I applied. I did two terms on the CSS and I can’t even remember everything I’ve done as a member. 

Describe your community.

I’m originally from the Duke site, and everybody thinks of Duke as an elite institution, but over 60-70% of the clients at the clinic are on Medicare/Medicaid. Durham is 40% African American and the rates of HIV infection were just astronomical then – still are. Especially in the young population.

In the ACTG community, things have changed so much. I mean, I went on disability in 2005 and this was what I did. For many ACTG community members, that’s just not the case anymore.

What are the most important treatment issues to your community?

Aging. Aging and all of the complications that come from long-term inflammation.  There’s still so much to be done. What’s inflammation still doing to your body? What non-AIDS-defining illnesses and cancers are down the road for you?

For the ACTG community, I worry about maintaining our legacy. We need newer and younger members to realize the importance of this work. And I just feel it’s sort of slipping away. There is this history of community involvement in the ACTG and it feels like it’s just slipping away. It has been a gradual and generational thing, and it’s like, how do you steer a 400 foot freighter, you know? That’s loaded down. And that’s what it feels like to me.

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

I think the thing I’m most proud of is some of the young people I helped get on the CSS. I’m most proud of that. I really am. Not the stuff I’ve done personally, but people that I feel like I’ve had some part in getting involved.

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

My hope is that there’ll be a resurgence among community. We need to figure out a way to reinvigorate the enthusiasm here among advocates in the US. I don’t think we have to worry about non-US members at this point—they’re really driving things. And rightly so! I’d like to see the ACTG community develop some mentoring programs to develop the skills and enthusiasm that new members have and build up their leadership abilities.

Melissa TX

Melissa

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What is your name and where are you from?

Melissa from Texas

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?

As a trans woman, I wanted to be involved in the big picture of HIV and AIDS research. I have been involved in panel discussions, and have spoken about why trans participation is important. I have also shared ways that studies can be improved for trans participants.

Describe your community.

My community is colorful and diverse!! My community is alive and dancing the complicated steps to life!! Join in this worldwide dance of life!

What are the most important treatment issues to your community?

Trans women (specifically trans women of color) bear the brunt of intersecting social inequities that affect participation, treatment, and the integration of treatment and prevention. 

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

I see my work in the ACTG as one small piece in a larger puzzle. I hope my work helps to complete the larger picture of what we do together. 

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

My hope is to come together to celebrate an end to HIV/AIDS in my lifetime.

Ruben Vidales

Ruben Vidales

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What is your name and where are you from?

Ruben Vidales, from Los Angeles, CA

When did you join the ACTG? 

I have been involved with ACTG studies for a very long time – like over 20 years! 

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

I love research and have seen the benefits hundreds of  times, including for myself. I want to be able to assist others through my advocacy. I never want my kids, or anyone in their generation, to go through what we have gone through and continue to go through. 

I’ve been an ACTG CAB member for over 12 years, and was on the Community Scientific Subcommittee for 7 years. I’m about to begin another term on the ACTG CSS

Describe your community.

Most importantly, my community is the entire world dealing with HIV, tuberculosis, and hepatitis. My local community is underrepresented and marginalized. Sometimes it is hard to reach out to the populations that make up my community, but it’s important not to give up. My community – regardless of HIV status – is hopeful for a cure. But we are also frustrated by a lack of services, especially for mental health issues. Overall my community stays positive and hopeful. 

What are the most important treatment issues to your community?

Taking care of all the issues related to aging: medically, physically and mentally. Also finding a cure for HIV. 

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

That I made an impact. That I spent ACTG resources effectively and disseminated vital information and knowledge to as many communities as possible. 

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

I hope that the ACTG leadership continues doing a fantastic job in the field of HIV research – cure, pill burdens, side effects, new medications, identifying reservoirs, long acting treatments, aging, and most of all, continuing to involve community members at the table throughout protocol development. 

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. 

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. 

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.

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. 

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.

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