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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HIV criminalization is also a huge issue in my community – we need to change outdated and harmful laws.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. 

Julius Anjiri

Julius Anjiri

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What is your name and where are you from?

Julius Erics Anjiri. I was born in Kisimu City, in Kenya

When did you join the ACTG? 

I joined the ACTG in 2015

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

I am a community mobilizer, and have been involved in demystifying clinical research. I am a community representative in the Kenya CRS, which has been my involvement with ACTG activities. 

Describe your community.

My community is rural – we have many people who are involved in peasant farming

What are the most important treatment issues to your community?

Poor sanitation, HIV, AIDS, malaria. 

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

I hope to improve my community’s level of understanding of HIV/AIDS research and the importance of drug adherence. 

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

A future that is disease-free!

FlaviahN

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 

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

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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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. 

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