2000s

JaniceAJ

Janice Adams-Jarrells

, , , , , , , ,

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HIV criminalization is also a huge issue in my community – we need to change outdated and harmful laws.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

Ruben Vidales

Ruben Vidales

, , , , ,

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. 

George K

George Kukhala

, , , , ,

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 

Julio Barros

Julio Barros

, , ,

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!

Frank_M

Frank Martinez

, , , ,

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!

Estere_Mutero

Estere Mutero

, ,

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

, , ,

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.

CAB quilt

Pitt CRS

, , , , , ,

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

, , ,

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.

IMG_9853

Liz Barr

, , , , ,

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. 

Load More