long term survivor

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!

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.