CCG

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.

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. 

Allegra

Allegra Cermak

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What is your name and where are you from?

Allegra Cermak, St. Louis, Missouri, USA

When did you join the ACTG? 

I joined the Washington University CAB in 1992 

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

It was a personal kind of thing rather than an academic thing. I mean, I was there because of friends. Not because I didn’t care in the abstract, but I was in ACT UP because of a very specific friend. So I got to a meeting because of a very specific friend. And those people became my friends. And after awhile, almost all my friends were involved in AIDS. I don’t think you’re seeing that so much with the younger generation. 

Describe your community.

I think a lot of staff feel close to several of the community members. I don’t think there is this big gulf in between. The experience I have now, is that there are things that come up that I will be in a meeting, or a staff meeting, or a meeting with leadership, and I’ll be speaking for the community point of view…I was actually on a conference call recently, and I went into something, and I said, “I’m sorry, I know I always sound like all I care about is what the CABs get,” and Ian Sanne said, “No, that’s your job. Your job is to speak for them.” And I was really touched that he thought of me that way. 

What are the most important treatment issues to your community?

I’d like to see the community be interested in the breadth of potential research. There was some resistance in the community when we had TB added to our portfolio, and I thought that was too bad. Because a lot of things in the portfolio are only there because of community. Hepatitis, there was resistance. The bone disease, the community had asked for research into bone disease and was told no, that wasn’t an HIV issue. And then all of a sudden somebody else comes along and says it is and now we’re looking at bone disease. And I just hope that the community makes an effort to look at things they think are affecting them and pushes for there to be research into those issues, even if it’s not the ACTG. I mean, there might be a more appropriate place to do the research, and more appropriate institutes, but I’d kind of like to see them be knowledgeable enough and comfortable enough to propose ideas for research. Because a lot of the things that we’ve done over the years have really come from community pushing it. 

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

I want to reiterate that the ACTG system of community input was the very first time that community was part of the research process. And THAT is a really big deal. Most areas of research still have very little community input. Now, partly it’s possible with HIV because it’s a long-term commitment and it’s a long term illness, it’s not something where I’m cured and I’m gone. But any other institute, any other area of research, that is now involving community, that all started with the ACTG community. I mean to me that is, in a way, that is one of the biggest contributions that we’ve made. Not only because HIV research impacted all other kinds of research because of it being a disease where it’s other things that hurt you–it’s metabolic disease or kidney disease and you’re affected because of your HIV situation. So we’ve had this huge effect on areas of research that you don’t think of as being HIV, but also we’ve affected the way that research can be conducted involving community. 

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

We’re only now starting to get some younger people. And they seem really committed, which is important. They don’t always have that sense of history, because they weren’t there. So that is kind of a problem. And the people who have been around a long time, they used to go out a lot, and they used to organize more activities as a group. They’ve gotten older and they don’t necessarily party until 3 AM, which is maybe not a bad thing, but at the same time, I guess can be a little bit of a generational thing