It started during the 2020 International AIDS Conference. Normally a massive in-person gathering of tens of thousands, the weeklong meeting instead became virtual due to the COVID-19 pandemic.
“We realized our experience with HIV and AIDS is kind of unique,” said HIV/AIDS advocate and long-term survivor Vincent Crisostomo. In online presentation after online presentation, Crisostomo and fellow advocate Hank Trout also began to realize something else: a lack of perspectives from long-term HIV/AIDS survivors.
After the conference, following in the footsteps of the Denver Principles of 1983, Crisostomo—a program manager for the Elizabeth Taylor 50-Plus Network—and Trout—a senior editor for A&U magazine—along with Paul A. Aguilar, Harry Breaux, and Michael Rouppet, got to work drafting a response.
The result: the San Francisco Principles, a newly released statement demanding inclusivity and better, more equitable care and services for long-term HIV survivors in the U.S.
Today, more than half of people living with HIV in the United States are over age 50, and by 2030, that percentage is expected to increase to 70%. Yet the statement authors contend that these aging communities, having endured collective trauma and loss during the 1980s and 1990s, now face erasure and inequities in policy-making, research, and health care. The response to HIV “can’t always just be the latest trend,” said Crisostomo.
Terri Wilder recently spoke with Crisostomo and Trout about the San Francisco Principles, its demands, and the specific needs of the first generation of people to age with HIV.
This transcript has been edited for clarity and length.
The Origins of the San Francisco Principles
Terri Wilder: First of all, I read the principles, and it is such a powerful statement. The emotion behind the words just really impacted me. How did this statement come about?
Hank Trout: For me, what sparked it was something that wasn’t there [at the International AIDS Conference]: long-term survivors. There were well over 100 hours of different presentations going on at various times. Out of those 100 hours, there were only two one-hour sessions devoted to long-term survivors. That really rattled me.
More than half the people in this country who live with HIV are over the age of 50. Ignoring our needs was just a slap in the face for me.
Vincent Crisostomo: Yes, it’s more about what didn’t happen. Myself and about four or five other folks—we hosted the Long-Term Survivor Networking Zone in the Global Village. It was so challenging to get people together. We ended up posting our own Zoom events outside of the conference to make them accessible to people.
Before that, we had talked about having some kind of protest or demonstration to bring awareness. It became clear that in this new age, all you have to do is hit the mute button and—the access—it’s like you’re silenced.
There was one experience that was really telling. I was in the Global Village and looking for my co-host. We were all there, but we couldn’t see each other, because of whatever challenges were happening with the technology. I said, “This is so telling. If we don’t stand up and say something, this is just going to get worse as we get older.”
What It Means to Be a Long-Term HIV/AIDS Survivor
Wilder: What is a long-term survivor? And, in the principles, what does the reference, “We are the AIDS generation,” mean?
Crisostomo: “Long-term survivor” means different things in different communities. But for most of us, we accept that if you acquired HIV before 1996, when treatment became available, you are a long-term survivor. For other communities, it means different things.
There are people who were born with the disease, who are now in their 30s and 40s and have been living with it for quite a number of years. Their experiences are different. So, it depends on what community you’re in.
Hank, why don’t you tackle the AIDS generation?
Trout: We decided, for our purposes, that we would define long-term survivors as anybody who contracted HIV before 1996. And we called it “the AIDS generation” because, for so many years, that’s pretty much all we’ve lived with—the chaos and death brought on by the pandemic.
We wanted to call it the AIDS generation because it affects all of us in that generation, not just those of us who are positive, but also the folks who are negative. What singles us out from others who might be considered long-term survivors is we were here from the beginning. We are the ones who buried our friends and lovers. We’re the ones who were condemned by religious leaders, ignored by public health officials, and pretty much just shoved aside. There’s a whole generation of us that were decimated by this disease. Not to sound conceited, but I think that gives us a unique perspective on this pandemic.
Everything that we’ve learned about HIV and AIDS has been learned on the backs of us long-term survivors. We were the ones who signed up for all those medical trials. We’re the ones who took all those horrible medications, hoping for the best. Our experience with this pandemic is far different from those people who have contracted it since treatments became available.
Crisostomo: Right. And what became obvious to us is that we’re dying, having three times the comorbidities that people who aren’t HIV positive experience, and experiencing them early. Many of the people that were with us when we started this—I guess it was a movement—in 2013 are not with us now.
Every year, there are less and less of us. Those of us who were the active generation, who participated in that, and the protests in the streets, our experience has not been captured. I’m of the opinion that it’s always important to tell your history—otherwise, someone will tell it for you.
Trout: That’s been the main reason I write these days. If we don’t tell our history, somebody else will. And either purposely or not, they will get it wrong. So, it’s up to us to tell these stories.
“We’re Not Gone Yet”
Wilder: Why do you think that long-term survivors’ needs and issues are being ignored or erased or not acknowledged? Is this about ageism?
Crisostomo: The response to HIV and AIDS has been very reactive. It is not uncommon for older people to feel isolated—but in our case, there’s a lot of grief. The stories are so painful. This is my opinion, but once the effective treatment came out, people stopped dying, and people just didn’t want to talk about it anymore. I think a lot of us stuffed that down until there came a place where we could talk about it. And that place has not really ever started to happen.
It’s starting to happen in San Francisco, but it’s a part of our history that people just want to kind of forget about. And as a result of that, for those of us in the AIDS generation—and I’m more at the tail end of the AIDS generation—people are just not interested. It was just such a painful story.
Trout: For me, it started with the medical community. Once the cocktail was available and, like Vince said, once people stopped dying every day, then that community pretty much abandoned us. Their attitudes came to be, “Hey. We gave you these medicines. We saved your lives. Now go sit in the corner and take your medicine like a good little guinea pig.”
It’s only been in the last few years that anybody has paid any attention whatsoever to the physical and psychological needs of those of us who have lived with this pandemic all our lives.
Crisostomo: Right. And even then, it’s only recently—maybe within the last couple years—that we’re starting to see ourselves in some strategic plans where some policy makers are turning to talking about our needs. There’s a debate currently going on amongst some of the aging providers: HIV is just another thing older people experience. But it’s not the same. As Hank said earlier, the experience is different.
I was program manager for the Elizabeth Taylor 50-Plus Network for about six years. One of the most common things I said in the beginning when we started coming together was that if we don’t care, no one else is going to. Trying to bring people, keep them motivated to keep stepping out into the light and saying, “We’re still here. We’re not gone yet,” has been a really powerful experience. But it’s also been, to a large degree, very disappointing. This is my experience, but I feel that, even in San Francisco, where our response to the HIV/AIDS epidemic has been highlighted and is always lifted up, they’ve been very slow to respond to the AIDS generation and the needs of that generation.
Central Demands of the San Francisco Principles
Wilder: There’s a list of demands in the principles. Can you summarize the demands?
Trout: One is that we be included in the planning and presenting of all national and international AIDS conferences. We will not be ignored any longer.
One of the big problems is geriatrics. There aren’t enough geriatric doctors in the country to begin with, and only a handful have had any training in dealing with patients who have HIV, especially patients who have had HIV for decades. We’re demanding research into our physical condition and help with the mental issues of isolation, loneliness, and grief. Like Vince said, there’s a lot of grief in this community, and it’s hard to deal with.
Crisostomo: The response needs to be tailored to the different communities that HIV/AIDS impacts. It’s often cited in San Francisco that this is the generation that didn’t plan to live. They didn’t save up. They lost their jobs. There’s just a lot of stuff. I also feel that the service providers and the policy makers didn’t plan for this, either. When we started living longer than expected, there were not the mechanisms in place. It’s been a lot of kicking and screaming and shouting and, finally, we’re starting to see some response.
I hadn’t heard about the Atlanta Principles, and I looked it up, and it’s all about prevention. We’re not mentioned once. HIV, at least in my experience, has always been about a continuum of care. If we’re only going to focus on preventing the infection, you’re not going to get those who get it and need attention. That’s what we’re trying to bring awareness to. You need to change the response. It can’t always just be the latest trend.
Trout: In terms of the funding for prevention, all of us absolutely 100% support efforts to prevent seroconversions. We all support that. But there has to be some parity with the way funds are spent. Like Vince said, if you concentrate only on prevention, then you’re ignoring the thousands and thousands of people who have lived with this for some time.
Wilder: In what ways do you think money should be reallocated, and for what purpose?
Crisostomo: Right now, about 55% of people living with HIV in our country are over the age of 50. In San Francisco, it’s close to 70%. And we haven’t seen the kind of funding that goes to other responses go to people who are older.
With the fact that people are living longer, you need to start planning on how these services need to look, and hopefully learn from the past. The whole COVID response has been such an example of some things we didn’t quite get right, and those need to be focused on.
I think our generation was always willing to be part of the solution. But we’ve found, as we’ve gotten older, that there were less and less places where we could actively participate. We’re trying to balance out the equality and have some equity.
What’s the Best Way to Reduce Isolation Among Older People Living With HIV?
Wilder: I want to talk about something that has come up quite a bit in our conversation. The statement refers to the isolation and loneliness of being a long-term survivor. When I first started out volunteering in HIV in 1989, one of the very first things I did was I signed up to be a buddy to a person with HIV, to offer support and friendship. Do you think there’s a need to bring back programs like the buddy program?
Crisostomo: I started in New York in 1985 as a buddy. I remember one of my first clients—I was awful. I bounced into his room, this 20-year-old, full of energy, smiling, trying to be positive and whatever. One day, he just told me, “You know what? You’re getting on my nerves.” It was my first experience to learn that this wasn’t just about me, and that I needed to take into consideration the fact that there was this person in front of me who also had needs and feelings, and to take a step back.
I ran a buddy program for API [Asian and Pacific Islander] folks in the mid-90s, and it was one of the most positive things in my work. Some of the volunteers that I met are still considered family to the partners who survived. Or if their client survived, they’re still in their life. It’s been something that’s definitely demanded and that people have asked that we bring back.
GMHC in New York has a buddy program, which is kind of the cornerstone of their HIV and aging programming. The thing is that they can’t only need us who are over 50—we need some younger folks involved in that. There are certain things, as an older person, like climbing up a ladder to change a lightbulb, that, if your balance is not the greatest or you’ve had some falls already, maybe you shouldn’t do. This is where I think giving everybody a chance to participate could be very enriching.
I’m all for that. That’s one of the first things I want to try to put back together in the next year or so, in San Francisco.
Trout: Shanti, another ASO [AIDS services organization] here, did have a buddy program that they operated for some time. It’s not a new idea here, but it’s something that we probably should look into going back to.
Crisostomo: Most people who did that found it to be very enriching. It’s also led to some incredible careers. I think the opportunity to give back is a really incredible opportunity, especially when you know you’re appreciated and there’s deep gratitude for what you’re doing. So I’m all for it as a model. It’s not just the needs of people who are aging with HIV. It’s not just medical. Having that person that you can talk to and sound off with when you need to is just incredibly helpful.
Acknowledging Early HIV Caregivers and Activists
Wilder: In the principles, it states, “We embrace in our definition of “long-term survivors” our HIV-negative sisters and brothers who faced the same fears, suffered the same losses, and endured the same grief as we HIV-positive survivors. And to this day, they continue to suffer the same PTSD, especially those caregivers and activists who rushed to the front lines of the fight against AIDS.” Why was it important to include HIV-negative survivors?
Trout: Many of the people that are in the Elizabeth Taylor 50-Plus group are HIV negative, but they are, like us, in their 60s and 70s. And they lived through those same times. This is one example: We have one member named Bill who is negative and has remained negative. But during those years at the worst of the pandemic, he buried three of his partners.
It’s not just those of us who have the virus, but the people who lived through those times with us. Especially the straight women, lesbians, and straight guys who pretty much rushed to the front of the battle lines and fought for us. Excluding them just doesn’t seem fair. Except for the physical comorbidities, they’ve got the same trauma and same mental difficulties that the rest of us have. Grief is grief, no matter whether you’re HIV positive or negative.
Crisostomo: Right. As I’ve gone around the world, working in HIV, I realize that we didn’t do this alone. In the Asian and Pacific Island community, which I hail from, there were many more HIV-negative people participating and fighting in the response than there were HIV-positive people. For me, it was important to acknowledge those roles.
In the past, our HIV status has always been something that sort of divided us and separated us. When we’re talking about it now, as we’re getting older, rebuilding the community and healing that piece means we include everyone. We don’t deny people their experience. And particularly the women caretakers, our lesbian sisters who took care of us—we want to acknowledge their goals and make space for them. That’s one of the things that I’ve learned. It’s like being HIV positive was one thing, but that doesn’t mean that my HIV-negative brothers and sisters didn’t hurt any less than I did.
The Way Forward: Starting Conversations and Aligning With Other Movements
Wilder: Near the end of the principles, there is a statement about aligning the fight for long-term survivors with other social and health care justice movements, including Black Lives Matter, the LGBTQ movement, and others. Do you think there’s a role in aligning with the disability justice movement? I’m assuming that long-term survivors have experienced their fair share of ableism.
Crisostomo: Yes. That is one of the biggest things about the difference in my program and 50-Plus and some of the other programs. We have to figure out, how do you make something accessible to someone who has mobility issues? Having events in places that don’t have an elevator and that aren’t ADA accessible can be a real challenge. Even just being aware of how someone gets from one point A to point B has been a challenge.
I’ve tried to align a lot of my work with the disability justice movement. That was the work that I did with the HIV & Aging Work Group when I was part of the San Francisco mayor’s Long-Term Care Coordinating [Council]—that’s LTCCC—because I realized that this is something we needed to bring into our response. As we get older—and seeing people who’ve experienced a number of comorbidities, how fragile and frail they are—we need to rethink our strategies.
Trout: Just as an example, three years ago, I fell in the apartment and fractured my pelvis and did all kinds of damage to my spine. I’ve been using a wheelchair whenever I leave the apartment now. Vince is right. It’s really frustrating to go someplace and not be able to get in. A lot of people just don’t seem to plan for people who aren’t easily mobile.
Wilder: This is, again, such a powerful statement. At the end of the day, what are you hoping the release of the principles will achieve?
Crisostomo: I’m hoping it brings people together. We’ve started to experience that. We have maybe close to 300 people who have signed onto it. And maybe you don’t see yourself. The document has its dance. But what needs to be there: We’d like to do a Transgender Principles because we feel that that’s a population that’s often been marginalized.
So, it’s a conversation piece. It is a document that says, “Hey, we did great for the first 30-something years. But now there are still some things that we could do better.” We’ve had people in Australia, people in England, people around the world, saying, “You know what we think about this. …” I’m hoping that it’s a community mobilization. It’s a conversation starter. It’s a call to bring people together. We’re not done yet.
Trout: We’re just getting started. I got an email from one of the ASOs in Australia asking if they could use the San Francisco Principles as a model for drawing up their own set of principles for people with HIV in Australia. Our response was, “Yes, of course.” That’s what we’re hoping for—that it will start that kind of conversation and get people to address these issues.
Wilder: If people want to get involved, where would they get information about the San Francisco Principles? Is there a website? Is there a Facebook group?
Trout: Both. The website is thesfprinciples.org. We’ve also gotten a good bit of press coverage. The magazine I wrote for published the principles, and at the bottom there’s a link that you can sign on in support of it. That’s on our website, also, and on the Facebook page.
Crisostomo: We’re hoping that people will read the document and be inspired, so you don’t just fade into the background. One of the things that I’ve felt has been part of my job in HIV and aging is to push hope. I learned this during COVID: We need to make choices that are optimistic, because optimism brings hope. When COVID passes, where do you want to be? What kind of life do you want to live? What are you doing now, during this period, that gets you there?
In 50-Plus, we’ve started to ask people those questions. Whether you want to go back to dating, or you want to go back to maybe your art career that you kind of put off to the side. You know, just because we’re older doesn’t mean we can’t lead full and meaningful lives.
Trout: For me, the most important thing is making people realize that we are still here, and we are still living with things that most people have forgotten about. We need that attention—and not just from our friends, but from the International AIDS Society, from the CDC, and from all these different groups. We need them to acknowledge that we exist, and that we have problems that haven’t been dealt with yet.