Monday, June 5

‘At Home With’: Michael Rouppet on the San Francisco Principles, Advocating for Yourself, and Bringing Others Into the Fight

The dashing California native Michael Rouppet has been a longtime advocate for HIV and AIDS issues since early on in the pandemic. His passion and heart for people living with HIV, especially long-term survivors like himself, is evident in his work formerly with the San Francisco AIDS Foundation and currently as an advocate for housing for people living with HIV.

He was a catalyst for getting together the group of HIV advocates who designed the San Francisco Principles, highlighting the needs of the aging population of people living with HIV and the needs of long-term survivors. Michael was an enthusiastic guest on a recent At Home With Instagram broadcast for TheBody.

This transcript has been edited for content and clarity.

Michael Rouppet: Right now, I’m sitting at home in my dining room, and it’s a beautiful day in San Francisco. I’m loving this.

Charles Sanchez: Well, lucky you. It is freezing cold in New York City, but you know, we’re in New York City, so we have that.

I don’t know very much about your HIV journey. Would you just give me a little background on Michael Rouppet and HIV?

MR: I would love to. My work with HIV goes back decades. I remember going and marching with ACT UP in the March on Washington in 1993. We held a red ribbon around the U.S. Capitol, and I left some really strong sentiments to then–U.S. Sen. Jesse Helms. If we remember that d-bag. Remember when they put a condom over his house? Cheers to you, ACT UP!

So my HIV journey began back in the era when it wasn’t safe to—people had to worry about disclosing their status. And I was super young, super in love. And the time I let my guard down—I was so militaristic about safer sex, using condoms, and swept up in the moment of human frailty and weakness. And I’m still very close friends—both of us survived—my partner then and myself today. It’s been a lot of good discussion about how to make HIV negotiation and sex a safer place for people who are positive. If you remember back then, there was so much [stigma], and we invest so much today in addressing stigma. Stigma is a big issue because it prevents perfectly fine conversations about testing from happening. We saw this trend of criminalization that came from stigma and a lot of unfounded beliefs about HIV, how the virus was transmitted. And so there’s so many marvelous efforts out there, but I do see, and I do fear that we are sliding back a little bit.

I think that the impact of coronavirus has been felt in terms of [the] HIV community. But I’m here today to basically continue bringing HIV to the forefront as an issue. We are having a demonstration next month in March because HIV care is falling and slipping in San Francisco. And if it’s slipping here, it can happen anywhere else. Our outcomes are starting to really drop, and we could do better in terms of testing, making sure that people who are on their medications stay compliant and have continued access without obstruction to their health care providers. For example, we had a discussion with Dr. Monica Gandhi recently, and we’ll be working with her to organize the action next month through our HIV caucus in the Harvey Milk LGBTQ Democratic Club. We want the city to commit to stronger outcomes in supporting people with HIV. My journey from all the way back then brings me forward to today. Because as we’re aging, time is more essential. [We are becoming an aging] population, with over 50% of people in the United States who are HIV positive now over the age of 50, and yet we’re still one of the greatest underrepresented populations.

CS: We’re in this really strange moment. I was talking about [McMinn County in] Tennessee and [how they’re] banning the Pulitzer Prize–winning graphic novel Maus, which is so ridiculous. But it’s also at the same moment when Florida is talking about not allowing people to talk about anything gay in schools or mention anything like that, which is, talk about a backslide! And how that will affect HIV and how people perceive HIV and stigma and everything else. It just is part of that domino falling. Do you think that is a trend that’s happening across the country, or is it just a Florida weirdness, [or] something left over from Trump?

MR: I think with Florida’s track record, they ought to drop the arrogance part. They don’t have a very good track record. In fact, if you remember, Florida was held up as an example when the World Health Organization was looking at HIV criminalization. What they found in Florida, in particular, [was] that there was a reluctance for people to get tested and into early treatment. If we suppress the virus earlier, we can prolong life in people. As we all know, over time, the virus, we want to keep it suppressed as much as possible. But for many of us long-term survivors, I’ve burned out entire classes of meds. Some of us are a little bit on the pipeline edge. You have to look at access to treatment. Florida had criminalized it, and they had lower testing rates, which meant that they had a lot of untreated [people living with] HIV. Historically, with LGBTQ issues, they have not shown any leadership on these issues. Today [with] coronavirus, they’re still not showing leadership. It’s really disappointing. I know some great people in Florida who I love and adore, but this doesn’t represent them or their values.

CS: No. It scares me though because those kind of people seem to be getting so much press and so much attention, and are leading people in a bad way when it comes to coronavirus, when it comes to HIV, when it comes to human life and values. And it’s frightening to me. I have friends who are like, “Oh, we just bought a house in Fort Lauderdale,” and I go, “What, are you crazy? Why are you giving them your money? Why are you doing that?” “Oh, well, the beach, and you know.” I’m just like, no, no, no. I’ll stay in my cold winter in New York where people at least think halfway normally, for me.

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MR: I love New York!

CS: I’m not real thrilled with our leadership right now, but at least they’re Democrats. At least they’re really trying to be on the right side of things when it comes to COVID, HIV, and all these kinds of issues, homelessness, etc.

MR: That’s interesting you raised that point. I mean, we also have predominant Democratic leadership here, and I make no bare bones, I’m like as commie pinko faggot as you can get! That’s me!

CS: Me too! Me too, baby.

MR: And I don’t—no apologies, no regrets. I will say this: Even our leadership here, I mean, I may not agree politically on some issues with people in San Francisco, but I do intend to push them to do the right thing. Going back to our roots in activism, we have to tell people when to do the right thing. Right now my community, the folks with HIV, matter to me. They’re in my heart, in my history. This is one of the reasons we drafted the San Francisco Principles.

What we saw was happening is the failures of policy work. Even if HIV were cured tomorrow, the policy work needed to fill the gaps from generations of neglect will last over the course of my lifetime and the generation to follow. And I think possibly longer with stigma. The principles is [a] very modest document. We basically drafted it and modeled it after the Denver Principles, back in 1983, when a group of activists sat around and drafted this brilliant document. We wanted to give it relevance today.

We invited people to the table after the AIDS 2020 conference. We were all delegates, and we invited a wide net of people to show up, but we also wanted to get something done as an aging population. So we worked with everybody who showed up, and I am so proud of the drafters of the principles. For me, it’s a very sensible but modest document. It’s like a sensible house frock that you could never go wrong in. That we didn’t even have it, it was astounding. And part of it, one of the mantras we used back from 1983 and brought up, is, “Nothing about us without us.” This means we need to be involved in the decision-making. We need to be at the discussion table. There needs to be a place for us to look at the planning and outcomes for HIV programming throughout the United States.

We have signers on three continents now, and we’re translating it into multiple languages so people can have access to this. We just came up with a template that was applicable in San Francisco, but more and more people read [it] and [said], “Hey, I could relate to that.” And even in countries with universal health care, which leads me to my next two initiatives.

CS: I have a question. The people who drafted the San Francisco Principles, were they people from across the country, or was it just San Francisco–based?

MR: Great question. We actually started with—we went through networks. So basically, it started like this: After the last one [the global AIDS conference in 2020], Hank Trout [long-term survivor, writer, and activist], I texted him.

I’m like, “So how’d this go for you?” He texted me back, “I’m pissed off. And I could spit nails.” And I was like, “Would you like to do a Zoom call?” So we put it out through our networks. I don’t think the network was exclusively San Francisco, but there was a huge San Francisco delegation that had attended. You know, it was supposed to be happening here, and because of COVID, it went all virtual and it was so disappointing. There [were] some glitches and stuff, but looking at the programming itself, there wasn’t a lot of mention about people with HIV. There wasn’t a lot of consideration that older people would be using these systems. Bless the folks who gave us the ability to be there and covered our scholarships. And I’m so grateful for that. That was brilliant.

And there was some fantastic discussion, but there was a huge miss of a huge opportunity to include us, even in our national plan for HIV and AIDS in the United States. I think it was like this last year, like 80 some-odd pages. We get a mention, I think, in a whole one page, and we could do better. I know that this is better than under the previous administration when there was nothing happening, but again, I’ll reiterate, we’re not getting any younger, and we need to see commitments and we need to see outcomes improve within the course of our lifetimes. I mean, we’re now going through a second pandemic, and I think our survivors and our folks deserve better, and it’s reasonable for us to expect more.

CS: There’s certainly a focus, I think, globally when it comes to HIV, on prevention, and they don’t include those of us who are living with HIV as part of that conversation. Or even if we are healthy, as people living with HIV, if we are healthy and thriving and doing well, then that is a prevention tactic. If you want to put it that way, that is a prevention tactic. If we are living healthfully, if we are doing all the things that we are supposed to do, like take our meds and see our doctors regularly and all that kind of stuff, if you wanna keep it in that prevention mode, that’s a prevention tactic. But I also think that they forget about us as being human beings who have full rich lives and that have every right to have those full rich lives, love and sex and families and everything that goes with that. They forget, they just think of us as being numbers sometimes.

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MR: I’m so glad to hear you say that. And thank you, because it validates—much of the work I’ve seen published in TheBody, thank you for, over the years, reminding us it’s OK for us to be human, it’s OK for us to love. It’s OK for us to love each other. I do remember a time in the earlier years with HIV and AIDS, we never crossed each other. That was sacred. That was a sacred space because we were holding our loved ones as we were losing our loved ones. I mean, probably I’ll watch my mouth here, but it was devastating to go through that. I’ve held so many people I loved as they passed, and this is my passion.

I’m taking on two initiatives this year. Last year when we released the principles, for a few hours, we had this moment of elevation that maybe we could have made a dent in the world of HIV, to improve the rights for people with HIV, for other places to follow. And on that same afternoon, [U.S. Supreme Court Justice] Ruth Bader Ginsburg passed away. Our focus changed really rapidly to that, but this year I’m coming back to the two things I would like to include. When we sent this out to the world, we asked communities, “Hey, this is a modest document. Take it to your communities and make it relevant to how it is applicable.” I want to lead by example this year and show that areas that I think this could apply is in housing and health care. I’m a huge proponent of Medicare for All. And I don’t apologize for it.

I think as the only industrialized nation without a universal health care system, it is shameful. I believe our politicians on both sides have been lying when they tell us that we can’t do it here because we value profit over people. And it is evidenced in every single industrialized nation other than us, but they just tell us they can’t do it. And the second part is we’re also in an affordable housing crisis. While the principles took on the geriatric crisis—I can come back to that and circle back to that in a second—in California, particularly in San Francisco, we are dealing with an affordable housing crisis. And again, there’s a lot of egos in the way, and this is really about outcomes. It’s more important that we commit and we have outcomes. We elect the right people who are committed to those outcomes.

Also, I think money has to be pulled out of politics. That’s my personal philosophy. You may or may not agree, and that is OK. But that’s the work I’m doing because I don’t like to ruin perfectly fine conversations. When Upton Sinclair ran for governor of our state, he basically said, you cannot convince a man who’s paid to believe otherwise. But I think this is true for anyone: man, woman, or any person running for public office. It’s hard to convince someone when they’re getting paid, or bought and paid for, to have a different viewpoint. I think that there’s a lot of reforms that I’m looking to initiate, but through the housing and health care discussion that I had with my friend, I’m just gonna plug her right now, Jackie Fielder. She has a podcast called Daybreak, and we had a discussion—we go back through AIDS, the early years of the crisis and the pandemic, discovering AIDS, what that looked like. But I also think that we have to look at how the media is reporting about AIDS. And recently, I’ve been noticing that there’s a tendency to treat some things [in a way] that took me back to the ’80s in terms of shame and stigma. I think we’re gonna have to be really vigilant about these things, but I’m hoping that we can work in the middle and meet somewhere, that we can create a national network together through this.

And finally, the last part of it that I just wanted to add, is we are facing a geriatric crisis in health care. Doctors are retiring, and newer HIV doctors are not being trained as the old HIV doctors are leaving practice. That information is being lost somewhere. Sometimes for longer-term survivors, when we go to our experiences with medical physicians, we’re dealing with a mindset that’s one pill, one time a day, “Oh, what’s your labs?” Let’s look at your labs, and that’s it. But there’s a continuity of care that’s much larger than those numbers, if you remember our earlier doctors being our strongest advocates.

CS: It’s interesting you talk about that. I had a gap between—my doctor was changing locations, so I had to go to this clinic for about six months, and in the clinic, they would look at my chart and see HIV and give me a safe-sex talk, hand me a condom packet. And I’m like, “OK, sweetie, I wrote that safe-sex talk 30 years ago. I know how to put a condom on a banana for a group of people, so I understand what you mean.” They really don’t have a sense. They just have this pat answer. I know how lucky I am that I have a doctor that knows who I am when I call, knows all my history, knows that I’m a real human being who is having relationships with people and has a whole life and work and all of it, and not just three letters that one pill, one a day will take care of.

MR: That hits it on the head. Since we drafted the principles on this, I’ve been in awe. I love working with Hank Trout. I love working with Paul Aguilar. I love working with Vince Crisostomo and Harry Breaux [long-term survivors and authors of the San Francisco Principles]. These are all really wonderful individuals. They feel like my family, and I’m so delighted because I think all of us have had a lot of discussions about that and the impact to remind people to see where we are when we come in. Sometimes people just get caught up in the routine, like throw a condom on, do this, do that, but they forget who they’re talking to. I try to cut people a break overall, but I’ve had to fire doctors, actually. I encourage that if there’s a difficult relationship and you’re not going to have an honest relationship with your physician, then that’s probably not a good relationship to continue. And that’s what we did in the old days. I don’t wanna say the old days, it’s a state of mind.

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I had one doctor who was like, “I can’t be an advocate for you.” And I was like, “Can you recommend someone who would?” And he said, “I’ve never had anybody ask me that.” I said, “Well, maybe they should,” and I thanked him for his time. I think in the earlier years, we used to have books here, where we would go in and give community input on doctors so that we could kind of find doctors. We could go in and find out what community feedback was about each of the HIV doctors. And I miss moments like that in community activism.

CS: Across the board, if you don’t have a doctor you both like and trust, then you need to find another doctor. You need to be able to say, “Hey Doc, I’ve got this sore on my ass and I don’t know what it is. Will you look at it?” If you don’t feel comfortable with your doctor that way, then that sore on your ass is just gonna get worse, and it’s gonna become a pretty big problem.

I just feel like we barely talked about the San Francisco Principles. I mean, we talked a little bit about how they were created, when they were created, and the reason, but what are the things that are the most important things about the principles to you?

MR: I like the calls that we address. We do talk a little bit about the shortage of health care providers who are adequately trained. I think what’s also important is becoming our own advocates. You know, as we age, the generations behind us will be taking care of us. And I’m gonna quote Paul Aguilar for a moment—he said, “If we don’t tell our stories, somebody else will and they’ll get it wrong.” And I think telling our stories is super important. And I think part of what this is is hopefully a blueprint that will last over the test of time and as a tool for future generations to step in and say, “Hey, we could add more to it.” But one of the things that we wanted to revive from 1983 is the “Nothing about us without us” portion of it.

Because again, I’ll re-emphasize: I think we need to be at the discussion table when the outcomes affect us directly and we’re living by those outcomes. We need to be elected to those boards, and we need to be invited to sit at those discussion tables. For right now, at every discussion table I’m at, I’m opening and holding that door open for other people to follow. Just remember to pull someone behind you and to create a wake and get them to commit to bringing someone behind them—because it’s really about us. Like I said, it’s the outcomes over the egos that I think are more critical right now if we want to get something done. I always hear things like, we gotta wait for this thing or this right thing. “That’s a pretty box, but I want a red ribbon around it.” We don’t have time for that shit.

CS: I love the image though of walking through [the] door and pulling someone behind you. I think that’s really great. And “Nothing about us without us.” When you were talking about telling our stories, we’re in this moment right now, with regards to media, we have so many ways to tell our stories. It’s not just, you have to sit down at a typewriter and write, you can create a blog. You can create a vlog. You could do video. There are ways to tell stories in other ways besides old-fashioned conventional methods, which is one of the reasons we’re doing this right now, right? This is a newer medium, a newer way to get this information out to other people. I encourage people when they talk about how I really want to tell my story, I just don’t know how; I’m here as a resource. We have all these writing groups that are available for people and to become involved in—it’s another way to get involved in making changes in policies.

MR: I hope that we can work together at some point in the future. I want to include social housing in the national narrative, because I think housing stabilizes our ability: One, we stay compliant. But secondly, social housing is an ability for us to regulate the quality of living standard that we can provide each other and in community. I’m happy to say I’m a proud co-founder of a social housing project in San Francisco. It’s a co-op for people with HIV and AIDS called Marty’s Place. We want to have a healing place. I’d like to see this replicated for other folks in the community and to have it be committed to our future generations, being affordable for low-income people as well.

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