Darien Taylor uncovers insights and inspirations in HIV research

Descriptive Transcript

music // Title card reads Back to Basic Toronto, 2014. Darien Taylor. Back to Basic Interviews.

Darien Taylor sits in a series of one-on-one interviews with conference attendees and presenters. The video quickly cuts between each interview set-up as she introduces her guests. Music continues to play in the background.

Darien Taylor: Hi there. I’m Darien Taylor. I’m a woman living with HIV. I’ve been living with HIV for over 25 years, and working in the HIV field for about that long, as well. And I’m here today with Andre Ceranto. Dr. Eric Arts. Jon Cohen. Polly Matzinger. Sara Dizzell. Nicola Deliso. Jim Lavery. Wangari Tharao. Colleen Price.

The video returns to Darien’s interview with Andre Ceranto. The two sit beside each other half-facing the camera; the same set-up that is used for all of the interviews.

Darien Taylor: I was just wondering about your your general impressions of the conference so far.

Andre Ceranto: Well, so far, it’s been great. I think one of the refreshing things, for me, is to be able to see a lot of PHAs attending the conference. We always have PHAs attending OHTN conferences, but I think this one, having this great amount, is really, really nice.

Darien Taylor: Yeah, it’s something like 3 to 1. PHAs to researchers or something like that, so that is great.

Andre Ceranto: Amazing. So we are a majority.

Darien Taylor and Andre Ceranto: Yay! [they jokingly high-five]

The video cuts to Darien’s interview with Nicola Deliso. He’s holding a notepad as he speaks.

Nicola Deliso: The OHTN conference, for me, is very important because, as a person living with HIV — and I’ve been living with HIV since 1983 — I’m able to understand it more. Because I wasn’t able to understand it, before, because it was all Greek to me, because of all these medical terms, right? But it’s — I’m learning from deconstruction and the explanation that they’re giving me, so I find that it’s a good liaison and tool.

The video cuts to Darien’s interview with Wangari Tharao.

Wangari Tharao: A lot of the time you tend to get bits and pieces; you get a bit here, you get another bit there, and another bit there. This feels much more holistic. There’s a focus in an area a lot of us are interested in, and focus to actually ensure that those of us who are participating, who are not basic scientists, actually get to understand the science.

The video cuts to Darien’s interview with Colleen Price.

Colleen Price: My exposure to basic science was limited, and I had it my own mind that it was just above me, or, yeah, that I would have difficulties understanding it. As well, my interests are primarily in the social sciences. That’s what my training is. But I’m very grateful and glad to be at this conference, because I’m learning all the concepts, and the researchers are working so hard to make very, very complex matters understandable. And I’ve learned a lot just in the course of today, alone. And I no longer fear basic science.

Darien Taylor: That’s a great outcome.

Colleen Price: It’s perked up an interest to take closer looks, and it’s raising a lot of questions, and that excites me.

The video cuts to Darien’s interview with Andre Ceranto.

Andre Ceranto: When I was hearing that presentation, I was thinking, wouldn’t it be nice to have a presentation that talks, actually, just about the opposite. So, everything good that has happened so far with HIV. Which we all know. But, I think, making that effort to kind of have a session on — to present those accomplishments, I think it would be great.

The video fades to black and there is a short pause before it fades in to Darien’s interview with Jon Cohen. The mood has changed and the background music has stopped.

Darien Taylor: Throughout your talk this evening, I sensed a feeling of frustration, perhaps even disgust, with the potential that we have to bring an end to AIDS, but where we are in reality. Can you tell me a little bit about where that feeling comes from?

Jon Cohen: I still watch people die from AIDS. I work in Tijuana regularly, now, on an AIDS photo book that I’m doing with the photographer Malcolm Linton, who I’ve worked with for many years. I still see things that I saw when I first started to do this, that I shouldn’t be seeing now. The drugs we have are really effective, and they’re safe, and the prevention efforts have proven all of these modalities at work with science. Good, solid studies show that harm reduction for people who share syringes works. You can get people to stop sharing syringes. You can stop transmission through syringes. We know that. How to prevent mother-to-child transmission of the virus. We know all of these things about education that just aren’t being applied strongly enough in most places.

And, so, yes, I get very frustrated. And I get frustrated on a very personal level, as well, because I watch people I know, and interview over time, and care about, get infected, or get sicker in front of my eyes. I can’t do anything for them. And their their cases are complicated; I don’t mean to trivialize it, you know? Many people who struggle to take their medications have lots of problems in their lives. Their lives are far more complicated than my life, so I don’t blame them, but i know from examples in places I’ve been that do things really well that you can help almost anyone if you really have talented, creative, and smart people who care. Almost anyone can live with HIV for a very, very long time.

The video fades to black and, after a short pause, fades in on Darien’s interview with Eric Arts.

Darien Taylor: It’s not only people who’ve been around for a long time and gone through [unintelligible], monotherapy, and some of the drugs that weren’t so effective, that have resistance. It’s also people who aren’t able to be adherent, and those are often people who have who are marginalized in some way, who have mental health issues, who have unstable housing, who have an active drug use. And so, what you, unfortunately, see is that, you know, the small — that 5-10% of people who need the new drugs are often marginalized. And I think that’s a really dangerous thing.

Eric Arts: Yeah, absolutely. I mean, educated gay white men — it was relatively easy to provide them treatment and hope that they would be adherent. Although, even in those cases, like I said in my talk, I mean, I sometimes can’t finish a course of antibiotics, so, you know, so, how you can take a drug every single day and not forget a dose or, you know, not go on a drug holiday, if you will, it’s amazing. But when you look at the more marginalized populations, like IV drug users, it’s just understandable that there’s bigger problems with adherence.

And you’re absolutely right. Those are the ones that are developing treatment. They are the hardest ones to manage in treatment. It’s hard to get them to come back for their visits, and it’s hard to monitor them for a successful treatment. So, that is another population.

And then the other thing to remember is, when a person develops resistance, they also now have virus in their system. And they’re now a transmitter in the population. And, when they transmit, they’re transmitting, sometimes, multiple drug-resistant viruses. And then that becomes a problem for future treatment of the new infected individual. So, it — this problem hasn’t gone away. And, you know, everyone I talk to, especially in community groups, has said, “Oh, AIDS. Isn’t that a problem that we’ve solved? We’ve got good drugs, now. Why is that a problem?” And it is still a huge problem. And, you mentioned Africa. It’s a huge problem in Africa, in the sense that we’re providing lots of people with treatment — and that’s fantastic. When I started 15 years ago, I could just watch people die, even though I knew those drugs were working, and they were effective here. And now, the problem is supply. I mean, in developed…

Darien Taylor: Constant supply, yeah.

Eric Arts: … countries, it’s sort of, “Our budget doesn’t look so good right now. Maybe we’ll reduce our funding for PEPFAR or the AIDS programs.” And that has huge consequences, and resistance emerging in those populations is a nightmare. I mean it’s really problematic.

The video fades to black and, after a short pause, fades in to Darien’s interview with Wangari Tharao.

Darien Taylor: It is true that there’s historical precedent for the black communities’ skepticism and fear of research. Can you fill in that a little bit?

Wangari Tharao: We, you know, when we were — we started recruiting for the co-infections study. We asked the peer recruiters to actually start collecting information on why people were refusing to participate. So, any refusals, ask people simple questions. You know, why don’t you want to participate? And jot down for us so that we could actually try and figure out how to deal with those type of those type of barriers. And, people talked about, usually, you know, “You’re collecting samples for the government, so that they can start following us. I don’t trust that. I don’t trust research, and I don’t trust what you’re going to do with my information.” And people would actually give examples of the Tuskegee…

Darien Taylor: mm-hmm.

Wangari Tharao: … and it’s in so many people’s minds, you won’t actually —

Darien Taylor: The syphilis experiment black men where black men were allowed to get syphilis and they were in a clinical trial and were observed to see the process of syphilis…

Wangari Tharao: Natural progression.

Darien Taylor: … developing without treatment.

Wangari, Tharao: Yeah, yeah, so people remember that. And people also have experiences of, you know, if it’s not historical experiences of slavery, of colonization. And I hear people asking, “Oh, people should forget about that. It happened a long time ago.” But, you know, people forget that we have a very oral community. so we passed on information from, you know, your parents or your grandparents.

For example, for me, when I think about issues that emerged in Kenya during the fight for independence, I wasn’t there. But I know my grandmother lost five of her children, her husband, the same night. So, and this is passed on through our family. We have an understanding of colonization that is very — it may have happened before our time, but it’s passed on through our family, because we lost a lot of family members that — the night of the fighting for independence. So, people can’t tell you, “Forget about that.”

So, we have relationships with institutions and government. We come from a place whereby it has not been a very good relationship. So, those historical connotations and, you know, understanding still impact the way we think about government and the way we think about, you know, “You didn’t care about me before, so why should I believe you care about me now?”

Darien Taylor: And why should I participate in your research?

Wangari Tharao: Yeah.

The video fades to black and, after a short pause, fades in to Darien’s interview with Jon Cohen.

Darien Taylor: Do you anticipate that, in some of the clinical trials that may begin to happen in humans, out of this research, that there will be issues in terms of recruitment? Given that we have effective treatments right now?

Jon Cohen: It’s a tough question. I think that there certainly was more motivation to take part in treatment trials when there was a hunger for better treatments. People were dying, you know, to get in the trials, literally.

Darien Taylor: Yeah.

Jon Cohen: But, you know, some of those trials were placebo-controlled trials, too. Which meant that you randomly were assigned to get a dummy pill or the real thing. And so, there was a whole lot of altruism there. But when people are desperate, they, you know, desperate times call for desperate measures. They do take more risks. I think that there may well be a reluctance to join studies these days, but, you know, the HIV community is so filled with altruism, and community — and a sense of community that it’s unlike any other disease.

I don’t really think it’s going to be a problem, because the trials don’t have to be that big. You don’t need that many people to prove that a treatment is better than an existing treatment. So, I haven’t heard of that problem yet. It could — it certainly could happen with some of the riskier strategies out there. And, you know, especially if you’re doing really well on treatment, why would you want to take a risk? But it doesn’t take that many people who want to take a risk and who volunteer and who want to volunteer and help others.

Darien Taylor: Yeah, and I think — I’m glad to hear you characterize the HIV community the way you do, because I also — I’m part of it, and I feel very strongly that there’s a tremendous sense of community. And, you know, I like to believe that there is a kind of altruism. A sense of, you know, the mission isn’t really completed until we end AIDS. And that involves a cure, but isn’t limited to a cure.

The video fades to black and, after a slightly longer pause, fades in to Darien’s interview with Sara Dizzell. The mood has changed again, and the energy level picks up.

Darien Taylor: So, Sara how did you become interested in this line of research?

Sara Dizzell: So, essentially I find HIV a very intriguing virus, in the ways that it’s able to evade host immunity and essentially perspire within the human body. So, I guess the virus itself intrigued me to get very interested in it. Also the fact that it impacts so many people. And, I mean, although we have been looking at this virus for several years, and we’ve come an extremely far way, there is still a lot to be learned about the virus itself.

The video cuts to Darien’s interview with Polly Matzinger. Matzinger gestures with her hands as she speaks in an animated way.

Polly Matzinger: So, the first part of the danger model was actually created in the middle of discussion with Ephraim Fuchs. And that’s one way ideas come up. When you disagree with someone, and you respect that disagreement, and you really start arguing about it, without getting personal, you could come up with all kinds of wonderful things.

So, the idea that the immune system fights things that are dangerous came up that way, with Ephraim. Neither one of us remembers which one of us thought of it, actually. That’s the definition of danger. How does the immune system define danger — that came in the bath.

Darien Taylor: Okay

Polly Matzinger: And I’d been thinking about this for a year, and Ephraim had been thinking about it for a year, and we could not come up with anything. And I spend a lot of time in the bath. It’s — you spend enough time in the bath to the point where your skin gets crinkley, and you can get into a state like that early morning state, when you’re not awake, and you’re not asleep, and your brain is functioning on its own.

Darien Taylor: Mmm-hmm. It’s very creative, that space.

Polly Matzinger: It can be, yeah. The other thing that can happen is all of a sudden you remember something that you forgot, and you have to jump out and, you know. do it. “Oh my god! I forgot to pay my taxes!” Right? Because things jump out.

But anyway. So, good things sometimes also jump out. And the idea that something is dangerous if it causes damage came up in the bath. Archimedes also had his best idea in the bath. And, you know what? Both of us — at least, the history is — he jumped out of bath and ran through the city naked. I didn’t run through the city, but I did jump out of the bath and run through the house naked, because so much energy comes up when you suddenly have a creative thought that you can’t sit still.

Darien Taylor: Yeah.

The video cuts to Darien’s interview with James Lavery. They seem relaxed together; we can tell they’re friends.

James Lavery: I did my PhD thesis on assisted suicide and euthanasia and people with HIV and AIDS.

Darien Taylor: Yeah, that was how we met, on the provincial…

James Lavery: Yeah, that’s right. And I had — and so I’d done this study, and it was a fascinating experience for me because I came away — I genuinely didn’t understand what led people to those decisions. And so, as a researcher, I was trying to sort out what, you know — trying to understand that better. And that was really my first opportunity to sit face-to-face with 32 people and hear the commonalities in these stories of rejection, and marginalization, and suffering, and the, you know, what people had really gone through at a personal level. It was transformative for me. I was very naive, and, to see the hardship and then to see the way that the community mobilized, and the the way that they just refused to be suppressed by that and to, kind of, spring into action, and to provide care, and do all those things…

I mean, you may remember we actually had — we ended up with different positions on it.

Darien Taylor: Yeah.

James Lavery: I was actually very much an opponent of assisted suicide, because in my mind, I thought, “No, you can’t let society lead you to this path, where this is the only good option for you. You must demand a society — the kind of care that you guys are already demonstrating.” You know, so — and, regardless of where positions fall out, I think, for me, just that that was my first real entree into the community, in the sense of that real, face-to-face, getting to learn more at a deeper level of people’s stories. And, if you’re not moved by these stories, then, you know, you should definitely be in a different line of work, I think.

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