Speaking of Psychology: Surviving the AIDS epidemic, with Perry Halkitis, PhD, MS, MPH

Despite recent medical advances and drug treatments, HIV remains a burdensome condition for millions of people around the world. In this episode, psychologist Perry Halkitis, PhD, MS, MPH, talks about how the lessons from the survivors of the AIDS generation can inform the lives of those who are newly infected with HIV and those living with other challenging diseases.

Audrey Hamilton: It’s been more than 30 years since the height of the HIV/AIDS epidemic began in the U.S. The survivors of that epidemic are now middle-aged and are still learning how to cope. In the meantime, more effective treatments have changed how the disease is perceived by the public. Perry Halkitis, a psychologist and public health expert, talks in this episode about how psychological science is even more critical than understanding how to prevent HIV and also how to help those who live with all kinds of chronic diseases. I’m Audrey Hamilton and this is “Speaking of Psychology.”

Perry Halkitis is a professor of psychology and global health at New York University. For decades, his work has focused on the intersection of mental health and behavior with HIV prevention and treatment. His latest book, “The AIDS Generation: Stories of Survival and Resilience” focuses on 15 gay men who survived the height of the AIDS epidemic and are continuing to live with the disease today. Dr. Halkitis, welcome.

Perry Halkitis: Ah, thank you for having me.

Audrey Hamilton: Your book talks a lot about the resilience of a generation that saw the worst of the AIDS epidemic. As a psychologist and someone who’s living with HIV, it seems very important for you to talk about the mental and emotional impact this disease has had on survivors who are now in middle age. Can you tell us more about the people featured in your book and their coping mechanisms? Are these mechanisms any different from those of people who suffer from other chronic health conditions?

Perry Halkitis: So the 15 stories that are represented in the book are 15 very different stories. I could have told 1,500 stories. There was no shortage of them out there. But I chose 15 men who came from different walks of life, from different parts of the country, different shapes, sizes, colors – just to make sure that I captured the diversity of the experience of living with HIV for the last 30 years.

It would be very easy to tell one story. But in fact, HIV is a complicated phenomenon and people dealt with it in many different ways. So for example, one of the men in the book became very sick when he was in his early 30s and he is a composer and a piano player. And he thought all hope was lost. And the way he was able to sort of come out of that was through his music. He used his music as a coping mechanism. He talks about how as he was starting to feel better and he would sit at the piano, the music would fill his body again. So the emotional life that the music gave him revitalized him at a time when there were no effective treatments to actually destroy this virus.

And I think that that’s a very good example of the role that emotional life and social life plays in fighting this disease. For a very long time up until 1996 psychologists and social workers and other clinicians were the support system for people living with HIV. In 1996, everything changed with the advent of medications. For a long time people needed to attend to their emotional and social wellbeing. Other men turn to activism. One of the characters in the book, Jackson I call him, became a very, very prominent figure in Act Up. And, you know, people think of Act Up as an important institution that fought for the development of medications and certainly they did.

In the book, I take a slightly different approach in looking at this organization. And for me, what this organization did was it provided a place for individuals who are living with HIV to come together and support each other and understand each other. And created a social network and social cohesion and we know very clearly from the health psychology literature that that kind of support system leads to better health outcomes.

So, that’s two examples. The approaches that these men use to deal with their disease inform how many people deal with their disease, if they’re doing it in an active and a proactive way, which is attending to their physical wellbeing, their social wellbeing and to their emotional wellbeing.

So the lessons that we can take away from the men of the AIDS generation not only inform the lives of those who are newly infected with HIV, but also individuals who are living with any challenging disease in our society.

Audrey Hamilton: Now that people are living longer with HIV thanks to effective anti-retroviral treatment, what kind of psychological help do they need to cope? Are there psychological concerns related to people with HIV knowing that they will have to take a battery of drugs for the rest of their lives?

Perry Halkitis: So, the first thing that I would say in response to that question is that HIV is not just a medical condition. It is a bio-psychosocial one. It is an epidemic that is driven by a virus, but also by emotional and social factors and we can talk about that more fully, but with regard to your question specifically, taking a battery of medication is a tall order. It’s no easy task. Remembering every day that you’re HIV positive when you’re swallowing your pills is burdensome in some ways. As well as individuals live with and accept the fact that they’re HIV positive, there’s always that piece in their minds that they’re living with this chronic disease.

So psychologists and psychology, which for a very long time was critical in development and behavioral interventions to fight the spread of this disease, is as important today. What we don’t want to happen with this epidemic is to make it purely a biomedical one. We know that people, yes, they have to take their medications. Yes, they have to go to their doctors. But they also have a social life and an emotional life that we must attend to. And those individuals who will do best in taking their medications every single day, suppressing their virus, remaining healthy, will also be attending to their emotional lives. They will be getting support from friends and from clinicians and from family members that lift them up to enhance their wellbeing.

And so psychology still has as much, in my mind, to contribute to fighting this epidemic as it did 30 years ago and I think as psychologists we have been on the forefront and continue to be on the forefront of developing structures and systems and approaches and interventions that speak to the true elements of people’s lives.

Audrey Hamilton: Let’s talk a little bit about prevention. People know how HIV is transmitted yet they still engage in these risky behaviors. How has psychological research and practice helping people change those behaviors?

Perry Halkitis: So let me start by saying that people just don’t wake up one day and say “I’m going to be a risk taker,” “I’m going to be a drug user,” “I’m going to be a meth addict,” right? And I think that that’s an oversimplification and a dangerous oversimplification.

So, my work for the last decade has been informed by a theory of syndemics. And that theory is very deeply rooted in psychology. And here’s basically what the theory says: health problems coexist. So where you see mental health problems, you see substance use problems. Where you see substance use problems, you see sexual risk-taking issues. You see other diseases. You see obesity. You see smoking. You see all of these things functioning together, in some ways fueling each other. That’s one piece of the theory – that health conditions are overlapping.

But the other piece of the theory is that these health conditions are driven by psychosocial burdens. So individuals who experience discrimination and marginalization because of their race, because of their gender, because of their gender identity, because of their sexual orientation, because of their economic status – those individuals are feeling marginalized and experiencing emotional burdens at a much higher rate than others. Those emotional burdens in some ways engender the risk that people engage in because the risk is a coping mechanism for the realities of peoples’ lives.

So psychology is still really critical in understanding why HIV continues to exist in our country. When you think about who’s effected by the disease, primarily gay and bisexual men, primarily gay and bisexual men of color, African-American women and these are segments – these individuals are members of segments of our population that are continuing to be marginalized. And until we establish an equal playing field where all people have, you know, are treated the same way, that have the same rights, that have access to affordable good healthcare, we’re going to continue to see this epidemic lodging itself in those groups that are experiencing the most discrimination.

Audrey Hamilton: Well, let’s talk about the introduction of Truvada then. This is the drug shown to reduce the risk of contracting HIV. What impact do you think it’s having, or will have, on the arc of the HIV/AIDS epidemic, particularly among young people, some of these groups that you’re talking about who have grown up being constantly warned about the dangers of unprotected sex?

Perry Halkitis: So Truvada, as we know, is one of the HIV medications that is used for people living with the virus, which has been shown in trials to be effective in preventing the onset of HIV. So if you take one Truvada once a day and engage in risk-behaviors and are exposed to HIV, it is highly likely that you will not become infected because of this drug. When the drug is used that way, it’s called “pre-exposure prophylaxis” or “PrEP.” OK, so that’s great, right? Here’s the problem. Well let me stop there and step back and say here’s the plus.

Audrey Hamilton: OK.

Perry Halkitis: The plus is we have another tool in the arsenal to fight HIV. Great. We’ll take PrEP. We’ll combine it with clinical approaches. We’ll combine it with behavioral interventions. We’ll continue to do the work that we’re doing. So one more tool, a good tool.

But, this goes back to the point I raised earlier, which is we cannot think about this disease as purely a biomedical one, right? So, taking one pill once a day sounds like a great idea, but we know that HIV positive people have trouble taking their medications every day. Why are we to believe that HIV negative people who are not living with the virus are going to take their medications every day?

So, while PrEP provides a situation for us and an opportunity for us to fight the virus on another front, it has to be coupled with effective behavioral approaches that support taking the medication and with messaging and education, from our community, from our governments, from our religious leaders, that HIV is a disease that is very much part of our reality and should not be stigmatized.

And so I hope that we can nest PrEP within a larger framework of HIV prevention and care that thinks about physical, emotional and social well-being of individuals.

Audrey Hamilton: You mention the stigma surrounding people who are HIV positive. It still is a very serious concern and a barrier to care. What should psychology do to help overcome this stigma? Is it possible?

Perry Halkitis: Yeah, it’s amazing to me as a 51-year-old man now who saw the height of the epidemic and all of the pain and suffering of the ‘80s that the stigma still exists. And I was reminded of it recently when I saw the reaction to the Ebola epidemic and how people were terrified and, you know, being hospitalized for no reason, entering the country became more difficult. This was just – it raised all those emotions for me around what the ‘80s looked like, you know, where people were completely panicked.

So, stigma around HIV is very much still there. Some people still think HIV as a disease of gay people and of drug users. And in fact we know that it’s not that, it affects every segment of our population. But because of its historic roots and because sometimes more narrow-minded individuals use it as an opportunity to further marginalize some groups, stigma still exists. So, psychology is critically important in helping to undermine stigma that exists in our society.

And we have to remember one more thing – that people who might experience stigma because of HIV might be experiencing stigmas for many other reasons: because they’re gay, because they’re black, because they’re poor, because they’re from a certain neighborhood. And so, what psychology continues to need to do is to continue to message to people how it is that we expect to treat others, to message to those who are living with the burdens and with the stigma that it is OK to be vocal and to express one’s feelings and ideas when one is being marginalized, to continue to train psychologists for the future to work in hospitals and in schools, to teach people about the damaging effects of discrimination and marginalization. And I think that only psychology can do that. I mean, psychology is really critical in helping us advance how we think about issues like marriage equality. Psychology was really critical in the 1960s when interracial marriage was a complex issue for some people. And so, if you take the lessons from psychology that we’ve learned over the last 100 plus years and apply them to HIV, which is provide support to people who are living with the virus, to empower them, work to educate a new generation, normalize HIV in our society so that the stigma eventually dissipates.

Audrey Hamilton: Thank you Dr. Halkitis. This has been a very interesting conversation. Appreciate you taking the time.

Perry Halkitis: Thank you for having me.

Audrey Hamilton: You can check out Halkitis’s work and his latest book on our website . With the American Psychological Association’s “Speaking of Psychology,” I’m Audrey Hamilton. 

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HIV/AIDS