Exploring another pandemic: HIV/AIDS
It’s been nearly half a century since the HIV/AIDS epidemic emerged. In the 1980s, before medical interventions or effective prevention methods were developed, it was a death sentence. Throughout the years, legislation, stigmatization, and limited resources have created costly setbacks in overcoming the disease and its spread. Today, treatment and prevention has evolved so that many people with HIV/AIDS can now live longer, healthier lives. But, there is still a long way to go before we can say that we’ve beaten AIDS. In this episode we look back on the evolution of this pandemic and why it has persisted for so long.
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0:00:05.0 Speaker 1: The word pandemic has become part of our daily vocabulary over the past few years. While the term lately, has become synonymous with COVID-19 and its rapid global spread, a pandemic refers to any disease that spans several countries and infects a large number of people. Today, we're going to talk about a different pandemic.
0:00:23.6 Gary Harper: Because the epidemic was so new in many ways, there were different issues that we had to deal with as members of the gay community that are very different now. So for instance, one of them was getting an HIV test.
0:00:36.9 S1: Gary Harper is a professor of Health Behavior and Health Education at the University of Michigan School of Public Health. His research and community work focuses on the mental health and sexual needs of adolescents and young adults from marginalized groups. He has worked collaboratively with communities to develop and evaluate mental health, sexual health and HIV prevention programs for youth. His prevention advocacy is personal.
0:01:01.5 GH: So nowadays you can go to Walgreens or CVS and get a home test kit and in 15 to 30 minutes, you know your status. Back then, you had to go in to certain places, sometimes it was Planned Parenthood, sometimes it was a government or a county health department or clinic. I remember getting my first HIV test and going into a county health department clinic, being treated very poorly, being asked a lot of questions... Very invasive, personal questions about my sexuality, about my identity. And again, because I didn't realize that life could be different, I just accepted it.
0:01:42.0 GH: They drew a lot of blood and then I had to wait for two weeks. And keep in mind, this is when HIV and AIDS was a death sentence still. My sister flew in to get the results with me, because I was so scared. And again, just the pressure of my whole family really on my shoulders... The first person to graduate college, the first person to go to grad school, the person that everyone in my family was looking up to and saying, "He's gonna be a doctor."
0:02:10.9 GH: If I would have tested positive, all that would be gone. It would also at that point, getting an HIV diagnosis also outed you as being gay. And so the weight of that... I think at that time, I was like 22 and carrying that burden. And so my sister flew in... My sister and I have always been close... And they wouldn't allow anyone in the room. And I remember going in the room to get my results and I tested negative, and I just started crying uncontrollably and I couldn't talk, I couldn't move. The nurse was very uncaring, really basically pushed me out of the office. My sister was there, she saw me crying and was terrified and just ran over and hugged me and said, "We're gonna get through this. I'm here. I'll listen." I couldn't even tell her that I was negative. I was so emotional, and I was really crying uncontrollably. And it was after a little while that I was able to finally tell her, that I was okay.
0:03:10.6 GH: Thinking back to all that fear, all that anxiety, having to hold that for two weeks... Thank God that things are different now, and that people can get tests quickly and rapidly. Living with HIV is more of a chronic disease now than it used to be, and it's not that death sentence, that it used to be. Yeah, I'm glad no one else has to go through that. It was horrible.
0:03:39.4 S1: HIV or human immunodeficiency virus is the cause of the chronic health condition known as AIDS, or acquired immunodeficiency syndrome. The virus first appeared in the 1980s and brought about one of the most devastating pandemics in human history. Just as vaccines and other public health strategies have lessened the impact of COVID, so have advances in treatment and prevention helped turn AIDS into a manageable condition for many people. Today, we'll take a look at the HIV/AIDS pandemic, its history, associated issues like stigma and access to treatment and what HIV/AIDS looks like now.
0:04:15.6 S1: Hello and welcome to Population Healthy, a podcast from the University of Michigan School of Public Health. Join us as we dig into important health topics, stuff that affects the health of all of us at a population level, from the microscopic to the macroeconomic, the social to the environmental, from cities to neighborhoods, states to countries, and around the world.
0:04:46.9 GH: As a gay man who was coming into my own sexuality and identity and sense of self during the pandemic in the '80s, it was very challenging in many ways. So I graduated from undergrad in 1985. At that point, we knew about HIV but we basically knew that you would not survive if you were living with HIV. Very few people were, so it really did have a huge influence on my sense of self, my identity. So there was this confluence of HIV being this disease that was seen primarily as a gay disease, and then we have the pathologizing of sexuality and sexual orientation. Even in my department people were studying in air quotes, homosexuality as a existing form of pathology. So my entire career was about health and mental health and this new disease was then creeping up into my life, my consciousness, and having to block that out as I'm developing as a professional. So it was stressful.
0:06:01.7 GH: During graduate school I started losing friends, who were diagnosed with HIV and then progressed on to AIDS and then passed. I had people who I was very close to who committed suicide, because it was a death sentence. One person in particular, my very first boyfriend in graduate school, got kicked out of the house when he was diagnosed with HIV. His parents locked all the doors, changed the locks, and he eventually committed suicide because of the double stigma of being gay and living with HIV. But I was bound and determined to do something about it, so that's when my activist side was getting activated in the community, doing as much as I could to educate, to attempt to liberate, to support people. But I kept fighting because I knew that things could be different, and I always had hope, even as I was burying friends and going to funerals, I always felt like there was going to be a change.
0:07:08.4 S1: Progress toward controlling the HIV AIDS pandemic has been greatly impacted by policy and legislation, both nationally and globally. Over the years, Harper has watched how legislation has translated to the real world.
0:07:21.1 GH: The American Psychological Association did trainings on how to train psychologists to work with different people living with HIV. Well, I attended a training workshop and really fell in love with the work because it was really a place where I could take myself as a scientist, as a clinician, and as an activist and put it all together. Early on, I did a good deal of work on getting increased funding and sustained funding for the Ryan White CARE Act, which provides for a range of different services for people who are living with HIV. Then I also started to do more work related to allocation of funds for HIV research and trying to get an increase in funding.
0:08:07.8 GH: The thing that's challenging is that the funding for HIV research fluctuated depending on who is in office. And even what individuals working in the CDC, for instance, could do fluctuated depending on who politically was in power. So under the second Bush administration, as soon as Bush came into office, all mention of condoms was erased from the CDC's website. The President's Advisory Council on HIV... Everyone on that advisory council was let go and it was replaced with people who supported abstinence till marriage programs. I've continued since then to work on other LGBT health and human rights issues at the federal level, at the state level, also globally. And unfortunately, we're in a space right now, where we have the largest number of anti-LGBTQ+ legislation in the country in the history of the US. Thankfully when it comes to HIV, things are much better now.
0:09:10.7 GH: The one area where they are still lacking and where there's still a great need for policy work is related to HIV criminalization laws. HIV transmission is criminalized in I believe all states in the US. Now, there is no federal legislation, it's legislated at the level of the state. A lot of states have HIV criminalization laws that date back to the '80s, when we didn't know as much about transmission. And those laws are used as ways to further oppress different groups of people, predominantly people of color and gay men and trans women.
0:09:50.7 GH: Now in some states those laws have changed but in other states they are very archaic. They're not based on science, they're not based on anything other than fear. And we know now so much more about transmissibility of HIV. So for instance we know that if someone is on medication and their viral load is undetectable, there's no chance of transmission. And again though these laws are still very much criminalizing people who are living with HIV, and mandating that they tell all sexual partners about their status, and if they don't disclose that status, then they can be brought up on charges and incarcerated.
0:10:39.3 Rivet Amico: Some people did question as to whether or not AIDS is still considered an epidemic and I would push that further to say whether or not it's still considered a pandemic. And arguably, yes it is. There's still a wide number of countries, really around the world that are impacted by HIV and making it qualify really as a pandemic. We know that about 38 million people are living with HIV today, and of those about 28 million are on life-saving antiretroviral therapy keeping them alive, but that leaves a really large number of people who are not able to access or to use antiretroviral therapy. So even though in some cases it's no longer a death sentence without effective treatment, it certainly is, and that certainly is a very real situation and experience for a number of people around the world.
0:11:32.3 S1: Rivet Amico is an associate professor of Health Behavior and Health Education at Michigan Public Health. She spent her career working on HIV prevention and treatment, and her research includes work with engagement in HIV care. She joined us to shed some light on some of the key milestones the HIV community has seen across the evolution of the pandemic. She starts by explaining a public health model used to outline the stages that people with HIV go through, as they pursue viral suppression, called the continuum of care.
0:12:01.4 RA: Continuum of care is a way of thinking about someone's experience or journey as they're living with HIV from getting diagnosed or becoming aware of your status to then linking in with treatment or medical care in order to get access to antiretroviral therapy. Getting ART, or antiretroviral therapy and then using it and being adherent, optimally will then lead you to viral suppression. Being able to characterize each step reaching towards viral suppression is really critically important because subsequent studies have showed that viral suppression can also decrease one's odds to almost nothing of onward transmission of HIV. So that's where you want to get to, both from a public health perspective but then also in terms of one's own health and well-being. One of the things that the continuum of care really opened the gates for is this common metric that could be used no matter where you are and whatever location to really look at how are our services and how are the structures kinda doing to help people to become aware of their status? So you can look at proportion testing. And of those, how many are being linked to care, and of those, how many are getting on ART, and of those how many are reaching viral suppression.
0:13:19.5 RA: The End The Epidemic plan really came out in 2021. It was issued in the United States. Rather than kinda focusing on all of the US, it was identified as really wanting to concentrate our efforts in the areas in which there's a substantial burden of HIV. So that included 48 different US counties with the highest HIV burden. Michigan in Wayne County was actually identified as one of those hot spots. And so the idea with End The Epidemic is to really gather resources, make sure that the areas and the communities that are working in those hotspot areas are well-resourced to be able to implement prevention programs as well as really try to optimize people getting into treatment.
0:14:07.3 RA: U = U is Undetectable = Untransmitable. So undetectable is essentially the term that is used for when someone living with HIV has a blood test that looks for how much virus is in their blood, and there's so little virus that the test itself can't actually detect it. And so that's called undetectable. And that relation to untransmitable was the result of a series of studies that went on that provided strong support that if you are undetectable, the odds of you transmitting HIV to another person are so small, they're actually negligible. It's almost zero. And for several years after the publishing of those studies, it was not like you were seeing this on billboards, these were not on signs in doctor's offices, so the populations that could have benefited most from learning about this, for example, people living with HIV. Imagine how that would change one's sense of stigma, quite frankly, that they otherwise were receiving.
0:15:22.6 S1: PREP, or pre-exposure prophylaxis, has been one of the most impactful recent milestones in this decades long fight. Dr. Amico explains what PreP is and how it works.
0:15:25.4 RA: When HIV enters the body, it looks for a very specific kind of cell, a CD4 T-cell, which is part of your immune system. It looks for that cell and it invades that cell, essentially taking it over and producing lots more copies of HIV. When someone is taking PrEP, essentially that drug builds up and builds a protection around those cells if you will. And so when HIV enters the body, HIV is unable to get into the cell and make a whole bunch of copies of itself so that it prevents HIV from being able to establish an infection. And that's important 'cause it doesn't prevent HIV from entering the body, it actually works internally. So it protects the actual cells that HIV would go after. Initially when PrEP was approved by the FDA back in 2012 and CDC started issuing recommendations for prescribing, it was not uncommon to read or to hear people talking about PrEP being appropriate for someone who is at high risk, alternatively saying it's for people who are high risk.
0:16:34.9 RA: What that is meant to imply is that it's someone that has risk or vulnerability for an exposure to HIV. And where that kinda went wrong in a few ways is that when studies came out or reports came out that said, "This is for high risk people," it started equating PrEP use with being a certain kind of person or having these certain characteristics, which is entirely inaccurate. Now, what you got is this sense and this stigma that kind of developed around that about someone who use to risk was particularly promiscuous or was a super high risk person. And typically that gets associated with someone who doesn't really care about themselves, for example. And that's actually the opposite of someone who goes through all of these steps to find PrEP, to get on PrEP. The burden of taking it daily. These are people who are highly motivated and very committed to their self, to their well-being, to the well-being of their partners.
0:17:40.0 RA: The most recent CDC guidance on PrEP prescribing actually tries to step back a bit from that, and advises prescribers not to kinda be on the look out for someone who's at risk or at high risk, but rather anyone, adolescent or adult who's sexually active, to let them know that PrEP exists and give them information around it. High risk, who defines that? One person's high risk might be someone else's low risk. And we know that some of the ways of describing high risk are completely inappropriate for certain groups of people. For example, cisgender women living with HIV, their most commonly reported factor that led to acquisition was sex with their main partner. So that's not someone that we would typically say meet the criteria for most risk screeners, but that is their high risk.
0:18:39.8 GH: When I think about what HIV looks like now versus 1981 or 1985, I think that we have made amazing strides in terms of medication. So early on, a death sentence, today, really it's a chronic illness. And even the dosing that we have currently for HIV treatment for those that are undetectable, can be as little as a shot every other month. To see that change from '81 to 2024, to see that huge change in treatment, I think is incredible. I think there's been a big shift in acceptance of people living with HIV, but I do think that it is not where it needs to be. I think stigma is still the number one kind of facilitator of HIV because there's so much stigma that people are afraid to talk about it, afraid to disclose, afraid to get tested still. I think that in terms of some of our biggest challenges, yeah I would go to stigma as the number one. I think that we still have a long way to go in this country and across the world. We need to talk about HIV more. We need people to realize it hasn't gone away.
0:19:53.8 S1: Kristi Gamarel is an assistant professor of Health Behavior and Health Education at the University of Michigan School of Public Health. She's trained in both Public Health and Psychological counseling. She conducts community-centered interdisciplinary research focused on stigma, close relationships and LGBTQ+ health. Gamarel, takes us deeper into the discussion around HIV stigma and gives us a look at how this community still encounters oppression.
0:20:38.7 Kristi Gamarel: HIV stigma continues to be pervasive. In global context, and in the United States, we're seeing an increasing awareness of racial and ethnic inequities. However, this hasn't always been the case. I think we're at this time right now in the HIV epidemic, and even when we look at funding priorities, we're starting to see a real focus on needing to attend to racism, cisgender-isms, HIV stigma... All of this more structural and social factors that are contributing and have continued to contribute to allowing the HIV epidemic to go on for so long.
0:21:54.2 KG: One of the things that we're gonna need to do as public health practitioners in this field is to make public health campaigns relevant and meaningful to community members, because we still have a tendency to use terminology that doesn't resonate or isn't as meaningful to community members. But these types of strategies along with these unifying approaches, I think is gonna be a way that we can, as a society, start to destigmatize HIV. Historically... And I think this is across many public health campaigns that we've relied on fear tactics where we have shared with communities, "You are gonna get HIV." We've told in our public health campaigns, historically in HIV epidemic for gay men, for transgender women that you're gonna get HIV, you can't trust anyone, you can't love anyone and trust them explicitly. And these types of messaging really backfires. They're stigmatizing in and of themselves, and we know that they can lead to counter-reactants. These types of public health messaging have contributed to stigma, and by telling people you're going to get HIV, I think that it turns people off immediately.
0:22:32.4 KG: The work that I am most situated in is serving transgender women who have been very much erased within our HIV prevention and treatment research until at this really exciting point right now. And I think some of the messaging that we have done as public health practitioners and HIV researchers and scholars, we haven't designed our public health messaging with community members. And so they can be quite un-affirming to who people are and erase their identities and their experiences. And I think those are some of the missteps that we've taken that have contributed to people disengaging from HIV prevention and HIV treatment... Not even wanting to be a part of research or programming. And I think these are things that we're seeing a shift right now in really taking seriously community-based participatory research principles and thinking about how community members can shape those messages themselves and what is most resonating for them.
0:22:43.1 KG: The power of some of our public health messaging as an example, U=U, is really changing the paradigm in which people are no longer just seen as vectors of disease. A person living with HIV can live a long and healthy life, they can have satisfying and fulfilling sex lives and not worry about transmitting HIV to their partners. And I think that these types of strategies and public health campaigns are going to be really important for de-stigmatizing HIV and AIDS.
0:23:03.2 S1: Gamarel, believes that a holistic healthcare model is one of the best ways to serve members of communities who are disproportionately affected by HIV AIDS.
0:23:08.7 KG: When I think of holistic healthcare, I'm thinking of holistic health in the sense that we're supporting people in all facets of their health. We see this a lot in our youth-serving organizations, where we see wraparound services that co-locate HIV prevention and treatment services along with mental health care, substance use, there's positive youth development programming and food pantries. And these are really wonderful ways that community organizations have worked really hard to support the needs of communities that are most disproportionately impacted by the HIV epidemic.
0:23:19.1 KG: Our programs are housed within these organizations to address trauma and economic vulnerability, and their peer led to help people get access and entry into these services that provide a more holistic support around HIV prevention and treatment, other forms of health care, as well as mental health services, and insurance support, housing support, and all... Other sources of case management as well. As an example, the Ruth Ellis Center in Detroit... They are a one-stop shop in providing resources and support to LGBTQ youth, primarily youth of color who are marginally housed or experiencing homelessness. What we see though is folks age out of those services. And while youth service or serving organizations try to continue to expand the age range, they're only funded for youth and young adults.
0:26:20.4 S1: The work being done across public health, the medical field, and community organizations is making a difference in the lives of the people who live with HIV today.
0:26:30.2 GH: I see so much strength and I see so much resilience... We really try to let communities, let young people tell us about their strength. To tell us about their power. For instance, on a lot of the qualitative work that I do instead of starting out by, tell me the challenges of being... Blah, blah, blah. I start off with, tell me what is good about being a transgender teenager. Tell me about the strength of the trans community. Tell me about a joyful moment you've had as a Black gay young man.
0:27:13.2 GH: So I start with the positive and I start with stories. And I start with people sharing parts of their lives that show how they've been able to resist all of this pressure, all this oppression, and still enjoy life. So many young people have never had anyone sit down with them and just say, "I value you. You're a good person. You have a purpose in this life." So they're moving through the world, not feeling special, not feeling a sense of agency, a sense of power, and we need to work on that. We really need people to feel like their life has a meaning and has a purpose. And we can do so much, sometimes with so little, just letting someone know that we care and that we value them, and that their life has meaning.
0:28:27.3 S1: On the next edition of Population Healthy.
0:28:29.9 Speaker 6: The thing is that these are moving targets. Health information is dynamic and sometimes it's a lumpy process of being wrong and not knowing the full picture and learning as you go along and having to change guidelines and having to have people trust you when you're learning yourself. And we're just not in that kind of an environment right now where people can make those kinds of mistakes and still have trust.
0:28:55.7 S1: Thanks for listening to this episode of Population Healthy from the University of Michigan School of Public Health. We're glad you've decided to join us and hope you learned something, that will help you improve your own health or make the world a healthier place. If you enjoyed the show, please subscribe or follow this podcast on iTunes, Apple podcast, Google Play, Stitcher, Spotify, or wherever you listen to podcasts. Be sure to follow us at UMICHSPH on Twitter, Instagram and Facebook, so you can share your perspectives on the issues we discuss, learn more from Michigan public health experts and share episodes of the podcast with your friends on social media. You're invited to subscribe to our weekly newsletter to get the latest research news and analysis from the University of Michigan School of Public Health. Visit publichealth.umich.edu/news/newsletter to sign up. You can also check out the show notes on our website, population-healthy.com for more resources on the topics discussed in this episode. We hope you can join us for our next edition where we'll dig in further to public health topics that affect all of us at a population level.
In This Episode
Professor of Health Behavior and Health Education
University of Michigan School of Public Health
Gary W. Harper is a professor of Health Behavior and Health Education and Global Public Health. Harper's research and community work focuses on the mental health and sexual health needs of adolescents and young adults who experience varying degrees of oppression and marginalization, especially Black gay/bisexual young men, transgender and non-binary youth, and youth living with HIV.
K. Rivet Amico
Associate Professor of Health Behavior & Health EducationUniversity of Michigan School of Public Health
K. Rivet Amico is an assistant professor of Health Behavior and Health Education. She has spent her career contributing in the areas of HIV-prevention and treatment social-behavioral theory development, intervention implementation and evaluation and measurement. Her research includes work with engagement in HIV care, PreExposure Prophylaxis.
Associate Professor of Health Behavior & Health Education
University of Michigan School of Public Health
Kristi Gamarel is the John G. Searle assistant professor of Health Behavior and Health Education, trained in both public health and psychological counseling. She conducts community-centered, interdisciplinary research focused on stigma, close relationships, and LGBTQ+ health.