The Cure Chronicles: HIV with Susan Cole
Susan Cole is an award-winning HIV activist, broadcaster and writer who actively advocates for the rights of people living with HIV.
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Jeff Galvin: I'm thrilled to be joined today by Susan Cole, an award-winning HIV advocacy broadcaster and writer who actively advocates for the rights of people living with HIV. Susan has been named Woman of the Year by NAZ OSCARS for her work with women of color living with HIV and has also been honored as one of the top 10 black HIV influencers in the United Kingdom. She leads the community engagement and broadcasting activities for the HIV information charity NAM Aidsmap.
Jeff Galvin: Welcome Susan and thank you for joining me. So, Susan, how did you get into HIV activism/advocacy? Tell us a little bit about your backstory. Where do you come from and how did you become associated with this community?
Susan Cole: Sure, absolutely. I knew about HIV when I was at university. We had campaigns of tombstones and icebergs, and at the time, I very much thought that HIV was something that affected other people and would never actually affect me.
But I was diagnosed with HIV through a routine immigration test in America. I just got married to my second ex-husband (I've got three ex-husbands so far). And yeah, as part of the immigration process, I was having an HIV test, and it did not cross my mind for a moment that it could come back as positive. But the doctor shuffling papers said to me, "Well, the good news is you don't have syphilis, but the bad news is you're HIV positive, and you have about seven years to live."
And that's how I was told. And my children were five and seven at the time, so you can imagine what that was like hearing that news at that time.
Jeff Galvin: Unbelievable. Seven years to live, and the first thought you have is that your 14-year-old and your 12-year-old are gonna be motherless. I mean, that's just incredible. What year was it when you received this?
Susan Cole: This was 1999.
Jeff Galvin: Wow. And then they told you you had seven years to live? That's very unusual.
Susan Cole: Yeah, they said obviously.
Jeff Galvin: That's great. They were totally wrong.
Susan Cole: Yeah, absolutely. And I think that for me, my way of coping was to get as much information as I possibly could. And even though I was living in the States at the time, but I actually got information from NAM Aidsmap, the HIV information charity where I work today. So I've kind of gone full circle.
And I realized that actually the doctor was wrong, that I could expect to live pretty much as, I didn't know it would be as good as it is now back then, but, you know, now I know that I can expect to live as long as everyone else, that HIV is not a death sentence, and also HIV has not been a barrier to me living a really full and happy life.
And I've actually gone on to have two more children, both of whom are born free of HIV. So I've got three ex-husbands and four kids.
Jeff Galvin: Well, that's a very interesting part of the story right there, okay, because I think a lot of people are worried when they get an HIV diagnosis that that means that they can't have children, but that's also not true. Can you explain a little bit about what are the considerations if you are having a child and you're HIV positive?
Susan Cole: Yeah, absolutely. I mean, we're really fortunate, well I'm really fortunate that I live in a country where I have access to treatment, because we have to remember that even though HIV is not a death sentence, there are still so many people around the world who continue to die from AIDS because they don't have access to treatment, and there still are so many babies who are contracting HIV because their mothers don't have treatment.
And I was really lucky in that I was already on treatment which lowered my viral load to a level where it made it just the tiny tiniest possibility of transmitting HIV to my babies, and yeah, they were both born HIV negative. And also, another piece of information I think lots of people don't realize is that when people are on an effective treatment, it's impossible for us to pass the virus on to our sexual partners. We call that U=U, and undetectable equals untransmittable. And I think that's another really important message that we need to get across very widely.
Jeff Galvin: Wow, I mean there's so many ways we can go on this because you're bringing up so many questions for me. But let's stick on that one for a second. There's a lot of misunderstanding about HIV in the world, right? And it also seems that it's not just misunderstanding, it's lack of understanding.
To me, HIV just hasn't been in the news that much. Hollywood's not making movies anymore, and so as a result, we have an uneducated public, and maybe an unempathetic public, or maybe even just a public that thinks that somehow HIV has gone away, it's no longer a consideration. I mean, some of them may be sitting in doctor's offices right now having that shock that you had because you hadn't been thinking that there was some possibility you could be HIV positive.
But in the United States, for instance, 50,000 new cases per year, that's epidemic levels. Polio was only 60,000 at its peak per year. So it's still there, but we are unaware, and so that to me is a very interesting aspect of this.
Jeff Galvin: So what is the reality for folks that are HIV positive and that are well-controlled on antiretroviral? What is life like?
Susan Cole: Yeah, I mean for many of us life is fine, but we have to remember that there's so much more than simply having controlled HIV. Stigma continues to play a devastating role in the lives of people living with HIV, and it's across society. It's on an individual level where individuals are stigmatizing. Many people with HIV experience self-stigma in terms of what perhaps they knew about HIV beforehand and feel quite badly by themselves.
But also, there continues to be a tremendous amount of stigma and discrimination on state levels. So many countries have stigmatizing discriminatory laws that impact the people, the key populations who are most likely to be affected by HIV. So many countries have homophobic laws. There are laws in relation to sex workers, trans people, people who inject drugs. So many of these laws are stopping many people from actually accessing treatment, accessing testing.
And until we are able to address those laws, we're not going to be able to end AIDS and end HIV. And very recently, last year, UNAIDS had a meeting in relation to coming up with what we're going to be doing over the next five years. And for the first time, it didn't pass by consensus, because some countries refused to include laws in relation to homophobia and things like that.
So we still have a long way to go on both a societal level and a government level.
Jeff Galvin: That's fascinating. So what you're saying is it's not just the burdens of folks that are HIV positive, but vulnerable groups that are associated with a high risk of HIV are also facing stigma and prejudice, and even prejudicial laws in the countries where they live.
You don't see a lot of that here where I live in a very liberal area of the United States in the suburbs of DC, but I do understand that there's a lot of variability across the United States in terms of the stigmatization. You're a living example that this is not a gay disease. You're on your third husband, or you're over your third husband, and this is everyone's disease. This is one of the things that I think everybody needs to understand, and also to just be aware that a treatment is not a cure.
Seems to me that one of the key things to do to get rid of this stigma would be to actually be able to cure HIV persons so that when somebody gets the disease, it's like COVID, right? Once they're over COVID, they're not contagious anymore, and nobody treats them any differently.
But I think that this idea that there's still some viral reservoir that if somebody didn't take their meds every day, could they become contagious? Is that thing so scary to people that are uneducated in HIV?
Even the very few people that I meet even know this idea of U equals U. Hmm, isn't that amazing? And it's been known for quite a while, but you know, first of all, the person sitting next to you on the plane can be HIV positive and uncontrolled, and you still can't get it.
Susan Cole: Absolutely.
Jeff Galvin: This is not a casual thing that can be passed. You have to be really intimate with that person, sharing a needle or having intimate relations with that person to pass it, even if they are contagious.
But if they're well-controlled, they're just not contagious at all. Your partner could be HIV positive, well-controlled, and zero danger to you.
Jeff Galvin: Given that you're heterosexual and a woman, is there something different about being HIV positive from that perspective? How does that impact your life in your day-to-day existence?
Susan Cole: Fortunately, yeah, I'm very conscious of my privilege that it hasn't been that much of a problem for me, and also, I'm very much aware of my rights, and I'm very happy to speak up.
But for so many women living with HIV, we face intersecting forms of stigma and discrimination and disadvantage, and one area where women with HIV are disproportionately affected is gender-based violence. Women with HIV are significantly more likely to be victims of domestic abuse, and also, women who are victims of domestic abuse are more likely to acquire HIV, and very often, for so many of the women that I speak with, it’s the stigma that plays a role in that.
I often hear men say to women, "You know, you're so lucky that I'm staying with you because you've got HIV and no other man is going to want you." Many women stay with partners because they're threatened that if they leave them, their partner is going to disclose their HIV status to other people. So that can play an awful role in the lives of many women with HIV.
Jeff Galvin: This self-stigmatization could be almost like a self-esteem problem in terms of relationships, right? And it's not just women, I'm talking about anybody. Their feelings about themselves have a huge impact on how they go out and pursue happiness.
Susan Cole: Absolutely. And I think it's really important that you raise the issue of happiness because for so many people, there just isn't that kind of discussion about quality of life. It's more about just taking your pills, being undetectable, and many people don't feel that we're deserving of love or happiness or having a fulfilling life. And we just need to shift the narrative away from that. And I do think self-esteem and self-stigma can play a harrowing role on the impact of people, but ultimately, stigma from others, stigma from society, can just be even more devastating.
Jeff Galvin: Yeah, absolutely. So, you know, how do you divide up the stigma? What are the drivers of this? I just remember back to in the '80s when HIV became sort of known, and I was in college. And, of course, this is the time when people are experimenting with relationships and stuff like that. And it threw a pall over the whole thing. It was just this sort of scary, scary, unknown, mysterious concept that, you know, just... I don't know. It was, you know, always in the back of your mind.
But to me, that fear factor was the thing. Right? If you were to find out that somebody was HIV positive, and at that time we didn't even know how it traveled between people. And I think a lot of people that society was sort of dividing up between, "Oh, that's just a gay disease. We don't have to worry about it."
Susan Cole: Yes.
Jeff Galvin: And people that realize that, you know, viruses aren't really that selective in terms of who they move around to. So, they start off in the gay population for one reason or another. You know, Patient Zero may have been gay, okay, but it's going to go everywhere, right?
Something that we still don't realize as a society. You know, as we started to think about COVID, there's a lot of people that think you can just intellectually dominate the virus, like it doesn't move around if you have the right attitude about things, right? And so, there is this desire to protect oneself by just burying one's head in the sand, right?
Susan Cole: Yes.
Jeff Galvin: So, does that still exist? I mean, is the public sort of that naive about HIV that maybe some of them still even think it's a gay disease? Or just some people think that if you have the right attitude, you can avoid it, or it's just not for you, or you're somehow immune to it. What is, you know, or or you just have to reject anybody that is associated with it at all? Don't even talk about it, you know, you're just gonna bring it on yourself. I mean, like, what level is that fear and superstition out there?
Susan Cole: I think it still exists. I think that there still is a great deal of misunderstanding around HIV, and I think that that often drives the stigma. I don't think it's necessarily that the people who are stigmatizing are bad people. I think it's coming from a lack of knowledge and information, and often when you don't understand something, you're afraid.
So, I think you know, one of the most important things that we can do to combat stigma is to get the message out about the reality of HIV, so people aren't afraid.
But also, to get back to women with HIV, I think it's also really important to mention that we are not passive voiceless victims. Women with HIV, we need to be at the heart of every decision about our treatment and our care and research. I think that's one of the issues where women need to be much more involved, the research around HIV.
So, that's something that I'm highlighting to you with the work that you're going to be doing, because often we hear about side effects as an issue that affects so many people in relation to treatment, but I think often it's a case that there hasn't been enough involvement of women in clinical trials. So, when we do see some side effects and one thing that people talk to me a lot about is weight gain, and so many women were saying to me when they were moved on to integrase inhibitors that they were putting on a lot of weight, and they were going and saying this to their doctors, and their doctors was like, well, you know, it doesn't seem that bad, it must be you, it must be the menopause, it must be something else. But it was only later when there was more research that we found that certain drugs, the weight gain was significantly worse for women, and significantly worse particularly for women of color.
So, I think it's really important, and this is like a message to you as well, is that when you get people involved in your clinical trials, that you are meaningfully involving women and people of color at all stages of your research.
Jeff Galvin: Yeah, so, I'm not allowed to know too many things about our participants, but I do know that we are diverse, and maybe overrepresented in persons of color because in this area, unfortunately, well, actually, I think a lot of people don't understand that even though in the United States, blacks are only around 14% of the population, they bear 42% of the HIV burden. I mean, that's just ridiculous.
So, you're, you know, in this area, 50% of the people that are HIV positive are also people of color. Crazy, crazy. And there's a lot of other, you know, sort of stigmas and prejudices and things like that that lead to that issue right? This is a whole, you know, sort of global issue about the availability of healthcare and the trust issues between different cultures, and a long history of problems with equality in the United States which is driving people away from treatment.
They're suffering the same problem that persons of color suffered more of the burden of COVID, right? Because sometimes they were slower to go ahead and believe and trust people that hadn't been trustworthy in the past for them. So you can't blame them, but at the same time, yes, this is really an issue that needs to be highlighted.
But let me tell you, you know, we're happy to have you as an activist and involved in AGT, and the good news is, right now in the clinical trial, we're five for five with no serious adverse events. So, it doesn't look like there's any side effects of this, and theoretically, there shouldn't be because all we're doing is making a small adjustment in the immune system so that HIV cannot infect the cells that are supposed to be killing HIV. And that just sort of turns the equation around where the body naturally can control HIV or rid itself of HIV, like you rid yourself of a cold. Your cold viruses don't manage to infect cold T-cells, and that's why your cold T-cells are so good at clearing colds. Well, HIV is the same way, it's just the problem is most people don't have T-cells that are immune to HIV. We can change that.
Jeff Galvin: So, hopefully, we can get rid of some, some of the side effects of being HIV positive, maybe all the side effects, and maybe even the stigma. But what's it like right now in terms of side effects? Like, what are typical things that people have to deal with who are on HIV treatment?
Susan Cole: Fortunately, we've come a long way from the start of when we had treatment, and it was literally like a handful of pills that people had to take very often. Now, many people are taking just one pill once a day, but that doesn't mean that people aren't experiencing side effects.
For many people, it's fine, but you know, one thing I mentioned is weight gain. That's something that's affecting people a lot, and with weight gain, it's not just a matter of self-esteem and putting on weight, it's the other issues that come with that in terms of someone's cardiovascular risk and things like that.
Many people with HIV experience comorbidities, and it's really hard sometimes to know whether it's HIV itself that's making us more likely to have other issues, is it the medications that we've been on for many years? So, it can be really difficult.
And for some people, just the daily reminder of taking a tablet every day can be problematic for them as well. And another issue for some people is that because of stigma around HIV, people in their household may not know that they're living with HIV. So, I know of some people who hide their medications away or you know, may not be as adherent because of the issues of taking daily tablets.
So, those are areas where a cure would be tremendous for many people. But I just think it's so important that when there is a cure, and I have incredible faith in what you're doing, is that this isn't something that is just going to benefit the rich.
Jeff Galvin: Yeah, so, that's a whole other discussion about that, but I actually believe that this is very much like computer technology where, yeah, at first, you know, when mainframe computers came out, they were only for the rich, but it's a technology that gets better and better every year and cheaper and smaller and so you know that's computer technology but I'm seeing the exact same trend in the 15 years that I've been in gene and cell therapy.
This thing doubles or 4x's in power every year, and it halves or one quarters in cost. So, in that sort of environment, if you can dream it, you can do it and you can bring it out to a very wide audience. Keep the faith on that one issue. I'm a big believer in the competitiveness of gene and cell therapy and the basic technology curve that I've experienced in so many other industries to bring this to everyone ultimately. It may take a little bit of time in the same way that it took a little bit of time for computers to get into the pockets of people in Africa. It may take a little bit of time for the HIV cure to get into their arms, but it'll happen.
I love the fact that you still have empathy. You call yourself privileged. A lot of people that have tiny little problems see themselves as victims or are totally focused on their own grievances and self-pity. It is important for all of us to have empathy for one another. You're sitting here, somebody that I would ask everybody that's watching this to have a level of empathy for your journey.
Jeff Galvin: This is one of the reasons I wanted to talk to you. I wanted to hear what it was like to get that diagnosis. I wanted to hear one of the things that you just said about taking that pill every day is a reminder. What does that do to people? I mean, you seem to be handling it so well, and you're in a community that understands HIV. You are, in some ways, in a privileged position just because of the folks that are around you.
But you alluded to the fact that there are people taking these pills that haven't shared it with the remainder of their household that they're on those pills. Can you imagine having to hide that? This is just crazy. Tell me about that. Hopefully, it doesn't apply to you.
Susan Cole: No, I've never had any issues in terms of my adherence. One area where there was a problem was when I was pregnant with my son, who's now just turned 17. A fantastic, moody teenager but a great boy. When I was pregnant, I actually did a Demi Moore-type of naked cover of a magazine to show that women with HIV can have children who were born free of HIV.
What was incredible at the time was that I got a message from a woman who said that her doctor had been telling her to have a termination because she had HIV and she would likely pass it on to her baby. When she saw that article, it changed her mind.
Jeff Galvin: You saved a life, right? A baby has been born, and in a 99.999% chance, HIV-free as well. This is what they misunderstood.
Susan Cole: Absolutely. Her child was HIV-free, but during my pregnancy, I was taking my medication absolutely perfectly because it was so important for me that I wouldn’t pass on HIV to my baby, but then I think it was around 34 weeks that suddenly my viral load started to go up a little bit and I was accused of, like, is it that I’m not taking my medication, and I was like “No, absolutely not”, but it was because at that time they weren’t monitoring the drug levels in my blood.
Fortunately, my son was born by C-section, and he was HIV negative. But I think it's incredibly important that doctors listen to and believe their patients when they're telling them things because I think that's just one of the most frustrating things. That's one of the issues that I'm hearing from women about side effects. They're going to their doctors, they're saying, "I'm having the side effects from my medication, I want to think about switching to something else," and often, they're not believed, or they're dismissed.
And very often, black women, in particular, I'm hearing are experiencing that. And I think that there's so much systemic racism still today in healthcare settings that is impacting particularly on women of color.
Jeff Galvin: How do we end that? I mean, what are the things you, you know, I know this is, you know, a one week long conference to even discuss this surface level of it, but are there a few highlights about what can we do as people that have at least some awareness of HIV and even some of these inequities?
Because I've heard the exact same stories that you're talking about is that the people that get the worst experience at the doctors are black women, right? For some reason, if they complain, they're looked at as complainers, as opposed to reporters of accurate information of what's going on in their body. I think that's just a blatant, you know, I can only think that this is just a blatant prejudice. I don't like to think of prejudiced people as evil. I think of them really as naive or ignorant or, you know, and there are people that are genuinely, you know, have an intent, you know, a prejudiced intent.
But I saw your eyes go because I think I have a very unusual perspective on this that isn't really mainstream, and maybe not even acceptable and maybe just wrong, and please go ahead and feel free to tell me that. But I think that if you look back in human history, like way, way back, the tribalism was part of survival, and we may have literally, you know, put it into our genes that we, you know, we are immediately scared of the unfamiliar, right? And I've seen experiments where they take a white mouse and a black and white mouse, which they understand that they're not from the same family, and they can do experiments that show that they don't get along. But if they force them to live together and get to know that they're not a threat to one another, they become friends, right? Yeah, but you see, there's an initial resistance, and it turns out it's equal on both sides.
Susan Cole: Surprised to know, Jeff, that I actually agree with you, and my academic focus was about the cognitive processing in discrimination, and so much of it does come about in terms of human nature and how, in terms of societies, how we want to "other" others in that respect, and lots of it comes about from fear. But I think information and knowledge and understanding is one of the most important things that we can do.
But at the same time that we, it's so important that we crack down with the law on, that we have laws that stop discrimination and that people are experiencing. So we need to hit it from all different levels.
Jeff Galvin: What do you think about the concept of acclimation as well, like in, for instance, Singapore, when it was ruled by a king? It was a benevolent king, and I should know his name and everything because I use this example a lot. Basically, what he said is, "Look, we're a multicultural society, and so you know we need to get used to one another." He was sensitive to the idea that people would be naturally mistrustful of one another coming from whether they were Indonesian, Chinese, Japanese, African, whatever. Everybody was living in Singapore, so he passed a law.
And of course, as a king, passing a law is just you sign it. There's no process for that. But he said every living space, every building that is built for housing must have a basic adherence to the percentage of each one of those cultures and backgrounds and ethnicities within it. So if Singapore was 20% black and 40% Chinese and 30% Indonesian or whatever, I don't know whether I just there's 10 left over somewhere else, right? I'm doing the math. That's the way the building was too. And that makes total sense to me.
The first day that you're riding the elevator with somebody that doesn't look like you, you might not talk to them. The second day you might say hi. The third day you might go, "How's it going?" The fourth day you might actually be having a conversation, and you'd be like the mice in this study that I saw that were forced to live together, and they realized that person is no threat to me, and now I can get under that the skin and start looking at and pass the all of our differences even whether it's gender differences or all sorts of things like that. And come to the realization that I know, as an amateur geneticist, that the difference between you and me is .0001. It's all just a little bit of gene expression. Like you and I, given the same experiences, will grow up exactly the same way. That such a huge amount of what we become is how we're treated and what sort of our arc through life and what chance brings us right now. All that stuff is so important. So, you know, that's to me like acclimation.
I look at my own background, and I just grew up in a very liberal suburb of Boston, and so I was exposed to everyone, right? Asians, Blacks, you know, all different religions and things like that. And, as a result, I just lucked out, right? At first, I wasn't aware, and now I'm the opposite. I'm very aware because I look around and I say, "It's not okay to just say, 'Well, I'm color-blind. I don't see color.'" No, you have to see color because you have to recognize the special considerations or the impact that that has on the person that you're seeing.
It doesn't matter if you don't see it. You’ve got to remember that everybody else does or most people do, and that that is affecting this person's life. And that actually will be reflected in your relationship with them, right? Because when you come on - I'm white, you know, I'm about as white as they come, and when somebody sees me coming towards them, right, they will have some expectations based on how every other white person before me treated them. And so how whites see Blacks, Blacks see whites, you know, all these different cultures mix impacts all of us, and we need to be aware of it and we need to you know accommodate it in a way, like even in this HIV situation.
Susan Cole: I agree with you absolutely. That's um, in relation to that.
Jeff Galvin: Well, I gotta say I'm touched. Yeah, I mean it's just my own personal views, but you know, I think about this stuff and I'm meeting all these folks that are telling me a lot of stories about their fear of being open about their status. Even heterosexual men that I talk to are like, "Well, everybody's gonna think I'm gay."
Susan Cole: Yes.
Jeff Galvin: You know, well that's crazy, right? But that's the level of misunderstanding that's out there. So, you know, in your daily life, like what are the things that your organization is doing in order to do this educational mission that you're talking about?
Susan Cole: Sure, yeah absolutely. So, I work for the HIV information charity NAM Aidsmap, and we've been around pretty much since the very start of the HIV pandemic. And as I mentioned to you, it was like through NAM that I got information in relation to life expectancy.
One thing that we're doing now, and I think is incredibly important, is to recognize that with HIV information, not everyone wants to get that information in the same way. So, you know, we had lots of booklets and we have a website but not everyone wants that. So, the area where I'm leading on is actually getting the information out to wide communities in ways that they want it.
So, I've been hosting and producing live broadcasts on HIV where I have guests from all around the world. So, I have doctors in the USA, I have professors in Asia, I have people from all walks of lives living with HIV. And it's been absolutely incredible in terms of people sharing their experiences and getting those messages across in accessible ways, but also ensuring that we're getting accurate and reliable information out to people and it's been tremendous.
I also co-host a series called Aidsmap Chat with my colleague Matthew Hudson, who is a gay man. And, you know, between us, we have our guests on and we both learned so much through having guests from all around the world. So, we're getting information out there but also learning as well. And since we've been doing the broadcasts over the last two years, we've had over a million views. So yeah, it's going, it's going pretty well.
Jeff Galvin: That is fantastic. I mean, we shouldn't even have this series, which is everybody go to NAM Aidsmap and go see your series because that's exactly, you know, this is a big part of what I wanted to accomplish with this is I wanted to have some information out there that would educate the broader public in terms of what everybody's experience is with this, what the realities are of HIV, both the positive and the negative. I really would like it if people could understand that people with HIV are of no danger to you, so just forget it, okay? Just treat them like normal people and care for them the same way that you should care for everybody in your life.
The other aspect of it would just be to go out to the general public and explain to them what is there to support them either from a medical standpoint or from a psychological standpoint or any of these things so that folks that may be missing out on the opportunity for treatment or for a better life or the opportunity to pursue their happiness could come in contact with that information.
It sounds like, please tell us, where can we go? Is there a particular URL that folks can go to and listen to those broadcasts?
Susan Cole: Absolutely. So if you go to aidsmap.com, that's our website and we're going to be having broadcasts across this year, so talking about different issues. So we're going to be covering, got one covering the AIDS conference that's in Canada this year and also discussing different aspects like aging with HIV. That's something that, you know, for people, like I'm 53 and I never imagined that I would get to this age, but you know we'll be discussing things like the menopause and HIV and yet how HIV and aging is affecting women.
So we're going to be covering all different aspects in terms of discussions and between individuals and also like video content as well in terms of different aspects of HIV. So go to our website and check it out.
Jeff Galvin: Yeah, for certain. That sounds like a really great series. I'm going to tune into that myself.
Susan Cole: I'd love to have you on and have a chat.
Jeff Galvin: I would love to be there. I don't know, you know, I think I have an interesting perspective in terms of the arc of the HIV cure. I'd love to talk about that with your audience in so much as you find it relevant. But, you know, I'm really just in a position where I'm trying to learn more and more about the experience of the people that we set out to help.
Our mission was just to relieve suffering and relieve death from serious human disease because we had this powerful new technology called gene and cell therapy where we can reprogram your DNA, the root drivers of everything in your body. And I realized when I came in contact with this is that it was going to revolutionize pharmaceuticals. So we have a very simple mission and then HIV, almost through serendipity in a way, like just just lucky circumstance, became the lead program of our lead programs.
And then now we're in the clinic with a tremendous momentum and a lot of indicators that we may have something that can functionally cure HIV patients, in other words, that they would do a one-and-done therapy and then live a normal life because they could never infect anybody, they could never get AIDS, and they would never need to take any special medication. So they're off their antiretrovirals, and then the bonus is since they're now naturally immune to HIV, they can't be reinfected.
I mean, that would be sweet, right? And I know this is the dream come true for many, many people, and I try to talk to them and find out about their experiences, but you know, I'm just learning. You know, that's why it's been so fascinating to talk to you.
Jeff Galvin: Do you have any, like, sort of last things that you'd like to tell the audience? I mean, maybe some general wisdom that you've picked up from all of these educational sessions you've had and all these conversations with folks that are living with HIV or who are advocates or activists in this area and understand it, doctors, whatever, you know, some general wisdom about how to look at HIV, how to better understand people living with HIV, and to normalize our relations?
Susan Cole: Yeah, absolutely. I think just some of the most important facts to get across are that HIV has changed from what people may think they knew about HIV.
For people on effective treatment, it's impossible for us to pass HIV onto our sexual partners. Women with HIV can have children born free of HIV. HIV does not stop people living a full life and doing any job that we want to do.
However, stigma continues to blight the lives of people living with HIV, and until we address stigma, we're not going to be able to address the problem.
But most of all, I think it's incredibly important to understand that inequalities continue to drive the HIV pandemic. So even though we've had these tremendous advances, there are still people today dying from AIDS, and until we stop inequalities, we are not going to be able to end AIDS and end the HIV pandemic.
Jeff Galvin: That is a really great way to close this thing, and nobody could be a better example of exactly what you just said, that you can have a full life filled with everything that you'd ever hoped for, even living with HIV. And I love your energy, and nobody is going to believe you're 53, by the way. So that's just great, and you've been smiling through this whole interview and feeling privileged, and I think that's an amazing example for people living with HIV and for people that aren't living with HIV alike.
It's to understand that you can have gratitude for the good things in our life, and to have faith and hope and keep driving forward in order to bring all those good things into our life.
And then you're yet an incredible example of empathy for others as well, that here you are living this great life, and still you're deeply concerned about people that don't have that opportunity. And that, to me, is the biggest lesson of all. We're all human, and we all need to love one another, we all need to empathize with one another, we all need to care for one another, and that's what's unique about humankind, that when we work together, when we collaborate, when we communicate, when we learn from one another, we can lift each other up. It costs us nothing, we all rise together, we all get happier together, we all get richer lives together. That is why we dominate this planet, and why we're not being chased around sub-Saharan Africa by giant animals anymore. It's because we learn to work together. Let's not forget that.
And wow, thank you for talking to me today, and it's just been fascinating. I hope we'll do this again soon.
Susan Cole: Absolutely, and thank you so much for having me on. It's been a joy chatting with you.
Jeff Galvin: My pleasure, all right, take care.