Jeff Galvin: Yeah, it’s really our pleasure. You’ve got an amazing background relating to HIV. First of all, it’s remarkable that you could be diagnosed in 1982 and go 20 years without an effective treatment and to be here talking to me today. That seems miraculous to me, quite frankly. What, what do you, you know, how did you do it? You know, what was it that got you through all those years when so many people who contracted HIV were not able to survive?

Orbit Clanton: Well, I can't give a scientific answer to that, other than I just didn't believe in the beginning that I had GRID, or the unknown at the time, because back in 1982, the mid-'80s, individuals were succumbing to an unknown disease, which we now know is HIV. But I said to myself, in my mind, that no, I am not going to let this disease take me out. So the power of my faith, the power of the mind.

I asked providers and scientists, and they said, "Well, you were one of the slow progressives, so that's the best explanation I can give." I'm happy that I'm still here.

Jeff Galvin: We are too. That's interesting. So slow progressor, that is actually a known type of condition that seems to be genetic. Occasionally a person comes along who can control the levels of their viremia naturally, and it seems to be a rare thing. 

And maybe that, you know, I guess when you look at some of the stats from the '80s, where about 95% of all people that contracted HIV perished with AIDS, but that meant, you know, one in 20 survived it. And, you know, part of it might have been, you know, you were gifted with slightly different genetics that helped your immune system to persist through the attack. 

Actually, that's at the root of that whole idea of what are called slow progressors or non-progressors, is at the core of something that we're trying to develop right now, to modify people's immune system to get that benefit, so that they might be able to live with HIV but free of any treatment, right? Suppressed but not having to take drugs to suppress it. And maybe you were somebody who actually had that naturally, so that's really interesting.

Orbit Clanton: So you've really seen the whole arc of this history, everything, the treatment paradigms, everything, you know, what have you seen in terms of progress forward on HIV and even the stigma surrounding HIV that people are experiencing in this environment?

Orbit Clanton: Well, the progression from GRID (which I never used that term nor did I accept that term), that whole analysis that it's a gay disease, which all of us now in science know is not true. And when you look at the global number of individuals living with AIDS or HIV, I should say, more individuals who are of the heterosexual persuasion have HIV versus quote-unquote the gay population. 

But what that really did create is the ongoing stigma surrounding HIV to this day. And part of what I am doing along with others is we're trying to re-educate and make the norm of reducing and eliminating stigmatizing language when it comes to individuals who are diagnosed with HIV.

I've also noticed, and it's a good thing, that when you mention HIV, there once was a time that people wouldn't even mention it. I remember when individuals were dying from HIV/AIDS, that families, because of worship, wouldn't acknowledge it. They'd rather say that, "Oh my brother, my uncle, or my family member passed away from cancer." 

I mean, think about that. They would rather say that this person died of cancer than to say, "They passed away from HIV/AIDS." 

Now with the advancement of antiretrovirals, that phrase that HIV is no longer a death sentence is true, even though that in itself is still stigmatizing when you say things like that. But I'm just pleased that we are at the point. Think about it, we're at the point of talking about cures. That word was never used, and when it would be used back in the day, you would be told, "Listen, don't even think about that. Let's just try to come up with some type of therapy to keep people alive." So that's one place where we are that I'm very happy about.

Jeff Galvin: It seems like what you're saying is that you've seen progress over time, yet you know the, I think you acknowledge that there's still a level of stigma associated with this and there's more that can be done. How can people embrace this idea, right? I mean, ideas are powerful, that we want to eliminate the stigma of HIV. How can they embrace that idea and how can they become part of the movement to reduce the stigma? 

Orbit Clanton: Well, having platforms like this. I always hope and would like to see more individuals who are living with HIV come forward, but I do respect where a person is at when they talk about telling the whole world, because despite the progress that has been made, being HIV can have dire consequences depending on where you live at, both here domestically and especially globally. 

But with that said, if there was a greater visibility of individuals who are living with HIV, doing well, having a good quality of life, from all walks of life, I think that would really help with destigmatizing the disease itself. 

So, you can always, when you're just having conversations with individuals, first of all, I always say that everyone should know their status, and we have awareness days here in this country for a purpose. And those awareness days are just what it says, awareness. Like at Thanksgiving, when you're sitting around the table, maybe you're with your family that you haven't seen, or Christmas time when we're gathering, bring up the question, "Oh, by the way, how are you doing?" You talk about your health and this and that, ask the question, "Well, do you know your HIV status, or when was the last time you took an HIV test?" 

The response may be, "Why are you asking me that? I'm not doing anything that would warrant it." But then you give them a quick education and say, "Listen, first of all, you're right." They'll probably say, "Well, I'm not gay." 

Jeff Galvin: That's so funny, I was just thinking that. That's why I was laughing, right? You see they could fall right into the stigma right at that moment, right? But I think you're right, the openness is a great idea.

Orbit Clanton: When we look at the information that was delivered to us during the pandemic, learning about SARS-CoV-2 across this country and globally, they educated people. I think it would be helpful if the government, and trust me, I've suggested this many times, quick PSAs across the country that are short and to the point to educate individuals about the science and the facts of HIV, specifically that it is not a gay disease, and anyone can be at risk. I think that would really help with getting people to understand because as they say, "Oh, they have that 'aha' moment. Really, it's not a gay disease." 

Jeff Galvin: Because it's a virus and if you know your status, you can take a daily pill that would make you basically normal. You would have a relatively normal life expectancy. You would not be contagious, you could never progress to AIDS, and you would minimize the effect of that disease. So, you know that question that you're saying is like it is so important, and it reminds me a little bit of Harvey Milk's strategy for actually reducing the stigma surrounding gay and lesbians. What he said is, "They don't realize that we're among them, and that we're not monsters. So, introduce yourself. I'm living with you, you know, go out and tell your family that you're living with HIV, and they'll realize, okay, you'll start a tiny little club of people that don't fall into that stigma anymore because you'll have a chance to explain." 

So, I think your idea is a really good one, but I also see how difficult it would be for people. And so, I didn't know anybody who would admit that they were HIV positive before I got into the HIV cure business. Now, everybody does with me, so I know so many people, straight and gay, that have HIV. I hear so many stories.

But I think that it does take a certain tremendous level of bravery to be, especially amongst the first, to go ahead and implement that. So, I love that there are examples out there and we've got several of them on this series that talk about it and normalize it, right? Because this is something that should be normalized. 

Orbit Clanton: I do respect individuals who may want to but haven't reached that level of comfortability to do it. You know, I mean, I've been living with it so long and my attitude is I've heard it all. I've been insulted, I've been called names for overhearing things, but I'm at the point where I don't care about it.

In reality, I would say to those who are living with HIV, just take small steps if you have been disclosed. Find someone that you can trust that will support you. You don't have to do a grand announcement. Then again, another way, you could just go to your Facebook page, for instance, and put it out there and don't read the comments.

Jeff Galvin: Yeah. That's really interesting. So, are you taking an antiretroviral now, or are you just a slow progressor and you don't have to worry about it?

Orbit Clanton: No, I am on a one-a-day antiretroviral therapy, which I take every day. Sometimes people would say, "How can you take a pill every day?" Because I am 100% adherent. Again, my philosophy is that okay, I want to stay alive, take this pill. And by the way, I was someone that wasn't good at taking pills, but now I just do it one, two, three when I first get up in the morning and just go ahead and start my day. 

Jeff Galvin: One in four people in the United States is on antidepressants. They take a pill a day too, right? What's the big deal? They, you know, yeah. You're right. You've got to pick your life and commit to it, and if you decide that's good for you, okay. You know, it takes some self-discipline to remember stuff every day, and I'm not good at that. I like to, you know, everybody likes to just be free to do whatever's on their mind at any given moment, but that's not how life is, is it?

That's interesting. So, at some point, you had a hard time conforming to the regimen, but now you just, like, what, you just have a regular time during the day, you just pop the pill, and it's that simple? And is it not a big deal, and does it, you know, are you getting the positive effects and avoiding most of the negative effects?

Orbit Clanton: Well, I'm doing very well, and it's your state of mind. And I do understand that in the beginning, individuals may see taking ART as being burdensome, and they were. I mean, for those of you who may know, there was a time when antiretroviral therapy came out, the pill burden was extremely burdensome. It could be up to 36 pills within the course of a day, morning, afternoon, and evening, and it was debilitating. So now, with the advancements, I see it as this. We have a lot of things to worry about in life, you know, bills, taking care of our family, things like that. Here's something that you can do, you can choose to do or not do. You can sweat over it every day and become depressed about it or just say to yourself, "Okay. This will save my life. This keeps me going." 

And as we age, I'm sure many of you know, you start to develop other comorbidities, so you are taking other medication as well. But then there are those who are young, but they take multivitamins. I say, "You know, it's in your best interest, then just do it. Don't complicate it. Okay, take the pill and move on."

Jeff Galvin: So, you've been on antiretroviral since what, 2001? 

Orbit Clanton: Yeah.

Jeff Galvin: Okay. So, yeah, so you got 20 years without them and 20 years with them. I mean, that's remarkable, 40 years of HIV history. The only other person I know who's got that level of history is Marcus Conant, our CMO, which stands for Chief Medical Officer. So, he runs all of our clinical trials for our HIV developments, and he was a doctor and gay on the front lines of the epidemic in San Francisco in 1980. Okay, so he's even got a part in the movie "And the Band Played On". So, you see his name come up, yeah, yeah, which I recommend that movie to anybody because it's a great drama, and I also think that just in general, HIV and AIDS awareness leads to good things. 

Orbit Clanton: I'm meeting more and more people who are 28 to 30 plus years, even individuals who were born with HIV through vertical transmission are in their 30s.

Jeff Galvin: Four decades of HIV are already in the rearview mirror, but I think that you are a rare person who has seen it all through that whole thing and I find that fascinating. I hope you’re writing a book, but certainly this must come out in your advocacy and your activism and so forth. So tell me some of the things that you’re participating in that have meaning or value in your own mind that you’re trying to progress forward on. What sort of initiatives are you working on in the various different activities that you’re doing?

Orbit Clanton: Well, one, as I have mentioned, I am now working towards changing the language, removing stigmatizing language because that's a barrier to people seeking out HIV care or even knowing their status. And I have been invited to do presentations on that. For instance, one of the things I always say when you're having conversations, someone may use this phrase, "Oh yeah, I know Orbit, yeah, he's HIV infected for 40 years." Don't say that. 

If you're referring to an individual you know, people-first language, the proper way to do it or the non-stigmatizing phrase would be, "Oh, I know Orbit, yeah, he was diagnosed with HIV or he's HIV positive." Don't use infected because that one, it hurts when you hear it. It also makes an individual not want to know their status because if you're hanging with your friends and family and stigmatizing language is being used surrounding HIV and those living with HIV, then you say to yourself, "I, number one, don't want it, I don't want to know my status because now I'll fall into that category that my friends make jokes about," and some of the terms are really, really disrespectful.

One is in some of the urban places if someone passes, I've heard terms just out on the street. "Oh, John passed away." "Really? What happened?" "Well, he had the monster." Now imagine you don't know your status, but maybe you think you may have been exposed. Part of you then says to yourself, "I don't want to be classified and put into that group." So that's something that I am really championing towards. 

I always am on Capitol Hill whenever I get an opportunity, because we have to keep funding going. HIV isn't cured yet. So there have been times when I've been asked to speak to different appropriation committees to the question of why should we continue to fund HIV. 

Jeff Galvin: That question comes up in Congress? That's so bizarre to me. I can't believe it. 

Orbit Clanton: Well, think about it, the landscape. I'm there for a reason, but the answer I would like to give, and maybe one of these things I may just say, "Excuse me, I didn't get the memo. Was HIV cured?" 

Jeff Galvin: That's a good sarcastic way to put it, but I mean, don't they realize that there are HIV people that are living with HIV all around them, even amongst their staff? This is just crazy. There are 1.2 million people, and it's an epidemic still. You know, the new HIV infections can be up to 50,000 a year, and polio was only 60,000 at its peak. Right, this is serious business, and now that we have established that nobody is immune, right, and Congress, even Congress people, should be able to get that through their heads, right. All right, this is a national problem, and until it's completely controlled and completely within our control, it needs to be funded, even if it's just to improve HIV medications. The easier it is for people to take them and get them right, the more likely it is that they take them and get them, and remember you were talking about, like, I think we, you mentioned the idea of public service ads, you know, that educate on HIV. One of my favorite ones was U=U. Now, I know it only came out because probably drug companies realize, hey, we can sell more of this stuff. 

Orbit Clanton: You know where it came from? It came from individuals who were living with HIV. 

Jeff Galvin: Yeah, okay, but where did they get the money? Like, who funded that campaign? Because it was a great idea. 

Orbit Clanton: When HIV-positive people take ownership, because they were looking at the science and interpret that. But in the beginning, there was a pushback on governments like, "Do we really want to put that message out? Show us the data." Then the pharmaceuticals, listening to the HIV community, yeah, they stopped and realized like, "Oh, science does support that. Yes, we can fund and start, you know, mixing everybody with the information about it." 

So individuals who are living with HIV have, they're at the forefront of this, and I just wanted to mention, we are at a crossroads that I hope we see coming out of the pandemic. And when that question was asked about the rapid speed to which the vaccines were brought to market, the trials were set up, it was formulated, the infrastructure came from all the research that has been occurring within the HIV field. So I'm hoping that that message can get out there. And that people will really - it's kind of, how to put this - if all the efforts and research that HIV has or has been undertaken over all these years had not occurred, the availability to put into place and implement global trials as fast as we did, we wouldn't have been able to.

Jeff Galvin: Yeah, I completely agree with you on that. As a matter of fact, when I was in college back in the '80s and people were talking, as they do, about HIV and people were saying it's just a gay disease and, you know, we were discussing it from every, you know, as college kids do, they sit around and argue and debate. But one of the things that I felt was this is a really unique virus which makes it a unique opportunity that if we solve this virus, all sorts of coincidental things will fall out of the R&D path that will have benefit in so many areas. 

And you just brought up one of them that all the money that's gone into, I think there's been like 700 HIV vaccine trials now. Yeah, that's a whole network of people that can be used for COVID vaccines or any other vaccines that are being developed. It's a whole infrastructure, like you said, that came out of, you know, a sort of a collateral benefit out of HIV research even though an HIV vaccine hasn't emerged yet. But you know a lot of money has gone into that. 

But the other benefits that have come out is that cracking that virus and understanding how viruses that are integrating viruses like, that's the birth of gene and cell therapy which is now the cutting edge in medicine and promises, uh, or gives us hope for cures not just to HIV but to cancer, right?

Yeah, and it came from scientists, either curiosity or government funding and driving the R&D or whatever, but wherever it comes from, uh, however we get that supported has value to every single one of us. 

Orbit Clanton: That's why as we come out of this pandemic that like everything it just engulfed our entire world, meaning that's what's the main focus and everything else, all other diseases fell off the mainstream, even cancer.

But now we're at a crossroads and I hope that we see on it is it's time to put HIV back out there on the forefront, having individuals who are living with it come forward, sharing true science about how HIV is transmitted, and also educating the population about the role that HIV played in helping to take back society when it comes to COVID.

If we do that, I can see us moving forward on addressing many of the issues that we're talking about here, fighting stigmatizing language, and yes, I too want that day when you sit up and say, "Oh, how are you doing, Orbit?" "Oh, I'm good." "I haven't seen you in a while. What's been going on?" "Well, you know, I'm HIV positive." "Yeah, I know. Anyway, how you doing?" "I’ve been taking meds."

Jeff Galvin: It'd be like anything else. I think the better treatments we have and especially if we can find a cure, I mean, imagine the day where you, you know, people can go up to their friend and go "Yeah, I had HIV, but you know, I got cell therapy so you know, I'm fine now," right? You know, like, and people would be like, "Oh yeah, you're not just fine, I hear you can't even recontract it now because you're permanently immune for the rest of your life. You don't even have to, that monster, remember when you were saying the monster? You vanquished it forever, right?" And that would be a sweet story. 

I mean, that's one of the things that drives me in my business, is I would love to see people able to say that, you know, to just go like, "No, I'm not just, you know, cured of HIV, I'm literally moving to the next level where I can't even get it back. That, yeah, you know, you don't have to worry about me being a danger to you. It's like, you know, I left that so far behind that I don't even think about it anymore." That would be an amazing psychology for a formerly HIV infected individual who was taking antiretrovirals every day.

Orbit Clanton: HIV-diagnosed.

Jeff Galvin: I'm sorry, I missed that. What's that?

Orbit Clanton: HIV-diagnosed individual.

Jeff Galvin: Yes, thank you. Oh my gosh, I blew it. I just learned that on this thing, and then I shouldn't ask you to repeat it again, because maybe I could have got away with it, but now it is right in the spotlight. That's right. I learned, get rid of that word "infected," right? And I'll try to remember that.

Jeff Galvin: Is there some resource, uh, you know, since you're involved in this, what's the best way to find a little bit more information, maybe online, about how we can start to remove stigmatizing language from, uh, you know, even as you can see, uh, the CEO of an HIV cure company can easily, uh, make a mistake like this and perpetuate something that he really doesn't want to perpetuate, right? So, where can I go to help to make sure it doesn't come out in my language, it doesn't come out in our marketing materials, and where can other people go so that they can join that movement to get more information?

Orbit Clanton: Well, there are several publications. The World Health Organization has, if you Google "HIV stigmatizing language," I think it's like 87 pages of do's and don'ts, and I can share with your team the links. The UNAIDS has a publication out that it's really good, it's in the grid form for, you know, do's and don'ts, and some of the do's and don'ts are, again, this will become a cultural change because let's all be honest, at the height of HIV before antiretroviral therapies came along and people were dying, that was a critical need of us addressing. 

So we weren't really thinking about stigmatizing language of saying, "Oh, he's HIV infected." There was a term that you say, "Oh, he died of full-blown AIDS." There's no such thing as full-blown AIDS. AIDS is a by-product, a progression that if HIV is untreated, it can lead to that. But I'll share with your team the link because it's very interesting when you go through the do's and don'ts, you'll catch it and you're saying, "Oh, but I also work with the disability community," and if you notice, one term that we have now basically eliminated, you still hear people saying, is, "Oh, so-and-so is handicapped." We don't refer to people like that as being handicapped, because that's a negative. What do we say? That person is disabled, they have a disability.

So, if people are watching and saying, "Well, what's the big deal if I refer to somebody who is diagnosed with HIV as HIV-infected?" I would say to them, "Words are power, and it hurts individuals, even though you may not intentionally be trying to hurt your loved one or anything like that, and it's stemming out of what we're used to saying, but with education, we can help eliminate the stigmatizing language. Eliminating the stigmatizing language also reduces the barrier to individuals knowing their status and seeking care."

It's more than just not using the word, and as we spoke about it earlier, depending on where you live, when you hear people referring and using negative words about HIV, if you are positive, you don't want to be thrown into that group, so either you don't seek care, or it can cause you to have trouble with sharing with your family. 

All of this is really important to normalize HIV for what it is. It's a virus that can be controlled, and we're now looking through some of the research that you're doing with gene therapy and other forms of actually curing HIV, and there's a lot in the pipeline that I also think are long-acting.

You’ve asked about taking a pill every day. There’s research where you will be taking an injection. At this point we do have a FDA-approved for two months, but we’re looking, believe it or not, at outwards of six months, so think about it: you’re HIV positive, you go to your provider and get your therapy in January, and you don’t have to come back until July, and that in itself can be a great motivator for people knowing your status.

There are other things and methods of delivery that I’m excited about. A literal patch or how we deliver contraceptive methods with an implant. There are all things that once you understand and realize that HIV is a virus, and the person isn't bad, you reduce that shame in knowing and normalizing where, as you see when you go, "Oh, I'd like you to meet Orbit. Oh, by the way, he's HIV positive." "Oh, okay," and you move right on, not even a second thought about it.

Jeff Galvin: I'm very hopeful that we can get to that point. I think most people do not want to intentionally or unintentionally cause pain to others, but it takes some education to understand how to avoid certain words that may inadvertently be hurting those around you or even perpetuating something that hurts a group of people. 

I hear this a lot in every different type of difference. People don't want to be "othered," and you mentioned it also like you know, you compared it to your work with people that are impaired or disabled or that there are certain words that are very easy to adhere to and that make these people feel embraced as opposed to accidentally making them feel othered right and that you see it in two different communities.

What attracted you to working with people in that area? In particular, I mean there's every different type of HIV positive person, so you could have picked anything. What got your interest in that particular group or was it just coincidental?

Orbit Clanton: Back in 2004 at a conference or meeting here in New York, I met an individual who was legally blind and hard of hearing. His vision, when I say legally blind, his vision was 20 over 400. He could see if he put something close, but he had the most adorable guide dog. I came up because I'm an animal lover, and we started to speak, and he shared his story. He was HIV positive and he lost his hearing and his sight because of the virus. I was really captivated by this and asked him to explain it to me. That's when he explained that back then, it was a condition called CMV. This was a population that I started to look into. Are there people losing their senses because of HIV? It turns out that there was a population, yet no one at all was talking about it. So he and I said, "Well, find a need and fill it." Then there's a need to get the word out and educate. 

So we started a non-profit called Perception for People with Disabilities. We are 501c3 and boom, just started to put that on the table. It's taken off since then to educate.

Now, the good news is that because of the advancement of science and antiretrovirals, especially in this country, a person who contracts HIV, the likelihood that they would lose their sight or become hard of hearing is all but eliminated. Because as you may know, now when you test positive for HIV, the recommended guideline is to start therapy immediately regardless of your CD4 count. And for those who don't know, there was a time when they actually waited until your immune system became extremely weakened before they would start therapy. But we now know, again through science, that we start individuals immediately. So progressing to an optimistic infection or AIDS here in this country, and I say here; globally, we're also doing well, but I think we could do better. 

But that's how I wanted to help educate everyone about individuals who have disabilities, because again, I've learned not just with HIV, but until that situation touches you personally, you or your family members, we don't even think twice. 

Do you know something that's come from the disability community in all our major cities when you get to the curb? You see the indentation which able-bodied people use when they have their shopping carts or anything. It's so easy to get on and off the curb. That was created not for the general population. It was created for people with disabilities.

So you see, when we work together and learn about the different situations of human beings, all humanity benefits from it.

Jeff Galvin: Yeah, I absolutely agree with that. I just call it caring and empathy, right? You know, caring and empathy are a very special quality of humankind and human beings, and it allows us to collaborate in ways that benefit us all and lift us all up. And you provided some examples there.

The other thing that I was thinking when you were speaking about something that I did not realize either, that they used to recommend that you wait to take your antiretrovirals until you really needed them, you know, that was had some negative consequences, and what this means also is there's even more incentive to know your status, right? Because even if you are perfectly healthy, the earlier you start on that, the less likely you are to have any complications of the fact that HIV is present.

That's another theme that you spoke about earlier, you know, along with controlling your destiny, making decisions over your life, and moving forward towards what you pick out for yourself, and that is good information to have for folks that are willing and able and trying to do that.

Jeff Galvin: Anyway, this has been a fascinating talk. Is there anything else you'd like to add, you know, tell our audience about?

Orbit Clanton: I just would like to share if you are HIV positive, one, I hope that you are on a workable regimen. If you are HIV positive and you're not getting therapy, get in immediately. Secondly, I want to just say that for everybody, learn about HIV. Encourage individuals who are, you know, be supportive of, again, taking small steps to come out to a friend, come out to family members, and for some of you watching, saying it's not that easy, I'm not saying it's always easy, but there is support out there. 

Because the more we normalize HIV, and when I say by that, I'm referring to the simple fact that the science has proven that it is treatable, and we are looking, can you believe it, we are actually doing research now that falls under the umbrella of cure. That's amazing.

In my journey of HIV, we wouldn't even use the word cure years ago, because it just simply wasn't within the scope of immediate possibilities. But the good thing is, and I do believe that we will find the cure, and from the different types of research that's going on, and if you hear about some clinical trials related to HIV and cure, I encourage you, I deeply encourage you, join those studies, because you as one person can really be part of the puzzle that we will answer the question, and yes, one day, it'll be like, especially in future generations, yeah, I did hear about the disease, what, HIV? Yeah, oh, they cured that. 

Jeff Galvin: Yeah, thank you. Appreciate you joining us here today, Orbit, and again, thanks very much for your views and your input and your information. I hope we'll talk again sometime. 

Orbit Clanton: Thank you.