Elton John: Stigma Is The Biggest AIDS Battle

NEAL CONAN, HOST:

This is TALK OF THE NATION. I'm Neal Conan in Washington. In a new book, Elton John admits to the deep shame of staying on the sidelines as many of his friends and loved ones suffered and died from AIDS. Lost in selfishness and drugs, he would mourn, he would play a few songs at a benefit, but it would take many years before he confronted his addictions and realized he could do much, much more.

Given the enormity of the epidemic, though, where to start? Now the head of the Elton John AIDS Foundation, the rock star and activist is here in Washington to attend the International AIDS Conference, which is taking place a block away from us. Later in the program, another participant, Dr. Steven Deeks, who's exploring the possibilities of a cure.

But first we want to hear from AIDS activists, those of you with HIV/AIDS, and family members. What was your first step? Where do you begin to fight against AIDS? Our phone number is 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Elton John joins us here in Studio 3A. His new book is called "Love is the Cure," and welcome to TALK OF THE NATION.

ELTON JOHN: Thank you so much. Thank you.

CONAN: And I was surprised to read that once you got clean, back in 1990, you moved to Atlanta and volunteered to deliver meals to AIDS patients.

JOHN: Well, that was how things were back in 1990. We've come a long way in 22 years. When I first moved to Atlanta, I went on my first AIDS march, which was uplifting. And then I decided to volunteer and deliver meals to people who were terminally ill, basically, and who wouldn't open their doors, or we'd knock on the doors, and we'd leave the food outside, and then you'd walk down the path and you'd hear the door open and the food go inside the house.

People were suffering from enormous pain, and they had Kaposi's. They didn't want to be seen. It was like delivering meals to lepers, and in fact that situation really hasn't changed as far as the stigma goes. But back in those days, it was meals being delivered, it was medicine being delivered, it was transportation to hospital, it was buddy systems.

And when I first started the AIDS Foundation 20 years ago, that's what the Elton John AIDS Foundation was formed for, it was formed for direct care.

CONAN: Direct care. But just getting back to that individual, one-on-one opportunity, these were people, I'm sure one or two of them must have done a double-take when they saw you handing the meal through the door.

JOHN: (Laughing) Probably, yes.

CONAN: And nevertheless, your role was not just to deliver food but to deliver some sense of community, to say hello, I'm here.

JOHN: Yes, exactly, and to get my hands dirty. I mean, I hadn't gotten my hands dirty in the AIDS epidemic while I was a drug addict and an alcoholic. So how do you get involved? You volunteer and you do things at a grassroots level, and that's how I started. And it was shocking, it was inspiring, and it was very empowering.

CONAN: You then a bit later go on to create these foundations to deliver those kinds of services because - it was interesting, you were trying to look, as you describe in your book, for ways not to duplicate those things that were going on already.

JOHN: Exactly. I mean, we didn't want to get into prevention. We didn't want to get into education. We wanted to do what we thought was necessary at the time, and the most necessary thing was direct care and access to people and getting them what they wanted. And we were very, very naive. We didn't know anything about advocacy.

I started a foundation in America with a man called John Scott, and we relied heavily on the National AIDS Fund at that time. Raising money was not a problem because of my profile, but giving it away was an enormous problem because you didn't want to give it away to the wrong people.

CONAN: I understand, but let's go back a little. Raising money was no problem?

JOHN: Not for me. I could do concerts. And I did concerts for AIDS, and that was the only way we started by raising money, was for me to do concerts and donate the proceeds to the AIDS Foundation. That's how we started. And then eventually we had our Oscar foundation - Oscar party every year. But when we started, it was only me as the fundraiser. It was my name. I used to do concerts for the foundation, raise money, and that's how we started.

CONAN: And then the concern, though, and I think you're right, other people have said this, once you've got it, then how do you give it away A) usefully, make sure that nobody's wasting it or stealing it, and that it's not duplicating other efforts?

JOHN: Exactly. Well, my mantra is if you raise money, don't waste it. I've seen other, and I've been involved with other charities that have put on galas and events and that you wonder if they ever come out with any money at all at the end of it. So we've only had three people ever working at the foundation in America, at the most, and in Britain eight, and we pay our own way, and we don't pay any more than, in Britain, last year we only paid one percent overhead. So it's essential.

But to first of all give it away, you needed the expertise of people in the field, and that was the National AIDS Fund. And they showed us where, what communities and what projects were best suited to our money, and then John Scott, who ran the foundation, would visit the foundation. He would become friends with people within the whole AIDS advocacy world, and we'd begin to learn for ourselves where to give the money to.

CONAN: We're talking with Elton John. His new book is "Love Is the Cure: On Life, Loss and the End of AIDS." 800-989-8255. We want to hear from those of you who have the HIV virus, who have AIDS. We want to hear from those of you who are activists as well. What was your first step? Where do you start in the fight against AIDS? And let's begin with Sean(ph), and Sean is on the line with us from Fort Wayne in Indiana.

SEAN: Hi, how are you doing?

CONAN: Good, thanks.

JOHN: Hi, Sean.

SEAN: Hi. You know, I'm not an activist, but my comment really is, it really surprises me in today's day and age how people are still narrow-minded. And my father actually died of AIDS when I was in college, and you know, even today, when I talk to people, and I've heard people even make jokes, like that person's going to get AIDS or something like that, and I'll bring up my father died, you know, they kind of give me weird looks, or they feel uncomfortable how they should even talk to me. Or, you know, sometimes I feel like they wonder if, you know, well, your dad had AIDS, do you have AIDS? And it just - you know, and it makes me feel sometimes that - I still talk about it, but you know, I feel a little closed off even talking about it to people.

JOHN: That, Sean, is called stigma, and that's our biggest opponent in this battle against AIDS. We've come so far with the advancement of medical treatment, but we haven't really come much further than 31 years ago when AIDS first started with the stigma involved.

People still think of it as a shame-based disease, it's a sexually transmitted disease, and you're either gay or you're a prostitute or an intravenous drug user. And so a lot of people are still very bigoted about this disease, and it's our biggest opponent, trying to break these people down. It's such a treatable disease. It's so - the end is in sight for this disease, medically.

But if we don't go hand in hand with the stigma problem, along with the medical advancement, then we're never going to defeat it. So what you're saying is the basis of what I said in my speech on Monday. Until we get this opinion changed about AIDS, then we really are facing an uphill struggle. And I'm glad you brought it up because that is for me the biggest problem, as I say in my book and my speech, the stigma of it.

And the way we do that is to be more compassionate, more understanding, more loving towards each other. We have to change attitudes.

SEAN: I agree, thank you.

CONAN: Thanks very much for the call, Sean. It was astonishing to be reminded - I am old enough to have lived through the Ryan White story, to remember, yet to read in your book that when he and his family would go out to restaurants - this was, of course, the young boy who had hemophilia and acquired AIDS through a blood transfusion before the tests cleaned that up, but that they would throw out his plates in the restaurants as his family ate there, that there were so many protests of his going to school that people pulled their children out of school for fear of an AIDS patient then.

JOHN: It's astonishing, the amount of fear and ignorance. Even when the attorney general - or the surgeon general, sorry - of America said, you know, you cannot catch the disease from touching someone, sitting on a toilet seat or anything like that, it's impossible, people were still ignorant and fear-based, and it only took one person to say, oh, you know, I know someone who died of AIDS because they touched so-and-so, which was absolute nonsense.

But unfortunately there was panic. There was no medical advancement in sight. So people thought it was a plague, and it is a plague, and it's still going on. But in those days there was - you know, when someone fires a bullet through your house and puts a letter bomb through your letterbox, you know that you're in trouble.

And this boy, all he wanted to do was live a normal life. I think there were about God knows how many lawsuits that finally got him back to school. That's all he wanted to do. But the ignorance, and there's still a lot of ignorance around, that's the stigma part of it, when you look back, you think oh my God, you know, did this happen? Were people really like this? And they were.

CONAN: Let's go next to Jessica, Jessica with us from Kalamazoo.

JESSICA: Hi.

JOHN: Hi, Jessica, how are you?

JESSICA: Oh my goodness, I cannot believe that I am speaking to Elton John right now. I adore your music, sir, and I really, really appreciate your activism. I have a family member who I love very much who is HIV-positive, and I've not been able to, I guess, breach the subject with her. I believe that she knows that I'm aware, and I've been aware for a few years.

And you know, when I found out that she was positive, it really upset me, and I wrote research papers on it, and I really tried to talk to other people about the stigmatization. And I just realized recently that I've never spoken to her about it directly. And I guess my question is: Is there an eloquent way to go about discussing this with somebody, because it is so personal and so stigmatized?

JOHN: I think talking to her about it is the best thing you could possibly do. Without conversation, without one human being talking to another about something, I think she will be grateful. She might be a little embarrassed to start with, but she has no need to be embarrassed whatsoever, and if you talk to her on a friendly level and a concerned level and give her empathy, I think it will be an enormous relief for her.

You know, people are living with this disease and scared to say anything about it, and it's so ludicrous in this day and age, 31 years on, that we have treatments to treat it, and people lead normal, healthy lives now, and people are still afraid to even talk about it. So I would advise you to put an arm around her, take her for a meal, take her for coffee, sit her down and say: Listen, as a friend, I want to talk to you about this.

And if you don't want to talk to me, fair enough, but you should talk to me, and you should open up about it.

CONAN: Jessica, thank you, and good luck.

JESSICA: Thank you so much.

CONAN: After the death of Ryan White, his mother asked Elton John to be a pallbearer and sing a song at the funeral. In his book, "Love Is the Cure," her writes: I ended up going back to my first album and to the song "Skyline Pigeon," a song about freedom and release.

(SOUNDBITE OF SONG, "SKYLINE PIGEON")

JOHN: (Singing) ...you've left so very far behind. Fly away, skyline pigeon, fly towards the dreams you left so very, so very far behind.

CONAN: More with Elton John in a moment about AIDS, loss and activism, and about his book "Love Is the Cure." Stay with us. I'm Neal Conan, it's the TALK OF THE NATION from NPR News.

(SOUNDBITE OF MUSIC)

CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. We're talking with Elton John this hour. Rock star may be an understatement. More recently, a vocal AIDS advocate in this town - in town this week for an international AIDS conference taking place across the street.

In 1992, he created the Elton John AIDS Foundation to support prevention and treatment efforts, to fight against the stigma that often surrounds HIV and AIDS. In his book he notes that while the disease exists in every population, it's heavily concentrated in marginalized populations, groups that often make people uncomfortable.

I wasn't going to shy away from that, he writes, because guess what? People do survive on the streets selling sex, people do use drugs. That won't change by turning a blind eye to them. And I knew from personal experience that everyone deserves the same level of dignity and humanity. After all, I was a recovering addict. Who was I to feel superior to anyone else? I didn't, and I still don't.

The bottom line is we're all human, we all deserve to be helped and to be loved. I was determined to infuse my foundation with that set of values. More from Elton John's new book in an excerpt at our website, at npr.org. We want to hear from those of you with HIV. And AIDS activists, what was your first step? Where did you begin to fight against the disease? 800-989-8255. Email talk@npr.org. And let's go to David, David on the line with us from Denver.

DAVID: Hello, thank you for taking my call.

JOHN: Hi, David.

DAVID: I started my work in the spring of 1982, in the earliest years of the epidemic here in Colorado, before we had a case of AIDS identified. And I would say that in the current context, the three ways that are paramount at this point in which a person could contribute, both as an activist who is living with AIDS but community members who are allies of those us who live with AIDS.

And I have lived with HIV since October of 1981 from blood transfusions in a college in New York. So firstly, we have AIDS drugs assistance programs run by states, partly federally funded, partly funded by states variously around the country. And many of them have waiting lists. We need to provide and see to the provision of adequate funding to get those waiting lists eliminated and to get people who have HIV on the drugs that they need in order to survive, not only for their sake but also for the public health objectives that are promoted by getting people in treatment and getting them to viral undetectability.

Secondly, there's another way, and that is that...

CONAN: Can we go one at a time, if you don't mind? And Elton John, the cost of these drugs - the antiretrovirals are very effective, but nevertheless, they are very expensive, and it's difficult to get some people to take them on a regular basis.

JOHN: Yes, but they've got to become available, and people who are on the waiting lists, who are in danger of being cut off the waiting list - we just went through this in Florida, where 8,000 people were in danger of being eliminated because of their poverty, and they couldn't afford the treatment.

We must ensure, and this is one of the reasons I'm here this week, is that these waiting lists are eliminated, that people have access to drugs, that they take them on a regular basis, because if they don't, then they become resistant to the virus - you know, the virus becomes resistant. And so they must take these drugs, they must have access to them, and they must have access to them quickly, and they must take them regularly.

So, you know, what David is saying is absolutely correct.

CONAN: David, your other point?

DAVID: Another point would be promoting independent living on the part of those who are chronically ill and disabled in part or in whole or episodically with HIV and AIDS by particularly assisting with Meals on Wheels programs and delivering meals, absolutely essential. I'm on such a program. Without it I could not live independently.

CONAN: I think we heard some of that earlier from Elton John.

JOHN: Well, there we've gone back to - as I was saying, we've gone back to 1990, where people are in desperate need of a service to provide them with a life that they can't provide themselves for: meals, medicine, nursing, whatever. It's - that side of things seemed to have gone away, but it's still there. So another good point.

CONAN: And David, one more, then we'll give somebody else a chance.

DAVID: Thank you for your leniency, in a sense. Stigmatization. We have a vicious, vicious problem developing in the United States with regard to the criminalization of sexual expression on the part of persons living with HIV. And sexual expression conducted safely is something that is, I regard, and many of us as activists regard, is a birthright of human beings generally, but it is also our birthright too, as I said, conducted safely.

And when we have, as we do in Iowa, 25-year prison terms for persons who use protection and engage in sexual expression, when we have assault laws, as in South Carolina, that associate with attempted murder, criminalization only promotes stigmatization. And as Mr. - well, as Elton John has identified, diminishing stigmatization of persons living with HIV, as well as the disease, is absolutely essential if we're going to make serious progress, not only in the United States but throughout the world, throughout the world globally, in the context of the pandemic.

CONAN: Thanks very much for the call, David, and it's not simply the situations that he was talking about. We read about situations in Africa - I know your foundation is active there as well - where countries like Uganda are in the process of passing draconian legislation about sexual expression.

JOHN: And in Russia and Ukraine too. So it's not just Africa. It's - yes, repression of any kind is wrong. Discriminatory behavior against people's religions, color and their sexual orientation is wrong. It's a basic human right to be whoever you are, to believe in whatever you do. And what David was saying is absolutely right.

His third point was the most moving point at all. It's just that, you know, until we get rid of this hatred and this ignorance that is foisted on the homosexual community by people who should know better and use religion to, you know, fly the flag and use it as their shield, when they're no more religious than Adolf Hitler probably was, if you're going to do that, if you're going to be discriminatory, then we have to - we have to take action against these kind of people.

And we are beginning to take actions against people in Uganda, and we are - the British government has come on board and threatened the Commonwealth countries with withdrawal of aid if they do this. So it's the governments that can do this. It's the head of states of the powers that are disgusted by this kind of discrimination that can make the changes, and I believe they will be made.

CONAN: Here's an email from Daniel: I would love to hear Sir Elton's thoughts on the so-called Berlin patient who appears to have been cured of his AIDS and has no detectable HIV load. Does this finding, albeit just one person, change where he would put his foundation's money, or is palliative care still the focus?

JOHN: I read about this last week, and it's quite an amazing - it's a man who lives in America.

CONAN: And we're going to be talking more about this a little bit later this hour.

JOHN: Yeah. But I don't give - we don't give money to research. But it's - if this is the case, then it is certainly worth looking into it. And I'm sure people who are in Washington this week who are physicists, scientists, doctors, are looking at this very, very closely because this is an extraordinary case of someone who had the virus for five years, had a bone marrow transplant, and then it went.

So of course this is something we have to look into. I'm still really, as head of the foundation, giving money to prevention and to actual people who need it right now.

CONAN: Let's see if we can get another caller in. Let's go to Helena(ph), Helena with us from Portland.

HELENA: Hello.

CONAN: Hi, you're on the air, go ahead, please.

HELENA: I'm calling in to say what it was like to be a mother of a son who had AIDS. And parents frequently were closeted too, because they had no support. And it's still painful to look back at that period. He died in my arms, and he couldn't even tell people because as one said to me: Well, what's the difference if he had cancer? And I said: Well, a dentist would treat him, an undertaker might bury him. But that wasn't true for my son.

So I'm sorry, I'm too upset.

CONAN: All right, now. When was this, Helena?

HELENA: David died in 1995.

CONAN: And even now you can hear the pain in your voice.

HELENA: He died in my arms. It's - I was in an academic setting. These were highly educated people. I started doing research in Ireland and England, in Portland and in San Francisco. I even published some of it. And it was looking at gay people and what was going on with them. And I was warned that it was not good for my career because the assumption was if you're doing gay research, you are gay. So therefore, you know, you get the same stigma.

So you look back at your career, and you look back at the pain you were going through, and there was really no support. I mean, one of my colleagues, I found out later, referred to my research as "Helena's fag research." And these are highly educated Ph.D.s. So I'm still in pain.

CONAN: Well, we're sorry for your loss.

HELENA: OK.

CONAN: Thanks very much for the call.

HELENA: Bye.

CONAN: The - it's difficult.

JOHN: It is shocking to hear something like that. It - there's nothing you can say that will ease this woman's pain. I mean I became friends with Jeannie White, and of course...

CONAN: Ryan's mother.

JOHN: And - Ryan's mother. And even now - I mean, she read the names of the quilt out yesterday. She said, I'm speaking for every mother who lost her son or her daughter, and she was visibly upset. You know, it's - she went through exactly the same, having to move houses because people were so ignorant. The violence and the indignity heaped on a wonderful human being whose just sexual orientation happened to be different is a disgrace in this day and age, in the 21st century or the 20th century that we live in, or that she was living in.

CONAN: Do you, though, see a culture changing? Do you see in the progress towards gay marriage - again...

JOHN: I do.

CONAN: ...it's outlawed...

JOHN: Yeah.

CONAN: ...against the Constitution in, I think, 31 states. But there are definite movements.

JOHN: There's a domino effect happening, and I see it tumbling, and I see a change. Change, unfortunately, doesn't happen overnight. It is a thing that you chip away. Northern Ireland is a situation I've lived with ever since I was born. The troubles in Northern Ireland, it got solved. It took so long to solve it, but it took dialogue, and it was saved, and it was changed. Smallpox took 150 years.

AIDS is not going to take that long, but attitudes will change. A new generation of people will come up who are not bigoted, who are not ignorant, and they will seize this opportunity of trying to change the landscape of the world. I'm a great believer in that. And if you aren't, then you might as well give up. But I do believe that people, on the main - in the main, are good people, but we only hear from the ignorant few.

CONAN: Cultural change. Getting back to your experience, you were, as you mentioned, an alcoholic, a drug addict. You needed not only to go through rehabilitation; you needed to go through a cultural change as well to, you say, get away from the situations and some of the people who were enabling you, who led you down that road, who you partied with.

JOHN: I couldn't ever - when I came out of treatment in Chicago, I couldn't see those people again. I didn't want to see those people again because they basically weren't my friends. They were using my money to, you know, to score drugs, and I would be, you know, sharing the drugs with them. They only really wanted to know me because I was affluent and wealthy and, you know, where I was the drugs were. They weren't my friends.

My friends were telling me, year for years, for God's sake, get your act together, and I wouldn't listen. Of course I had to make a cultural change, but I wanted to. I was in such misery, living the life that I had. And I just - you know, the funny thing that I couldn't say, three words: I need help. It was beyond me. It was beyond my capabilities to be that humble to say I need help. I associated my success and my so-called intelligence as a person of being able to do it by myself, and - and of course I couldn't.

And in the end, that pride - it's pride. My pride nearly killed me, and it's a ludicrous way of thinking. But drug addiction is such a serious form of illness. You don't think in a straight way. You don't think in a normal way. You think in an irrational way. And thank God, someone like Ryan White and Jeanne White gave me the impetus to say my life is wrong, I'm an abominable person. They are wonderful. I want to be like them. Let me change my life, and I did.

CONAN: The book is "Love Is the Cure: On Life, Loss and the End of AIDS," the author Elton John. You're listening to TALK OF THE NATION from NPR News.

Austin's(ph) on the line with us from Phoenix.

AUSTIN: Hi. Thanks for having me.

CONAN: Sure. Go ahead, please.

AUSTIN: I just wanted to say that I've been living with HIV for several years now, but only started becoming an activist and advocate recently. With HIV infection on the - the rate on the rise among 13 to 24-year-olds, a group of us made a documentary called "Positive Youth" to give a face to HIV, the stigma, research advances and how young people with HIV are living with the stigma and all of that as well.

So I definitely recommend anybody who's recently become positive or want to know more about HIV, rather than just being afraid of it, to see this documentary.

CONAN: Could you talk to us a little bit about stigma? This - you're of an age group where, I think, the other F-word, as we say, is used as one of the standard insults.

AUSTIN: Well, there's stigma just in - within the HIV - within the homosexual community, where I wouldn't tell people my status because I'd become a social leper, so that if there's no conversation about it, then there's no way for people to share information.

CONAN: Even within the homosexual community.

AUSTIN: Yes.

CONAN: And do you see a way out of that?

AUSTIN: Well, we've tried to make this documentary to start a conversation. I think if people were more educated on what HIV is and how to deal with it and how to make sure not to get it - I mean, with the advances in...

CONAN: Prevention is one thing, stigma is another. Elton...

JOHN: How do people see this documentary? Can they go online and watch it?

AUSTIN: Yeah. You can see it on logotv.com. It's - it was a project with Logo TV and OUTtv Canada. It's also been on - it's been touring the festival circuit. It's won best documentary in a couple festivals.

JOHN: That's a great idea that you did this. And if people are listening and they want - and they're afraid of their HIV status and - please, by all means, go and look at this documentary online.

CONAN: Remind us of the name, if you would, Austin.

AUSTIN: "Positive Youth."

CONAN: All right. Good luck with the film. Thanks very much.

JOHN: Thanks, Austin.

AUSTIN: Thank you.

CONAN: Here's an email that we have. This from Tim: I just want to thank Elton John for all of his efforts in the fight for respect and dignity for everyone in the AIDS community. As a gay man who's lived through the stigma and scourge of the AIDS epidemic, Elton's sobriety, honesty and courage and voice has helped thousands and inspired millions of others to move forward in their lives. So...

JOHN: That's very nice. Thank you.

CONAN: It must be - how do you know - we were talking about starting. We were talking about giving money away. How do you know you've made an impact?

JOHN: By going to see - it's no good raising the money and giving it away unless you don't go and see the results for yourself by visiting projects, whether they're in America, whether in Africa, Ukraine, Britain, France, wherever. And if you're feeling as if you're browbeaten and you haven't got much energy, then if you go to a project and you see the gratitude on people's faces and the difference that your money is making, it just fills your tank up within 10 seconds. People's gratitude, people's just sheer joy at being remembered and being thought of as part of the human race and not being discounted or left behind makes it all worthwhile.

CONAN: Good luck. Elton John is our guest. His book is "Love Is the Cure: On Life, Loss and the End of AIDS." He joined us here in Studio 3A. More about the fight against HIV and AIDS in just a moment and focus on a cure, a word we don't hear for many years in this context but that is beginning to change. Dr. Steven Deeks will join us. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.