NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
Twenty-five years ago, five young homosexual men checked into hospitals in Los Angeles with a mysterious illness. These previously healthy men were severely weakened by an extremely rare form of pneumonia. Two died soon afterwards. Shortly after that, hospitals in San Francisco and New York City started seeing similar cases - young gay men with unusual forms of cancer and other diseases that don't normally afflict the young and healthy.
On June 5th, 1981, the Centers for Disease Control published its first report on what's come to be known as Acquired Immune Deficiency Syndrome: AIDS. Very little was known about the disease at the time - what caused it, where it came from, how it was transmitted, and what if anything, could treat it or cure it. And while we've found answers to all but the last of those questions in the quarter century since, AIDS has killed an estimated 25 million people. Forty million more are infected, and that number grows by five million per year. It's in every country, every age group, men and women, gay and straight, rich and poor. Today, we're going to talk with four people whose lives were changed by AIDS, and we want to hear from you. How has this disease affected your life, your family, your friends, your community?
Our number is 800-989-8255. That's 800-989-TALK. Our e-mail address is firstname.lastname@example.org.
And we begin with Drew Tillotson. He's the surviving partner of Archie Harrison, who was an actor in New York City. You may remember a series of stories about Archie that was broadcast on ALL THINGS CONSIDERED in 1987 and 1988 that followed his battle with AIDS. Drew Tillotson is now a psychologist and psychoanalyst in San Francisco. He joins us today from the studios of member station KQED. And thanks very much for being with us today.
Dr. DREW TILLOTSON (Psychologist): Thank you, Neal.
CONAN: No one who heard those stories will ever forget Archie. But for those who didn't, could you tell us a little bit about him? Who he was, how you remember him?
Dr. TILLOTSON: Archie was very alive and a very dynamic person, very intelligent and creative, warm, and very funny, actually.
CONAN: Hmm. Even in the disease?
Dr. TILLOTSON: Even so, yes.
CONAN: He was one of the first AIDS patients to be treated with AZT, which we learned didn't work. Doctors subsequently came up with treatments for HIV positive people like yourself. But I wonder if you can remind us what it was like 20 years ago, when this seemed unstoppable.
Dr. TILLOTSON: Well, there was a real atmosphere of fear and panic really, because there were people dying rapidly. I had friends that I would see one day, and they would be dead by the end of the week. There was really no help. There was really no treatment. So it was quite a frightening time in Manhattan, where I was.
CONAN: Mm hmm. Remind us, how did it start with Archie? When was he first aware that he was ill?
Dr. TILLOTSON: I believe - if I think over the course of history, here - that he became symptomatic in 1984. I don't - he wasn't treated at that point. He wasn't hospitalized, but I do believe at that time that he had pneumonia, pneumocystis. His official diagnosis came in 1986. He was admitted Bellevue Hospital in New York, and that was when he got his official AIDS diagnosis. So that was February 1986.
CONAN: Twenty years ago, you know.
Dr. TILLOTSON: Right.
CONAN: Yeah. There was hope. A lot of things provided hope that was illusory for a long time.
Dr. TILLOTSON: Yes. Well, hope, let's see. I don't know about hope. I think that at that time in New York, with a lack of really any kind of medication that - gay men largely, gay men and bisexual men and women actually turned to spirituality. There was a pretty prevalent spiritual movement which was very helpful at the time, because there was really nothing else in the way of support. And so, I would say also that the gay community came together around this and galvanized, became galvanized around this, because we were largely discriminated against and largely shunned by much of society.
Our current, the president at the time and the medical establishment was still, I think at that time, really unsure about a number of things. And so, there was a kind of a hands-off feeling about it, where people that were infected with the virus or were being treated were somewhat stigmatized, I would say.
CONAN: Hmm. There was also, as you say, a pulling together. If anybody was going to help you, it had to be your friends. In many case, family members weren't around.
Dr. TILLOTSON: That's right. Mm hmm. In some cases, I believe they were. In other cases I think it was hard for people, because when people in families learned of their son or daughter's AIDS diagnosis, they were also learning for the first time about their sexual orientation. So that was a lot, you know.
CONAN: A lot.
Dr. TILLOTSON: I'm gay, and I have AIDS. You know, it's…
CONAN: And there was a sense of, I would think, doom for a lot of them.
Dr. TILLOTSON: At that time, yes.
Dr. TILLOTSON: Yes. At that time, it was - I think you pretty much knew with no treatment in sight that you were pretty much going to die. Yeah. I believe so.
CONAN: At the time, did you know that you were HIV positive?
Dr. TILLOTSON: No. At the time I assumed. Once Archie was diagnosed and he began his treatment, I made an assumption that I was. But I felt at the time that to be tested - let's just say this. I moved forward with the assumption that I was, and that I was well at the time and that I needed to help him. And so, I thought at the time, as I think back on it, and if I reflect on it now, I think that I needed to go into a kind of denial in order to help him and be supportive for him so that I wasn't struggling with my own fear.
CONAN: Mm hmm.
Dr. TILLOTSON: So…
CONAN: We're hoping to hear stories of how this awful disease has touched people's lives today. 800-989-8255, 800-989-TALK. E-mail is email@example.com. And let's begin with Sherry(ph). Sherry's calling us from Portsmouth, in Virginia.
SHERRY (Caller): Hi.
CONAN: Hi, Sherry.
SHERRY: This is such a bittersweet moment. I remember September 5th, 1988, with my friend Roger Wright(ph) who passed away. And we were playwrights in the playwriting program at UCLA. And this was a disease that no one even had a name for. And the night I went to visit him, I had no idea that I was seeing him for the very last time. And he asked me, I asked him if he was afraid, and he said yes, and would I hold his hand. And it was at a time that no one had any idea how AIDS was transmitted, or what it was called, even. It really didn't have a name. It was just that all of a sudden, so many good people were dying.
And this was the last - and so I held his hand, and I was really afraid, but I knew that it was more important for him for me to hold his hand than to be afraid of what this ultimately ended up being. It's just something that's hurt a lot of good people, and people just get caught up with the homophobia and all sorts of things that don't really matter when you think about who these people are. They're our brothers and our sisters and our family and our friends, and we have to be mindful of that, always.
CONAN: Yeah. Holding somebody's hand, Drew, you know about that.
Dr. TILLOTSON: I do.
SHERRY: Yeah. And it's frightening because all of the media makes it so insane that you start to believe things. I mean, you know, people talk about millions and millions, when it all comes down to it - it is one person facing, you know, the unknown. And as a family and a friend, you have nothing - what you want to do is what you hope someone will do for you, is to make sure that they hold your hand in that moment that none of us really understands, but we all have to face.
So, you know, I get very - I live in Virginia, and it's really very focused on the homophobia in terms of how people deal with this has been really awful, because there're people dying and yet they won't - that they will point to the Bible and talk about something about, you know, gay people or that homosexuality is a sin. But even if that were the case, which it is not, people are more than homosexual. People are dying. More than, you know, just, what they consider, you know, the ordinary or the person who, well, okay, I understand why they have AIDS. Anyone is susceptible to this. And then we have other illnesses and other issues that will come down the pike, and so we have to understand that it is not about the name of the illness - it's about the individuals, the human beings, that are affected by this and what we must do in order to prevent this and to stop this.
Africa is in dire need, and we absolutely cannot continue to ignore this. And Africa - and this is something that we have an equal responsibility for. We are America. We are the greatest democracy in the world and people must, must give us the opportunity live to our ideals. And so that is what I hope this anniversary will represent to people, is be mindful of the incredible homophobia and discrimination and wrongness this immorality that was taken out of the name of ignorance. We cannot allow that to continue to be the way that we react to something as serious as this.
CONAN: Uh, Sherry…
SHERRY: And on this anniversary, I wish God bless to all, and I'm pleased. Let's, in another 25 years from now, on the 50th anniversary, let's have something much, much better to say about how we've dealt with this.
CONAN: Amen to that, Sherry. Thanks very much for the call. Um, that feeling of homophobia that she talked about, I think you were talking a bit about that too, as well, Drew. And that has not gone away as the disease has spread into all elements of society: male, female, straight, gay, rich, poor, as we mentioned earlier. Twenty-five years on, well, it's now been some time since your diagnosis as well…
Dr. TILLOTSON: That's right.
CONAN: …how are you doing?
Dr. TILLOTSON: I'm doing very well, thank you. I'm actually very healthy and I'm very content. And I'm pursuing my dreams, and I'm having a very good life.
CONAN: And yet, there must be some residue of anger about everything that happened 20 and 25 years ago. About the lives that could have been saved if these treatments had been come up with earlier. Nobody's fault, really, but there could have been something more done.
Dr. TILLOTSON: I think so. I was listening over the eight-part series from, you know, '87 and '88 in preparation for this, and I was thinking back to that time. And I do think more could have been done. I think there was a lot of fear. I think our, the administration at that time in the White House was frightened and homophobic, and I definitely think that more could have been done. It's hard to know what, because I do think that while there were political problems, I'm restraining myself here…
CONAN: Yeah, we could hear it.
Dr. TILLOTSON: While there were political problems - the medical establishment I know, from being involved with Archie's illness at the time, there were some very dedicated people at that time that did have the right things in mind.
CONAN: Drew Tillotson, thanks very much for being with us today and for sharing your story again. And here's to Archie.
Dr. TILLOTSON: Thank you, Neal.
CONAN: Drew Tillotson, a psychologist and psychoanalyst in San Francisco. He joined us today from our studios of our member station KQED.
More after a break. I'm Neal Conan. You're listening to TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington. Twenty-five years ago, the first cases of AIDS left doctors frustrated and confused as their patients died with almost no explanation. Today, there are new treatments, prevention programs resolved to eradicate AIDS, yet the epidemic continues.
You can hear the first report that NPR aired on AIDS at our Web site. That report from 1982 shows how little was known what was then called a frightening medical mystery. The audio is at the TALK OF THE NATION page at NPR.org.
Today, we want to hear stories about how AIDS has affected our lives, as well as the lives of our families and our friends. Of course, you're invited: 800-989-8255, 800-989-TALK. E-mail is firstname.lastname@example.org. And let's get Shannon on the line. Shannon's with us from Memphis, Tennessee.
SHANNON (Caller): Hi, how are you?
CONAN: Very well.
SHANNON: Love the show.
CONAN: Thank you. What is your story?
SHANNON: Yeah, I was listening and I was actually kind of moved by what I heard. But what I wanted to talk about was something more scientific. I was diagnosed in April of 1995. And at that time, a doctor told me, well, son, you have two years to live. And I didn't get treated for a while. But when I actually did end up going in the hospital and having PCP, my T-cells fell below 200. And they said at the time I had AIDS.
I didn't really understand what that meant, if below 200 was always AIDS and above 200 was simply HIV positive. And, you know, it's kind of confusing today. Some people say, HIV positive, some people say AIDS. And I say HIV positive. But, there's a stigma with saying that you have AIDS. So, think about it.
CONAN: Yeah, there is sure a stigma about saying that you have AIDS. As you've lived with this disease, though, I note it's been a lot longer than two years.
SHANNON: It has, it's been 11 years and I'm healthy today. And I've been on a lot of different treatments. I was on one of ht first studies they did with the drug called Norvir. That was really helpful for me, but I've changed drugs three times. Today I'm healthy, but it's been a long road.
CONAN: And it's always there, isn't it?
SHANNON: It is, and you know, actually, I'm kind of not feeling so well today. I was a little sick this morning. And the first thing that I think of whenever I have a cold or whatever I have - anything wrong with something in my body, I think, oh, I'm going to die. It's always there.
CONAN: Shannon, good luck to you.
SHANNON: Okay, thanks so much.
CONAN: So long. Joining us now is Richard Knox, NPR science correspondent who is with us from his home in Dorchester, Massachusetts. Richard, always good to talk to you.
RICHARD KNOX reporting:
Thank you, Neal.
CONAN: Back in 1981, you were reporting on this disease for the Boston Globe. Just a handful of cases in some hospitals in major cities - remind us, what did you think was going on at the time?
KNOX: Oh, I think it was a lot of bafflement, to use a word that I used in one of the first stories that we had back in 1981. You know, the words that popped out are mysterious epidemic, touched off one of the most intense medical sleuthing episodes since toxic shock syndrome appeared on the scene last year. Of course, in retrospect, toxic shock nobody talks about that anymore, fortunately.
CONAN: Mm hmm.
KNOX: But we, I think it's fair to say nobody really had any notion that we were going to be talking 25 years later about a continuing pandemic everywhere in the world. You know, 65 million people infected, 25 million of them have died. I mean, this would have - I mean, maybe it's a good thing we didn't know.
But it was, it was a mystery, I think, compelled a lot of attention initially among a certain small group of doctors - the infectious disease specialists who recognized that this was probably something to do with an infectious disease agent and something clearly to do with the immune system, but who really for a long time didn't - well, for months and months didn't know what they were dealing with.
CONAN: Mm hmm. Give us a sense on how it was being reported in 1981, when we knew so little about it and there were so many misconceptions.
KNOX: Well, it wasn't being reported very much, unfortunately. Occasionally, articles would pop up in the major papers. I don't think anybody reported on the June 5th article in Morbidity and Mortality Weekly Report, which is the CDC publication, that the anniversary of that first report we're observing in another week or so.
So, it was pretty obscure. Occasionally, there would be a small article in a medical journal that would get picked up, and then it would sink beneath the surface for most people and from most doctors for that matter.
When it did get reported? I think it was, you know, it was the old - it reminds me of the blind men and the elephant, grappling different parts of it and trying to figure out what this beast was, and how big it was. For instance, my colleague Larry Altman of the New York Times had an article in July of 1981 that talked about 41 cases of Kaposi's sarcoma in gay men in New York, and that was pretty weird. Because this is a - at that time, was a type of rare cancer…
CONAN: Mm hmm.
KNOX: …blood vessel cancer that was only seen in elderly men in Africa. So, you know, there was no sense in that report, because nobody could know that all these things were connected. And it ultimately was a retrovirus that was causing all of these manifestations.
CONAN: As you say, we all learned new words, new language - Kaposi's sarcoma, pneumocystis. Yet, this presented in so many different ways, the underlying aspect of it, the immune system - that was realized pretty early on.
KNOX: Yes, that was the big obvious thing, is that something was causing the immune systems of these otherwise, you know, healthy, young people to collapse entirely. And they would get this whole range of diseases, infections that don't normally - you know, people even who were immunocompromised by virtue of the fact that they're taking drugs to prevent rejection of transplant organs. You know, they sometimes get some of these, but not the kind of fulminant, out of control infections across the board that are being seen in people who weren't immunosuppressed for any known reason.
And these were, not only pneumocystis crania pneumonia, which is a very unusual pneumonia before then, but also fungal diseases and cytomegalovirus and a, you know, whole range of things. Very unpredictable and hard to interpret just how they were all popping up.
CONAN: Let's get another caller on the line. Mitch is with us calling from Jamaica Plain in Massachusetts, not far from where you are, Richard. Go ahead, Mitch.
MITCH (Caller): Hi, nice to speak with you.
MITCH: I wanted to call and just talk about, a bit about the emotional side of this. And I lost my first friend in 1982 from what they called GRID then, I believe - gay-related immune deficiency. And since then, I lost 22 friends. And I was fortunate enough never to get the disease. But I watched 22 of my friends die, and was actively there in some of their dying.
And it's a hard thing to bear. I mean, to go - to be a young person, and it's almost like being in wartime or something. It's unbelievable that that amount of young, talented, friendly, terrific people could have died from this disease. And each one was a different story. Some had families that accepted it, some had families that didn't.
And I've gone on to luckily be successful in my life and been able to help out and donate and do walks and mentor and things like that. But I miss them all terribly. And there's never a day that goes by in my life that I don't think about some or all of them. And I know that my story is not, you know, I'm not alone. I'm sure that there's other people that this - it happened to as well.
We truly lost an entire generation of interesting, wonderful characters and I miss them a lot.
(Soundbite of laughter)
CONAN: Yeah, Mitch, I hear you. Thanks very much.
MITCH: Thank you.
CONAN: Joining us now is Andrew Moss, a professor of epidemiology at the University of California at San Francisco. He joins us today from the studios of member station KQED, which is there in San Francisco. Nice to have you on the program today.
Professor ANDREW MOSS (Epidemiology, University of California at San Francisco): Hello, Neal.
CONAN: You started seeing that generation, those young gay men walk into the hospital where you worked in San Francisco back in the earliest days of this disease's detection. Richard was describing some of the illnesses they were coming in with. When did you realize that they were all connected?
Prof. MOSS: Well, I think right from the get-go, in San Francisco, it was a disease of gay men. So they were all connected by that right from the start. And that immediately made one think about a sexually transmitted disease. So I don't think we thought they were a whole sort of separate - but also, actually, what we saw in San Francisco was very much Kaposi's sarcoma in the early days, which is one reason oncologists led most of the research in San Francisco and still do.
CONAN: Hm. And as you looked at it, though, this very odd form of cancer - sexually transmitted disease - but it never presented like this before.
Prof. MOSS: No and that was the strange thing for me. I was a cancer epidemiologist at the time. That's what I did, although I was very young and very new. But I also lived in the Castro. So I picked up this vibe that was running around of a sexually - well, of a transmissible cancer. And, of course, there aren't any transmissible cancers.
So this was a kind of shocking thing to hear, and it was the thing that caused me to want to sort of leap into this disease and find out what was happening and study it. Plus, it was in my neighborhood.
CONAN: And there was - you said - immediately suspected sexually transmitted disease, but who knew?
Prof. MOSS: Who knew and that's what - I'm an epidemiologist, and that's what our job was, to find out who was getting it and how serious it was and how it was being transmitted and whether it would spread to the wider world. That's what we did. That's what we started doing, really, at the end of 1981 and in 1982.
CONAN: And how did you communicate? I mean, since so little information was available, you know, it's difficult to say, you know, at the time, because there were so many rumors. There was so much fear as this spread and grew, you know, what was accurate, what was true? We had - at one point, I think it was Margaret Heckler, the secretary of health, I think in 1984 announced that scientists had found that HIV was the cause of AIDS, and said a vaccine was going to be available in two years.
Prof. MOSS: Yeah, I think that's right. A lot of bad things were said, often for political reasons. And it was very difficult. And it was very difficult in the first couple of years, because it wasn't until 1984 that the virus was identified. And once it was identified, you could have a blood test and then you could tell who was infected and you could really see what was happening.
But for the first two years - really through 1982 and 1983 - there was a huge cloud of fear. And part of that fear was whether this virus would spread to the general heterosexual population. And that, of course, laid a kind of whole level of paranoia over working in AIDS, in those days, and made people very frightened - frightened about that they might catch it, but also frightened that there might be severe political backlash. And one of the things I think we've forgotten about was how tense a political situation it was working in AIDS those first few years.
CONAN: At UCSF, a group of researchers - I suspect including yourself - decided to investigate this. In those early days, were you able to get funding?
Prof. MOSS: Well, that was a real disaster. I mean, I have to say, the federal funding mechanism, which - the National Institutes of Health - did respond, but they responded on their normal timetable, which is kind of like the timetable of a glacier, you know? It flows very slowly.
So, although we did start writing grant proposals in 1982, it took a very long time to get any money. And what many of us at UCSF ended up doing, including myself, was going to the city of San Francisco for research funds. As you probably know, that doesn't happen very often.
And in order to do it, we had to mobilize the gay political community, which in those days in San Francisco was very developed. There were enormous, grassroots, gay political clubs, the biggest in the country. And they, I have to say, responded really well to this situation and realized immediately that they had to help us, the researchers - not necessarily their natural allies -to go to the city of San Francisco and then the state to raise money, so that we could get working really before the kind of glacial, federal machinery finally clicked into action.
And that's what we did. And it was a very strange process, because I, for example, would be going around the gay political clubs in San Francisco giving my speech, which was kind of a horrific speech in those days. It was a sort of a you're-all-going-to-die speech. And getting past the reaction to that and trying to convince people that this is something they really need to be mobilized about. And then, seeing them get mobilized and do it, which was really, actually, a wonderful experience.
CONAN: We're talking today about living with AIDS for 25 years. Of course, over the course of that quarter century, 25 million people - estimated - have died from it. You're listening to TALK OF THE NATION from NPR News.
And Richard Knox, let me ask another question: when, in terms of the federal funding, did this glacier that Dr. Moss was describing finally get moving?
KNOX: Oh, I think it took a couple of years before real money started flowing, but, you know, that's a crucial couple of years. And, then of course, it didn't all - we didn't begin spending billions as we now do. But I think it's not just the glacial quality of federal bureaucracy and business as usual in the NIH grant process. I think that there was active resistance to spending money on this particular disease because is was immediately and widely seen as a disease of gay men, and only later, I suppose, as of intravenous drug users. And there certainly were - it's well documented and told by a number of people now how much difficulty the people in the CDC were having in getting just basic money to do the epidemiology to try to figure out how big this thing was and where it might be going. I mean, the CDC is responsible for monitoring infectious diseases, and they had to beg, borrow, steal, and use subterfuge in order to move money around for quite a long time at the beginning of this epidemic.
CONAN: Andrew Moss, of course, progress has been made. It is treatable. It's expensive, but treatable. There is certainly no cure, though, and rates of transmission are disturbingly in some parts of the world. Where do you think we are now with AIDS?
Prof. MOSS: Well, I've had the experience of working in Africa the last couple of years and seeing the beginnings of anti-retroviral treatment in Africa - in east Africa in my case. And that has been a really amazing experience. And I have to say, I feel very upbeat about it. I think that the world did an amazing thing from a public health point of view in the last couple of years in taking this very expensive and difficult treatment and disseminating it in developing countries. Now, it's only the first step. It's going to be very difficult, and I don't know what the political commitment is to keeping this funded, but I think this has been truly amazing, and I'm very encouraged by it, and I urge everybody to kind of push for that to keep going. Because what we've really done is faced up to the issue of AIDS in Africa - where, you know, maybe something like 70 percent of the world's AIDS is - and the fact that for it to be treated in Africa - and we don't have a vaccine, so it has to be treated - for it to be treated in Africa, we and other rich countries have to put up the money, basically.
And we have done step one, and now there's step two, three, four, five, six to come that we have to keep doing it for.
CONAN: Yeah, I've read estimates that of the 40 million estimated to have the HIV infection, 30 million are in Africa. And, of course, that's going to mean an awful many of them young, and it's going to mean a lot orphan children. But, as they point out, with anti-retrovirals, big difference between an orphan at the age of three and an orphan at the age of 15.
Prof. MOSS: Yeah, and people do live. I think for everybody who worked in a - I mean, you're right. We don't have, as it were, a perfect cure. But for people who worked in AIDS, what happened when the triple therapy with anti-retrovirals came along was kind of miraculous. That is, you suddenly saw people who you had been accustomed to die suddenly turn around and live and get jobs and go back to work again, you know. And that has been a spectacular thing, and it's made working in AIDS optimistic, you know, for the first time in a long time.
CONAN: Andrew Moss, thanks very much for being with us today. Appreciate your time.
Prof. MOSS: (Unintelligible)
CONAN: Andrew Moss, professor of epidemiology at the University of California at San Francisco, with us today from the studios of KQED in San Francisco. When we come back from a short break, we'll speak with an AIDS activist working in Uganda, and later, your letters. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: This is TALK OF THE NATION, I'm Neal Conan in Washington. And here are the headlines from some of the other stories we're following here today at NPR News. Treasury Secretary John Snow has resigned. President Bush nominated Goldman Sachs CEO Henry Paulson to replace him. Snow's departure had been rumored for more than a year. And John Allen Muhammad, the so-called D.C. sniper, was convicted of six more slayings today in Rockville, Maryland. He acted as his own defense lawyer at the trial. The prosecution's star witness was Muhammad's young protégé and accomplice, Lee Boyd Malvo. Muhammad is already the death penalty for a killing in Virginia during his siege in the Washington, D.C. area in the fall of 2002. You can hear details on those stories, and of course, much more later today on ALL THINGS CONSIDERED from NPR News.
Tomorrow, on TALK OF THE NATION, we'll look into reports that U.S. Marines deliberately killed two-dozen unarmed Iraqis and covered it up. What we know about what happened in Haditha tomorrow on TALK OF THE NATION.
Today, we're talking about AIDS. It's 25 years since the first diagnosis of what was then a mysterious disease. Still with us is NPR science correspondent Richard Knox. If you'd like to join the conversation, our number is 800-989-8255 - that's 800-989-TALK. The e-mail address is email@example.com. AIDS has taken its worst toll in parts of Africa, particularly the sub-Saharan countries, where 60 percent of the world's HIV patients live. Uganda, however, has been one of the continent's major success stories. Education and prevention have made a discernable difference in the rate of transition. Noreen Kaleeba founded The AIDS Support Organization in Uganda. She currently works with UNAIDS. She's also featured in the Frontline documentary, The Age of AIDS, which will air tonight on PBS. It's gotten extraordinary reviews. And she joins us here today in Studio 3A.
It's a pleasure to meet you.
Ms. NOREEN KALEEBA (Founder, AIDS Support Organization, Uganda): Thank you for having me.
CONAN: You became involved in AIDS education because of a personal part. Your husband had got the disease and died from it.
Ms. KALEEBA: My husband was diagnosed in June, 1986. He died in January, 1987, virtually within a year of his diagnoses. But before he died, we had set ourselves up into a support group, which now has blossomed into a countrywide and region-wide organization called TASO in Uganda.
CONAN: And we were talking earlier in this program about the kind alarm and fear that the disease generated in this country when it was - tell us a little bit about what it was like in Uganda.
Ms. KALEEBA: By the time, you know, being told that your husband has a terminal illness is pretty traumatic. But as I recall, I look back, the most important - and but perhaps the most difficult element of that trauma was the rejection, the stigma towards me, towards my daughters. We have four children. And just before he died, my husband returned home from England where he had been diagnosed, and I cannot even begin to describe - it's been almost 19 years now - I can't describe how much the rejection was from everyone around us. And, virtually the people - especially from the health care workers, because when he was admitted in Milago(ph) hospital, he was over there for two months before he died, but during that entire time - two months - the healthcare workers did not touch him. And everything that needed to be done was done by me and my mother-in-law and my children.
CONAN: When you founded TASO, people told you, as I understand it, that if you started an organization that had the word AIDS in its title, people would not accept it. I mean, it would just be terrible.
Ms. KALEEBA: It was very - everybody said you can't. If you put the AIDS in it, nobody will turn up. But we deliberately wanted to put the word AIDS in it in order to name the disease. In order to make a very direct impression on the stigma. And it turned out the moment we opened a group service - counseling, care, and support - people came. People kept coming.
CONAN: Yet you had a very difficult time, as I understand it, that first year.
Ms. KALEEBA: The very first - the first year was really hard. I nearly was broken, because we stared TASO with 16 people - 12 of the 16 were HIV infected - but within the first year of our starting, all 12 died. But, of course, within the same year, more people had come in, but the first people to die were really too traumatic a blow on my resolve. It was so hard to overcome the emotions of the first year.
CONAN: AIDS is - an eloquent expression, I've read, that you made. AIDS, you said, breeds in silence.
Ms. KALEEBA: AIDS breeds in silence, and I'm glad, looking back now, that we all addressed - we really focused on breaking that silence. Silence breeds denial, denial breeds further silence. And therefore, and - there comes a kind of inaction that comes out of denial. And I know that over the last 25 years of our focusing on this pandemic as a global community, we've made many, many advances. But we have a long way to go with a regard to addressing stigma, silence, and denial.
CONAN: Hm. We want to get some more listeners involved in our conversation. Let's talk now with Kim. Kim's calling us from Greensborough in North Carolina.
KIM (Caller): Hi, Neal
CONAN: Hi, Kim.
KIM: My husband is the HIV coordinator for Wake Forest University Baptist Medical Center, and he had previously been the HIV coordinator for the pediatric department at University of Texas in Huston. But, in North Carolina, we have the fastest growing Hispanic population, and that's very evident in his patient base. It's been leaning towards Hispanics and straight black male and female, but now there's starting to be a little bit of a turn back to young, gay men. He had to disclose to a young man of 18 today that he was infected, and probably infected within the last 90 days.
CONAN: Let me bring Richard Knox back into the conversation. And Richard, does Kim's description, does that jibe with what you're hearing?
KNOX: Absolutely, yes. I mean, the - AIDS in the United States has, increasingly over the years, become a disease of ethnic minorities, especially African-Americans - as she mentioned - of both sexes. And to somewhat less degree, but a growing degree, of Hispanics. And I think that has, you know, partly to do with poverty and the sad fact that ethnic minorities are a lot more likely to be poor, are more likely to have less education, or less likely to be reached by the kinds of prevention efforts that we did so well in the early days of the epidemic in the United States in changing the behaviors of men who have sex with men. I say we - I mean, that community did it's own self-education to a remarkable degree, and then forced the federal government eventually to pay attention. The federal government's putting money into AIDS prevention, and you know, has a lot of programs now aimed at various parts of society, but clearly, it's not getting the job done in places where it's growing fastest.
CONAN: Thank you, Kim. Appreciate it.
KIM: Thank you.
CONAN: And Noreen Kaleeba, how did you get - how did you and others get people in Uganda to change behaviors?
Ms. KALEEBA: Changing behavior is a long process, but I can describe very briefly that there was a (unintelligible)-pronged approach to addressing HIV and AIDS. And one very important prong of that is the leadership. We had a very, very early opportunity, an advantage that the president took it upon himself to be open about the disease. And in his campaigns and addressing people, he would openly encourage people to change and beware. But also, very importantly, he would encourage people to change and beware, but also very importantly, it would encourage people to be compassionate and care for those that have HIV and AIDS.
But also, there was, very early, grass roots campaigns of explaining to people how AIDS is transmitted, how HIV is transmitted, and how it isn't transmitted. But a very important element of that, and the third prong, is the involvement of people who had been personally affected; positive people, families like mine that, at the time, were nursing loved ones who had HIV. And by actually witnessing to people that HIV was happening in our families. We broke the silence and we also brought the reality of AIDS in people's lives and in people's communities.
CONAN: Another word that Kim, our last caller, used, that I think has some resonance with your situation in Uganda, as well - poverty. You've talked about AIDS and poverty.
Ms. KALEEBA: Exactly. We're now beginning to realize that poverty is the key fuel, if you want to use the word. It's the fuel, and especially as we're beginning to see in Africa, their AIDS pandemic is taking on a female face. A female's face, in the sense that the new - if you look at the new number, the new infections that are coming out of Sub-Saharan, Africa, close to 60 percent of new infections are in women, young women. And many of these are women who have, because of poverty, have not been able to go to school; and because they haven't gone to school, they're, even the media, through which information is transmitted, is completely out of their reach.
There's also the element of poverty that puts women in very, very vulnerable situations. Women who are even in steady relationship who even recognize that their spouse might be, you know, getting relationships out of their relation, but they can't get out of that relation because they are poor. They can't take care of the children without their husband, so they remain in that situation and they get infected.
CONAN: Earlier, Andrew Moss, and epidemiologist who's been to Africa, says he's very encouraged by what's happened in Uganda and Kenya, and other places in Africa. Obviously, the situation is not so good in other countries in Africa at this point. Are you encouraged?
Ms. KALEEBA: I am. I can describe my, as mixed - my emotions as mixed. I am encouraged with how far we have gone, but I'm also very worried with how much we have to do. Especially - I go back to the situation of women. As long as we continue to see an infection that is aggressively infecting young women, the danger to, you know, to transmit the infection to children is higher. Women care for people in communities. Women are also responsible for producing most of the food that is eaten in many of these countries. So there is a very, very, you know, alarm bell - a very, very clear alarm bell sounding in that area.
I also feel that the resources we have dedicated to fighting AIDS in Sub-Saharan Africa are not adequate. And there is also a degree of corruption in some countries, whereby even the resources that are available within the countries are not equitably reaching where they need to get. So there are multiple difficulties that need to be addressed urgently.
CONAN: Noreen Kaleeba, thank you so much for coming in. We appreciate your time.
Ms. KALEEBA: Thank you.
CONAN: Noreen Kaleeba founded the AIDS Support Organization in Uganda. She joined us today in Studio 3A.
You can see her featured in the Frontline documentary, The Age of AIDS, which airs tonight on PBS. At the TALK OF THE NATION page at npr.org, you can find a link to the Frontline site, and there you can watch a preview of the documentary, The Age of AIDS.
And also, our thanks to NPR Science Correspondent Richard Knox, who joined us today from his home in Boston. Appreciate it, Richard.
KNOX: You're welcome.
CONAN: You're listening to TALK OF THE NATION from NPR News.
NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR’s programming is the audio.