The Early AIDS Epidemic in the United States: Views from Atlanta and Hollywood

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Booker Daniels: Good afternoon, everyone. How are you today? Outstanding. I'm Booker Daniels. I'm a member of the staff at the Division of HIV/AIDS Prevention at CDC. It's my esteemed privilege to be somewhat moderating or just introducing these incredible individuals for this panel session today. The title of our session today is The Early AIDS Epidemic in United States Views from Atlanta and Hollywood. And throughout the course of the conference there will be many sessions where people say there are two individuals that don't require any introduction. These two individuals certainly do not. But I will introduce them, nonetheless. Seated to my right immediately is Dr. Harold Jaffe, Associate Director for Science at CDC. And prior to this role he served 27 years as most notably as a medical epidemiologist and part of the initial AIDS investigation team and a former director of NCHHSTP. We're also joined by Dr. Jim Curran, who is currently the dean of the Rollins School of Public Health at Emory, Rollins University, Rollins School of Public Health at Emory University. Prior to this role, he had a career at CDC for 24 years and he was the initial director of the Regional AIDS Task Force on the initial outbreak of the epidemic. With that, I'll turn it over to the panelists and we'll get underway. [Applause] Harold Jaffe: I wanted to thank Booker for the kind introduction. I thought he was going to say: If there are two people who shouldn't be introduced, it would be Jim and me. But it's a pleasure to be here, and it's a pleasure to be on this session with Jim who played such a key role in the investigations of the early history of the AIDS epidemic. I guess the first question is why should you care? What difference does it make what went on 30 years ago? And I guess I can think of a few reasons. First of all, judging by the looks of at least some of you, you were too young to have remembered this epidemic and may not have been born. So this is a bit of a history lesson. Secondly, for those of you who are physicians but only have cared for AIDS patients after the mid-1990s, this is a reminder of what a terrible disease this was in the pre-treatment era. And, thirdly, I think this is an important illustration of the power of epidemiology and the epidemiological method to understand a new disease, to understand how it's transmitted and even prevent it without even knowing what the cause is. So we're going to try to do this both through a lecture, which I hope is going to be more or less factual, and also clips from this film "And The Band Played On." It's less factual but I think it's helpful in understanding the main events of the time. The film was released by HBO in 1993. And it was based on the book of the same name published in 1987 by Randy Schultz, who was an openly gay reporter for the San Francisco Chronicle, and very sadly died of the disease himself. The film uses actors, I think some of whom you'll recognize, playing the parts of real people. And Jim Curran is one of the real people, and I'm going to be periodically asking him to make comments as we go along. So here I've listed some of the main characters you're going to see in the film. Obviously many, many more people were really involved, and the movie, I guess, picked people for dramatic effect. The roles of some of the people, particularly Jim Curran and Don Francis, are quite distorted. Again, I think for dramatic purposes. The film starts with a scene from the intensive care unit at UCLA Hospital in the fall of 1980. This scene was of special interest to me because I trained in medicine at UCLA and had left just six years before and had spent many nights in that intensive care unit. So let me show you that first clip. [Video] >> Thank you. Thank you very much. Thank you. Thanks very much. Thank you. >> Doctor? >> Here we are. [Crowd cheering] >> No T. cell count. I've got to tell you, Dr. Gotlieb, this is weird, man, he doesn't have any. >> How can he not have any T cells? >> His immune system's gone. [Typing. Phone ringing] >> Good morning. Good morning, Dr. Gotlieb. [Knocking on door] >> Can I talk to you for a minute? I just got this in the mail from our man in LA, Dr. Shandera, got it from a Dr. Gotlieb, I think you ought to look at it right away. >> Jim, looks like there's a very weird epidemic breaking out among gay men in Los Angeles. There have been five cases of pneumocystis with no contributing disease within the past few months and already two fatalities. Plus I made calls to New York San Francisco and it seems they've had similar cases. I think this ought to go into the weekly newsletter as soon as possible. What did you do that for? >> I don't decide what goes into the newsletter. I can only recommend. But, Mary, we've got a new administration; you want to see this published so people can read it, or do you want to see it killed? Harold Jaffe: Well, the article was in fact published, but it didn't even make the cover of the MMWR on June 5th, 1981. As mentioned in the film, the article described five young previously healthy homosexual men who were treated for biopsy-proven pneumocystis pneumonia at three hospitals in Los Angeles. Two of them had already died. These cases seemed very unusual in several respects. First, virtually all previous reported cases of pneumocystis in the United States, at least in adults, were in persons with an obvious cause of immune deficiency such as an organ transplant recipient or someone receiving cancer chemotherapy. But these men did not have those risk factors. Secondly, it was a mystery as to why they were all homosexual men and, third, why were they coming from Los Angeles and possibly San Francisco and New York. So let me first ask Jim for his thoughts when this article was published. Did you cross out the title? Jim Curran: Well, as cute as the guy is, I'm not him. The context, Ronald Reagan was elected President over Jimmy Carter, and it was very high inflation and unemployment. And there was an immediate domestic hiring freeze and a travel freeze on CDC staff. We were fortunate to have a mentality at CDC where everybody wanted to work on the new problem. And this was a new problem. So there was a lot of enthusiasm among the staff. But very little money and inability to hire new people. So the context was a very dire economic environment in which to study a new problem. But the CDC was a fertile place to do it. It's always painful to watch movies. The real history behind the MMWR was that there was a clerk named Sandra Ford who was handling requests for pentamidine-isethionate, which is a second line drug to treat pneumocystis. She noted some requests which had almost always been in people with cancer, underline immune deficiency, coming from requests for people with no underlying disease in New York and California. Called attention to her supervisors in the Parasitic Disease Division, and they couldn't get any information out of New York. They were trying to hold the information back, and Dr. Gotlieb, Dr. Wayne Shandera, the EIS officer and others, accumulated the information and sent it into CDC to the Parasitic Disease Division. The title and stuff had already been decided actually by the head of the MMWR at the time, Mike Gregg, before Harold and I saw it. It was kind of delivered to us and we were asked because we had been studying hepatitis B and hepatitis B vaccine in gay men in the STD division, to talk to our contacts in the gay community. So, in fact, we actually at the time would be maybe the only part of CDC other than parts of the hepatitis division that had any programmatic context and contact with the gay community. And it should have been left in homosexual men. Harold Jaffe: Just a month later, the mystery became even more mysterious. Let me show you the next clip which depicts a CDC staff meeting. >> Okay. What we've got in Los Angeles, San Francisco and New York is a number of gay men who have been hit with a variety of opportunistic infections and really that's all we know. I've asked Don to join us because for the last three years he's been tracking hepatitis B virus in gay men and before that worked on the ebola fever epidemic in Africa. >> Thanks for joining us. >> What we've got to do is hit the phones, spread out and contact all the departments in all major metropolitan areas as usual so they can do a hospital-to-hospital search for cases. >> Make sure of the epidemiology. >> Talk to the patients, talk to doctors who may have treated those patients, friends, relatives. No question too stupid or too personal. >> Sexual relationships, too. >> Household chemical cleaning, diet. >> Could be a bad batch of street drugs. >> Pets. >> Maybe they all got the same kitty litter. >> John, I'm going to go to New York this afternoon, take a look at this disease. Can you come with me? >> Sure. >> If I knew these blotches would turn purple, I would have brought some bags to match. Here. Look at my book. When I was still human. I was the best in the business. Ask anybody. Leave it to me to get some disease nobody ever heard of. Kaposi's sarcoma. Even my doctor had to look it up. Nothing to worry about, he said. Usually happens to Italian men in their 60s who continue to live a normal life until they die of something else. Do I look like an Italian man in my 60s? Now I do. 160. Why do they make things like this that nobody can ever solve? Harold Jaffe: So just a month later, July 1981, we started to hear about young men with malignancy Kaposi's sarcoma. Some had also developed pneumocystis pneumonia and others had other forms of opportunistic infections, things like cerebral toxoplasmosis or cryptococcal meningitis. Now up until this time Kaposi's sarcoma was a very rare disease in the United States. It had been described about 100 years earlier by the dermatologists Morris Kaposi, and the disease he described was one that had a male predominance. And typically occurred in men age 70 or older. Based on cancer registry data, it was estimated that in the mid-70s there were only three or 400 cases occurring each year in the United States. When it did occur, it was most often in men from southern Europe, Italy, Greece and those of Ashkenazi Jewish ancestry. The disease that Kaposi described, which is called classical Kaposi sarcoma, looks just like this. It's a typically kind of raised plaque lesion, most often on the lower extremity and progresses very slowly. So if you read the textbooks at the time, they would say that an elderly man is more likely to die with this disease than from this disease. What was being seen, though, in these young gay men, even though pathologically or histologically -- thank you very much -- nice to have a moment of levity during this. Pathologically, you couldn't tell the difference, the two forms of the disease looked the same, but clinically they're quite different. The form that was being seen in these young gay men was much more aggressive. So here's a man with these multiple skin lesions. If you saw them in clinic one week he might have two or three. A few weeks later he might have ten or 12. And a few weeks later he might look like this. And the disease was not limited to the skin. So here's an example of a patient who has an oral lesion. These same lesions could be seen farther down in the gastrointestinal tract. They were seen in the lung and they were vascular. They could bleed. So some patients were actually bleeding out into their lungs or into their intestine and dying of the disease, which was extremely rare before the AIDS epidemic. Now there was a clue in the literature. If you look at the cancers that occur in people following organ transplant, particularly renal transplants, Kaposi's sarcoma occurs at increased frequency. In contrast to what we were seeing with these young gay men, there's no male predominance. And the most interesting feature is that there are case reports where it was possible to either taper the level of immune suppression or actually stop the drug or the disease would go into remission or sometimes even disappear. So there was clearly some very tight link between the immune system and this malignancy, although at the time we really didn't know that was. Early in the summer of 1981 we were getting case reports simply by physicians calling us and saying: I think I saw one of those cases that you're interested in. And we would very dutifully write down all the information we could by hand and stick it in a file. That was our system. And at that point we said, well, that's not really very good, is it? We really need a national surveillance system. And to do that you need a case definition. So we made one up. Notice that the disease was not called AIDS at the time. It actually had no name. We were using KSOI for Kaposi's Sarcoma Opportunistic Infection. The case definition that we made up said that we wanted to know about individuals who had proven Kaposi's sarcoma or one of about a dozen severe opportunistic infections. We weren't interested in this form of Kaposi's sarcoma in the elderly. So we said patients less than 60. And, of course, we excluded anyone who had a known form of immunosuppression. So we made this definition available to major teaching hospitals, oncologists, infectious disease specialists and health departments. We said if you see a case like this please report it to your health department who will in turn report it to CDC. So let me ask Jim at this point what your thoughts were kind of in the middle of the summer of '81. Jim Curran: I think in retrospect, one of the most important things that was done was the development of this case definition, which was highly, highly, highly specific. We knew it was insensitive. And we made a bunch of iceberg slides and sent them around saying that this was only the tip of the iceberg. But these conditions were so uncommon and they required, in the case of pneumocystis, open lung biopsy at the time to make a diagnosis. It required a pathologic diagnosis for both Kaposi's sarcoma and the infections. And they were so rare in the developed countries that you could be sure that this was going to be part of this new epidemic. And that allowed us to determine whether a new case was part of it or not part of it, whether it was occurring only in gay men, was it occurring only in New York and California, and ultimately led to the definition -- I mean, the determination of the epidemiologic patterns which led to prevention recommendations and convinced virologists and others that this was caused by a blood-borne and sexually transmitted virus. Harold Jaffe: Let's move ahead to a little bit later in the summer of 1981. [Video] >> Do you have many gay friends? >> Not too many, no. Two doctors I know in medical school, I still stay in touch with them. >> Are they a couple? >> Yes, actually. 15 years. >> Kiko -- Kiko is my lover -- we have a wide circle of friends and most of them are in relationships, or want to be in relationships. >> So what are you saying? >> Lots of men go to these bathhouses, but there are tens of thousands of gay men in this city, maybe a couple hundred thousand, cops, and waiters, and teachers and lawyers and ditch diggers and athletes. >> Don't talk loud, so they can't hear you down the block. >> I'm sorry. I don't mean to lecture. I just don't want you to come away from your tour of the bathhouses thinking that's how all gay men live. >> Last night we lost another one. In three weeks this handsome young, guy turns into the elephant man. We found out it was caused by some rare parasite that only sheep get. So I called a vet to ask what they do when sheep get it. They shoot them. >> Good luck. Thank you. >> Hi, Bill. Madrid Department of Public Health. >> Let me see if I can find the boss. [Music] >> Those two guys there, are they strangers? >> Maybe. Probably. >> They just met and now they're going to go in -- >> Right. >> It's interesting. >> Listen to me. Imagine yourself in a place like this. It's only filled with women, I mean, really beautiful women. Imagine one of those Penthouse women, she wants to go into that little room with you, nothing between you but a little towel, are you going to tell me you wouldn't go into that little, consider dropping that towel? Yeah, I know men would give up food for it. >> How are you? >> Good. >> [Inaudible] from the Centers for Disease Control. >> So what's the problem? >> There may be some kind of an epidemic spreading in the gay community, and I'd like to just come in and have a look around. >> I'm sorry, that's impossible. We have to protect the confidentiality of our clients. >> I know, but, Eddie, you know I speak on behalf of the Gay Liberation Committee, the city council, the state assembly, I can tell you without fear of contradiction you are regarded second only to Abe Lincoln as a citizen that would fight to the death to protect civil liberties. So let's cut the crap, it's 10:00 in the morning for God's sake. Let us in. >> Thelma, only for you. >> Thank you. Thanks, Eddie. >> How many men come here a night? >> Hundreds, every night of the week. Some bathhouses more than a thousand. >> What's this? >> Poppers. They're a quick, cheap high. Harold Jaffe: You probably recognize some of the actors there, Serena McKellen and Lily Tomlin and Phil Collins. The actor who played me is a person named Charles Martin Smith, whose previous big role was Terry the Toad in American Graffiti. So that probably tells you everything you need to know. This is based on a visit that Bill Darrow, our research sociologist, who you will see later in the film, and I made to a bathhouse in Atlanta, the club baths. The reason we went was we had learned from talking to some of the early cases that many had visited bathhouses and many of them had used nitrate inhalants and we wanted to learn more about it. We got permission from the owner. We turned up one night. We were fairly obvious because we were the only ones wearing clothes. We were sitting there in our government blue blazers at a table and saying, excuse me, I wonder if I could talk to you. Quite amazingly, almost all these men were perfectly happy to sit down and talk to us. And, as I said, we were particularly interested in learning about the use of these inhalants. You can see some of these in some of these labeled bottles. Locker room is a good name, because they smell like sweat socks. You could buy these in the bathhouse. In fact, it was popper night when we went. You could get them for a discount. We also discovered, though, that you could buy them in bars and bookstores in these much more mysterious looking unlabeled brown bottles. And we wondered: What's in this stuff? In theory, it should be amyl butyl or isobutyl nitrite used to enhance gay sex, but we really didn't know. So we bought some of these and brought them back to Atlanta, had them tested chemically to look for a contaminant. We didn't find any. We even had them used in animal experiments where they were aerosolized to see whether they would suppress the immune system of, I think, rats. I'm not sure. And they didn't. So it didn't entirely exclude the possibility that these played a role. But I think it made it a little less likely. I think maybe we were thinking gosh, this is it, we'll get rid of this stuff. End of epidemic, we'll all be heroes. But it unfortunately didn't turn out to be quite that easy. Let me ask Jim, at this point in time, did you think it was likely there was an environmental cause of the disease, or did you think it was more likely it was infectious? Jim Curran: I had been coming from the STD world and we had been working on hepatitis B vaccine trials. And from the beginning this suspiciously looked a little like hepatitis B, a lot like hepatitis B. So that always, I think, was for most of us was most likely that it was due to a sexually transmitted agent. Whether it was some sort of mutant cytomegaly virus or some kind of concatenate of agents. I think most of us believed that was the most likely cause. It would have been a thrill and a wonderful thing for the world if something as simple as poppers could have been it and we could have turned into Carrie Nation and gone through and broken all the bottles in the country and saved 30 million lives. But it wasn't to be. Harold Jaffe: Let's move on now to a CDC in the early autumn of 1981. [Typing] >> What do we think, what do we know, what can we prove. >> Zip. >> Only gays. >> Think but can't prove. >> Only males. >> Think but can't prove. >> Semen depositors. It's in the semen, unless there's something specifically unusual about this disease, it shouldn't make a difference where the semen is deposited, whether in the anus or in the vagina, which could mean that women will be getting it also. >> Good point. Focus on that. >> All we know so far is that the immune system stops functioning completely, all cases. >> No but can't prove. >> What we have here looks more like a sexually transmitted disease than syphilis does. >> Think or prove? >> I can't prove that the sun isn't going to turn into a bran muffin next Tuesday. After 20 years of doing this I know what I know. >> That's not what I'm talking about. >> It's pure supposition, but it's more than strong enough to justify a definitive study. >> I agree with Phil. >> Single infectious agent with high probability of sexual transmission. >> Viral or bacterial? >> Just think and prove it's viral, but it's only a guess. >> Guess. >> Let's assume it is a virus. Now, the question is, is it one that we already know that has become lethal, or is this some kind of brand new virus we haven't seen before? >> Here's a stat to chew on. In seven months the number of cases jump from five to 152 in 15 states. >> Seven months. >> But the spooky part is that so far the mortality rate has been 40 percent. >> 40 percent? >> According to the doctors taking care of these patients the mortality rate could ultimately turn out to be 100 percent. >> 100 percent. >> My God. >> Let's set up a case control study based on the premise it's sexually transmitted. Harold Jaffe: Having worked for Jim Curran for many years I can say with great confidence he never said think or prove even once, did you? I don't think so. But anyway we did the case control study. Selecting the cases was pretty straightforward. We decided that we would try to interview every living reported case in one of four cities in person that had to be homosexual men with either pneumocystis or Kaposi's sarcoma or both. But it wasn't so obvious how to select the controls. Did we want men and women? Just men? Heterosexual men? Homosexual men? Both? We finally decided that we would recruit apparently healthy homosexual men who were within five years of the age of the case that they were matched with. They had to be of the same race and live in the same city. But then how do you do that? So we spent a long time thinking about the best way to do it. And I'm not sure we ever came up with a good solution. First we thought okay we'll ask the cases, the names of their friends who are not their sex partners. And less than half of them could do that, which was probably a hint right there. So then we decided we would go a different route and we would go, first of all, to the private practices of physicians who saw mainly gay male patients in their cities and ask them to recruit for us. And secondly we would go to public STD clinics that primarily served gay men. Now, we knew there was an obvious bias in this, because by definition a man going to an STD clinic must be pretty sexually active. We figured we know that. We'll have to take it into account. But it was a relatively easy way to get controls relatively quickly. As Jim indicated in the film that was set up with the idea that we were probably looking for sexually transmitted disease, and obviously the fact that it was occurring in a number of highly sexually active gay men was consistent. But because these men frequently were using drugs, not just the nitrite inhalants but a variety of street drugs we couldn't rule that out. As I mentioned, we interviewed cases and controls in person as is shown in the next clip. [Video] >> Stick around here. Coming right back. [Bell] >> Dr. Mary Guinan, please. >> I'm a friend of Dr. Konig's. >> Your name? >> You can tell him. He has no idea who you are and we'll pretend we never heard of you. >> You guys ahead of me? >> You can go ahead. We got nothing to do except go to a Halloween party, during rehearsal. >> I know. >> [Inaudible], but I happen to think you're a genius. >> Double genius as a director and choreographer. >> You? >> Robbie Campbell. Self-appointed KS poster boy. You look surprised. >> No. Curious, maybe. >> If the gay community doesn't start raising hell, do you think Reagan's going to do a damn thing? >> I wish I had your courage. >> Courage. No. I'm scared to death. I just have this absurd determination to live, don't you? [Knocking on door] >> It's open. >> Dr. Guinan? >> Yes. >> I expected the neighborhood, the hotel, this room even, but I think it would take Filini to cast such a beautiful, young woman in a sweat suit as the doctor I'm supposed to reveal my most intimate sexual eccentricities to. >> I'm Mary Guinan. The reason for the sweat suit is somebody stole every piece of clothing I brought with me from the laundromat this morning. Would you mind signing these two consent forms? One is for the questionnaire and one is for the specimens I need to collect. >> What specimens? >> Blood, urine, a swab from the inside of your mouth and another from your rectum. In this study, some had the disease and some like you have no symptoms. >> I really don't mind if you know all this about me. I'm just not too sure I want to know. Is there a name yet for this disease? >> The gay press calls it gay pneumonia or gay cancer and the straight press doesn't mention it at all. >> I was hung up in traffic coming over here. Gay Halloween parade was on. Have you seen it? >> I didn't know they had one. >> Yeah, they do. It's really pretty amazing. [Music] >> Party's over. Harold Jaffe: Well, I want to know why Richard Gere didn't play me. [Laughter] [Applause] That sounds like a vote of support, or at least I'll take it that way. Well, we didn't interview Richard Gere and Mary Guinan only had her underwear stolen, not all of her clothes. But the rest of this is pretty realistic. We did interview these men in our government rate hotel rooms, which were not very luxurious. We did get 25 bucks in San Francisco. We did get funny looks from the desk clerks about why these young men were coming up to see the CDC doctors. But it was remarkable that these men, once we started talking, really were quite open and willing to talk about what had been going on in their lives. Think about it. What if I came to you now and said you know I don't mean to bother you but I'm from the federal government and I'm going to ask you everything I can think of about your sex life, drug use and anything else, I'm not sure you'd be that happy to talk to me. But here, these men were really scared, appropriately so. Many of them had friends who had died or were sick, and they wanted to know what was going on. They wanted to know if they were at risk, maybe what they could do to help themselves. So they were remarkably open in talking to us about what they had been doing. So these next few slides come from the original case control study. First of all, to show you where the patients came from, the four cities I mentioned. The majority of cases, three-quarters, were white, which fit the demographic profile at the time. And let me go back here. Here's some of the variables comparing the patients seen on the left with the two control groups. Remember the clinic control group comes from an STD clinic and the others come from a private medical practice. So in terms of history of sexually transmitted diseases, the cases were more likely to have gonorrhea or syphilis than either of the control groups. They also used more different street drugs and the use of poppers the nitrite inhalants, was essentially universal in both groups. Looking in more detail at some of the sexual activity differences, here we see the median number of sex partners for the cases was more than twice as many for either control group. Again, one of those control groups comes from a public STD clinic. The cases had a higher proportion of partners from bathhouses and they were more likely to start having sex at a younger age. In a mltivariate analysis, which I'm not showing you here, these same sexual variables seem to be the most important. But when we published the study we were fairly cautious. We said we thought the occurrence of Kaposi's sarcoma and pneumocystis pneumonia in these homosexual men is associated with certain aspects of their lifestyle. We went on to say that sexual activity seemed to be the biggest difference. But because drug use was so highly correlated, so related to sexual activity, we really could not rule out a possible role for those drugs. Now, the next clip doesn't come from the film, it actually comes from a national broadcast, NBC news. I wanted to show it to you because it shows you how the case control study was presented in the press and it also shows you the real Bobbie Campbell and the young or younger Jim Curran, who looks almost the same as Jim Curran today. [Video] >> Scientists at the National Centers for Disease Control in Atlanta today released the results of a study which shows that the lifestyle of some male homosexuals has triggered an epidemic of a rare form of cancer. Robert Bazell now in Atlanta. >> Bobbie Campbell of San Francisco and Billy Walker of New York both suffer from a mysterious newly discovered disease which affects mostly homosexual men but has also been found in heterosexual men and women. The condition severely weakens the body's ability to fight disease. Many victims get a rare form of cancer called Kaposi's sarcoma, others get an infection known as pneumocystis pneumonia. Researchers know of 413 people who have contracted the condition in the past year. One-third have died and none have been cured. >> Death didn't scare me. It was living with this for a long time. That's more frightening than death. >> Investigators have examined the habits of homosexuals for clues. >> I was in the fast lane at one time in terms of the way I live my life. And now I'm not. >> The best guess is that some infectious agent is causing it. Today, researchers here at the National Centers for Disease Control say they have found several cases where people who had been sex partners both had the condition. Scientists say this probably means they are dealing with some new deadly sexually transmitted disease. The investigators see this as a serious public health problem. >> From an epidemic point of view there have been more deaths from Kaposi's sarcoma and pneumocystis pneumonia than have occurred with all the cases of toxic shock syndrome and the Philadelphia outbreak of Legionnaire's disease combined. >> Researchers are now studying blood and other samples from the victims trying to learn what is causing the disease. So far they have had no luck. Robert Bazell, NBC News, Atlanta. Harold Jaffe: Jim, other than any comments about your youthful appearance, is there anything else you'd like to say about what you thought was going on at the end of the case controlled study? Jim Curran: Well, first of all, Harold Jaffee and Martha Rogers, Kelon Troy, many people were the leaders in the case control study and put together a rather complex study design and implemented it to include 75 or 80 percent of living gay men in the United States and published it rapidly. So that was quite a feat. I want to just give you a couple other contexts. One is we knew that the controls were matched. And by matched, we meant that they were matched for certain characteristics. They were matched by sexual orientation. They were matched by age, within three years. They were matched by the city where they lived at the onset of the case's symptoms, and they were matched by race. All of the cases -- all of the controls were interviewed by the same person that the case was interviewed by to try to minimize to some extent interview bias. And we thought that we would be overmatching by picking people who were symptomatic with STD symptoms and that would minimize the chance of finding a sexually transmitted variable. In retrospect, of course, many of the controls were almost certainly infected with HIV themselves leading to a lot more overmatching. So that made it even more remarkable that sexual variables were the most important ones. But in retrospect, that's not remarkable at all, because when any new, rare epidemic occurs, and this was rare at one time in gay men, then the ones most likely to catch it are going to be the ones with the extraordinary number of exposures. And that's how it was in the gay community in the mid-'70s, if you caught HIV. You were most likely from San Francisco and New York, most likely going to bathhouses. By the time the virus was discovered, however, half a million gay men were already infected, and the disease became endemic in the gay community and exposure became much, much more frequent and likely. The last thing I'd like to say is that people didn't believe in this epidemic then. I mean, gay men who didn't live in New York and California didn't believe in the epidemic. Even gay men who did live in New York and California thought it occurred to other people, because it was relatively infrequent. At the time of the case controlled study, maybe the cases were occurring in 15 states. That left something like 35 states where they weren't occurring. The Reagan Administration knew about this, of course. I interviewed only one case -- Harold sent me to New York. So I was coordinating the New York work with EIS officers there. But there was one case that wanted to be interviewed by the head of the task force. That was the managing director of the Joffrey Ballet. A very busy man. He was so busy because the next week -- he had pneumocystis pneumonia once. He was going to be hosting Nancy Reagan for the opening of the Joffrey Ballet in which her son, Michael, was a ballet dancer. Harold Jaffe: Ron. Jim Curran: Ron -- Michael. Sorry. Wrong son, the right wing one. Ron was the ballet dancer. He did that and then the next, couple days later he was back in Bellevue Hospital with his final fatal case of pneumocystis. We know at least Nancy Reagan had some exposure to this five or six years before the president spoke about it openly. Harold Jaffe: The last bit of the newscast, it was mentioned that some of the cases were thought to perhaps be sexual partners. This information came to us from Dr. David Auerbach, who was a CDC medical officer assigned to Los Angeles County. Through his contacts in the gay community in Los Angeles he had learned that this was the case. And he wanted to interview these men to verify this. But he had never actually done this kind of work before and wanted some help. So we were able to send out Bill Darrow, our research sociologist, who had been previously a syphilis public health investigator, had done a lot of this, to help David out with the interviews. So the answer to the question about sexual relationships came just a few days later, as shown here. [Video] >> Jim, I got a call from LA. >> Wait, I am on the phone. >> I got a call from LA. This could be the first real lead to prove this thing is sexually transmitted. My plane leaves in 40 minutes. >> We don't have the budget. >> Don't sweat it, I'll front the money. You'll pay me back. >> If you think you have definitive proof it was brought in by a UFO, please send it in to us. Thank you. >> You don't know a man from New York with a French Canadian accent, very handsome, sheik? >> I don't think so. I very seldom -- wait a minute. This might help somebody else, right? >> Right. >> Of course I know him, from the bathhouses. I never had sex with him. But almost everybody I know has or wants to. >> Fine. Then he gave me hepatitis, so it's quite possible he gave me this, too. >> The moment I first spied him at the tubs, I was so crazy about him. He was so gorgeous. >> Can you just give me his phone number, address or any way I can get ahold of him? >> All I know, he's French Canadian. He's an airline steward based in New York. I don't even know which airline. >> That's okay. If you can just give me his name. >> I called him Dougie, nickname. >> And his full name? [Phone ringing] >> Hi, Mary. >> Hi. You back in town. >> Just for the night. I'm probably nuts, but I'm on my way to New York to try to find a very sexually active French Canadian airline steward. >> Gatan Dugas. Bill Darrow. >> Hello. >> Nice to meet you. >> Nice to meet you. >> Sit down. Take all the time you need. >> Thank you. >> Thank you. >> Thanks very much for coming in. >> Well, I'm very flattered to be asked. Although I have no idea what I'm here to discuss. Would it disturb you if I smoke? >> If you need to, go ahead. Mr. Dugas, did you have sex with any of these people? >> Is that what I'm here for, to talk about my beautiful lovers? Now I am flattered. If you don't mind my saying, I can't possibly imagine why you would be interested. >> We've been finding substantial evidence to suggest that one of the ways this disease may be transmitted is sexually. >> Wait a minute. All I have is skin cancer which is not contagious. And you know it. >> No one is accusing you of anything. We just need to know as much as we can. >> You know, I adore doctors, but I must say if this is an epidemic, this gay plague thing, it's your fault for not stopping it. It's not mine. >> That's exactly what we're trying to do. And we need everybody's help. So if you could give me the names and addresses of all your lovers and start with the people on this list, please. >> My friend, we're talking about thousands of men all over the world, whose faces I cannot even remember and you want names. >> As many as you can remember would help. >> My book's in my apartment. Call me. >> What's the number? >> I'll call you. >> Listen: Help me, don't help me, that's up to you. But don't fuck with me. I'm not playing games here. >> Not before six, and not after 6:30. >> Thank you. >> And remember something: Whatever it is, if I got it, someone gave it to me. >> All right. This is how it breaks down. This is Patient 0, an airline steward from New York and the starting point of this particular group. Now, these are the eight with whom he had direct sexual contact, these four in New York. These four in LA. This is LA 3. He had sex with LA 2. This man from Florida who in turn had sex with this Florida man. Two from Georgia, one from Texas and so on. In all, 40 cases in 10 cities are verifiably linked to Patient 0 which strongly suggests this is a sexually transmitted disease. >> That's great. Absolutely terrific work. >> Bill, that is the first sign of real proof. >> Good job. Harold Jaffe: I recently came across an interview that Bill Darrow gave about this investigation. And he said, well, these three men, they never met, they never had sex, yet they named the same guy in New York. I actually dropped my pen. Auerbach's mouth was just hanging open. He practically fell off of his chair. So these are the slides that Bill Darrow showed us in Atlanta. You can see that Gatan Dugas the out-of-California KS case, is linking together these two clusters of cases in Southern California. And here he's linking together cases from Los Angeles to New York City and then the slide that you saw in the film where he's in the center of this cluster of 40 cases, sexually linked between 10 North American cities. Now when we published this in a journal, we had a legend on it. And Gatan Dugas was indicated as 0 and there was one, two, three, four, five, and so on. When the American press saw this, they said Patient 0, he's the guy who started it, he's the guy who brought this disease, whatever it was, to North America, which, of course, was never our intent, and we have no proof that that was true. On the other hand, knowing what we know now that this is a sexually transmitted disease, it wouldn't take that many people like Gatan Dugas, people who were very sexually active, very mobile, going to bathhouses all over North America, somebody like that actually could have spread a lot of infection relatively quickly. And I believe that two other members of the cluster were also flight attendants. So, Jim, I wonder at the conclusion of the presentation by Bill Darrow what you were thinking. Jim Curran: Well, you know, this was very convincing to us who didn't much need convincing when it was published in the American Journal of Medicine and the MMWR, they did an analysis of what if five to 10 percent of men in the United States were gay and they had -- how many had -- what is the likelihood that these -- this was like 40 percent of the cases that had been diagnosed in the United States that were alive in gay men. So what is the chance they would be linked in a cluster? And I think one of our statisticians said the chance was one times 10 to the minus 12th. But there's still an awful lot of people that didn't want to believe that this was related to sexual transmission. Because the implications of it or the fact that it could be caused by a virus was probably too great for people to deal with. But it was a very important investigation for that reason. Now, I've looked back on these things, and I'd like to think what we know about the pathogenesis of HIV and the transmission of HIV, and I think of this cluster and I also think of the cluster that we saw in the dentist, Kimberly Bergalis case, and the fact that we didn't see things in other healthcare professionals. And it makes me think we had to have with this cluster and what we had to have in particular with the dentist case is a lot of highly pathogenic, high viral load early cases with short periods of time between infection and disease in order to do this. If the average case here went from 10 years after transmission, it would be extremely unlikely that you could link something like this up. So you had to have probably, in retrospect, high viral loads and high pathogenic titers. Harold Jaffe: I think as all of you who have ever worked at CDC, people at CDC walk around with these little green lab notebooks. I actually have no idea why. For those of you who will see the film "Contagion" that comes out in a few weeks, I think one of the key lead characters Kate Winslet, who plays the epidemiologist, has one. So I had one, even before Kate Winslet. So I took this photo of a page from my notebook. I think the date is November 1982. And it's a phone call that I received from Dr. Art Ammann, who is a well-known pediatric immunologist at UC San Francisco, who wrote the book, literally, on congenital immunodeficiency. And what he told me over the phone was that there was a child born there in March of 1981 who had RH disease, incompatibility of blood type between the mother and the child, causing a severe anemia in the newborn requiring six exchange transfusions. The child left the hospital but then began developing a whole series of complications, recurrent infections, fat malabsorption and immunologic abnormalities, opportunistic infection with microbacterium and avium. So Dr. Ammann did a very extensive immunologic workup on this child and said: This does not fit with any known form of congenital immunodeficiency. It looks like AIDS, except no one's ever described AIDS in children, how could that be. He also learned that all the blood from this child had been received from Irwin Memorial Blood Bank. This next clip will show you that investigation. This clip I think is the least accurate of the ones I've shown you. Art Ammann is morphed into a woman played by Angelica Houston. You're going to hear a number of speeches that were never made. You'll hear the term "GRID", which stood for Gay Related Immune Deficiency which was the term we never used at CDC. [Video] [Baby crying] >> Harold Jaffe, CDC. [Baby crying] >> Hi. >> How do you do? >> Harold Jaffe. >> So it's true? >> He was born here 20 months ago. >> An RH baby. >> Within a week his entire blood volume had been replaced six times. Now he has Zostera, practically zero T cell count, more opportunistic disease than we know what to do with. >> And he had 13 donors? >> All from Irwin Memorial. That's all I could find out. They keep a lid on the place so tight it's like the Pentagon. So forget about getting a list of donors from them. >> The first irrefutable case caused by transfusions and these people are stonewalling us. I know what we need. Somebody just to scare the hell out of them. >> Only Attila the Hun could. >> Selma Dritz. [Laughing] >> I got it. But there's one problem, two problems. I'm freezing, that's one problem. Let's get some coffee. One of the donors died from the disease two months ago. >> We can't prove that. >> What do you mean we can't prove it? How can we not prove it? >> He was one of the richest, most socially prominent families in town. He swore to his dying breath he wasn't gay. >> What's the difference what he said? If somebody dies from it you can't mistake it for whooping cough. >> According to his doctor he died from encephalitis. It's on his death certificate. >> Talk to the doctor. >> Get him to say what, he lied? >> Somewhere in this town there's got to be somebody that -- a gay man he had sex with or what about his family, do they know? >> My brother wasn't gay. And I can assure you no matter how hard you search you're not going to find one shred of evidence to suggest the contrary. He was on the board of several corporations. He was the chairman of the fundraising community for Saint Patrick's. He was meticulous. He was meticulous in concealing his other life, even from me. >> Excuse me. I would like to remind everyone -- I'd like to remind everyone that these are not regulations. These are not regulations from the CDC. This is a workshop where every agency connected to the blood industry can evaluate the information that the CDC has found and together we are hoping to be able to arrive at some course of action. >> One option is to establish guidelines to keep people who are at high risk from donating blood to begin with. >> Banning homosexuals from giving blood won't protect the blood supply. What it will do is stigmatize them. Reminds me of blood banks rejecting donations from blacks for fear of syphilis. >> Have you any idea of the civil rights implications -- >> Civil rights, my ass. My son is a hemophiliac. And if homosexuals are infecting the blood supply, why not keep them from becoming donors? >> What do mean the entire gay community? Then what, separate drinking fountains, one for gays and one for humans. >> Don't start that gay rights crap with me. There's 20,000 hemophiliacs in this country and GRID has become the second leading cause of death amongst them. We have rights, too, and one of them is the right to stay alive. >> I know that we're dealing with a very complex and highly emotional issue, but it would help for all -- >> How can you expect us to be unemotional, when at least one person is dying every day from a disease that doesn't even have a name. Now, if the CDC can't bother to come up with a name, at least it should stop the media from calling it GRID. We have enough people hating gays without having the entire stigma of this disease placed on us. Especially since it has been shown that this disease is no longer merely gay-related. Now, I make a motion to officially call this disease Acquired Immune Deficiency Syndrome, or AIDS. >> Questions or discussions on this issue, please? >> I second it. >> All right. All in favor of Dr. Valor's motion? Motion's carried. >> The FDA Advisory Panel to the Blood Banks feels that the evidence for nearly all of this is inferential. The CD's evidence of blood transmission cannot be warranted until the CDC shows definitively that an infectious agent causes this disease. Nothing about it even exists in the peer reviewed medical literature. Not one case. Evidence of such blood transmission is lacking. >> May I point out that the blood industry is under the jurisdiction of the FDA and the FDA, according to Dr. Bovey, does not acknowledge that there's an epidemic because there's no evidence that it's a blood-borne disease. >> Suppose, for example, the small amount of blood by some unlikely chance is contaminated, with no tests to find out which blood is safe and which isn't, what do you suggest we do? Destroy the entire blood supply in America, because some of it may or may not be contaminated? >> No, no. Well, in fact, testing -- testing is the second option that we should discuss. Now, we at the CDC have found, we've found that the hepatitis B test is 88 percent effective in identifying patients with this disease. >> Is the CDC seriously suggesting that the blood industry spend $100 million a year to use a test for the wrong disease because we've had a handful of a transfusion fatalities and eight dead hemophiliacs. >> How many dead hemophiliacs do you need? How many people have to die to make it cost efficient for you people to do something about it? 100? A thousand? Give us a number so we won't annoy you again until the amount of money you begin spending on lawsuits makes it more profitable for you to save people than to kill them! >> The disease called AIDS, Acquired Immune Deficiency Syndrome, sounds less deadly, more like a diet pill. >> Medical researchers are warning... the risk of contracting the disease AIDS. >> Henry Penia, who has AIDS, got into a minor traffic accident. So police called the hazardous materials team. >> The impact on blood banks could be disastrous. Harold Jaffe: As I mentioned, this scene isn't very factually correct. For those who might have known her, Selma Dritz was a very nice lady nothing like portrayed in the movie. AIDS was not named at this meeting. And Don Francis, for those who knew him, recall that he made many passionate speeches during his career, but he didn't make that particular one. Jim, you looked very nervous at the end of that meeting. Maybe you can tell us why. Jim Curran: The events, as I remember them, is the very careful investigation, we had a few cases of what looked like transfusion-associated AIDS. And indeed the blood banks were hiding behind confidentiality issues in New York and California in investigating them. The only one really that was investigated very thoroughly initially was the one that Harold was involved with in San Francisco with the baby. When the three cases occurred in patients with hemophilia, young men who had received essentially untreated factor concentrates pulled from tens of thousands of blood donors each year, it was a canary in the coal mine type of experience in the sense that if anybody was going to get a new virus, these men were likely to get it. And that really convinced most people that this was new. Now, there were two meetings. There was a meeting, a broad meeting of the blood banking community, and there were smaller -- it was a smaller meeting in HHS. And the blood banking community, it is really true that the blood banking industry and the blood banking leaders were quite resistant to any change or any screening or any questioning, and Dr. Bovee, it was not his most proud moment. And he had, unfortunately, worse moments on behalf of the American Association of Blood Banks going forward. But there was really very little reaction from the gay community. We had pretty good contacts with many people in the gay community. And I think they were more or less convinced that this was really true and were not standing up in public and screaming civil rights and things like this at this blood banking meeting. The other thing about the name AIDS itself, is a lot of people had been looking for a name. And a lot of us had talked to several people. There was a guy named -- several doctors in New York and a lot of us at CDC thought Acquired Immune Deficiency Syndrome was accurate and also had an acronym which might live a while and would be something that could be used. So there was a meeting in Washington of blood banking officials. It was kind of a semi public meeting that Jeff Copeland chaired. And we arranged for Don Armstrong, who was the head of ID at Memorial Sloan Kettering, to make a suggestion to the PHS that the term AIDS be used. So there was a guy, it wasn't this guy, it wasn't at that meeting, and it was kind of prearranged by CDC to use the term AIDS. What else can I say about this meeting? That's about it. I think what we were nervous about mostly is there wasn't any consensus at this meeting. And it was a highly public meeting quoted in the press and everywhere else. And it was quite clear that the blood banks and the CDC were at odds. The National Heart and Lung Blood Institute was also at odds and basically what do a bunch of infectious disease epidemiologists know about blood banking anyway. Harold Jaffe: Well, fortunately, discussions that were held more in private over the next few months were more productive. And just three months later, in March of 1983, the U.S. Public Health Service issued the first guidelines for prevention of the disease that was known as AIDS at that time. But, first of all, the guidelines said that persons at increased risk of the disease those were signs and symptoms, their sex partners, sexually active gay and bisexual men with multiple partners, Haitian entrance into the U.S. which was contentious at the time, all we knew was that Haitians living in Miami and New York City were getting the disease. We knew that the disease was occurring in Haiti itself. We actually did a case controlled study trying to figure out what the risk factors were and we didn't come up with anything. So we said for public health purpose we're going to say that Haitians should not donate blood. Now, this clearly led to a lot of discrimination in the Haitian American community, which was undoubtedly not what we wanted. But at the time we didn't really have a choice, or at least I didn't think we did. Intravenous drug users were getting the disease, patients with hemophilia. And then the recommendations went on to say to avoid getting the disease, avoid sexual contact with persons known or suspected to have it. But having multiple partners increases the risk. In here it says it's a temporary measure, but many of you know it's still a requirement in the United States that blood bankers not accept donations from homosexual men. So despite the denial that went on at that meeting, these guidelines came out, which I think even in retrospect were essentially correct. Jim, can you tell us anything what went on between that meeting and the formulation of the guidelines? Jim Curran: There was increasing consensus that this was likely to be caused by infectious agent. And increasing concern that it was present in the blood supply. So that drove the consensus recommendations, and we were able to have these recommendations come from all public health service agencies, but also be endorsed simultaneously by the American Association of Blood Banks, American Red Cross, National Gay Task Force and many -- American Association of Physicians for Human Rights. So we had AMA, lots of groups like this. So I think there was in general quite a proud moment for CDC that these recommendations could be promulgated well before the cause of the syndrome was discovered. Harold Jaffe: In fact, the first publication describing what we now know as HIV was made in May of 1983 by Luc Montagnier and his colleagues in Paris, that was recognized by the 2008 Nobel Prize in medicine. And it was another year before Robert Gallo and his colleagues at the NCI really established that the virus was the cause of AIDS. And as I mentioned, I think this is rally an important illustration of the power of the epidemiologic method to understand a new disease. Now, I'd like to say that the story of AIDS ended in 1983, but if it had, you wouldn't be here. So let me just give you a snapshot of the next few years. So here's May of 1985, the first 10,000 cases mainly in New York, San Francisco, Los Angeles, Miami. 1989, here's the first 100,000 cases, large numbers in places like Puerto Rico, Houston, Dallas, Seattle, Chicago, Atlanta. And then by the end of 1995, the first half million cases. So at this point really every major metropolitan area in the United States was reporting cases. And finally, our most recent data, from June of 2010, with more than a million reported cases and more than half a million deaths. These numbers are important. But I don't think they give you maybe the most important part which is the human face of the epidemic. To do this I'm going to show you the very last clip of the film, which includes a number of people who had the disease or were advocates for the cause. I know who a lot of them are but not all of them. But I'll say the ones I know anyway. [Video] Yesterday you came to lift me up as light as straw and brittle as a bird. Today I weigh less than a shadow on the wall, just one more whisper of a voice unheard. Tomorrow leave the windows open as fear grows please hold me in your arms. Won't you help me if you can to shake this anger. I need your gentle hands to keep me calm, 'cause I never thought I'd lose. I only thought I'd win. And never dreamed I'd feel this fire beneath my skin. I can't believe you love me. I never thought you'd come. I guess I misjudged love between a father and his son. Things we never said come together. The hidden truth no longer haunting me. Tonight we touched on the things that were never spoken. That kind of understanding sets me free. Because I never thought I'd lose. Only thought I'd win. I never dreamed I'd feel this fire beneath my skin. I can't believe you love me. I never thought you'd come. I guess I misjudged love between a father and his son. Things we never said come together. The hidden truth no longer haunting me. Tonight we touched on things that were never spoken. That kind of understanding sets me free. 'Cause I never thought I'd lose. Only thought I'd win. I never dreamed I'd feel this fire beneath my skin. I can't believe you love me. Never thought it would come. I guess I misjudged love between a father and his son. Harold Jaffe: Thank you. [Applause] Booker Daniels: I'll try to keep my composure. We have ten minutes for questions for the panelists. If you would, form a line in the center of the aisle and we'll direct some questions. Member from the Audience: Since the theme of this involves a little bit of Hollywood, if you could write the end of the script, what would it look like? Jim Curran: As a result of a safe and effective vaccine and curative therapy, in the year 2000 and blank, HIV was eliminated from 90 percent of the countries on earth with the promise of eradication not too far behind. [Applause] Member from the Audience: Thank you for the presentation. I actually was one of those people who -- I'm not that young. But I do -- I was young enough not to pay that much attention in the early '80s. You mentioned a little bit about once or twice about the movie "Contagion" that is coming out. We know that Hollywood dramatizes things for effect as we saw in this presentation. How can we as public health workers, not just in respect to HIV, but in respect to any type of infectious disease, how can we then communicate with communities who are going to be going to see this motion picture to help them understand what it is that we do and what they can do? Harold Jaffe: I haven't seen the film myself. Although, several people from our office have. And I think it's some horrible disease that kills just about everybody. I think the message from public health is that's why we're here. I mean, there is no such disease. Thank goodness. But if there ever were, that's why we're here. So I think that's the message that CDC would want to get across. Jim Curran: It's hard -- the problem with this movie for Harold and I and other people who are at CDC we're actually real people. And we have real names and then we see ourselves and we see all the changes and all this sort of thing. And so it's hard for us and our friends and family to look at this and get beyond the personal part of it. But if you step back from this, if you look at And The Band Played On as a movie, in general I think you see in CDC and parts of the country reacting quite positively and doing the best we could under the circumstances to combat the epidemic. And this was occurring in somewhat of a sea of denial and there was some neglect. Probably wasn't quite as blatant as Randy Schultz in the movie portrayed it. But it certainly was there. There was a lot of denial and neglect on the part of many, many people. I think in general, names aside and who did what aside, the CDC, staff and faculty and people we worked with and the people we worked with in the gay community, and the people we worked with who are HIV positive, were extremely courageous and worked very well together to get to the bottom of the problem. So if the public sees this and all they see is CDC working hard with the gay community about a disease which was a really, really horrible disease, with an unknown cause, people getting needle sticks when they were investigating cases, not knowing what it meant, not knowing what their future was, but still having the courage to go do it, I think in a sense it's public health at its best. They could have used somebody more handsome, though. Member from the Audience: Just one question. You remarked about perhaps being more a pathogenic virus early on. Couldn't it also be the phenomenon of a lot of acute infection going around where the guys were very recently infected and still very sexually active in those houses as opposed to it being more pathogenic? Jim Curran: I think the fact that you could link up a number of cases to somebody who had sexual contact, all of whom had sexual contact with somebody reasonably recently. In a lot of these cases that had contact with Gatan Dugas, just like the dentist case, people were getting sick and getting AIDS within a couple of years, within three years. So you had to have a cluster of people with a rapid infection. That's one of the things that I think stopped a lot of the demonstration of healthcare workers associated cases because most of them would be in isolation and also would be long, long incubation periods. So I think it's probably potentially a combination of both. But I think there had to be -- in order to have the detection with people with end stage disease linked to individuals who were still alive, you had to have some kind of epidemic situation. If I were the movie character I would say: Think, can't prove. [Laughter] Although I never said that until now. Member from the Audience: Took us, what, about four years before we actually had a test for HLB 3 LAV and 1985 we introduced that test. Yet it wasn't universally accepted. Can you kind of talk a little bit about that? Some of the issues that we dealt with back then. Jim Curran: I have a cartoon I showed. One of the things that our laboratories did when the virus was isolated, we got a lot of reagent from the National Cancer Institute. Our jobs, John Ward, Charlie Schaible, Paul Feorino, Tom Peterman, a lot of people worked with the American Red Cross to demonstrate the sensitivity and specificity of the blood test and blood banking situation because it was about to be rolled out in blood banks nationwide. Unfortunately, the study that Harold did, he had several thousand gay men who were tested from a San Francisco hepatitis cohort, and demonstrated that the longer people were infected, not only were they infected a long time earlier, but the longer they infected, if they had positive antibody, the longer they were infected, the more sick they were to be. And Dr. Feorino tested specimens we had from blood donors and found out that essentially having a positive antibody was equivalent to being infected unlike a lot of other viruses. So it was a dangerous virus and having the antibody meant you had the virus and there was no treatment. So what came from a real need and urgency to get the infection led to a lot of distrust, particularly in the gay community about what would happen to the test results, who would know, who would tell whom, what would happen to my insurance status, what would happen to my identity? Because, after all, if you were a man with a positive antibody test, you were probably gay, at least that's what people thought. And to this day, when we see somebody with HIV, our own brains always say to us I wonder how she got it or I wonder how he got it. So that was the thing that led to the concern. There was essentially nothing that could be done for these people. But we were promoting the test and people were not always happy about that. Harold. Harold Jaffe: I think the other thing to say is the test really was first rolled out for the blood banks, because there were at that point hundreds of transfusion cases, and we had no way to prevent them other than voluntary disclosure of a man being homosexual or injection drug user. So really the point of the test initially was to screen donated blood because of a concern that people would go to blood banks to get the test because there was no other place to go led to CDC setting up a series of alternative test sites where people could go if they wanted to be tested but not be blood donors. Member from the Audience: First, thank you for the session. Thank you both for your service. Two simple questions: First, how do you think the AIDS epidemic has changed the thinking and practice of public health today? And the second is what do you think, the second simple question, what do you think is the perception in the general population in the U.S., I'll keep it to the U.S., the current thinking about AIDS and in that regard what is our biggest challenge going forward in that regard? Harold Jaffe: I'll do the first one because I think it's easier. It was interesting. Gary Nobel is sitting in the audience. I think he would confirm this. The thinking at the CDC in the early '90s was that the year of infectious diseases was over. We had vaccines. Small pox had been eliminated eradicated. We had antibiotics. And CDC's mission was changing. So we started growing in areas of chronic disease and environmental health. And there was really no expectation that suddenly we would have to sort of say, wait a minute, there's more out there than we knew about. But there was. And HIV became the prototype of the emerging infection, and now we're aware of dozens, if not more than that, of infections that we had no idea would infect humans that we thought were only in animals or didn't know about it at all that suddenly popped up. So I think it told us that we weren't as smart as we thought we were, and infectious disease era was far from over. Jim Curran: I'd rather answer that one again, so I'll try. Couple things in CDC that were going on. Harold and I worked in STD research before AIDS came along, and people used to say to us, when they thought there ought to be more contact tracing, how come you don't treat AIDS like any other STD? And my comment usually was: What do you mean, just ignore it? Because that's really what people did with STDs. They essentially ignored them as public health problems, for the most part. What made AIDS different was of course that it was fatal. And the fatality and the activists who were dying people themselves called attention to something that was so important that it deserved more attention. But there was no magic bullet. And so Bill Darrow was either the only doctorally trained behavioral scientist or one of two or three at the CDC in 1981. Now there are hundreds and hundreds and hundreds. And so I think that changed. I think the recognition and respect of behavioral and social scientists and social determinants of health occurred in parallel with the beginning of the AIDS epidemic. I'm not saying it wouldn't have occurred anyway. But it was certainly stimulated by AIDS and a lot of behavioral scientists at CDC kind of cut their teeth on AIDS. And it was okay to talk about sexual behavior. The other thing that happened was a new relationship with nongovernmental organizations occurred with direct funding and partnership with state and local health departments, because of the general horrible distrust of government at all levels by many people in the communities. And that's something which I think is renewed public health. I forgot your last question, Paul, but it was something about -- Member from the Audience: Perception. Jim Curran: I think people think it's pretty much over and not paying too much attention to it, largely because it hasn't been in the press very much. It's not publicized very much, because not as many people are dying. And you know every year four million plus people have sex for the first time in the United States. So since HARK, there's been 60 million new Americans having sex for the first time in an era where there hasn't been as much publicity. That's sort of the way I would summarize it. It's not over. And more people are infected than ever and they're going to be really crunched by the economic crush in the United States and the impossibility of healthcare reform. I think we're going to see more and more people lined up to get treatment in the future. Booker Daniels: With that, we'll have to conclude our panel session. Our time is up. Let's give a round of applause to our panelists one more time. [Applause]
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Channel: Centers for Disease Control and Prevention (CDC)
Views: 58,854
Rating: undefined out of 5
Keywords: HIV, AIDS, HIV/AIDS, Testing, 30 Years, Epidemic, United States, And the Band Played On, Randy Shilts, CDC, public health, health care, government
Id: pOcxmIsXSk0
Channel Id: undefined
Length: 87min 59sec (5279 seconds)
Published: Wed Jul 25 2012
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