At age 76, Susan Faludi's father underwent sex reassignment surgery. When Stephen became Stefanie, the feminist writer sets out on a journey to better understand her father -- an exploration that becomes an inquiry into the meaning of identity.
On June 5, 1981, the Centers for Disease Control and Prevention reported five cases of otherwise healthy, gay men in Los Angeles with the same strange pnuemonia. One month later, twenty-six more gay men had it. But now they were also appearing in San Fransisco and New York City. The disease was called GRID – Gay Related Immunodeficiency Disease, until it began affecting people of all genders, races, ages and sexual orientations. Dr. Anthony Fauci is head of the National Institute of Allergy and Infectious Diseases. He’s been involved in the fight against HIV/AIDS since it began. He reflects on the history and future of the epidemic.
- Dr. Anthony Fauci director of the National Institute of Allergy and Infectious Diseases/NIH.
Dr. Fauci: AIDS Epidemic a “Game Changer”
Dr. Anthony Fauci remembers seeing the first reports of young, previously healthy people who, in the summer of 1981, began presenting at hospitals across the country with unusual forms of pneumonia and cancer. “I remember very clearly that I literally got goose pimples because I knew that this was something new, strange, mysterious, and that it wasn’t going to go away because it smacked of an infectious disease, it smacked of a sexually transmitted disease, but we had no idea what it was at the time.”
Fauci refers to the early days of AIDS diagnoses as a “dark part” of his own medical career. “Not as dark as for the unfortunate individuals who were afflicted with this terrible disease, but I went from studying diseases in which I had developed some important therapies that made people well, so my day would be going into a room, seeing a person with a very serious disease, treating them, having
them feel wonderful, having the family hug me and I’m on top of the world to years in the early 80s of, you know, not being able to do anything except palliative treatment.”
“It was so painful and frustrating where virtually all of your patients died and almost all of them young men who were at the prime of their lives. It was a very difficult time being a healer who couldn’t heal anybody.”
An Early Stigmatizing of the Disease
Diane noted that in its earliest days, the disease was called “GRID,” (Gay-Related Immunodeficiency Disease) not AIDS. It appeared, at first, to only affect gay men, but Fauci says that pattern quickly changed. “Did that mean, for example, that people in places of power didn’t really want to put money into the study thereof?” Diane asked.
“It’s very clear that early on, the kind of leadership from political figures was not really apparent from the very beginning,” Fauci said.
Fauci developed a very strong relationship with the activist community in the mid-to-late 1980s, which helped him understand the community’s treatment and prevention needs much more fully.
From “Death Sentence” to Chronic Disease
“Today, if a 20 year-old comes into our clinic at NIH or any clinic in any hospital that has the capabilities for that and they’re newly infected and you put them on appropriate therapy and they take their therapy, you can mathematically model that they’ll live an additional 50 years,” Fauci said.
Fauci said that although the newest drugs work very well to suppress the virus, someone who is infected must stay on the drugs for their entire life span – which raises concerns about toxicity. “This is a very unusual virus that is very difficult to eradicate,” Fauci said. “We don’t think it’s impossible, but it’s very difficult.”
Researchers have also determined that if an infected person is treated successfully enough to get the level of virus in their bodies very low, it markedly diminishes the likelihood that the individual will transmit the virus to someone else.
MS. DIANE REHMThanks for joining us, I'm Diane Rehm. Dr. Anthony Fauci has been involved in the fight against HIV/AIDS since it was first described in 1981. In two and half decades, as director of the National Institute of Allergy and Infectious Diseases, he's testified before Congress 288 times. He's worked with every president from Ronald Reagan to Barack Obama.
MS. DIANE REHMDr. Fauci joins me in the studio to reflect on the history and best hopes for ending the pandemic. Please join us, 800-433-8850, send us your e-mail to firstname.lastname@example.org, join us on Facebook or Twitter. Dr. Fauci, I think you and I have been talking about AIDS for almost 30 years.
DR. ANTHONY FAUCIThat is correct, Diane.
REHMGosh, take us back to June 5, 1981. What happened that day?
FAUCIWell, on that day, there was a publication from the CDC, the Centers for Disease Control and Prevention, what they call a Morbidity and Mortality Weekly Report, which is their weekly report on diseases, mostly infectious disease, but any kind of disease.
FAUCIThey reported five young, gay, otherwise healthy men who were in Los Angeles, who presented with a very unusual pneumonia called Pneumocystis pneumonia, which you virtually never see, except in individuals whose bodies' defenses are significantly compromised, so it was really quite curious that this would occur and no one had any idea what it was and it...
REHMSo what did you do with that piece of paper?
FAUCIWell, I remember very, very clearly. I was sitting at my desk at the NIH. I looked at it, I thought, this is interesting. What a curiosity. I had been in infectious disease for the previous 10 years studying mostly people with compromised immune systems and I just had a bad feeling, but I thought it might just go away.
FAUCIAnd then one month later, on the 4th of July in 1981, another report from MMWR, this time with 26 gay men, again otherwise previously healthy, not only from Los Angeles, but also from San Francisco and New York City, who presented not only with this strange pneumonia, Pneumocystis, but also with a strange form of cancer called Kaposi's sarcoma, also seen almost exclusively in people with compromised immune systems.
FAUCIAnd it was at that point that I remember very clearly that I literally got goose pimples because I knew that this was something new, strange, mysterious and it wasn't going to go away because it smacked of an infectious disease, it smacked of a sexually transmitted infectious disease, but we had no idea what it was at the time.
REHMYou called it a game changer in your own career.
FAUCIWell, it was because I had had a reasonably successful career for the previous 10 years studying other things, studying aberrations of the immune system and the interface between infection and the immune system. But when I saw that report, I made a decision, almost by a gut reaction, that I was going to essentially completely turn around the direction of my career and essentially turf off to some other people the study of the diseases I was studying and start in earnest admitting and studying in detail these young men who were all gay at the time.
FAUCIWe didn't know that it would soon be seen in other populations, other individuals, but I would start intensively studying these individuals. And it was much to the chagrin of many of my mentors and friends who thought I was crazy. Why are you doing this? It's a handful of gay men with a strange disease. You know, who knows where it's going to go? Why are you changing the direction of your career?
REHMAnd what you encountered next was instead of making people well, you saw people dying.
FAUCIWell, it was a very -- I refer to it as dark part of my medical career and my life. Not as dark for the unfortunate individuals who were afflicted with this terrible disease, but I went from studying diseases in which I had developed some important therapies that made people well, so my day would be going into a room, seeing a person with a very serious disease, treating them, having them feel wonderful, having the family hug me and I'm on the top of the world to years in the early '80s of, you know, not being able to do anything except palliative treatment.
FAUCIIt was so painful and frustrating where virtually all of your patients died and almost all of them young men who were at the prime of their lives. It was a very difficult time being a healer who couldn't heal anybody.
REHMAnd it was called GRID, not AIDS.
FAUCIRight, and a very unfortunate stigmatizing type of a designation, Gay Related Immunodeficiency Disease, mostly because it was an immunodeficiency disease that appeared to be occurring at first only in gay men, but that quickly changed.
REHMAnd because that early misperception was that it was only gay men, there was a fair amount of anti-gay bias to the disease?
FAUCIWell, yeah, there was a lot of stigma associated with the disease. First of all, it's a mysterious disease, it's an infectious disease. It's seen in individuals who unfairly are being stigmatized because of their lifestyle and people who would have a stigma and a prejudice against them even if they didn't have this strange, unusual disease, so it was a very difficult time not only because of the seriousness of the disease, but the stigma that was associated with it.
FAUCIAnd then after that, it became clear that injection drug users, another group in which there's significant societal stigmatizing against, were getting infected, so it was a very, very difficult time not only from a medical public health standpoint, but from a sociological standpoint.
REHMBut did that mean, for example, that people in places of power didn't really want to put money into the study thereof?
FAUCIWell, I think that there certainly was that, sometimes subconsciously and sometimes consciously. It's very clear that early on, the kind of leadership from political figures was not really apparent from the very beginning. As things started to progress, there was a gradual change, but we, worldwide and including in this country, because of the unusual nature of it, people really were not as responsive as we feel now they should have been.
REHMWhat about President Ronald Reagan at the time. Do you feel -- or did he seem reluctant to use the bully pulpit?
FAUCIWell, yeah, I think the answer to that would have to be yes. It had a lot to do I think with his advisors who essentially didn't want him to get -- necessarily get involved in being very proactively open about it. He did do some, I think, important things. At the end of the day, he's not going to be judged and is not judged well because of that early on reluctance to talk about AIDS as openly as he should, but the fact is...
FAUCI...he did, particularly with me and others from the CDC, he allowed us, you know, to essentially have blanket clearance to go out and talk about it, to go out and investigate it. There weren't a lot of resources then, but one thing that isn't fully appreciated is the idea of letting, and in some respects, even encouraging people, as long as he and his direct administration didn't have to be associated with it.
REHMInteresting. So then the role of activist was so important?
FAUCIRight. Well, the role of activism in the HIV plague pandemic is extremely important in really creating something that we didn't see before, namely an active participation in the policy and decision making related not only to the science, but also to the implementation of the science. They were very iconoclastic, they were very theatrical in getting the attention of authorities, including me, who was publicly seen because I was given clearance to talk about it and to go out and to interact in the press, like we did on this show back then.
FAUCISo I became associated, and I think appropriately so, with the federal government, so they demonstrated not only at the scientific institutions, like the NIH and the FDA and the CDC, but also publicly on Wall Street and at St. Patrick's Cathedral saying, listen to us. This is a different situation, a, we've got to get more support, b, the clinical trials are too rigidly designed, excluding people from getting into the clinical trials, which you usually do when you're testing a drug and which you have multiple other drugs and you want to see if this one is better.
FAUCIThere were no drugs at the time, so they wanted greater flexibility and also with the FDA they wanted more rapid approval of drugs that looked promising, as well as allowing flexibility in getting people to have access to a drug when they were still on clinical trials. So there was a lot of reluctance to listen.
FAUCIProbably one of the most important things that I did, that I look back on that I feel good about, was rather than getting put aback by the in your face theatrical nature of it, but to just listen to what they were saying, read what they were writing and boy, I tell you, they really had some very, very good points.
FAUCIAnd that's what began in the mid to late '80s, the very strong relationship I developed with the activist community to the point where now there isn't a committee that we have that we don't have activists who are advisors to us about how to have a good community relationship.
REHMAre those activists still as hard at work?
FAUCIThey are. It's a little bit of a different situation because right now, we have excellent drugs to treat people. We've turned it around from being essentially a death sentence to if people get into therapy, that they can live essentially normal lives. But there are a lot of implementation issues that they still appropriately are pushing for.
REHMDr. Anthony Fauci is the director of the National Institute of Allergy and Infectious Diseases at the NIH. A short break and we'll be right back.
REHMWelcome back. Dr. Anthony Fauci has been on the front lines of the AIDS battle since it first began. Of course, back then, it was thought to be a disease of only gay men. We know a lot more about it in these now nearly 30 years of watching this fight against an epidemic that in its early years took so many lives. Dr. Fauci, just before the break, we were talking about issues of government and of course, after Ronald Regan, George H.W. Bush did do a fair amount for AIDS, did he not?
FAUCIYes, he did. In fact, when he was vice president and was thinking of running, which he did, for president of the United States, he specifically asked to come to the NIH and visit with me because he had heard that -- through the grapevine, that I had been the one who'd been on the front line of this at the National Institutes of Health. And he spent literally several hours at the NIH going around seeing patients, talking to me. And because of that, he manifested to me at least a real sincere desire to attack this thing and give it the kind of recognition and resource increase that it deserved.
FAUCIAnd it did because when he became president, the funding for the NIH research went way up. But also, he had a wonderful quality of listening. He would often call up or ask me down to the White House to ask about how things were going, the kinds of things we needed to do. So I think that was the turning point when George H.W. Bush became president. And then after that, we've done very well with President Clinton and George W. Bush and now with President Obama.
REHMDr. Fauci, there's so many theories out there as to how AIDS either got started, came to this country. What is your best theory?
FAUCIWell, there are some issues that are not theory, that are just scientific facts and some that are theories. Let me tell you the scientific facts. There's no doubt from doing molecular fingerprinting of viruses in what we call non-human primates, particularly chimpanzees, that the disease existed in chimpanzees in Africa decades and decades and decades ago. In fact, some studies indicate that the first jump of species was probably in 1920s or so and didn't really go anywhere because of the way the sociological situation was.
FAUCIAnd then after a couple of decades, as we got to the '60s and '70s where you had the dissolution of colonization and different changes in lifestyle, breakdown of the family unit and truckers and commercial sex war. 'Cause then you started to develop the beginning of an explosive heterosexual epidemic in Sub-Saharan Africa. How it got to Europe and to the United States, you can make some obviously reasonable assumptions. It was first noticed in the gay population in the United States, so there had to be some sort of travel exposure or what have you.
FAUCIBut how it emerged in humans, it appears to be clear. You can try and track how it got to this city and how it got to this country and it's very, very difficult to make a definitive statement about that.
REHMSo now that it's moved from a death sentence to a more chronic disease that has to be managed, is there an ongoing search for even better newer drugs?
FAUCIWell, there are. We have some terrific drugs that, when given in combination, can bring the level of virus down to below detectable level resulting in a spectacular change in the prognosis. When I was seeing patients in the early '80s, they would come in with an advanced disease, so you wouldn't see them until they were very sick. The median survival was about six to eight months.
FAUCIToday, if a 20-year-old comes into our clinic at the NIH or any clinic in any hospital that has the capabilities for that and they're newly infected and you put them on appropriate therapy and they take their therapy, you can mathematically model that they'll live an additional 50 years.
FAUCIFifty, 5-0, 5-0. So you ask the question about newer and better drugs. Yes, we're constantly looking for drugs that are less toxic 'cause there's always toxicity to drugs, but there are a couple of things going on. One is that there is a push to try and develop what we call a cure for HIV because the great news is that you can suppress the virus in individuals who are infected with appropriate therapy. The sobering news is that with the current drugs, they need to be on therapy essentially for the rest of their lives.
FAUCISo if we can get people to be able to do well after you discontinue the drug, but we're going to have to develop a whole new class of drugs to do that because this is a very unusual virus that is very difficult to eradicate. We don't think it's impossible, but it's very difficult.
FAUCIThe other issue with regard to the challenge ahead is that we know not only is treatment good for the person who's infected, but we also know that if you treat somebody and get the level of their virus very low, a recent study showed that it markedly diminishes the likelihood that that individual will transmit the virus to someone else. So we're now left with this interesting concept of treatment can actually serve as prevention also.
FAUCISo the big challenges ahead right now is that we know that, for example, just in this country, there are a million people infected with HIV, about 20 percent of them do not know that they are infected. And of those individuals, the majority of transmissions that occur are occurring from someone who doesn't know that he or she is infected. So if we can be very aggressive domestically and globally in seeking out, voluntarily testing individuals, linking them to care and getting them on therapy, we already have many of the tools to turning around this pandemic.
REHMHow many new cases are we seeing each year?
FAUCIIn the United States, about 56,000 new cases each year, which is bad. What's even worse is that number has been steady at that level for at least 10 years. We've been unable to get below that. We have to do a much better job of, as we say, seeking out, offering voluntary testing, linking people to care and getting them on therapy.
REHMAnd do we know what percentage of that 56,000 may have contracted the virus from drug usage...
REHM...or from sexual uses?
FAUCIIn the United States, it's still about close to 50 percent men who have sex with men and, you know, about 30 percent heterosexual, about 12 to 15 percent injection drug use.
FAUCIIn Sub-Saharan Africa, it's 50/50 -- I mean, it's 50/50 man/woman, so it's like 90 plus percent heterosexual transmissibility in the developing world.
REHMWhat about this study that we heard about earlier this month finding patients taking Anti Retro-Virals were more than 96 percent less likely...
REHM...to transmit the virus? Is that a game changer?
FAUCIWell, that is. That's what I was mentioning just a moment ago. It's treatment as prevention. We always suspected from what we call observational and cohort studies and mother-to-child transmission that the lower the level of virus in the infected person, the less is the likelihood that they will transmit the virus to an uninfected person.
FAUCIThis study that you're referring to, Diane, from a few weeks ago was what we called a randomized study where we took heterosexual couples, one of whom in the couple was infected and the other one was not. It's called a discordant couple and we divided them into two groups. One group received therapy at an early stage of disease between a certain level of their CD4 count and the other waited until the disease progressed to the point where you would reach the guidelines for the particular country that you were in to start therapy.
FAUCIAnd when we examined the study, the results were so overwhelming we had to prematurely stop the study because treating people earlier, who are in a sexual relationship with an uninfected individual, decreases by 96 percent the likelihood that that person will transit their virus to their uninfected heterosexual partner.
REHMSo we're still in the therapy phase, but what about the vaccine...
REHM…phase. Is that the Holy Grail?
FAUCIWell, it is the Holy Grail. We -- you know, a couple of times ago on this show and you asked me and I said, you know, Diane, I'm not sure, quite frankly, even if we ever will be able to get a vaccine because of how unusual this virus is and how the body's immune system doesn't respond in a way it does to most other viruses.
FAUCIWell, about a year and a half ago there was a study, a vaccine study, from that, we funded with the United States Army and Thailand and it showed the first glimmer of hope, a modest amount of protection, only 31 percent, which is certainly not ready for prime time. And you wouldn't want to deploy a vaccine like that, but at least prove the concept that you can prevent infection with a vaccine. So we have a lot of work ahead of us, but there is light at the end of the tunnel when it comes to vaccines.
REHMAnd you are still as determined as ever to see this through.
FAUCIMore so, Diane, because we now know that we've accumulated the tools, that there are things that we can do right now that would have a major impact. That's what we call the implementation gap. We need to implement things we have, but we also have a research gap. And the top of that research gap is what you just mentioned, the development of a safe and effective vaccine.
REHMDwayne in Frederick, Md. wants to thank Dr. Fauci for his devotion to the public service and his generosity coming to "The Diane Rehm Show" so often and giving of his time.
REHMAnd I thank you as well.
REHMHere's an e-mail from Joseph who says, "I'm a 32-year-old gay man who has dated many HIV positive men in my lifetime. Although I do adhere to safer sex practices now, such was not always the case. Could you please address the possibility of immunity to HIV and also are there any trial studies going on right now to which I could volunteer?"
FAUCIWell, there are certainly many studies that one can easily go to clinicaltrial.gov and see the clinical trials that are available. The individual caller who mentioned that there were times when he had unsafe sex with someone who is infected. In general, HIV is not a very easy virus to transmit sexually, but you've got to be careful and not think that just because that's the case, that you can just go ahead and do what you want to do. I would say that the caller is lucky that he got away with not getting infected.
REHMSo you don't think that they're an persons...
FAUCIThere -- well, there's a very -- yeah, there's a very small percentage. There is a mutation in a gene that one percent of the Caucasian population has and essentially no percent of the African Black population has that allows a person to be essentially unable to get infected with one of the types of the most common strain that circulates of the virus, so there is some genetic predisposition to protection.
REHMDr. Anthony Fauci and you're listening to "The Diane Rehm Show." We're going to open the phones, 800-433-8850. First to Scott in Indianapolis. Good morning, you're on the air.
SCOTTDiane, I'd like to say to the expert on the show that I was a freshman at San Francisco State in 1981 watching the news and they were talking about some of the men who were catching this disease and they thought it was coming from cats at first, was the first story, and it was like the gay cats up in the Castro district. Then later, they started saying more people was catching it -- oh, it's coming from the rats in the sewer and stuff like that. Then all of a sudden, some straight man caught it in the Midwest.
SCOTTWell, soon after that, Dick Gregory showed up on campus, thanks to the Penn African Student Union at San Francisco State University. Dick Gregory stood up on the stage and said that the Soviet Union was mad at the United States government because the United States government had released germ warfare on its own people.
SCOTTNow, I don't know what you talking about with Reagan, but Reagan introduced cocaine and AIDS. And as a result, now we got the NIH with a whole institution studying a disease that zero percent of black people all -- you know, we out. One percent of white folks already, you know, some genetic thing. There's gotta be some racism to that. Plus, the prison system as a result of cocaine and drugs. It's all (unintelligible).
REHMAll right, sir.
FAUCIThere's very little to say. I mean, I’m sorry about his opinions, but he's completely incorrect, so.
REHMJust completely incorrect.
FAUCIWell, I mean, I'm not sure what he's talking about. I just...
REHMI think there are and have always been...
FAUCIWell, there's always crazy theories about how...
REHM...these conspiracy theories.
FAUCI...yeah, but I can tell you literally, from the very first weeks that this came out, the CDC and the NIH and others involved in the federal government, though we didn't know it was an infectious agent, it was clear that it was acting very much like an infectious agent. We were very careful about making any statements without any scientific basis. But I don't think there was ever any discussion that this was spread by rats or whatever it is or that anybody released it deliberately.
FAUCII mean, that's conspiracy theory and there will always be conspiracy theories, Diane, but you've got to go with the science and the science tells you what actually went on and what is going on.
REHMHere's an e-mail from Emily in Ann Arbor. She says, "I've been volunteering with people living with HIV/AIDS for almost a decade. I'd like to hear Dr. Fauci comment on how best to get involved in HIV/AIDS related community service today. What would give volunteers today the most bang for their buck? A lot has changed even since I've been involved. Will he comment on how the population of those infected has changed and how that presents new challenges for prevention?"
FAUCIWell, that's a very good point. There are a number of community organizations, clinics, advocacy organizations, depending upon what city you're in. There are so many of them here in Washington. You have the Whitman-Walker Clinic and the association with them. We have volunteer organizations that go out and help bring food to people who are sick at home, help take care of them.
FAUCIBut probably one of the things that's even more important now that people have the availability of medications is that the big gap we have is to get out into the community and help educate people, to seek them out, to speak to them, to explain to them the importance of getting tested and linked to care. Those are the kind of things that we need good community help for.
REHMDr. Anthony Fauci, he's director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health. We have many callers. We'll get back to you in just a moment.
REHMAnd we're back, talking about the history of and, indeed, the future of treatment for HIV/AIDS. Dr. Anthony Fauci is my guest. He's been on the front lines dealing with this ever since AIDS first became known to the general public. And let's go first to Raleigh, N.C. Good morning, Len, you're on the air.
LENGood morning. I was a resident at Duke back in the '60s when Dr. Wayne Rundles first describes aleukemic leukemia, people who looked like they had leukemia, but had very low white counts and just died. And many of these people had Kaposi sarcoma. Dr. Moriz Kaposi was a Hungarian researcher in the 1800s who in, I think, 1872 described this tumor for the first time. Although it's a herpes related virus, there's often associated with HIV. I wonder if Dr. Fauci could comment.
FAUCIWell, Kaposi's sarcoma, particularly in the early days, was one of the AIDS defining illnesses and the caller's correct, it is associated with a herpes like virus. It is...
REHMHow did it manifest itself?
FAUCIWell, it is a proliferation of what we call endothelial cells and vessels, which mean that people get these blotchy, purplish lesions sometimes on the skin, but also they can get it in the lungs, in the erlimechosa (sp?) in the gut and it can kill you. It's a potentially lethal form of a cancer that was more common than it is today in HIV infected individuals, but was one of the -- as I mentioned, the second report from the CDC reported not only numersistis (sp?), but also Kaposi sarcoma.
REHMSo you don't see that as much anymore?
FAUCIWe're seeing less of it now, less of it now.
REHMI see. I wonder why?
FAUCIWell, it's probably a combination of gay men being more protective in the sense of condom use and things like that whereas prior to thinking that there was any kind of association between sexual activity and this disease, people were getting infected before we even knew there was a disease.
REHMWhat about the percentage of women?
FAUCIWell, it depends on where you are. In the Sub-Saharan Africa and in many developing countries, it's about 50/50, which reflects the heterosexual nature of the transmission in those countries. In the United States, where we still have close to 50 percent of the cases are among men who have sex with men, heterosexual transmissibility is about 30 some odd percent. So you have a relatively small percentage, when you look at the big picture.
FAUCIBut women, particularly lately, as we now get into the African-American community where, unfortunately, the African-American community comprises about 12 percent of the population in the United States, but about 50 percent of the new infections are among African-Americans and women, who are the sexual partners or even women injection drug users, it's a leading cause of death...
FAUCI...among African-American women in this country who are at a young age.
REHMLet's go to Irving, Texas. Good morning, Greg.
GREGGood morning. Dr. Fauci mentioned earlier in his remarks, particularly in the early '80s, that he had been the object of a lot of protest. I think he also mentions St. Patrick's and the CDC. I just wonder, with the hindsight of several decades, how he perceived those protests, their appropriateness and also, I guess, their effectiveness or lack of effectiveness, in bringing about change.
FAUCIExcellent question. The basis for the protests were entirely appropriate. They had a very good -- the activists had some very good points. And as I mentioned just a short while ago on the show, I was reading what they were saying. And as they when they were protesting, the protesting was to call attention. It was a, listen to me, please, not, please, listen to me (laugh), you haven't been listening to me very much.
REHMAnd didn't you sit with them?
FAUCII did, I did, but the caller's saying is that's -- they became very theatrical and iconoclastic, which really got people's attention. So nobody likes to see somebody take the hosts in St. Patrick Cathedral and throw them on the floor. They sometimes went a little bit too far, but in general, the sum mean of their protests, I think, were appropriate and brought attention properly to things that we needed to address and it certainly changed my thinking of things and allowed me to, I think, perform my job better, knowing what their concerns were.
REHMHow do you think the next generation is going to make its priorities known, as far as no vaccine, no cure. How is it going to continue to push?
FAUCIWell, the activists are pushing now for a number of things, obviously a cure being one of them. The activists who are sophisticated enough to see exactly what we're doing with vaccines know it's not an easy road. But one of the things they are pushing for is closing the implementation gap. In other words, realizing that throughout the country and certainly throughout the world, we have the capabilities, the tool kits to do much better than we're doing. We need to just put more resources in it.
FAUCIAnd what they are mostly protesting about right now is put more resources into these things. For example, waiting lists for the ADAP, the AIDS Drug Assistance Program, having a waiting list in this country to get on. The activists are infuriated at that.
REHMWell, but Dr. Fauci, you've got a Congress, at least part of which is totally intent on cutting back...
REHM...on cutbacks not only to huge programs like Medicare/Medicaid, but to individual departments...
REHM...like the National Institutes of Health. How is that likely to affect you?
FAUCIWell, I mean, obviously cuts in our resources would have a terrible effect. I mean, that's just the reality of...
REHMAre they having that effect now?
FAUCIWell, we're operating on a very constrained budget. We can certainly do a lot more if we had more resources, there's no doubt about that. I mean, it's public knowledge, I'm not saying anything that's secret (laugh) that, you know, the NIH budget has been flat for a considerable number of years...
REHMSo how is that affecting what you do?
FAUCIWell, we still do a lot of excellent research, there's no doubt about that, but it -- with more resources, we could do a lot more.
REHMYou're not telling me what you're not doing.
FAUCIWell, things are, for example, studies on vaccine. It sounds great, Diane. We sound like we're at a Congressional hearing. Tell me what it is you can't do. Well, a lot of things get slowed down, they do. I mean, we could probably do vaccine trials more expeditiously with greater numbers of people. We have a number of programs of trying to find a cure, of trying to determine the effectiveness of different prevention modalities. We're doing a lot of it, but with more resources, we certainly could do more. I mean, I'd be foolish to say no.
REHMDo you get angry, do you get frustrated, do you get -- you know, do you throw your hands up in the air every now and then and say, you know, this is crazy? There cutting back on the very things that would help make this a healthier population.
FAUCIYeah. There's -- it's very troubling. You know, you have to realize that my entire focus of my life is health and medicine and particularly in the arena of HIV, so that's my top priority. I do the science and help to implement the science that provides the scientific basis for people to make their decision about the kinds of things they're going to want to implement.
FAUCIThe only thing I could do with the science behind the scenes, I could tell them how important I feel this is, but people who make the decisions have multiple competing priorities. I personally happen to think health and the lives of people is a really, really high priority.
REHMYou gotta convince them, Dr. Fauci.
REHMThat's all there is to it. Let's go to East Hampton, N.Y. Juliana, you're on the air.
REHMHi, go right ahead.
JULIANAHi. Dr. Fauci, a bit of history. In 1956, I worked for an arm of the CDC or NIH and there was an epidemic of syphilis in New York and a doctor had to report a positive. And the infected person was asked to come into the clinic to be interviewed. Mostly they were men and they looked heterosexual. They were asked how many sexual partners they've had since the last holiday, let's say Easter.
JULIANAThey were mainly men. It was astonishing. Some said 300. If the person could identify the partners, then we would interview them as well and get them in for penicillin treatment, which was, you know, an easy course of treatment. Was something like that done in the early stages of HIV positive results?
FAUCIWell, Diane, what the caller's referring to is contact tracing. The situation with HIV back in those early days, and even to some extent today, was somewhat different. There wasn't contact tracing of people that may have been exposed.
FAUCIAnd the reason there wasn't, you know, a lot of people argue there should've been and the reason that there wasn't, that there was so much stigma associated with HIV and the idea of a person -- and if you go back then and you were there, I mean, people would lose their jobs, they would lose their health insurance, they would get kicked out of their homes.
FAUCIIt was a different situation than someone coming in with gonorrhea or syphilis and saying, well, you know, I got this, great, no problem.
REHMAnd now on penicillin, yeah.
FAUCIYeah, yeah, yeah, give me some penicillin and yeah, I had sex with this person, that person and it was over with. With HIV, it was so much stigma associated with that, there was reluctance to go out and reveal that an individual had this particular disease. Now, there is a public health argument to say that in the big picture of things, that may have been a mistake, but you have to understand why it was done.
FAUCIIt was a terrible stigma associated and it was very unfortunate for those individuals because they would suffer not only from their disease, but from all of the prejudice against them because they were sick.
REHMDo you think that prejudice has diminished significantly?
FAUCII think so. I think you still have people who no matter what you do or no matter how much knowledge they have about things will always be prejudiced, but I think that the extent of it is significantly less now than it was in those early days.
REHMAll right. To Middleburg, Va. Jan, good morning.
JANGood morning, excuse me. I'd like to ask a question to Dr. Fauci. You've already basically answered what I originally wanted to ask, which was the discrepancy between the -- what you call the closing the implementation gap, which is still between the findings of the study on treatment as prevention and the fact that there is a growing list of waiting lists around the country for people who are trying to get access to medication.
JANAnd I'm getting the sense from you that you share that that's really a very bad situation. The question I have for you now is if indeed there is not going to be any improvement between now and July next year, when the World's AIDS Conference will be held here in Washington, D.C. Would that be an opportunity, when the world's focus will be on the United States, to show how basically bad the current situation is in this country?
FAUCIWell, certainly, the World AIDS Congress, the International AIDS Congress that takes place every other year that's scheduled for July of 2012 will almost certainly be a focal point for people expressing their views about things that they are concerned about and one of the issues is going to be what the caller mentioned. Hopefully those kinds of things will be straightened out by then, but if not, I think it's inevitable that activists will come and will demonstrate and be concerned about not only in the Unites States, but globally.
FAUCIHaving said that, you've got to remember that I really want to see things get implemented better, but the United States is the leading country in the world by far in treatment and prevention and care in HIV internationally. We need to do more, there's no doubt about that, but we -- you can't forget the commitment, particularly in programs like PEPFAR, the President's Emergency Plan For AIDS Relief, and the Global Fund, that a lot is being done. And again, in the same breath that I say that, I say a lot more still needs to be done.
REHMDr. Anthony Fauci and you're listening to "The Diane Rehm Show." To Danielle in Wilmington, N.C. Good morning.
DANIELLEGood morning. I'm not sure you can hear me. I'm on the road, so let me know and I'll try to pull over.
REHMGo right ahead, but I do wish you'd pull over.
DANIELLEOkay. I was calling because I wanted Dr. Fauci to review the timeline between the recommendation for treating once you go below a certain CD4 count and the newly recorded evidence of early treatment and the preventive benefits and to see if there may have been an opportunity earlier to look at this, given that there was evidence that it was beneficial to provide prophylactics.
FAUCISure, that's a good question. There has been an evolving situation for years, when the combination of therapies became widely available in the mid '90s, 1996. The issue was when do you start therapy, at what level of a person's immune function decline. And it was always a question of the balance between the benefit to the individual versus the toxicity of the drug over a long period of time.
FAUCIAnd gradually, to make a long story short, we have progressed to the point of we've had suggestions and then good cohort studies that indicate that the earlier the better and many of the toxicities that we thought were due to the drug, actually were due to the chronic replication of the virus. So right now, the Public Health Service guidelines indicate you start therapy in an individual between 300 and 500 and some parts of the recommendation indicate that some physicians elect to go and start therapy when it gets higher than 500 CD4 count.
FAUCISo it's an evolving situation. The recent data that you mentioned that indicated that not only is it good for the individual patient, but it's good to prevent, is something that was only conclusively proven literally a few weeks ago.
REHMFinal question. Dr. Fauci, you said there are approximately 1 million cases currently, 56,000 new cases each year and that's remained pretty much the same. Of those million cases, how many do you expect to live a long life?
FAUCIWell, you can say with certainly that if they get on therapy at an appropriate time, that the vast, vast, vast majority of them will. The only trouble is if you look at the numbers, the numbers are disconcerting because of those million people, I told you 20 percent of them do not even know that they're infected. If you look at the whole cohort, only about 20 percent of them are on therapy to the point of bringing their viral load to below detectable level. That's a relatively small percentage.
REHMDr. Anthony Fauci, as always, thank you so much for coming in, talking with us, providing our listeners with such up-to-date, good information. And thanks for all the work you do.
FAUCIThank you, Diane.
REHMThanks for listening, all. I'm Diane Rehm.
ANNOUNCER"The Diane Rehm Show" is produced Sandra Pinkard, Nancy Robertson, Susan Nabors, Denise Couture, Monique Nazareth and Sarah Ashworth. The engineer is Erin Stamper. Dorie Anisman answers the phones.
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