前不久中國時報刊出董成瑜專文介紹CindyPatton（裴新），當時CindyPatton應中央大學〔性／別研究室〕的邀請，在中央大學客座一學期。Cindy Patton除了積極參與美國婦女解放運動和同性戀平權運動外，對愛滋病所涉及的法律、醫學、政治與文化等問題的研究更是不遺餘力，其代表性著作包括Sex and Germs（1985）、Inventing Aids（1990）等等。這個專訪是在Cindy十二月底返美前夕進行，訪談內容特別針對十二月底返美前夕進行，訪談內容特別針對何謂〔發明愛滋〕、愛滋病自流行以來到現在的研究過程、以及所牽涉到的法律、公共政策、預防措失和愛滋病患者的基本人權等等相關問題。同時，也請她談談切身目睹愛滋病最初個案的經驗，如何積極參與早期對愛滋病的研究過程。最後，請她評論台灣現階段愛滋病防治政茦的看法。雖然她一再強調對愛滋病的防治是因文化和歷史條件而異的，並不具有普適性。但是，她強調對愛滋病毒感染者的隱私權的尊重與保密是首要的人權尊重。
Lee Shui Chuen （以下簡稱 Lee ） : Let's start this interview with the title of one of your books on essay and would like to see what you mean by 'the inventing of Aids'. Is the inventing of Aids a new kind of disease or a cultural problem? Would you like to develop the leading theme a little further?
Cindy Patton （ 以下簡稱 Cindy ）: O.K. Perhaps, I would like to get best understood by explaining why I entitled the book Inventing Aids. One thing I am trying to suggest with that title is that how we think about Aids, and what we know about Aids, and other product of the variety of cultural ideas, research practices, government and extra-governmental practices that each is not simply a little biological entity. It can't be understood only thlogical entity. It can't be understood only through bio-medical knowledge.
Lee: So, in the Inventing Aids, you also talk about the inventing of African Aids. Do you mean there is some kind of power or racial prejudice on Aids?
Cindy: I think one of the things that is most difficult for us in the late 20th century to understand is to think about a disease phenomenon. In the West and in developed countries, the kinds of rapidly designated diseases that have characterized early period are forever gone. So, it is quite odd on the modern mind to suddenly have a disease which seems to be beyond science' capabilities. I try to point out in my work is that we need to understand that biological knowledge and biological thinking is not separate from some conscious religious ideas, and it is not separate from government policies and strategies. One of the concerns I have early in the epidemic in the naming of the disease, media coverage, and sort of general growing sense of aids disease as infective was the sort of containment of thinking about Aids in relation to western gay men. It was clear from the beginning at the epidemic that there were substantial numbers of injecting drug users, and there are substantial numbers of people who did not seem to be homosexuals, particularly in African countries. They were because originally they were migrants within Europe. So, it seems to me it wogrants within Europe. So, it seems to me it would be a bad idea to continually foresaid it was a biblically gay disease instead of it as a kind of marginally infected disease. So, part of what I was arguing in the Inventing Aids is that the term Aids in itself almost seems to mean 'gay men'. And when researchers want to talk about something else, they specify that, so they say: "African Aids" by which they mean the disease Aids in a different sexual context. And then, in the early 90s, researchers begin to talk about Asian Aids as well. So, there is a kind of weird combination of thinking which is more or less scientific thinking, but it is hooked together with sexual thinking.
Lee: Is there a difference between Pattern 1 and Pattern 2?
Cindy: There is a Pattern 3. Pattern 3 is called where Aids writ pale. So, until about 1991, Asia was called Pattern 3, and it meant that there was not enough Aids in that area to characterize as Pattern 1 or Pattern 2. It was highly problematic. Ostensibly, this designation pattern 1, 2 and 3 is based on epidemiology. But, in fact it corresponds exactly to older ideas that the World Health Organization used to describe the development of turberculosis in underdeveloped countries which turned out not to be true. This year U.S. has more African type cases or Pattern 2 cases than it has Pattern 1. So, within the U.S. now you have patternrn 1. So, within the U.S. now you have pattern 1 and pattern 2. The use of patterns as a form of epidemological description was problematic. It never makes sense to talk about Pattern 1 and Pattern 2. What this attempted to do was to argue that in the U.S. Aids will be primarily mainly on gay men, and in Africa, Aids will be primarily on something other than gay men. It turns out that there are quite a wide variety of male homosexual practices in different parts of Africa. But, because very early on, Africa was designated Pattern 2, the government would say: "we don't have any homosexual , so, we don't need to do that kind of education. We don't need to do that kind of research". And, similarly in U.S. homosexual men were totally separated. There is a study done by the C.D.C, from 81-92. It was a study of the sexual partners of male and female prostitutes. It turned out that among the men who were identified as clients of male prostitutes, more than half also have sex with female prostitutes. And it turned out that among the men identified as clients of female prostitutes, more than a third, or less than half, also have sex with male prostitutes. So, the line between homosexual and heterosexual is fairly unclear. But, this original nomenclature Pattern 1 and Pattern 2 really drew a line. And lots of research shouldn't have been done, get done.
Lee: Is there any indication that Afree: Is there any indication that African Aids were always there? Is this a different way of spreading Aids? Cindy: In the nomenclature Pattern 1 and Pattern 2, there is no difference. There are strains of the virus. There are different variations in the virus. This is true of every virus. So, there are people whose job is to study genetic composition of the virus. And they will tell you there are 150 different variety of the virus. From the standpoint of public health, none of those variations matters. None can be shown to be more virulent, less virulent. For the most part, variations in the virus do not have a demonstrable difference. They are not valuable from the standpoint of prevention. In terms of the origin, I do want a sort of address that, the idea of origin is highly problematic. As you probably know, the reading about the history of medicine, it is often 50 or 60 years after a disease phenomenon before it's reae phenomenon before it's really possible to look back and a sort of classification and organization of all of what happen in that situation. It does seem that HIV is new. There was possible that after 50 years we come to a fact after the end of epidemics, it turns out that some other disease phenomenon that have operated differently were actually the same thing. It is also highly probable that at some future day HIV will be re-classified, in the way hepatitis were. With regard to epidemiology, the origin is in America clearly. This is where the first cases are. There are cases supposedly in the 50s in Africa, we don't know anything about these individuals. All we have are blood samples.
Lee: It comes to this problem that concerns us. Do you think there is a possibility of Asian Aids?
Cindy: Do I think that Asian Aids will be epidemics? Or Asian Pattern? I think it is probable from the policy standpoint. It's better to think of HIV as the kind of spread patterns that we have seen in urban area in Africa are probably the norm. The patterns in spread you see in the urban gay community in Europe and North America are probably not the norm. There are reasons why HIV spread faster and was more visible in host communities and has to do with the fact that most gay men are both the recipient partner and the active partner. Heterosexuals cannot reversehe active partner. Heterosexuals cannot reverse roles in the biological standpoint. So, within male-female sexual relations, if the man is infected, its odds of infecting a woman are much higher than infected woman are infecting a man. It been real difficult, biological speaking, for woman to infect a man. So, this idea that prostitutes are giving HIV to hundreds and hundreds of men is just wrong. It is not supportable scientifically. There are no known theoretical models support that. So, for example, men in the U.S., middle-class men in the U.S. rarely have sexually transmitted diseases, very uncommon, relatively uncommon. They are treated early. In Nairobi, among even middle-class men, sexually transmitted disease is fairly epidemic. So, there is the kind of differences between U.S., where it is rare for man to get infected by woman. It basically doesn't happen. In Nairobi, apparently in the study, the rate is higher. They believe it is caused by a sexually transmitted disease.
Ning Yin Bin （以下簡稱 Ning）:Actually, lots of HIV carriers here proclaim that they are heterosexuals might actually have this homosexual behavior; but they don't want to admit it.
Cindy: From the most of the studies have been done around the world, we already know that heterosexuality is not as governments want people to believe. Now, why man has sex with other man is extremelyw, why man has sex with other man is extremely variable. There are many causes for long- standing cultural practices with male-male sex. Probably, most cultures have this. Cultures don't have them tends to be because Christians came in and colonized this?you cannot do that anymore. There are also in almost every country, including U.S., class-based structure of male prostitution. It's truly fairly common. Working-class cities like Baltimore in the U.S. have, for generations, had male prostitution. Fathers will help their sons as male prostitutes. It's extremely common. So, this happens all over the world. So, there are all kinds of male-male sexual activities going on that governments have very hard time identifying.
Ning: Rhetorically, the activists here stress the fact that a lot of Aids patients are heterosexual. What do you think of that? Because, many people is told that Aids is not a gay disease. It's everybody's concern.
Cindy: This is a real difficult issue facing by every country, and by the global programs on Aids. And the question is how do you get people to recognize them as a kind of bio-medical problem. And, most health educators believe that people have to be personally afraid of have being affected. This is the dominant health belief across cultures around the world. The problem is it affects people differentially. So, it's really a problemeople differentially. So, it's really a problematic strategy. It could be a short-term strategy for getting people interested. But, I think, as a strategy, you think scaring people will work, it doesn't work in the long term. For people who are outside the most hard-hit groups, they just eventually say that will never get them.
Lee: Let's turn to another question. For a long time, you have personal contact with Aids patients. I would like to hear your personal experience with Aids. Cindy: And, in official, I have Aids. I think it's difficult here to understand what it's like living in Boston, New York and Atlanta, or San Francisco where it is totally normal you see people who clearly have Aids working around all the time. I lived in Boston through most of the early years of epidemics into the early 90s. So, I saw this evolution occurred from the time where there were six cases in Boston. And people were just totally "freaked out". People were not treated in hospitals. There was one case I always remember. A young woman of Boston University who has turned out to be infected through a boy-friend. She was about the eighth case. All the first cases were gay men. She went with severe respiratory problems. And they say you are just studying too hard. Partly because she was a woman, they were like, you know, women are always 'sissy', they were always complaining. She disy', they were always complaining. She died six weeks later after being sent home for being studying too hard. There were cases like that. I basically remember all of the original cases. Each one was unique and special. And the first time, a set of problems occurred. The doctors didn't know what to do. There was just a real disaster. From the medical standpoint, people were isolated for precautions. They were pumping people full of so many drugs that they were basically killing people by overtreating. They were giving levels of antibiotics that were just way beyond anything you are going to tolerate. So, people were not only sick, they were really really suffering a lot. In the early years, it was possible that it was environmentally caused problems. Nobody know. It's like really three years before it was clear it was sexually transmitted disease. In Boston, there was a community clinic system. One of the clinic served an elderly housing project. It was in a very poor neighborhood where a lot of prostitution happened. They resulted in a kind of gay ghetto. So, this particular clinic served prostitutes, gay men and elderly people. So, we did some of the early epidemiology in Boston out of that clinic. So, we kind of know the doctors. I was on the board at the clinic. We kind of know some of the doctors and researchers anyway. There was a lot of suspicions at that time. One of the reasons our clinic had fundine of the reasons our clinic had funding was because in the sexually transmitted disease clinic they were trying to treat gay men. The gay men wouldn't go, because they say if we go to this clinic, everyone is going to know we were gay. So, we have got money from general clinic and people trusted our clinic. So, from the very beginning, we had a tremendous amount of input into the whole research and treating process in Boston. Overtime that diminished because epidemic got huger and huger. But, for the first couple of years, we were quite successful in having some kind of control. That's when I began learning the medical stuff. I didn't know anything about the science before that. And it just became immediately clear that the only way to participate was to understand the science. I became the head of the institution review board. I really realized that I had to study science, because I were making decisions about research projects. So, I had trch projects. So, I had to find out how epidemiology worked. We didn't do any drug-trial at that time.
Lee: Will you say something about under-ground medical treatment at that time?
Cindy: At that time, there were no underground medical treatments. From about 81 when the first cases were turned out until the discovery of virus in 84, it was just a kind of like pouring drugs to people. They tried everything. In the early years of the epidemic, I can't probably emphasize enough, we didn't know that there was a virus, so we couldn't discover there were Aids symptomatic people. All we had were very sick people, not even kind of sick people, but, I mean, people who were almost dead. And they had this things called opportunistic infections. You understand that the distinction between HIV and opportunistic infections? The way it works: you get HIV, but HIV itself hardly ever kills you. What it does it interferes in the immune system. So, there are a certain class of antibodies start not being produced. It probably takes about between 15 or 20 years to go from a normal level of antibodies down to a dangerous level depending on a variety of factors, some of which are unique to individual. Why? We don't know. So, people have different naturally occurring immunities. So, depending on that individual combination plus whatever germs are normally in your ention plus whatever germs are normally in your environment. People will get additional diseases on top of HIV. So, in the early years of the epidemic, all we were seeing was people who had known immune system left to have a variety of diseases that were unrelatedancers, pneumonia, fungus disorderike athletic foot that took over your entire body. It was a known disease. If you had the fungus, you will get those drugs. So, they are giving you a sort of ten times amount of drug, or 100 times amount of drug that they normally gave people that. That's why I said before that they were killing people with the drugs, because they thought that it was fungus got out of control, not the person's body. So, it wasn't until 84 that people had hypothesized the virus. So, in 83 or 84, that's what is learned. That's the point in which the whole treatment things changes. Because they go and say: "Oh! A virus! We know what to do with a virus. You make an antiviral." So, all of a sudden, there was a huge amount of research to produce antiviral. There was a series of drugs that were supposed to be used in biological war. So, they developed AZT. There was no disease for AZT, it's just a kind of sitting duck. The original fantasy is you find the virus, you kill the virus. So, almost all of the drug research at that point switch to finding a cure, finding something that will kill the virus. All of this opportunistic infections All of this opportunistic infections which is what actually kills people. They stop doing research on treating AIDS. All subsequent research must refer to that treatment., because it is now the standard of care. From 85 to 86, AZT was accepted until 92, the dominant research paradigm in the viral paradigm. Everyone says: "it's virus, kills the virus." Other scientists are saying: "well, O.K. it's virus, but with other disease, we are able to make the body kills the virus. So, we should do a immune system research. " Within science, virology and immunology are not integrated. So, from the standpoint of bio-medical ethics, it was literally not possible to conceptualize a research paradigm, a research structure in which you could compare immune-boosting drugs and antiviral drugs. There was no way to do that. All you can do is to compare an anti-viral with another antiviral. If you start messing with immune system, and you are changing the conditions under which the antiviral operates. In terms of bio-medical ethics, this great standard makes it so hard to set up this kind of research. We are not supposed to be messing around with the body while you are researching the drug. The body just sits there, the drug in, and measures the result. If you start pushing the immune system up, and the result of antiviral are gonna different. So, for six years, because of this problem in bio-medical ethics,f this problem in bio-medical ethics, you couldn't do immune-boosting research. There were a few little tiny studies that made AZT plus immune-booster compared to AZT alone. But, you couldn't do an immune-boosting drug on itself. In 82, finally, the doctors of the world said, "well, six years we haven't come up with the drug. We got one kind that works. O.K. Not that well and it's got ten sisters. Some of which worked little better. But it's essentially the same drug. All these drugs we read about in the newspaper entail protease. They are all basically the same drug. So, in 92, the doctors and researchers said: "this isn't going too well, may be we should consider something else." So, in 92, it became possible for the first time to begin doing other concept of research. It's still true that about 75% of the researches are AZT analogue research.
Lee: What about the compound Q? A kind of chinese stuff?
Cindy: This is an interesting moment in the whole story. The reason that the research practices changed in 92, in part have to do with compound Q trials. Until very recently in the U.S. and still to a great extent, if scientists did not make it, it is not a drug and it can't really be studied. So, if it's a vegetable, it's not a drug. Because compound Q is originally a "chinese herb", while the official science is going on. Therhile the official science is going on. There are also radical doctors and people know a lot about science, so they say: "to hell with the official researchers. What's it going to do on our studies. They are not helping us. As far as we can tell, AZT is killing as many people as helping." So, we have an ethical duty and with our ethical rights to go outside that system. This is a major break in the kind of ethical consensus around the drug users. It's highly controversial. So, there is original studies done by a handful of doctors and researchers and community people. And they were quite well-designed studies. The problem was that they were not government sanctioned. And the other problem was the first thing that they study was not really the drug from the standpoint of government. We name compound Q to make it sounds like it was a proto-type drug or some kind. And it was very very exciting. I remember when the trial was going. We have people in Boston who also want to try. So, people would volunteer, they would say: "what the heck! I think I am going to die anyway. I might as well give a shot." But, I want to emphasize that they were highly controlled studies on the Western scientific model with review board and the whole thing. There were just underground. This would be about 88 and 89. Compound Q seemed to work O.K. with some people. Lots of stuff work in the short run. It's also highlk in the short run. It's also highly toxic for other people. So, there were four people who died real suddenly in San Francisco. There was an FBI investigation of the whole thing. So, what happened was the FDA and other government branches basically say if you can turn this into something that can have a little more regulation, we won't try to stop you. So, the thing called the community-research-initiative emerge. They are local organizations, local community based collaboratives between researchers, doctors, patients, community activists, and drug companies, particularly small pharmaceutical or small chemical producing companies. They think they have something that could possibly be useful. It makes them widely accepted in the community. These groups do a lot more research on treatments for opportunistic infections. The community- research - initiatives have helped in a way produced some market. And the place where this other classes owhere this other classes of drugs can be researched and got to people who actually needs them. So, it's been a really really good solution to the capitalization of drugs and also to the problems of the ethical needs in doing drug research comparative studies.
Lee: What about your personal experience with Aids? Do you want to share with us?
Cindy: I have been asked that question a number of time and they all striked me a very odd question. The reason is because in most urban environments in America, you just know tons of people with HIV. I just know lots of people. So, I don't really think in terms of all those people who have Aids. A lot of people who were my friends early in the epidemic have died now. There is a whole generation of political activists, in particular, died now. There were people who have been my friends for years and years. They were only recently become infected who I would like to smash them in the head. I am furious about them. " What's going on? " So, for someone who lives in the major urban environment, your relationship to people with HIV is very very multiple. There is undergraduate student of mine at Temple in particular who either through drugs or sex had HIV, who is not uncommon. It was not uncommon for the student to talk about it. I taught this undergraduate class, probably every semester, there was at lclass, probably every semester, there was at least one came in at some point, let to be known or told with HIV out of 60 students. I am sure there were more in each class. So, it's fairly common. There are a lot of people chosen not to be tested, who might well have HIV. I mean most of people don't believe the drugs work, so why would you test for something that there is no drug for. I wouldn't want to know, if I don't feel bad now. I don't really want to know. So, people make different choices about how to handle that.
Lee: One thing that interests us very much in your writing is a kind of "Aids paradigm-shift". What is it in your mind?
Cindy: That is something that I'm still thinking about. I think what I 'm thinking about now is more how should we think about paradigm shift. Paradigm shift is a concept., a useful one. In some of the work I have done I tried to look at the way in which virology and immunology take a more or less space in research. In the last few years, I have been looking at tropical medicine as a global model and immunology as a global model. It is true that we could define paradigm at some point, if Kuhn was right. I'm wondering whether it works now, for a variety of reasons, for we may be continually in a state of incomplete overlapping models. Paradigm shifts seems to imply that the periods of time there is a kind of coherence theriods of time there is a kind of coherence that is achieved. Whatever lower level discrepancies or contradictories, there is this kind of overall coherence. I'm not sure that will ever happen again in the medical science.
Lee: So, you mean these variations of Aids research wouldn't bring out a new type of coherence?
Cindy: I think it's actually infecting overall the medical world, partly because for the most part, we are in the new game now. We are in a environmental problem, in a neurologic problem, and a slow-acting pathogenic problem. For a long time we know fast-acting pathogenic. They wipe out millions of people within three years. Now, we are dealing with things that progress more slowlier the time. One could say science will shift as research paradigm to accommodate the fact that we now have slower- acting agents. I actually believe that in environment and in knowledge, they are so filled with social thinking, non-scientific thinking that I believe that they will operate differently in different parts of the world. I guess, if I have to predict, in fact, science cannot produce a new central research paradigm, a governing model for the case we found ourselves in now. And what we will see is a kind of local research rules, localized production of knowledge around certain disease phenomenon which are not going able to be generalized or logically integrated withto be generalized or logically integrated with other research on other diseases. They will have to think of the body as not a unified thing. That's operating differently in relations to some diseases and doesn't in relations to the other.
Lee: So, you mean what happened in one region is not helpful to other region?
Cindy: O.K. At this point, we desperately hanging on to HIV as the unifying element in this disease phenomenon. We are saying it's just manifest differently. Historically speaking, most of the diseases we have are like hepatitis. Hepatitis really shouldn't be called one thing. It has subcategory ?hepatitis A,B,C,D,E, Some are viral, some aren't. They are so different that the name hepatitishe sub-varieties just are not the same class of thing. If we want, we could totally re-name it. And what previously being considered the same disease will be considered as two different diseases. It is only because of historical legacy, they considered hepatitis as one disease. It's very likely that this will happen to HIV. There are really different responses to HIV, and it may be that it just doesn't make sense to particularly think HIV as unifying those disease categories. The World Health Organization at various point and time has promoted the idea Aids spectrum as a reclassification. Since it's not HIV that kills you anyway. It's unclear what the relation HIVou anyway. It's unclear what the relation HIV to the other elements. So, there are a number of definitional problems which, at this point, we can desperately hang on to the old model. But it might make more sense to this different definitional instructions. We are coming up with all other disease phenomenon which bothered us for years and years, and suddenly the thinking around HIV, this multiple-element model, a kind of basic thing goes wrong plus a series of other things. That's a new model. So, I don't know how long we can hang on to this idea that there is a cause- a little virus that comes back and takes us. May be new research paradigm will emerge, we will reorganize all of these and get fixed. But, my guess right now is that it won't happen. There is no longer straight line between biomedical knowledge and policy. This whole series of re- conceptualization of the body and the management of the health is not holding together anymore. I am convinced by Loytard's argument that there is nothing to do with any good reason why science needs a contralized organized principle. Physics seems to be doing nicely without one; Math seems to be nicely without one. Why can't biomedicine do without one?
Lee: You just touch upon the idea of postmodern development of medical research. Would you like to say more about the postmodern world of Aids?
Cindy: I guess the caution I will have is not to take up postmodern model as a kind of mysticism. I think what I am not saying is that diseases are not real. The diseases are totally real. What's not real or what's not necessary, or what's not completely enduring is the categories. There are tones and tones of cases throughout the modern research period where people discovering document then which turned out not to be there. By the same token, people search and search for years to find something can't find it, declare it not there, only to find it later. The "Endocrine system" for instance, was for years people have trying to find and they decided couldn't find it. They said it is not there, it's not real, and they came up with 'hormone'. Somebody found 'hormone'. Scientists know that their knowledge is always preventional and they find things that are not there and they can't find things that are there. So, what is rea there. So, what is real changes over time. The problem is how to live in the body that are having these things happening. And how to produce this policy. It seems to me that thing now is to really figure out how bio-medical ethics can proceed in the absence of the kind of scientific truth- claim that nobody in the hard science think we can have. Nobody in Physics believe in the truth anymore. It's only people in the `softer' bio-medical side that think you can find an absolute truth upon which to base policy. So, people on the bio-medical side, which is applied science arena, to figure out how do you make up ethical decisions when you don't really know, can't be completely sure. Even the things you think you know most may be a little bit wrong. How do you give people drugs when you can't be really sure that they are going to work well. But with Aids, we were in such a state. We were inclined to let anything that looked like might be able to produce knowledge to come forward. So, we'll have to cope with the situation where knowledge was always very very relative. Particularly between 83 and 88, if you look at medical journals, you'll find very little publishings on Aids until 86 or 87. It's because no one could evaluate them. Research board said: "who were we supposed to call?" In 86, the secretary of health in the U.S., who said:" in the case of Aids, we don't know how to evaluate f Aids, we don't know how to evaluate it and it's better to have more research out in public than to be as strict about that research as we know about other research." It's a very very dramatic change from the usual standard. In general, I mean, up until that point, the ideal had been that is unethical for a medical journal to publish unreviewed studies. So, in 86, there was a decision on the part of scientists to say the condition of knowledge is changed. We don't have a foundation from which to evaluate this research. So, we have to do the one thing we say we never dohe published research that might be wrong.
Lee: Are You insinuating that the Aids research doesn't have foundation right now?
Cindy: I think right now a really really good project with this for a good `think tank'io-medical activists, researchers who totally understand the Aids stuff get together and say :"do we know enough about Aids to begin substantially changing the publication practices? " Informally, the journals began making stricter decisions. It will be a good thing now as these researchers get together and say :"what does it mean now? We have for ten years been publishing article on this medical area using a different standard. Can we go on as a research ethical community and community of clinicians? Can we tolerate a looser publishing standard? Should all media looser publishing standard? Should all medical publishing be opened up? If so, what are the implications of that?" Lots of clinicians read JAMA(Journal of American Medicine Association) and that's their standard and care. If JAMA says everyone should be taking 2 Aspirins a day to prevent strokes, the doctors do it. So, JAMA is not just an old journal, it's a journal that has direct implications for the patients here. So, this discussion should be had now. People should say it's not an exceptional case. Aids is not an exceptional case. We are in a new research clinical world.
Wu: I think the point is that it's not so easy to get the drug licensed in the first place. As far as I know, the Aids activists sometimes will push the research to license a drug which is not really clinically tested. It's overhasty in a way by the Aids infected people.
Cindy: There are two issues. The one is how drugs licensed for one usage can use for something else. The other issue is how drugs get licensed in the first place. Because I sat on institutional review board, I felt very cautious about those early efforts to get drugs push through. Feminists in America just feel really really strongly that drug needs to be licensed. It's very bad to let drugs go through. So, when gay men with HIV saying to me: "give us drugs" I would say:" Oh! It's not always a good thld say:" Oh! It's not always a good thing." One of the real challenges to clinical trial that Aids presented is that if you have a large class of very well-educated people. They have gotten informations from Aids activist groups. In the traditional trial, You have this altruistic person who says: " O.K. you can try this drug on me. I trust you. You are not gonna to do anything bad. If bad things happen to me, I am giving my body to the greatest good of science." And this is the logic. It's an individual trading a risk for a society. With Aids trial, the treatment-trust is totally different. There are a bunch people saying:" I am going to die, if I don't get a drug. I'll try anything. I'm so interested in this drug that I don't really want to placebo, so I am going to enroll several different drug trials under different names." So, you have people actively, strategically engineering their way through the drug trial system. They were not the altruistic, giving my body to science kind of person. I think it's clear now that fantasy was probably never really true. Most people in drug trial were probably much more invested than the drug trial of this fantasy model. Obviously most drug trials are on people who are having disease. It's unrealistic to expect a person with a disease to be altruistic. Someone would go in for their AZT trial. But, it turns out that they are taking six other drugs.hat they are taking six other drugs. So, the AZT trials themselves would not be valid. None of the drug trials are valid. The CRI(Community Research Initiatives) are actually better research because the people will tell researchers what else to take. They are not pre-empty when giving the drug. So, I agree that drugs are getting push through the system too quickly. I think one solution hasn't been well utilized is computer modelling. It's been my understanding from a number of people who I think pretty good scientists that there has been big enough data base with like a lot of histories of so many people that you could like simulate classes of trial subject against which to run actual human trials, so that, probably, we have enough data on real bodies to compare trials. But, again, the American, French, German Regulationshe three dominant researchhere are so much apparatus, ethical and policy apparatus organized around this traditional ideasest-tube, too toxicity trials, too acidity trials, controlled group trials. You have to do a lot of work to change that. And again, if I were in charge of the whole thing, I would say : "get the damn researchers together! Get the activists together! Get the community people together! And find out what everybody knows about this process. Re-design all the process. Act up is being really effective, but they gone out of piecemeal." They would get rid of theemeal." They would get rid of the toxicity tests. We will just take it. Get rid of the placebo control. What they need to do is redesign the entire thing from start to finish. Figure out where is really useful to take out some steps and where to add. It shouldn't take that long to get drugs licensed.
Lee: You have been in Taiwan for sometime. What do you think about Aids problem here?
Cindy: There are many ways in which you can't interpret the development of things in Taiwan as being just like the development everywhere else. There are gay cases. There are drug using cases. The strategies people have tried here in terms of activism are quite similar to strategies used in most places outside the island. No sort of act out type things has been launched here. One of the most fundamental differences between Taiwan and U.S, and between quite a few countries in the U.S. have to do witries in the U.S. have to do with how HIV tests is done. Lots of people could get this in the U.S. now, because it was an early victory, and it was a boring victory. But, we fought like hell from the minute testing was available to make it not mandatory, to make it not even possible for someone to test you without your knowledge and consent. So, we really really fought hard on the consent issue. The red cross was fighting it out regarding blood donation, because they feared that people would, in attempt to find out if they had HIV, to come in and give blood. According to the current standards, if you have a communicable disease, and it turns out on the blood donating event, they will call you:" Gee! We were really sorry tell you, you have got hepatitis, please don't come in and give blood." We were all saying :"This is really crazy!" The thing to do is just to test each blood. Don't test the person. You can't force people to know this. A lot of companies have blood drives., and you cannot go. If you can't go, people will ask: "What's wrong with you? You must be gay. That's why you don't want to give blood ." They go to Army bases and just get everyone to give blood. So, there is a poor solider. He thinks :"Oh! May be I shouldn't give blood. But he can't, because everyone would say "Why won't you give blood?" So, there are all these debate around how to handlall these debate around how to handle the HIV testing and we were successful of making it not mandatory. We got the government found sites we could go and you could be anonymous, you didn't have to give your name. So, they were more than confidential. And there were a number of cases where government officials got a whole list of names. So, people worked really really hard around that. We've got it make so that you could not be forced to be tested, if you've been forced to test it, you could not be forced to know the result. That's been changed somewhat. It's on the basis of the ability of the individual to discover her or his HIV status without anyone else finding out that possibility. Here, men in particular, are tested a whole bunch of times. They don't even know it. You are tested when you go into the army. I believe that they test people when they go into school. If you have any kind of immigrant status at all, you are tested. So, there is lots and lots of testing goes on here. People don't even know they have been tested. I don't know how they have been notified. They may or may not be, as far as I can tell. The control of that piece of information and the consumers' ability to use that information to get health care and not been discriminated against is totally not present in this blood test. To me, the number one priority here is to get testing reconsidered, so that the government does not control tthat the government does not control testing, so that people can't be forced to be tested. Until that happens, I think, very little else that has happened in the other developed countries can happen here.
Ning: I have another strategy question. Here, people stress the difference between HIV carrier and Aids cell. It seems that, because Aids is stigmatized, so as if we were inventing a new type HIV. So, right now, people here say: "Let's not talk Aids anymore. Let's talk about HIV. And it seems to me that it's kind of problematic. I wonder if the same thing happen in the State?
Cindy: The history in the U.S. is a little different. In the U.S. all we have, at first, is Aids, then we discover, "oh! It's a virus!". And then, we have a bunch of people who have virus and were sick. At the same time, the Europeans were a sort of saying it's really dumb to talk about Aids. It's like the last faith in a long-term process. So the Europeans dump Aids very early on. Europeans activism was organized around HIV as a expected disease. This is a more accurate medical conceptualization. In the U.S. the attempts to look toward HIV conceptualization was applied primarily by insurance companies. While Aids were discrete medical categories and the American insurance was organized around the discrete categories for which there are specific treatment. Sories for which there are specific treatment. So, it's really because of the insurance companies in the U.S. The army which is a major one of researchers always used HIV spectrum nomenclature. There is no Aids anymore. For this issue about stigmatization. I wouldn't worry about that so much. I would worry about more the relation to the way the medical system will take up the disease. And here, you have a kind of national system. If you think there is a danger that one classification system than the other, it's going to prevent people from getting care, then you want to go with the one that maximize this care. I think that HIV spectrum was a better conceptualization in terms of body care. People really need to get these drugs at the infection of pneumonia. That's the most important thing. You need those quite early on. You need those way before you are sick at all. If you are infected in year 1, probably by year 5, you should start having that drug, that series of drugs. If you don't, you'll probably die year 7 in the way.
