Get Used to It: Ep. 22, "AIDS Today"

oh [Applause] [Music] hi i'm sheila james kewell your host today for get used to it get used to it as i hope you know is a gay and lesbian issues discussion show where we try to explore for our community about our community and with members of our community issues that are deeply important to us and today i would say this is an issue probably the most deeply important to many of us in our lives we're going to talk about aids this is our third season and we've never done a show on aids and i think that that actually is indicative of much of the attitude not only of our community but just about everybody about aids we hear about it every day yes but do we really know what the current status of our research is of our sort of philosophical political lives and really what we have to i guess the word would be look forward to in the future people are talking now about uh fatigue about despair about the kind of longevity that we never thought that this holocaust was going to have and today i'm very proud to introduce to you the three people i wanted most to have on this show actually to talk about aids first phil wilson phil who's been on our show before who is the director of public policy at aids project los angeles and as you probably know the founder of the black gay and lesbian leadership forum welcome phil nice to have you back good to be here uh we also have dr mark katz who is the regional hiv physician coordinator for southern california kaiser permanente and also the medical advisor to being alive in shanti mark welcome thank you and our third guest mary lucy who is the interagency hiv study coordinator at prototypes which is a center for innovation in health she's the vice president of being alive which is i should have explained before um is an organization of people with hiv and aids and has been a member i guess members the right word of act up an a an act up activist for five years welcome mary thank you i'm very happy to have you all here um as i guess you could tell from my introduction one of the things that i know people watching this show and probably watching television in general really would like to know because you really don't get it from the papers you really don't hear it on radio or see much on television is kind of where are we now in in this epidemic what are our current issues and in a way what are we going to do for the future phil i'd like to start with you sort of the your work really takes you into a the philosophical the strategic the um you know the historic uh planning realm i guess in terms of the epidemic what do you see is that really what's happening today where are we with this epidemic well you know i've been saying lately welcome to the post november 1994 elections um and um i think that the the the impact of the 1994 elections are going to reverberate throughout the aids community all across this country from sacramento to los angeles to washington there's a new day in a lot of our legislative bodies and unfortunately i don't believe that in many ways the change is going to be in the best interest of people living with aids and hiv disease is that an understatement i mean people are sort of panicked about this they're talking about ryan white won't get you know reinvested i mean are we are we in for a major defunding well you know we've always been in a fight for our lives you know uh and so it gets a little old to say that but we are again in a fight for our lives you know we have a very very hostile congress a marginally hostile state legislature present company accepted excluded from that of course but it's going to be a battle in addition to that there are some fiscal realities that it really wouldn't matter who was in control you know there's less money to work with in sacramento and in washington than there has been in the past in addition to that many of us are tired or sick or dying or in the middle of watching our friends get sick and die and it really in some ways can be very very disheartening there have been a couple of uh well probably more than a couple but a couple of conferences in which people have have gotten together to try to talk about what what's different for us uh and i know i've heard you talk recently about sort of several of the aspects what do you see as different in our community and uh just just in terms of what we have to realize and face well you know one of the things that's happening is that there's beginning to be a critical mass of people who've come to the conclusion or decided or realized that the epidemic is not going to be over or at least we're not going to see the end of the epidemic and that provides the possibility of two things happening one is an opportunity one is really kind of a devastating depression you know the opportunity is that we can give ourselves permission to do long-term critical thinking strategic planning before it was kind of heretical to talk about long-term planning because we couldn't admit that there was going to be a long term to plan for and to do so was to create industry or to not be interested in fighting the epidemic but as more and more and more of us either like i said realize or resolve or decide that in fact this epidemic is going to go on uh we are able to do long term planning and the truth of the matter is if you don't plan for the long term then you guarantee that there will be an issue that you'll have to deal with for the long term so when you say heretical you mean it was it was heresy for us to say this is anything more than a detour i mean we were gonna do our we were starting this movement we were lesbians and gays primarily not quite gay lesbian yet um and this came along and well of course we have to respond and we have to do what we can but we're gonna take care of this uh sort of like a 30-minute sitcom on television it'll all be wrapped up at the end you know we'll all we'll find a cure and we'll get back on well absolutely most of us myself included you know we thought this is something that's really really important and i'm going to take time out from my life and i'm going to work on this and then someday i'm going to go back to it or the second thing that that that was in a lot of our our minds is that if i work on this then maybe that will be payment and i it won't happen to me it won't touch me in a personal way well guess what you know no no 13 14 years 15 years later you know we're not going back to our lives many of us have forgotten what those lives were like you know and and that's starting to settle in and many of us have have paid dearly and still the epidemic has affected us so uh we're realizing that this is not going to be a detour this is not now something that is separate from our real lives this has become uh our lives and that can be unsettling and when people talk about despair i heard this term a lot i think there was a whole conference on it in texas aids despair citing some alarming stories about the so the behavior of some of our youth in terms of their willingness to have safer sex or not and people thinking i think it was partly what i hear you say is we thought if we if we worked hard enough i mean this is the truth of any community isn't it god will reward me and we will overcome well you know um when chris was dying i wrote a poem where where a phrase from the poem was that it's believing that if you work hard enough fast enough long enough maybe he won't die no it's the anger when he dies anyway it's knowing that no matter how hard how fast how long or how much you loved him you could not save him you know and that's one of the realities that we that we're dealing with and consequently now a lot of the things that we've talked about in the past have been things that we can do if it's a finite period of time you know people can change their sexual behavior if they people can do anything if they don't have to do it forever if they don't have to do it forever if they believe there's a light at the end of the tunnel now and once you you remove both the maladaptive and the adapted denial because i believe both are there uh you remove that denial and you lose both you lose some things that we need as well as some things that that we do that harm us well mark some of the anger seems to me has been directed at our physicians i mean you were supposed to cure us weren't you absolutely so we thought we would you did think you would i mean i think we all sort of thought at least at the beginning uh and that's really a major element of it is that we thought we would overcome it we would overcome it with our work with our research we would get funding we would you know we would fight we would do street work we would do education and everything so what is the current status of sort of our medical picture in terms of research treatment how you see it going well medically i see us as entering according to phil's paradigm almost a third a third wave or a third stage of the epidemic we all remember that back 10 to 15 years ago a person with aids which was then usually pneumocystis pneumonia and or capacity sarcoma went to the hospital lived a few weeks or months may perhaps came out relapsed and died within a few months i think most people would agree we have made progress medically the first stage was that stage of just not even knowing about the disease then we developed a set of drugs that we thought would considerably add to people's lives in length and quality we develop medications to prevent pneumocystis pneumonia which statistically probably remains the greatest medical advent we've made in this disease and that's eight years old so where are we at now we've spent seven years and have four soon five to be five drugs which will have been approved by the fda for treatment of hiv and the paradigm i always draw is they work at the exact same stage in the life cycle of the virus there are 15 other stages in the life cycle of this virus which we understand at this point should we have spent the last seven to eight years working on four to five drugs that do the same thing or with leadership which we apparently did not have should we have been looking somewhere else there are some harmonious things happening now we can say that people with hiv in the microcosm a person with hiv aids seems to be living longer but along with that living longer comes a the question of quality of life yes i can live longer now and as my eyes start going on me i can get one or two or three or four different medications to prevent the progression of cmv retinitis but i'll be living every day wondering when will i go blind i can live long enough to prevent the infections from occurring in my brain but perhaps not to prevent dementia from occurring and the last thing i'd like to say is that even if one feels that as an individual we're doing one is doing better i.e living longer which studies indicate there's not been a tremendous increase in change in survival time in the last few years basically we've plateaued we need another big break now and we don't yet know if the protease inhibitors the new class of drugs which will probably be approved in the next year are going to add to that and for each person if living longer is something that will happen now compared to 10 years ago we all know that there are so many more people who are infected and ill that i think the possible benefit to the individual in the microcosm is easily washed away by the fact that we look around and we all know dozens and dozens of people at accelerated stages of the illness so it's sort of like you you're saying that even though individuals may live longer and i i would tend to disagree with um the fact that this is not a wonderful thing for that individual though i do understand quality of life but the numbers are so much larger that in terms of our approach as a society clearly we haven't accomplished what we thought it's just like there's it you know this ever ever ever ever increasing stream of people um sort of being thrown into the river right and and we're still we're fishing them out you know sort of sooner though we still lose them eventually right and because uh 10 to 15 years ago someone with aids lived an average of six months and today three years that means there are five to six times we all know five to six times as many people living further into the stage of their illness and i certainly think that living longer for most people affords them certain benefits and advantages but the point i wish to make is that along with it comes a new wave of anxiety not when will my pneumonia come back or when will i be disfigured by ks but will i go blind will i become demented and i see people all the time patients and friends living with the hope of yes i will live longer with this than i would have eight to ten years ago but the threads of anxiety with which i have to deal every single day are greater and greater so do you experience the rage from your patients that medicine hasn't been able to solve this absolutely i think that the azt and antiretroviral story illustrates it fairly saliently we told patients in 1987 that here was a drug that looked terrific and i speak of azt specifically but i'll speak of its cousins ddi ddc d4t as well we gave patients a lot of hope and all through the epidemic things have come up that have looked good compound q in 1989 hypothermia treatment in 1990 things have come up again and again and we the practicing community have been on the side of the patients we've gotten excited about these things as well patients have prevailed upon we more alternative thinking physicians to try new things with them and what happens many of these hopes have been squashed and perhaps the healthiest patient that i could think of today is someone who approaches this with some degree of hope but a very cautious sort of hope maybe this will work for some people i don't know if it's going to work for me unless i really sort it out and we all know there are fraudulent treatments that have been put out by health care and non-healthcare communities for years it must be weird for patients because normally if i go in for something that i have even if i think it's going to be terminal i don't expect my doctor's going to die before i do but in our community often it's the case that people are also losing their physicians right i mean people go crazy enough when they you know their therapists move to another city i can only imagine what it must be like to think about your health care provider and whom you repose so much faith um and thinking well you know this guy's going to pre-decease me maybe what do i do exactly and i would estimate that a maybe as many as a fifth quarter a third of people who practice a lot of hiv care in this community are themselves hiv infected and again as you say the repository of hundreds to thousands of lives we don't expect our health care providers to be battling the same thing we are and we haven't really identified new physicians or uh to to to come into the practice it seems to me as though there's enormous amount of fatigue in the medical community as well that we thought probably you thought oh there'll be just thousands of new doctors that'll really want to do this but as i see it that hasn't really been the case that's true we expected 10 years ago that there would be armies of health care providers who wanted to be dedicated to doing something that was really meaningful and instead through a combination of homophobia stigmatization would be health care reform other issues burn out anger we haven't found it and i would say that in los angeles 50 percent of the people involved in the large body of care of hiv patients were doing this 10 years ago and most of the rest have been doing it for years we're waiting we're waiting for the troops we're tired we're waiting for new people to come and a study that was published a few years ago of new residents people just out of medical school in new york city showed that they absolutely were uninterested in being in places that had huge numbers of patients with hiv even if the reason be they didn't want to deal with the same disease day in or day out it's a reality of the world well mary this has certainly been perceived by everybody at the outset as a man's disease gay man's disease it was the gay flu or whatever i think they called it and i guess it's certainly been our experience over the past several years that we we've had to learn this is not the case what do you see as the circumstances now for women with hiv in terms of their access their even being identified their ability to get treatment and sort of you know how are we doing well if you look back on history the first documented case was a woman who died from aids on ford island so i think that people tend to overlook that the gay community has been impacted like no other community and i don't think that we need to try to soften the blow there but as far as women go we're about 10 years behind we just now got our first epidemiology study to look at disease in women with hiv the min max study the multi-aids cohort study has been going on for about 13 years now so as far as medical treatments and stuff we women usually go by the same protocol that the men go by because we just don't have the research there to base what treatments are needed and what not so we use what has been learned from the from the men's community but we're not really identifying aids in women as soon or as early as we are in men no women are diagnosed later on in the disease i mean i heard someone tell me the other day and of course this is one of those friend on the phone throws a number out but that something like 40 percent of the women who are identified as having quote full-blown aids were identified after their death as as having aids why do you suppose this is well i don't think that women think they're at risk women do not have control over um barriers it's usually a man who puts a condom on you know so there a lot of social factors that play into it but also too is that our government has put out very strong propaganda the centers for disease control put out strong propaganda saying women cannot get aids on the cover of cosmopolitan magazine said that if you do it missionary style women cannot get infected you know so these things carry over and plus they're an excuse you know what i tell people is that you're responsible for your body don't worry about everybody else's worry about your own body and if everybody worried about their own body and had enough self-respect i think that things would be a little different if you had control over your body too if you have control over your body i um a friend of mine who works in a an agency with that's associated with prototypes ruth slaughter who's been active in the battered women's movement for 20 years told me that a hundred percent of the women with hiv with whom she has worked or come in contact are battered women that the as an aspect of their abuse they might be raped by a partner who's hiv positive that that it's you know it's it's another way to to contract uh or to to contract hiv and i wouldn't be surprised because women are at risk in very different ways heterosexual women and also the opportunistic infections are different are they not i mean it feels to me and again i'm i'm a lawyer who talks about you know everything and has an opinion of everything but knows very little about medical the ois are pretty similar this there's early signs that are different chronic yeast infection vaginal yeast infection where men will experience thrush which is yeast in the mouth women will experience vaginally chronic persistent hard to treat you know if you look for those things you know um you can diagnose so shouldn't we look for those things i mean that's our early sign it's not what men have you know if women get yeast infections they say well you know i'll just go to the drugstore and buy some of this over-the-counter stuff i never would think of hiv right and when they did release that drug over the counter we ask them not to for the simple fact that women would be treating hiv at home and not knowing that they were infected as far as opportunistic infections go i think that there are some that are more prevalent in women i don't necessarily know if they're different but esophageal candidiasis is much higher in women than it is in men i think women don't get early treatments so they're usually diagnosed when they are diagnosed with hiv they're diagnosed with an oi along with it that's their symptom their sign so but i'm not quite sure that we uh cervical dysplasia is very prevalent um you're 96 percent of the women with hiv have some degree of cervical dysplasia but cervical cancer is a very slow progressing cancer but the point is is that we don't detect it we don't look for it so it progresses to a stage where it's invasive well talking about the cover of cosmo and how the mythology that women don't get hiv the the deepest mythology that i know in our community is that lesbians can't you know get hiv i actually think that's pretty egotistic of the lesbian community to think that they're the only population out there that is not at risk you know i think a lot of heavy denial plays into it also i think that that you have to um you have to to be able to communicate safer sex with your partner so if you're looking at somebody you have a relationship with i think it's easier if you're looking at casual sex it's very hard to practice safer sex if you have different sex partners but and i think that due to the fact that um some people are very lazy about it you have to work at it it's something it's a relationship that's within itself and this is a community that's been working in hiv right as caregivers as caregivers so you think we know better you would think so but there is that mythology don't you think i mean it's also the issue of of class and race and and and the issue of substance abuse you know um at least as i talk to both lesbians who are working on the issue of lesbians with aids and talk to lesbians now it seems very very clear that the denial within the lesbian community is connected to the fact to those three those three things class race and and drugs you know that there there also seems to be denial around uh how um uh common drug uses in the lesbian community and women not wanting to deal with that uh there is a reality that a a large percentage of of women with aids are women of color and the issues of race come to play around will you unpack that a little for us as long as we're going to talk racism class we'll use the word unpack that's okay right um how does race and class impact this are you talking about people not admitting explain a little bit well in that you know the as as you look at all of our communities you know that there are there are those people who are opinion leaders and and political leaders you know and and and often you know and i don't think that this the lesbian community escapes this often that population tends to be you know middle class or so or has aspired to become middle class and tends to be white you know women with aids tend to be women of color and often tend to be poor women and so uh when you when you compare the two populations you know and you look at you know the um kind of opinion leaders and what have you you see kind of there's not a match there there's a disjoint that's going well it's also a matter of access i mean mary was talking about we were talking earlier about a study that was reported um very recently and with which mary a study which mary's not impressed with i found out uh at all comparing apples and oranges well women die 33 faster than men active has had a chant for years and years it says aids is a disaster women die faster you know it's an access you know we don't die faster because the disease manifests faster in us it's because of access and you mean we don't go to the doctor or we can't get to the doctor or we don't you have to have usually have some kind of insurance to get to a doctor but you know i'd like to touch on something phil said too is that if you look just recently have we had prevention messages going into poverty stricken communities that has never been a real big focus so when people stand back surprised that all these people are infected you know you look at them and say are you crazy we've never spent any money we've never put prevention messages into those communities if you're going to the cities of new york now you know everybody's complaining that the the gay men are still getting infected and stuff if you go into gmhc you're not going to find a condom in there if you go into the bars you're not going to find condoms people aren't putting out the prevention message like they used to in those communities they've picked other communities instead of trying to blanket you know spread the prevention everywhere they seem to get stuck on one sex section and then they go over to another section and you have to continue prevention it's not something you go in and hit and split you know it's the combination and on the issue to finish out the loop or unpacking the issue around race and gender and women know that you know women of lesbians of color now experience their sexuality often differently uh than white lesbians now there's not as large of a separatist community now when you look at statistics for example of until recently of lesbians with children you know lesbians of color were more likely to have children as a result of relationships with men i mean there's a big thing in among white lesbians these days of having children but that's a different phenomenon and poor and poor lesbians are less likely to live in kind of these enclaves you know and are more likely to live in in in the larger communities so those are some of the issues of race and and gender but we're going to take a break and and come back and i want to talk much more about this the prevention i want to come back to the substance abuse questions too because i think you've all raised issues that of the relationship and and how we may or may not be doing and talking about what we should be so we're going to take a really short break but you better come back because it just gets better i'm out here every week talking to people about sex my message is simple if you're gonna have sex a latex condom used consistently and correctly could help prevent the spread of hiv and other stds people out there gotta understand that's why i'll go anywhere to talk about latex condoms [Music] even into your living room hi welcome back to get used to it today we're talking as i hope you already know about hiv and aids where are we medically philosophically strategically historically and what are we going to do about it my guests are phil wilson from apla dr mark katz from kaiser permanente mary lucy from being alive and act up welcome back um we were talking about earlier in the program about this uh this notion of aids despair and i want to explore it a little more whether is this something that uh people are using sort of just to get out of the work or is it something that you really see this notion in young people they're sort of giving up we talked about how it's not likely that our epidemic is going to be over very soon is this an impact that you see on the people that you on on patients on the people that you work with is it a real issue i see despair at every at every level people who are not infected keep asking when will there be a vaccine they're tired of waiting when can i put this issue aside and will it not be an issue for me people who are early infected when will there be a good treatment they said we'd be able to turn this into remember the expression a chronic manageable disease like diabetes we were telling people to set seven to eight years ago the care providers we were thinking this will be over by the earlier mid 1990s we're tired of it people who are advocates for people with hiv who have the issue of political barriers now more than ever before i see despair at every at every level i also choose to be able to see that there's hope that everyone can look for but clearly at best it's a balance nowadays we've the despair is is everywhere well we have to be clear though that the despair and market is absolutely right the despair is there and it's real uh with good cause but people it's not the kind of despair where people are saying um i'm just quitting or i'm i'm giving up you know i think that this commit this community is absolutely committed now and the heroism that we see every day often just to get by you know and certainly in doing the work people are not uh walking away or running away or throwing up their arms but people are tired you know and they have cause to be tired we've done a lot of work in the last you know few years i should say you know of course people are going to get tired but when you're constantly mourning you know that exhausts you alone you know you're losing friends and and and co-workers and you know people every single day you know over periods of years and years you know you're emotionally going to get torn down you know it's like i i hate to do comparisons and this isn't a comparison but during the holocaust i mean people were of course they were despaired weird despair too this is our own personal holocaust happening here um i'm surprised that there isn't more therapy going on and we've lost our heroes too in a way and i i i certainly don't mean there are no heroes i think everyone who's you know left and who's working is a hero and yet you haven't seen as much of the growth of new activists and it as a matter of fact the mythology at least is just the opposite and what i guess i was referring to is you know sporadic reports of young men who say you know i just don't give a damn i mean i'm just gonna uh i can't live my whole life doing safer sex i didn't think i was gonna have to and i don't want to uh and a very disturbing notion which may or may not be true we're a number of young men who are who are negative saying you know um you get a lot of attention when you're positive you have a lot of treatment you have friends you have community uh i feel like i'm on the outside of that it's scary in in a part of that you know i used to ask the question you know who are the lucky ones those of us who are going to go or those of us who are going to be left behind and it is a question that you know sometimes is in the forefront of our minds and some and often isn't is in our subconscious now and it is one of the challenge that is affecting particularly young men men who have not known a world without hiv and aids you know i think that even though the period that we're in right now is very very painful and and the despair now is very very thick i do believe that it provides for an opportunity now that i think some of the despair we're experiencing is exactly what mark was talking about in that we didn't know it at the time but there was a lot of false hope you know there was promise that it was going to be over tomorrow now and the next day would come and we would say it's going to be over tomorrow and maybe now we can stop talking about you know a world without aids and kind of think about not even as painful as it is to say a world where we can live with aids but you know phil it's throughout history there have been generations and and more often than current where we expected to lose a lot of young people we lose them to famine we use them we lose them to war and every country or community or culture that lives in the middle of that kind of a war it really warps your life i mean it warps your life it's just like you said and you know you always thought you would come back from it but now we have been bent in a sense so much by this we live expecting to lose our friends earlier than when we were growing up we ever helped we would lose anybody you know our parents would get old then our friends would get old we would get old everybody would die in their time and it's not just you mentioned mary the grief of it which is a part of the fatigue but also um there was something i was thinking about when you were talking there's an interesting kind of birth of faith which also happens in a community that lives with death it is it's spirituality in a way i don't want to make too much of it but we have had to look for something sure i have never i've never had a patient speaking about gay male patients say to me gee if i could have done it all over again i would have lived my life not as a gay man so maybe i would have been free of this there is ironically the gay liberation seeds that we were looking for back in the 60s and 70s some of that has come through in in hiv in the in the 80s and 90s i also regarding what you were saying posit suppose this were a virus that dropped out of the sky and affected mostly women and men under age 40 but it were not tied into something as primal as the urge to be sexual whether it's to procreate or to enjoy whatever and it were not associated with people who carry in our society's eyes a lot of political philosophical social ramifications what i'm saying is that part of the baggage associated with this even if we were losing young people right and left is that it's the whole infrastructure of what hiv means it's that people associate it of course with substance use with homosexuality with poverty with with with racial differences et cetera a lot of people and and right and therefore there's blame and as we were talking as we were talking about yesterday people in this epidemic who newly seroconvert today compared to the people who found out they were positive in through 1985-88 have to usually deal with the whole additional burdensome issue of guilt and shame how could you zero convert you should have known better what did you do what did you do wrong as opposed to the people who found out they were positive in 85 and 87 who acquired the virus as part of their normal sexualizing living working etc the other part of that around the guilt and the blame i know for me when someone comes to me particularly if it's a friend and um who says that now he or she is recently serial converted i feel a tremendous amount of hopelessness now because every time someone comes to me with that message i take it as a personal indictment of the work that i've done for 15 years that if i had done my job properly you know you would have had the tools that you needed to protect yourself but see society is only going to put a limited amount of tools out into the community if you look at addicts right they're a prime example they will not society will not provide them with clean needles but they'll punish them for becoming infected we're we're limited as to what we'll print out into the communities but you i want to touch on something else you said as far as you know activists and and people in the fight i think the gay and lesbian community needs to take uh responsibility for breeding complacency for sending out propaganda that this will be over for putting so much faith in a in a in politicians to cure this problem for us you know i am probably one of the few people that is not upset about the republicans coming in because i don't think the democrats have done anything for people with aids and if it has it's been a minute and plus they lied to us they pretended that they were our friends and it's easier to know that those republicans are not our friends and now you have a target and now you can go after that it's very hard to attack somebody that says i hear you you know i want you to do more than hear me i want you to take that money and put it into medical research into basic science and clinton really has done nothing for people with aids he sat back and watched us die so i'm not i'm not upset about the republicans one bit at least i know that we have a clear target now well you know that's always been the sort of the the the positive stuff about activism that i've liked is that when you have a clear target when you have a clear understanding that no one's on your side but you and that's definitely been the case i think with our community from the get-go it's very much the case with women of color who are going through the same kind of blaming shaming we're not going to give you anything it's your own fault you shouldn't be you know sleeping with those guys or using those new needles or whatever but something else that you said earlier mary that about complacency um and and how you're not we're not doing prevention anymore and you mentioned uh you you know you go into these places you don't get condoms and we're not talking the same talk and i know mark you were talking as well about how we may get a message out but in the bars for instance you might say safer sex here have another drink and the relationship between substance abuse alcohol abuse and some of this i want you to say more about that sure well studies have shown medically absolutely what we already intuit that a majority of people who seroconvert today particularly in los angeles or at least in the los angeles community and probably true everywhere are under the influence of something alcohol marijuana opiates cocaine amphetamines etc so we have to remember in all the education we give people about risk reduction if they go out and get loaded what does it mean the baltimore study of young women which followed inner city women over seven years that was published a few years ago show that the two things which correlated with which women or young girls became infected were not education they all got the education it was women with substance use and women with lack of a family or social support system these are the people who who serial convert i'm sorry really careful about just putting more money into prevention i'd also want to add regarding what you were just saying that we have to remember though that part of why prevention has been a bust and part of why we've not done enough is in the very beginning the first thing that we saw were people dying of aids from the very beginning there's been this almost ethical imperative suppose back in 1982 we had said okay for those of you guys they were mostly guys with pcp and ks sorry you're going to live a few months let's put our money into helping people prevent from getting this virus which we didn't even know about then obviously that would have been ludicrous there's always an ethical imperative in health care to a lot funds to the people who are more ill and needed and i'm not saying i agree or disagree with i understand that imperative but it impedes our prevention efforts part of the other thing that happened is that no we practice what i call the serial monogamy school of education and prevention which means that we're absolutely committed to the prevention of the population that we're targeting today but we're not committed for a long time and once we change to another target we totally ignore the target that we we were we were taught we were preventing we're educating the day before so we go from community to community to community in this kind of serial way as opposed to you know a parallel strategy or a broad-based strategy where we understand first of all that many communities are interconnected you know uh and that we need to approach communities simultaneously you know as we do education and that every day a new person discovers their sexuality now so just because you educated quote unquote gay men in 1984 well there's a whole bunch of gay men who were little boys in 1984 in 1994 you know and so you have to educate them and those gay men many of them were in fact bisexual men who had relationships with women so you need to educate women at the sa at the same time now and some of those gay men you know use drugs and some of those women are drug users so you need to educate drug users at the same time now and we've never quite understood that well i think the segmentation of it is so it is self-defeating i don't think there's any question and um i was interested actually i was touched by something you said earlier that is really the subject that i want to have you explore for the rest of the program if you don't mind and that is when you said every time a friend ciro converts you feel personally there should have been something you could do in addition to probably what other people feel that mark was talking about which is what could they have done how could they have done this what did they do wrong it must be obviously very personal to all of you to be engaged in this work because this is your at the moment and probably for a long time your life's work um what is it like mary to be working on aids issues in hiv aids issues what brought you to this well i was diagnosed about almost six years ago i guess i had a personal interest in it too but i think that things that happened to me in that within that period i was treated very badly i had health care workers that would not touch me i went to the women's community they would not help me right and finally my lover and i said we're going to go to act up and within act up there were a core set of men who said look we're going to teach you everything we know and hopefully you'll survive and we want you to take it back out into the women's community and that's exactly what i've done so i am personally invested in it you know and i think that things have gotten a little better but i think that people are a little better and covering up their feelings too you mean to you personally to not just to me personally but to people with aids you know i i think that they're a little bit more trained on how they discriminate so but i think it's alive and well out there and i think we need a lot more street activists because if you don't have street activists you don't have people on the inside they can't do their job unless we open the doors for them so you know hopefully our next movement will be uh women activists mark you you also mentioned i mean it must feel i i don't know is this it's a it must be a personal thing for you too why do you come to this work sure um well the easy thing to say is i went into the profession i did to alleviate suffering and make people's lives a little bit better that's a pat answer let's take it to hiv directly i found in the early days of the epidemic my own fears about hiv and before the first time i took the antibody test in 1985 i spoke to to god to my to my spirit and said look either way i'm going to be doing this work for the next any number of years of my life um i'll make a bargain with you if i'm if i'm negative i'll put all this work out just for other people if i'm positive i'll work for other people and i'll also do it for myself so some of it comes from from my own bargaining uh secondly also from i guess my background this is not true only for jewish people but in the judeo tradition we say if you save one person you've saved the world and phil what you were saying before the despair you feel when a friend sarah converts i want to say that to the three of you sitting here you don't know how many times you've saved a life by having this show there may be a person out there watching it who will then use a condom or get tested and find out and not infect your partner you've saved a life you've saved the world the other thing that i do is i have it easy in a way as a physician i have a set of tools that while i can't cure people and can't make this disease go away if most of the people with whom i interact can say to me at some point the information you've given me has made it a little bit easier or you've given me a little bit of hope or a little bit of support the analogy that i use is a person with hiv lives in a room that feels very dark a lot of the time the typical medical model or the societal model is you come and you put on a floodlight and make everything better not that way with hiv if i can light a candle if i can be responsible for a little bit of illumination and comfort in that person's life i've done my job so what i'm saying is i think i've refined my goals incremental just a little bit you don't think you'll save everybody i mean that's it's the that's the hard thing about with friends is we have this sense of faith that i if i were a physician i don't believe i'd be able to have it because you have to admit to yourself you know it's it's it's we were having this discussion the other day if i if on my deathbed i count up all my successes i'm afraid it will take me a very short time and i'll be rather disappointed in my life but if i count up my efforts i probably will have a slightly longer list i hope and say gee at least you know i i did what i could i did what i could and i think that's all that's required but it has changed all of our lives i mean your life is so changed phil as you were saying oh absolutely you know 1994 was really a bizarre year for me and and for a lot of us actually you know i was saying to um a friend of mine the other day that one of the things that i find most painful working at the level that we work in this epidemic is that we know many of the aids poster people you know and and this last year you know uh marlon riggs was a personal friend of mine saint was a personal friend of mine brandy moore elizabeth glazer pedro zamora you know and and to to go through those deaths now personally and intimately and and then to have to experience it on television and in newspapers have been a very very painful experience the flip side of that is that um you know even as painful as it is when a friend of mine uh serial converse or even not a friend an acquaintance or even a stranger comes up to say even as painful as that is um you know i know that you know the work that we do is important and that it does save lives and and in the final analysis you know i have to believe no i don't know if it's true or not but i have to believe that we make a difference in our effort and in our spirit and in our integrity and at the end of the day i do what i what i call my sleep test you know and that is now can i sleep tonight and and i can sleep tonight if i know that i've done what i can do to the best of my ability and i've done it with integrity and i've done it in a fashion that i've not hurt someone said yes this mental health aspect of it is is an interesting one because we talk a lot about our physical health and we're concerned i mean certainly physicians are most concerned i think with the sort of physicalization of hiv aids and often we don't get the kind of holistic approach at least in the medical model the community i think has tried to develop lots of different ways that we deal communally as activists and you know even at the sort of grassroots level uh about the anxiety about the loss etc i mean it is a in in many sense it's a community brought together by dying and it is it's incredibly unusual not just for our age group but really sort of in our modern world we often at least in this country don't see it so we're not doing i think very well about our mental health and we have to sort of try individually to do it i i appreciate the use of anger for instance mary which i see you have in very healthy dose don't you think that's an aspect of your own mental health anger yeah oh there's nothing better than a really good demonstration to me it just you know i sleep the best that's a sleep test for me did i did i perform well did i scream to the top of my lungs that i torment that person for the day and then i go home and sleep definitely i think that people who let anger manifest inside them i think it's very very dangerous we've got to say to me all the time oh you're a pretty angry woman you're damn right i'm angry i have every reason to be angry and i think if every infected person in this country was angry i think that a little bit more would be done i actually have a funny chris brownlee story chris had a hip lock done uh didn't want the hip locked down went through a big thing to get the hip block done nurse comes in the first day and can't get the thing to work and so she tries and she tries to find she says well no problem no we'll just use your vein and he goes oh no you won't so you're going to use this thing they put this thing in my chest you're going to use it and she goes chris you seem really really angry maybe we should get the therapist for you and he goes i am angry there's a hip lock in my chest i've had eight bouts of pneumocystis i've had cryptococcus meningitis i'd have parasites i'm not crazy i'd be crazy if i wasn't angry i have a right to be angry so it's true but i also find that and and mary you're a stellar example of this that that it's also important to do what i remember seeing so vividly in schindler's list uh images in the ghetto of people telling jokes of people getting married of people procreating i think it's important in this epidemic to continue to do whatever we have to do as individuals or collectively to a firm life and i think that getting rid of the anger is a terrific way of freeing us up to continue to do life affirming things some of the people i've seen in this epidemic who have died not even hiv positive are people who were self-victimized by losing the focus of there are still things i want to do in life so i really encourage people and myself to find those outlets i remember my friend bruce priebe who was andy rose's lover bruce passed away this year who had a comedy routine and i saw him here at the comedy store which was wonderful in which he essentially came out as a hiv affected man and talked about his life and it was you know i sat there going why is this funny but of course it is funny and that has been the essence of of rebellion of uh you know of making it our own and um i don't know i guess all we'll do is keep on trying well you know one of the miracles of this epidemic in this community you're right that that in many ways we're community that has come together out of death but we're also a community that um is celebrating life you know and that when you talk to many people with aids or many people who are working in this community and gay and lesbian people that because of the presence of death now there is an overwhelming uh appreciation and passion for life you know that i know i feel very very strongly that this life belongs to me now it's the only thing that i have that is absolutely irrevocably mine yeah and that i'm going to have be the close of the show because we're out of time and i couldn't think of a better way to close thank you all very very much for being on the show thank you all for being here go do something about this because frankly even though the name of the show is get used to it in case of hiv aids i really really wish we didn't have to but that's the name of the show and that's been what we've talked about get used to it [Applause] [Music] [Applause] [Music] [Applause] [Music] [Applause] [Music] [Applause] [Music] you