Wednesday, 18 January 2017

Anus Cancer Symptoms

[ music ] >> thank you for joining us. this is the inauguralpresentation for the series "we were there." this series was designed becausepublic health is about people, not just the people we serve butalso the people who have served. this is an opportunity for themto share their experiences, their rich detailedstories and their insights so that we may be inspiredto carry on their work.

and at this time i'd liketo invite dr. anne schuchat to the podium for a few words. >> thanks so much phoebe. welcome everybody. it's just awesome to lookout here and see the crowd. it's really, i think we'rejust all very excited about this series andabout launching it today. i am really excitedto get to welcome you to the first installment ofthe "we were there" series.

and if you're like me theextraordinary richness of cdc's historyis one of the reasons that you came to work at cdc. i've always beenenergized by the idea that what we do makes adifference for people and that that is part of ourincredible history and also part of our future. there's some momentsin cdc's history that are just a bit larger

in the public's awarenessthan others. of course, you know todaywe say the zika response and recently the ebola responseare among those moments. but the "we were there" seriesis meant to bring back some of these exception periods andgive today's workforce a chance to hear directly fromthose who came before. so how can you begina series like this at an institution like cdc. as you can imagine choosingamong the seminal moments

in cdc's past isvirtually impossible. we did have somewrite-ins about our choice. so there was notunanimity in this. but there's two reasonsi can admit to why we wantedto begin with aids. on paper i can say thatwe're launching the series on essentially the35th anniversary of the first morbidity andmortality weekly report about what laterbecame known as aids.

but in reality you canthink of this as similar to taking the moderator'sprerogative to ask the first question. the series is organized by ouroffice of the associate director of science and our very ownassociate director for science, harold jaffe was a centralcharacter in the early days of aids not just the movie,but the real life version. so many at cdc and elsewherewere part of that story, i believe so many of you as well

and that story's continuationoccurs today. you know before we get into theformal program i think it can be tempting to consider thisearly period with nostalgia. but the early days of aids inamerica were pretty horrible. i was doing my residencytraining in new york city in the mid 1980's when abouta third of the patients on the wards was literallydying from aids. in those days the firstdiagnosis was often the beginning of the end andi met so many young men

who had been feelingfine a few weeks before and suddenly couldn'tbreathe without support or developed splotchesacross their bodies that sometimes spreadto internal organs or had a bad headacheor change in vision as their first indication thatsomething was terribly wrong. in the clinic as we administeredthe temporizing supporting treatments for an array of opportunistic infectionsthe bactrim and amphotericin

that were pretty much all wehad to offer at that time. our patients startedto break the news of their shocking diagnosesto their loved ones. like we saw recently withebola there was fear, stigma, discrimination andmassive confusion. in the first years of aidsthe cdc was making sense of this mysterious newdisease, churning out data and recommendations in the daysbefore the internet using shoe leather epidemiology andmeeting the communities

where they lived. we are so lucky today to getto hear directly from some of our agent's heroeswho were there. thank you. [ applause ] >> thank you dr. schuchatand without further ado i'd like to introduce dr. haroldjaffe and dr. jim curran. >> well thank you phoebe for that kind introduction. it's really a great honorto be the kick off session

for this new "wewere there" series and it's a particular pleasureto be able to be participating with jim curran, martha rogers, and walt dowdle all of whom played really importantroles in the early epidemic which they'll talkabout in a bit. i know many of you were not bornwhen these events took place or certainly weren't readingthe newspapers at the time. but it's important i thinkand anne eluded to this to understand what a trulyterrible disease this was

particularly beingthe pretreatment era. i think this story alsoillustrates the power of epidemiology and how wecan understand a new disease and even prevent itbefore we know the cause. and finally, in keeping with thetheme for this lecture series, we were actually there. cdc played a critical role inunderstanding and responding to the early aids epidemic. today's presentation is going toinclude both a lecture and clips

from the film, "andthe band played on." this film was released byhome box office in 1993 and it's based on a book of thesame name published in 1987. the author randyshilts is shown here. randy shilts was an openlygay newspaper reporter for the "san francisco chronicle" andvery sadly died of the disease. the film uses actors,i think some of whom you'll recognizeplaying the parts of people who were actually involved.

so here are some of those maincharacters in the film clips. of course, many morepeople including a number of cdc staff wereinvolved in the early work. and you'll notice if you knowany of these people in real life that their roles were abit distorted presumably for a dramatic purpose. my character is therefor comic relief, which is [laughter]probably appropriate. the film starts with a scene

from the medicalintensive care unit at ucla hospital inthe fall of 1980. this means a lot to me becausei actually trained in medicine at ucla and left just six yearsbefore these events were being depicted. so let me show youthe first clip. >> (tv) thank you. >> we'll be back. >> (tv)you know.

>> doctor? >> no, not now. >> (tv) here we are. this is-- (tv) [ crowd cheering ] >> what is his t cell count? >> i've got totell you dr. gottlieb... this is weird man. >> what?

>> he doesn't have any. >> how can he nothave any t cells? >> his immune system's gone. >> (tv) ed, it's way pasthis bed time. >> good morning. >> good morning, doctor guinan. >> jim. >> yeah. >> can i talk toyou for a minute?

i just got this in the mailfrom our man in la, dr. shandera who got it from a dr. gottlieb. i think you ought tolook at it right now. jim, looks like there's avery weird epidemic breaking out among gay menin los angeles. there have been fivecases of pneumocystis with no contributing diseasewithin the past few months and already two fatalities. >> hot stuff

um huh, plus i made somephone calls to new york and san francisco and it seemsthat they've had similar cases. i think this ought to go into the weekly newsletteras soon as possible. what did you do that for? >> i don't decide what goes in the newsletter, ican only recommend, but mary, we've got anew administration. do you want to seethis published

so the people can read it ordo you want to see it killed? >> thanks. >> almost exactly 35years ago on june 5, 1981 you actually havecopies of it with you. but it didn't even makethe cover of the mmwr. as was mentioned in the filmthe article described five young previously healthyhomosexual men who had all developed biopsyproven pneumocystis pneumonia at three hospitalsin los angeles.

two of these menhad already died. these cases seemed to be veryunusual in several respects. first of all, we think ofpneumocystis as a disease that occurs in animmunosuppressed person, somebody who say hasgotten cancer chemotherapy or an organ transplant. but these individuals didn'thave any of these risk factors and yet they developedthis unusual infection. secondly why were theyall homosexual men?

and thirdly why were they beingseen in los angeles and possibly in new york and san francisco? so i want to ask jim since hewas there what he was thinking when we got these reports? >> cdc was alerted to this because of a recentlydeceased clerk named sandy ford who retired from cdc andsandy had noticed requests for pentamidine isethionatecoming from people who had no reason to havepneumocystis pneumonia

and alerted her supervisors inthe parasitic disease division. so the investigation began atcdc from a very attentive clerk who called attention to it. i think when we saw thisharold and i and others were working withthe hepatitis folks in hepatitis b vaccine trialsin gay men and we were very, very attuned to the epidemiologyof hepatitis b in that community and in the ongoing explosionof stds in the late 70's. so we went into this witha very strong thought

that this was something that wassexually transmitted and also that that would make, meet at ahill upward climb to get people to pay attention to it. well the following monththe mystery that started in june became evenmore mysterious. so let me show youthe next clip. >> okay what we've got inlos angeles, san francisco and new york is a number ofgay men who have been hit with a variety ofopportunistic infections

and really that's all we know. i've asked don to join us because for the last three yearshe's been tracking hepatitis b virus in gay men andbefore that worked on the ebola feverepidemic in africa. thanks for joining us. what we've got to do is hitthe phones and spread out. contact the health departments in all the majormetropolitan areas as usual

so they can do a hospital tohospital search for cases. >> basic shoe leatherepidemiology. >> that's it. you got to talk to thepatients, talk to the doctors who may have treated thosepatients and friends, relatives. there is no question toostupid or too personal. >> sexual relationships too. >> lifestyle stuff. >> household chemical cleaning,

>> diet... >> it could be a badbatch of street drugs. >> pets... >> yeah, maybe they all gotthe same kind of kitty litter. [ laughter ] don, i'm going to go tonew york this afternoon and take a look at this disease. can you come with me? >> sure.

>> if i knew these blotcheswould turn purple, i'd have bought somebags to match. here, look at my book. when i was stillhuman i was the best in the business, ask anybody. leave to me to get somedisease nobody ever heard of, kaposi's sarcoma. even my doctor hadto look it up. nothing to worry about he said,usually happens to italian men

in their 60's who continueto live a normal life until they die ofsomething else. do i look like anitalian man in my 60's? now i do, 160. why do they make things likethis that nobody can ever solve? >> this is now justa month later. this is early july1981 and we've heard about additional gay menwith opportunistic infections but also with thismalignancy mentioned

in the film, kaposi's sarcoma. and up until thistime kaposi's sarcoma or ks was a rare diseasein the united states. it had been described in 1872by a dermatologist moritz kaposi and the disease that hedescribed was a disease that occurred primarily inelderly men, particularly those of ashkenazi jewish orsouthern european ancestry and it was a rare disease. cancer registry data from themid 1970's indicated there were

only 300 or 400 cases reportedeach year in the united states. and this is an example of theclassical form of the disease, typically occurs in thelower extremities usually of elderly men. i think i saw one case inmedical school looked exactly like this, kind of a plaquelike lesion and this form of the disease progressedvery slowly. so typically individuals mightbe treated with radiation or sometimes not treated at alland the dogma at the time was

that an elderly man wouldmuch more likely die with kaposi's sarcoma ratherthan from kaposi's sarcoma. now this is what we wereseeing in these young gay men. histologically if you did abiopsy it's indistinguishable from what i just showedyou on the older man. but clinically itwas much different. it was much more aggressiveso you might see a patient in clinic one week and hewould have two or three of these lesions, a few weekslater might have a half a dozen

and a few weeks latermight look like this slide. and the disease wasn'tjust limited to skin. here is an example of apatient who has an oral lesion. these same lesions could occurelsewhere in the gi tract in the stomach and the lungand they are very vascular. they could bleed so patientsactually were dying of this, which was really unheard of. the most interesting thing thatwe discovered in reading more about this was that thereare a number of case reports

where when this diseasedeveloped in the immunosuppressedindividual, particularly in renal transplant recipientssometimes when it was possible to reduce the levelof immunosuppression or even stop it, thedisease would regress. so there seemed to be somerelationship between the level of immune function and theoccurrence of kaposi's sarcoma. but at the time we had noidea what it was about. now up until this time,this was early in the summer

of 1981 we were just relyingon physicians calling us and saying you knowi saw one of those. i saw a young gay manand he had this and that and we dutifully recorded it. but it became pretty obviousthat that wasn't going to be a real surveillance systemor a way to track the epidemic. and as you all know thefirst thing that you have to have is a casedefinition so we made one up. our eis officer harryhaverkos came up with this

and said what we're interested in is biopsy proven kaposi'ssarcoma or one of the list of about a dozen lifethreatening opportunistic infections, things likecerebral toxoplasmosis or cryptococcal meningitis. they had to be a previouslyhealthy person under age 60 because we weren'tinterested in ks of the elderly and obviously weexcluded individuals who had some known causeof immunodeficiency.

you'll notice that at the timethe disease didn't have the name aids. it didn't have any nameactually so we called it ksoi or kaposi's sarcoma andopportunistic infection. we were then able toask field dis officers to contact infectious diseasespecialists, oncologists, dermatologists and majorteaching hospitals to report if they saw anyone meeting thiscase definition to their state and local health departmentsand then to us at cdc.

so this is a copy ofour phone report form. it had patients names onit, but you'll be reassured that they were ultimatelydeleted. and using this casereport form it was possible to draw an epidemic curve. this curve was actually drivenby my wife, mary chamberland, when she was an eisofficer working for david sencer in new york. this is obviously fromthe pre-powerpoint era.

it shows the casetotals nationally with the crosshatchareas from new york city. so jim is there anythingyou want to say about the case definition and establishing asurveillance system? >> i think one of the mostimportant decisions we made was to have a very specificcase definition. we knew that it was insensitive because there were many lessdramatic cases occurring

in gay men. we didn't want todefine the disease by who it was first reported in. and pneumocystis pneumonia at this time could only bediagnosed by open lung biopsy. so by the time somebodywould get one of those they were really sick. and the specificity of thecase definition allowed us to track very carefullythe epidemiologic patterns

which ultimatelyhelped to define a means for prevention beforethe cause was discovered. well, let's move on now to a bitlater in the summer of 1981. >> do you have manygay friends harold? >> not too many, no. two doctors i knewin medical school, i stay in touch with them. >> are they a couple? >> yeah, actually 15 years.

>> kiko and i, kiko's my loverbut we've got a wide circle of friends and most ofthem are in relationships, or want to be in a relationship. >> so what are you saying? >> lots of men go to thesebathhouses, but there are tens of thousands of gay men in thiscity, maybe a couple of 100,000. they're just cops and waitersand teachers and lawyers and ditch diggers and athletes. >> bill, you got totalk a little louder,

they can't hear youdown the block. >> i'm sorry i don'tmean to lecture. i just don't want you tocome away from your tour of the bathhouses thinkingthat's how all gay men live. >> last night welost another one. less than three weeks thishandsome young guy turns into the elephant man. plus we found out it was caused by some rare parasite that only sheep get.

so i called a vet to ask whatthey'd do when she'd get it. they shoot them. >> good luck. thanks. >> selma. >> 'bye bill. >> hi selma dritz,department of public health. we're here to inspectthe premises. >> i'll see if ican find the boss.

>> those two guysthere, strangers? >> maybe, probably. >> they just met and nowthey're going to go in the... >> right. >> it's interesting... >> listen to me... imagine yourself in a place likethis, only it's filled with women, i mean really beautiful women. i mean imagine one ofthose penthouse women.

she's wants to go intothat little room with you and there's nothing betweenyou but a little towel. are you going to tellme that you wouldn't go into that little room,seriously consider... dropping that little towel? >> possibly, yeah. >> yeah. i know men whowould give up food for it. >> hi eddie how are you? >> good.

>> eddie papasano,dr. harold jaffe, from thecenters for disease control. >> hi. >> so what's the problem? >> well there may be somekind of epidemic spreading in the gay community and i'd like to just come in,have a look around. >> i'm sorry, that's impossible. we have to protect theconfidentiality of our clients.

>> i know, but eddie, youknow that i speak on behalf of the gay liberation committee, the city council,the state assembly. i can tell you without fear of contradiction youare regarded second only to abe lincoln as a citizenwho would fight to the death to preserve civil liberties. so let's cut the crap. it's 10 o'clock in themorning for god sake.

let us in. >> selma, only for you. >> thank you. >> you're a real mensch, eddie. >> so how many mencome here at night? >> hundreds. every night of the week, some bath housesmore than 1000. >> what's this?

>> poppers they'rea quick cheap high. >> you probably recognized someof the actors in that clip, lily tomlin and philcollins and sir ian mckellen. the actor who played me is aperson named charles martin smith who is best known foreating mice in "never cry wolf" and playing terry the toadin "american graffiti." so, obviously somebodyknew a lot about me before they cast this. [laughter] the scene is shownin a bathhouse in san francisco

but it's actually based on avisit that bill darrow, one of our researchsociologists and i made to the club bathshere in atlanta. and we were particularlyinterested in learning more about poppers, nitriteinhalants. so we showed up wearing our governmentblue blazers. we were the onlyones wearing clothes, so we were fairlyobvious and we sat

at a little card tableand said, "excuse me. can i talk to you?" and the men were actuallyincredibly cooperative. they were happy to talkabout what they were doing and particularlyabout these inhalants. these inhalants actually couldbe bought in the bathhouse in these bottles with nameson them like locker room, which was very appropriate because these thingssmell like sweat socks.

but they could also be bought in these more mysteriouslooking brown bottles in gay book stores and bars. and they were beingused to enhance gay sex. so we thought, well"what's in this stuff? is it possible that it'sa contaminant that's causing immunodeficiency?" so we bought some. i don't know how we put it onour government credit cards.

[laughter] we broughtthem back to cdc. the environmental healthlaboratories analyzed them and just found what wethought they had in them which was butyl,isobutyl and amyl nitrite and no obvious contaminant. they were also used toexpose laboratory animals, i think rats, in aninhalation chamber to see if they were immunosuppressiveand they were not. so we thought wellwe can't say for sure

that these don't play a role,but at least it's not obvious. so jim what did you make ofthe environmental hypothesis? did you think there wasanything to it or do you think from the beginning thatit was an infection? >> well you know i explainedour bias to begin with, because it looked so much likea sexually transmitted pathogen. but we didn't want to lose anyopportunity to just end it. i mean what if we'redue to something that was an environmentalcontaminant

that could simply be eliminatedfrom the environment and the epidemic would end. at cdc, we were used to the endsof epidemics, you know beginning with the curve that comes downand that's what we all, we all hope for. we had a lot of help fromniosh and other people. we actually did inhalant studiesof the immune systems of mice and a variety ofdifferent things that were singularlyunconvincing.

in terms of how we boughtthings we lived in an era where we pleaded ignoranceand asked forgiveness more than we got permission. let's move on to nowearly autumn in 1981. >> alright what do we think, what do we know,what can we prove? >> zip. >> only gays. >> think, but can't prove.

>> only males. >> semen depositors. if it's in the semen. unless there's somethingspecifically unusual about this disease itshouldn't make a difference where the semen isdeposited whether in the anus or in the vaginawhich could mean that women will begetting it also. >> that's a good place.

focus on that. >> all we know so far is that the immune system stopsfunctioning completely. >> in all cases. >> no, but can't prove. >> you know what wehave here looks more like a sexually transmitteddisease than syphilis does. >> think or prove? >> well i can't prove that the sun isn't going to turn

into a bran muffin next tuesday. after 20 years of doingthis i know what i know. don't say i know it's puresupposition but it's more than strong enough tojustify a definitive study. >> i agree with bill. it's a single infectiousagent with a high probability of sexual transmission. >> well then viral or bacterial? >> well if you skip "think and prove" i'd say viral

but it's only a guess. >> guess, definitely. >> okay, let'sassume that it is a virus. now the question is, is itone that we already know that has become lethal or isit some kind of brand new virus that we've nevereven seen before? here's a little stat on chew on. >> in seven months thenumber of cases jump from five to 152 in 15 states.

>> seven months. >> yeah, but the spooky part is that so far the mortalityrate has been 40%. >> forty percent. >> according to thedoctors taking care of these patients the mortalityrate could ultimately turn out to be 100%. >> hundred percent. >> my god.

>> alright, let's set upa case control study based on the premise that it'ssexually transmitted. >> so we did set upthat case control study. it was pretty obvioushow to get the cases. we would go to the citieswith the largest number of reported cases of either gaymen with pneumocystis pneumonia and or kaposi's sarcoma oran opportunistic infection. we would interview themin person but it wasn't so obvious how wewould get controls.

we went around in a circleabout do we want men and women, just men, just straight menand gay men or only gay men? we finally decided justto limit the control group to apparently healthy gay men. but the next question was howwould you find suitable matched controls, matched to the caseswithin about five years of age by race and city of residence? one idea we had was let'sask the cases for the names of their male friends whoare not their sex partners

and actually less thanhalf of them could do that. so that was probably a clue. we were able to makecontact with a number of physician providers,mainly gay men who had predominantlygay male practices, and saidcould you help us recruit from your practices,which they did. and finally we went topublic std clinics in this, in these cities that servedlarge numbers of gay men.

now there's an obvious biasthat is if you're being seen in an std clinic you'reprobably pretty sexually active. we knew that but we figured,well we'll just have to take that into account whenwe look at this study. this was the face sheet that weused for our case control study in early autumn of 1981. [ crowd cheering ] >> stick around here.i might be coming right back. [ street sounds ]

>> dr. mary guinan please. >> your name. >> i'm a friend of dr. conant. >> your name? >> you can tell him. he has no idea who you are and we'll pretend wenever heard of you. >> you guys ahead of me. >> you can go ahead.

we got nothing to do except go to a halloween party,during rehearsal, i know... it's "tres gauche" to fawn, but i happen to think you're a genius, double genius as adirector and choreographer. >> so you? bobbi campbell self-appointedks poster boy. you look surprised. >> no, no i'm not. curious maybe?

>> well you know if the gaycommunity doesn't start raising hell do you think reagan'sgoing to do a damn thing? >> i wish i had your courage. >> courage? no. i'm scared to death. i just have this absurddetermination to live. don't you? >> it's open. >> dr. guinan

>> yes. >> i tell you, i expected the neighborhood, the hotel, this room even, but i think it wouldtake fellini to cast such a beautiful youngwoman in a sweat suit as a doctor i'm supposed to reveal my most intimatesexual eccentricities to. >> hello. >> i'm mary guinanand the reason

for the sweat suit issomebody stole every piece of clothing i brought with me from the laundromatthis morning. would you mind signingthese two consent forms? one is for the questionnaireand one is for the specimensi need to collect. >> what specimens? >> blood, urine, a swab fromthe inside of your mouth and another from your rectum.

in this study some havethe disease and some like you have no symptoms. >> you know i really don't mindif you know all this about me. i'm just not toosure i want to know. do you have a nameyet for this disease? >> the gay press calls itgay pneumonia or gay cancer and the straight pressdoesn't mention it at all. >> i know i was hung upin traffic coming over here. gay, gay halloweenparade was on.

have you seen it? >> i didn't know they had one. >> yeah yeah, they do. it's really pretty amazing. the party's over. >> i want to know whyrichard gere didn't play me? [laughter] but it's something i've come to live with.

we didn't interviewrichard gere but the rest of the scene is prettyrealistic. we did interview men inhotel rooms in the cities where we were working. our think out per diemwas about $25 a night, so we were not stayingat the four seasons. but and the desk clerks werepuzzled why all these young men were coming asking totalk to the cdc doctors. you can imagine howuncomfortable this would have

been for everybodyinvolved but actually within a few minutes we foundthat the men we were talking to were extremely open. i think the main reasonfor this was fear. patients who had thedisease knew they had it. they knew that they weren'tgoing to do very well. even the controls often knewother men who had the disease and there was a genuine desireto try to help us figure out what was going on.

now jim you did a lot ofinterviewing in new york. and i wonder whatyour impression was of the men that you talked to. >> i think the contexti'd like to start with is how deep the closet was for the gay communityin those days. not only was therenot gay marriage but being a federal employee and being openly gay wasnot the greatest thing.

and we had an employeewho helped us who was a public healthadvisor in new york city who was openly gay whilehe was in new york city, but not after hemoved to atlanta. and he unfortunately himselfdied of aids, about 10 years ago after the good drugswere available because he kept it secret. so this is still aproblem in the world and it was areal problem in '81.

the gay community andthe health departments in new york city wereextremely helpful and i think that we had all sorts ofcooperation from a community that was aware of this. and the gay press also were veryhelpful and also informative and the mainstream press andtv simply stayed away from aids for at least a year and a half. thanks! the next few slides comefrom the case control study. first of all you can see thatwe were able to interview 50 men

in person in new york city,san francisco, los angeles and a couple from atlanta. about three quartersof them were white which fit the demographicprofile of the early epidemic. and here are some of thevariables, again looking at 50 cases and 78clinic controls. these are public stdclinics and 42 patients from private medical practices. you can see that the casepatients were more likely

to have gonorrhea and syphilisthan either control group. they were more likely to usedifferent kinds of street drugs and the use of the poppers, the nitrite inhalants wasessentially universal. in looking in more detail at sexual activity we sawsome really big differences. so for example, the mediannumber of sex partners per year for the cases was morethan twice as many for either control group.

and again, one of thosecontrol groups is coming from public std clinics. the median proportionof partners from bathhouses was much higher. and the age at initiating gaysex was a little bit younger in the cases than controls. when we finally managedto publish this study, i think we were fairlycautious in our conclusions. we said that we thought theoccurrence of these diseases

in the gay men that we werestudying was associated with certain aspectsof their lifestyle. and we went on to say thatthe biggest differences seemed to relate to sexual activitybut because drug use was so intertwined with sexualactivity, men having a lot of sex were usinga lot of drugs. we couldn't say for surethat we we were dealing with a sexually transmitteddisease, although i thinkthat's what we thought.

i thought you'd be interested in seeing how this study wascovered by the mainstream media by looking at a broadcastfrom "nbc nightly news." it's interesting also you'llsee the real bobbi campbell, the real jim curran 35 yearsago who looks surprisingly like the current jim curran andi think they're the same person. and you'll get a clue about thenext part of the investigation. >> scientists at the nationalcenters for disease control in atlanta today released theresults of a study which shows

that the lifestyle of some malehomosexuals has triggered an epidemic of a rareform of cancer. robert bazell now in atlanta. >> bobbi campbell of sanfrancisco and billy walker of new york both suffer from a mysterious newlydiscovered disease which affects mostlyhomosexual men. but has also been found inheterosexual men and women. the condition severelyweakens the body's ability

to fight disease. many victims get a rare form ofcancer called kaposi's sarcoma. others get an infection knownas pneumocystis pneumonia. researchers know of 413 people who have contracted thecondition in the past year. one third have died andnone have been cured. >> death didn't scare me. it was living withthis for a long time. that's more frighteningthan death.

>> investigators haveexamined the habits of homosexuals for clues. >> i was in the fast lane atone time in terms of the way that i lived my lifeand now i'm not. >> the best guess is that someinfectious agent is causing it. today researchers hereat the national centers for disease control saidthey have found several cases where people who had been sexpartners both had the condition. the scientists say thisprobably means they are dealing

with some new deadlysexually transmitted disease. the investigators see this as aserious public health problem. >> from an epidemic point ofview there have been more deaths from kaposi's sarcoma andpneumocystis pneumonia than have occurredwith all the cases of toxic shock syndromeand the philadelphia outbreak of legionnaire'sdisease combined. >> researchers are nowstudying blood and other samples from the victims trying to learnwhat is causing the disease.

so far they have had no luck. robert bazell, nbcnews, atlanta. >> jim, other than your youthfulappearance do you have any comments about that clip? >> well one of the things that helped us was the handsomebob bazell had gone to college at berkley with harold jaffe and had an inside trackto get this on tv. it was a real battle to get anypublic attention to aids both

from the reagan administrationand, but particularlyalso from the press. it's interesting jimalso that you brought up legionnaire's disease whichwould be the next topic for the "we were there" series. so as mentioned in the newscastwe'd heard from our eis officer in los angeles, daveauerbach that based on conversations he'd had withthe gay community that some of the early cases had beensex partners to each other.

and he wanted to interview themto find out if that was correct but had never done thiskind of work before. so we were able tosend out bill darrow, our research sociologist who'dformerly been an std investigatorto help him out. and the answer to the question about sexual contactsbeing cases came just within a few days later. >> jim, i got a call from la.

>> wait a minute,i'm on the phone. >> i got a call from la. this could be thefirst real lead to prove this thing issexually transmitted. my plane leaves in 40 minutes. >> hold on. we don't have the budget yet. >> don't sweat it. i'll front the money.

you'll pay me back. >> okay. if you think you havedefinitive proof it was brought in by a ufo pleasesend it into us. >> you don't knowa man from new york with a french-canadianaccent do you? very handsome i was told,very chic... >> no. nah, i don't think so. i mean i very seldom.wait a minute, uh...

this might help somebodyelse, right? >> of course i know him, from the bathhouses. i never had sex with him but almost everybody i know has...or wants to... >> fun. >> then again, hegave me hepatitis so it's quite possiblehe gave me this too. from the moment ifirst spied him at the tubs i wasso crazy about him. he was so gorgeous.

>> can you just give me hisphone number or address or any, any way i can get ahold of him. >> all i know ishe's french canadian. he's an airline stewardbased in new york. i don't even know which airline. >> oh that's okay. if you can just giveme his name. >> we called himduggie, nickname. >> duggie.

>> and his full name? >> hi mary. >> hi. you back in town? >> just for the night. i'm probably nuts but i'mon my way to new york to try and find a very sexually activefrench canadian airline steward. gaƤ—tan dugas? bill darrow. >> nice to meet you. >> sit down.

take all the time you need. >> thanks very muchfor coming in. >> well i'm veryflattered to be asked, although i have no ideawhat i'm here to discuss. would it disturb you if i smoke? >> if you need to go ahead. mr. dugas do you have sexwith any of these people? >> is that what i'm here for, totalk about my beautiful lovers? and now i am flattered, although

if you don't mind my sayingi cannot possibly imagine why you'd be interested. >> we've been findingsubstantial evidence to suggest that one of the ways thisdisease may be transmitted is sexually. >> now wait a minute. look all i have is skin cancer which is not contagiousand you know it. >> no one's accusingyou of anything.

we just need to knowas much as we can. >> you know i adore doctors buti must say if it is an epidemic, this gay plaque thingit's your fault for not stopping it, not mine. >> that's exactly whatwe're trying to do and we need everybody's help. so if you could give methe names and addresses of all your lovers andstart with the people on this list, please.

>> my friend we're talkingabout thousands of men all over the world whose facesi cannot even remember and you want names? >> well as many as youcan remember would help. >> my book's in my apartment. call me huh? >> what's the number? >> i'll call you. >> listen help me,don't help me.

that's up to you. but don't fuck with me. i'm not playing games here. >> not before sixand not after 6:30. >> and remember something,whatever it is if i got it someonegave it to me. >> right, this ishow it breaks down. this is patient zero anairline steward from new york and the starting pointof this particular group.

now these are the 8 with whomhe had direct sexual contact these four in newyork, these four in la. this is la three. he had sex with la two. this man from floridawho in turn had sex with this floridaman, two from georgia, one from texas and so on. in all 40 cases in 10cities are verifiably linked to patient zero which stronglysuggests this is a sexually

transmitted disease. >> that's great. that's absolutelyterrific work bill. great. >> bill that is the firstsign of real proof, good job. >> the interviewthat bill darrow gave about this investigation he saidthese three men they never met. they never had sex yet theynamed the same three guys in, the same guy in new york city.

i actually dropped my pen. david auerbach's mouthwas just hanging open. he practically felloff of his chair. so these are the slides thatbill showed us when he came back from his trip to california. so here's the outof california ks case, who is mr. dugas, linking together two clusters of cases in southern california, and here he's linking together cases in los angelesto cases in new york city

and then finally the slide that you saw in the presentation of a cluster linkingtogether 40 men in 10 different northamerican cities. now because he wasreferred to as patient zero in a publication the u.s. mediawent berserk and they said, "patient zero, hemust be the guy who brought the epidemicto the americas." and we never intended to suggestthat and we had no evidence that that in fact was true.

in fact we've done recentphylogenetic studies indicating that there are virusesthat were collected in the late 1970'solder than mr. dugas'. but there were certainlymen like him, other relatively affluent,highly mobile men who have sex with men who easily could havespread a sexually transmitted infection throughout thesexually active gay population of the united states. it's interesting to notethat besides mr. dugas

two of the other members of thiscluster were flight attendants. now at the time of the investigationwe thought the graph, the figure that we showedyou literally indicated who infected who. it wasn't until much later thatwe learned the incubation period for the disease was muchlonger, probably 10 years. so at least some of the men in this cluster had probablybeen infected some years before.

but still it's importantto see the sexual network and how these men couldhave infected each other. very unlikely to have beenthe result of chance alone. so jim when you saw billdarrow's presentation in the cluster diagram thathe showed, were you convinced that we were dealingwith an std? >> i think you knowthat those of us at cdc were absolutely convincedbut the power of denial is so great in the absenceof an agent

that it still made peoplethink it couldn't happen. when dr. auerbach and dr. darrowpublished their paper in the "american journal of medicine"they calculated the likelihood of this occurring by chance tobe one times 10 to the minus 12 if five percent of menin the country were gay. the other thing is it isvery curious how we're able to link these cases together with that long incubationperiod. and perhaps it wasrelated to the fact

maybe the earliest casesclustered around those with the shortestincubation periods. that's speculative butthat certainly happened with the dentist'scase later on. now for reasons unknown tome, cdc medical officers did and many including mestill do keep their notes in green laboratory notebooks. maybe it's because they are wannabe laboratoryscientists, i don't know.

i did that and here is acopy of a page in my notebook that was dated november 1982. i covered the patient's namebut i've summarized here a call that i received fromdr. arthur ammann who is well knownpediatric immunologist at uc san francisco. who was asked to consulton a child who was born in march 1981. that baby had rh disease,a hemolytic anemia

and required multipleexchange transfusions to treat that condition. following his discharge inthe hospital he was unwell. he developed otheropportunistic infections. he required more blood and itwasn't clear what was going on. now art ammann literallyhad written the book about pediatric immunodeficiencyand he said, "you know this doesn't look likeanything i've ever seen before. but it looks like it'saids except everybody knows

that aids doesn'toccur in children." the transfused bloodall came from one place, irwin memorial bloodcenter in san francisco. this last clip which isn'tvery factually accurate but i think is importantshows you the investigation of that child and what ensued. [ child crying ] >> harold jaffe cdc. >> how do you do?

>> harold jaffe. >> betsy reisz >> so it's true huh? he was born here 20months ago, an rh baby. within a week his entireblood volume had been replaced six times. now he has zoster,practically zero t cell count, and more opportunistic diseasethan we know what to do with. >> and he had 13 donors?

>> um huh, all fromirwin memorial. that's all i could find out. they keep a lid on the place sotight it's like the pentagon. so forget about getting alist of donors from them. >> the first irrefutablecase caused by transfusions and these peopleare stonewalling us. >> well? >> you know what we need, somebody to just scarethe hell out of them.

>> only atilla the hun could. >> selma dritz. >> well i got it, butthere's one problem. well two problems. i'm freezing that's one problem. let's get some coffee. one of the donors died fromthe disease two months ago. we can't prove it. >> i really can't prove it.

i would not prove it. >> he was one of the richestmost socially prominent families in town. he swore to his dying breathhe wasn't gay. >> what's the differencewhat he said, i mean when somebody dies from thisyou can't exactly mistake it for whooping cough. >> according to his doctorhe died from encephalitis. it's on his death certificate.

>> alright, let'stalk to the doctor. >> and get to say what, he lied? >> well somewhere in this townthere's got to be somebody that, a gay man he had sex withor what about his family? did they know? >> my brother wasn't gay and i can assure you no matterhow hard you search you're not going to find oneshred of evidence to suggest the contrary.

he was on the board ofseveral corporations. he was the chairman of thefund raising committee for st. patrick's. he was meticulous! he was meticulous in concealinghis other life, even from me. >> excuse me i wouldlike to remind everyone, i'd like to remind everyonethat these are not regulations. these are not regulationsfrom the cdc. this is a workshop whereevery agency connected

to the blood industrycan evaluate information that the cdc has found. together we are hopingto be able to arrive at some course of action. now one option is to establishguidelines to keep people who are high risk fromdonating blood to begin with. >> banning homosexuals from giving blood won'tprotect the blood supply. what it will do isstigmatize them.

it reminds me of bloodbanksrejecting donations from blacks for fearof syphilis. >> have you any idea of thecivil rights implications of establishing such guidelines? >> civil rights my ass. my son's a hemophiliac and if homosexuals are infectingthe blood supply why not keep them from becoming donors? >> what do you mean,the entire gay community? then what?

separate drinking fountainsone for gays, one for humans. >> don't start that gayrights crap with me. there are 20,000hemophiliacs in this country and grid has becomesthe second leading cause of death amongst them. we have rights too and one ofthem is the right to stay alive. >> i know that we'redealing with a very complex and highly emotional issue but it would help alot if we're all--

>> how do you expectus to be unemotional when at least one person isdying everyday from a disease that doesn't even have a name? now if the cdc can't botherto come up with a name at least it should stop themedia from calling it grid. we have enough peoplehating gays without having the entire stigmaof this disease placed on us, especially sinceit has been shown that this disease is nolonger merely gay related.

now i make a motion to officially call this diseaseacquired immune deficiency syndrome or aids. >> questions or discussionson this issue please. >> i second it. >> alright. all in favorof dr. voeller's motion? and opposed? >> the motion is carried. >> dr. bove?

>> the fda advisory panel to the bloodbanks feels thatthe evidence for nearly all of this is inferential. the cdc's evidence of bloodtransmission cannot be warranted until the cdc shows definitively that an infectious agentcauses this disease. nothing about it even exists in the peer reviewed medicalliterature, not one case. evidence of such bloodtransmission is lacking.

may i point out thatthe blood industry is under the jurisdiction ofthe fda and the fda according to dr. bove doesnot acknowledge that there is an epidemic,because there is no evidence that it's a blood borne disease. >> suppose for examplea small amount of blood by some unlikelychance is contaminated. with no test to findout which blood is safe and which isn't whatdo you suggest we do?

destroy the entire bloodsupply in america because some of it may or maynot be contaminated? >> no, no. well in fact testingis the second option that we should discuss. now we at the cdc have found, we found that the hepatitisb test is 88% effective in identifying patientswith this disease. >> is the cdc seriouslysuggesting

that the blood industry spend100 million dollars a year to use a test forthe wrong disease, because we've had a handfulof transfusion fatalities and eight dead hemophiliacs? how many dead hemophiliacsdo you need? how many people have to dieto make it cost efficient for you people to dosomething about it? a 100? a 1000? give us a numberso we won't annoy you again until the amount ofmoney you begin spending

on lawsuits makes itmore profitable for you to save people thanto kill them. >> the disease called aids, acquired immune deficiencysyndrome sounds less than deadly, morelike a diet pill. medical researchersare warning the risk of contracting the disease aids. >> henry pina who has aids gotinto a minor traffic accident. so police called thehazardous materials team.

>> the impact on bloodbankscould be disastrous. >> this clip isn'tvery accurate. grid which refers to gay related immune deficiencywas a term we never used at cdc and aids wasn't namedat this meeting. also art ammann was morphed into a woman playedby angelica houston. jim you didn't look very happyat the end of the meeting. i'm wondering whatyou were thinking?

>> i don't look toohappy in the movie. but i would say that thegeneral consternation and the general problems wehad getting the bloodbankers to cooperate with us was real. so i mean they deservedthe criticism that they get in this movie. and the termaids was suggested. we suggested thatdr. armstrong suggest to a public health servicecommittee that was subsequent

to this meeting that it becalled aids because we wanted a term ourselves to do this andwe frankly did want something that was memorableand i guess it is. the one thing i would want tosay that's really wrong was that there was notresistance from the gay community at these bloodbanking meetings. we worked with the gay communityleaders that were invited to meetings very strongly andadvised them not to do that and that really is one fictionthat came up in this movie

that really i think makesthe gay community look bad. they were very strongly infavor of initially working to eliminate this epidemic. i guess the questionis why the bloodbankers and national hemophiliacfoundation were so negative about what we were presenting and i think the causewas denial. is jeff copeland here? i didn't see him.

but jeff copeland chairedthis meeting and went on to become a cdc director andat the meeting he was quoted by randy shilts as saying,"to bury our heads in the sand and say let's wait for morecases" is not an adequate public health response. i think the bloodbankers andthe hemophiliac treatment providers simply didn't wantto face reality that what they were doing,which they believed to be lifesaving was alsoputting lives at risk.

fortunately privatediscussions that took place over the next few months weremore productive and on march 4, 1983 the u.s. public healthservice published the first recommendations forpreventing the disease that now actuallywas known as aids. so they said first of all peopleat increased risk are those who have signs and symptoms,the sex partners of people with aids, sexuallyactive gay and bisexual men with multiple partners, haitianentrance to the united states.

now this was a verycontroversial point. what we knew was the diseasewas occurring in haiti and it was occurring inhaitians living in this country, particularly in south floridaand around new york city, but we didn't know why. we actually did a casecontrol study to try to figure out the risk factors andwe came up with nothing. so we said at leastfor the time being that haitians should notbe allowed to donate blood.

now this undoubtedlycaused a lot of unwarranted discriminationin the haitian community. but i think as a public healthdecision probably was the right one at the time. we also knew about casesin iv drug abusers. we didn't want them todonate blood either. and then the recommendationswere essentially to avoid having sex withsomeone known or suspected to have the disease, that havingmultiple partners increased

the risk. and here it says that as atemporary measure persons at increased risk should refrainfrom donating blood and plasma. now as time went on and wehad good screening tests for donated blood, graduallythese restrictions were eased with one exception andthat is of gay men. it wasn't until earlyi guess late last year that the fda changed theirexclusion recommendations and said gay men can donateblood unless they've had a male

partner within thelast 12 months. but delays in implementingblood screening and restrictions of donors were verycostly, there were a number of lawsuits brought againstthe bloodbanking industry and hemophilia manufacturers. in other countries suchas france the officials who were judged responsible for these decisionsserved jail terms. but on a more positive note,

if you can have a more positivenote i think it's remarkable that these guidelineswere essentially correct and they were all donewithout knowing the cause. it wasn't until a few monthslater that luc montagnier and his colleagues in parisreported detecting a novel retrovirus in the lymphnode of a homosexual man for which they receivedthe 2008 nobel prize. it was another year beforerobert gallo and his associates at the nci really showed thisvirus was the cause of aids.

so i think these earlyinvestigations done by cdc and others really are examplesof the power of epidemiology and relatively simple studies to understand a new disease evenmake sensible recommendations without knowing the cause. now i wish i could tell youthat the story ended in 1983 but you know it didn't. so let me quicklybring you up to date. so these dot maps show youhow the disease progressed

across the united states. each dot is three personsreported with aids. the first 10,000 casesin may of 1985 mainly in new york and california. this is the situationin july of 1989. a 100,000 cases lots of cases inplaces like puerto rico, dallas, chicago, seattle, atlanta, and then finally thefirst half million cases. really at this point, whichis now 1995 really every major

metropolitan area in theunited states had large numbers of cases. and then to bring you up to datethese are the cumulative cases in the united statesas reported by cdc. so through 1984 there were about1.2 million americans reported with aids of whom morethan half had died. and each year we believe that about 40,000 personsare diagnosed with hiv. none of us, certainly not mepredicted that this was part

of a global epidemic that wasspreading without our knowledge and that by 2004 about 40million americans had already, 40 million people around theworld had already died of aids and another almost 40 millionwere infected with hiv. now these numbers ithink are important, but they obviously don'tgive you the whole story. they don't give youthe human face that anne was talkingabout earlier on. so i want to show youthe last clip of the film

that i think does thatportraying both individuals who had aids and advocatesfor those individuals. i know who most of themare, but not all of them. i'll tell you theones i do know. >> [singing] yesterdayyou came to lift me up. as light as straw andbrittle as a bird. today i weigh less thana shadow on the wall. just one more whisperof a voice unheard. tomorrow leave the windows open.

as fear grows pleasehold me in your arms. won't you help me if youcan to shake this anger? i need your gentlehands to keep me calm. cause i never thought i'd lose. >> (tina) chow, rudolph nureyev >> [singing] i onlythought i'd win. >> [singing] i never dreamed... >> arthur ashe. >> [singing]i'd feel thisfire beneath my skin.

i can't believe you love me. >> liberace. >> [singing] i neverthought you'd come. >> freddie mercury. >> [singing] i guess i misjudgedlove between a father-- >> princess diana wasan advocate particularly for children with aids. >> [singing] and his son. >> as was elizabeth taylor.

>> [singing] thingswe never said-- >> elizabeth glaser. >> [singing] come together. the hidden truth-- >> magic johnson. >> [singing] no longerhaunting me. tonight-- >> larry kramer. >> [singing] we touched on thethings that were never spoken.

that kind of understandingsets me free. >> halston. >> [singing] cause inever thought i'd lose. >> perry ellis. >> peter allen. >> [singing] i never dreamed i'dfeel this fire beneath my skin. i can't believe ... >> keith haring >> [singing] you love me.

i never thought you'd come. >> denholm elliott. >> [singing] i guessi misjudged love. >> brad davis, amanda blake. >> [singing] betweena father and his son. >> robert reed. >> [singing] things wenever said come together. the hidden truth nolonger haunting me. tonight we touched on things...

>> ryan white again. >> [singing] ...that werenever spoken. that kind ofunderstanding sets me free. i only thought i'd win. i never dreamed i'd feelthis fire beneath my skin. >> dr. tom waddell >> [singing] i guessi misjudged love between a father and his son. [applause]

>> i'd like to askwalt dowdle and martha rogers to join us up here for some brief comments and then a couple questions. martha, i wonder if you couldtell us what you were doing those first few years in theaids program and then kind of what, how the epidemic struckyou during those early years? >> i came to be an eisofficer in 1981 in july just after that first mmwr came out. and i think one of the reasonsthat i even decided to come

to cdc and go into eiswas this whole notion of discovering new pathogens,new things that caused diseases. and to be a part ofsomething like that to me would be very meaningful. i was i think, haroldand jim can correct me, but the only pediatrictrained or one of the few pediatrictrained people involved. so naturally when the childrenstarting getting hiv i had to step up and workon that piece.

and that pretty muchdefined my whole career at cdc is working with mother/childtransmission and defining all of that and proving that itcould be transmitted from mother to child, how often, etc. sothat was part of my major role. >> and walt dowdle? >> thank you very much harold. and once again, i enjoyedthis presentation very much. but as to what i did in the, during the aids epidemic i mustsay that i probably had the most

difficult job at cdcduring that time. and because i had to keepup with all of these people and some, not only thepeople at this table but also many outin the audience. and it was a very mixed emotionsduring this whole people, during this whole time. it was just not possible. even though this film andwith harold's retelling and jim's retelling to actuallyrecapture the whole period

of particularly theearly days of hiv. and i think one thing that wehave to keep reminding ourselves as employees of cdc andpast employees of cdc that public health is politics. there is no question about it. we have to keep that in mindthat public health is politics. that's as it should be. it's politics because, becausewe it's our responsibility in public health to actuallydetermine the problems

and to propose theoptions and force solutions. and then it's up to the public. it's up to the legislature. it's up to congress. it's up to the administrationthen to decide how much you'rewilling to pay and how, what options would youtake up and support. so it really is anissue of politics. so you look back and say okay,

what could we havedone different? is there any way that we couldhave simplified the issue. is there any way we couldhave moved things faster? is there any way we couldhave actually assisted the administration inasking for funds? we could go on andask these questions. and they were an issue everyday. there was lack of funding. the administrationrefused to fund

and how could we have preventedthat and how could we have come up with better solutions? fortunately we had avery sympathetic congress at the time, but thatwas very slow in coming. but these were genuine,actually genuine thoughts that people had,different points of view. and it wasn't always going tobe resolved just by the telling. and so we had, we have tothink back what could we do differently?

what could have beendifferently? and there are many. i'm sure that harold,jim and martha could come up with other instances,other examples of what we could havedone a little differently, maybe smoothed thingsout a little more and actually been a littlemore acceptable politically. but i think the realimportant thing that we have to remember is that, thatthis will all change.

situations will all change. ebola will be differentfrom zika and so on. so it's not going tobe the same thing. situations will always differ. but one thing will notdiffer and it was very clear in the whole hiv aids yearsis that cdc has to be seen and must be seenas an organization that can be depended on. it must be seen as a scientificaccurate organization and it has

to be seen that it'san organization that can be trusted. when you're in thenational arena or the international arena then that one fact iswhat establishes cdc and overcomes many ofthe political issues that might be involved. so it's a really majorresponsibility of all of you out there and i think all of usin public health to make certain

that that image, thatreputation is maintained. and it's really a majorresponsibility to have. think of cdc as a brand name. cdc's brand namehas to be trusted and cdc's brand name isan extraordinary asset. and one thing i learned fromthe whole aids epidemic is how valuable that asset isto anything that we do and anything we'lldo in the future. so thank you very much.

>> we have time some questions. >> good afternoon. my name is julie fishman. i'm in the division ofglobal health protection and just wanted tothank you very much for this very movingpresentation. and i just wanted to say ithink many of us had a path into public healththrough hiv aids. i was 13 in 1981, butwhen i was 19 in college

in new york city i gotinvolved in act up and started going to act upmeetings and even have my shirt from those days to show for it. i never protested in frontof cdc but i did protest in the big demonstrationin front of fda. and later in my careerfound myself going into a meeting there. and it's like i'vebeen here before. oh my goodness, i wasprotesting out here.

and so my question, and nowi'm here working in cdc. >> i thought i recognized you. >> yeah. i neverprotested at cdc. so my question but it'sbeen very meaningful and i can trace my entirepublic health career back to those days. my question to you isabout the role of activists. umm, i try even now when i seepeople protesting outside of cdc and i don't always agree withthem to have compassion for them

because i know that there'sa very heart-felt belief that they have, but i wanted toknow from your perspective being on the inside therole of outsiders and activists howthey influenced you, how it might have been insome cases catapulting, but also even how itchallenged you? >> thank you for youractivism and your career. i would broaden it to start withpeople living with hiv and aids. so i think that more thanany other condition up to

that time the people living with hiv played anextremely active role not only in protesting but actuallyin learning about the disease and advising nih andworking with community. and the people living with aidsreally represented an important part of the solution to theepidemic and continue to do so. activists also werecourageous and extremely helpful in calling attention to thingsand it wasn't always easy for us in government to deal with them

because you know the whitehouse was not involved for five or six years. and the only people that couldreally be approached would be people at cdc or nih or fda. i don't know that all thedecisions that were made because of activists were right, but i know that theycertainly made a lot of our decisionsmore transparent and they really called ourattention to the problems

that they faced as well asthe attention of the public. so i think that theywere extremely beneficial and remain so. and i think the public healthcommunity has learned a lot from aids activists and peopleliving with hiv and how we want to include people indealing with this. from my previouscareer in stds i can say that really wasn't true untilthe aids epidemic came along in terms of how peoplewere dealt

with with syphilisand gonorrhea. they were seen as others to be diagnosed and treated to prevent transmission to yet otherothers rather than as partners. so i think that i'd liketo thank the gay community, thank other people living withaids and the tremendous courage of alot of these people. like magic johnson andarthur ashe and many of the people you saw onthe screen because it is about people and wehave to always remember

that that is whywe're doing this. >> well you probablyare, or martha go ahead. >> i think you can'treally mention activists without also thinking aboutpeople like elizabeth glaser who you saw also in the movie. and her daughter died ofaids and she went on then to not just be an activist buta doer in forming the foundation which is now responsiblefor a lot of the decrease in the number of pediatriccases throughout the world.

so, i would agree with jim, activism was extremelyimportant to all of this. >> walt you probably had someinteractions in washington with the activist community. can you tell us about that? >> well you know ithink i would agree with what's been saidregarding the activism, what a very importantrole that they played. but we also have to considerthat there are many people,

particularly in theaids epidemic that actually had verystrongly held beliefs that were just the opposite ofwhat the activists were trying to actuallytrying to achieve. and i think we haveto somehow recognize that how they hold thesebeliefs and the fact that these beliefs areso different from ours, nevertheless it's somethingthey sincerely hold. and even the when we really talkabout the reagan administration

and what awful treatment ofthe gays and so on so forth that you hear, neverthelessthis is what they felt. i had the opportunity tobe in washington to set up an aids office and assistantsecretary of health's office. and one of my jobs wasto go over to the office of the science and technologypolicy every few weeks and give a report to themabout the status of aids. i never actuallycommunicated with them, never actually communicated.

because we were talkinga different language and they had one view. we had a totally different view. i mean 180 degreeview and as far as they were concernedthis was a lifestyle issue. it was a moral issue. it was not a government issueand all that the risk groups had to do was stop doingwhat they were doing and it would all be over.

i mean that was the view. so the real question isactivism is extremely important but how do we communicate? how do we actually break thosebarriers and overcome the issues that separate us so much. i sometimes feel like that wedon't spend enough time thinking about how do we bridgethese gaps and these gulfs that are so important? and we could have donea little better i think

in the earlier job. but there were a lot offactors that were influening us. >> can we take onemore question? >> hi paula braun. i'm entrepreneur in residence with the national center for health statistics anddr. curran i also teach at the rollins schoolof public health. my question for you is if you have the technologythat's available today

when this epidemic took holdback in the early 80's what if anything wouldyou do differently? >> technology. well you know there'sobviously a lot of issues with social media anda lot of other things. i think that we have a lotdifferent view of homosexuality and politics nowadays. so there would havebeen a lot more internal and open communicationabout things.

i think that you know that one of the seminal events isthe discovery of the virus. and so when i think of technology thefirst thing i think of is could we havediscovered the virus sooner? and of course, we didn't knowabout the disease until '81 and the virus wasdiscovered in '83. and then could wehave developed, you know i think we did,cdc did a very good job

with john ward and a lotof our laboratory people in standardizing the use ofthe blood test first of all for bloodbanks which weregoing to using it initially in demonstrating the criticalepidemiologic characteristics and diagnostic careexclusively with that test. and we got the testout pretty fast. so the diagnosis of hiv happening fairlyquickly after that. undoubtedly it would havebeen several months sooner

with today's moleculartechnologies and things like this. i would say maybe social media and then just thegeneral culture we live in would be the main difference. but others may want to add. >> i want to commentas a virologist, i would agree with that. i, life would have been indeeda lot simpler had we come

up with the virusearlier here at cdc. and in fact, i wouldpredict that had we come up with a virus here at cdc that there probably wouldhave been no nobel prize for discovering the virusbecause, i don't mean that cynically at all. i'm just saying that'swhat cdc is supposed to do. it doesn't necessarilydeserve a nobel prize, it's what we're supposed to do.

i keep saying we. i've forgotten i don'twork here any longer. but, but i always think ofit that's a public service that we're to actuallyidentify the problem and propose the options andthat would be part of it. >> i think unfortunatelywe're out of time. can we take one quick question? >> yes, a two part question. why '81, why 1981?

is it because we were moreaware of it or was it, was it something else? and the other one isso apparently state of georgia still hasa lot of the hiv cases and i couldn't readthe report in detail but i came across that. what is that we'restill missing? why is that we're stillnot able to protect the "at-risk" community so well?

>> so the second parti suggest you speak with dr. merman who'sin the front row. so the first part, i meanthe question in '81 was, was this actually a newdisease or had it been going on for a long time andwe were just missing it? and we looked very hardfor cases in earlier years. we found a few in thelate 1970's but very few. so it's one of thevery rare instances where we were actuallydealing with a new disease

and we can discuss that withyou individually if you want. before we break and beforeyou all have to leave i want to acknowledge the contributionmade by others at cdc. i mean we're four of you, but we're not all ofyou by a longshot. so first of all couldthe people who worked on the early epidemic maybestand up and be recognized. and then the persons whoare working on it now, could you please stand up.

alright, well i think we'llbring this session to an end. i hope you enjoyed it andcome back on august 31st to learn the real storyabout legionnaire's disease. >> thank you very much. before you leave couldyou take a moment please to thank our speakers? and also i'd like todirect you to walk down the steps behind the--and look at the glass case. the library has puttogether a showcase of the,

some of the originalartifacts from 1981 and also yes we'll haveanother one of these in august. please join us then forlegionnaire's disease. and we'd also like tothank the cdc foundation for their support.

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