Audio Interview, Bill Valenti, December 16, 2012

  • BILL VALENTI: Now I came out in 1980.
  • EVELYN BAILEY: Were you born in Rochester?
  • BILL VALENTI: I'm a Rochester native.
  • I had moved back here after I finished school.
  • I was married at that time.
  • I'd been married for ten years.
  • And started to deal with that conflict.
  • And one of the first things that I
  • did prior to that was, with a group of college buddies,
  • walked through Dick's 43 Club on Stone Street as a joke,
  • because I was nineteen or twenty we thought it would
  • be amusing to go in there.
  • Now I found it more than just amusing, though.
  • I found it kind of creepy, to watch
  • men dancing with each other.
  • From my recollection of Dick's 43 was that it was a--
  • and I had heard about that.
  • And Stone Street, do you know where
  • the side door of the back of Lincoln Tower is?
  • EVELYN BAILEY: Yeah.
  • BILL VALENTI: And as a high school student,
  • I used to work at the National Clothing Company.
  • And the employee entrance was on Stone Street,
  • which was right next door to Dick's.
  • So I kind of never really venturing too much farther
  • than the back door of the National,
  • but still knowing about it, wondering
  • what went on in there.
  • So at about the age of nineteen, had a walkthrough.
  • And then just sort of closed it in and did my life until 1980.
  • So one of my first recollections in those days
  • was that there were a number of gay bars in town
  • and I thought that I should do some due diligence
  • and that I would go to each of those gay bars
  • and see what it was like.
  • And of course I was totally--
  • EVELYN BAILEY: Closeted.
  • BILL VALENTI: --under cover, yes.
  • EVELYN BAILEY: What bars were there?
  • BILL VALENTI: Well there was June's, which is now, what?
  • I don't know what it is now.
  • On Liberty Pole Way.
  • There was Tara's, the piano bar.
  • That was where old men went.
  • So I didn't have too much interest in that
  • although that was on the tour.
  • The Avenue Pub, and--
  • so by the time I got to Friars, where
  • Tony Green was tending bar, that was the beginning of it.
  • EVELYN BAILEY: Did he call you Mary? (Laughs)
  • BILL VALENTI: No.
  • Eventually he started calling me Doc,
  • but he was very bold and very fresh.
  • And it was just what I needed to sort of--
  • you know, why are you looking at the floor?
  • And so he picked up on what was going on right away.
  • EVELYN BAILEY: Sure.
  • BILL VALENTI: So we had a conversation
  • and well, if I wasn't ready to come out of the closet then,
  • I never would have, because he sort of blew the door off just
  • by being friendly and cordial and welcoming.
  • KEVIN INDOVINO: Now by this time you
  • were working at the University, Strong?
  • BILL VALENTI: Yes.
  • I had been there since '77.
  • I was a resident there.
  • KEVIN INDOVINO: Right.
  • But I mean, how did that play with you psychologically?
  • I mean, you felt fearful for your job
  • if you got caught in one of these places, or--
  • BILL VALENTI: Totally closeted until there,
  • for the longest time.
  • Just another one of docs getting a divorce.
  • Never did anything to reveal anything, because in those days
  • the university was not welcoming.
  • It was most unwelcoming to gay people.
  • EVELYN BAILEY: Can you put a year to that?
  • What year?
  • BILL VALENTI: Well, so my wife and I
  • separated in eighty-ish, 1980.
  • And I would have been on the faculty for three years
  • by then, because I finished my residency in '77.
  • And was doing my thing in infectious diseases.
  • And so that in 1980, when I became
  • aware of needing to make this change
  • and decided that I didn't need to leave town or leave my job,
  • but that I just wouldn't stay under cover.
  • Nobody asked.
  • EVELYN BAILEY: Yes.
  • BILL VALENTI: But there was no openness to (unintelligible).
  • And there wasn't any welcoming, either.
  • KEVIN INDOVINO: Was there still a Gay Liberation Front
  • at the U of R at the time?
  • EVELYN BAILEY: No, not in 1980, no.
  • Where'd you go to high school?
  • BILL VALENTI: Across the street.
  • EVELYN BAILEY: How was that?
  • We were you aware of your--
  • BILL VALENTI: Oh, yes.
  • I was always interested and always curious.
  • Never really did anything.
  • Just kind of went about my business, being a good student.
  • And I was, so I--
  • EVELYN BAILEY: Yeah.
  • And do you recall hearing any rumbles from other kids
  • at that time, about--
  • BILL VALENTI: No, it was, in those days, it was--
  • if you were you were called a faggot.
  • And it was uncomplimentary, which
  • tended to drive people even farther into the closet.
  • I mean I, from a very early age, had a very, a great curiosity
  • about boys and men.
  • But never put the two together enough to do anything about it.
  • And in fact, my first experience not even in Rochester,
  • but I had--
  • used to work for CDC in those days as a consultant,
  • in their infection control program, so
  • was spending a lot of time in Atlanta, three or four
  • times a year.
  • So I had the opportunity to--
  • well, since you've met Tony Green,
  • I mean, the next step was to just do it.
  • EVELYN BAILEY: Yeah.
  • KEVIN INDOVINO: That was my next question.
  • Now that you're kind of emerging yourself
  • into this community, what next?
  • BILL VALENTI: Well the big thing for me was making friends.
  • And I thought that, god, I'll never know any.
  • I'll never meet anybody.
  • So I met this man at--
  • what was the place?
  • Mickey Russo's place, and before that it was, not the Bug Jar,
  • but what was the place?
  • EVELYN BAILEY: No, Rosie's.
  • BILL VALENTI: Rosie's.
  • EVELYN BAILEY: You met a man at Rosie's?
  • BILL VALENTI: Mm-hm.
  • KEVIN INDOVINO: That's where I first met my man.
  • EVELYN BAILEY: (Laughs) OK.
  • Wow.
  • BILL VALENTI: And that was my first boyfriend.
  • So it was very conflicted, of course, since I was still
  • married, though.
  • It started moving with getting that part taken care of.
  • And-- But it was painful, anguishing, (unintelligible).
  • KEVIN INDOVINO: How did you get through the anguish?
  • BILL VALENTI: Well I never thought of killing myself.
  • That was never an option.
  • What I did, though, was I found a therapist who actually turned
  • out to be gay. (Unintelligible - therapist's name)
  • was one of the old guard shrinks from the generation before me,
  • but was an extraordinary guide in terms of pulling it out
  • of me to (unintelligible).
  • So I went into therapy immediately.
  • Didn't really spend time, because, I mean,
  • I knew at that point that this isn't
  • going to go anyplace unless you have somebody to figure this
  • out with you because--
  • I mean, I could go to gay bars.
  • And of course, in those days everybody was at the bar.
  • So there were lots of opportunities
  • for sex and for meeting people.
  • EVELYN BAILEY: Well that was the only social scene available--
  • BILL VALENTI: That was it.
  • EVELYN BAILEY: --really.
  • BILL VALENTI: That was it.
  • So it certainly took advantage of that.
  • The other thing I did was, I moved
  • into an apartment at Vick Morris House, at 963 East Avenue,
  • across from Eastman House.
  • EVELYN BAILEY: Oh, yeah.
  • BILL VALENTI: So that was nice.
  • So I got myself a good location.
  • You know, location is everything.
  • But still I felt terribly isolated,
  • because this guy that I had met at Rosie's really
  • didn't know a lot of people.
  • He had been out for years and years and years,
  • but he was a bit reclusive.
  • A nice guy and all of that, and he kind of helped me along.
  • But you know, there was so many men and so little time.
  • So I just had to get on with it.
  • So that.
  • So the location, the therapist, the--
  • finally, let's see, met Doug Howard.
  • You know Doug Howard?
  • EVELYN BAILEY: No.
  • BILL VALENTI: He was a student in those days.
  • He was a grad student in those days.
  • He was my patient in University Health Service, and he was gay.
  • And I met him one night at Friars.
  • And he invited me to a party at his house.
  • And that was, I had finally arrived because everybody
  • in town was there.
  • And he introduced me to a lot of people
  • and started making some friends, and then it
  • started to get going.
  • But you know, you just need that, some kind of push.
  • EVELYN BAILEY: Introduction.
  • BILL VALENTI: Something to at least, in those days.
  • Now I don't know if it's easier today or not.
  • I have no idea.
  • Certainly people are more open.
  • I mean there's some sort of pivot point
  • that could find them.
  • And such a good group of people.
  • They were all people my age.
  • They were all people who were professional people,
  • good looking, all of that.
  • And it was through that group of people
  • that I met John Washburn.
  • Which was just a short time later.
  • So between Tony Green and John Washburn,
  • there was no turning back.
  • No turning back.
  • EVELYN BAILEY: Was this early '80s?
  • BILL VALENTI: Well, yes because you
  • know, all of this happened in pretty rapid fire.
  • Let's see.
  • Well, wait, because I bought this house,
  • moved in December '83.
  • But it took a year because there was a fire
  • and it had to be renovated of course.
  • So by '82, '83, I had met Washburn--
  • probably '82.
  • And we were still living at Dick Moore's.
  • And we had many liaisons there, John and I.
  • Now at that same time, though, the AIDS problem
  • had started to emerge.
  • So I kind of started--
  • I came out before.
  • Then the AIDS issue hit.
  • And I was still making my entry.
  • And so it got a little bumpy, because it
  • seemed to me right from the get go
  • that this was some kind of sexually
  • transmitted something or other.
  • Very much like hepatitis B.
  • EVELYN BAILEY: Do you recall the very first time
  • you heard about HIV?
  • BILL VALENTI: Yes.
  • June 5th, 1981.
  • The June 5th, 1981 date is significant
  • because that was the date--
  • remember I was in infectious diseases.
  • EVELYN BAILEY: Right.
  • BILL VALENTI: And read the--
  • had this contact within CDC.
  • So their weekly report was published
  • in hard copy in those days.
  • And the morbidity and mortality weekly report
  • of June 5th, 1981, reported these first five cases
  • of pneumocystis pneumonia and this Kaposi's sarcoma
  • and a couple cases from New York, LA and New York.
  • The curious thing about that is, the guy
  • who reported those cases, Mike Gottlieb,
  • was now a young immunologist in LA at UCLA.
  • And he had been my resident at Strong two years before.
  • So I knew him.
  • We all knew him.
  • We knew Gottlieb.
  • So it was a double hit in terms of, this
  • is kind of a curious thing, and these cases were submitted
  • by Mike Gottlieb who'd been a resident,
  • was a medical student and a resident at U of R.
  • So we all knew him and immediately
  • had this connection.
  • So I took that.
  • In those days we had files upon files and files of articles
  • and we kept all that stuff and I didn't know where to put it.
  • So I filed it, I made a new file called "Infectious Diseases,
  • Other" and put it in the file.
  • And of course, the AIDS file is now--
  • EVELYN BAILEY: Yeah.
  • BILL VALENTI: --millions of pieces of information.
  • So it was that day.
  • And I actually remember reading it and reading it twice.
  • I thought I'd take another look because it was curious.
  • And I had been interested in obscure infectious diseases
  • anyway, and it was something.
  • Saw a lot of that stuff in the hospital.
  • But this was different because I had only
  • see one case of pneumocystis before in a kidney transplant
  • patient.
  • And had never seen Kaposi's sarcoma until--
  • the Jesse Vulo story.
  • And when he came in, that was sort of the beginning.
  • That was-- actually the first case
  • was a guy from-- was a Haitian.
  • I mean, this is text book stuff, but all these bizarre--
  • KEVIN INDOVINO: I'm sorry, what was Justin's last name again?
  • BILL VALENTI: Vulo.
  • EVELYN BAILEY: Jesse Vulo.
  • KEVIN INDOVINO: Vulo, right.
  • BILL VALENTI: He owned Friars.
  • EVELYN BAILEY: He owned Friars.
  • KEVIN INDOVINO: Right, right.
  • OK.
  • BILL VALENTI: But the Haitian guy,
  • so we're sitting around the table with my colleagues
  • and somebody said this sounds like these cases
  • that Gottlieb reported.
  • And then it started to get busy.
  • So that was June 1981 when the report came out.
  • But by the end of the year for the beginning of '82, we were
  • seeing--
  • EVELYN BAILEY: More.
  • BILL VALENTI: --people in the hospital
  • coming into the emergency room, room 380D
  • or on the in-patient service.
  • And-- it was picking up.
  • And it was around that time that we reactivated
  • the infectious diseases clinic, because up until that time
  • it was a once a day, half day a week thing.
  • There was maybe two or three patients and that was it.
  • EVELYN BAILEY: Now how did that impact you?
  • Did it send you back into--
  • BILL VALENTI: Hiding?
  • No.
  • Oh, no.
  • Not at all.
  • I immediately wanted to swing into action.
  • Now, you need to talk to Sue Cowell about this middle piece
  • because before I got involved, around, it must have been well,
  • '81, '82, when she was still in the health service,
  • in the University Health Service,
  • she and a guy named Tom Rush--
  • Tom Rush was a fellow in the infectious diseases
  • unit, and a junior guy.
  • And he and Sue collaborated on a survey.
  • I was talking to her about it the other night, but we--
  • you know, it was noisy and didn't have a chance to--
  • EVELYN BAILEY: Yeah.
  • BILL VALENTI: So it was a risk based survey of gay men
  • they were doing in University Health Service.
  • And then they were doing T-cell counts along with it to try--
  • because the T-cell thing, issue had come along fairly early
  • in all of this.
  • And it was looking like that people with this thing
  • had low T-cells.
  • GRID.
  • Gay-related immune deficiency, but that
  • didn't last for everyone.
  • I don't remember when the word AIDS--
  • EVELYN BAILEY: Actually got attached.
  • BILL VALENTI: --was minted.
  • No, I don't.
  • But it must have been around that time, '82, '83.
  • So now, Tom Rush left.
  • So he must have left in--
  • he may have left-- he would have left at the end of June
  • in either '82 or '83.
  • But by then the infectious diseases at the clinic
  • was getting busy.
  • So I had some time and some interest,
  • so I thought I should get to work and I did.
  • And that's how it started.
  • So it was probably the end of '81 where--
  • and then around '82ish things started to get busier and cook.
  • And I had some time.
  • I was doing the infection control
  • program in the hospital, and managed
  • to extract myself from the lab, so I needed
  • to get out of there anyway.
  • And so I parked myself in clinic.
  • EVELYN BAILEY: And were you still
  • on East Avenue at this point?
  • BILL VALENTI: Until December '83.
  • EVELYN BAILEY: And then you bought the house.
  • BILL VALENTI: Yeah.
  • I bought the house before that, remodelled it, and moved in
  • in December of '83.
  • And it was around that time that I--
  • well, no, I had met Howard long before that because John and I
  • had completed our affair.
  • But we remained friends, good friends.
  • In fact, he eventually became a patient.
  • But that's what it was like in those days, too.
  • It was-- the part about being gay and coming out
  • was not much of an issue anymore,
  • except to staying closeted at work.
  • And it didn't work very well.
  • And if they didn't figure it out, that's OK.
  • We were all doing what we needed to do.
  • The patients are your friends.
  • Your friends are your patients.
  • So it's just hard to figure out--
  • EVELYN BAILEY: Where the lines were.
  • BILL VALENTI: There were no lines.
  • You just didn't have sex with your patients.
  • But many of the people that you knew that way became patients.
  • Along with a fair number of public types.
  • It seemed like in the beginning there was this never ending
  • knock on the door.
  • "Got a minute?
  • I didn't expect to see you here."
  • You know, people were telling their stories, sort
  • of confessing, because by 1985 there was an HIV test.
  • And we were testing people.
  • The Red Cross had a blood screen test that they did,
  • and it was anonymous so that we were just--
  • in fact, we tested ourselves early on.
  • And we did it by number, and sent numbers, specimens in.
  • And it would take a couple days to a week,
  • but we'd get results back.
  • So we had screened Washburn.
  • That was before the test was commercially available,
  • because he was in the hospital.
  • So he was one of the first people
  • that I knew who tested positive and by then he
  • was sick, by '85.
  • But along with him, it seemed like there
  • was this, all of a sudden--
  • EVELYN BAILEY: It just exploded.
  • BILL VALENTI: Yeah, because Jackie and I,
  • we were sort of trying to pace our--Jackie (unintelligible)--
  • pace ourselves.
  • You know, she was, for the time she was good.
  • She had this grassroots approach.
  • She was a little bit somber.
  • She had that somber side to her.
  • She took a lot on her shoulders very early.
  • KEVIN INDOVINO: How did she get into all of this?
  • Was she in the health care business?
  • EVELYN BAILEY: No.
  • BILL VALENTI: No.
  • KEVIN INDOVINO: No.
  • BILL VALENTI: The short story is,
  • and the story that I remember--
  • and I think Sue can, we talked about this the other night--
  • is that Sue will tell you the date that they formed AIDS
  • Rochester on their front porch.
  • EVELYN BAILEY: Right.
  • BILL VALENTI: On Harper street, wasn't it?
  • EVELYN BAILEY: Yes.
  • BILL VALENTI: So there was this grassroots organization
  • (unintelligible).
  • Now Sue recalls other people who came through.
  • Jackie was the only one that I knew.
  • EVELYN BAILEY: There were six or seven people
  • who were on that front porch.
  • And there were two or three possibilities
  • in terms of executive director.
  • But the Gay Alliance took on the hotline.
  • We took on the hotline, and that was the first kind of outreach
  • to the community.
  • The first--
  • BILL VALENTI: Yeah.
  • EVELYN BAILEY: --first place people
  • could go or call to get information.
  • And Jackie had been president of the Alliance, and so--
  • BILL VALENTI: Right.
  • KEVIN INDOVINO: OK.
  • BILL VALENTI: Now at the time, we have to bring
  • in the Rochester Area Task Force on AIDS, the R-A-T-F-A, RATFA,
  • because that was--
  • we formed that.
  • Jackie and I were the first co-chairs
  • of that when the health department wanted
  • to initiate this thing.
  • But that before the test came in 1985.
  • So Jackie had been involved at that level.
  • And then the AIDS Rochester thing was formed
  • and she wanted that job.
  • At the time, her day job was working
  • in the adult bookstore on Monroe Avenue
  • across from the current Starbucks.
  • And AIDS Rochester's first office was upstairs.
  • The bookstore was downstairs.
  • The AIDS Rochester office was upstairs,
  • so Jackie never had to leave the building to go--
  • EVELYN BAILEY: To work.
  • BILL VALENTI: To go to work, to go to either one of her jobs,
  • because in the very early days it was a part time thing.
  • And that became full time later on, when they moved to--
  • there was someplace before they were on University Avenue.
  • EVELYN BAILEY: They were at Tara's.
  • The office moved to Tara's.
  • And then it moved around the corner on Liberty Pole Way,
  • or--
  • BILL VALENTI: Right, right.
  • EVELYN BAILEY: --by Barga Printing.
  • BILL VALENTI: Yes, and then to 20 University.
  • EVELYN BAILEY: And then to 20 University.
  • It was on Liberty Pole Way maybe three--
  • two or three years at least.
  • BILL VALENTI: So we were collaborating.
  • We started working together very early.
  • A couple of things happened.
  • One was, we tried to--
  • there's a report in The Empty Closet of a letter
  • that I wrote to Jackie.
  • It must have been in '85, and it was published in the EC.
  • And I found it the other day.
  • I may even have the link.
  • Somebody sent it to me.
  • But we tried to identify local cases, versus somebody
  • who may have had experience elsewhere,
  • in New York, LA, the a big city, the big, high risk
  • places, because the perception at the time
  • was that well, Rochester's just sort
  • of a low risk kind of thing.
  • It's not here, it's not our problem.
  • So it was a crude attempt, but we did it nonetheless.
  • And tried to keep track of people.
  • We made a definition, a standard definition of someone
  • who would be considered a locally acquired case.
  • And it was fairly strict, but in other words,
  • somebody who hadn't travelled in the past year,
  • but had been right here in Rochester.
  • And sure enough, one walked in the door.
  • And we just started talking to people
  • and ask them their sexual history and discussion.
  • He had pneumocystis.
  • He had everything.
  • He had AIDS.
  • And he had lived right here.
  • He had been right here, so.
  • And we had collected a number of those cases by 1985, 1986.
  • And the idea was to try and dispel the myth of,
  • this is not just a New York City problem.
  • This is a Rochester problem and we really
  • need to be looking at this through a different lens.
  • So that was the purpose of that exercise.
  • We also did the task force RATFA together.
  • And then by about '85ish, the ID clinic at Strong
  • was now busy almost every day.
  • I was there almost every day.
  • And we had a staff of people--
  • small, but a nurse and those people, staff.
  • And Jackie would come to clinic and she
  • would sit, we would ask her to talk
  • to people, to do some counseling,
  • because there wasn't anybody else.
  • I mean it was--
  • collect this handful of people and that was her job.
  • So she came to clinic.
  • Now we got busted because we hadn't credentialed her
  • as a hospital staff, and you need
  • to go through a more formal process.
  • So we did that and it worked.
  • And that's when the era of now signing
  • consent forms for patients to talk
  • to her and that kind of thing.
  • So it became a little more structured.
  • But it was still busy.
  • And we were just doing it, waiting for AZT.
  • EVELYN BAILEY: But the community response--
  • BILL VALENTI: Yes, the community response.
  • EVELYN BAILEY: --was almost, in terms of financial response,
  • nothing.
  • BILL VALENTI: Right.
  • EVELYN BAILEY: And so all you had were really
  • volunteers, people who came forward or who were involved,
  • who wanted to help.
  • BILL VALENTI: Right because there
  • was the pre- and post-era.
  • The before era was "not my problem,
  • nothing goes on here, we don't have to worry."
  • The after problem was "oh, OK, it's a different story."
  • I think what changed that was helping people
  • with AIDS, because around 1985 a group of us got together.
  • A lot of the people that I had met at Doug Howard's
  • several years prior, who were part of my social network--
  • although we didn't call them social networks in those days.
  • EVELYN BAILEY: Right.
  • BILL VALENTI: And--
  • EVELYN BAILEY: And Tony Green.
  • BILL VALENTI: Tony, Green, Ron Enders, Dan Meyers,
  • Neil Parasello, Jerry Algozer, Dick Easton, those people,
  • formed this fundraising group called Helping People
  • with AIDS, HPA, and created the Dining for Dollars fundraiser.
  • And that was the turning point, because if you
  • remember the Village Gate, that night
  • at Village Gate in eighty--
  • EVELYN BAILEY: '86.
  • BILL VALENTI: OK, '86, where we weren't
  • sure anybody would show up, the lines were down the block.
  • People-- all of a sudden now, there
  • was a way of mobilizing people in the community
  • to not only get interested but to write checks.
  • And if you knew how that thing snowballed to those parties
  • in midtown on the mall.
  • I mean, they were huge, became very, very important,
  • significant events that brought people together
  • around one cause that started with a couple
  • volunteers and an idea and that little thing at Village Gate.
  • That went for a number of years.
  • EVELYN BAILEY: That went for ten or twelve years.
  • Now the first one at Village Gate,
  • were there parties in people's homes prior to the coming
  • together at Village Gate, or was it just--
  • BILL VALENTI: Yes.
  • It was--
  • EVELYN BAILEY: So it was always--
  • BILL VALENTI: The dinner party idea.
  • EVELYN BAILEY: --set up.
  • BILL VALENTI: Yes.
  • And that's the way it was that night.
  • But that was a pretty remarkable--
  • EVELYN BAILEY: It was extraordinary.
  • BILL VALENTI: I mean, because it surprised everybody
  • in terms of the response.
  • EVELYN BAILEY: Yeah.
  • BILL VALENTI: Because by '86, I mean,
  • it was the issue of, is Rochester a high risk area
  • or not was--
  • EVELYN BAILEY: Mute.
  • BILL VALENTI: --way behind this.
  • Way behind this.
  • KEVIN INDOVINO: By that time we actually
  • had a significant amount of people who have actually
  • died already, right?
  • BILL VALENTI: I don't remember what the head
  • count was at that point.
  • It exists some place, by year, of how many people had died.
  • But yes, we knew people who were sick and had died because--
  • I knew Jesse Vulo had died by that time.
  • It's been a long time.
  • And a lot of other people.
  • And some surprises.
  • EVELYN BAILEY: Right.
  • KEVIN INDOVINO: Yeah, I think the first person I recollect
  • passing away was John.
  • EVELYN BAILEY: Washburn?
  • KEVIN INDOVINO: Yeah, because that made the news.
  • BILL VALENTI: 1989.
  • That was June.
  • KEVIN INDOVINO: But there were several people
  • that died long before that.
  • EVELYN BAILEY: Yes.
  • BILL VALENTI: Yes.
  • EVELYN BAILEY: Because in '87, Claire and I got together.
  • And practically every week, every other week,
  • we were going to funerals, or visiting
  • people in the hospital, or bringing them food,
  • or bringing them other things that they needed because there
  • was no financial aid.
  • There was no support set up by then.
  • BILL VALENTI: Oh, no.
  • I mean, there were the existing activities like the Meals
  • on Wheels and the Visiting Nurse.
  • PEACE.
  • There were no AIDS organizations other
  • than AIDS Rochester that was going.
  • But there really wasn't any kind of government funding
  • of any kind because even when AZT was introduced in '87,
  • we were bootlegging that and stashing it away in the closet
  • to give to somebody else after a patient had died or couldn't
  • take it.
  • But we always asked for the drug back, for the drug,
  • because it was expensive and it was in short supply.
  • And we had access to it and a couple
  • other drugs that we used in combination.
  • But there wasn't any federal funding
  • until Ryan White came along.
  • The Ryan White Act came along, and that
  • was after we opened CHM, so that was in 1990.
  • But up until then we were pretty much on our own.
  • Now there was Medicaid for patients.
  • And you could go almost immediately,
  • if you had a diagnosis of AIDS, go almost immediately on SSI
  • or SSD.
  • So it was almost automatic.
  • And that, it was a pretty quick response but in terms of,
  • there weren't any drugs.
  • And there was no money.
  • EVELYN BAILEY: No.
  • When did you and Steve Scheibel begin the research?
  • BILL VALENTI: Our collaboration?
  • Oh, he was a fellow in infectious diseases.
  • And must have arrived by--
  • I can get the date, but by certainly '85.
  • I can tell you the exact date.
  • I just have to go back and look it up.
  • But where we concocted a collaboration,
  • we were at the infectious diseases
  • annual meeting in Minneapolis.
  • And it was twenty below zero, and we walking back to a hotel
  • after dinner and just started to talk.
  • And in fact, I think it was at point where we came out
  • to each other about the gay part,
  • because I'm not sure we ever really--
  • we never really had a serious conversation until that point.
  • But once we cleared the air on that
  • and declared our interest in HIV,
  • we started to come to clinic and started
  • working on some of the studies that he brought over
  • to Community Health Network in '88, '89.
  • So that was the beginning of that.
  • But he was always interested in patients
  • and innovative treatments, and thought right away
  • from the beginning even when there weren't
  • any, when AZT was the only game in town,
  • that we would need to use combinations of drugs
  • to prevent the virus from becoming resistant.
  • So he knew about that right away.
  • He was just as smart as they come.
  • EVELYN BAILEY: Wow.
  • BILL VALENTI: It's a pretty amazing brain.
  • I always was in awe of his brain, and I still am.
  • I mean, he's just so smart.
  • He just gets it.
  • KEVIN INDOVINO: So when the concept of CHN came about,
  • tell me why?
  • What were you hoping to accomplish?
  • BILL VALENTI: A couple things.
  • One is, we were working from '85 now through '88
  • in the ID clinic at Strong.
  • And part of the problem was that there
  • were very few trials of drugs to tell us what
  • the best way to do this was.
  • And we were seeing--
  • Steve and I, by that point, had been
  • doing the bulk of the work in clinic
  • while the rest of my faculty colleagues
  • were doing things in the lab and those kinds
  • of academic university things, and were isolated
  • from what was going on on the ground, which
  • was people are sick, people are dying,
  • and what are we going to do?
  • I mean, you just can't continue to let people die
  • without even making an effort.
  • So one of the things we did was we,
  • in addition to AZT, which we used early
  • and our colleagues disagreed with that at a number of round
  • table discussions about that.
  • EVELYN BAILEY: I remember.
  • BILL VALENTI: We started to import drugs.
  • One was dextran sulfate from Japan.
  • There were some really good reports in Japan
  • that there was a sort of a binding agent that
  • would sort of bind to HIV that would slow down
  • its replication.
  • And then we also had the drug acyclovir,
  • which was used for herpes virus infections.
  • Or the drug interferon, which was an injectable drug,
  • an immune stimulator.
  • And we would use three of the four agents
  • in many of our patients.
  • And every month, now, there was a package delivered.
  • About five or six of us who worked in the clinic,
  • because you cold only get a month's supply per person,
  • we used the Helping People with AIDS money
  • to buy dextran from Japan, and each one of us
  • wold get a box of dextran sulfate once a month
  • in the mail.
  • And we would combine that with AZT and either interferon
  • or acyclovir.
  • And we treated people with new drugs.
  • Well, the colleagues in infectious diseases
  • thought we were out of our minds.
  • And really there were a number of heated discussions
  • that went on in those days about the wisdom of that.
  • And while we were waiting for data, people were dying.
  • So I was on the in patient service at one point,
  • and had made friends with Carol Withers, who
  • became a head nurse at CHN, who was the nurse in clinic.
  • And we were making rounds on an in patient,
  • and there was this guy in the ICU with pnuemocystis.
  • And gasping for breath.
  • He'd been taken off the respirator,
  • but he was begging us to let him die.
  • He wanted us to--
  • when Carol recounted the story, when
  • I went with her just a couple weeks ago, and she said,
  • "We can't just let this guy.
  • He can't just suffocate like this.
  • And if he goes back on the respirator he's sure to die.
  • So I think we should treat him with steroids."
  • In addition to the pneumocystis treatment that we were using.
  • Because it was some speculation that steroids in large doses
  • might be helpful.
  • But there were no clinical trials or any of that.
  • So, do it.
  • Let's just do it.
  • We have nothing to lose.
  • So we did it.
  • And over the next three days, the guy came along,
  • and his oxygen improved.
  • And he eventually left the hospital
  • and lived for a while longer.
  • But had a decent quality life.
  • So when my colleagues downstairs learned
  • that I was experimenting in doing witchcraft in the ICU
  • with patients.
  • Scheibel and I were caucusing about how to do this.
  • And by today's standards, I mean that's almost standard of care.
  • It's accepted.
  • It's nothing.
  • It certainly wasn't going to harm you.
  • It's just that there wasn't any evidence for it.
  • EVELYN BAILEY: Right.
  • BILL VALENTI: So we realized that this
  • has reached a point where this isn't going to work any longer.
  • That we have some experience.
  • And have an idea of how we might do this in the community.
  • And that would be a community based medical approach
  • to HIV where we cold attempt to bring as much under one roof as
  • possible because people were not in any kind of condition
  • to be going back and forth to many different places
  • for a whole bunch of things.
  • We're trying to consolidate as much of what they needed
  • in one place as possible.
  • And do it.
  • So in fact, this is December 20th, 1988,
  • I walked out the door and was done.
  • I gave my notice six months or so in advance,
  • saying that the original idea was that we
  • would do private practice.
  • But Pearl Rubin from the Daisy Marquis Jones foundation
  • was the executive director of the foundation at the time.
  • When I presented the idea to her she
  • said, "You're really not talking about a private practice.
  • You'll never be able to get any grants or other funding for it.
  • You're talking about a not for profit."
  • That was her advice right on, very, very early.
  • So I left in '88.
  • Steve stayed on at least another six months about
  • because he needed to finish his fellowship.
  • And while he was finishing his fellowship
  • he was also signing up people, patients
  • to come with us when we opened, which
  • was in July of '89, when we opened in that temporary space
  • on South Avenue, on 758 South Avenue.
  • EVELYN BAILEY: Who funded that?
  • Who funded that?
  • BILL VALENTI: Nobody.
  • I did.
  • I did a lot of out of pocket in those days.
  • Plus-- and I didn't do it alone--
  • we had a number of people and foundations
  • who were willing to fund an idea.
  • And you know, in today's world, it doesn't fly.
  • But in AIDS world, in 1989, it was the perfect timing for that
  • because the situation was so urgent that it was just
  • a desperate time and people were willing to take
  • a flyer on something like that.
  • The big push came when we met with a guy named--
  • he was a friend of Jackie's, who was on our task force,
  • from Blue Cross Blue Shield.
  • Was a guy named Tony Amato, who was very active.
  • He was like a VP at Blue, for--
  • A-M-A-T-O, Anthony Amato.
  • And he was the VP for home care.
  • So he had a vested interest in overseeing what was going on.
  • But he set up a meeting for Steve and for me
  • with Howard Berman, who was the CEO of Blue in those days,
  • and some of his honchos to present the idea.
  • And we pitched the idea and they loved it.
  • They saw what we didn't see, which
  • was a way of mobilizing medical resources in a more
  • cost effective way that might eventually keep people out
  • of the hospital-- an ambulatory program for HIV.
  • And we had this amorphous kind of thing.
  • No business experience at all.
  • But what they did was, they plugged us
  • into what's now Lifetime Health, but then
  • was Genesee Valley Group Health, which has these three health
  • centers--
  • the Wilson Center, the Folsom Center, and there's one other.
  • Those like health centers.
  • EVELYN BAILEY: Highland?
  • No.
  • BILL VALENTI: Part of the Blue thing.
  • But there were three of them.
  • So we-- they got us hooked up with their architect.
  • They also helped us with the state application,
  • for an article 28 operating certificate
  • to operate an ambulatory clinic, and a number of other resources
  • to make this thing move quicker.
  • And while our application was pending review at the state
  • health department, we became a satellite of Group Health.
  • And we operated under their license.
  • That was a Berman idea, right on day one.
  • EVELYN BAILEY: That was a great idea.
  • BILL VALENTI: That if you want-- hello.
  • We were open in six months.
  • So that in June, July of '89, we-- it was in temporary space,
  • but we were legitimate in terms of--
  • EVELYN BAILEY: Credentials.
  • BILL VALENTI: --having a little bit of money and an operating
  • certificate, so that we could bill for our services
  • and had the beginnings of this entity
  • where AIDS Rochester had an office, a satellite office
  • there, a case manager on site, the home care programs.
  • EVELYN BAILEY: Right.
  • BILL VALENTI: And a drug program, Restart,
  • the Catholic Family Center's Restart drug program--
  • EVELYN BAILEY: Started there.
  • BILL VALENTI: --was there.
  • They were the early collaborators
  • on a commercial lab, renting space from the landlord.
  • So in December, then, of '81, we opened up
  • downstairs in the former Elk's Club bowling alley.
  • And we were on our way.
  • EVELYN BAILEY: But you know, as well as I know,
  • that place on South Avenue was the lifesaver of hundreds
  • and hundreds of people.
  • They would not have survived, nor would they
  • have had the care, the individual attention.
  • BILL VALENTI: Well that was the idea,
  • too, was this individualized approach to care, because we--
  • when we opened, Steve had signed up about 110 patients.
  • We had four people go to the hospital right away.
  • And yeah, we were on our way.
  • I mean, the idea it was it was a lifeline
  • and you have a choice, in terms of where you get your care.
  • We also knew from the task force projections
  • and from the State Health Department
  • that the number of cases--
  • I don't remember if they said it was either HIV or AIDS,
  • but-- would double in the next ten years.
  • So I mean the idea of competition with the University
  • kind of went away real fast, because that just
  • wasn't an issue anymore.
  • The idea is there's room for both, because their focus was
  • on clinical trials, and our focus was on primary care.
  • EVELYN BAILEY: Care.
  • BILL VALENTI: So that's how it shook out.
  • And once some of the dust settled
  • and the bad blood and all of those bad feelings went away--
  • and that didn't take that long--
  • we settled in and began working together and do at this point.
  • KEVIN INDOVINO: I want to get your perception
  • on the community's reaction as a whole,
  • and how we reacted to the whole AIDS epidemic crisis,
  • because for a big town like Rochester
  • to have HPA, AIDS Watch or CHN, Meals on Wheels,
  • Visiting Nurses, all of that support system.
  • I mean, it's a pretty phenomenal thing.
  • BILL VALENTI: It is.
  • KEVIN INDOVINO: I just want to get your opinions on that.
  • BILL VALENTI: You know what surprised me and was gratifying
  • early on was that for example, the welcome that we received.
  • A couple of things come to mind.
  • For example, the neighbors on South Avenue
  • were initially concerned that we would have IV drug
  • users dropping needles on the corner
  • and it would be a danger to children.
  • So we met with the neighborhood group and presented the idea,
  • and because of the horror of AIDS
  • and the need to do something, they got on board.
  • And we found that in general, there
  • were people who were willing and interested to put
  • a lot of preconceived notions aside and help out in some way.
  • For example, the other one was--
  • oh, hospitals.
  • Because of the turf struggle at Strong, our chief of ID
  • declined to give Steve an appointment at Strong
  • so he couldn't admit patients there.
  • So that would mean that if we admitted
  • our patients to Strong Iwould be doing
  • hospital duty 100% of my time.
  • So we decided-- this is Doctor Ray Dolan who was really
  • very much opposed to the idea.
  • He wanted to see it killed, because he
  • thought it would be competitive with the clinical trials
  • that they were doing.
  • So there was a lot of bad blood and a lot of unhappiness
  • early on.
  • And well, we were always looking over our shoulders.
  • Once we got hooked up with the Blues, it was clear sailing.
  • We just simply waved-- not to his face, but--
  • "we don't need you anymore."
  • So we went to Highland and St. Mary's.
  • And both chiefs of medicine were very happy to have us on board.
  • And we had many patients to both Highland and St. Mary's.
  • for many years, and still do to Highland anyway.
  • So in other words, a lot of people
  • saw the necessity, the need for doing something
  • and made an effort.
  • The HBA thing, I think, is another example
  • of taking this amorphous kind of group of people
  • with no idea of what was going on,
  • being more comfortable with their denial,
  • and getting them mobilized.
  • We had a little bit of the Christian right.
  • EVELYN BAILEY: Matt Colluso?
  • BILL VALENTI: Yeah.
  • Still at it?
  • I wrote about that in my blog.
  • It's buried in there somewhere.
  • I can send you the link on that.
  • Well, that was the XXI night.
  • In those days, I think it was '85 or '86--
  • well, I was still at Strong.
  • We did a monthly broadcast on XXI,
  • a live broadcast every Friday night for an hour, about eight.
  • So one night he was on with me.
  • And we had done interviews together before,
  • but he was really terrible that night.
  • I mean, he was just out of control with the punishment
  • thing.
  • So at the end when it was all over and the credits had rolled
  • and everything was quiet, I decided that I should tell him
  • what I really think of him.
  • So I did.
  • And it got more and more escalated in terms
  • of my shrieking and screaming at him
  • about not doing anything productive to deal
  • with the problem.
  • And at that time, I had patient whose last wish, dying wish,
  • was to take her children to Disney World.
  • And we pitched the story of the morning paper the week
  • before Christmas and had $5,000 in donations
  • and sent this woman and her two kids
  • and the mother to Disney World.
  • And she was dead six months later.
  • So that time, it was at the end of the year,
  • and I said, "If you really are such a good Christian,
  • why don't you give me some money to help send
  • my patient to Disney World?"
  • And he said, "If I give you the money,
  • will you really give it to her?"
  • So at that point--
  • of course I'll give it!
  • He gave me 50 bucks.
  • And I took it and gave it to the fund.
  • But the media was so accepting of, interested in, wanting to,
  • couldn't get enough--
  • couldn't get enough.
  • So the machine at Strong went to work
  • and introduced me to the sound byte, the how to do it,
  • sort of guided me through that because I had no experience
  • and said a lot of stupid things in the beginning that
  • were quotable.
  • But, you know, learn from that.
  • KEVIN INDOVINO: The XXI show, was it radio or television?
  • BILL VALENTI: TV.
  • KEVIN INDOVINO: It was TV?
  • OK.
  • (unintelligible) in our basement.
  • BILL VALENTI: Yeah.
  • Was it Paul somebody?
  • KEVIN INDOVINO: Paul Lewis?
  • BILL VALENTI: Was it?
  • A guy who, we became friendly and he got
  • interested in the problem and concocted this series of things
  • on HIV.
  • So look under Valenti and Matt Colluso on a Friday night,
  • and it must have been '85.
  • KEVIN INDOVINO: I'll do some research.
  • BILL VALENTI: Because it was before we--
  • well, we were still at the Strong clinic
  • because this woman was a Strong patient.
  • KEVIN INDOVINO: Do you remember what the show was called?
  • Nope?
  • Okay.
  • BILL VALENTI: It may be in the boxes at the archive.
  • EVELYN BAILEY: Well, and it will be--
  • BILL VALENTI: We tipped a lot of that stuff--
  • EVELYN BAILEY: It will be in the Empty Closet.
  • BILL VALENTI: Right.
  • EVELYN BAILEY: It will be in the Empty Closet.
  • KEVIN INDOVINO: The few years before I got back
  • (unintelligible).
  • BILL VALENTI: So what we tried to do
  • was to use the media as the way of educating people
  • to try and at least counterbalance the hysteria,
  • because in those days it was one hysterical bizarre headline
  • after another that just made people crazy.
  • So once we got engaged, they allowed
  • me to be the University's point person on HIV issues.
  • So we were doing something every day,
  • either a print thing or something on the radio or a TV
  • thing or three TV things in a day, just getting out there
  • and they couldn't get enough.
  • And we accommodated them and tried to do the same thing.
  • So even though people may have been a little bit
  • slow to mobilize, once they mobilized in a couple
  • of different areas--
  • the RATFA, the HPA, the support for CHM,
  • those kinds of things--
  • it started to cook, and worked.
  • Of course it's different now.
  • KEVIN INDOVINO: Yeah.
  • I kind of wanted to get to that, though maybe we're
  • moving a little too far forward.
  • But I want to, you know, how has it changed?
  • I remember a particular year where
  • our whole attitude toward HIV and AIDS
  • kind of changed because it was no longer the big threat.
  • BILL VALENTI: What year was that for you?
  • KEVIN INDOVINO: I would say like '98.
  • BILL VALENTI: Well, combination drugs,
  • the second term came around in 1992,
  • '93-ish, that we were doing viral load testing and that
  • sort of thing.
  • And so in that era, yes, is when it started to change.
  • The shift from death to chronic illness--
  • certain death to chronic illness, paints that.
  • And the other thing that changed is
  • the demographic in terms of who gets HIV.
  • If you remember one reason the gay community,
  • a disenfranchised group of people mobilized behind HIV
  • is because all of those early cases
  • were in gay men, men who had sex with men.
  • And as minorities, heterosexual--
  • I mean, as HIV became a sexually transmitted disease
  • that it always was and the demographic changed
  • and we kicked into chronic illness mode, that changed.
  • And the other thing that changed as a result of a lot of that
  • is that it wasn't on the front page
  • of the newspaper every day.
  • So the perception I think among a lot of people today
  • is hold on a sec.
  • I can cure it, and I can take a pill, and I can text my friends
  • and my world is the same as it always was.
  • And of course, that's not true.
  • It's different.
  • It's different.
  • So the crisis part is different.
  • And I think the crisis part, in those days,
  • is that everybody was just blindsided
  • by what was going on.
  • Nobody expected any of it.
  • And even just sort of watching that whole thing unfold day
  • after day was, there was always something new, now what?
  • Oh, HIV and AIDS in blood transfusions, AIDS in babies,
  • first case in a woman.
  • The story unfolded but it was sort of--
  • there was more distress with each new piece of information
  • in those days because there was no experience
  • and it was all new.
  • And at the same time we were trying to figure out, well,
  • what do you do in terms of prevention and treatment?
  • And they were both new concepts.
  • You know the prevention story, Sue Collin
  • and I were talking about this the other night
  • about the public health people in many cities who
  • closed bath houses.
  • And Joel Nitzkin, who was the health director
  • here got involved in that early and we got some really bizarre
  • discussions.
  • I can remember Jackie trying to eke out a compromise where
  • we were going to take the doors off the rooms at the bath
  • house.
  • Or the doors had to be open and couldn't be--
  • and she came up with a like a bar door, you know,
  • the cowboy bar door where you can't see the middle
  • but you can see if their legs are on the floor
  • or not, and what's going on.
  • But today you laugh at that.
  • At the Rossman a number of bizarre responses.
  • And those were the people that we
  • tried not to pay any attention to it,
  • or temper it with some evidence and the voice of reason.
  • That this is, that is not a reasonable approach
  • to take all gay men and send them to Hawaii, or wherever,
  • some island, or put them away and take people off the street,
  • or a gay teacher couldn't teach in the school because of AIDS.
  • And AIDS, the connection in some people's minds
  • between gay and AIDS was very strong and still is.
  • EVELYN BAILEY: Yes.
  • BILL VALENTI: But was strong enough in those days
  • to make people think that restriction of some kind
  • was a natural response.
  • So in addition to trying to figure out the best prevention
  • methods and approach to treatment that was evolving,
  • there was this business of being blindsided
  • by yet another recommendation or whatever
  • from some audience, some group, that
  • want to make the world safe by either sending people
  • away, restricting them, firing them, terminating their health
  • insurance and all kinds of crazy stuff,
  • because it was frightening.
  • And the death thing just sent people into a tailspin.
  • The death thing today is different.
  • That's--
  • EVELYN BAILEY: In the early days,
  • the gay community was under attack--
  • BILL VALENTI: Very much.
  • EVELYN BAILEY: --for its participation or its beginning
  • the AIDS crisis.
  • BILL VALENTI: Yes, we started it.
  • EVELYN BAILEY: Starting AIDS.
  • BILL VALENTI: We started it.
  • EVELYN BAILEY: And the other thing
  • is the tremendous fear that everybody,
  • in not knowing where was it going to go?
  • Who would be next?
  • What symptom would then occur, because there was no single--
  • I, mean, Kaposi sarcoma was one outcome.
  • But there were hundreds of outcomes that happened
  • because of that illness.
  • And the community response, the gay community response,
  • I think you would agree was, it brought us together.
  • BILL VALENTI: Mm-hm.
  • Oh, yes.
  • KEVIN INDOVINO: I want to jump a little bit before that, though.
  • When you first started getting out in the community
  • and started talking to the gay community about hey,
  • there's this disease out there, what kind of reaction
  • were you getting from the gay community?
  • BILL VALENTI: Very early on there
  • was a group of gay married men that Don Hall ran.
  • There was the Mattachine society.
  • I even went to one of their meetings to talk to them.
  • They were interested.
  • I mean, in addition to the media interviews
  • we must have done thousands--
  • EVELYN BAILEY: Thousands.
  • BILL VALENTI: --of presentations to anybody
  • who wanted to listen, anybody.
  • And it wasn't just a medical group.
  • It was, they were community groups of all kinds.
  • And getting out there is that-- people wanted information.
  • They were interested.
  • KEVIN INDOVINO: Did you experience any resistance?
  • Like, anybody that was like, nah, I don't even
  • want to hear about it.
  • BILL VALENTI: Well--
  • KEVIN INDOVINO: Or was it in the news enough already when--
  • BILL VALENTI: No, I don't recall being a lot of serious pushback
  • in terms of dealing with the denial.
  • It's there, and I think people participated
  • based on how willing they were to accept this.
  • But the problem was that everywhere you
  • looked there was a cousin, a brother, a somebody, a friend,
  • a lover, who was getting sick.
  • So you couldn't.
  • It was a lot harder to escape then.
  • I mean, you could go into a cocoon of denial
  • and do that sort of thing.
  • But you couldn't stay there very long
  • because it was, once the mid '80s hit, you
  • couldn't escape it.
  • It was the Washburn era.
  • When he finally came out as the gay superintendent
  • of Brighton schools with AIDS--
  • done.
  • And it was--
  • EVELYN BAILEY: The denial decreased tremendously.
  • BILL VALENTI: But even, again, even
  • if you chose the denial path all you had to do
  • was walk out the door because this, relative to New York
  • City, you know, it's a smaller community.
  • There's enough people out there to just look around.
  • And see then Jackie would do the--
  • EVELYN BAILEY: Education.
  • BILL VALENTI: --somebody next to you, all of that.
  • But they had a number of volunteers.
  • Now they mobilized.
  • AIDS Rochester mobilized and had a huge volunteer
  • effort in those days and did weekend retreats.
  • And I would go out on Friday night and do my show with them,
  • when they did them.
  • They did that several times a year.
  • They had a lot of volunteers in those days, buddies.
  • Her buddy program worked very well.
  • And that was, for the era, was innovative.
  • But the other thing is, AIDS Rochester was a huge conduit
  • for patients to us.
  • These people would go there first.
  • EVELYN BAILEY: Yes.
  • BILL VALENTI: And she, and Tony Overmeyer after,
  • would drag a lot of people who didn't know where else to go.
  • So AIDS Rochester really was, in those days, a place
  • where people could go.
  • And it was a safe place to go.
  • And either there or they just walked into our door.
  • A little bit harder to get into the Strong system to find us,
  • but once we opened on South Avenue it was easy--
  • easier.
  • KEVIN INDOVINO: If someone nowadays, down low,
  • whoever, is looking back, what is it, thirty years ago now?
  • That whole thing, '80's era of AIDS,
  • and how we reacted to it--
  • what would you want them to learn from it?
  • BILL VALENTI: Let's see, a couple--
  • the community response piece, the bringing people together.
  • They use that as a model for doing something.
  • And very early on I would tell patients,
  • "Doc, am I going to die?"
  • "Not today."
  • But there's nothing left to do.
  • There's always something you can do.
  • My point is, there's always something
  • you can do as an individual.
  • And if you can't write a check, go--
  • I've said this before.
  • If you can't write a check you can volunteer, help somebody
  • out, cook a meal, do something.
  • But do something.
  • Don't sit on your ass.
  • Just do something.
  • And the other thing you need is, you
  • need people to mobilize people.
  • And there are a lot of people who are magnets like Jackie.
  • EVELYN BAILEY: Yes.
  • BILL VALENTI: And you need some leadership.
  • And then you need to get involved in--
  • and the other thing is, you know there are some things that
  • are important and some things aren't
  • in a time crisis like that.
  • One thing that [INAUDIBLE] very early is gossip.
  • That the AIDS thing just ruined a good piece of gossip for you.
  • It's never been the same for me since then.
  • You know, that kind of stuff just doesn't matter--
  • don't bother me with that.
  • Although, you know, if you've got a really good juicy
  • something--
  • EVELYN BAILEY: Juicy!
  • BILL VALENTI: I'll still listen, but--
  • BILL VALENTI: Passing it on?
  • Forget it, because a lot of people's lives
  • were ruined by stigma and association and innuendo
  • and stuff and it just wasn't worth it.
  • So we learned that.
  • My point was that things are important and some things
  • aren't.
  • And if you're going to spend all your time guessing
  • who has AIDS, or who's sleeping with whom,
  • you're missing the point.
  • We have another idea.
  • You could write a check to help the people with AIDS,
  • and we'll gladly take your money where it will do some good.
  • So we-- the other thing is, as burdensome, and as gruesome,
  • and as difficult, and as horrible
  • as it is, you can't let it get you down.
  • You just can't do that.
  • If you cave in under it, you're done.
  • And see, I come from very stubborn stock.
  • I'm very hard to--
  • my mother--
  • EVELYN BAILEY: Wow.
  • KEVIN INDOVINO: What about your general opinion of where
  • we are as a gay community now.
  • I mean, not just the AIDS thing, but just who we are
  • and where we are.
  • BILL VALENTI: I have no idea.
  • I don't know.
  • The cohesiveness-- well, the other things is as you age,
  • the generations underneath you are--
  • they're not always people I know.
  • I mean, you're some of those people,
  • but your network sort of stays with you as you
  • sort of progress though the (unintelligible).
  • I think a better way to answer the question, though,
  • is what brings people together?
  • Marriage equality, I think.
  • Maybe the AIDS problem helped set the stage
  • for that in terms of visibility.
  • And the other part is, I'm not going
  • to take it any more, your stigma and your stuff.
  • That's done.
  • Not in every circle, of course, I mean.
  • But it's an evolutionary process.
  • But I think that's probably the unifier.
  • A little more positive thing then the HIV thing.
  • But the difference is it's not a crisis proportions
  • In other words, if you don't get married you won't die.
  • EVELYN BAILEY: Right
  • KEVIN INDOVINO: Right.
  • EVELYN BAILEY: Right.
  • BILL VALENTI: If you don't get health care, you will die.
  • So that part is different.
  • I mean, but those are the issues of our time, and that's OK.
  • I imagine that if somebody sits here thirty years from now then
  • it'll be some other something.
  • EVELYN BAILEY: Right.
  • KEVIN INDOVINO: Let's talk very briefly about, then, AIDS
  • Rochester, CHN line, AIDS care.
  • What brought that all about?
  • And what has changed that that was a better option now
  • for today?
  • BILL VALENTI: A couple things.
  • Certainly one is financial, that the grants and funding
  • for purely community organizations
  • have shifted more to the medicalization of HIV.
  • And the focus is on medical care.
  • So with some of the redundancy and overlap in programs
  • that made sense, looking at the funding thing
  • to think about combining them.
  • The other part of the story, which was in the works
  • during this merger, was this whole concept of treatment
  • for HIV equals prevention.
  • In other words, if you treat enough people,
  • it has an individual implication but also has
  • public health implications.
  • If you treat enough people with effective drugs
  • and bring their viral loads down to very low levels,
  • they don't transmit.
  • I think that one of the things people might be talking
  • about years from now would be HIV suppression to the point
  • where you might not need condoms in certain relationships.
  • But that's way tentative, so (unintelligible).
  • KEVIN INDOVINO: You certainly don't
  • want to get that message out right now.
  • BILL VALENTI: No, oh no.
  • EVELYN BAILEY: No.
  • BILL VALENTI: We do everything we can to turn that around.
  • KEVIN INDOVINO: Yeah.
  • BILL VALENTI: That's not a message.
  • That's not for public consumption yet.
  • But the so treatment is prevention
  • and AIDS Rochester has this huge treatment initiative
  • and we have the medical thing.
  • So it makes sense to, for the future of AIDS,
  • if you really believe in no more AIDS, or zero transmission
  • for those messages of World AIDS Day from this year, the way
  • you do it is to do both and to combine-- to merge and join
  • forces, and that's what we did.
  • So we're poised for that next phase of HIV care, which
  • is one reason why when we started
  • was, that we're not ready to pack it in just yet
  • because there's still a little more to do
  • with treatment as prevention, and also the eradication.
  • That has become almost front center in a lot of places
  • the idea of actually getting HIV out of the body.
  • That there's some technology that
  • allows you to measure hidden virus
  • and there are drugs in development.
  • No drugs yet, but drugs in development
  • so that you could see where HIV, at some point,
  • would become like cancer with chemotherapy, where
  • some people benefit from it and others do not,
  • but depending on a number of things that we don't know yet.
  • But that's kind of moving in that direction.
  • So I want to stick around for--
  • EVELYN BAILEY: A few more years.
  • BILL VALENTI: --some of that.
  • But that's the merger story in a nutshell.
  • And the other part of the story is
  • that when everybody's mission driven
  • it seems to work better than people are all over the place,
  • going off in too many different directions.
  • The people who weren't focused are not there any longer.
  • The people who are focused are working,
  • and we can almost see the next generation
  • of leadership going on.
  • Some of the Steven Prices.
  • You know, people who are smart, committed,
  • have been in this for a while and deserve
  • a little bit of attention.
  • So I'm quite happy to step aside at some point
  • and let other capable people do it.
  • EVELYN BAILEY: Now do you remember
  • when did the first federal funds in support of HIV/AIDS
  • come through?
  • BILL VALENTI: 1990, the Ryan White Care Act
  • was a federal initiative.
  • And they funded CHN, and that was about $190,000 grant
  • for the first year, to help subsidize care.
  • And along with that, New York State and other states
  • through a federal initiative, funding through ADAP,
  • AIDS Drug Assistance Program, to make
  • drugs available for people who didn't qualify for Medicaid
  • or for who met income eligibility stuff.
  • But the other thing is, I know I'm not
  • a really big fan of Ronald Reagan.
  • EVELYN BAILEY: Right.
  • BILL VALENTI: But even during the era
  • when he was saying nothing about nothing,
  • and certainly nothing about HIV or AIDS,
  • the federal government was funding research
  • to the tune of about $5 billion a year.
  • So even though it was off his radar screen,
  • the Health and Human Services and the National Institutes
  • of Health, they were supporting the drug studies that we were
  • doing in Strong, those AZT trials that we were doing that
  • got me into so much hot water, because we would bootleg--
  • take the drug--
  • once somebody dropped out of the study we'd get, take the drug
  • and give it to somebody else.
  • Actually, some of the federal funding for the research
  • initiatives went on in the mid '80s, started in the mid '80s.
  • The direct patient benefits came later,
  • the Ryan White Amendment in '90.
  • So we were flying by the seat of our pants for the first ten
  • years there, which is why Helping People with AIDS
  • and all of these foundations made such a difference in terms
  • of subsidizing this.
  • EVELYN BAILEY: And that brought about the rise of ACT UP.
  • BILL VALENTI: Yes.
  • EVELYN BAILEY: ACT UP was a huge--
  • BILL VALENTI: Yes.
  • Silence equals death.
  • EVELYN BAILEY: --huge grassroots effort
  • to confront the government about the lack of money.
  • BILL VALENTI: And what are you doing?
  • Yeah.
  • EVELYN BAILEY: Right.
  • BILL VALENTI: I mean there was a time when,
  • when we first opened people donated some of the furniture
  • and that sort of thing.
  • One thing some doc in town donated was a copier.
  • And on our first day we selected our copayments.
  • $5 was a Blue Choice copayment and $10 for (unintelligible)
  • care copayment, and we framed the money
  • while (unintelligible) the copier.
  • Now the copier was breaking down constantly,
  • but the donor was kind enough to give us a service contract
  • to go with it.
  • So we had a service guy out a lot to fix this copier.
  • And so one day he said, "You probably know what's coming,
  • is that, well the visit's covered by the service plan
  • but it's $15 for the parts."
  • And I had like $3 in my wallet.
  • We had no money.
  • So it took the, now that the copier's working,
  • I took the $15 out of the frame, made a copy of the money,
  • put the copy in the frame and gave him the $15.
  • And I still have the copy, the framed
  • copied money in my office.
  • Yeah, I mean, there were days when--
  • because our first salaries, for the first six months,
  • Steve and I took a salary of $1,000 a month.
  • That was what we could do to subsidize.
  • Something that somebody surprised us one day
  • and said, "Do you think you'll make it?"
  • It was Paula who said that, because it was competitive.
  • The organizations were very competitive.
  • KEVIN INDOVINO: You're competing for the same funds.
  • BILL VALENTI: We are.
  • And on some days it was even unfriendly.
  • And he just said to her, "You know
  • we can't fail because the work's too important."
  • And that was the end of the discussion.
  • And nobody-- but it wasn't just Paula.
  • One of my colleagues, (unintelligible),
  • "You'll never make it."
  • EVELYN BAILEY: Talk a little bit about the other health care
  • providers that you were able to send people to,
  • like dentists and even the eye examinations that were--
  • BILL VALENTI: Yeah, yeah, yeah.
  • Our consultants really rose to the occasion.
  • We had no problem sending someone
  • to the GI specialist, the pulmonary,
  • to the hemo-- anyone.
  • Either at Strong or Highland, never, from day one,
  • there was never a problem.
  • They just did it.
  • We were very honest with people.
  • This is what's going on here.
  • This guy has HIV, he has AIDS.
  • Not a problem.
  • From the receptionists to the doc in terms of seeing people,
  • and doing procedures.
  • We were following the guidelines and doing it.
  • And I never had anybody refuse to see a patient.
  • The other part of the story is, we had some other programs we
  • developed inside when we learned--well we knew--
  • that the CMV retinitis and blindness was a problem.
  • We had this in house vision screening program
  • with an optometrist (unintelligible)
  • Smith was the first person to do the eye watch program inside.
  • And the primary care network donated the money
  • to buy the equipment to fund his cameras
  • and all that stuff that was needed.
  • So we did that.
  • And during that era, when it was such an urgent situation,
  • we could pick up the phone and talk to people,
  • and they were willing to listen and maybe even expedite
  • something to get it moving because of the urgency
  • of the situation.
  • So that would be the other advice
  • that I'd have for people in terms
  • of dealing with a distressful situation is to network
  • and mobilize and get your contacts
  • and keep people invested in this with you,
  • because you can't do it alone.
  • There's just no way you could do this by yourself
  • and you need to mobilize others who are of like mind.
  • And if they aren't, forget about them.
  • Just leave them in the dust.
  • I mean, there was no need to try and really convince somebody
  • that the cause was worthy when there were so
  • many people who were still asking, "What could I do?"
  • It's different now, because you're you stand in line.
  • And there was a bit of a rude awakening there, standing
  • in line because we were so used to going
  • to the front of the line to have our needs met.
  • But there was a turning point in that '90s era, when
  • this chronic disease thing kicked in
  • and people weren't dying in large numbers
  • where the view of HIV became well, that's what it was.
  • And that was what we tried.
  • That's what we were supposed to do was
  • turn it into a chronic illness.
  • And we did.
  • So get in line.
  • And that's OK.
  • That's the way the world is, because there
  • are plenty of other needy and worthy causes.
  • And the other thing is, you should
  • be able to make your own way up to a certain point, which
  • is why we opened a pharmacy to help subsidize
  • twenty years of losses.
  • Yeah, finally.
  • EVELYN BAILEY: The person who comes in to your clinic
  • today, who wants to be tested.
  • Are there, first of all, as many people coming in to be tested
  • and who have HIV?
  • Or do people hold back because they know it's not a killer?
  • I mean--
  • BILL VALENTI: Yeah, I would say the reasons
  • for testing today are different.
  • It was more of a panic mentality in those early days when people
  • wanted to be tested, to know.
  • People get tested for different reasons.
  • We kind of grab them when they came in for STD testing,
  • or they're interested or somehow.
  • But you know, I think there's still a lot of denial
  • out there in terms of the perception
  • that people have about their own risk,
  • and the people are big risk takers.
  • So the pace is different.
  • I would answer that question by saying,
  • I don't think enough people are being tested,
  • because if there are 250,000 people in the United States
  • that do not know they are HIV positive but don't know it.
  • I guess the question is, how many are there
  • in this nine country region?
  • If there are 2,000 people in care,
  • I'll bet there are a lot of people out there.
  • And if they're not positive today,
  • talk to me next week, because of the perception, the risk.
  • Now this generation has grown up with condoms
  • as part of their culture and discussion.