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.