(gentle music) - I am Norm Silverstein.

Thanks for joining us.

We're in good company today with Dr. Bill Valenti, a man who has devoted his career and life's work to ending the AIDS epidemic.

As co-founder of Trillium Health, formerly known as The Community Health Network, Dr. Valenti has been a pioneer in the fight against HIV and AIDS helping to advance treatment and save countless lives.

Dr. Valenti has recently published a memoir titled "AIDS: A Matter of Urgency", describing his experiences as a medical maverick facing the front lines of the epidemic.

Born and raised here in Rochester, Dr. Valenti has dedicated his life to improving public health and increasing access to healthcare for individuals in need, particularly, those from the LGBTQ and low-income communities.

As Dr. Valenti continues his effort to end the HIV epidemic in New York State by 2020, we're pleased to have him join us to reflect on his work as a physician, advocate, and community trailblazer.

Bill, thanks so much for joining us.

- Hi.

- Bill, your interest in medicine and infectious diseases goes back to being seven years old in Rochester.

Share that story with us.

- A second grader.

See, I grew up in the polio era.

So, the polio epidemic was going on around us.

And in grade school my mother enrolled us, my sister and me, in the Salk Polio Vaccine trial.

And at the time, that was the largest field trial of a vaccine that had ever been conducted, and it was done in grade school kids.

And polio was around us.

We weren't allowed in swimming pools during the summer.

I mean, it really restricted our activities and the way people thought about how kids behaved in warm weather, because warm weather was the polio season.

But in any event, at the end of the trial, my sister and I were told, my mother told us that we had received the real vaccine and not the placebo.

And it was after the vaccine then went into widespread use in grade school kids that polio disappeared, and I watched that.

So, my first public health and exposure to vaccines took place at Number 14 school, which is now the World of Inquiry School on University Avenue, and I just continued to follow that path.

But my thinking about public health and vaccines was formed at a fairly early age.

- Yeah, I don't think too many of us could go back to the second grade and say, we actually had some ideas about what we might do as adults.

But you also had someone in the family, a great uncle, a doctor who became a mentor to you.

- Right.

Dr. James Chiappetta was my great uncle, my mother's uncle.

And he was a big influence and a great role model for us.

And he and his wife never had children of their own, but so their nieces and nephews and great nieces and nephews were really their children.

So, we spent a lot of time with him.

And I can remember driving with him in the car when he would go on house calls.

I would wait in the car and I would wonder, well, what is it that he's doing there that is helping somebody who's sick?

So, I had that kind of exposure and I also spent some time working in his office.

Behind the scenes I would open the mail.

- [Norm] How old were you when you were doing this?

- I was about eight years old.

So, I was just off my success from the polio vaccine trial.

And as an 8-year-old was opening the mail in the back room of his office.

And I remember reading the Journal of the American Medical Association, which would come in the mail to him, the JAMA, which is still printed today.

And look at it and wonder, well, what kind of mysteries did that hold for me?

What was in that journal that I might want to know about or learn about for the future?

So, I had that exposure and a culture of health and healthcare as a part of my growing up.

And he and my parents just encouraged me every step of the way.

- Yeah, I was struck by all the connections you have with Rochester.

Your father worked at the public market and you worked with him, and that was helpful to you too?

- Well, I learned a lot about business at the public market, because my father who ran a wholesale tomato packing house.

It sort of encouraged us to work side by side with him.

But as I worked side by side with him, he would dispense wisdom and had a lot of stories about business that I think helped me later on.

So, I learned the art of negotiation.

In this case, it was negotiating over the prices of fruits and vegetables at a very early age and made deliveries in the public market.

So, I had a lot of responsibility as a teenager in those days as well, but started my career right in the Rochester public market.

- Yeah.

You were only away from Rochester then for a short time.

You went to school in Buffalo.

- [Dr. Valenti] Went to school in Buffalo and Wisconsin for medical school, and then came back, it's home.

- And you went right to work for, at that time you were with URMC?

- Yes.

I did my first couple years as an intern and resident at Rochester General, and then went to a Strong program where I did my infectious diseases training and then stayed on the faculty there for the next 12 years.

And I was there, I was just starting my career at URMC when in 1981, those first cases of AIDS were reported.

- And in your memoir, you recount how you thought that Rochester was maybe not going to have a problem.

This seemed to be New York centric, New York City centric, but you learned very quickly that that wasn't the case.

- Well, the cases started in big cities.

It was San Francisco, Los Angeles, New York City thing.

And because it seemed to be so explosive with young people getting sick and dying, that it was too terrible to think about something like that really happening here.

So, some of it was just waiting for it to happen.

And it was also an element of denial where we kept thinking that, well, it's a big city problem, but we learned very quickly that it wasn't.

- It's almost like looking at the opioid crisis now where you look back a few years and there weren't that many people who had died from overdoses, and then all of a sudden you see this uptick and you're convinced now this is a real problem.

This is a crisis.

Was there a moment where you went from this isn't something that's going to bypass us, this is something that's affecting Rochester and everywhere else?

- Yeah, there were, it happened in stages.

The first reports of AIDS in that 1981 report from Centers for Disease Control triggered a response that was unsettling, that there was something unsettling about reading about those cases.

So, I saved the article and filed it away not knowing what was to follow.

Six months later, first case, and then sometime after that we had 200 people in care.

I remember one night at a friend's house though, and I talk about that in the book, where sometimes those things, that awareness just pops up.

In my experience, it's either pops into my head while I'm driving or sometime when I'm just sort of sitting quietly away from the crowd and it occurred to me that something was afoot.

There was something bad that was, that things were going to change.

And what I failed to realize, because of the nature of HIV, was that things had changed and we just hadn't recognized it yet.

- So, what was there for people who were HIV positive or perhaps had AIDS at that time?

Were the hospitals really set up to admit them?

There were so much misinformation.

- There was huge misinformation, anxiety, fear, and the medical community, though, this medical community, I can speak to the Rochester situation.

Even though we weren't prepared, people, really, it was like a call to action and community groups, medical center, other healthcare people, really made an effort to rise to the occasion.

Puts a different level of responsibility on those of us who were involved intimately in this, because we needed to make sure that people had the right information to do the job, ways of getting people into healthcare.

The question though is, what do you do once they connect to healthcare?

And between 1981 and 1987, there were no drugs.

So, people were desperate for something.

And for a time we ran an underground clinic where we ordered drugs from, well, Japan there was a drug called dextran sulfate that we used and brought in and gave to patients.

There were other drugs that came from San Francisco or large big cities, New York City, where we would give drugs to patients.

And the interesting thing about the era was because of the desperation that people trusted us to at least make an effort to do the right thing.

But a lot of that era was shooting in the dark, that there wasn't anything to do other than treat the complications of HIV.

But there were no drugs available for a long time until AZT was introduced In 1987.

- You made some comparisons or someone has compared some of the work you did kind of underground to the "Dallas Buyers Club" movie.

What was that like?

I mean, here you're a doctor, you're taking some risks, but you know, you know you've gotta take these risks, if you're gonna make any progress.

- Calculated risks.

We tried to have a safety net.

The safety net in those days was that we would follow people very closely.

Well, I'll see you in three days.

Come in in next week.

And kept close tabs on people, but the similarity to the "Dallas Buyers Club", watching the film was like going to work, and it was painful.

It was painful to watch, because they just nailed the story.

It was so accurate.

The hardest part about that was wanting to do something and like working with our hands tied behind our backs that we just didn't have the tools we needed.

So, what we did, my colleague and I, Dr. Steve Scheibel, concocted combinations of drugs that were somewhat unconventional, but we knew how some of them worked.

So, we gave that a try.

Desperate times, desperate measures.

But in the absence of a lot of science and in the absence of any drugs that were licensed, we did what other people were doing, which is to bring them into the underground or put these regimens together on our own and hope for the best.

- Well, this is the early eighties now.

And, you know, you took what was at that time a pretty dramatic step.

You came out as a gay man.

- Yes.

- And particularly, as a doctor who's working on infectious diseases.

What prompted you to come out at that time?

- Well, I started to come out as the AIDS epidemic emerged.

I tell people that epidemics don't wait.

So, my schedule and the emergence of AIDS happen to happen.

My coming out schedule in the emergence of AIDS happened around the same time.

I can tell you that it was a period of pretty intense conflict for me trying to define myself as the AIDS doctor, a gay man, and trying to do something about an epidemic that was explosive and about which we knew very little.

So, the boundaries got kind of blurred in terms of, am I a private citizen Valenti at this event?

Or am I the AIDS doctor?

Or what's going on here?

So, and people who were there at the time, we talk about how the boundaries got very blurred, but learned to live with it and learn to accommodate that, because I was a little bit of all of that to people and managed get through it.

Something like that and that kind of timing helped define me, because I'm still the AIDS doctor to a lot of people.

And if I had to do it over, I'd probably do it the same way.

- I brought that up, because I thought it spoke to things about you and things about Rochester.

One, your courage, and two, the openness of this community, which I found when I came to Rochester.

It's a community that's accepting.

I thought it was ahead of other places I had lived, and your book kind of demonstrated that to me.

But most of all, you know, your courage in coming out at a time when that was not usual.

And for younger people watching this, before the era of same sex marriage and the acceptance of people for who they are, you know, that would've been in a lot of places, something that would've been difficult to live with.

People would've looked at you differently.

The hospital might not have you name, they might have wanted in another place to have reassigned you.

- Yeah, you're right about the community.

This is a very accepting and open community.

And I use the term lead follower get out of the way that we were really able to mobilize people of like mind to help out with the problem.

And found that a number of businesses, private citizens foundations, community institutions, and healthcare were interested in doing something about the problem.

Less so in other places, because we certainly shared our war stories with other people who were doing this work and learned that not every community was as accepting or open as Rochester.

- Now, even with all of the really good medical community here, you still found it important to have a separate place.

Is that what led to the founding of the Community Health Network?

- Yes, as the number of cases increased, it became apparent that we needed another place to handle the increasing numbers.

And the other thing that went into that decision that influenced that decision was that Dr. Steve Scheibel and I thought that we had enough experience and ideas about how to do HIV care that we wanted to be responsible for it on our own and to do it in a community setting, 'cause up until that time of Community Health Network, most HIV care was done in hospitals so that this community AIDS clinic hadn't been tried before.

So, we thought it's time has come.

- I was also interested in some of the people who helped you so much at that time, including the mothers of patients.

- Mom.

- You call them The Moms Group.

- The Moms Group.

Sydney Metzger was a social worker at Strong, and we recruited her for Community Health Network.

So, she became one of the first AIDS social workers who was working in a community clinic outside a hospital.

She recognized very early that the mothers of our patients were bringing their kids to medical appointments, taking care of them when they were sick until they died.

And she thought they needed support and a voice.

So, she formed the mothers' support group.

We called them The Moms.

And there are a number of moms who are still here today who talk about Sid and her efforts to really bring this problem to people's attention, because children aren't supposed to die before their parents.

So, it was upside down, and it was happening every day.

It was a very, very frequent occurrence.

So, mothers were a big part of the early effort.

In addition to coming to appointments with their kids, a number of the moms cooked for us.

So, we were always well fed in Community Health Network, thanks to the mothers.

- The moms were necessary, because it was still so difficult to get volunteers, I guess, and others, because people didn't know how was AIDS transmitted?

How is HIV transmitted?

- Yes, and the mothers became advocates not only for their kids, but for healthcare and helped educate other people so that it was a very interesting era.

A lot of this unexpected nature of the disease sort of created a different dynamic between parents and their children at the time.

And I'll tell you that a lot of families really rose to the occasion and became a big part of their children's healthcare and made a big difference for a lot of people.

And as I said, got out there and talked to other people about this.

So, they became ambassadors for what we were trying to do.

- It starts to make sense now how you were influenced by a great uncle who said you had to have a love for humanity- - Oh, yeah.

- to be a doctor.

A mother who believed in vaccines at a time when not everyone was sure about the polio vaccine.

And friends like Dr. Steve Scheibel who influenced you.

And it seems like you can almost see the Bill Valenti that we all know come together there.

- Yes, I had very good role models.

Managed to work with, connect with people who are enormously committed and talented, even to this day.

People who really and truly wanna make a difference.

And what's happening now with this talk of ending the HIV epidemic is built on those that the past 30 years of activity that led to this.

- Well, you say that's your goal, eliminate the epidemic by 2020.

I was thinking, well, that's a year and a half off.

- It is.

It's right around the corner.

Now, what that means though is that we'll reduce the number of new cases in New York state, and there are other initiatives like this, even globally.

So, beginning to interrupt and stop HIV transmission.

We have the tools to do that today.

Now, that doesn't mean it will go away, that there's another generation or two of work to be done here in terms of what they call getting to zero.

But yes, that's been the goal all along.

The interesting thing about it is that it was a bit vague in those early days.

We really couldn't see it that way, because we were so consumed with and overwhelmed by the sickness and death that it was hard to see our way out of that.

And only with watching and chronicling this over the past 30-something years is a possible today to see the accumulated science and a lot of hard work that led to talking about ending the epidemic.

- How did things work in the transition from Community Health to Trillium?

How did Trillium come about, and what's your role there today?

Because I know you also, like many of us, do some fundraising to help meet your mission.

- Yeah.

Well, Community Health Network, the AIDS clinic and AIDS Rochester, the community organization, merged in 2010.

And for a while the merged organization was called AIDS Care and then merged into or became Trillium Health, which today, is a community health center.

Our major programs, as you said in the beginning, HIV LGBT Health, we do sexually transmitted infections and operate the MOCA centers for LGBTQ people of color.

But overarching is this community health center.

And my role first and foremost, is as I'm staff physician.

I still see patients.

I've seen patients on Tuesdays and Tuesday evenings for the past 27 or 29 years, whatever it is, and still do it.

And that's the part of that role that really has the most meaning and that I enjoy the most, and will continue to do.

The other part of the job is sort of a senior guy now called Chief of Innovation.

- There were people that you cited in your book who were really critical to getting things to where they are today.

One of them was Dan Meyers, the retired head of the Al Sigl Community of Agencies.

- Yes.

- Tompkins.

Some people, particularly, the nurses you worked with that you feel really, you know, sustained you and the others and, you know, got us to where we have these good facilities today.

- Yes.

You mentioned Dan Meyers and Tim Tompkins.

Yes.

Community people who had the same passion and knew that something needed to be done and stepped up to the plate and helped raise money, helped spread the word.

My healthcare colleagues, Carol Williams was our head nurse at Community Health Network and came over from the Strong Clinic and a number of other my nursing colleagues over the years have made extraordinary contributions to this effort.

And this points out the fact that anything that I've accomplished has been with the assistance of healthcare, colleagues, friends, community people, sort of people who have motivated me to do what I can do to help in the effort, but at the same time have been there right behind me in terms of wanting to make some kind of contribution.

You're right, this is really a very accepting and open community that allows these kinds of things to happen.

- Bill, we've talked about your work as an advocate and all the things you've done to try to reach the scope of eliminating the HIV epidemic by 2020.

But we didn't talk about what can the greater Rochester community do to support this effort?

- On an individual level, there's still work to be done.

Getting the message out to young people.

Young people need to be HIV tested, need access to care, need information, and need it in ways they communicate today.

Because as a what, as a parent, or a friend of a young person, we're also mentors to those young people, and they need education, they need encouragement.

And talking about sex and sexuality, sexually transmitted infections, and HIV testing can save somebody's life.

- Bill, we'll look forward to your next book and it's been a privilege having you here with us today.

- My pleasure.

- Thank you.

And thank you for watching.

You can also catch this episode and past shows online at wxxi.org, and we'll see you next time on "Norm & Company".

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