(soft music) (soft music continues) (soft music continues) - I actually reread my journal from that time and it was 11 people who died in that week.

- That was one year, in December of that year, we buried 13.

- Went through 52 deaths.

(weeps) Can we stop this for a second?

- [Director] Sure.

- They didn't wanna acknowledge it and so people died, and a lot of us didn't get to say goodbye.

- We knew people hated us, but we didn't think they hated us that much to let us die in really, really, really awful ways, really awful ways.

(soft music continues) (soft music continues) (gentle music) - I had been following the emergence of it in "The Advocate" and reading articles about there's this thing where gay men seem to be getting this really rare cancer and there's this whole, like, cluster of diseases.

So they're calling it gay-related.

It's really pretty much clustered on the East Coast, a little now on the West Coast and in Chicago and Miami and hemophiliacs are getting it and Haitians and, you know, it's like the joke at the time.

What's the hardest part about having AIDS?

Telling your parents that you're Haitian?

- I had heard about it when it started appearing in things like "Newsweek" and "Time Magazine," but at that time it was called the Gay Pneumonia or some such euphemism for it.

- [Participant] The first reports of AIDS in Kansas City was 1982, late 1982.

- A friend of mine who was in Wichita, she was talking about having seen this patient.

"I think it's that new stuff they're calling ARC, AIDS-related complex."

And I said, "Ah, you know, that's such a zebra.

I'm sure I'll never see it."

- There were many skeptics in our metropolitan area that HIV would ever come to Kansas City.

- The head of the health department continually said, "AIDS will never be a problem in Kansas City."

Because we didn't have a lot of infections that were diagnosed and reported in Kansas City because people with HIV were coming home and they were coming home at that time to die because there was no treatment.

- It galvanized the community very quickly and we all thought we were gonna die.

(gentle music continues) - My boyfriend at the time was an older man and he was very protective of me and was rather jaded.

And the way that he talked about AIDS was entwined with his sort of moral judgment of the friends of his who he knew who were suffering with this illness.

'Cause they were all whores or they were drug users.

- The volume was never similar to what it was, of course, in big cities like New York or San Francisco or Los Angeles.

But the fear and the concern was just as great here.

- Everybody at the Liberty Memorial back then, everybody knew everybody.

You know, you knew everybody and their car and you knew who had the best music and who was the best dressed and who had the best hair.

Of course, you had to have hair.

And we had friends that would wear, you know, short shorts and fluffy pumps up there all the time.

So you had people that everyone knew.

So watching this circle kind of disappear was kind of hard and that's when you kind of knew that it was really happening.

(soft music) - Well, I didn't think there was any way that the Midwest would be spared and perhaps a tiny bit fortunate that we had a little bit of time to gear up for it.

And a little bit fortunate that we knew a little bit about the disease before it got here, rather than the initial introduction in San Francisco where really didn't have any idea why, where, who, and so on and so forth.

- I saw a patient in the office and it was very clear to me what was going on.

So as soon as he left, I got on the phone and called an infectious disease doctor that was one of my mentors and I thought would help me out here.

And he said, "Ah, Sharon, there's not much to be done anyway.

You can hold his hand as well as I can."

I knew that I wanted to take care of people that fall through the cracks.

My heart was in caring for people that don't have insurance and that don't have resources.

Most of the time what was happening is folks would be getting sicker and sicker and then at some point they would lose their job, so they would automatically lose their health insurance.

And so those are the folks that made their way to us and most of those patients died.

Our initial life expectancy when people came in, and we diagnosed 'em with AIDS, was six months.

(soft music) - I was hooked with the science and the uncertainty and the fact that this was an emerging disease.

I'd gone through a life-changing event and made a lot of decisions as a result of that, and one of them was I was no longer going to be a semi-closeted lesbian.

It was time for me to take care of my own in a way.

And at that time it was a very small clinic.

The providers were all volunteers, you know.

So I really felt awful that we had to, at the worst moment up to that point of a patient's journey with HIV, when they were told that they had AIDS, that then we had to say, "We're gonna help you, but now you have to establish care somewhere else."

- It was a different time.

It was very different.

A lot of the people that were dying of HIV had families that maybe they were estranged from, so they didn't necessarily want the family members to know what was going on in their lives.

I was asked to come see a patient at home and when I got there, the person that I was talking to didn't seem to be in any hurry.

And so finally I said, "Did you want me to see someone?"

And they took me around the corner, and around the corner was a bed set up in the dining room.

It was very obvious that the fellow had passed.

And when I said, "You know, well he's already gone.

How long has this been?"

They said, "Well, when I came down this morning he was gone."

And I said, "Well, you've been here alone all day?"

"Oh no, I had friends over.

A lot of friends were here.

In fact, the friends were the ones who told me to call you and, you know, but the friends didn't wanna stick around while you came.

Does it look like a natural death?"

"Yes, this sure looks like AIDS."

And they'd say, "But he was never tested.

We don't know that."

- At the time the stigma associated with HIV was so prevalent.

People were being fired from jobs, kicked out of their homes, being disowned by families.

And so the fear of testing and having your name reported, because there was also this fear of what would the government do with your name.

But the state determined that there would be three anonymous test sites in the whole state.

There was one in St. Louis, one in Kansas City, and one in Springfield.

And so having an anonymous test site was really important because there was no way to try to contain the epidemic without people who were positive knowing that they were positive and taking steps not to spread it.

- I knew that we were seeing a lot of HIV and I knew that there were other people in town that were seeing some and it was such a new disease and we had so little information about it, I felt like we should do some sharing.

- The Kansas City AIDS Research Consortium is one that's about nine weeks old now.

It's a conglomeration of all of the practitioners in town that take care of HIV patients that come for therapy.

The advantage that the Kansas City Research Consortium has is that all of the physicians or healthcare providers that are interested in this disease, it allows us to get together to understand the problems that we have in Kansas City.

It allows us to hopefully design protocols and come out with research that will be specific for Kansas City.

And it allows the practitioners of the city to get alternative therapies for the patients of Kansas City that need alternative therapies.

- One of the things I will always feel good about, and proud of, is how all the practitioners from the major institutions and medical schools within our metropolitan area came together, put the politics aside, at least for a while, put the politics aside and, you know, pursued the goal of being patient-centered.

That the patient was what mattered.

- The joy for me came from seeing people be able to die easier.

(gentle music) So whatever we could do to support that.

- The grief of people you know dying and the fear that you're gonna get it and you're gonna die.

That's your daily existence.

- And, in fact, I'd been to so many funerals that I had a jacket that I've worn to all of them on which I just collected all of the little red ribbons and I had, like, six of them on there.

And I started just cutting up any red fabric and cut up a red T-shirt to make a really huge one to say, "Goddamn it, do something about this."

- It just felt like this thing hit and there was no hope on the forefront.

It was a scary time, but it was also a time where people really pulled together and they came together.

- The city responded by setting up an office in '83 and it ran a hotline and it ran some support groups.

What happens is this real tension between organizations trying to respond and what the community sees as its needs.

And so that first response by the city in '83, what we now call the LGBT community, was very suspicious of it because they didn't reach out to anyone in the LGBT community.

The common assumption was all this money's being spent on these bureaucratic responses to the crisis instead of giving money to people who are afflicted.

You know, the President wasn't on the TV every afternoon explaining the latest things the government did to try and manage this issue.

It was all coming from the ground up.

- We were desperate, but we weren't hopeless because without hope there would've been nothing.

And we knew we had a community of brothers and sisters and others, and we had to lean on each other in ways that we had never relied on each other before.

- And there was something that was so important back then.

It was the relationship between the lesbian community and the gay male community.

Without our sisters, we would've died.

Without our sisters, we could not have accomplished as much as we accomplished.

- You know, it was the lesbians taking care of us because if we weren't actually ill, then we were spending so much of our time grieving.

And I say that's smiling because gotta get through it.

- I went to a general conference in 1985 at Sacramento, California, and many of the people that I knew and were friends with from when I had been pastor in San Francisco were not there or were ill, and at that time I realized that what happens there probably would happen here.

And so I personally began investigating and looking into and researching everything there was about AIDS that I could find.

I thought it was just gonna be a matter of me linking up a volunteer with a buddy.

I mean at the beginning, that's about basically what I did.

They were going to visit them at home to make sure that they were eating, drive them to doctor's appointments, to help people get their medication.

Our very, very first client that passed away, his name was Dwayne Wimberly, his buddy was Joe Chanowski.

And Joe took care of him and Dwayne passed away.

So he called his family.

His family wanted nothing to do with him.

And so the church assumed the responsibility 'cause it was our first client and we did not really know what to do.

And we paid for his cremation.

His ashes to this day still remain in the chapel at our church.

We wanted to make sure that he had a resting place where he was loved and he was supported.

What we did not bargain for was that he was the first of many.

And as we started losing clients in the project, it became apparent that we couldn't do it like that anymore.

And so we had to become very, very creative and we wound up with benefactors all over the city.

Basically, The Good Samaritan Project outgrew the church.

It has to do with the Parable of the Good Samaritan.

There were many people who passed by that did nothing for this person who had fallen among thieves.

And it was the Good Samaritan who stopped and took care of that person.

It was one of the gospel stories that our congregation related very, very strongly to to.

And I could not remain as executive director of Good Samaritan Project and as the pastor, and I had to choose.

And it was at that time that I hired Virginia Allen, who was a member of our congregation.

- It was at a board meeting if I remember correctly of the church.

And Tony was on the board and she came home and told me, "By the way, I volunteered you."

"Okay," you know?

So the first day on the job was me doing some research on what do I need to be able to tell people that are volunteering.

And then we talked about what kind of training are we gonna need and who was gonna come do it?

'Cause I knew I couldn't do it.

I didn't have the experience.

- Oddly enough, my best friend in San Francisco that I used to live with, we were roommates, and his partner were very, very active in the San Francisco response.

And they did our first training.

(soft music) - Back then, GSP was, it was the only game in town.

And so it was just a constant flutter of activities.

There was an enormous body of volunteers.

- We'd trained over 1,500 people.

Now not all of them were active, but I'm thinking at least 1,200 were active volunteers.

Some of them were part of the speakers bureau.

Some of 'em were actually allies.

At that time they were called buddies.

And I thought that was kind of not gender neutral.

So I called them allies.

Some of 'em were advocates.

We needed people to, what we used to call sussing, stir up stuff.

You know, if somebody in the hospital, if we got a call from someone who said that the staff at the hospital wouldn't bring their food trays in they'd leave them outside, then we would go to the hospital and we would talk with people and make sure that they knew this is not acceptable.

- The society wasn't particularly welcoming of out gay people, and sick out gay people were particularly unwelcome, especially with this phantom disease.

- I would get phone calls from Kansas, Nebraska, Oklahoma, "We have a person here with AIDS and we don't know what to do with them."

People were so anxious for information and I think that was the key.

Everybody by 1985 had heard of AIDS, they knew it was bad, they knew it wasn't gonna go away, they knew there was no cure, they knew it was a heartbreaking thing, and they were hungry for information.

What can I do?

How can I protect my kids?

How can I protect myself?

How can we just survive this?

- [Participant] Until '89, when you went to the bar every weekend, you tended to see the same people.

It's a small community, right?

They're still around, they're still around, they're still.

You didn't know their names or anything, but you just knew their faces.

And then when you didn't see a face for a while that was cause for concern.

- I haven't seen this person in a while.

Oh, they have AIDS.

Or what happened to?

Oh, he went home and died because he had AIDS.

And it got to be the punchline to the worst joke ever, is that it always ended with, "Oh, he had AIDS, he died."

- Helping a person to just relax and to not be afraid, to assuring them of God's love, and assuring them of God's understanding of who they were.

And in doing that, then I think people were able to pass more serenely.

We also decided that we needed a place where these people who could no longer take care of themselves could go and feel safe and be nurtured.

And so we brainstormed and we came up with the idea of the Good Samaritan House, and that's what we called it.

It was not an ideal situation, but it was better than them sitting by themselves and dying alone.

- The hospice opened while we were through our training and Virginia came up to me and because I said, "There are a lot of things I wanna do, but I don't know really know what."

And she said, "I think the hospice would be a good fit for you."

And I thought, oh, okay.

So I was one of the first volunteers to do the night shift there.

And it was scary, terrifying.

The fact that I was gonna walk into a situation that somebody could die that night and I had no idea what to do.

- We were given to understand that by the time we met folks we were probably going to be helping them to die.

I think it's important for us to remember that the hospice movement was very much in its beginnings at that time.

We were helping to invent that with this work because we didn't have any choice.

They were sick and they were dying.

We had to help them cope with that and escort them toward that.

- I mean, I remember more laughter really than crying and breaking down.

I mean, we did have a kind of a gallows humor.

There was a guy, his name was Jerry Dyer, and he graduated at the Art Institute and he was hilarious.

And then on the day he died, I noticed there was a magic marker next to his bed.

And I thought, oh, Jerry, what have you done?

But I was taking his shirt off and he had drawn a happy face on his stomach.

It's like, oh my God.

I don't want these guys to be forgotten.

And I know the NAMES Project did a beautiful job, but how many thousands and thousands of people did they miss just because nobody cared?

- When someone passes in your presence it's a great gift and you can feel their spirit.

You can feel almost like an electricity in the air, but it's not like your hair stand up on your arms or anything.

It's just a presence.

And I always felt like by sitting with them, you're demonstrating one last small act of love.

(gentle music) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music) - Until a more effective drug or a vaccine is found, the main weapon we have against the spread of AIDS is education.

- If the parents are saying, "My God, "don't talk to my daughter about sex."

I'm not, I'm talking about saving her life.

- We laughed and joked and we just had to because the next phone call was gonna be someone else has died.

- This wasn't isolated anymore to them.

It was us.

(gentle music continues) - [Reporter] In the last year alone, more than a hundred men, women, and children have died of AIDS in Kansas City.

- Ryan White, he was the preteen when he contracted HIV and that was through a blood transfusion.

But he became a poster child because, you know, his family had to move.

They were ostracized from their community the strength and the endurance, and of just saying, "I'm just a kid, and it's an illness."

It was the beginning, I feel like of the shift away from, oh, this is only affecting gay white men.

(birds chirping) - [Reporter] The Good Samaritan House has provided direct care for dozens of men and women with AIDS.

Since 1985, it's been a stop gap hospice for area hospitals and nursing homes.

The Good Samaritan Project says it can't find government funding for that $100,000 a year AIDS hospice.

Instead, those government funds have been channeled into AIDS testing and education.

- In the spring of '88, Virginia announced that they didn't have the money to keep the hospice open so they were gonna close it.

- We'd opened Samaritan House and it wasn't licensed and the costs of it were overriding every other program that we had, and we had so many programs.

(classical music) We were in danger of losing the entire program to the house alone and the house could provide services for five people.

But the project had, I don't even remember, well over a thousand clients, whether it was parents or siblings or the person infected.

So, the board decided that we had to close Samaritan House and it was, as you might imagine, an extremely unpopular decision in the community.

- Because this was out of the blue and it was the only place for people to go who were sick, who didn't have a place to live.

So Sandy Berkley, the wife of the Kansas City Mayor, Richard Berkley, stepped in and secured a hundred thousand dollars in funding to keep the house open.

Part of the stipulation of this money was that the hospice had to break away from GSP and become its own separate entity.

- AIDS patients in Kansas City will keep their home.

We've told you about the problems of the Good Samaritan House.

- Well, tonight, some of those problems are solved.

- And Peggy Breit is in our newsroom with the story, Peggy?

- Well, Larry and Laurie, the house, of course, has been plagued with problems, insurance troubles, code violations, and a shortage of money.

Well, now there is a plan and it includes federal, state, and local dollars.

- We have a goal which will include short-term help and long-term planning.

- [Peggy Breit] The short-term help involves keeping the house for AIDS patients, but changing management.

- Then the remainder of the Good Samaritan Project can focus on things like counseling and client services and educational outreach and fundraising.

And interestingly, one of the first groups of people that get approached are drag queens because drag queens are good at making money.

(upbeat disco music) - You know, we're part of the entertainment in the city, and they give to us.

You know, the bars pay us, the audience gives us tips, and I know for me to give back I have to give up stuff that I make by doing benefits and helping somebody else.

So we get, and then we give.

- There was a troop of drag queens that was founded in 1986 called the Kansas City Trollops that did nothing but raise money for the AIDS service organizations that were around.

- The first time I saw them, I just fell in love with them because they were fun.

And it wasn't about being glamorous.

It was somebody needs help and this is what we can do.

When I was in my twenties, these were 70 year old, 80 year old men throwing on a wig that you know they found at a thrift store and their mumu dresses or these crazy looking prom dresses, big jewelry that, you know, you knew that all of this came from a thrift store.

And they would get up there and they would pour their hearts into these songs to raise money.

And they would stand up there and say, "We are doing this for this person.

"This home needs help."

And "They've got our brothers and sisters there."

And their tongues were quick and their wit was quick.

And I learned a lot.

- Until a more effective drug or vaccine is found, the main weapon we have against the spread of AIDS is education.

- What we're really trying to do is how do you effectively increase the level of knowledge in people, reduce the fear level, reduce the rumor, misinformation, that type thing.

- I'm not exactly sure when I started with the Gay Talk Hotline.

(somber music) It was somewhere in the early eighties.

I heard about a conference being held out in Denver, a lesbian and gay health conference.

It was at that meeting that I sort of associate the first mentions of safe sex.

At the same time, the Gay Talk Hotline was getting more phone calls about AIDS.

And it looked to me like, or we need to do more.

And that's when we started the Condom Crusaders.

(somber music continues) Typically, we would go into a bar and be there for maybe an hour or two.

I would frequently compare it to the old time cigarette girls that the nightclubs used to have with their big box of cigarettes that they would walk around the clubs in.

We would walk around with our boxes of condoms and lube and just try to get people interested.

Everybody was always telling me, you shouldn't go out at night and you shouldn't go to these neighborhoods and things like that.

And I had realized when I started going to the bars was that I was the people my family was afraid I was gonna run into.

(somber music continues) - One of the most powerful things is the gay clubs, open arms.

(somber music continues) A Mr. Alvin Brooks stopped me in the parking lot of the Linwood Shopping Center and he asked me would I like to attend a Ad Hoc monthly meeting.

And I told him "No."

He said, "Why?"

And I said, "Aren't you all those fools that march "in front of drug houses?"

And he said, "Yes."

I thought they were crazy.

He ask me again a couple of months and I left out a little part, a couple of times I read in "The Call" paper and even in the store where they had marched in front of drug housing and actually shut those houses down.

So it, that kind of impressed me.

So when he asked me again, I said, "Yeah, I, you know "I'll come to the meeting."

So one day Mr. Brooks asked me, he said, "We have a couple "of openings for board members "and would I be interested in it?"

And I said, "No."

He said, "Well, if you change your mind."

And you know, then I, as a board member, found that they had applied for a grant for HIV AIDS outreach program.

I was the program leader.

The target population was teenagers, gay males, ladies of the evening, prostitutes, you know, I don't like that word, but, and IV drug users.

Some people from CDC who came down and trained us of their program, they passed out needles.

We had strong resistance against that here in Kansas City.

But we were able to get around that.

We went into crack houses, you know, we went into drug dens but we were out there and visible.

So, you know, people began to know who we were, you know, all that Ad Hoc, you know.

"Hey can you got some of them colored condoms."

And then we started going into the schools which was another difficult problem because some of the school official was resistant to sharing with kids about HIV and AIDS.

But once we convinced them from information that we got from the health department, that teenagers having mad sex, they kinda start coming around.

- This is Jeanie Zen and Jeanie is the coordinator of the teen hotline, why a teen hotline for AIDS.

Because teens can talk to teens.

If they can talk their language.

They can say it in their words, whereas an adult necessarily might not A teen wouldn't necessarily call a hotline knowing that they're gonna get an adult because they may judge them and they may not ask the question.

They may feel guilty or feel like, oh, I better not do that.

But if they know they're gonna have a teen on the other line, they're gonna get their answers.

- Anything shock you about that?

- About teens talking to teens?

No, what shocks me is when I do AIDS education and I go out to the schools and the parents are saying my God don't talk to my daughter about sex.

I'm not, I'm talking about saving her life.

- I went to high school at St. Teresa's Academy where we were required to do a service project and I chose Good Samaritan Project.

And when I talked with them, they said "You should really be working with the Teens Tap program."

(phone beeps) - Teens Tap, this is Steve.

- [Reporter] Another source of AIDS information in Kansas City has a national scope to it.

It's called Teens Tap, or Teens Teaching AIDS Prevention.

Close to 200 Kansas City youth volunteer to man this toll free hotline.

- And that's actually where I started to get to know my buddy, Rob Black.

And Rob was a wonderful person, a volunteer for Good Samaritan Project.

He was a Teens Tap Hotline Supervisor and a very good one.

Nobody really messed with him, you know, especially, as a supervisor on the Teens Tap Hotline.

You felt like you had your leather daddy dad who was gonna take care of things if someone got weird.

Answering the phones felt good to be able to give correct information out about what we know and dispel some misinformation.

But the speakers program started to grow as well.

- I was overwhelmed with speeches.

I could not, and everybody that called wanted me.

And I finally would say, "Okay, we'll be there."

- We tried to get a teenager and a person with AIDS to go.

The one engagement, Rob and I went on to a high school in Independence and they were not having a lot of it.

They were yelling gay slurs.

They were calling me names.

And of course the staff was horrified.

It was really disturbing.

And we went back to Good Samaritan Project and we proclaimed it National Hug a Gay Man Day because I just felt that was the vitriol that was happening.

I saw it.

I saw it.

- You know that was a period when people were just so fearful, anyone that had had AIDS, people were afraid to touch them.

They were afraid to, you know, so there was, they didn't wanna hug him.

They didn't want them in the same room as them.

They were afraid to use the same dishes.

- I had a client who, his family when he learned he had HIV, they put him out in the garage.

They had a bed, they had the blankets and that's where he lived.

And I talked to the family.

I said, "Why is he out here?"

"Well, we don't wanna get, we don't want, we had a baby.

"We don't want the baby to get sick."

And they said, "Well, we'll get you some water."

I said, "No, I'll just take a little sip of his."

I said, "Do you mind if I take a sip outta your glass?"

And just, I was just showing them in my quiet way that that's not the way you're going to get it.

- The last place people wanna go and tell that they have AIDS or HIV is the church, 'cause the first question that they gonna be asked, how did you get it?

Are you homosexual, are you promiscuous?

Are you on drugs?

And I know this is outta fear because we wanna believe that if we're not gay and if we're not out the streets doing something wrong, we can't get it 'cause we're in the church and we good.

We don't do stuff like that.

A lot of black in church do not believe that it's an epidemic because the people who have it don't come forward.

- When we started to engage with this and we found the startling numbers of African-American new infections, African-American deaths as opposed to our white counterparts, the question comes, well, how do you get information to that group?

And we noticed that on any given Sunday, 70 to 80, maybe even more percent of African-Americans are attending somebody's church or they have some kind of relationship with a congregation in that area or, or within their family.

Most people trust their pastor.

They trust the information that comes from the pulpit.

And so we want arm clergy with the correct information.

- Fred Phelps, the disbarred attorney from Topeka who was virulently anti-gay picketed me personally five times.

He accused me of writing things about lesbian and gay people that was sinful.

He would send me faxes.

I took it as a badge of honor because I knew that he was just absolutely dead wrong about all of this.

- That's how he got his start, was protesting at the funerals of people who had died of AIDS, carrying their hate filled signs at the funeral and sending these hideous faxes to the funeral home and to the family.

- People are grieving, family members and close friends are coming in to say goodbye to this loved one and they were, you know, had their signs that everyone was going to hell.

- There were so many people who had so many compliments about Keith because of the worship through music that he created in this sanctuary every Sunday.

After Keith passed, the youth choir said that they would never let Fred Phelps and his gang come to Keith's service.

And I thought, what a wonderful thing for that generation, high school kids, to be so protective of him.

It was a shining moment.

During the reconstruction time of our church in 1991, the congregation was invited to write on the walls.

My son, he wrote a message.

He said, "Thank you Keith, for all you taught me "in this house."

Sorry, this always makes me cry.

"Your music will always be heard here."

(somber music) - I had this person, his name was Rodney, and he was a person that didn't have anybody coming to visit.

He didn't have any family members or any friends.

And he just kind of kept to himself.

I'd asked him one time, "Do you wanna go to church with me?"

And he said, he just shook his head, yes.

So I took him to church.

And of course the church, you know at that time they didn't accept people but I didn't ask if I could bring him or not.

I just took him in and they were very nice.

If you're gonna be a Christian, you're gonna have to have a heart to accept people wherever they are.

Doesn't make any difference.

- The disease was seen as sin.

A disease can't be sin.

Unfortunately, many of our clergy men and women had people in their family that were perishing.

Helped a discussion to start because it just wasn't isolated anymore to them.

It was us.

(gentle music) I had a great relationship with some of the funeral homes in town.

This particular day, one of our good friends called and said, "Pastor, I got a big favor I need to ask."

I said, "Sure, what's up?"

He said, "Well, look, there's a kid that passed away.

"But when his pastor found out how he died "and he refused to do the eulogy "and he refused to allow the service to go on "in his church."

I said, "Oh."

I said, "What's the deal?"

"Well, he died of AIDS."

And the kid happened to be gay.

And so that's two strikes according to this particular pastor at this particular church.

And they wanted to know if I would do it.

I met the young man's family.

They showed open love to this gay kid and at the time it was kind of okay for fathers of gay black children to disown them.

This family showed me so much the way they embraced, the way they loved, the way they were compassionate to not only their son but his friends.

It was life-changing.

And in New York, the Harlem section of New York, there's a young lady, she's not young anymore like me, that's her name was Pernessa Seele.

She started this program realizing the same thing that we were struggling with, trying to get churches and pastors involved.

She came up with this thing called the "Black Church "Week of Prayer for the Healing of AIDS".

It was very successful.

They had a myriad of congregations that marched, that put on programs that rallied support.

And Kansas City was one out of eight major US cities to try to replicate that program.

And I want to say that we had the best national observation.

So I'll go ahead and say that, we had the best national observation of the week of prayer, it's a week of activities and sessions and educational opportunities.

They gave us opportunity to just be there and to care.

(gentle music) - Those were actually the best years of my childhood was when my dad was alive.

I had just turned eight.

So, I turned eight in March and he passed in May.

I did not realize he was sick until the very end because since I had spent most of my childhood in hospitals, I thought that's what everyone did.

There was almost just because of the times two sides where he had this huge amount of friends within the gay community and the gay culture.

And at the same time, he had all these friends from church and everywhere, no matter what type of community he was like really loved.

We were very, very close.

It was very hard for me.

I have had a tantrum at the grave site.

Even now, I'll write him letters and leave them at his grave site.

And it's been 30 years because I feel like he actually talked to me and understood me.

Some people have that ability to actually listen to people and connect and that's why he had so many friends.

He often struggled, I feel, with the times and his sexuality and his own humanity.

He has all these writings about what God did for him.

And it was kind of interesting to see that with what the times were, how much he still was able to have that relationship even when the world's views might've told him that he couldn't have that relationship.

(gentle music continues) - Sister Kevin Marie Flynn was a nun who became very active I think through the Good Samaritan Project and other ways in AIDS work here.

She was a gift of grace to us all.

She was a sweet and gentle woman but there was a core to her that was just rock solid.

- I started going to the house almost every day and that's where I met a nun.

Her name was Sister Kevin that would come every Thursday and cook.

- And they'd be laughing at the table.

You would just think that you were serving a group of people that had the best of everything.

They never talked about dying.

They'd be telling jokes and around the table that's what I used to notice more.

And sometimes on my way home, you know, I would, tears would come to my eyes to think about how much the Lord had spared them of fear.

Still they were full of life even when they had a disease that was taking their lives away from them.

- She was just not only very important to my buddy, Rob, Rob Black, because he was Catholic and he very much connected with her.

- I remember I had one mother come to me at a meeting of some kind and she said, "You know "I'm really jealous of you."

I'm thinking, oh, why?

I said, "Why?"

And she said, "My son just talks about you all the time."

Well, I knew why her son talked about me because she didn't accept him really as being gay or having AIDS.

I think I was used a bit, but that was right in a nice way.

- I was with her in the room when Mark passed and I don't remember his last name at this point.

I think there's a certain point where there was so much grief.

So that was hard to be there.

But there was no one else in that room, you know, besides a kid on spring break from high school and Sister Kevin and it felt important.

It felt hopeful because he also chose to pass at that time.

I know it.

(somber music) They did nothing wrong.

You know, it wasn't because they were gay.

It wasn't, they weren't doing anything wrong, you know?

And at that time, that was a very important point to get across.

This was an illness that needed funding to figure out how to fix, you know.

There was a lot of activity, a lot of grassroots action.

All of these organizations being formed and staffed and so many volunteers, so many helpers.

- [Speaker] It was heroes in the community who did what needed to be done to effect some change and to make people's lives and people's deaths a lot easier.

- We were at a wake and somebody came in with a little bit more alcohol than he should have.

(laughing) The family member was there at the coffin, you know, and so he tried to push him away 'cause he wanted to put his hand on the corpse and talk out loud, you know?

And so it was distracting everybody, I guess.

And there was another sister with me and she said to me, "Sister Kevin, do you want to leave?"

I said, "Why?"

And I said, "I'm Irish and the Irish love to fight.

"We love a good fight."

That's what I said.

- You know, I want to share one story with you.

It was a story told by Rabbi Kushner.

- I was doing an interfaith radio program one day, and I was introduced to the Protestant member of the panel, who told me he was pleased to meet me.

He was an evangelical, and he just had a healing service for people with AIDS, and they used a reading for my book.

I hear him say healing service, evangelical, and I say to myself, "Oh boy, I've got an Oral Roberts on my hands here."

So I said to him somewhat sarcastically, "Oh, I didn't know you could cure AIDS with prayer."

- The minister said, "Oh, you misunderstand me.

We were praying for this young man who, when he learned he was diagnosed with AIDS and shared it with his roommate, his roommate threw all of his possessions out on the street and threw him out of the apartment, and so we were praying for the healing of that man's relationship with his roommate.

And when his parents learned that he had AIDS, they disowned him and said that he was no longer their son."

- We weren't curing anything.

We were healing the relationship between the person with AIDS and his family, healing the relationship between the person with AIDS and the most important person in his life.

- They were praying for the relationship with the man with himself, who was racked with guilt and self-loathing and self-hating for creating a situation where he would be exposed to AIDS.

And he said, "We let the disease, we leave the disease to God's hands, but we're praying for the healing of these relationships that have breached."

I think that's a universal story that particularly in those early years of AIDS, it really says a lot about what gay men were going through in this crisis.

They were left without loved ones, without family, hating themselves and dying alone, until a community of people stood up and said, "We have to make a difference."

- We are here to celebrate Club Cabaret's incredible achievement.

$250,000 raised for AmFAR's programs in AIDS research.

- We decided to start sending money to AmFAR right after the Kansas City Free Health Clinic, and that's when AmFAR really was taking effect.

That was Elizabeth Taylor's foundation, so it just made perfect sense that that's where it was gonna go.

I used to own a restaurant on Westport Road and Main Street.

We called it The Bridge.

I would dress up like Flo from the show "Alice" and go to the Cabaret and pass out free appetizers, buy one get one this, or whatnot.

I remember the first time I went to the Cabaret, I sat out in my car and was scared to death to walk in there, not knowing that night that someday I would work there for many, many years.

There were Beer Bus all throughout the city, but everybody knew at whatever time from their bars that they went to, Tootsie's and Sidekicks or SideStreet or whatever, Flo show's getting ready to start.

♪ Flo was a mighty voyage gal ♪ With Roger Cast in tow ♪ 20 drag queens set sail that day for a three hour show ♪ ♪ The weather started getting rough ♪ ♪ The tiny ship was tossed ♪ If not for the courage of the fearless Flo ♪ ♪ The FR would be lost ♪ Her ship set ground on the shore ♪ ♪ Of this uncharted desert isle ♪ ♪ With Captain Flo and Roger, too ♪ ♪ Her big, mean boss and his wife ♪ ♪ Miss Desiree, the stage crew and Yopie and ♪ ♪ Here on Cabaret Island - [Announcer] Ladies and gentlemen, Flo!

- They would keep the doors locked on purpose to get into that big room, to build that anticipation, and people would sit along the walls all the way down the hallways to be able to get in there first.

And I used to, it was my favorite thing to do, I would go up in the DJ booth because it was dark up there and I'd watch them open the doors and I could watch the people run in.

That brought me so much joy.

- In Kansas City, there are about 4,500 people who have been diagnosed with HIV or AIDS.

More than half of them are alive today.

- The main thing I remember is going to what at that time was the health department.

Going in there for one thing, which was a rash, kind of like a rash or raised bumps on my neck and then having different tests being done, and then just being told I was HIV positive.

I wasn't even going to figure out if I was positive or not.

I didn't think the rash had anything to do with it.

It was just, you're positive.

That's it.

- HIV itself caused fatigue, GI problems, diarrhea, histoplasmosis, cryptococcal meningitis, esophageal candidiasis.

So thrush that you would see in the mouth would actually go down the throat into the esophagus, made people very ill. And then you gave them meds, which were, I don't know that they were toxic, but they definitely had a lot of symptoms associated with them.

They could have side effects that were pretty awful for them.

- I just remember that we had to take, I don't remember exactly how many it was.

I just remember it was, to me, it seemed like a handful of pills, and we had to take them every four hours.

I used to often get asked, "Well, do you have to take them even while you're sleeping?"

I'm like, "Yeah, we have to clock every four hours."

I really wasn't adherent to the drug regimens, which in that instance probably was a good thing, because I probably would not be sitting here having this interview with you (laughing).

I say that because it didn't create a buildup of that in my system, where a lot of people that were adherent and taking it all the time like they should be taking it or like they would being told to take it, it builds up their system.

That would cause a lot of the complications as to why a lot of people died.

- People lost jobs and people lost housing.

People would be kicked out of apartments because it became known they had AIDS.

- Housing was, you know, if we don't have stable housing, nothing works.

The problem with AIDS early on that people were being put out of their houses or they were being put in attics.

We had so many stories of people who didn't have a place to stay.

The SAVE Foundation was originally established to support the Good Samaritan house.

The board really wanted to improve the surroundings because people were starting to stay longer.

So, I wrote a grant.

I typed the grant on the typewriter my mother gave me when I graduated from high school in 1970, and it was actually for nursing home facilities, something like that.

About three weeks later, I got a call from someone and he said, "Who in the hell are you people?"

And I was like, "We provide nursing care for people with a chronic disease."

And he said, "Is this HIV/AIDS?"

And I said, "Yes, sir."

He said, "Well, I'm coming to see you, because somebody in Washington told me I had to."

He came over and he said, "Wow, this is it, huh?"

And I said, "Yes."

He said, "Well, you asked for funding to sort of make some improvements here," and the rest is history.

So he became a real strong advocate for us.

We were able to renovate.

We ended up reducing the amount of bedrooms, but it was a much more accommodating space.

The kitchen became huge, because that was all that, later, that's where Elizabeth Taylor sat, and we put the chair up on the wall, because no one ever sat in that again.

No one was ever allowed to sit in that chair again.

- I don't know exactly the origins for the model that was used to create the AIDS Service Foundation, but it was brilliant.

At the time it was created, there were four primary AIDS Service Organizations in Kansas City.

The Good Samaritan Project, SAVE Inc, HARCMart and Kansas City Free Health Clinic.

- Everybody was asking the same donor pool for support of the AIDS fight.

- The AIDS Service Foundation was a way to try to end that competition and create a collaborative fundraising vehicle that would raise money for all four organizations and then equally distribute the money out.

- Steve and Sandra Schermerhorn and some of the other like-minded people decided to put the foundation together, and that they would have one fundraiser, being at that time Walk for Life, today's AIDS Walk.

- The eighth Annual AIDS Walk for Life is the single largest fundraiser benefiting AIDS/HIV research in Kansas City, and walkers have raised more than a half million dollars for research and care over the past seven years.

- It had actually been a function of, at the time, Good Samaritan Project.

Good Samaritan Project gave the foundation, so to speak, the walk to do this fundraising through as a vehicle.

That is when, I think for those four or five years, it was all the volunteers from all the different organizations trying to make sure that the walk at the time was successful.

- I remember a friend of a friend said, "I'd like to take you and show you something."

He took me to a house, and while we were there, this pickup truck came up, and there was this elderly gentleman got out of it, and his son was just in the back of the pickup truck, and he helped him out and just sort of left him.

I'll never to my dying day forget that moment.

I mean, seeing the condition that he was in and that his father would just drive off and leave him there.

So, that impression then stayed with me, and that was sort of where I think I really got involved with DIFFA.

(soft music) Kansas City formed a DIFFA chapter, and as our second major fundraiser, there was an event touring nationally that was called "Heart Strings, an Event in Three Acts."

It was a traveling show that had been put together out of New York.

As a thank you for the patrons who had paid the most to come to the event, we decided that we needed to probably have some sort of thank you before event that turned into being a sit-down dinner.

We could not afford to do tables all alike.

I would simply ask different creative people that I knew, because at that time, the whole DIFFA chapter was pretty much made up of florists and designers and architects and all sorts of creative people.

So each person simply did their own table, so it turned into be quite interesting.

The next year when we decided that we were gonna do our own fundraiser locally, we decided, okay, we would build Dining by Design.

- I remember when we started AmFAR, we got so much grief, a lot from our own community, that we were taking the money from Kansas City and sending it to New York when they wanted it to stay local.

My thought was that I want to put AIDS Walk out of business.

I want to put SAVE Inc. or Hospice, whatever, my job was to put you out of business.

The only way we, that I knew how to do it, was to send that money to AmFAR, because they were only doing research.

In my head, I was like, "If you're already in a hospice, it's too late."

Cut it before you get there.

So we're sending that money to New York, and some of that money went to do some funding right here in Kansas City, but who cares if you found the cocktail mix and what they were all trying to do and it was at some other state university or whatnot.

It eventually got to us.

It was very controversial that we were taking thousands and tens of thousands of dollars, hundreds of thousands of dollars, and sending it away.

- Just a second.

You were diagnosed as HIV positive in 1990.

- October of '91.

- And how are you doing?

- I'm doing fine.

There are no signs of any illnesses that come along with the disease as of this time, which I'm very thankful for.

- You were telling me before we went on that one of the reasons you're nervous is just speaking about your status here with the disease.

Why have you elected to increase your profile and talk about this on citywide TV here?

- Because I think that it's very important, because as we all have seen and we all find out that there is a lack of education out there, and we need to have people speak out.

Yes, it does cause me to be nervous a great deal, but I know that it's important and needs to be done.

Another part of that really, I guess you could say lit a fire for me was I wanted to be the voice for those who could not speak up for themself or who were afraid to speak up for themself.

Part of those people were the Latin community.

Torean Walker was my mentor when I first got involved in the whole HIV arena.

Him and another gentleman by the name of AC, we got labeled the Three Musketeers.

I think we all three had that fire, that passion inside of us, and it was just like we were going to do what we needed to do, whether you liked it or not.

We wanted to make sure that our respective populations, the communities, but you know, it wasn't so much a separation thing.

It was like, because AC and Torean are both African American, I'm Latino.

We just see people that need help.

- We also started seeing a shift in the population.

In 1992, 8% of the population we served were African American.

By the end of 1994, it was 50%.

- The issues when I arrived here in Kansas City included things like both the African American and Hispanic communities feeling like not enough funding was being directed on the prevention side or on the Ryan White side.

The Ryan White Planning Council is something that was written into the Federal Ryan White Legislation, and it was intended as a way to ensure that community had a voice in how dollars were spent.

- I really liked to actually see and to be a part of the decision-making process and to actually be able to help determine where the monies are going to go.

I wanted to be able to help bridge that gap in making sure that they got equal representation as far as funds were concerned and things that were gonna help that population.

- When I first went in and started working in the clinic, I became introduced to drug reps.

These are people who work for drug companies.

Keeping in mind we only had AZT and a couple of other drugs.

They became very invaluable as far as helping me educate patients.

And one day, one of the reps happened to be sitting in my office when I got a call from an emergency room doctor at St. Joseph's Hospital in St. Joe, Missouri.

The doctor wanted to know if we had any IV AZT, because they had a pregnant patient who had not been in care but who came in labor and they needed to give her this IV drug and they didn't have it.

So I put them on hold.

I called down to the pharmacy.

Yes, they had some IV AZT, and they would send it via state patrol.

Then I got a call back from pharmacy.

The state patrol was unavailable.

They had multiple wrecks they were overseeing, so it would be hours before they could take the drug.

So the drug rep, AZT was not his drug, but he said, "I'll take it up."

The drug rep took the IV AZT to St. Joe to give to that patient, who he probably would never get credit for in his sales district because the patient wasn't on his drug.

But that was what we saw, that generosity of drug reps at that time to do the most they could.

- The Requiem Project was an early effort to bring the social country club crowd and corporate community into the fight against AIDS.

They put on a concert that was written by a Kansas City man, A Requiem for AIDS.

It was a beautiful concert by the Kansas City Symphony Orchestra.

That was kind of one of my first exposures to Steve Metzler before I met him.

Steve's epithet on his grave marker is "Changing the world one cocktail party at a time."

He loved to bring together people from diverse backgrounds and different perspectives and bring them together to help make a difference around things that were important to him.

The Requiem Project and Dining By Design were really very early successful events in raising money outside of the gay community, which really was important at that time.

- From the early days of my work with the foundation and the walk, I didn't have any great knowledge, but I could tell it was going to take the whole city, not just a small group of people that were directly infected to make a difference.

And so you look at it, and I certainly did look at it as a campaign, and how do you go about putting this basics of a campaign together?

You bring in as many community groups that you can.

Del Hall was very supportive of our efforts, and I can remember her telling Steve Metzler and I that you have to tell your story over and over and over to everybody that will listen.

- We'd maybe been doing the Flo's Beer Bus for a couple years.

Dunbrook got a call and said we would like to hire Flo to come to a private birthday party.

John Brooks said, "Well, Flo doesn't do private shows.

If you want to see Flo, you have to come to the Sunday Beer Bust."

And so the guy had told him, "We haven't missed a show, and this is probably gonna be his last time he has," I'm gonna cry.

(John exhaling) This is back when we had strippers.

I remember one of the strippers, I'd worked with him a lot, so I knew him pretty well, and I said, "Hey, we're gonna go do this birthday party."

It kind of had to be in the winter because it was freezing cold, because they had us sitting out on the porch because they had to go move the coffee table.

This is when we had boom boxes and cassette tapes.

I remember handing him my cassette tape and I came in to "Knock on Wood."

I remember the song to this day, did my thing.

He was crying and we made his birthday.

I said, "Oh, I'm not your birthday present."

I said, "This is your," and I brought him in and he did his thing for him.

In December, I got a card at the Cabaret that he had passed away.

That's when I realized what we were doing was way bigger than us.

- We as a design community, none of us had much money to do anything with, but we decided that we had contacts.

We did the hair of Mrs. Whatever.

We did the interior of whatever.

We did the landscape of whomever.

So we had clients that had abilities, we thought, to give funds.

I can't remember how it came about, but we got a quote "audience" in front of Muriel Kauffman.

We sat down in front of her, and she was very matter of fact and kind of said, "Okay, what do you guys need?

What are you up to?"

We kind of stumbled through this whole thing of what we were trying to do, raise money for AIDS, and we were doing this event and so forth in Kansas City, and we needed an honorary chair and if she would do that.

Because at that time, no one of name had put their name to an AIDS fundraiser at all.

So we thought if we could get her to do that, we would've crossed a great line.

I remember she just kind of leaned across the table and put her hands on it and kind of said, "Count me in."

I'm sorry.

That was extremely meaningful to us that she did that, and she gathered her troops, and that's partly why we were able to have a great success that year.

- You know, in all the time that I was there for 10 years, we never had anyone protest, but we did have protestors when we started putting up the new buildings.

There was a very active, two active neighborhood groups that didn't get along with each other right in covering the area where we built Cropsey.

Karl Cropsey was actually the highest ranking official to ever speak on behalf of gays in the military.

He carried Windex.

If I saw him coming, I would say, "Oh my gosh, you guys, get the windows clean.

He's on his way."

He scared me to death.

He was great.

He'd been a hero, and no one would ever have guessed that.

At that point, the population had transitioned to more behavioral health issues.

We needed to be able to provide stable housing that had options for people to actually get balanced and move on.

People had a future.

They actually had a future.

- There's a quote in the health department that reads, "Every disease has two causes, one biological, the other is political."

And at this point, it's not a matter of information.

It's a matter of people being willing to open their minds and open their hearts.

- I think the Cabaret success was the perfect storm.

People were dying.

People didn't understand AIDS.

We didn't have cell phones, we didn't have Grindr, and that was our home.

Everybody knew somebody who had AIDS.

I think the only thing that I want to stress to people who weren't around during the Cabaret days is what we did.

Not what we did, what the entertainers did.

It really is 100% the entertainers and the people who believed in the entertainers and wrote those checks.

That was the Cabaret.

(soft music) - We couldn't stop the horrible devastation of the disease, but we could help ease the suffering and pain and the loneliness caused by it.

I think that on the whole, Kansas City did a fairly good job of stepping up and making a difference.

Sometimes we were slower to respond than we should have been, but I think that we did a very good job of responding to the AIDS crisis.

- I remember coming out of the Cabaret and having a brick thrown at me by a car passing by and screaming, "Fags."

Well, that's really easy for somebody to just go, "I'm not doing this anymore," but we don't do that.

We fight.

I think that's what made the Cabaret Beer Bus, is that we were fighting for our lives.

(gentle music) This is Polly Holiday,and she found out about the show, the Sunday Beer Bust.

She autographed this and sent it to me and it says, "To Flo from the real thing, Polly Holiday."

She put this, it came just like this.

She just didn't slap it in an envelope.

She actually did all this for me, so this is probably one of my prized possessions.

(gentle music) - It is very unfortunate that HIV has been characterized as predominantly affecting the gay population since the beginning.

The numbers of new infections are still quite high in men who have sex with men, with about 60% of new infections in the Kansas City area.

But we are seeing striking differences in new infections as it relates to persons of color and heterosexual women as well.

So in Kansas City, during 2022, new infections of African Americans were five times the rate of new infections of white-identifying persons, and new infections in Latino populations were three times higher than that of white.

So we have the tools to end the epidemic right now, but getting the information to populations that we're seeing new infection rates is a priority and still a need.

(gentle music continues) (gentle music continues) (gentle music) - I had gone to the hospital for anti-anxiety medication 'cause I was having a panic attack at work.

And they offered me testing and I said, sure.

I left, I got my anti-anxiety medication, I went back to work, and the health department was calling me for a full week.

They were leaving messages and they were just like, "Hey, we need to talk to you.

We need to talk to you.

You need to go back to the hospital that you were at."

And I'm just like, "I don't have time to actually leave my job and continue going back and forth to the doctor's office."

When I eventually talked to the lady on the phone, she said, "Can I just tell you your results over the phone?"

I'm like, "Yeah."

And she said, "Well, you tested positive."

Complete state of shock.

- In the Kansas City area, we have more than 5,800 people living with HIV, and over 200 new infections every year that are documented here.

Most importantly, CDC estimates that 13% of people living with HIV are not aware of their status because they've not yet been tested.

- I know people who would rather not know, and if they do know, they would rather act like they have no idea that it's actually happening.

- In 2016, the CDC released a statistic that said that unless something changes, one out of every two black men in this country of any age who has sex with men, regardless of how they identify, they will contract HIV in their lifetime.

I think it's easy to hear things like, "Oh, HIV is no longer a death sentence," and just stop your learning, your education there.

I do agree that HIV is no longer a death sentence if you know your status, (laughs) if you're able to access the care that you need, and if you're able to be adherent to that care.

Yes, then HIV is a longer death sentence, but I've lost too many friends to know otherwise.

- I didn't feel good one day, so I went into the free clinic.

They didn't even let me leave the office.

They put me in a car, drove him to the hospital, and that's where I stayed.

They said I wasn't going anywhere.

The doctor came in and he goes, "Well, we did some tests.

You're HIV positive, but if you take the medicines that we prescribe you're gonna outlive us."

The shock of it all.

I didn't know to cry, to be mad, to scream.

I didn't know what to do.

- Today, I am primarily doing HIV care.

I used to have a more full practice.

Right now, I see patients who range from seven to 87 and it's a broad range of people who have acquired HIV, either 30 years ago or three weeks ago.

(bell rings) (gentle music) - Well, I grew up in a little town in the middle of Kansas.

I thought I was the only gay person in the world.

I was with somebody who had a lot more pronounced symptoms, and he started going to see Dr. Lee, and I went with him and we both got tested.

(gentle music continues) Well, I knew lots of people that had AIDS already.

I was involved with ACT UP, so it was just a confirmation of something that I suspected already.

- I went to KU for undergraduate, so moved to Lawrence, initially majored in biology, wasn't really sure what I wanted to do, and then finally ended up majoring in both microbiology and cell biologies.

And I was ready to leave.

I flew to Boston.

I didn't know anyone there.

And this was 1999 or 2000, so I got a newspaper, and I looked for jobs in the newspaper, circling my jobs in the newspaper and calling these people, and amazingly, I got an interview with the Center for Viral Pathogenesis at Harvard Medical School.

This is one of the premier HIV vaccine laboratories in the country.

They've been working on vaccine development since the late '80s.

But I was excited to be a laboratory scientist and learn and try to make an HIV vaccine.

- The difference between HIV and AIDS is that HIV positive means that a person has been exposed to and acquired the virus that causes HIV, the human immunodeficiency virus.

That virus is in their body.

One of the target cells in the human body is called a CD4 or T4 or T helper lymphocyte.

Those white blood cells are attacked by HIV.

So those lymphocytes, normally people have around 2000.

- I think at one time I had a T cell count of four.

- We would like it to be over 500, but it did come up to 200.

But we mostly are running right at about 200, 250.

- I'm really surprised that I'm still alive now, and I think Dr. Lee is, too, 'cause I was pretty bad a couple times.

- My CD4 count was 11.

I had 11 white healthy blood cells in my body.

I let things go that they shouldn't let go.

When they tell you to take your medications, take your medications.

I fell off and I got sick.

You know, my diabetes, that all was brought on by the HIV.

I lost my teeth due to an early cocktail.

I've lost my eyesight to a point, because of just the ramifications of having HIV.

- My knees and legs are real stiff and sore, and part of that is the hairline fractures in my tibia and fibias.

It makes me like moving my, bending my knees, getting around really difficult.

I had bacterial, viral and fungal pneumonia all at the same time.

- A whole litany of infections become problematic for people with low T cells because their immune function is so damaged, they can no longer fight those off.

So what the CDC said was, if a person has HIV, they are classified as HIV positive.

Once their CD4 count drops below 200, or if they develop one of the opportunistic infections that are included on the list of AIDS-related diseases, then they have what's called AIDS.

- So there's many reasons why it's been so challenging to have an effective HIV vaccine.

(bright music) One of the reasons is that it infects your immune system cells, so the cells that are called T cells, those are the cells that HIV infects.

When you replicate from DNA to RNA going forwards, like most organisms do, there are little fact-checking molecules that make sure that every single amino acid sequence is matched up perfectly.

But since HIV is a retrovirus, it's making much more mistakes than most other bacteria and viruses because it doesn't have those proofreading mechanisms.

Another issue is that it's been difficult to identify what we call correlates of immunity, because there is no known existing person who has a natural immune response to completely rid of the virus.

So you cannot study what is successful in a person being immune to that type of bacteria virus, which is very uncommon.

And then finally, HIV also hides extremely well in all different types of cells in your body.

So even if you're taking your medication as directed and are living with HIV, there is latent virus that is kind of asleep, especially in the deep, deep cells of your digestive system, you know, which is miles and miles long.

So if you were ever to stop taking your meds, virus can really reactivate from these very hidden areas in your body.

Even when we have that vaccine, I don't believe that the uptake of the vaccine, given our current state of vaccine hesitancy in the United States and globally, will be as effective as the current biomedical prevention.

- Are we gonna get there with a vaccine?

No, we're not gonna be able to get there with a vaccine alone.

We also need to be using treatment.

The vaccine will help, just like the COVID vaccine helped us get through that initial phase of COVID.

I think that in some parts of the world, the vaccine is gonna be more important than in other parts of the world.

But treatment has to go along with that.

- With PrEP, pre-exposure prophylaxis being over 99% effective if taken correctly.

Knowing that PEP, which is post-exposure prophylaxis, you can take medication within 72 hours after a possible exposure, you can go to the pharmacy or your doctor and get medication to protect yourself, and that reduces infection of more than 80% of contracting HIV after the fact.

- Where I lacked in education was about preventative measures.

There was never a conversation about things like PrEP or PEP.

I knew what getting tested was, but that's about it.

And I knew about condoms, but as far as PrEP and PEP are concerned, I didn't know what those things were until I was in my early 20s.

- However, I think that it's not just that it's about PrEP, although that's part of it.

I think that it's the context in which we are providing that care that is part of the problem, and so I knew that when I wanted to get on PrEP and I was working at an FQHCA, a federally qualified health center at the time, and it took me six weeks to get an appointment.

So that was already one problem, so I thought, you know what?

I gotten a flyer from the Wyandot County Health Department that they were starting a new PrEP clinic.

I thought, well, I'll go over there and give it a shot.

45 bucks, okay.

Might be cost prohibitive for some, but I was in a position to do it.

And so in my phone kept notes, so everything they had me do, I put it in my phone.

There were 19 different steps.

go over here, go do this, fill this out, go back over there, go to the lab, do the...

It was too much.

I think that access is a problem, has been a problem.

I think that cost has been a problem.

People focus on, "Well, we can get the medication free for free."

Well, that's fine, but I gotta do quarterly labs, and quarterly provider visits.

who's paying for that?

But I think a lot of it has to do with stigma around PrEP being for those who are considered, well, you know, you're a hoe.

Why would you need it?

And by the way, that's not just community.

There are actual providers in this community, in this city who have said, "Nope, go over to BlaqOut," go to Truman KC Care, wherever.

We're not gonna do that for you because you know, you should just not be having that much sex."

- So there were three things that were incredibly important to me prior to merging with Vivent when I was CEO for GSP and Thrive.

(no audio) And they're kind key pillars for me in terms of how I envision the Vivent Health Kansas City is radical hospitality, everybody needs to feel like they're welcome.

Everybody needs to feel like they're safe.

And the third thing is that they belong.

Because I've heard too many stories over these last many years that I've been involved in the work that people just feel like, well, I don't belong there.

You know, they judge me for who I am.

You know, they may treat me differently because not only am I HIV positive, but I'm a queer person and I might be black or brown.

- What really sort of focused my attention was the loss of three different friends of my own to AIDS-related complications at a time when medication was readily available, care and support were readily available, but their own inability to reconcile their identities with themselves, their faith and their status and their sexuality, all of that was too much, and so the attitude among at least two of those three friends was, if it's my time, it's my time.

And I think that part of what has happened is that, you know, people approach HIV or their healthcare in the same way they approach much of life, and so they're getting the same lessons, or same messages anyway, that they get about other aspects of life.

And it does seem like pop a pill, pop a pill, pop a pill.

But when you don't think about the stigma that you have to deal with, when you don't think about the fact that you may have to sit with yourself with a new diagnosis of HIV and say, "Will anybody love me?

Will I be able to find a relationship?

What about housing?

What will my family do?

You know, what about talking to people and dating?"

Like all those things are real factors that will change your life, and I think it's easy to assume that I can just take a pill and go on with my life, but there are other aspects to it.

(gentle music) - I was so angry.

I was mad at everything and everybody from God down to the soil.

I was diagnosed in another state that didn't have laws on manslaughter, and my goal was to go out and kill everybody that I thought was killing me.

I went to call a friend of mine.

So I said, "I'm HIV positive."

And she told me, "Well, you're a drug-addicted prostitute who's living on the streets.

What did you expect?"

Come to find out it was my husband.

And that was all I got for compassion.

And so I've made it a passionate of mine to be compassionate to people with this disease, because if they don't fit the, quote unquote, norm, they're gonna feel out there and freakish, and I just want people to know that they're not freaks.

You're not a freak because you have this disease.

- I had no one to be angry at other than myself.

I was more so disappointed because of how irresponsible I feel like I was.

In the beginning, personally, I took it hard, and I didn't really want to be involved with people.

I saw myself a little bit as unlovable, because I felt this dirtiness about myself, and that is because of what stigmatization will do, right?

Even within the black community it's like, it's almost like don't ask, don't tell, you know?

- I Started BlaqOut because there was not only a need, but because as a community we had begun to come together and coalesce around a vision of change for ourselves as Black, queer folk in this community.

I always felt like I had work to do in this field.

(gentle music) We wanted someplace that was in Midtown, someplace that would allow us the opportunity to grow, and it feels like it's an extension of this space.

And we acquired this space for one simple reason.

We wanna reinvent the way healthcare is delivered to the Black LGBT community, and the BlaqBox is set to become the new home for LGBTQ healthcare here in Kansas City.

And so we just decided this space, the BlaqBox as we call it, will remain a space of gathering, a space of community.

We do a lot of events and trainings and programming there, but ultimately for our members, it's like a coworking space.

They can come in and hotel a desk for a couple hours or meet friends there or whatever.

Maybe they have an appointment with a provider downstairs.

(gentle music continues) There will be three exam rooms, our pharmacy will be on site, lab will be on site, space for mental health, and all that.

So the plan is to utilize that space as a flagship, as a model of the kind of care that we wanna provide, and as, frankly, an observation space for others who are looking to our model to see how they might replicate it.

(gentle music continues) I think too often in healthcare, we have a very transactional approach to working with community members.

But when you're talking about a population of people who are often very marginalized in every other aspect of their lives and every place they go, it's important that they feel they have more than just a transaction, but a relationship.

And I take that very, very seriously.

So at BlaqOut, they're not patients, they're not clients, they're members.

They have ownership in the vision, ownership in the work, so we wanna make sure that we're getting their feedback, and make sure that they feel like this is really for them.

(gentle music continues) This is ours, and I've got a hefty mortgage to pay every month to prove it.

(laughs) So that for me, although I've heard from many community members, and I see it on people's faces like this is ours, and it feels like home, that's all we ever really wanted.

I know that they see that they have a place in the community, finally.

(gentle music continues) - I used to work at Vivent Health, and I had a couple preliminary positives.

One in particular, I'll never forget, was an 18-year-old.

(gentle music continues) It was his first time getting tested, ever.

And we're sitting and we're talking, and it's a great conversation, and he's telling me about his life.

You know, we're just waiting for the results to come back, and it came back preliminary positive, and to have to break that news to an 18-year-old is not the easiest thing, but I let him know he's looking at somebody who is living with HIV.

It hasn't stopped me from being creative.

It hasn't stopped me from having any fun.

It hasn't stopped me from relationships or anything like that.

Just having those conversations and letting him know in that moment that this doesn't define him or define his life.

(gentle music continues) - I mean, the weird hope, I don't know what the exact Webster's dictionary of it, but it gives you something to look forward to, and I have that today.

(gentle music continues) You know, I look forward to moving out.

I look forward to staying here and doing some volunteer work.

Look forward to what I do out of here on my weekly outings.

I look forward to growing all the healthy stuff that I never got to experience, because I was married with this man, trying to raise kids, and then he dies, and the disease took him out.

(gentle music continues) - Half my friends from the '90s are gone now.

There is a little bit of guilt, survival's guilt.

There's a lot of relief, too, that I made it.

There's, you know, a handful of other people that I know from those days that were in similar situations.

You know, they either lost people to HIV, or they were HIV positive themselves.

(gentle music) And going through the same kinds of struggles.

- Well, HIV, it hasn't gone away, and I think any of us that think it's not gonna enter their world, to me, you're naive and arrogant, if you think that.

You're not that many degrees of separation away from somebody that has HIV.

The thing that I think that hasn't changed is there's still a lot of ignorance and a lot of stigma.

- Everyone who is infected needs to be treated, and that is going to be a tough one, because before the treatment comes the diagnosis.

So getting people diagnosed and on treatment is critical.

More than 40 years later, we seem to know almost everything about this virus, except we don't have an effective vaccine yet.

I think one of the most amazing developments that we have are these biomedical prevention tools that are available today.

Knowing that there are preventative medications that you can take, whether it's a daily pill, or a monthly injection to protect yourself from getting HIV has been a total game changer.

On the other hand, the other biomedical prevention we have is what we refer to as U=U, or undetectable means untransmittable.

So the science has shown that if a person is taking their HIV medication as directed to the point where HIV is not detectable in their blood, that there is zero risk of passing on the virus sexually to another partner.

- The cost of treatment is so high that we still have places in the world where people cannot get treatment, and we are gonna have to treat the whole world.

You cannot, any longer, treat people in the United States and say, "That's all we have to do."

We are an interconnected world.

And so we have to treat everyone in the world with HIV in order to get to zero.

(gentle music) - I think a lot of times people in the healthcare field, and specifically when it comes to HIV, they have this attitude that, don't you know how dangerous this is?

Or don't you know how this could, you know, how life-changing this could be for you?

So on and so forth.

And they expect that people are supposed to live their lives with that at the forefront of their minds, but I submit to you that when you're worried about just living day-to-day, when you're worried about housing or employment or relationships or family or whatever, that's not the forefront of your mind, and so I don't ever try to come from a fear-based perspective with people.

It's always about empowerment, owning your own life, but I think that the federal government, and I think that those who are part of the broader healthcare infrastructure have just not really done the job of examining themselves and examining their processes and saying, you know what?

We really don't have the relationships at the community level that we thought we had or that we need to have to really bring about long-term, impactful, sustainable change.

And so as long as there's this approach to what I think of as a flash in the pan, versus looking at and supporting the models that really stand the best chance at a lasting impact, we are not going to see the elimination or eradication of HIV in this country, not in our lifetimes, period.

(gentle music continues) - So my goal is to leave here in a few months, and before I go, I plan on redoing this ribbon.

This ribbon is kind of like a staple here at Hope Care Center.

As you can see, it's a little shabby right now.

My goal before I leave is to rerock it and repaint it so that visitors can come and enjoy it, so that the residents can come and enjoy it, and it's just kind of my gift to the facility for doing so much and being so much to me, so I'm gonna put on my best paintin' cap, and my best tennis shoes, and come out here and move rock around and paint this guy before I go.

(gentle music) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music continues)