(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)