- [Voiceover] Flatland is brought to you in part through the generous support of AARP, the Health Forward Foundation, and RSM.

- Hi, I'm D. Rashaan Gilmore.

Welcome to Flatland, where we take a look into various perspectives on issues that are affecting folks in our region.

And for this episode we'll be talking about how HIV and AIDS continues to impact the lives of Kansas Citians.

(funky music) I will never forget the day that my grandmother and my aunt picked me up from high school track practice.

And as was often the privilege, I got to go to McDonald's after school and get something to eat.

And as we were in the drive through, I'm in the front seat with my grandmother.

My aunt chose to sit in the back seat, and we were sitting in the drive through, and she burst into tears, and my grandmother said "My goodness, Kathy, what's the matter?

What's the problem?"

And my aunt Kathy, my mom's older sister replied, "Mom, Larry died today."

Larry was my aunt's best friend, and Larry was living with HIV, and he died of AIDS related complications, when his immune system could no longer fight off the virus, and the opportunistic infection that took him out.

Something about that experience shaped how I am approaching my work today, and the fact that I'm even doing the work that I do, not just here at Flatland, but at Blackout, the organization that I founded to help advance healthcare outcomes for the Black LGBT community.

And you cannot talk about healthcare outcomes for the Black LGBT community without talking about the role that HIV AIDS has played.

And for this episode of Flatland, we'll be featuring a piece from a local documentary filmmaker and friend, Sandy Woodson, who spoke to other leaders working to mend the healthcare inequities that have been affecting those living with HIV and AIDS in our community for a very long time.

(soft music) - I want people to know that people living with HIV can live long and healthy lives.

- Its definitely not a death sentence, not like how it used to be.

- But at the end of the day, we all going to die.

The information that I understand is that I probably won't die of AIDS or HIV, but I wouldn't wish this journey on anyone.

And I believe to this day that if I would have known that this was a human disease, not a gay white male disease, maybe life would be different.

(soft music) I was diagnosed in 1995, June the 30th, at 11:30.

And she was just crying and she said "I'm trying to pull myself together."

She said, "I am a new doctor.

This is my first time having to tell someone about having HIV."

I wanted her to know, "You got the wrong person's blood."

And I told her, I said, "Because black women do not get HIV."

And she said, "Sweetheart, I'm sorry that you don't have the correct information.

I will get you all the resources, and you can see a doctor that knows about it."

But before I left that office, I will never forget her words telling me, "Don't tell a soul for your own safety and protection."

- I don't want to make it seem like how most people try to make it seem, like, you know, it's nothing's changed.

Like I'm still, no, I deal with depression.

I get depressed a lot.

Anxiety, I might see a bump that's just weird, and think it has something to do, something's going wrong.

On my 19th birthday, I went and got tested, and everything came back fine, and then the lady there was telling me, you know "Come back in three months, even though it come back saying that you're negative."

That she said that "Sometimes it takes a minute if you do have it for it to show up in the system."

And then I went back and got tested with a group of friends and everybody came back negative except for me.

Yeah.

So I mean that, which is crazy talking about it, cause I didn't realize how much that's like, I wouldn't say it's a trigger, it was kind of like a dang, 'cause my friends back then were a lot more promiscuous than me.

So for me to have that situation in front of them, it was kind of like a lot.

The lady told me, 'The only time you need to disclose is when you're dating, or you know it's a hookup or something."

As much as I would love for that to be true, once you tell someone, that then becomes their knowledge.

So they can literally go tell everybody.

That happened to me.

So after that, I literally went home that night.

I got on Facebook, and wrote a long note basically just letting 'em know that I am positive, and how I felt about it and all that.

Cause for me it was more so about jumping in front of that bus.

before it just became like people saying, "Oh he's trying to hide it."

I'd rather just let everybody know before rumors and everything started going around.

- It's 28 years for me.

And I can remember when she told me, she started me out being this stigma, but for the best reasons, I get it, because of what was going on back then.

Women was getting killed back then, because somebody thought they gave them HIV.

And so that's why she said to me, "For your own safety and protection."

- I have an amazing family, an amazing support group, but nobody really sits down with you and tells you, "No, you have to have safe sex, you have to wear condoms, you have to, you know, if you're sexually active, it might be a good decision for you to start prep.

And that's totally okay."

And I think that more people should.

More young people engaging in sex should.

- Information is powerful.

But you gotta love yourself enough to want to know.

So many people do not want know.

And so they still not getting tested.

- I feel like most are scared to go get tested, 'cause when they don't wanna hear it, they don't want to then be in the room with other people that they know in the community.

Having other people that they may know in their business.

- Always know your status.

And before engaging in sexual stuff with a partner, it's important to ask their status as well.

And if you both don't know your status, it might be a good thing, you know, before you engage in that stuff to both go get tested and to know your status.

I want people to know that if you're undetectable it means you're untransmittable.

And people living with HIV that take their medication as prescribed to them, if they hold their undetectable status for six months, they no longer can transfer HIV to a partner.

I also want people to know that people with HIV, it can be your sister, it can be your cousin, it can be your aunt, it can be your uncle, it can be your best friend, it can be anyone in your life.

So get educated before you talk out of ignorance, because you never know somebody that is ashamed to have HIV and you're saying ignorant things, how it could affect them.

You don't know.

- My thoughts, and understanding, and believing is that living with HIV has not taken anything away from me in order to do my journey.

But I know it's played a major part.

- All right, welcome back for the discussion portion of today's program.

And I'd like to welcome to the studio Sandy Woodson, who is not only my friend and colleague, but a producer of the documentary AIDS and KC, the Early Days.

Tanika Sullivan, who's a peer educator with KC Care here in Kansas City.

Dr. Ume Abbas with University Health and Truman Medical Center.

And Anjie Keyes, who is the creator of the support group Positively Rare and Emerge.

And so 2016, the Centers for Disease Control said that unless something changes fully, half, one out of every two black men who has sex with men, regardless of how they identify, will contract HIV in their lifetimes.

So one out of every two.

And then for Latino men, it's one out of every four.

And for black women that number is as high as one in 22.

And that is really, you know, sort of a scary thing to consider because even in many parts of the world that have been ravaged by HIV AIDS, we don't see those kinds of numbers.

So I wanna start with you Tanika, and ask you about the work that you're doing at KC Care and how you came to it as a peer educator, and what a peer educator actually does.

- I came to with just coming out myself, wanting to speak to my community and make them more aware.

So I thought about volunteering.

I started with my my linkage to care.

That was kind of like, my case manager kind of asked her who was who she was through.

And that kind of linked me to the volunteer program that they do.

- Take us back, if you can to the day that you were given your diagnosis that you were living with HIV.

What was that moment?

What happened?

What was it like?

- Scary.

Very scary.

I think back then I was my, I like to say my own statistic from what I have heard.

So that kind of, yeah, put me in a shell, kind of shut down.

- Was it that you didn't think it would be you?

Or did you have a hard time believing it?

- Believing it.

Accepting it.

Yeah.

Denial.

All that.

Yeah, all that.

- Anjie, you kind of have a lot of history with this virus, because you've been living with your diagnosis for well longer than Tanika, I believe it was 2018 when you got your diagnosis.

Does your experience, Anjie echo that?

Is it similar to that of Tanika, or was yours very different?

- The doctor that gave me my diagnosis was just primary, and she had never gave anyone information.

And I'm sitting there thinking after she tells me what I have is that "How dare you."

I, no indication of this happening to me.

And they needed to rerun the test.

And she took the time in between tears to tell me that it was no need.

- What was the moment of acceptance?

Do you recall, Anjie, when you had that click where it's like, "Okay, I gotta deal with this and I can."

- Yes.

When I realized by seeing my mentor on the news making a disclosure to her family, and she was the only person that I had seen that looked like me.

- What about for you, Tanika?

- I think for me it was probably a year later, just being quiet and not myself.

My family and friends all around me noticed the change.

- So you carried this for a year?

You didn't share this with family and friends?

- Oh no.

Oh no.

- What, I'm curious, what was behind that for you?

Was it shame or stigma?

- Shame.

Stigma.

Them accepting, still accepting me, wanting to be around me.

All that came with that.

And I think for me it was my kids.

It was my kids for me, you know, 'cause you still gotta live life.

I'm big on lead by example.

I'm their example, they're seeing me.

- I'm always quick to say to people, HIV is no longer a death sentence, if you know your status and in and you're in care.

And so I'm just quite curious, if you could provide a little bit of a level set for us and tell us some of the advances that we have seen in HIV care, and treatment, and medications that make it not be the death sentence that it was in the early eighties.

And we'll talk to Sandy about that in a short time.

- The first reports of HIV AIDS were in 1981 coming out of California and New York.

And the average lifespan at the time of those who were diagnosed was six to 12 months, because they were diagnosed ready towards advanced disease.

Fast forward today, a person who acquires HIV in their twenties can expect to live a normal lifespan.

- Do you find that patients, when they first hear, learn of their diagnosis, that they have an experience or reaction similar to what Anjie and Tanika experienced?

Or is there more acceptance do you think now?

Or is it pretty much the same?

- So, you know, it varies, but for a lot of patients the initial diagnosis still comes as a surprise to many of them, because even though we've made a lot of advances, we still, you know, diagnose a lot of people with HIV in the United States at late stages.

So it's not that we are catching them immediately after they're infected.

So the average lifespan is about 10 years and studies... - If they're in a later stage of their diagnosis.

- No, from the time they acquire infection to their death, the average lifespan is 10 years.

In the 1980s when people were diagnosed, because it was new and it was not on the radar, the average lifespan after we diagnosed them was just six to 12 months, because they came to us very, very, very late.

Now we have narrowed that gap, but not quite.

The major advances we've made are better and better medications, antiretrovirals, for both treatment as well as prevention of HIV.

And that has been phenomenal.

So initially there was just one medication and then we had two, 3TC came about, and then we realized even two are not enough, and we need a cocktail of at least three.

And then the first protease inhibitor came about I believe in 1995.

And after that, that was the new era of antiretroviral therapy in 1996 onwards.

It can be acquired by three major routes, sexually, mother to child, and by bloodborne transmission.

And once it enters the body, it integrates into the nucleus of the certain types of cells predominantly the lymphocyte cells which are necessary components of the immune system.

And it preferentially destroys cells that we call CD4 cells.

- And those are our fighter cells.

- Yes.

And the virus is destroying these cells, and it's destroying it all over the body.

And that is why later on these patients start getting infections more frequently, and of the type of infections that we normally may not see in people who are immune systems are intact.

- But it really is those opportunistic infections that come in like pneumonia, after you've got a really suppressed immune system and the body just can't fight it off.

Sandy, you're working on this beautiful documentary about the early days in Kansas City.

With what you've heard so far from our guests, does any of this ring a bell with what you've uncovered in the course of producing the documentary?

- You know what's interesting is so far we haven't been focusing on women, because I'm only doing like the first five years when it hit Kansas City.

And so we aren't talking so much about women, and I really, but I interviewed Anjie for my segment for this show.

And one of the things I thought was so interesting is her doctor told her initially, "Do not tell anyone that you have this.

I'm telling you this for your own protection."

And Anjie mentioned that women were being killed, because at that time, even if it was just a suggestion that they may have infected someone, and I thought, "well no wonder there's a stigma, if in the very very beginning people were having to say Please do not tell anyone, because this will put you in danger."

- Has there been a change in terms of how people are received or treated based on your experiences in particular?

Now I have given many people, unfortunately, as an HIV tester and you know, I've had to give people their preliminary diagnosis.

And I'm just wondering, do you both feel that people's response to hearing that news today differs from what your experience was?

Or do you feel like it's still pretty much the same?

- I really don't see it being any different when it's related to people, my peers, that still don't have the freedom.

I lost my best friend because she didn't have the freedom to talk about anything she had going on in her life.

- I don't, I think it's still there too.

- What do you think is underlying, undergirding that?

Like why?

Why?

Is it because it's sexually transmitted in very many cases?

- Yeah, it's sexually transmitted.

- So the perception is you're dirty, bad.

- The perception behind it.

Yep, exactly.

Yep.

Yeah, yeah.

You're dirty, you're not clean, all that.

But I think what helps is, like Anjie said, the freedom and the support.

Having a good support group that make you feel comfortable to have that freedom to speak.

That's important.

- Well, you know, as we well know, not every person living with HIV past or present has had equal support to take care of themselves, and get the support that they need.

I would be very interested to know what are the lessons from a population health perspective, Dr. Abbas, that we should be sort of learning from and implementing that will help us to deal with some of these issues around stigma and shame?

Because I think what Sandy said is so profound, because even though it's your story, Anjie, it just strikes me as so odd that you have a provider who was really promulgating the shame in a way, but was doing it in a way it sounds like, trying to protect you.

So what have we learned, or have we learned enough to be able to change how we are approaching this from a public health perspective?

- As our guests have shared, there's still a lot of stigma and unfortunately the stigma is also not uniform.

There's more stigma in certain geographic areas of the United States, particularly the south.

- The south where they're getting pummeled.

Yes.

- Yes.

So it's not just one thing, it's also linked with socioeconomic situation, structural barriers, and then you know, cultural issues.

Science can help reduce stigma.

Trying to dispel some of the myths and misinformation is very helpful.

And trying to also address the issues at the source from wherever this is coming from.

The community leaders and champions can do a lot.

People living with HIV, if they can demonstrate, you know, that their lives are pretty much normal in every other aspect, other than the fact that they have to take a medication.

They're pretty much vital members of the society, and in no other way different from the others.

- That's such a beautiful and profound statement that I think so often gets lost.

And I think, you know, much of the crisis came from inaction on the part of elected leaders.

I mean, we literally had a president of the United States who refused to even say the word AIDS, much less put resources and money behind trying to treat and care for folks.

So I'm just wondering, you know, in the present day, Sandy, if you were sitting across the table from some high echelon political leader, what do you say?

- Well, I was talking with Tanika about this earlier.

The cost of medication is ridiculous and the... - For care and prevention, I will add.

- Yes.

And that's what I've been told with people I've spoken to.

And also you have to worry about if I reach a certain economic level, is that gonna impact my care?

And there was a young man I spoke with who was telling me that he had just gotten a job with insurance and before everything was taken care of, but now that he has this job with insurance, out of a $3,000 a month bill, they didn't cover all of it.

He still had to cover $400 a month.

And I just think that's crazy that when we're trying to get this down to zero, you know, you're not helping anybody by making the medication so expensive.

- Dr. Abbas mentioned prevention and so they're, in 2012, the CDC and the FDA approved a medication called prep, pre-exposure prophylaxis.

It's a once a day pill that you take to prevent contraction of HIV, or a bi-monthly injection shot that was recently improved.

But the challenge is, and I know this from my own experience personally, but also leading Blackout, we don't charge for anything, whether it's labs, whether it's copays, whether it's provider visits, medication, none of that.

Because we know how cost prohibitive it is.

The medication that I take each month for prep is $2,000 a month.

And then imagine if you've gotta pay for labs, because the CDC recommends quarterly labs, right, Dr. Abbas?

So that comes at a cost.

You've gotta see the provider, that comes at a cost.

So what are people supposed to do?

To your point, if we're trying to get to zero, which is the stated ambition of public health in this country, we're a long way off if people don't have the access that they need.

Go ahead, Tanika.

- And like I was telling her to bridge that gap, you're working two to three jobs, you know, just so you can... - [D. Rashaan] To live.

- Yeah, to cover expenses that you're needing yeah, for medication, yeah.

- There's always a public health response, a legislative response.

But I think where we are finding ourselves is really at the blade of the grassroots.

And that is those who have profile and position really speaking up loudly, and really borrowing from the early days of the movement.

Because there was a time when folks were breaking into City Hall here in Kansas City, and hurling a banner, 30 foot banner over the side of the building saying, "Hey, pay attention.

People are dying from HIV AIDS", right?

And so I think there are people who are giving a lot of time, energy, and effort, I'm one of those people, to pushing back and saying we gotta have, for example, a national prep initiative for here.

Here's the crazy thing.

The CDC says that about 1.2 million people in this country are indicated as being a good candidate for prep.

Again, that's the once a day pill that prevents contraction of HIV.

But do you know how many people we have in this country who are actually on that medication?

Barely over a hundred thousand Close to 200 maybe, depending on how we're counting.

But I'm just saying that we are a long way off from where we need to be.

And again, the access routes are not there.

So it just raises the question for me, what is it that's missing?

Who is not getting it?

We're sitting around having this friendly conversation among colleagues, peers, and friends.

But I'm wondering who should be at the table.

- Can I, So the other person I interviewed for my segment was Quintez.

And Quintez was talking about the same thing you were where he was like, "We need to have this on TikTok, we need to have this with prominent people."

But I think part of the issue, I met a couple of men that I met recently were diagnosed at 18 or 19.

When I was doing this research for my project, these people were telling me about going into high schools and talking about condoms, and talking about how you get infected, and all these things.

And I'm like, "Are you kidding me?

You mean high schools let you come in and talk about this?"

That's part of the problem.

I don't think we're getting enough education to people that are younger.

- I am so very, very thankful to you, Tanika for sharing your personal story, and also to you, Anjie, for sharing your personal story, because it takes a lot to do that, especially in the face of some of the stigma and shame that we've talked about here today.

And that's where we wrap up this conversation for this episode of Flatland.

Thank you for being our guests today.

Sandy Woodson, producer of the documentary AIDS in KC, the Early Days.

Tanika Sullivan, a peer educator at KC Care.

Dr. Ume Abbas, infectious disease physician at University Health, Truman Medical Center.

and Anjie Keyes, creator of the support group, Positively Rare and Emerge.

You can find additional reporting on HIV and AIDS in Kansas city @flatlandkc.org.

And be sure to stick around after this for Sandy Woodson's documentary AIDS in KC, The Early Days.

Very proud of that project, Sandy.

This has been Flatland.

I'm D. Rashaan Gilmore.

And as always, thank you for the pleasure of your time.

- [Voiceover] Flatland is brought to you in part through the generous support of AARP, the Health Forward Foundation, and RSM.

(funky music)