- Coming up on "American Black Journal," a landmark medical trial leads to a new treatment option for sickle cell disease.

We're gonna examine the pros and cons of this new genetic therapy.

Plus, we'll take you to a camp that helps returning citizens adjust to life on the outside.

And we'll have a performance by Detroit techno artist, Drummer B.

Don't go away.

"American Black Journal" starts right now.

- [Narrator Of Commercial] From Delta Faucets to Behr Paint, Masco Corporation is proud to deliver products that enhance the way consumers all over the world experience and enjoy their living spaces.

Masco, serving Michigan communities since 1929.

Support also provided by the Cynthia and Edsel Ford Fund for Journalism at Detroit Public TV.

- [Narrator Of Commercial] The DTE Foundation proudly supports 50 years of "American Black Journal" in covering African American history, culture, and politics.

The DTE Foundation and "American Black Journal," partners in presenting African-American perspectives about our communities and in our world.

- [Narrator Of Commercial] Also brought to you by Nissan Foundation and viewers like you.

Thank you.

(mid tempo jazz music) (mid tempo jazz music continues) - Welcome to "American Black Journal."

I'm Stephen Henderson.

More than 100,000 Americans, most of whom are Black, are living with sickle cell disease.

Now, there's a groundbreaking therapy that has been approved by the Food and Drug Administration to treat the debilitating pain that comes with this blood disorder.

It's the first time that gene editing is being used to improve a human illness.

Although the therapy is really exciting, there are some concerns over cost, accessibility, and the complexity of the treatment.

In order to help sort it out, I spoke with Dr. Melissa Creary, a social scientist and assistant professor in the University of Michigan School of Public Health.

She is also living with sickle cell herself.

So I am fascinated by this news and fascinated by the possibilities that it suggests.

Let's start with what this actually is and what effects it can have for people who struggle with sickle cell anemia.

- Sure.

Sickle cell disease is the most common inherited blood disorder.

And it impacts mostly those that are descendants of the African diaspora: Black Americans and Caribbeans.

And so it's a disease that is pretty debilitating.

And so when we're thinking about the potential for gene therapy and what it can do for the population, it's a really exciting day.

There are about 100,000 people living with sickle cell disease in the United States according to data.

It's an underestimate, we think.

And about 4,000 of them live in Michigan.

And more than half of that are in Detroit proper.

So when we're thinking about sickle cell and who it affects, we're thinking about, you know, a large population.

And in Michigan, 98% are Black.

- Yeah, yeah.

And this new treatment, you know, I'm not a physician or a scientist of any kind.

And I don't think most of our viewers necessarily are either.

So explain to me what this is and how it works and why it's such an advance in the way to treat this disease.

- Absolutely.

So in December, the FDA approved the clearance for two gene therapies to be released to market for people to begin to think about taking as part of their therapy and care for sickle cell disease.

And there are two types.

One is called lovo-cel; one is called exa-cel.

Both of these involve taking your own cells and kind of altering them.

They involve chemotherapy.

They involve long times at the hospital.

But that alteration means that either your own stem cells are re-engineered for one of them.

Or for the other one, it means that there's a disruption of the gene that causes the sickling.

And by disrupting that gene, you're allowing fetal hemoglobin which basically creates really healthy, buoyant red cells to be produced.

And both of these cases, both of these gene therapies, an assumed cure is happening because brand new cells are going to be generated.

Brand new healthy red blood cells will be generated.

- Yeah.

And this is my understanding, at least, is that this is a part of medical science that is being used to change the way we treat lots of different diseases.

This idea that essentially altering what's going on with your own stem cells or your own genes is the way to treat, or in some cases cure, diseases that have confounded us for a really long time.

- There's a lot of excitement, I think, in the scientific world about this for this very promise.

And I think that yes, we can think about the ways that this gets applied to many diseases.

For CRISPR in particular, the exa-cel that I mentioned earlier, this is the first... You know, they created this technology with sickle cell disease in mind to kind of pave the way for how other diseases will kind of follow suit.

And so there's this large idea about why and how we are going to address a particular population, a population that's been through a lot of medical neglect, and then give them this, you know, innovation I think as a way to kind of counteract that historical neglect that's been happening.

- Yeah, yeah.

You know, as someone who, of course, grew up in an African American community, I'm somewhat familiar with people who suffer from sickle cell.

And I absolutely know about the frustration with the medical establishment in coming up with ways to treat it just like for other health outcomes and issues for African Americans.

This has been, I think the right word is neglected.

- Absolutely.

I think that there's just been this long history of inequities that we have seen as it has played out in the sickle cell population which I think can be connected directly to institutional and structural racism that we find in all of our systems, particularly our healthcare system, and the way that we think about the production of knowledge, the way that we think about how science gets developed.

All these things are interconnected.

I am hopeful that this is just the start and a way forward of how we can actually pay attention to this historical neglect.

I am concerned about, you know, this kind of idea of a scientific piece of justice being applied to a population that needs a lot more attention when it comes to this historical neglect and this historical kind of experience with inequities.

We can't just say, here's a brand new innovation, and then expect everything else to kind of fall in place.

- Right, right.

And there are some other concerns around the use of this and, again, the distribution and the access, the access to it.

- Absolutely.

One of the main questions we have to ask ourselves is, you know, countered with this excitement we have about this therapy is: Who exactly is going to get access to this therapy?

In Michigan, there is only one site that's going to be offering it.

And that's the Children's Hospital, which is in Detroit.

And besides this physical location of accessibility, we also have to think about financial accessibility and this much larger kind of ecosystem of support that's needed.

These therapies are ranging between $1 and $3 million.

And we haven't yet figured out exactly who's going to pay for what.

- Yeah, yeah.

So I also wanna give you a chance to talk personally about this.

I understand you're someone who lives with sickle cell disease.

First, how do you feel like this might affect you?

But also, give us a sense of what it's like to live with this disease under the circumstances that we've had before this discovery?

- Yeah, I think it's hard to fully grasp what it's like.

And I will say that, you know, I'm a professor at the University of Michigan.

I'm living in a certain amount of privilege.

And despite all of that privilege, I'm exposed to pain almost every day.

And that is the main hallmark.

The symptomatic hallmark of sickle cell is pain.

So the idea that a therapy like this can take away pain really impacts your everyday positioning in life.

Everything that you do when you're living with sickle cell is measured on how much pain you might have access to, how much pain you might experience in a given situation.

And the idea of being untethered to that pain offers an amount of freedom that I really can't fully fathom.

I think there are a lot of people living with sickle cell that have a lot of serious complications: organ damage, are in the hospital frequently, are getting transfusions.

Some of that I have exposure to; some of that I don't.

And when I think about, again, this idea of kind of being unburdened, of not being, you know, tied to the healthcare system or a hospital and really being able to live a life that I think so many people take for granted.

- Yeah, yeah.

That word you used, unburdened, is so powerful in the context of so many parts of the African American experience.

I mean, that's just absolutely the right word, I think, to use to think about these kinds of, these kinds of innovations and progress.

A trauma camp in Northern Michigan is helping returning citizens cope with the stress of living on the outside after leaving prison.

The annual gathering brings together the formerly incarcerated with counselors in a retreat-like setting free of distractions.

"One Detroit" contributor, Mario Bueno, who served time himself in prison, and producer Bill Kubota attended the recent camp to see how it works.

- We are in Bellaire, Michigan.

It's the Shanty Creek Resort.

We're at this beautiful cabin here that's got like at least 15 or 16 beds.

- [Mario] Aaron Kinzel's creation, Trauma Camp.

The campers, ex-cons refreshing their minds while getting a taste of Northern hospitality.

- Yeah, yeah; so it's fresh smoked salmon from the Bear River up in Petoskey.

- Wow, two days old.

Two days ago, it was swimming in the river.

- It was swimming two days ago, yeah.

- [Mario] Trauma Camp in its fourth year.

This time, 15 campers came.

- I'm gonna go around and give you a piece of paper and a pen.

We're gonna have a couple of little things we're gonna work on.

- You really need to get people right in their head.

And the whole idea of incarceration of itself is extremely traumatic.

- [Mario] Kinzel, on faculty at the University of Michigan Dearborn specializing in Criminal Justice.

He's been in prison himself.

- A lot of my family were actively involved in criminal behavior.

Seeing violence in the home, watching violence in my community.

- [Mario] 18 years old, pulled over by police.

He panicked.

- And within seconds, I make the worst decision of my life.

I reached beneath my seat.

I pulled a firearm, I fire out the window.

- [Mario] Charged with attempted murder and other felonies, Kinzel served 10 years.

Education changed his life: college, grad school.

Now, much of his work: teaching, criminal justice advocacy, and helping returning citizens.

- It started out, I think, initially as this kind of brainchild of mine where I realized that some of my own issues when I came home from prison as a young man, I had a lot of unresolved trauma.

And honestly, I didn't even know what the hell trauma was until I started in grad school and started reading more about different literature that talks about these experiences that I had: for example, ACEs, adverse childhood experiences.

All this stuff that happened to me as a young child has really helped define, not necessarily cause but certainly led me down certain roads in which I made really negative choices going forward in my life, and then getting involved in the criminal justice system.

- Before your 18th birthday, did you often or very often feel that no one in your family loved you or thought you were important or special?

1 for yes, 0 for no.

- [Mario] Postdoctoral researcher, Meghan O'Neil, administers an ACEs test, a survey of adverse childhood experiences.

- These individuals may have experienced multiple traumas throughout their life.

Childhood trauma in particular is something that carries forth into adulthood for many.

Did a parent or other adult swear at you, insult you, put you down, or humiliate you in any way?

The Trauma Camp really tries to get at providing a supportive humanizing environment.

We appreciate and understand the challenges they've been through and that the system is inadequate as it stands to fully support reentry to housing, employment, to families.

Because there are gaps, right, in services.

- [Mario] The reading of the ACEs scorecards.

- Somebody with a 3?

- [Mario] A high number, higher risk for health problems, mental and physical.

- A 9?

- It was surprising to see my score was so high.

There was an interesting point that she brought up about like, just because you have a high ACEs score doesn't mean that you're destined for, you know, problems.

But it's that like resiliency gene that she was speaking of.

Some people have it, some people don't.

And I think that's what makes the difference.

- I wanna do things a little bit differently to where we work with people holistically instead of this cookie-cutter approach with reentry.

"Well, here's your basic stuff.

"See you later."

I wanted to really work with the individual and get them, you know, free of anxiety, access clinical health services, really de-stigmatize mental health.

- A lot of the negative experiences that we encounter like in the carceral state are, you know, they're difficult to even think about.

So coming together in a safe space like this is really beneficial.

Because you find out like, wow, I'm not alone.

Like somebody else went through that and they're still standing.

I wound up coming home from the military and, you know, wasn't really in my right mind when I got home.

I was suffering a lot from post-traumatic stress and yeah, I lost my temper.

Got into an altercation with some people.

I was really young and very impetuous.

And I wound up hurting some people pretty badly.

And it's like 17 years now that I've been out.

And it's just in the last few years that I've started to get a grip on it.

So like, it takes a while.

- [Mario] Jay Elias goes to college now.

He heard about the Detroit art scene and came here 10 years ago finding solace creating art, casting metal through his Evolution Art Studio.

He says Aaron Kinzel helps him with issues that have followed him since incarceration.

- Inside, you have this very aggressive, hyper-masculine persona in male facilities.

But even in a lot of female facilities, you may not be expressing emotion like you would normally in conventional society.

So I wanted to break that paradigm and get people to be open and connect with their community, and just be really good citizens.

- How long have you been out now?

- Almost six months.

- Wow, so you're super fresh.

- Yeah.

- I was only in prison for 11 years, I mean, which is a long time, right?

But compared to like some of the other people that were attending that camp, 30 years, 40 years.

You get locked up when there's Atari, and you come out and you got a, you know, super computer in your pocket.

It's tough stuff.

Some of that's really tough to process.

- [Mario] Lawanda Hollister, in her 50s, a regular trauma camper since it began when she left prison in 2020.

- Anytime people see the word reentry, they automatically think that it's about the resources.

And it's not always about the resources.

It's about the policy.

- [Mario] She's become an activist fighting for better opportunities for returning citizens.

That while working two jobs.

- When you give this to Chlo, tell her she's on the clock.

- [Mario] One is her catering company, The Chow Hall.

This night in Detroit, feeding and entertaining some formerly incarcerated, their friends and families.

- My favorite part about this is I'm able to employ not on a large scale, but on a every now and then type basis other returning citizens.

- [Mario] Hollister's finding stability.

This year, a proud homeowner in Ypsilanti.

But looking back, she came from an unstable family filled with trauma.

Trauma she tells me led to decisions she'd regret.

- We came here when I was young to Michigan in Flint, - From?

- Chicago.

- Chicago.

- And just when I turned 17, my family decided they were gonna stay in Chicago.

And so I had no one here in Flint with me.

My boyfriend was here who I was very much in love with.

And I stayed with him, you know, from pillar to post, wherever we could find to stay.

And during that time, he had been involved in a relationship other than ours.

And... - [Mario] Hollister says she just wanted to talk to the other young woman, but it got heated.

- The argument turned into a fight.

- [Mario] Hollister stabbed her.

Guilty of second degree murder in 1986.

Behind bars for 34 years.

You were 17?

- Mm-hmm.

She was 18?

- Mm-hmm.

- And your boyfriend was 19 going on 20?

- Mm-hmm.

Being a returning citizen, it's a lot.

People think: Oh, you're outta prison.

You should be happy and, you know, move on with your life.

Get over it, go ahead.

But there are a lot of issues that we have.

- [Mario] Jay Elias, camp participant.

This year, he's also a camp art instructor.

- [Jay] We create these negative spaces with positive intentions.

- [Mario] In the end, everyone will have a piece of art in their own design, cast in aluminum.

- How do we leave a mark that has a positive effect?

How do we transform this negative into a positive?

- [Mario] Along with the metal work, Elias is studying psychology at Wayne State with an eye on a graduate degree in art therapy.

- Giving people something that creative allows them to really just express themselves non-verbally.

'Cause a lot of times, I don't like to talk about my trauma.

My trauma's very personal.

There's a lot of things that we say as ex-cons that only other ex-cons would really understand.

You know, it's kind of like you learn this language when you go in.

So it's great to like hang out with people who are coming home and want to get better like right away.

- In the professional world, in the business world, for example, retreats are commonplace, right?

Company retreats because we know this is how things get done.

- [Mario] To improve morale, productivity, that's Trauma Camp's mission too.

But maybe it goes a bit deeper.

- It's hard to talk to a parole officer that, you know, went to a school that was paid by their parents and never did a day in jail, doesn't know what the hole is like.

And they're trying to tell you, "Hey, go get a job."

- When you break it down from a macro approach, it's good for society.

I mean, everybody talks about recidivism.

I hate hearing that, a statistic.

But like everybody likes to hear: Oh, well, is public safety being impacted?

Absolutely.

- What are the real statistics when it comes to recidivism?

- Well, the unfortunate reality is people that don't get access to programs like these or any type of program to really help them out, on average, after nine years being home, 83% of them get either rearrested or sent back to jail or prison.

- I love my therapist.

I like my therapist, she's very good.

But to be amongst my peers, my people, is necessary.

- So you need both kind of.

- Yes, absolutely.

- [Mario] You need those who've walked that proverbial mile and who have overcome.

- Yes.

- But you also need those who've never even walked that mile but have walked other miles.

- Yes, absolutely.

That's the village, that's the village.

- That's the village.

- That's the village.

I am blessed and I am grateful that my village began when I walked out.

- That is gonna do it for us this week.

You can find out more about our guests at americanblackjournal.org.

And you can always connect with us anytime on social media.

We're gonna leave you now with a performance by a member of the second generation of Detroit's techno community.

DJ Drummer B specializes in techno, electronic, and soul music.

And he was a recent guest on "Detroit Performs Live from Marygrove."

Enjoy, and we'll see you next time.

("Time Travel") ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) ("Time Travel" continues) - [Narrator Of Commercial] From Delta Faucets to Behr Paint, Masco Corporation is proud to deliver products that enhance the way consumers all over the world experience and enjoy their living spaces.

Masco, serving Michigan communities since 1929.

Support also provided by the Cynthia and Edsel Ford Fund for Journalism at Detroit Public TV.

- [Narrator Of Commercial] The DTE Foundation proudly supports 50 years of "American Black Journal" in covering African American history, culture, and politics.

The DTE Foundation and "American Black Journal," partners in presenting African American perspectives about our communities and in our world.

- [Narrator Of Commercial] Also brought to you by Nissan Foundation and viewers like you.

Thank you.

(ambient piano notes)