New Sickle Cell Disease Treatment, Returning Citizens Trauma
– A groundbreaking medical study published in the American Black Journal leads to a new treatment option for sickle cell anemia.
We will explore the pros and cons of this new gene therapy.
Additionally, we will take you to a camp that helps returning citizens adapt to life abroad.
And we'll have a performance by Detroit techno artist Drummer B.
Do not go
“American Black Journal” begins now.
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Thank you.
(Mid-Tempo Jazz) (Mid-Tempo Sustained Jazz) – Welcome to the American Black Journal.
I'm Stephen Henderson.
More than 100,000 Americans, most of whom are black, suffer from sickle cell anemia.
There is an innovative treatment approved by the Food and Drug Administration to treat the debilitating pain associated with this blood disorder.
This is the first time that gene editing has been used to treat human diseases.
Although the treatment is really great, there are some concerns about the cost, accessibility and complications of the treatment.
To address this issue, I spoke to Dr. Melissa Creary, a sociologist and assistant professor at the University of Michigan School of Public Health.
He himself lives with sickle cell anemia.
So I was intrigued by the novelty and the possibilities it offered.
Let's start with what it actually is and what effects it has for people with sickle cell anemia.
- Clearly.
Sickle cell anemia is the most common inherited blood disorder.
People from the African diaspora are particularly affected: black and Caribbean Americans.
This is a very debilitating disease.
So as we think about the potential of gene therapy and what it can do for populations, it's a really exciting day.
An estimated 100,000 people in the United States live with sickle cell anemia.
In our opinion, that is an understatement.
About 4,000 of them live in Michigan.
More than half are in Detroit.
So when we think about sickle cell disease and those affected, we think about a large population.
In Michigan, 98% of them are black.
- Yes / Yes.
And this new treatment, you know, I'm not a doctor or a scientist.
I don't think most of our viewers necessarily do that.
So tell me what it is, how it works, and why there have been so many advances in treating this disease.
- Steady.
That's why the FDA approved two gene therapies for marketing in December so people can consider taking them as part of their treatment and cure for sickle cell anemia.
And two types.
One of them is called a Lavo cell. One of them is called Exa-Cell.
Both take your own cells and change them.
This includes chemotherapy.
I was a long time in hospital.
However, this change means that the stem cells have been reprogrammed to one of them.
Or it means the genetic mutation that causes sickle cell anemia.
By deactivating this gene, you essentially enable the production of fetal hemoglobin, which forms healthy, viable red blood cells.
And in both cases, in both cases of gene therapy, the supposed cure happens because new cells are created.
New healthy red blood cells are produced.
- Yes.
As far as I know, at least it's part of medical science and we use it to change the way we treat various diseases.
The idea that radically changing what happens to our stem cells or genes actually constitutes a treatment, or in some cases a cure, has long puzzled us.
- I think that this promise is very excited in the world of science.
And I think, yes, we can think about how this applies to many diseases.
Specifically for CRISPR, Exa-Cell, which I talked about earlier, it's the first... You know, they developed this technology with sickle cell anemia in mind.
So there's a big idea of why and how to target a certain population, a population that has suffered from a lot of medical errors, and then we give them: You know, I look at innovation as a way to fight against these neglected history, and that's exactly what happened.
- Yes / Yes.
You know, growing up in an African-American community, I know people with sickle cell anemia.
I am very aware of the frustration of the medical establishment treating African Americans as having different health outcomes and problems.
Coincidentally, I think the correct word was overlooked.
- Steady.
I think that we see a long history of discrimination among sickle cell patients, which I think is directly related to the institutional and structural racism that we find in all of our systems, especially in our healthcare system. And the way we think about the production of knowledge, the way we think about the development of science.
All of this is linked together.
I hope this is just the beginning of how we can draw attention to this historical neglect in the future.
I am troubled by the idea of providing some scientific justice to a people who need to pay more attention to this historical experience of neglect and discrimination.
We can't say it's a completely new invention and then expect everything to be fine.
- really right.
There are further concerns about its use, distribution and access.
- Absolutely.
One of the important questions we are asking ourselves as we navigate the excitement surrounding this treatment is: Who exactly will have access to this treatment?
Only one location in Michigan will offer it.
This is Detroit Children's Hospital.
In addition to the physical space for this accessibility, we also need to consider financial accessibility and the broader ecosystem of support required.
These treatments cost between $1 and $3 million.
And we still haven't decided who should pay what.
- Yes / Yes.
That's why I would like to give you the opportunity to talk about it in person.
I understand that you live with sickle cell anemia.
Firstly, what impact do you think it will have on you?
Also tell us what it was like to live with this disease in the state we lived in before this discovery.
- Yes, I think it is difficult to fully understand what it is like.
I would like to say that I am a professor at the University of Michigan.
I live with a certain privilege.
Despite all these benefits, I still feel pain almost every day.
This is the main offer.
The characteristic sign of sickle cell anemia is pain.
So the idea that this type of treatment can relieve pain has a big impact on your daily experience.
What you do with sickle cell anemia is how much pain you can feel and how much pain you can tolerate in a given situation.
And the idea of not being attached to that pain gives me a freedom that I don't fully understand.
I think there are many people with sickle cell anemia who have very serious complications: organ damage, frequent hospitalizations, blood transfusions.
I have revealed some of them; No thing.
And when you think back on it, the idea of being so free, you know, not being tied to the health care system or hospitals and really being able to live a life that a lot of people take for granted.
- Yes / Yes.
The phrasing you use is very meaningful in the context of the African American experience.
I mean, I think it's the right word to think about this kind of innovation and progress.
A trauma camp in northern Michigan is helping returning citizens deal with the stresses of life on the outside after their release from prison.
The annual meeting pairs formerly incarcerated people with mentors in a retreat environment with no distractions.
One Detroit writer Mario Bueno, who served time in prison, and producer Bill Kubota join the latter camp to find out how it works.
-We are in Bellaire, Michigan.
This is Tranquil Creek Resort.
We live in this beautiful cabin with at least 15 or 16 beds.
- [Mario] Created by Aaron Kinzel, Trauma Camp.
Former campers refresh their spirits while enjoying northern hospitality.
- Yes / Yes; It's fresh smoked salmon from the Bear River in Petoskey.
- Wow, two days.
He had been swimming in the river for two days.
- He took a shower two days ago, yes.
– [Mario] is in his fourth year at trauma camp.
This time 15 campers came.
-I'll give you a pen and paper.
We'll have a few little things we need to work on.
- People really need to get their heads together.
The thought of quitting is extremely painful.
- [Mario] Kinzel, University of Michigan-Dearborn faculty specializing in criminal justice.
He was also in prison.
- Most of my family members were actively involved in criminal activities.
I see violence at home, I see violence in my community.
- [Mario] 18 years old, stopped by the police.
He was nervous.
Within seconds I made the worst decision of my life.
I got to my seat.
I took out my gun and shot through the window.
- [Mario] Kinzel, charged with attempted murder and other crimes, spent 10 years in prison.
Education changed his life: college, graduate school.
Most of his work currently involves teaching, criminal justice and assisting returning citizens.
- I think I originally started with this mindset, and when I came home from prison in my youth, I realized that some of my problems were a lot of unresolved trauma.
Honestly, I didn't know what trauma was until I started graduate school and started reading more about various literature about the experiences I had: adverse childhood experiences, for example.
All of these things that happened to me as a child really helped me define who I was, not necessarily why, but they definitely led me down certain paths in my life where I made really bad decisions in the future and then got involved with the criminal justice system.
- Before you turned 18, 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 Megan O'Neill conducts the ACE study, which examines adverse childhood experiences.
These people have suffered a lot of trauma throughout their lives.
Childhood trauma in particular is formative for many.
Have your parents or other adults ever insulted, insulted, insulted, or humiliated you?
Trauma Camp strives to provide a truly supportive and humane environment.
We recognize and understand the difficulties they face and the inadequacy of the system to provide comprehensive support for housing, employment and family reunification.
Because there are gaps in the service.
- [Mario] Read the ACE Scorecard.
-Does anyone have 3?
- [Mario] High numbers and high risk of mental and physical health problems.
- 9?
-I was surprised that my grades were so good.
He brings up the interesting point that the mere fact that you have a high ACE score doesn't necessarily mean you have a problem.
But he was talking about the same thing as the resilience gene.
Some people have it, others don't.
I think that makes the difference.
- Instead of the indented cookie dough approach, I like to do something different since we usually work with people.
“Well, that's the point.
“Unless we see each other again.”
I really wanted to work with this person and receive their fear-free clinical healthcare, completely disregarding mental health.
- As we know, the negative experience we have in a prison situation is difficult to think about.
So it's really helpful to come together in such a safe place.
Because you can understand, wow, I'm not alone.
Like someone else went through it and it was still there.
I came home from military service and you know I didn't remember myself when I got home.
I had major issues with post-traumatic stress and yes, I lost my temper.
He argues with some people.
I was too young and too fast.
And I hurt some people really bad.
I've been out for 17 years now.
And only in recent years has it started to catch up.
So it takes some time.
- [Mario] J. Elias is going to college now.
He heard about Detroit's industrial scene and came here 10 years ago to facilitate metal welding and create art at Evolution Art Studios.
He says Aaron Kienzle helped him solve the problem after prison.
-They have this very aggressive personality that is overly aggressive towards male things.
But even in many girls' institutions you can't express your feelings the way you would in a normal society.
That's why I wanted to open these cases to expose people, connect with their community and just be good citizens.
- How long have you been out now?
- About six months.
- Wow, you are so fresh.
- Yes.
-I just spent 11 years in prison, that's a long time, isn't it?
But 30 or 40 years can be compared to some people who have joined this camp.
If you have an Atti, you can lock it and have a supercomputer in your pocket.
It's tough.
Something is really hard to process.
- [Mario] Lawanda Hollister has been attending trauma training camp regularly since his release from prison in 2020.
- When people see the word indented, they automatically think it's about resources.
It's not always about wealth.
It's about politics.
-[Mario] became a worker fighting for better opportunities for returning citizens.
This means two tasks while working.
- When you give it to Chloe, tell him it's under his supervision.
- [Mario] One of his catering companies is called The Chow Hall.
Tonight some of the former prisoners and their friends and families will be entertained and entertained.
- What I like most about this job is that I can hire other citizens who come back from time to time, and not on a larger scale.
- [Mario] Portfolio has found stability.
This year he is a proud homeowner in Ypsilanti.
But in the past he came from an unstable family full of trauma.
He told me that he decided to regret it because he shocked me.
- When I was young we came to Flint, Michigan. - From whom?
-Chicago.
-Chicago.
-When I was 17, my family decided to stay in Chicago.
So there was no one with me in Flint.
My lover, whom I loved so much, was here.
And I lived with him, right where we found a place to stay.
Back then it was something different than us.
And... - [Mario] Hollister said he just wanted to talk to another young woman, but she was angry.
The discussion turned into a fight.
- [Mario] was stabbed by Holsters.
In 1986 he was convicted of second-degree murder.
34 years in prison.
Were you 17 years old?
- Hmmm.
Was he 18 years old?
- Hmmm.
-But your friend was 19 or 20 years old?
- Hmmm.
There's a lot that goes into being a returning citizen.
People think, Oh, you're out of prison.
You should be happy, you know, moving on with your life.
Get it and move on.
But we have many problems.
- [Mario] J. Elias, camper.
He is also a technical coach at camp this year.
- [J] We create these negative places with positive intentions.
- [Mario] Eventually everyone will have their own part of the aluminum industry.
- How can we leave a positive impact?
How can we turn this negative into something positive?
- [Mario] In addition to metalwork, Elias studied psychology and earned a degree in art therapy from Wayne State University.
When you give people something creative, they can express themselves through actions.
Because most of the time I don't like talking about my trauma.
My shock is very personal.
As a former model, we say a lot of things that only other former models will truly understand.
As you know, you learn the language as soon as you enter.
That's why I love talking to people who come home and wish they were better now.
- In the professional world, as in business, one should abstain, right?
The company has fallen behind because we know that's how things work.
- [Mario] That's the goal of Trauma Camp: to improve morale and productivity.
But maybe a little deeper.
- You know, it's hard to talk to an admissions officer who has a parent's salary, went to school and never spent a day in jail and doesn't know what a hole is.
And they try to tell you, “Hey, get the job.”
- It is useful for society if it is separated from the general method.
So everyone talks about repetition.
I hate hearing that, statistics.
But we all want to hear: Well, does this have an impact on the audience?
definitely
- What about RCDVIZM, what are the actual statistics?
The sad truth is that people do not have access to these national programs or other programs that help them. After spending an average of nine years in their homes, 83% of them are arrested or sent to prison. Or prison.
-I love my therapist.
I love my therapist, he is very good.
But I have to be among my colleagues, among my people.
-So you need both.
- absolutely yes.
- [Mario] You need people who think exactly like that.
- Yes.
- But we also need those who have never walked this mile, but others have.
- absolutely yes.
This village, this village.
- It is a village.
- It is a village.
I am happy and grateful that my village was founded after I left.
- We have to do that for ourselves this week.
For more information about our guests, visit americanblackjournal.org.
You can contact us at any time via social media.
We now leave you with the appearance of the representative of the second generation of the Detroit techno community.
DJ Drummer B – experts in electronic and soul music.
He was recently a guest on “Detroit Performance Live from Marygove.”
Have fun and see you next time.
(“The time travel continues”) (“The time travel continues”) (“The time travel continues”) (“The time travel continues”) “Continues” (“The journey continues”) “Continue” (“The Time travel continues") 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) (“Time travel” continues) “) (“Time travel” continues) "Continued) "Continued) - [Commercial Narrator] From Delta Call to Behra Paint, Masco Corporation is proud to offer products that enhance the experience of consumers around the world and enhance the enjoyment of their stay.
Masco has served the Michigan community since 1929.
The Cynthia and Edsel Ford Journalism Foundation also supported Detroit Public Television.
- [Provided by Advertising] The DTE Foundation is proud to support Black American Magazine's coverage of African American history, culture and politics for 50 years.
DTE and Black American Journal are part of our community and world, providing African American perspectives on the world.
- [Commercial Narrator] Nissan Foundation and visitors like you come to you.
Thank you so much.
(piano sheet attached)
