Kai Wright: Hey, everybody. This is Kai. Here at Notes from America, we have been watching headlines about some recent health news with particularly high interest. A new therapy that uses gene editing technology called CRISPR to eliminate the awful pain caused by sickle cell disease has been approved by the FDA, and this is a game changer for tens of thousands of Americans who are living with sickle cell, who are way disproportionately Black Americans. If you haven't yet, you should check out our episode about that breakthrough treatment. It's called What the New Cure for Sickle Cell Disease Really Means.

You can scroll back in your feed to find it but this historic news also brought to mind someone who battled sickle cell disease in the spotlight for many years. The rapper Prodigy. Prodigy is best known as one half of the hip-hop duo Mobb Deep along with his recording partner Havoc. Prodigy passed away in 2017 of complications related to this disease. The following year, some of my colleagues at WNYC worked to tell the story of his life in a really special audio series called The Realness.

I want to share an episode of The Realness with you, which documents the rapper's early life and diagnosis and the forces that helped him beat the medical odds for so long. It also offers a fascinating social history of sickle cell research and treatment history that really has led to this moment we're in now in the news. Check it out, and I hope you enjoy.

Christopher Johnson: Hey, everyone. Just a quick heads up. The Realness contains some strong language. What's up, big brother? How are you doing, man?

Greg Collins: I'm good, man. What's going on, brother?

Christopher Johnson: Nice to meet you, man.

Greg Collins: Ah, you too, man. What's going on?

Christopher Johnson: I was, like, lit. Where do you want me at? Prodigy has a big brother. His name is Greg Collins, and he's much older than Prodigy. He actually remembers the day his baby brother was born.

Greg Collins: That was my buddy, man. I talked to him right away because I never had a sibling. You guys had older brothers, and you wanted to be an older brother.

Christopher Johnson: What did y'all call him when he was born, first of all?

Greg Collins: Well--

Christopher Johnson: Not Prodigy, of course.

Greg Collins: No, of course not. His father's name was Albert Jackson Johnson, I think it was the third anyway. When they were naming my brother, my mother said, "Oh, no, we're not naming him no Albert Johnson." She wanted to name him T'Chaka. They kind of, I guess, worked together. They came to a middle ground and said, "Well, we'll name him that, but we can put the T'Chaka in there." We used to call him Chak, Chaka, Chaky. That's what he was called. Nobody ever called him Bud or Albert. He was Chaka, T'Chaka, and we called him Chaka for short.

I used to always try to do things with him because I wanted that interaction, as my only sibling, my only brother. Yes, I always tried to take him with me wherever I went when he could. Because of his condition though, I didn't get to do that a lot because I had to be very careful.

Christopher Johnson: I'm wondering if you ever saw him have an episode. Can you tell me about one time?

Greg Collins: Many times. There were many times I took him to the hospital. When I had my own family, he used to come to visit me. I think it was twice, he had episodes. I had to take him to the hospital. The pain just seemed so excruciating. I couldn't feel pain like that. Watching him and his pain, going through what he was going through, and just those movements, I couldn't feel that, man, but I felt it. I couldn't feel it, but I felt it. Wow.

Christopher Johnson: Prodigy had countless experiences just like this ever since he was diagnosed as an infant in 1975. Back then, children with sickle cell anemia weren't expected to make it to adulthood. They might not even survive their first few months.

Mary Harris: But Prodigy, he made it. He was born at a breakthrough moment in the history of sickle cell. After decades of neglect, the country really started to pay more attention to this disease.

Christopher Johnson: We're going to leave Prodigy's story for a moment and go back to a period in time when a group of doctors, Black radicals, and even Hollywood stars took a misunderstood disease and turned it into one of the most urgent social and political issues of their era.

Mary Harris: I'm Mary Harris.

Christopher Johnson: And I'm Christopher Johnson. This is The Realness.

Prodigy: The doctor always told me all my life, "You got sickle cell, nothing you can do about it. You're not going to live past 40. That's it." I never thought like, "I'm going to die when I'm 40," because that's what they said but definitely, the pain that I was going through made me off a little bit, you know what I'm saying.

Speaker 7: Welcome to The Mike Douglas Show.

Christopher Johnson: Back in the 1970s, one of the most popular daytime TV programs was The Mike Douglas Show.

Speaker 7: And now here's Mike.

Christopher Johnson: It was hosted by an ex-big band and nightclub singer, and he'd have all kinds of celebrities on stage with him.

Mike Douglas: That was pretty good, wasn't it, huh? How about my band, Johan on the band?

Alondra Nelson: This Mike Douglas Show, which was filmed in Philadelphia, was watched by millions of people every day.

Christopher Johnson: Alondra Nelson is a sociology professor at Columbia University. She's actually written about one specific episode in February 1972.

Alondra Nelson: This particular week, it would have been watched quite a lot because it was guest-hosted by John Lennon and Yoko Ono.

Mike Douglas: John Lennon and Yoko Ono.

John Lennon: Hello, hello, hello. Is the mic on?

Christopher Johnson: On this show, they've got Vivian Reed, the actress. They've got this sketch comedy group called the Ace Trucking Company.

Speaker 9: Where do you think you're going?

Speaker 10: I'm driving to a movie with Betty Soo.

Speaker 9: The one that was out here last Saturday?

Speaker 10: Yes.

Speaker 11: Hey, she's all right.

Mary Harris: In the midst of all that, John and Yoko and Mike Douglas, they turn to something really serious.

Mike Douglas: There is a disease in our society today that is a major concern, sickle cell anemia, and it affects a special segment of the society. Here is a young man who is a medical student and is working on being a leading authority in the field. Meet Donald Williams.

Christopher Johnson: Donald Williams had been working with the Black Panther Party. He'd been helping them test people for sickle cell in the Oakland, California area. When he walks out on stage, he's wearing a suit and he's carrying a black briefcase full of his medical books.

Mike Douglas: You really came prepared.

Donald Williams: Well, I'm primarily a student, and I have to keep my books with me.

Mike Douglas: I see.

Mary Harris: He settles into his chair and jumps right into this really thorough, detailed explanation of what sickle cell anemia is.

Donald Williams: Sickle cell anemia is a disease of the blood. It's an inherited disorder. It's the only way it can be contracted or it cannot be contracted. The only way it can be gotten is through heredity. It occurs primarily in Blacks. It occurs in some Jewish populations. It occurs in some Turks.

Mary Harris: And Mike Douglas, you can tell, he is struggling to keep it entertaining.

Donald Williams: The trait occurs when the person has only inherited one gene from one parent for the production of hemoglobin S, which is the abnormal hemoglobin in sickle cell.

Mike Douglas: Boy, you fell us with those medical terms, you really, really--

Alondra Nelson: Talking about sickle cell anemia is not good television. It's not sexy, it's not interesting. It was clear, certainly a few minutes in, that Mike Douglas is a little bit uncomfortable because he's a TV man and he knows this is not good TV.

Mike Douglas: Now, what is your goal?

Donald Williams: Our goal is to educate the entire Black population in this country about sickle cell, what having the trait means, how it's passed on, how a kid gets the disease.

Yoko Ono: You can prevent it in a way if can--

Donald Williams: You can prevent it only if you prevent people with the trait from having--

Mike Douglas: From falling in love, right?

Donald Williams: Yes.

Mary Harris: This interview is important because it's one of the best examples we have of this pivotal moment in the 1970s when sickle cell became part of the national conversation.

Christopher Johnson: It had come a long way since the disease was first discovered in the West in 1904. That's when a doctor who was looking at some blood under a microscope sees these "peculiar and elongated red blood cells."

Keith Wailoo: What he theorizes is that this isn't just some kind of anomaly, it's an actual new disease.

Christopher Johnson: This is Keith Wailoo. He's a history professor at Princeton.

Keith Wailoo: It's really from the 1910s through the '20s and '30s that clinicians start to identify these sickle-shaped red blood cells as being linked to particular kinds of painful episodes and painful crises, and then early childhood mortality.

Mary Harris: A lot of physicians might not have been putting a kid's blood under the microscope, so when they saw kids with sickle cell come in, they might not have even known it was one condition. They would see kids coming in with pneumonia and meningitis because sickle cell wrecks your immune system.

Christopher Johnson: There's also something called hand-foot syndrome and basically it makes babies' fingers and toes swell up. It hurts so bad that sometimes babies will suck on their fingers and toes just to make them feel better. It's a really common symptom of sickle cell but back in those early days, doctors may not have really known that. Researchers were just starting to figure out how this disease worked inch by inch.

Keith Wailoo: Then in comes somebody like Linus Pauling.

Linus Pauling: After some years at the end of the war, I learned about the disease, sickle cell anemia.

Mary Harris: Linus Pauling won the Nobel Prize twice. He's a chemist. He's often considered one of the founders of molecular biology.

Keith Wailoo: What Linus Pauling and his team of researchers theorize is that there can be such a thing as a disease that's caused by a molecule.

Linus Pauling: Immediately, I thought could it be possible that this disease which seems to be a disease of the red cell because the red cells in the patients are twisted out of shape, could really be a disease of the hemoglobin molecule?

Christopher Johnson: The hemoglobin molecule is a part of the red blood cell and it moves oxygen all over the body.

Mary Harris: Pauling saw this glitch in hemoglobin. It made the blood cells chain shape from round to more of a crescent or a sickle.

Christopher Johnson: Those sickled cells, they don't move through the body as smoothly as round cells. Instead, they stack up in a way that blocks the flow of blood and oxygen.

Linus Pauling: Nobody had ever suggested that there could be molecular diseases before but this idea popped into my head.

Mary Harris: Pauling's discovery was pretty incredible.

Keith Wailoo: What it said is we need to think about diseases as may be happening at the level of small molecular dynamics rather than at the level of infections and viruses or bacteria.

Christopher Johnson: There was also a big problem with scientists like Pauling. It was all in the way they talked about sickle cell patients.

Linus Pauling: I believe first that Heterozygotes should be identified.

Christopher Johnson: Heterozygotes is the term Pauling used to describe people who had the sickle cell trait who might pass it on to their kids, and he had some thoughts on how to stop the spread of this disease, and honestly, they're horrifying.

Linus Pauling: If two Heterozygotes marry one another, they should have no children in my opinion.

Keith Wailoo: In a fairly naïve comment he says well, maybe we can find a way to tattoo on the forehead people who have the sickle cell gene and you put a tattoo on another person's forehead who's also a carrier. Then he argues that they see each other, and they see that each of them carries this gene, and maybe they will avoid falling in love with each other. That is to say that they themselves will recognize the danger.

Linus Pauling: If they want to marry one another, they should probably be sterilized so as to be sure that they would have no children.

Keith Wailoo: He was just trying to think through how do you actually solve this problem knowing what we know about the mechanisms of inheritance. This is a good example of how sometimes scientists can be callous because they are narrow.

Christopher Johnson: This kind of scientific approach to this cool callous theorizing, this wasn't going to be enough to save lives. That was going to take a different kind of fight in the communities where sickle cell was being lived and treated. That would have to be a fight advocating for people.

Keith Wailoo: Sickle cell disease sees a very gradual two-decade transformation as a high-profile cultural phenomenon.

Mary Harris: It started in the 1950s with the Civil Rights Movement.

Keith Wailoo: Then there's a real turning point in the late 1960s with the Black Panthers who essentially argue that not only is this our disease, not only is this a statement about what it means to be Black but we need to determine our own future by spreading information about it, by educating ourselves for it, and by raising funds to actually support the health and wellbeing of our children.

Christopher Johnson: The Black Panthers created a national sickle cell screening program. They would test people everywhere, at churches, at clinics, at community education rallies.

Bobby Seale: I'm sure we tested over 4,500 people for sickle cell anemia last night.

Christopher Johnson: Party Chairman Bobby Seale helped lead the charge.

Bobby Seale: I think that the voter registration is running neck and neck with it.

Keith Wailoo: It really becomes part of that broader dynamic that's very much part of the late 1960s rise of Black power.

Christopher Johnson: The Panthers made the problem of this one disease, sickle cell anemia, about something much bigger. They made it about the exclusion of Black people from mainstream medicine.

Alondra Nelson: Moreover about their concerns for how healthcare and the neglect of healthcare is a way of doing harm to Black communities, right? Not only is it a benign neglect, they accused it of being a kind of genocide.

Christopher Johnson: The Panthers also wanted people with the disease to understand that they were entitled to the best care.

Alondra Nelson: That they deserved research into their disease, that they deserved scientists, our best scientists putting their efforts into trying to uncover or to discover or cure for the disease, and so they really helped to change a national conversation about the disease.

Christopher Johnson: There was this huge groundswell in the 1960s and the early '70s that turned a spotlight on the sickle cell anemia. The Panthers didn't do it alone. There were TV shows and movies about it. Major athletes and actors were talking about their own struggles with sickle cell. Black folks were really taking ownership of this disease. This is not unlike what a lot of communities would do in the '80s with HIV and AIDS to own this disease and to own the people who are going through it and to protect them as ours.

Speaker 13: Brothers and sisters, peoples and human beings alike, it's good to see you here tonight. We running a kind of revolution that involves our very lives and it involves us feeling what we call people's power starting in the heart of the Black community to the Chicano community.

Christopher Johnson: Then the next step was to get that critical mass of understanding and put pressure for change on people who actually were in positions of power.

Participant 4: Presenting to you the president of the United States.

Mary Harris: In his 1971 State of the Union address, President Nixon had been talking about overhauling the nation's healthcare system.

President Nixon: I will offer far-reaching set of proposals for improving America's healthcare and making it available more fair to more people.

Mary Harris: He was even talking about universal coverage.

President Nixon: America has long been the wealthiest nation in the world. Now, it is time we became the healthiest nation in the world.

Mary Harris: It's not like sickle cell was on Nixon's agenda. His inner circle didn't really understand what the disease was about, but because of all this social and political pressure, it was clear he had to do something, so a year after that speech, he signed the Sickle Cell Control Act into law.

Christopher Johnson: It dedicated $155 million to the research and treatment of this disease. It also created a whole network of sickle cell care centers all over the country.

Mary Harris: The Panthers and others, they saw this as a pretty cynical ploy by president who otherwise wasn't doing a lot for their neighborhoods.

Alondra Nelson: One thing you might say is that Nixon's strategy was an attempt to co-opt the narrative of Black activists, the Black Panther Party about the state neglect of African-American communities, so this then becomes a way to say no, we're actually not neglecting your communities.

Christopher Johnson: Someone on Nixon's team knew enough to find the best people working on the disease and recruited them to advise the president. One of those experts was a doctor who figured out a way to treat babies that kept them alive. She used that same technique to prolong the life of the small frail boy from Long Island New York, who everyone called T'Chaka.

Prodigy: Growing up with sickle cell, it was different for me, man. It made me really angry at God for making me go through that pain. I was a young kid. I didn't understand why I was going through that because I was tired of that pain. Pain and I got real close in those early years.

Mary Harris: Prodigy doesn't talk about sickle cell a lot in his autobiography, but he does talk about how sickle cell changed him as a kid.

Prodigy: Ever since I was born, I was at the hospital at least four to six times a year with sickle cell, every year. Sometimes for a week. Sometimes even up to a month.

Mary Harris: He tells one story in particular about this hospital visit. He's about four years old at the time. His grandmother was there with him. She was watching over him.

Prodigy: I was sleeping hard for a few hours and when she tried waking me up, I wouldn't open my eyes. She called the doctors to check on me and they said I was just sleeping. She called their superiors and they said the same, but my grandmother, a Southern, strong-willed female from the old school knew better.

Christopher Johnson: His grandmother was Bernice Johnson and she was a force, a powerful, super influential businesswoman who owned a well-known dance studio in Queens, New York.

Prodigy: She told them that the next person that she was going to call would be her lawyer if they didn't wake me up immediately. They went into a frenzy finding that all my vital signs were deadly low, and I was slipping in and out of a coma. Grandma saved my life.

Christopher Johnson: It's something that's so many sickle cell patients run up against. Not being trusted, not getting care. What we've learned from talking to a lot of people in Prodigy's life is that his survival depended on a huge network of people. His grandmother, his mom, neighbors, and friends.

Mary Harris: There was also this pediatrician, Dr. Yvette Francis-McBarnette. She was instrumental in making sure Prodigy made it out of childhood.

Prodigy: Dr. Francis had her own sickle cell clinic in a house on Farmers Boulevard in Jamaica, where I hated going because it meant I was getting a penicillin shot in my butt.

Christopher Johnson: Dr. Francis was a pioneer. She had started practicing in the 1950s when mortality for kids with sickle cell still hung around 10 years old. In the 1960s, she opened a clinic in Queens, New York where she treated children with sickle cell. By the time Prodigy was born in 1974, the Nixon White House had appointed Dr. Francis to help with its work on sickle cell.

Mary Harris: When Dr. Francis looked at kids like Prodigy, what she saw was that they kept getting those infections, and that would cause them to get really sick, sometimes even die. The primary thing that goes wrong with sickle cell, your blood cells getting stuck in your vessels has this effect on your immune system, it actually blocks off your spleen, which means that when you get sick, you get really sick. When you get a cold, it can easily become pneumonia.

She and other doctors like her start thinking, "How can we prevent infections in these kids?" The way they did that was by giving these kids antibiotics, shots of penicillin, and it seemed to work.

Elayne McBarnette: Remember that it was uncommon for those with sickle cell to live past their teenage years when mom started medicine, and she was helping kids who-- it wasn't clear if they would survive.

Christopher Johnson: Dr. Francis died in 2016, but her daughter, Elayne McBarnette, she actually worked at the clinic.

Elayne McBarnette: She was doing her best, and she didn't know when she first started helping kids survive past 20, if they would survive to 25, if would they survive to 30? This is groundbreaking.

Christopher Johnson: Dr. Francis started using antibiotics in this way 15 years before the wider medical community acknowledged just how effective it is. Largely because of this treatment, Prodigy is among the first generation of kids born with sickle cell who-- it's almost like the sidewalk gets extended out in front of them very slowly. If you look at a graph that charts life expectancy for people with sickle cell anemia over the past century, the line on that graph spikes right around the early 1970s. This is right around the time that Prodigy was born.

Kerri Edge: I think our favorite game was tag in the dark. Someone's it, you choose who's it, turn the light off.

Mary Harris: Kerri Edge grew up with Prodigy. They met because when she was still a toddler, she started taking dance classes at his grandmother's dance studio. And just like his brother, Greg, she calls him T'Chak.

Kerri Edge: Every Saturday, pretty much, he was there, hanging around, getting into trouble. [laughs]

Mary Harris: What do you remember about T'Chak?

Kerri Edge: He was quiet, funny, a real boy's boy, very mischievous, liked Spider-Man.

Mary Harris: Did you see him have an episode as a kid?

Kerri Edge: Yes. I mean, it had to have been excruciating pain. I've never seen anyone scream like that ever. He appeared to know that it was going to be painful and that there was nothing that he could do, but take the pain. He couldn't stay quiet. I felt like I was supposed to stop it and didn't really know how other than to just go get an adult.

Mary Harris: Kerri and her mom were part of this extended family that took care of Prodigy when he was little. They'd go to the hospital when he was there. They'd take shifts and watch over him.

Kerri Edge: I learned very early that he was not to be alone.

Mary Harris: Tell me about that.

Kerri Edge: T'Chak can't be alone. I mean, he can be alone, but he can't be like completely alone.

Mary Harris: Why not?

Kerri Edge: Because something can happen at any moment.

Mary Harris: All of this going in and out of the hospital, all of these awful experiences he had while he was there, it all just began to take a toll on him.

Kerri Edge: Around the time he was 12, he was getting fed up with it. He also started removing himself more, and I noticed that he became less friendly. He was never rude to me, but I could see him being rude and short with people, and my conversations with him didn't include so much laughter anymore.

Prodigy: Growing up with sickle cell, it was kind of different for me, man. It made me real angry at God for making me go through that pain. I was a young kid. I didn't understand why I was going through that, and I wanted to kill myself. You know what I'm saying? I ain't even want to live anymore because I was tired of that pain. It's like so painful. I was just tired. I was like 12 years old, and I wanted to kill myself. My mother came in my room and she saw me in the closet trying to cut my wrists with a steak knife. You know what I mean?

Christopher Johnson: At the same time, Prodigy was going through all of this. At the same time, he was feeling like he couldn't live with this pain, he was also discovering hip hop.

Mary Harris: He heard how LL Cool J growls on the mic on Rock The Bells.

[MUSIC - LL Cool J: Rock The Bells]

LL Cool J is hard as hell

Battle anybody I don't care who you tell

I excel they all fail

Gonna crack shells

Double-L must rock the bells

Christopher Johnson: He heard Run-DMC's classic track, Sucker MCs. All drums, hard, in-your-chest, kick, and snare.

[MUSIC - Run-DMC: Sucker MCs]

Two years ago a friend of mine

Asked me to say some MC rhymes

So I said this rhyme I'm about to say

The rhyme was Def a-then it went this way

Prodigy: When I heard those songs, that just changed everything in my life. I used to play these songs for my mother like, "Yo, mom. Check this out." As a matter of fact, I used to say Rakim's rhymes to my mother and act like I wrote it.

Christopher Johnson: Rap music spoke to the anger he says he felt because of his condition. All of the fire and the aggressiveness of the music, Prodigy loved it.

Prodigy: I was like, "All right. This is what I want to do." It was just a vibe. You could just feel it. You know what I mean? You could feel this is what it's supposed to be.

Mary Harris: He says hip-hop saved his life.

Kai Wright: Thanks for listening back with me to that episode of The Realness hosted by Christopher Johnson and Mary Harris and edited by Christopher Werth. That audio series lives in its entirety in our archives at wnycstudios.org and it's great so check it out. If you want to learn more about the latest news on effective treatment for sickle cell, check out our own episode called What the New Cure for Sickle Cell Disease Really Means, which you can find by scrolling back in your Notes from America feed. Okay. I'm Kai Wright. Thanks for hanging out. Talk to you soon.

 

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