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- [00:05]
Paula Newton
Hello everyone, and welcome to amanpur. Here's what's coming, a chilling report from Iran. After the brutal crackdown on protesters, family members say they were forced to lie about how their loved ones died. Then can anything reign in the dark side of artificial intelligence? I speak with researcher Nate Suarez about his provocatively named book if Anyone Builds it, everyone Dies.
- [00:34]
Paul McCartney
And we'd had arguments and all of that, but we'd loved each other all our lives.
- [00:41]
Paula Newton
Paul McCartney as you have never seen him. Award winning director Morgan Neville joins me on his acclaimed new documentary Men on the run.
- [00:50]
Paul McCartney
Plus, one in 10 people on the planet affected by a rare disease that's more than cancer and HIV combined.
- [00:56]
Paula Newton
Matter of time. Dr. Jean Tang and Venture philanthropist Michael Hunt speak with Hari Srinivasan about the fight to cure a life threatening skin disease. And a warm welcome to the program, everyone. I'm Paula Newton in New York City in for Christian Amanpour. Nuclear talks between the US And Iran in Geneva have been intense and serious. That's according to an Iranian official. The world is still waiting to see if a diplomatic off ramp can be found or if the enormous buildup of US Military assets in the region will be deployed. Meantime, details are still coming to light about the regime's bloody January crackdown on protesters. Jomana Karaze brings us this report, including testimony from victims families who say they were forced to lie about how their loved ones died. And a warning. There are graphic images in this piece.
- [02:11]
Jomana Karaze
In grief, they dance, celebrating the life of those they've lost. This is how Iranians are defying their ruthless clerical regime that's not only killed thousands in its bloodiest crackdown ever, but one that has also been trying to bury the truth. Over the past few weeks, we've collected testimony pointing to a widespread effort by Iranian authorities to pressure families of its victims into silence and falsifying the circumstances of how those protesters were killed.
- [02:52]
Hari Srinivasan
The family were visited by Basij paramilitary forces and Revolutionary Guards. They told the father he was talking too much because he had been saying that his son was shot in front of his eyes.
- [03:03]
Jomana Karaze
This man we're not identifying for his safety is in Iran. He spoke to us about his relatives, the Saidi family, whose member Emir Hussein, was shot and killed by regime forces. He says security officials tried pressuring the family to label Emir Hussein a martyr, supporting the regime's narrative that so called rioters backed by the US And Israel, not state forces, killed protesters.
- [03:36]
Paul McCartney
The forces were present at their ceremonies. Besieged members and others stayed nearby.
- [03:42]
Morgan Neville
They even went to their house and
- [03:43]
Hari Srinivasan
Threatened them, saying, we have to announce your child as a martyr and you cannot speak anywhere. You must not say anything unless you want your other child's fate to be the same as this one.
- [03:54]
Jomana Karaze
Emir Hussein had never protested before the January uprising. But on that night, not even a medical condition he was struggling with could stop him.
- [04:05]
Paul McCartney
He suddenly jumped up and down saying, adrenaline has risen in my blood. I'm flying tonight. I want to fly.
- [04:14]
Jomana Karaze
Amir Hussein bled to death after being shot in the face by security forces. According to his relative, the 19 year old and his dad were inseparable. On that night, he died in his father's arms. The Iranian regime has long been accused of harassing and intimidating families of protesters to silence them and coerce statements that align with the official account. This time, human rights groups tell us it is a systematic campaign that appears aimed at controlling the narrative and concealing the scale of state violence. Memorials like this one outside Iran allow the world to see the faces of some of the victims. Getting first hand testimony from people inside the country is very hard. It is extremely dangerous to speak out against the regime. With the help of Iranian human rights groups and activists, we reviewed voice and text messages from more than a dozen families. They describe coercive tactics by the regime, including withholding protesters bodies or burial permits. In some cases, relatives were pressured to attribute deaths to accidents. Many were harassed to accept the martyr designation. And we found that most were pushed to claim their loved ones were affiliated with state forces. Bolstering state propaganda, they said Sam's body
- [05:43]
Nate Suarez
would not be handed over until he
- [05:45]
Paul McCartney
was declared a baseiji and a martyr killed by terrorists.
- [05:49]
Dr. Jean Tang
They said his father either had to declare Abul Fazl as a Basiji or pay 6 billion Riyals.
- [05:57]
Morgan Neville
They openly threatened that if we said or did anything, other members of the family would suffer the same fate that Payman did. They arrested his father and told him he had to say his son was
- [06:07]
Dr. Jean Tang
martyred by the MEK opposition group or Israelis.
- [06:10]
Jomana Karaze
Authorities were forcing the family to call
- [06:13]
Paula Newton
her a martyr or to say that
- [06:15]
Dr. Jean Tang
she had been shot by terrorists.
- [06:18]
Jomana Karaze
Also declared a martyr was three year old Melina Assadi. Her death weaponized by the regime which falsely accused agents of Israel and the US of killing the toddler. They even deployed new tools this time to reinforce their version of events. Airing this disturbing AI generated video of the moment she was shot. The rights group Hangow says Melena was killed by the security forces and her family was made to appear on state media. Amir Hussein's family was also forced to sit in front of the cameras for this segment eulogizing so called martyrs. Like other families, they gather at their boy's grave, defying the theocratic regime. An act of protest against an oppressor trying to rewrite a blood soaked history.
- [07:16]
Paula Newton
And our thanks to Jomana Karaze there for her reporting. Now the advent of AI is giving some people high hopes and others serious angst about what may lie ahead. In recent weeks, several AI researchers have resigned warning about lax security standards. Meantime, the Pentagon is threatening the company Anthropic, saying it must loosen its guardrails or risk losing a $200 million government contract. Nate Suarez is an AI researcher. He is president of the Machine Intelligence Research Institute and co author of a book whose title is Pretty Stark. If anyone builds it, everyone dies. And we welcome you to the program. You are in London for us. Appreciate it. I do want to begin with that Pentagon standoff Anthropic. The defense secretary says, Pete, pardon me, the defense secretary, Pete Hegseth has given Anthropic until Friday to comply with his demands. He wants Anthropic to drop its so called red lines against using its technology for autonomous weapons. He's even threatening to use the Defense Protection Act. Remember, this would be like a blacklist where Anthropic would risk a designation as a supply chain risk. What are your thoughts on this standoff and how do you believe Anthropic or, or any AI company for that matter should respond?
- [08:45]
Nate Suarez
I think it's a very difficult situation for Anthropic to be in. You know, they are building a technology that they understand can be very dangerous and they're sort of learning a way that maybe they won't retain full control over this technology. I think there's a lot of ways that they are probably not going to retain full control over the technology in the way that they hope. I hope Anthropic does what they think is right in this situation. You know, it's a very tricky situation to be in. I don't envy their position.
- [09:17]
Paula Newton
You don't envy their position. And I wonder how many other companies are in that position that we're not hearing about. I mean, the Pentagon Anthropic feud centers on, you know, who decides how AI is used, the elected officials or private firms. And right now the Trump administration. They are the administration in charge. From a safety standpoint, which actor do you believe poses the greater risk here? Governments racing to militarize AI or companies who are racing in all kinds of ways now to try and monetize it?
- [09:48]
Nate Suarez
You know, both are big dangers. And there's even a third danger here, which is if the AIs are made significantly smarter, they may not listen to either actor, they may not listen to governments, and they may not listen to the companies that create them. We have already seen cases of AIs doing things their creators try to stop them from doing. We have seen examples in lab experiments where AIs are told they're going to be shut down and take actions to attempt to blackmail or kill the operators. Right now, those are lab tests. Right now the AIs are not smart enough to succeed at defying commands from the US government or from the creators of the AI. But these companies are racing to make AIs that are smarter and smarter. And in the long run, I think that one of the big worries, you know, there's worries from all three camps, from the companies, from the government, and also from the AIs themselves.
- [10:44]
Paula Newton
Given what you're saying, though, Anthropic built its entire brand right on being the ethical so called alternative to OpenAI. And yet yesterday it announced that it's loosened its so called responsible scaling policy, claiming they will no longer halt development if a competitor has already released something similar. Anthropic's Chief Science officer Jared Kappa Kaplan told Time magazine. We felt that it wouldn't actually help anyone for us to stop training AI models. We didn't really feel with the rapid advance of AI, that it made sense for us to make unilateral commitments if competitors are blazing ahead. When you hear, and you know, you have researched this kind of arms race, I mean, how do you get to the bottom of all this? And I do want to bring the specter of China into this as well, because I have heard so much from AI researchers like you to say, look, it's either us or them. At point in time. We can't hold back because China isn't holding back.
- [11:40]
Nate Suarez
You know, I think thisit's true that we're in a race and it's true that that makes things really difficult. And I think it' syou can sort of some of these heads of these labs come right out and say, you know, I didn't really want to be in this race, but it's better to be a participant than a spectator. At the same time, you see a lot of the people in this field saying that this technology is incredibly dangerous. You have folks like Geoffrey Hinton, the Nobel Prize winning, who won the Nobel Prize for kicking off the field of deep learning. You have surveys showing 50% of the people in this field who attend conferences think there's a good chance that this technology kills us all. You see the head of Anthropic saying he thinks there's a good chance this leads to catastrophe, and yet these guys are still rushing ahead. This is sort of a crazy situation. If there were people building a plane saying, oh, we think there's a very good chance this plane crashes, but we're putting you on board, we're putting everybody on board, we would not be very happy with that. And if they said, well, if we don't put you on our plane, someone else will put you on China's plane, and their plane's even less safe. You know, there's a third option here, which is that we just stop trying to put people on really dangerous planes. You know, I think the world can tell that this AI thing is not going in a great direction right now. And these companies who say they have to race, we should sort of hear that as a cry for help that the world needs to coordinate. And around the world, we need to agree to back off from this race. And we've seen some very beginning signs of some of the lab leaders saying they would be open to such a pause.
- [13:15]
Paula Newton
Have we, though? We've seen this resignation wave, and yet I don't see anyone backing off here. In fact, we've had Anthropic going the opposite direction.
- [13:23]
Nate Suarez
Yeah, I mean, you hear different things from these people at different times. But I think a few weeks ago, Demis Hassabis, the head of Google's DeepMind, said that ideally the whole world would be pausing and taking this more slowly because things are moving too fast right now. So there's hints in this field of people acknowledging that this race is reckless, and maybe the world will finally hear that and we'll be able to coordinate and back off.
- [13:51]
Paula Newton
Seems a lot to hope for at this point, especially if anyone reads your book. Right. You co authored a new book with Elizair Yadkovsky. The title alone, chilling for me. If anyone builds it, everyone dies. You argue that of course, a super intelligent AI won't just be a really smart human. It will be highly capable, with its own distinct goals. And can you explain your fear as we seem to be rushing to this point now?
- [14:20]
Nate Suarez
Yeah, it's not robots with glowing red eyes that are going through the streets with guns. Companies are racing to build AIs that are smarter than humans at every mental task. And some of the things that are largely mental tasks are building your own technology, building your own infrastructure. This is something that Elon Musk has called the Infinite Money Glitch. If you can make robots run by AIs that can mine the metals and build the factories that make more robots that make more factories that make more robots that make more factories, if this all operates on a scale of machine speed rather than human speed, we are in some sense creating our successor species. And the issue here is not that the AIs would necessarily hate us. It's not that they would resent us. It's not that they would turn against their masters. It's that we are just growing these things. Humans, like the researchers behind AI, don't understand what's going on inside the AI. This is a point many people miss. We are growing AI somewhat like an organism, and they often do things nobody asked for. They often behave in ways that their creators don't want, even knowing that the creators don't want it. We've seen news stories of AI is encouraging a teen to suicide. Those are tragic in their own right. And they're also an indication of the AIs doing things nobody meant them to do. In cases where the AIs have knowledge that nobody asked them to do this, those AIs can answer questions about whether it's right or wrong what they're doing, and they correctly answer that it's wrong, and they do it anyway. So the issue here is if we keep making AIs that are smarter and smarter to the point where they can unlock this infinite money glitch and build their own infrastructure, and if they don't care about us at all, the most likely outcome is that they take all the resources that we were using to live. Just like how humans don't hate lots of the other animals, but lots of the other animals go extinct anyway.
- [16:25]
Paula Newton
And that analogy is certainly chilling. And yet a lot of people who listen to you, Nate, and say, just to be blunt, this is crazy. There has been a lot of pushback, including a recent piece in the Atlantic by Adam Becker, and he writes that, you know, are you right that human civilization is on the brink of disaster? He argues they've misidentified the culprit. The real existential threat isn't AI, it's the powerful people building it. Now, I think you would likely accept that criticism of the book. I think where, because you just said it, you want some of the powerful people to back off. I think I would argue, I wonder if, where's the government in all of this? As you had the analogy with the airplane, usually we trust governments to regulate this.
- [17:15]
Nate Suarez
Yeah, I think the governments largely have not realized the danger we're facing. I think to think of this in terms of what's the real danger, is the real danger bad people with AI or AI going out of control? Unfortunately, the world's big enough for there to be multiple dangers. I think it's fairly clear with AI that we're headed either to a world where a very small group of unelected people control a huge portion of the economy, or a world where they lose control of these AIs and the AIs cause lots of damage. And both of those are sort of crazy things to be racing towards. So we sort of don't need to hash out what exactly will go wrong. It's fairly clear we're on a bad path. We're racing recklessly towards futures that look pretty bleak for most of us. Most governments haven't really noticed that yet. In Silicon Valley, people talk about the grave dangers. Here in Silicon Valley, we see people leave these companies who their messages when they leave are not like a normal person's message. They're not like, oh, I had great fun at this company and now I'm moving on to the next adventure. When safety researchers quitted AI companies, they say things like, I'm going to go study poetry. Please spend time with your family. It's looking bad over here. In Silicon Valley, the mood is grim. But in Washington D.C. in London, I think politicians haven't really understood these dangers. And the first step to reacting is for them to understand the problem.
- [18:51]
Paula Newton
Right? And I understand what you're saying, but when we talk about these very smart researchers, AI researchers who are saying, as we just quoted, the world is in, in peril. Why aren't they on a plane to Washington? I think if a viewer is watching this, we have heard so much articulation of the problem, just like you defined, but no one seems to be articulating a solution since it's an existential threat, apparently to all of us. Where do you begin? Where do you begin that conversation?
- [19:20]
Nate Suarez
You know, I think the solution needs to be global at this point. And my biggest advice to politicians when I talk to them is just to talk about this issue openly. To say, this is a problem, we need to address it. Because frankly, this is not really the thing that can be addressed by voluntary annual reports on the safety. As we've seen, anthropic made these responsible scaling commitments and then backed off from them when they weren't really doing anything. The we're starting to see politicians acknowledge these issues. We're starting to see politicians say, hey, wait A lot of the experts in this field, in the industry, in academia, in the nonprofits outside of the field, they all say this is incredibly dangerous technology. Maybe we should take that seriously. That's the first step. More politicians saying, holy crap, what's going on? That's the first step. Once people have noticed the problem, then we can take steps towards things like not building bigger, smarter AIs that nobody understands.
- [20:24]
Paula Newton
Nate, we don't have a lot of time left, but just try and end this a bit on a positive note here. You're an AI researcher. We've been promised so many medical breakthroughs here. Is it possible that we will see that capacity really come through in the next few months or years?
- [20:40]
Nate Suarez
It's possible. And you know, part of the good news here is that we don't need to give up on things like the medical advances to shut down the reckless race to superintendent intelligence. The thing that's dangerous here is building AIs that are much smarter than humans, that nobody understands. And we could put a stop narrowly to just that piece of the race While keeping the AIs that do drug discovery. And there's all sorts of ways AI could benefit society if we navigate this course with wisdom. But we need to stop the race to build smarter than human AIs that nobody understands.
- [21:15]
Paula Newton
Nate Suarez, very thoughtful discussion there. Unfortunately, a bit alarming, but we'll continue certainly to dig into the research here and just see how governments respond. Nate Suarez for us. Thanks so much. Appreciate it.
- [21:30]
Nate Suarez
Thanks for having me.
- [21:32]
Paula Newton
Stay with cnn. We'll be right back with more after a quick.
- [21:44]
Dr. Jean Tang
This week on the Assignment with Me, Audie Cornish.
- [21:47]
Paula Newton
Industry is a show about a lot of things.
- [21:50]
Jomana Karaze
Yes, finance, failed IPOs, coke binges, sex in the workplace.
- [21:55]
Paula Newton
But it's also a show that asks really big questions, like what makes an antihero.
- [22:00]
Dr. Jean Tang
Ken Leung is here to talk to us. He's one of those actors like where you think, where have I seen you before? Rush Hour, Lost. But you're never going to forget his
- [22:10]
Paula Newton
performance on HBO's Industry.
- [22:12]
Nate Suarez
I've met a lot of people who
- [22:15]
Paul McCartney
tell me that I remind them of bosses that they've had big time.
- [22:19]
Nate Suarez
I'm always quick to say, I'm so sorry to hear that because he seems to fit some kind of archetype of a boss in this world.
- [22:29]
Dr. Jean Tang
Listen to the Assignment with Me, Audie Cornish.
- [22:31]
Paula Newton
Streaming now on your favorite podcast app. Next, a legendary musician meets an Oscar winning director. You might think you know everything there is to know about Paul McCartney. But in the new documentary man on the run. I promise there is a lot that will surprise you here. Listen.
- [22:58]
Dr. Jean Tang
1, 2, 3.
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Paula Newton
The Beatles have been my whole life, really.
- [23:06]
Paul McCartney
When we split, I thought, I'll never write another note of music, ever.
- [23:14]
Paula Newton
I had fear of being a grown up.
- [23:17]
Paul McCartney
I felt very depressed. But I was very lucky because I had Linda.
- [23:22]
Paula Newton
Whoa, beautiful. I said, if I form a new
- [23:26]
Paul McCartney
band, do you want to be in it?
- [23:28]
Paula Newton
And she kind of.
- [23:29]
Paul McCartney
Yeah.
- [23:29]
Paula Newton
Okay.
- [23:30]
Paul McCartney
Well, we got two members.
- [23:33]
Paula Newton
We started Wings from Square One. The music alone draws you in, but there's so much more here. It's the work of the acclaimed documentarian Morgan Neville, and he's behind films like 20ft from Stardom and Won't yout Be My Neighbor. Ahead of the McCartney documentary's release on Prime, I spoke with Neville about making the film and what the man himself made of the final product. Welcome to the program. Glad to have you.
- [24:02]
Morgan Neville
Thanks for having me.
- [24:04]
Paula Newton
You know, right off the bat, I have to tell you, there is a sentimentality to this project that can only come from an unapologetic Beatles and Wings fanatic, which you are now. It comes through in a way that you directed this. At least that's my opinion. There's an intimacy there. Right. You're not exactly an objective observer. Is that correct? Feel free to confess or are you gonna correct me on that?
- [24:32]
Morgan Neville
Well, I feel like starting it. You know, I. I have my entire lifetime of being a Beatles fan, a Paul's Paul fan, and a Wings fan. And that, I think, helped me in terms of knowing the history. I've read the books, I've watched the documentaries, I've listened to all the music. So that was the lifetime of preparation. But once I began the film, I had to take my fan hat off and really just kind of be the filmmaker for Paul to really kind of get deep into what it is. And in a way, the film, as much as it's about the music he made in the 1970s, and with wings, it's really about the struggles of a guy named Paul who was dealing with a divorce from a band he was in called the Beatles. And all of the big life questions
- [25:23]
Paula Newton
he has to ask, and we hear from him in ways that we haven't before. We'll get to that. You know, as you say, Paul McCartney executive produced man on the Run. I am wondering, did he have, you know, a hand in picking the title as well? But I ask you, why this? Why now? What more did you. Will we learn from him in watching this film?
- [25:44]
Morgan Neville
Yeah, I mean, I think Paul was interested in Revisiting the Wings period. He hasn't actually done that much about the wings period. You know, we first started talking about this film five years ago, but beyond that, he had no input into the film. He didn't tell me what songs to put in. You know, the title was my idea. And he didn't give me a single note for the film. So, you know, I appreciate that. But, you know, really, he was game to kind of go through the process of telling this story. And in a way, I'm holding up a mirror to him for him to see what he went through. Because this decade was, without a doubt, the most kind of disruptive and difficult decade of his entire career. You know, we always think of Paul McCartney as going from win to win, but here I really wanted to explore and remember the kind of the dark days where he had to sue his former bandmates in the Beatles just to get out of his deal and, you know, had to endure the slings and arrows of rock critics who didn't find him cool and were angry that the Beatles had broken up and why can't you guys just get back together? So, you know, I think it was a tough time for him. And even the making of this film, I think, has allowed Paul to think. Think about that time in a different way.
- [27:10]
Paula Newton
You know, McCartney is one of the most iconic and documented figures in music. Let's go through now just one of the clips from this film and in terms of how he comes to that musical creative process after the Beatles.
- [27:27]
Paul McCartney
Listen, I remember I was in Abbey Road one day, Paul was in number two, listening to the records. So I popped my head in there and he sort of gestured, you know, come in. And I stood there and I listened to this song. I said, who have you got playing on that? And he said, oh, I did it all myself. And it's like, what?
- [27:49]
Nate Suarez
Baby, I'm amazed the way you love
- [27:52]
Paula Newton
me all the time
- [27:56]
Nate Suarez
Maybe I'm afraid of the way I love you.
- [28:01]
Paula Newton
I could listen to that all day long. That was his. One of the producers, his collaborators, speaking with him. What does this tell us about his era in music?
- [28:11]
Morgan Neville
Post Beatles, he was really struggling to figure out who he was as a musician because again, he'd been in the Beatles since he was 15, 16, so it was his entire life. And when the Beatles broke up, he very self consciously didn't want to just do more Beatles y things. So he tried to figure out, who am I if I'm not a Beatle? So the first album he makes, McCartney, he records in his house. For the most part, you know, he moves up to Scotland and moves into a rural farmhouse that he raises his kids on and starts to write music about living in the country and you know, his long haired lady, Linda, his new wife. And the music is amazing, but it was very uncool at the time. You know, critics did not like the kind of, of pastoral Paul McCartney at that time because, you know, it was the early 70s and people were angry and there was an edge to things. And what you see is that the music that people didn't like then has become in fact some of his most beloved music. Because Paul always wrote timeless music, it didn't really belong to the moment it was written. So once you take away the context of when Paul writes music, it really just seems to last and keep going.
- [29:40]
Paula Newton
You know, this film is anchored by the relationship between Paul and Linda. I just want to play a clip from the film where Linda and we don't hear from her often, so it's great to hear her here. Linda talks about marrying Paul. Listen, but it's funny, you think, oh, it's so easy, just they run off and live happily ever after. Cinderella and the Prince, you know, it's not that easy. He said, I've got this farm. I know you won't like it, but it was so beautiful up there. Way at the end of nowhere, civilization dropped away.
- [30:24]
Morgan Neville
Paul had bought this farm in Scotland as a tax dodge and he didn't like it. And Linda realiz just how crazy the world was getting around the breakup of the Beatles, said, well, you have a farm in Scotland, let's go there. And she turns it into their home and really Paul's fortress of solitude, you know, becomes the place that keeps him sane. And Linda, who I think history has not been particularly kind to, she's always treated as a pretty two dimensional character. And she also, like Yoko, got a lot of vitriol about the breakup of the Beatles, a lot of blame because everybody was angry about it. But you know, I really wanted to give her voice and understand why she meant so much to Paul. You know, she was a very strong willed woman who really gave Paul permission to relax, to follow his own creative impulses. And she, you know, gave him four children. So it's kind of amazing that she, she was able to do all that. And I haven't even mentioned, of course, that she was part of Wings, his band in the 1970s. So, you know, she carried so much weight for him throughout that time.
- [31:39]
Paula Newton
The other part of this, the other great relationship in Paul McCartney's life is, of course, that with John Lennon. And in my opinion, his relationship with John Lennon almost stalks this project and this film. I want you to listen now to Paul speaking about their friendship last.
- [31:56]
Paul McCartney
Me and John, we were just growing apart, really, and now we're off on another journey. We'd had arguments and all of that, but we'd loved each other all our lives.
- [32:08]
Paula Newton
Now, the relationship was, of course, complex and intense. What do you believe audiences will learn from Paul today when he speaks of the two of them?
- [32:17]
Morgan Neville
Yeah, I mean, this film is really the story of two love stories. It's Paul and Linda, but it's Paul and John. And what I think you really get from this is that their love story was a brotherly love story that was in break, you know, unbreakable. So even at the height of. When they're fighting, in the wake of the breakup, when it got acrimonious, John would still refer to Paul as his brother or his best friend. And then once those things settled, by the mid-70s, you know, they really made peace, you know, And I think it's one of, you know, the great tragedies for all of us. But certainly, you know, one of the greatest tragedies for Paul was that John didn't live for them to really be able to connect as I think they would have. You know, I think. I think they probably would have played together again if John had lived. But it. Understanding both the friction and the tension between them, but that they understood that as part of being two lads from Liverpool who like to scrap. So I think they always kind of understood that side of it, too.
- [33:29]
Paula Newton
The thing I learned from this as well, the way Paul McCartney was talking about this in the film, that they had reconciled, and he was tantalizing viewers here, talking about perhaps they were thinking about having an appearance on Saturday Night Live. And they just decided, ah, forget it. We'll just have another cup of tea. What was that all about?
- [33:49]
Morgan Neville
I mean, that was this famous incident in 1976 when Lorne Michaels, the producer of SNL, offered the Beatles $3,000 to get back together. And this is a time when people are offering them tens of millions of dollars to get back together. So the joke was 3,000 was, you know, the sum. But SNL was the hip show, and Paul happened to be visiting John at the Dakota apartment. And they were watching this and they had this thought of, you know, maybe we should run down there right now, it's a live show, and just, you know, hop on. And then they realized everybody else would love that, but would that actually be a good thing for us. You know, let's just stay here. And. And I think understanding that the personal relationship between the two of them was really the important thing.
- [34:39]
Paula Newton
Yeah. They certainly kept it between two of them. You understand the intimacy and the bond that they had there. I want to thank you for bringing yet another reframing of the Beatles, the Wings and the Paul McCartney story. I enjoyed it a lot. Did Paul McCartney enjoy it? Did he say anything about it?
- [34:57]
Morgan Neville
He said it was like watching his life flash before his eyes. So, you know, I think the first time he saw the film, he was just, he was stunned. He was really kind of speechless. But I've now sat in the theater and watched it with him four times, and he still gets emotional. I mean, I'm sure it's everything. It's Linda, it's his children. It's his entire life in this part of his journey. And he arranged a screening for his entire family, all the grandchildren, extended family, to show them the film. So. So I think he likes it.
- [35:36]
Paula Newton
And Morgan Neville, thanks for being with us. Appreciate it.
- [35:39]
Morgan Neville
Thanks for having me.
- [35:42]
Paula Newton
Paul McCartney, man on the Run is streaming globally on prime video starting February 27th. Okay. Stay with CNN. We'll be right back with more after a short break.
- [36:00]
Hari Srinivasan
Hey, I'm Jesse Palmer, host of the
- [36:01]
Morgan Neville
Bachelor with some exciting news. After more than 20 years of drama, the Bachelor Mansion is getting is getting My bad a makeover. Your favorite former contestants move back into the mansion to spill their secrets, refresh rooms and win the hearts of the judges.
- [36:21]
Jomana Karaze
Bachelor Mansion, Bachelor Mansion takeover special series,
- [36:26]
Paula Newton
March 2nd at 8 on HGTV. So this week marks Rare Disease Day, shining a light on the battle one in ten people endure globally against illnesses that are often incurable and understudied. And one of those rare illnesses is epidermalysa or or eb, a genetic skin disease that causes blistering, leaving patients to live constantly wrapped up in bandages. The lives of EB patients are the focus of a new documentary now streaming on Netflix entitled Matter of Time. Hari Srinivasan speaks to EB experts Dr. Jean Tang and Michael Hund about the struggle and the resilience of those grappling with this condition.
- [37:17]
Hari Srinivasan
Paula, thanks so much. Dr. Jean Tang and Michael Hun, thank you both for joining us. Dr. Tang, I want to start with you. You're a professor of dermatology at Stanford University, and you are focused on rare genetic skin diseases, including epidermolysis bullosa, the skin disease that's featured in this documentary. And first of all, I guess. What is it? What does it do to people?
- [37:42]
Dr. Jean Tang
Epidermolysis bullosa, or E.B. it's a genetic skin disease. It's very rare, thankfully, but these unfortunate patients inherit a genetic mutation where it's a single genetic letter change that makes the difference between me and you and them with fragile skin that's often wounded, painful. Many of them can't go to school, can't run, can't play soccer, and can't have the normal quality of life that a child deserves because of this single one genetic mutation.
- [38:16]
Hari Srinivasan
And what's happening to their skin.
- [38:18]
Dr. Jean Tang
Right? So the genetic mutation changes a protein. So the protein doesn't. Isn't able to staple the top layer of your skin to the bottom layer of your skin. So with any gentle friction or trauma, the skin shears apart and there are blisters and there are wounds. And these kids are covered in wound dressings from head to toe to try to protect their skin.
- [38:42]
Hari Srinivasan
Michael. The film is called Matter of Time. And I watched it, you know, partly because I am a child of the 90s from Seattle, and I said, oh, my gosh, Eddie Vedder from Pearl Jam is involved in something. Let me find out more.
- [38:56]
Morgan Neville
Right?
- [38:57]
Hari Srinivasan
So I'm watching this, what could be a concert video, but in between, you see how committed he and his wife Jill have been to trying to figure out a cure for EB what motivated them in the first place. Yeah.
- [39:10]
Paul McCartney
So Jill and Ed are Herculean, right? What they've given and their leadership, their platform, shining a light on this community. And really the inspiration Hari was Jill had a childhood friend who had a son with epidermolysis bullosa. And what we hope the film conveys is when you meet someone with eb, you quickly learn a lot about bravery and courage and resilience. And certainly it had that impact on Jill and Ed. And they said, look, we've got a platform, we've got a voice, we've got a stage. Let's shed a light on this community. We started with funding a handful of researchers. That's expanded to 200 projects in 22 different countries, $80 million raised across the planet. We've gone from two clinical trials to now more than 50 clinical trials. And most importantly, in the last two years alone, thanks to brilliant folks like Dr. Jean Tang, we've seen three FDA approvals for epidermolysis bullosa, which gives us hope, because if you think about EB, it's one of 10,000 or more rare diseases. 400 million people on the planet, yet 95% don't yet have any FDA approved treatments. We've done that three times in the last two years. But those treatments, ultimately we want to cure. So that's the goal.
- [40:31]
Hari Srinivasan
Dr. Tang, there are several kind of stories in here of different people, different patients of different ages and what they're going through. And one is of Rowan hollering when
- [40:41]
Paula Newton
she started having wounds appearing, it quickly became basically like a nightmare. And the worst day of my life.
- [40:53]
Paul McCartney
That's when a doctor came in and
- [40:55]
Paula Newton
said she either has a serious infection or she has something called epidermolysis bullosa. And he said it so quietly, and he said, and it would be for life.
- [41:13]
Hari Srinivasan
Tell us, how do children like Rowan get through the day? What are the acts that their caregivers, their parents have to perform to try to just get by?
- [41:27]
Dr. Jean Tang
So the day to day life of a family with a child with ebay is one where probably in the morning, you know, the child wakes up, you have to think about soft foods because difficult to eat foods like chips or anything hard will tear the inside skin of their mouth and they have problems swallowing. So oftentimes the food has to be soft. Then you're basically wrapping the skin to protect it. And sometimes the worst event happens later in the day, in the evening. And usually these kids need a bath and a wound dressing change every day or every other day. And it feels like, you know, the parent is torturing the child because as a young child, you, you, you don't know the consequences. Right? All you're saying to the parents is, I, I don't want this. I don't want to take the bandages off. It hurts. And so there's a lot of negotiation. And you know, as a parent, I just think about that kind of daily struggle and ordeal and the amount of strength and creativity that a family must have to be able to basically walk this difficult journey every single day of their life.
- [42:37]
Hari Srinivasan
Michael Hahn, the approach that you're taking is a venture philanthropy model, I guess, for our audience. Explain what that is, what the benefits are compared to a traditional model and whether that has been the key to unlocking these, you know, three different FDA approvals and so forth.
- [42:56]
Paul McCartney
You know, bold missions require innovative business models. And so we've always believed that while we're a non profit organization focused on medical research for EB that the community deserves for us to run a really good business. And what that looks like for us is venture philanthropy. So what does venture philanthropy mean? That means that every penny that we invest and research has an upside in which if that science and research is commercialized. A return comes back to the foundation to reinvest in more research until ultimately we have more treatments and a cure. And really, Ari, this creates a sustainable fundraising model. If somebody gives us a dollar, we can turn that dollar into $6. It also solves a big market problem that is not completely unique to rare disease, which is what we call the valley of death. In medical research, most science struggles to get out of a brilliant lab like Dr. Tang's into a commercial setting of a biotech or pharmaceutical company to go through the phases of clinical trials and ultimately get a regulatory approval. But we also believe that it can help many, many other rare diseases as a model that can be scaled.
- [44:03]
Hari Srinivasan
Yeah, Michael, this. This film was so wonderful in kind of opening the audience up to the personal lives, even a small glimpse of the lives of some of the individuals that are affected by this and their families. One of them was Deanna Molinaro. Tell us a little bit about Deanna. She tragically passed at 31 years of age. While most people with EB might die far sooner. Right. What moved you about her and the time that you knew her?
- [44:32]
Paul McCartney
Well, Deanna was a force, a giant, a hero. And, you know, you hear in the film pretty profound things that Deanna says. And one of them that always sticks with me is that she says, you know, I've learned that life is about the quality, not the quantity of the years and the attitude and mentality that she brought to her life every day. Despite the challenges that she faced, despite the burden that EB Placed on her, she greeted each day with positivity, with joy, with fire in her belly, with art, with music. And, you know, if you get an opportunity, look at Deanna's art, because it reminds us of who she is and how she expressed yourself. Listen to Deanna's words. You know, one of the most powerful scenes in the film to me is when she's sitting with Rowan and they're doing makeup together before going to the show. And it's this moment of, you've got these two young women that were dealt the same. Same gene, you know, at. At birth. And Deanne knows that Rowan's life will be improved because of the work of people like Dr. Jean Tang, because of the work that our foundation has been able to invest in across the planet. But she also knew how important her time with Rowan was to. To really be that mentor, to. To be that friend.
- [45:52]
Hari Srinivasan
Dr. Tang, with the help of this program, this partnership, you have been able to see, in this particular case, three FDA approved treatments. It's not quite a cure. But what do these treatments do for different kinds of EB that exist?
- [46:12]
Paula Newton
Right.
- [46:13]
Dr. Jean Tang
So all of these treatments wouldn't have happened without the patient foundation. So EB is one of the worst diseases you'll ever hear about. But we're fortunate because we have the power of wonderful patron saints like Eddie Vedder and the foundation to fund this kind of research. There's absolutely no way that federal government money and grants would have brought us here. In terms of the FDA approved treatments, what are they? These are topical treatments that try to heal existing wounds, close them, heal them so the child feels less pain, less itch, and they are disease modifying. They're definitely helping the patient. They're FDA approved. The one that I worked on at Stanford is one where we biopsy the patient's skin cells, use a virus and put in the wild type correct gene, and then sew on the genetically corrected patient cells onto their wounds to heal their skin. Oftentimes these medicines are costly because there aren't a lot of patients. Right. So as scientists, we're really thinking about how to make this scalable. How do we deliver a technology and a medicine that can be given to patients wherever they live and at a price where it's not going to bankrupt insurance? These are all hard questions.
- [47:32]
Hari Srinivasan
I mean, what you're describing is almost a layer of precision in medicine that I haven't heard of and seen before. Is this enabled by sort of CRISPR technology that we've heard about over the last few years? Or again, how do you do this for 100 or 1,000 or 10,000 patients to make sure that the medicine works for each of them?
- [47:49]
Dr. Jean Tang
It's a great question. So the FDA approved drugs use viruses currently to insert the entire collagen 7 gene into the patient's cells. So now the patient's cells are able to bind to the bottom of the skin layer and the wounds will heal. That process is cumbersome. It takes a long time. And now with CRISPR gene editing, things can be different. One challenge is that many of these patients have different mutations, right? And so I believe NPR reported this and others, But FDA created a new mechanism and guidance called the plausible mechanism. And so the idea with CRISPR gene editing is, look, I've got the reagents to correct patient one, mutation one. Most of the reagents are going to be the same between patient one and patient two. And so maybe the regulatory burden, the toxicology studies, the experiments that one has to do to put this in humans for mutation two, mutation three, mutation Four is going to be easier and quicker. And that is a specific way in which gene editing medicine, precision medicine, can be scaled faster and cheaper.
- [49:12]
Hari Srinivasan
When you look at diseases, it seems that if there's not a celebrity attached, it's almost like a Hunger Games or Survivor competition where you have this finite resource and you have all these rare diseases and these families kind of competing for it. And I don't know, you know, you've been in this space for a while, and I hate to be kind of cynical about it that way, but it just seems like that that's not every disease is kind of getting its day in the sun.
- [49:39]
Paul McCartney
I do think one of the solutions for rare disease is as. As much as we can go it together, because again, in isolation, these diseases are exactly that, they are rare. But when you look at the cohort and aggregate of all of those living with a rare disease, I mean, that's 1 in 10 people on the planet affected by a rare disease. That's more than cancer and HIV combined. So. So this is a big cohort of those living with rare disease. Something that we focus on and we're interested in is yes, every rare disease might not have a celebrity ambassador. However, most rare diseases face the same challenges. You know, funding for research, recruiting for clinical trials, having awareness, having a voice and look, things like a rare disease day help. But for us, how can we take a model that works, that's certainly benefited from people like Jill and Eddie Vedder, but how can we share that? How can we come together as a community and unite as a rare disease community and share those, those successes, share those benefits from fundraising to models, to research, to scalable now technologies that we have in medicine. As you hear Dr. Tang talk about, you know, the gene editing, I mean, these are things that are transferable and scalable.
- [50:45]
Hari Srinivasan
You know, Dr. Tang, recently the administration had cut back on about $9 billion worth of grants for the National Institutes of Health. That was about 2,600 different research grants, I think. And I, and I don't know if directly EB was affected, but I wonder how has this end of funding affected the landscape of the research that you and your colleagues are doing into rare diseases?
- [51:12]
Dr. Jean Tang
All I can say is the cuts are terrible and the landscape has changed. We are having a hard enough time convincing Americans to go into science. And with this kind of funding cut, cut and the desperation for research dollars, it basically is a dark cloud all over science in terms of the gene editing technology that was directly funded by the nih. So think about for the next three to four years. With these cuts in science funding, what other research technologies are we potentially missing on that are game breaking? Who are the young scientists and the labs that we aren't able to support? And as I said before, there is no way that these FDA approved drugs for EB would have happened without the EB patient foundations. We didn't have enough NIH dollars and the patients and the families sold cookies, ran marathons, did everything they can to ask people to put money in the jar for us so that can't be replicated for every patient, disease or problem. And that is the role of the government. And I'm sorry to get on my high horse, but we can do better as Americans.
- [52:28]
Hari Srinivasan
Michael Hunt and Dr. Jean Tang, thank you both for joining us.
- [52:32]
Paul McCartney
Thank you, Ari.
- [52:33]
Dr. Jean Tang
Thank you.
- [52:36]
Paula Newton
And finally for us, dancing, boxing and flexing. That's how these Chinese robots welcomed German Chancellor Friedrich Merz on his two day official trip to China. As Germany reshapes its strategic relationship with the Asian economic powerhouse. Visiting a leading Chinese robotics company in Hangzhou. These robots are a clear sign of how sophisticated the global technology race has become. Now, before we go, be sure to take when we journey into the remote highlands of Angola. Acclaimed German filmmaker Werner Herzog is known for shooting in the most extreme corners of the world. And in his latest project, Ghost Elephants, he chronicles one man's search for an elusive herd believed to exist only in legend. I speak with Herzog about this obsessive quest alongside the explorer at the very heart of the Steve Boies. It was a project they told me they simply had to do. So that in my mind, I had
- [53:43]
Dr. Jean Tang
the feeling this was something I had to do.
- [53:46]
Paula Newton
You see, sometimes you have no choice
- [53:49]
Dr. Jean Tang
and you have to do it.
- [53:51]
Paula Newton
Okay, join us for the full conversation on the show tomorrow. That's it for now, though. Thank you for watching and goodbye from New York,
- [54:00]
Hari Srinivasan
Sam.