YouTuberculosis Advocacy with John Green | Crooked Media
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September 19, 2023
America Dissected
YouTuberculosis Advocacy with John Green

In This Episode

Tuberculosis is one of the worst murderers in the history of the world. It remains that way today — even though we have diagnostics and treatments that should have helped to decimate it. The challenge? The greed of the corporations that hold those technologies hostage to fees that low-income people and countries can’t afford. Abdul reflects on the disease of poverty. He interviews bestselling author and YouTuber John Green about his quest to mobilize his platform to hold those corporations accountable.

 

TRANSCRIPT

 

 

[AD BREAK] [music break] 

 

Dr. Abdul El-Sayed, narrating: The FDA and CDC have approved and recommended a new COVID vaccine for the fall. A common decongestant found in over-the-counter cold medications doesn’t work, an FDA advisory panel finds. US blood supplies are down 25%, and the Red Cross is blaming the climate crisis. This is America Dissected. I’m your host, Dr. Abdul El-Sayed. [music break] If you haven’t picked this up by now, I’m a bit of an Internet skeptic. Don’t get me wrong. Clearly, the Internet works. It just works too well. I know the Internet is a big place and that I’m talking specifically about the social media part of it here. But that’s the part that mediates most of our interactions with it. I’m old enough to remember when we believed that this thing was going to bring us all together to take on all of our worst human failures. How could disease, poverty or war stand up to billions of people coming together, joining arms to solve society’s biggest problems? Surely it was only our diconnection that had kept us from solving humanity’s faults. Until, of course, we all realized that the Internet age was going to be intermediated by a few huge corporations with the same broken incentives that corporations of all stripes tend to have. Rather than bring us together to solve problems, these corporations realized that they’d be better off showing us the worst of one another to keep us looking and clicking and getting further and further apart. And click we did and post and tweet and sub tweet. That said, every once in a while I’m reminded of what the internet could have been and maybe, just maybe, what it could yet be. A few weeks ago, I came upon a video posted by bestselling author and YouTube star John Green, perhaps a relic of the OG Internet on his YouTube channel, the Vlog Brothers, which started back in 2007. Back when all of us thought that the Internet would be a general force for good and whatever it’s become since, John and his brother Hank have kept the hope alive. They’ve used their channel and the connection to 3.75 million subscribers it offers them to take on some of humanity’s most serious challenges. 

 

[clip of John Green] I really think that if we can understand this problem together and make a compelling case to Johnson and Johnson that they are pursuing a bad business strategy, we can save a lot of lives. 

 

Dr. Abdul El-Sayed, narrating: That’s John talking about tuberculosis, one of Global Health’s worst villains. TB will kill nearly 2 million people this year, mainly poor folks of color in the Global South. But TB is a slow and silent killer, wasting a body away from the lungs over years. And though the main culprit of TB is a bacterium called Mycobacterium tuberculosis, also known as MTB, it’s aided and abetted at every step by poverty, malnourishment and corporate greed. Like other microorganisms, MTB evolves against the treatments that we develop against it. And so we’re locked in an arms race against the bacterium, one that we’d been losing for a while. That is, until federal investments in research and development unlocked an extremely effective treatment for MTB called Bedaquiline. That drug is manufactured by Johnson and Johnson, which owns the patent on the medication. And just as that patent was set to run out, creating a space for the proliferation of lower cost generics, Johnson and Johnson tried to patent another part of the molecule all in a candid effort to extend their ability to make money. It’d be like having a patent on a pencil. And then just as your patent was set to run out trying to patent the eraser too. But here’s the problem. The folks who die of TB don’t simply die of a bacterial infection. No, they die of the poverty that keeps them from being able to nourish their bodies. The poverty that keeps them from being able to afford their medication. Keeping the price high is sentencing millions of people to unnecessary deaths simply to make millions of dollars. It’s literally dollars for deaths. John called on his YouTube community to step up, and they did, helping pressure Johnson and Johnson to offer a lower cost version of Bedaquiline in 44 lower and middle income countries facilitating treatment for millions. I wanted to have him on the show to talk to us about his fight to end global TB, how he’s reminding us that the Internet is fundamentally what we make of it and how he’s dealing with his brother’s recent cancer diagnosis. Here’s my conversation with John Green. 

 

Dr. Abdul El-Sayed: All right. Can you introduce yourself for the tape? 

 

John Green: Sure. My name is John Green. I’m a novelist and YouTuber. 

 

Dr. Abdul El-Sayed: When you say YouTuber, I think you don’t give yourself the due credit. You are like the YouTube star before being a YouTube star was, like, a real thing. So you know what I say like YouTube star of my generation. Like, that really truly means something. So I would say, you know, there’s a YouTuber with a big asterisk on it um with a capital Y capital T. Um. I just want to ask you, just just for context, like what actually started you on that journey? Like you and your brother have hosted Vlog Brothers now for more than a decade um and you know you sort of built a whole, uh frankly, a whole set of um companies based off of it. What got you started on YouTube and when did you first discover the power of the platform? 

 

John Green: So we started in January of 2007 and we started in some ways because we had discovered the power of the platform. We were huge fans of a couple of really early online video projects, so early that some of them weren’t on YouTube and it was a big point of connection for my brother and me. It’s what we would talk about when we talked about stuff. And so that’s when we had the idea, Well, what if we made an online video project where we talked back and forth to each other every weekday for a year, and that became Vlog Brothers, which is now, I think it can drive. It’s been around a long time, and uh I think it’s 17 years old. As far as when I first experienced the power of YouTube up close for myself. It was actually only a few months in. So for the first year, most of that time Hank and I only had like 300 or 400 daily viewers, but they were 300 or 400 really active, engaged viewers. And I was hospitalized for orbital cellulitis for a infection between my eye and my brain in March of 2007, right when we were starting our YouTube channel and Hank asked people to take pictures of themselves with something on their head to cheer me up. And this was before the iPhone. So it was actually pretty hard to take a picture back then. And of, you know, the 350 people who watched the video, about 320 sent in pictures. And that was the first time I was like, oh, these people are they’re ready they’re ready to act. They’re ready to do stuff together. They’re ready for projects. They’re not just watching something, they’re a part of something. And that that was very that felt very different from television or from movies or even from books, which was the world I came from. And that was the first time I felt like, wow, this this could really be something. 

 

Dr. Abdul El-Sayed: That is uh you know, incredible. And it’s um apropos that the first recognition of the power of the platform had something to do with, you know, your own health care scare. But one of the reasons we’re talking today is because you’ve decided to weaponize your platform through Vlog Brothers and um the Nerd Fighters, as you call your community, to take on big picture Global Health challenges. Stepping back, before we talk about it, what actually got you interested in global health and in particular in tuberculosis? 

 

John Green: Well, Hank and I have been interested in global health for a while. I think we started because we were aware of the fact that we had a global community and and a lot of our viewers lived outside the U.S.. And so while talking about the U.S. health care system has been a focus for us and is something that’s really important and our um company Complexly makes health care triage, which is a show about health care economics, health care systems. We understood that if we were going to be able to talk to everyone in our community. We were going to have to think more about health equity globally. And so I think that’s where it began. But as early as 2009 or 2010, we were working with Partners in Health on their their work in Haiti. And then slowly we came to know Partners in Health’s theory of change, how to bend the arc of the universe toward more equity, toward justice. And I was very convinced by that. I guess the way Dr. Paul Farmer was an extraordinarily convincing person. As as is Ophelia Dahl and and Jim Kim and the other co-founders of Partners in Health and and so it really happened quite slowly at first. But then in 2014, we saw the Ebola epidemic emerging in Liberia, Sierra Leone and Guinea. And I called the chief medical officer at Partners in Health, Dr. Joia Mukherjee, and I said, we really want to fundraise for this. Are you going to go and and help out with the Ebola response? And she said, John, we are going to go, but I want you to understand something. And I and um I’d like to ask you to join me in making a commitment, which is that we’re going to go, but we’re going to stay and the Ebola epidemic will end and when it ends, the global health money will be sucked out of West Africa and it will move on to the next crisis because there will be a next crisis. But we’re going to stay. And I’d like to ask you if you’ll consider staying with us. 

 

Dr. Abdul El-Sayed: Hmm. 

 

John Green: And that’s exactly what happened. It was really easy to fundraise for Ebola response. Everyone was terrified. And then the world moved on. But from the perspective of Sierra Leoneans, the health care system was actually more fragile after Ebola than it had been just before Ebola. 10% of Sierra Leonean health care workers died of Ebola. And so there were fewer health care workers. The systems had been just devastated by Ebola. The the ability to access lifesaving medication, the ability to access clinical care, all of that was harder after Ebola than it had been just before, even though there had been this huge influx of of money. And and for us, that’s really when we started to understand that we could make a difference by staying and that long term problems demand long term solutions. And that’s when Hank and I both became really involved in trying to follow the story of Sierra Leone’s attempts to strengthen its health care system. And that kind of directly led to my interest in tuberculosis, because tuberculosis is the world’s deadliest infectious disease. It has been for almost all of human history. And even though in the U.S., it’s easy to think of it as a disease of the past or else a disease of the most marginalized people who are imprisoned, people who are unhoused. Um. The truth is that it’s um it’s a disease that can affect anyone. And the causes of TB in the 21st century are really forms of injustice. 

 

Dr. Abdul El-Sayed: I want to drill down on TB because I think you’re exactly right. We talk a lot about the social determinants of health, and listeners of the show know I hate that verbiage because it doesn’t mean anything to anybody who needs to know. Um and TB is a perfect example of that right– 

 

John Green: [laugh] That’s so true. 

 

Dr. Abdul El-Sayed: Because it’s a disease fundamentally of poverty. And– 

 

John Green: Yup. 

 

Dr. Abdul El-Sayed: You know, I was exposed to TB when I was a kid. Why? Because I would spend a lot of my childhood summers in Egypt among folks who were substantially poorer than the folks with whom I’d spend most of my time here in the United States. And TB is endemic in in Egypt. It’s not as bad as it is in other countries, but it’s directly proportional to the GDP per capita in a country, more GDP per capita, less tuberculosis and vice versa. And we think of this as being one of those diseases that um doesn’t cause the level of morbidity and mortality that it ultimately does. I want to ask you, you know, you spend a lot of time writing to a young adult American audience. Why is it that we just fundamentally missed this point about TB specifically, and frankly, why don’t we spend more time do you think educating about it? Because I think about my science classes, I didn’t appreciate the burden of TB until I until I went to med school. Right. And that’s– 

 

John Green: Right. 

 

Dr. Abdul El-Sayed: –after a whole– 

 

John Green: Right. 

 

Dr. Abdul El-Sayed: You know, AP science curriculum, a whole undergrad in in biology and politics. And it wasn’t until med school and I was like, Oh, shit, this is like a really, really burdensome disease. Like what what is it about TB specifically that leaves us missing the broader point? 

 

John Green: Well, that’s a really interesting question, and it’s partly because it’s been an issue for hundreds of years. For hundreds of years we’ve been minimizing the role that TB plays in human history. And you’re absolutely right. If you go to a college history course, you’ll learn about trade routes and wars and kings, but you don’t learn anything about infectious disease, even though disease is responsible for 93% of human deaths and historically infectious disease is responsible for most of those. I think that there’s a lot working against TB. Like when Robert Koch first identified the causative agent of tuberculosis, although I would argue it’s not the causative agent anymore. Um. But when he first identified the bacteria that’s um that causes TB in the paper he was almost like defensive. He was like, Hey, I know. I know that we worry a lot more about cholera and plague and the scary diseases, but tuberculosis does kill like five times more people than any of those other illnesses. And some of that is because it’s not disfiguring. Some of it is because it was even as it was stigmatized it was also romanticized historically. Um. And some of it, I think, is that we we thought of TB historically as as natural as a natural process that happened to a certain percentage of people. And that because it was natural, it was a little more acceptable. Then I think that that changed really dramatically after the discovery of M tuberculosis, after the discovery of the bacterium, because then it became a disease of pestilence, of poverty, a disease that spread, you know, in in crowded tenements, in living situations that were associated with poverty, working conditions associated with poverty in mines, etc.. And I think that’s why we don’t think about TB, is because our social order does not value all human lives equally. And until it does, the disease doesn’t treat people equally and the people who are uniquely susceptible. You know, you mentioned that you were exposed to TB, but it was very unlikely that you were ever going to get sick with TB because you spent much of the year in the U.S. it sounds like because you likely weren’t malnourished, because you probably weren’t living in a single room with five or six people or there’s all kinds of factors that go into TB, But all of them are are human factors. These are all human choices. These are a result of human built systems. And that’s why I would argue that you can say that death from TB in the 19th century was caused by M tuberculosis, a bacteria, but you can’t really say that now because we know how to kill that bacteria. We know how to–

 

Dr. Abdul El-Sayed: Right. 

 

John Green: –cure tuberculosis. There’s no reason that anyone should be dying of tuberculosis. And so now when people die of tuberculosis, what they’re really dying of is failures of human systems to recognize that all human lives have equal value. [music break]. 

 

[AD BREAK]

 

Dr. Abdul El-Sayed: I want to click on a couple of pieces that you shared there, which I think are really important. The first is that the tuberculosis bacteria to which I and literally billions of people around the world have been exposed is the most proximate cause of tuberculosis. Without it, there is no tuberculosis. That being said– 

 

John Green: Right. 

 

Dr. Abdul El-Sayed: Exposure to the bacteria will not, on its own terms cause tuberculosis. My BMI has never dipped below like 28. Right? And so there’s a level of inaccess to healthy foods, there’s a level of continuous exposure and burden of exposure. All of the predictors of those things that ultimately end up being such a part of the causal architecture, if you will, of who ends up getting it. And the truth of the matter is, is that, you know, I’m Egyptian-American, my genetics are 100% Egyptian. Me and the person who probably exposed me in Egypt um probably shared right the same ethnic background. The difference is that I was plucked out by an accident of history into a life that didn’t expose me to all of the other things that have to create a TB case. 

 

John Green: Exactly. 

 

Dr. Abdul El-Sayed: The other part that I, I really appreciate that you made was that this is both a disease of compounded poverty as a function of being on the wrong end of uh capitalism. But it’s also such a slow moving disease that we never treat it with the kind of urgency that you would treat an Ebola. And the point that Dr. Mukherjee made, and I echo your sentiments about Dr. Paul Farmer and everybody who, uh you know, who works in that amazing organization. We’ve been privileged to have both Dr. Mukherjee and Dr. Farmer on the show. And Dr. Farmer was a good friend and a mentor to me and so many others. But the fact that, you know, Ebola was so urgent and happened all of a sudden it it it came out of nowhere or at least seemed to come out of nowhere to the global community, gave it a certain uh pop that tuberculosis operating at baseline has never gotten. And it’s this like– 

 

John Green: Right. 

 

Dr. Abdul El-Sayed: –broader problem of ubiquity that that human minds really struggle to engage with. The climate crisis, the challenge with the climate crisis is that it happens slowly. The causes are not directly related to the outcomes, and it’s very easy for us to allow for some slippage in terms of the causal architecture and for us to be like, well, that’s just happening in the background. Meanwhile, in the case of tuberculosis, it’s literally killing millions of people a year. And because those people are poor, because those people and their poverty take away the kinds of platforms that you and I living in high income societies can have, we don’t really pay attention. And so we like push it into the baseline of how the world is, which just compounds the inequity when you think about it. But there’s another piece, too, right? And that’s that so much of the way that we in this country have created our health care system is that it intends to monetize before it intends to heal and treat. And one of the things that I love about how you are leveraging your platform is that you’re calling that out. And you came to my attention because of an incredible video you did a couple of months ago now on a drug called Bedaquiline. Can you talk to us a little bit about what motivated you um to bring this to the nerd fighter community and um and really what it was that this uh corporation, Johnson and Johnson, in this case, one a you know household name uh was trying to do with this drug and and why you felt like it was time for you to leverage your platform against it? 

 

John Green: Yeah. So between 1940 and 1965, we developed eight different classes of drugs that can treat tuberculosis. And as a result, tuberculosis became curable. And so that was a 25 year period that saw a tremendous amount of innovation in TB treatment. And then between 1965 and 2012, we developed no new drugs to treat tuberculosis. And the reason for that is very simple, right? Which is that in 1940, TB was one of the leading causes of death in the United States and other rich countries. And by 1965, it was only a leading cause of death in poor countries. Profit incentives had changed, and when the profit incentives changed, we moved on. It’s a huge issue that we have, by the way, not just with tuberculosis, right, because we are all familiar with antibiotic resistant infections. Well, the main reason we have antibiotic resistant infections is that for those 40 years, there was almost no profit incentive and there still isn’t much profit incentive. And if you’re in a market based system for developing new treatments, you know, we’re literally in a situation where a drug that lengthens eyelashes, which can be valuable, but like a drug that lengthens eyelashes is much, much more valuable than a drug that cures tuberculosis. And we finally got a new drug for TB in 2012, 2013 called Bedaquiline. It’s an amazing drug. It’s really essential to curing multidrug resistant tuberculosis. I became friends with a kid in Sierra Leone in in 2019, I mean, I guess we didn’t become friends in 2019, but in 2019, when I visited Sierra Leone, we visited the um [?] Government hospital there, which is the only TB facility, dedicated TB facility in the country. And and when we arrived, this little kid literally grabbed me by my shirt and just started walking with me around the hospital. And he he was he looked about nine years old, which was the age of my son at the time. And he also had my son’s name, my son’s name and this kid’s name are both Henry and Henry uh had had a good education and spoke really good English, which was nice for me because I do not speak much Creole. And, you know, I just was immediately drawn to him and he was just the sweetest, funniest uh kid. And then I made it back, you know, after he took me around the entire hospital, I made it back to the consult room where the doctors were. And I was like, whose kid is that? Is he like a nurse’s kid? Is he like one of the kitchen staff’s kid? And they were like, no, he’s the kid that we’re so worried about that that’s why we took this detour to come to this hospital. And I was like, that kid? That kid seems fine. To your point earlier about tuberculosis being a very slow moving disease, you know, his illness was reacting to the antibiotics, but it was clear from his sputum samples that it wasn’t reacting well enough and that he was going to be in big trouble. And at the time, for a variety of reasons, he didn’t have access to bedaquiline. Um. He was a big part. Henry and and the friendship that emerged out of that because it turns out by the way, Henry is not nine. He was 16 at the time. He just uh–

 

Dr. Abdul El-Sayed: Wow. 

 

John Green: –was so emaciated by TB that he looked much younger. And um when I visited Sierra Leone again in 2023, I got to see Henry again. And because of extraordinary efforts by the Sierra Leonean Ministry of Health, he was NPIH, he was healthy, cured, attending college. And since then, we’ve become good buddies. I really think that Bedaquiline, as one TB doctor explained it to me, is magic. It’s a it’s a miracle drug. I mean, Henry was on his deathbed in 2021, and he’d been on his deathbed for months. He hadn’t been able to get out of bed for months. When he finally was able to access Bedaquiline and within three weeks he was up and walking, and within eight weeks he was out of the hospital, able to take the rest of his regimen at home with his mom. 

 

Dr. Abdul El-Sayed: Wow. 

 

John Green: You know, um who thought she might never get to have a night at home with him again. And so the power of Bedaquiline is something to to celebrate. And Johnson and Johnsons did take some risks to develop Bedaquiline. They also took a lot of public money. In fact, most of the money that went toward the development of Bedaquiline uh is public was public funds. Um. But then they got to enjoy ten glorious years of having that drug under patent and being able to charge whatever they wanted and making a lot of money. And the patent should have expired in July of 2023. But they organized their entire release of Bedaquiline around the idea that they were going to be able to extend this patent through a secondary patent for an additional four years. And as that date approached, I just kept thinking about Henry, about the millions of of people like him who need access to this drug and aren’t getting it because it costs more than it should cost because there’s no generic competition. And I I got more and more frustrated. You know, this is something that Doctors Without Borders and Partners in Health and lots of Treatment Action group, lots of other organizations had been working on for years behind the scenes try and just begging J&J to lower the price of this drug to abandon their pursuit of a secondary patent. And it was really it only succeeded because of those people’s work. But in the end, um you know, there was enough pressure that Johnson and Johnson uh did. They didn’t release the secondary patent. They still need to do that. But they did allow much expanded access for generic Bedaquiline, which has just in the last month dramatically reduced the price of that drug. You know, our community made a lot of noise, and I think we might have affected the timing of that announcement a little bit. But the truth is, all the all the other real work, as is always the case, we were talking about this before we started recording. All the real work was done up close in slow motion with lots of frustration over years. And and then it all came to a head kind of all at once. And you know, now we don’t live in a world where Bedaquiline is as cheap and accessible as it needs to be, but it’s certainly cheaper and more accessible than it was a few months ago. 

 

Dr. Abdul El-Sayed: First, I appreciate your humility in telling that story and sharing your own uh personal experience with the folks who are affected on the ground. I think so often when we talk about poverty, it is really easy to abstract away the the numbers from the people who all have faces and stories and laugh and cry and have moms who want to spend just one more night with that person at home and we abstract them away as just rates that happen in the baseline. And– 

 

John Green: Yup.

 

Dr. Abdul El-Sayed: I appreciate you humanizing that and also architecting that back up to a lot of the ways that um corporate choices and a frank greed uh operationalize our failure to add a name and a face to the folks on the other end of a dollar sign um to allow them to get away with it. And that experience, I think, is important. And what I love is that you didn’t stop there. Um. So just more recently, you posted another video, which I really love the sort of tagline barely contained rage, which I think would be a great name for another podcast. But um uh–

 

John Green: [laughing] Yeah, I’m surprised you didn’t call your podcast about the American health care system Barely Contained Rage. 

 

Dr. Abdul El-Sayed: Barely Contained Rage. Like, frankly, it’s just it’s a fantastic it’s a fantastic name. Um. But but you post another video about two companies or more like a Russian doll set of companies called Danaher and Cepheid, and they make a really, really important diagnostic tool that can be used in these um settings. Can you tell us a little– 

 

John Green: Yeah. 

 

Dr. Abdul El-Sayed: –bit about the GeneXpert machine and now the games that they’re playing around trying to monetize sick people in low income societies to make a buck? 

 

John Green: Yeah, that’s exactly what they’re doing. Um. You know, it’s classic colonialism, impoverishing the already impoverished to benefit almost exclusively the richest and most powerful people. Um. So so just for context, about 10 million people get sick with TB every year, and about 4 million of them never get diagnosed at all. Um. They can’t access good tests. The disease as as as you say, usually progresses quite slowly. Um. There’s a variety of reasons why people don’t find out they have TB until it’s too late. But one of the main reasons is that that there aren’t good tests and the way that most people who do get diagnosed with TB get diagnosed is through the same way we diagnose TB 130 years ago. By looking at a sputum sample through a microscope. And that was great technology in 1885. Amazing game changing technology. Today, it misses about 50% of cases. That’s another reason why people don’t get diagnosed. It’s especially likely to miss cases and kids, and especially likely to miss cases in immunocompromised kids. Kids who might be living with HIV or might be living with other diseases that that harm their immune system. And so the most vulnerable people are the least likely to be diagnosed with smear microscopy. Fortunately, there’s this amazing machine called the GeneXpert machine that’s made by Cepheid, which, as you say, is a Russian doll inside of the larger Russian doll that is Danaher. And this machine, it doesn’t just test for TB, it can also identify whether or not your your TB is resistant to rifampicin, which is a hugely important thing because it means that you can start on the right regimen of antibiotics immediately. And there’s another cartridge that can test for resistance to four further antibiotics. And so if you have extensively drug resistant TB or pre-extensively drug resistant TB, it can get you on the right regimen immediately, which is huge. Kids like Henry, I mean, Henry spent six months on the wrong regimen and then he spent six more months on another wrong regimen. Um. And that’s very common for for people who are living with tuberculosis, even if they are getting treated. And so this this machine is amazing. And the things it can do are amazing because there’s also cartridges to test for COVID and to test for Ebola and to test for RSV and all kinds of diseases. It’s an amazing and it does it in an hour. I mean, it’s just I’ve seen I’ve seen these machines at work in rural clinics in Sierra Leone. And in fact, when I was in Sierra Leone earlier this year, a lab tech summarized the situation for me very succinctly by saying, this machine is amazing. If only we could afford the tests. Because the whole business model that Danaher uses is to sell the machines at a low profit margin so that then countries and impoverished communities are locked into that technology and then they price gouge on the tests. And this is the same business model that razor blades use, right? Like you get a cheap razor blade base for your disposable razors and then they price gouge you on the blades. Uh. It’s the printer ink business model, you get a cheap printer relatively, uh and then they price gouge on on the cost of the ink. And this isn’t like–

 

Dr. Abdul El-Sayed: Or now it’s like the uh apparently it’s the the auto business model. You buy the car and they price gouge you on the air conditioning. [laughing]

 

John Green: Exactly right. Like or yeah. Or they price gouge on the software or whatever. It’s called the razor blade business model. And I’m not saying that like Danaher does this as a as a conjecture or as an accusation. Their CEO, Rainer Blair, uh bragged about this to shareholders, saying, we have a razor blade business model in a mission critical application. That mission critical application being diagnosing people with tuberculosis. And this business model is is really, really harmful. It hurts the number of people who are diagnosed with TB, which means there’s more TB going untreated and undiagnosed in communities. It means there’s more drug resistant TB going undiagnosed in communities, which in turn allows for more spread of that drug resistant TB. It’s harmful to human health on every imaginable level. But it also, as you said, it, it punishes the poor more than anyone else. It punishes poor countries more than anywhere else, and it functionally extracts wealth from impoverished countries and puts it in the hands of Danaher, whose two largest shareholders that the, Stephen and Mitchell Rales are among the wealthiest people in the history of the world. One of them co-owns the Washington Commanders, for God’s sakes. And this is a terrible, terrible way of doing business. It’s it speaks to what’s broken about the health care system. And and it is true, you know, just just to get it out there. It’s true. The diagnostic companies spend way more on on R&D than pharmaceutical companies do, right?Like when pharmaceutical companies cry poor or cry R&D, they’re just lying. Uh. But when when when diagnostic companies do, there’s something to that. They do spend money on diagnostic, on on research. They are trying to develop better tests. And I and I I appreciate that. And I think that’s important. Don’t do that at the expense of the world’s poorest people and don’t claim that that’s your raison d’etre when your profit margin on your diagnostics company is in the neighborhood of 31%. 

 

Dr. Abdul El-Sayed: Yeah. And you know, you raise a really important point. I’m asking a devil’s advocate question. I want to say something first, which is that you think about a normal market and supply and demand, and implicit in a supply and demand curve is that some people who have demand don’t get any of the supply. 

 

John Green: Right. 

 

Dr. Abdul El-Sayed: When you’re talking about a test for tuberculosis, there ought to be a moral imperative to recognize that that person who’s demanding a test for which there is no supply will then go on to die of a disease that is wholly preventable by the thing you just created. 

 

John Green: And spread it. 

 

Dr. Abdul El-Sayed: Yes and–

 

John Green: Like and and more people–

 

Dr. Abdul El-Sayed: Absolutely right. 

 

John Green: More people will die of the disease. Yeah.

 

Dr. Abdul El-Sayed: They’re going to go on to spread it to a whole lot of other people who are vulnerable to the disease. Now, the question that our colleagues at these companies would say is well, what’s to motivate us to research and develop all of these great diagnostics if we’re not able to make money on the back end? And I think that sets up a public policy question that all of us ought to be thinking about, which is how do you create a global governance mechanism in global health to incentivize right, the the research and development and production of these kinds of mechanisms that include everybody and don’t exclude anybody? And I know you’ve done some think some thinking about this, so I’d love I’d love to hear your perspective on it. 

 

John Green: Yeah. No, it’s an important question. It’s as Paul Farmer used to say, it’s true that resources are limited, but they are less limited than they’ve ever been. And we over limit resources through the manner in which we allocate them, I think. But I do think that we need better, both in the U.S. and globally, better systems for incentivizing uh medical care in general. Right, Because right now. We have a system where there is no preferential option for the poor. The preferential option is always for the rich. And that feels so natural to us that we can’t even imagine a world where there would be a preferential option for the poor. Right now we have a world where it just doesn’t make any sense to us to develop TB drugs when we could develop statins. Again, not that statins aren’t important, they certainly are. And how we bring about a different world is partly through systemic change, it’s partly through regulation, it’s partly through switching up the incentives. And you’ve seen that a little bit like that’s why we have Bedaquiline, because there was a huge amount of public money that went into funding Bedaquiline and that’s what allowed Johnson and Johnson to make a killing on it, um literally. And I think that’s true for Cepheid and Danaher as well. Over $250 million dollars of public money went into the development of GeneXpert machines. And when that kind of public money goes into something, there should be agreements in place. There should be regulations in place that say when the public funds something or funds a significant portion of something, the public should receive something in return. The public should receive and return certain guarantees that the people for whom this is going to be most difficult to access will be able to access it. That’s in the interest of public health. It’s in the interest of global health. Nobody wants to live in a world where uh there is no cure for tuberculosis because we have allowed hundreds of millions of cases of tuberculosis in human beings to evolve resistance to more and more antibiotics. We don’t have to live in that world. We could live in a world where we search for cases. We treat the cases and we offer preventative therapy to their close contacts. And then we would live in a world without TB, you know, in a couple of decades, same way we– 

 

Dr. Abdul El-Sayed: Yeah. 

 

John Green: That’s basically what we did in the United States to live in a world with, you know, not entirely without TB, but mostly without TB. And so we could do that. We could do all those things. And I agree with you that we need to do all those things. But for kids like Henry, who are currently at [?], they can’t wait for that solution. And so we have to find a way to both and the solution. Yes, change the incentives. Yes, change the system and and fight like dogs for that. But in the meantime, Danaher and Cepheid have moral responsibilities to improve access. And the only way they’re going to live up to those responsibilities, in my experience and this isn’t just true for corporations like this is true for me too, man, I’m sure that you’ve been in the same position in your life. Like, how many times have you been in a position where somebody explained to you that you were wrong about something or that what you were doing was harmful and you were like, Oh, that sucks. And maybe you feel embarrassed, maybe you feel defensive, maybe maybe you feel frustrated. But then eventually you emerge from that experience saying, you know what, I probably was wrong. I probably wasn’t thinking enough about this or that or or this person or that person. You know, it’s so easy to demonize pharmaceutical companies or demonize companies like Danaher. And again, I think that their business practices are very dangerous and are very harmful in a lot of ways. I also think that the GeneXpert machine is amazing, and I’m glad that it’s here. And I think the people who work on it are good people who want to bring about a better world. I I don’t doubt their sincerity. Um. What I what I do question is whether their current model is really helping to do that and whether there is a way that that through polite but impassioned lobbying, we can help them understand that there might be a better way to do business. 

 

Dr. Abdul El-Sayed: Yeah, and I really admire um that. You know, you’ve thought through how to leverage your platform to do exactly that. One point here, though, and to sort of connect here. The challenge with the model that we’ve set up from a general citizen of the world standpoint as an American government. Right. And, you know, say what you will about any administration. We are the taxpayers. It is our government. And we have not demanded that our government, when we make investments in research and development for technologies that will either benefit our population or populations abroad. We haven’t made the demand forcefully enough that those technologies be affordable to the people who need them. And in the end, it is an economic question, but it is a governance and political question that allows that economic question free reign. And what I mean by that is this, when we make an investment as taxpayers through the NIH to fund the research and development of a geneXpert machine, on the back end of receiving that money ought to be an agreement about what the business model is going to look like and what the costs are going to look like. And the hard part is we live in a country where our government routinely spends billions of dollars of our taxpayer money to drop bombs on other people when we could very well be dropping lifesaving technology on other countries. And we choose not to do that thing. And that system of choices, that’s that’s us holding our government accountable and enforcing a kind of economics that that really, truly is just because, look, if you’re going to spend money on research and development, you’re going to own a patent. That I got no problem with that. What I do have a problem with is you leveraging your patent then to charge so much that people who need the thing won’t get it, especially when the part of the resources that went into that research and development you and I paid for. 

 

John Green: Right. 

 

Dr. Abdul El-Sayed: And our failure to look past the opacity that’s deliberately put up um and to ask why is it that we’re not doing this and what’s our role in the matter, I think is really important. And there has been a lot of movement. You look at, you know, GAVI and Gates and others, a lot of their sense is oh we can use these market driven approaches to you know buy this supply for the world. That’s what the plan was when it came to the COVID vaccines. And frankly, it’s failed miserably. And I think part of the reason it’s failed is because we assume the best intentions sometimes. And we trust, but we don’t verify. And I just think that, you know, the verification mechanism was always going to be government holding these companies accountable to the money that they took from us to generate a global public good and not profiteer so heavily that so many people didn’t get the thing that um that all of us invested in making sure was available. Right. 

 

John Green: Yeah. 

 

Dr. Abdul El-Sayed: And that almost makes it worse like if it’s available and not accessible, that’s like a worse situation than it not being available in the first place almost, right? 

 

John Green: Right. I mean, it’s yeah, that’s so true. And it reminds me of what Dr. Peter Mugyenyi said about um about HIV drugs in 2000 when he said, where are the drugs? The drugs are where the disease is not and where is the disease, the disease is where the drugs are not. And if we’re building systems that don’t get the drugs to where the disease is, then the drugs have minimal impact. Um. 

 

Dr. Abdul El-Sayed: Yeah. 

 

John Green: Maybe they impact the financial statements of Johnson and Johnson or the wealth of their shareholders, but like they don’t have the impact on human health that they could have. And you’re right, it’s a governance issue ultimately. But we have to do both at the same time. 

 

Dr. Abdul El-Sayed: Right. 

 

John Green: We have to expand access while working on governance. And I believe that’s possible because I’ve seen it be possible. I think there have been– 

 

Dr. Abdul El-Sayed: Well you’re doing it. 

 

John Green: I think there have been changes in governance over the last ten or 15 years. There need to be way more, um but that have reshaped things just to bring it back to when I had orbital cellulitis because I’m such a narcissist that I can only think about my own health. Um. I remember I was at NYU Hospital and the infectious disease doctor came in and he was like, man, this is a weird case. And I was like, thanks, but that’s that’s always the dream. You know, is that your doctor tells you that you’re you’re a weirdo. 

 

Dr. Abdul El-Sayed: Can I write you up as a case study? You’re like, No, [laughter] just heal me, man. I want to leave.

 

John Green: Yeah yeah just tell me what’s wrong. And he starts um he starts asking me, like, you’ve taken this antibiotic. I was like, Yeah, he said you’ve taken that antibiotic you’ve taking this, this yellow pill, that’s sort of oval. And I was like, Yeah, and this this red pill, that’s circular. And I was like, Yeah. And he was like, Have you taken a green pill that’s very large? And I was like, I don’t know, man. I’ve taken so many pills over the last six, eight months trying to get rid of this infection. And then he says um, have you have you taken a pill that costs $12,000 a pill? And I said, no, um you should have led with that, that that actually, whether it’s green is less relevant to me than the fact that it’s $12,000 a pill. And I remember he said, so listen, um you’re going to pay for this drug twice. You already paid for it to get made uh through your taxes and now you’re going to pay for it to cure your orbital cellulitis. And we shouldn’t live in a we shouldn’t live in a system where we pay for those drugs twice. 

 

Dr. Abdul El-Sayed: Yeah. [?]

 

John Green: And we certainly shouldn’t live in a system where we ask the poorest among us to pay for those drugs twice. 

 

Dr. Abdul El-Sayed: Hmm. I want to ask you, just switching tack here. You know, you’re building a community around fighting on these issues. And I know um that a lot of the the folks who operate under this business model are taking note of you called it a posse for T.B.. But, you know, as you said, all health is personal in some respects because, you know, even if you are privileged enough not to have to think about these things today, you don’t really know what your tomorrow was going to be. And, you know, I know your brother Hank uh was just diagnosed with Hodgkin’s lymphoma. We wish him a safe, speedy recovery. And I you know, again, the only thing I can do is just imagine what it would be like if my brother was was diagnosed with that kind of a disease. But I don’t I don’t host a public blog with my brother, a video blog with my brother that, you know, the whole point is that he and I are sharing conversation. But what’s it like just been having to watch your sibling go through that in a in a very public way? Um. And how has that allowed you to process it? How has it sort of shaped the the community that you’re a part of and the way that you think about what it’s like to be on the other side of suffering some of these diseases? 

 

John Green: Yeah. When you start making a video blog in 2007, when you’re in your twenties, you never think like, someday I’m going to have to come on here and talk about having cancer or my brother having cancer. And it’s it’s hard. It’s hard. I think it’s been hard for Hank. At the same time, the support has been really overwhelming and lovely, and people say that every time, but they say it because it matters. Um. Feeling supported, feeling unalone, feeling accompanied through something that’s so difficult really does matter. And there’s lots of evidence for that. You know, that that um that feeling alone in in that in those experiences, whether it’s because of stigma or social isolation or whatever compounds the difficulty of living through it. For us, I mean, I can’t speak for Hank. I don’t know what what his experience is like um but I will say the first thing he said to me, I mean, there were two weeks when we didn’t know what kind of cancer it was, but we knew it was cancer. And that was terrible. And I I um it was it was awful. Um. But when we found out it was Hodgkin’s, the first thing he said to me was 93% cure rate in the United States, 7% cure rate if you don’t get access to treatment. 

 

Dr. Abdul El-Sayed: Hmm. 

 

John Green: And so Hank’s focus was immediately on the fact that, you know, 70% of people who are going to die of cancer this year are going to die in low and middle income countries. A lot of those people are going to die as a result of poverty and lack of access to treatment because we have obviously, uh Hodgkin’s isn’t 100% curable, but a lot of people survive Hodgkin’s and very few people who can’t access treatment survive it. So, you know, he was he was able to see it in that context immediately. And and because he’s always been a sciencey guy, he was kind of able to see it through the lens of science and um and technology and and really share the story through that lens. Use it as an opportunity to talk about how we treat cancer and why we treat it that way. And I think that’s been helpful for a lot of people. You know, Hank’s my little brother, but I’ve always looked up to him, even when we were kids. He’s always been my my hero. I’ve always felt a little bit like the tail to his his comet. He’s so indefatigable. He’s so hard working. He’s so committed to his values. Um. Though it’s really hard to see him be fragile, uh be anxious, be scared. Never, never seen my brother like that. Never seen him take a nap, you know, not even when he was two. And so it’s it’s surreal, but at the same time. Um. I’m mostly just reminded of how much I I love him and how much everybody loves the people in their lives who are going through hard times. How much Henry’s mom loves Henry. How much love is the force in the world that holds it all together. And when we work from that ground, from that ground of of loving each other and believing that everybody is is deserving of loving and being loved, it’s pretty incredible what we can accomplish together. And that’s what I’ve tried to stay focused on. 

 

Dr. Abdul El-Sayed: Well, on that note, we deeply appreciate you um bringing that force to the broader world in in your leadership on the fight for tuberculosis in general, global health equity. Our guest today was John Green. He is a New York Times best selling author and one of the vlog brothers on YouTube. We really just really appreciate you joining us. And again, uh from all of us here at Crooked Media, we wish your brother a safe, speedy recovery and in general, good thoughts and prayers for your family. 

 

John Green: Thanks, man. I really appreciate it. It’s so great to be with you today. [music break]

 

Dr. Abdul El-Sayed, narrating: As usual. Here’s what I’m watching right now. As of late last week, the FDA and CDC have authorized and recommended a newly reformulated COVID vaccine for the fall. The vaccine has been updated for reactivity against the XBB strain, descendants of which are now accounting for the late summer, early fall increase in cases we’re now experiencing. Beyond that, though, new data demonstrates good reactivity against the BA.2.86 Pirola variant which was identified last month with more than 30 new mutations but has since failed to cause the bump in cases scientists had feared. This new vaccine is recommended for everyone over the age of six months and will begin rolling out all over the country this week. Get yours. I’ll be getting mine. But when it comes to actually getting them, I’m worried about two hurdles. The first is just apathy on the part of the average American. Only about 20% of eligible Americans ended up getting their bivalent booster when it was rolled out. And I worry that the proportion who’ll be considering getting this one is even lower. It’s critical that we get the word out. COVID is still with us. People are still getting hospitalized and dying and we still need to worry about this. The second, though, is the haphazard and disjunct approach to paying for it. During the pandemic era of the disease, the U.S. government did something quite profound, at least by U.S. terms. It offered everyone a government bought and subsidized health care product that was free at the point of care. There’s literally nothing like that in our history, and that meant that anyone could get the vaccine anywhere it was offered. But that ended with the pandemic declaration. Now we’ve got a hodgepodge. For Americans on Medicaid or Medicare, they can largely get their vaccine wherever it’s offered. That remains true. But for uninsured Americans, they’ll have to rely on public provisions such as local health departments, who ironically will struggle to give insured Americans vaccines because, well, the government won’t allow them to buy private supplies without first putting up the money. Instead, people with private insurance will be encouraged to go to their primary care provider or local pharmacy where uninsured people can’t get it. So where can you get your vaccine? It really depends. And that’s a real problem for the vaccination campaign. Meanwhile, it’s cold and flu season and many of us will be turning to our usual cold and flu meds to help us get through it. Well, kind of. 

 

[clip of unspecified news reporter] It is a key ingredient in many popular over-the-counter medicines like Sudafed PE, DayQuil and NyQuil severe, phenylephrine or PE. But a growing body of evidence claims PE doesn’t work as a decongestant when taken orally. 

 

Dr. Abdul El-Sayed, narrating: An FDA advisory panel voted unanimously that phenylephrine, a drug that is ubiquitous in over-the-counter decongestants and has been approved by the FDA for nearly half a century is simply ineffective when delivered orally. The drug is a close relative to epinephrine, otherwise known as adrenaline, which has the effect of constricting blood vessels in your nose. That should make sense, considering that this is the fight or flight hormone and leaking from the nose isn’t right when you’re fighting or fleeing. The problem is that when you take it orally, the molecule gets destroyed by your stomach acids, which means that very little, if any, of it gets into your blood. Critically, the FDA panel only recommended a course reversal on the oral form. There’s good evidence that when the drug is squirted directly into the nose, it’s quite effective. And the other thing you need to know is that while the drug may not be effective, it’s still considered safe. So you don’t have to empty your medicine cabinets. It’s just one of the key ingredients that doesn’t really help. The advisory panel vote isn’t a firm ruling, so nothing will change immediately. But the FDA is likely to follow the recommendation moving forward. Finally, U.S. blood supplies are down 25% since the summer, which the Red Cross is blaming on climate related disasters. The issue is ultimately one of blood donations. It should be obvious that people are just less likely to donate in heat waves or during hurricane season or when there are wildfires barreling down on their communities. With more of these happening more regularly. It’s become difficult for the Red Cross, which is responsible for stocking hospitals and surgical centers around the country with much needed blood products. That’s it for today. On your way out. Don’t forget to rate and review. It really does go a long way. Also, if you love the show and want to rep us, do drop by the Crooked store for some America Dissected merch. [music break] America Dissected is a product of Crooked Media. Our producer is Austin Fisher, our associate producers are Tara Terpstra and Emma Illick-Frank. Vasilis Fotopoulos mixes and masters the show. Production support from Ari Schwartz. Our theme song is by Taka Yasuzawa and Alex Suigura. Our executive producers are Leo Duran, Sarah Geismer, Michael Martinez and me. Dr. Abdul El-Sayed, your host. Thanks for listening. [music break] This show is for general information and entertainment purposes only. It’s not intended to provide specific health care or medical advice and should not be construed as providing health care or medical advice. Please consult your physician with any questions related to your own health. The views expressed in this podcast reflect those of the host and his guests and do not necessarily represent the view and opinion of Wayne County, Michigan, or its Department of Health, Human and Veterans Services.