Hi everyone, It's Pierre here and I've got something special for you today. Many of you have seen that last week we dropped a trailer into our feed. It's about a new show launching at Bloomberg. It's called Prognosis, and it's all about the incredible innovation that's happening in health and in medicine. And this week we're going to play you an episode from that show. So I'm here with Kristen Brown, our dynamite reporter, who is bringing you this
week's story. Some of you might actually recognize Kristen's voice because a few weeks ago she was right here with us on Decrypted with a story about how our DNA is helping to solve cold murder cases. Hey Kristen, Hey, So the episode that you're bringing us this week is about bio hacking, which is essentially d I Y science. For some bio hackers. D i Y means experimenting on yourself for experimenting on animals, but either way, it's happening
outside of a traditional lab setting. Right. Bio hackers are kind of like the hacker punk of the science world. They don't really worry about rules or regulations governing science of medicine because those rules just weren't really designed to oversee loan self taught scientists in a garage. Yeah, when I think about bio hackers, what often comes to mind the guys who put chips under their skin. But a lot of bio hackers are also working to make cheaper
remedies and to make drugs more widely available. And that's what you're looking at this week. A lot of those remedies, once they are available, are just not affordable. So I guess you could say it's maybe a noble cause trying to democratize treatment. But I wonder what do scientists with PhDs think about bio hackers. Has this community produced any significant breakthroughs? Not really, but we are starting to see
biohacking expand beyond sort of hardcore hacker types. Biohacking definitely has an appeal to patients who are dealing with a terminal diagnosis like cancer. We've run out of other options. You'll hear from a Norwegian couple an episode who are in that situation, and so what's do I having? That? Is it? The tech is becoming cheaper and more easily available. Yeah,
that's definitely a big part of it. I mean, you can now buy some of these really advanced machines on eBay for a few hundred dollars from labs they're discarding them, so there's access to the technology. The technology and the scientific techniques have also just gotten a lot simpler, you know, easier to do if you don't have a PhD. And I think part of this is also people are just fed up with our health care system. So what are some of the medical conditions that these bio hackers are
looking at. Well, they have some pretty lofty goals, but so far, a lot of the bio hackers I know are looking at treatments that could help them get buffer, like the frogs were about to hear about. So with that, let's play everyone the episode. I really hope you enjoy listening to this as much as I have, And if you like what you here, please head to your nearest podcast app and subscribe to Prognosis. The season is just getting started and there are a lot of excellent episodes
in the pipeline. Prognosis is going to have new episodes out every Monday, and I'll see you guys next week when we're back on Tuesday with Decrypto listeners, beware, Later in this podcast we'll be sticking a needle in a little green frog. We'll also report on people conducting experiments on themselves. We are not advocating you try any of this at home. Right right than What if the tools of modern science were so accessible that you could cure
yourself of your own disease? Welcome to Prognosis, the podcast about health, medical technology, and the mind blowing innovation now underway in some of the least expected places. I'm your post Michelle fay Cortes. Today we're taking a peek into the world of biohacking, where self taught scientists are experimenting with glow in the dark, beer, insulin producing yeast, and
even do it yourself cures for cancer. There's a history of scientific innovations shrinking from big, expensive and inaccessible to personalized and widely used. Just look at computers in the nineteen seventies. They took up entire rooms and pretty much only professionals had access to them. Now millions of people carry pocket sized computers also known as smartphones, everywhere. A growing contingent of self taught scientists called biohackers, believe that
healthcare may be following a very similar path. Things like say, genetic engineering are still the territory of experts, scientists and universities, pharmaceutical companies, and the government, but so called biohackers are beginning to experiment a home. So far, all this community of d I wires has accomplished is a whole bunch
of veiled experiments. There's a guy in Mississippi that's been trying to make bioluminescent puppies for years, no glowing dogs yet, and others trying to engineer himself to grow bigger muscles without having to spend hours at the gym. He's no more buff than he was when he started. Probably the most spectacular failure yet was last February at a conference, the CEO of a bootstrapped bio hacker startup got up
on stage and announced that he had herpes. Then he stripped down to his boxers and injected himself with the gene therapy cure that was almost certain to not work. But these determined bio hackers are growing in number and in experience. They're sharing ideas online and off about ways to make science and medicine more accessible to regular folks.
They prophesies one day, just like I carry around a computer in my pocket, I might have the tools in my kitchen to concoct a cure tailored to my own genetics. Here's Bloomberg's health reporter Kristin Brown with the story. Recently, I found myself in a West Oakland duplex watching as a sedated tree frog got a genetic cocktail injected into its left leg. Hold it like that, remember, and hold his leg down and just go into the muscle like that. Object conto. You see it swell a little bit from
the fluid, So you're just injecting one leg. The goal was to make the frog's muscles grow bigger than usual, to make the frog get well ripped. To do this, the frog was getting an injection of a d N, a mixture containing a gene called full of statin, which seems to play a role in sustle gross So the fullest TOATN is the is it likely that it would just change the one leg or that it would be
possible body. No, it's possible both right. Because they're so small, it can get into the blood stream really easy, So it's likely that it can change the whole body. That's our measuring weight, but also when you inject into the muscle, it should affect that muscle the most. We're looking at that muscle to see how that muscle changes, you know, getting multiple measurements to see what he's done. This guy, the mad scientist behind this whole experiment, is Josiah Zaner.
I first met Josiah a few years back. He had just left a job at NASA to start a company called the Odin, selling cheap science supplies over the Internet to d I Y bio enthusiasts. Now, Josiah is sort of a famous science stumpman. He rose to fame after a talkie gave last year at a biotech conference for pockatively titled A step by step Guide to Genetically Modifying Yourself with Crisper. Crisper is a much buzzed about gene editing technology which allows scientists to cut and paste tiny
bits of DNA. To demonstrate how Crisper might work in a human he injected himself with Crisper right in front of the audience. I was actually there, and it was pretty crazy. Crisper had never been used in humans before in the US, and it certainly hadn't been directly injected into anybody's body. The stick inspired some copycats, like that CEO Michelle mentioned who injected himself with a harpies vaccine on stage. It also caught the attention of the Food
and Drug Administration. The f d A didn't really like that Josiah was selling kits too would be bio hackers online. Josiah wanted to usher in a d i y science revolution by making science seem accessible and edgy, but his tactics had sort of backfired. You know. At first, I thought, well, the way we could do this is let's just like self experimentation. And I tried that and it did not turn out like I imagined it. So then all right, let's change, let's try something else. He didn't just want
to grab headlines. He wanted to help people and to teach people how to do science so that one day maybe they could help themselves. So last summer, Josiah sent me a message on Facebook asking me if I had any interest in learning how to genetically engineer frogs. Josie's mind, teaching people to experiment on animals was one step closer to teaching people how to experiment on themselves, which brings us to August Christian. Hello, come on in, how's it going.
That's Esther, one of the Owen's employees. Where are the frogs? Hey here? Oh my gosh, they're so cute. Oh my gosh, take a look at these lines. These are super adorable. Oh my god, they're just sprouted LIGs a grouping the table. The Odin's headquarters looks a little like a science frat, live stream video games playing the background. The fridge is stocked with red Bull and Caprice Son, and right now the headquarters is filled with dozens and dozens of tree frogs,
all in various stages of development. These ones have already been experimented on, so we keep them over here. And these ones have yet to be experimented or anything on, so we keep them. What kind of frogs are they again? So they're green tree frogs. It's high less scen area. They're just like really inexpensive, kind of cool. They look nice and really common, so that's why we chose them. But Josiah's dream is a lot bigger than buff amphibians.
Within the d I y bio community, there's a lot of hope that making cutting edge science more accessible will eventually also make medicine cheaper and more accessible. Take insulin. It's only manufactured by a few pharmaceutical companies and it's really expensive, but for millions of people, it's also a life saving medication. So one collective of bio hackers, based out of a community bio lab in Oakland, has been
working to engineer yeast so that it produces insulin. The idea is to eventually develop a safe and FDA approved method to either allow people to make their own medicine or at least provided to diabetics for very cheap Josiah's first big d i Y experiment was health related to Since his teen years, he had been plagued by digestive issues. He had tried treatment after treatment, but nothing seemed to work, so it took matters into his own hands. In six
he gave himself a fecal transplant. Yes, that is exactly what it sounds like, and he led a reporter write about it. After that, email started pouring in from other people who were sick and either frustrated with doctors or out of options. They'd read stories about things like Crisper and the News and all its promise of simply snipping away the disease causing letters and a since genetic code. They wanted to know whether there might be a d I Y fix for them too. Here's where the frogs
come in. You can't be afraid of grabbing them too tight. They're they're pretty robust. You you won't. Actually, you gotta like corn them against the wall and just grab them. I don't want to hurt you won't. You won't. Don't worry. Oh my god, they're really get them all right, go in. Oh my god. It's like literally the hardest part of the whole Jusi experimented on himself to hopefully open people's
eyes to the promise of d I Y science. But he realized that if you're going to teach people how to make a gene therapy for themselves, first you have to teach them how to test it out, in this case on frogs. To be honest, I found the whole thing pretty creepy. Before injecting the frogs with anything, Josiah knocks them out. They look limp, like they're dead. They seem like they're slowing down. Does it work like that? Does it make them slow down? First? Yep? It's taking
in aesthetic right, So we definitely they're still going. Sell of them go a different piyeh. One of them looks like he's down already. Over the past few years, genetic engineering has gotten a lot easier. Jose I actually does have a PhD, but you don't need one to get your hands on things like DNA. Jose I ordered the fullest at in DNA off the Internet, along with everything else for the experiment, and had it shipped to the office. Then he just mixes it all up in his lab.
So you put the DNA in these tubes. There's four of them, word for each frog, and now you're adding a polymer that will help getting into the frog. And then what's next next is too way and conject them
way in measuring injection. There's a long history of self experimentation in science, and not just in the days before being a scientist required getting a PhD. Nobel Prize winner Barry James Marshall ingested a type of bacteria to successfully demonstrate its role in causing ulcers sometimes though it wasn't so successful. Way back in the nine twenties, Russian physician Alexander Bogdanov performed multiple blood transfusions on himself he wanted
to test whether the procedure might bring him eternal youth. Instead, it killed him. But Josiah doesn't just imagine a world where such self experimentation is done by the brave and the daring. He wants a world we're whipping up a d i Y gene therapy no longer seems daring at all, considering where the science is now. That is a pretty radical vision. True. Modern day genetics have made curing many ones in curable diseases team for the first time realistic.
One gene therapy Externa, approved last year, treats the form of inherited blindness, but most therapies are still highly experimental and the abilities of the technology are still really limited. I've talked with a lot of other people on science and medicine about Josiah's work, and most of them are pretty skeptical. But if you or your loved one is sick, Josia's vision is a pretty compelling one, no matter how
dubious it sounds. That's exactly how Laura's Staurus felt when his wife Diane was diagnosed with stage four lung cancer, and she was only thirty years old and had never spoked No one knows why she got the disease at such a young age, but it seemed genetics may have played a role. The pro bolt is very very poor, and we at the beginning we were just told there
is there's not any hope. You can perhaps delayed an inevitable a little bit, but not much, and there's really no hope and no point in trying to tell too much against it. It's better to just enjoy your last days together and then that's going to be it. But Lars did not give up. Instead, he scoured the world and the Internet for promising treatments. He eventually stumbled upon a professor in Germany involved in an experimental personalized PEP
died vaccine project and experimental immunotherapy. Lars and Diane live in Norway, so Germany isn't all that far. Immunotherapy is hot, and for good reason. The medical literature is filled with tales of tumors suddenly shrinking to nothing and terminal illnesses miraculously reversing. Course. It's a very interesting and scientifically intriguing way of attacking cancer cells. Uh, and definitely still unproven and of course even more unproven two years uh. Two
years ago when she started this. But we hope and believe that this can be helpful against their cancer, but there's certainly no proof that it will be. Diane was traveling to Germany every two weeks for treatment, as well as adding new things for her treatment regimen when they seemed promising. Somewhere along the way, a friend Saint law Is an article about Josiah, so Laura's reached out curious about whether a d I Y crisper treatment might work
for Diane. Josiah told him it probably wouldn't, but the two out of talking it led to a plan to make cancer immunotherapy more accessible by making a d I Y. Laura's had a blog where he detailed all of the different treatments that Diane was trying out. Like Josiah, patients often reached out to Lara's after reading it. It was impossible to tell whether any of Diane's experimental treatments were actually working, but she was at least still alive and
doing well. And then people are reaching out and they asked if they could perhaps to try the same thing, But then some people didn't have the necessary fun thing to do it, and all the people who are perhaps precluded from probably every second week to Germany. So so then the quest and well, you know all the other ways that people can get this type of treatment without traveling every second second week to Germany and without spending
the small fortune. We have done it. It's a large start of Facebook group called d I Y Cancer Vaccines. On Facebook, people with the same diagnosis as Dane could discuss their treatment, along with the possibility of making a cancer immunotherapy themselves. The idea of making an immunotherapy wasn't completely impossible. For a few thousand dollars, anyone can contract a lab to manufacture a targeted peptide like Dianes. Everything else can be found at a local pharmacy or online.
It's promising, but these immunotherapies are also highly experimental. There was a chance that they could result in devastating side effects or just altogether not work. Not to mention, it would be extraordinarily expensive to d I y a vaccine that targeted as many mutations as Dianes did. That would make the chances of it working even slimmer. Still, as a Facebook community grew, a few people decided to try
out making the vaccine themselves. One fell in Norwegian tried her homebrew vaccine on her husband, who would run out of options after his cancer had spread to his brain. It didn't work, but Lars was inspired. Last year, with help from Josiah, he published an online guide for how to make an immunotherapy targeting a single mutation in a
councers tumor. I think it'll The individual steps by themselves are not fully difficult, but there is a hard life think both in comprehension like do you understand enough to actually dare to do it and of course implementing it. The practical steps, some of them are not so difficult,
some of them are a little bit more tricky. But I think if you are a reasonably well informed person and you have the time I think in particular this time, and the willingness and the energy to try to get into this, I think I think many people will be able to do it. The Internet has galvanized patients with all sorts of conditions to take a more hands on approach to their care. For example, there's a website where people with Crowns disease can share what treatments have worked
for them and what has it. It's sort of like a patient powered Research Network, another site Patients like Me, connects people with all kinds of ailments. It's clear that patients are ready to take a more active role in their care. Perhaps this is just the next step. The risks Laura's says seem far less daring when you're out of options for survival. So I think it's like a small step in a direction to help show people that
something could be possible. Hank Greely, a bioethosist at Stanford and a frequent critic of Josiah's, told me he's doubtful anything as significant as a cancer treatment will come from someone's homebrew biolab. I could imagine somebody taking a rare genetic condition and showing that in a Petrie dish they can successfully use Crisper too to reverse an unfavorable mutation in a disease that, for whatever reason, biotech and pharma
haven't explored. But making the jump from a cell line and a Petrie dish, which I think bio hackers might be able to do, to a drug and a human is such an enormous jump that I think bio hackers are likely to play only the smallest of roles in that. Hank isn't all that concerned about Josiah's frog experiments, but he is concerned about what it might lead to. Josiah's public experimentation has already led to copycats. No one has
gotten hurt yet, but they certainly could. That CEO who injected himself with a Harpies treama on stage did it without ever testing the treatment and humans first. A few months later, he drowned, So it's impossible to say how things might have worked out. But who knows what might happen when you introduce a foreign substance in to the
endlessly complex human body. That day that I visited Josi's lab, he was planning to inject four frogs with full stanton and four other frogs, the control frogs with the placebo. It was the first phase of a new experiment. Basically, all you're doing is you're injecting a liquid and that's it. Like it's that simple, And I don't think people understand that that, Like it's literally that simple you're injecting. He'd already gotten good results in one previous experiment. Injecting the
frogs with a different gene also meant stimulating growth. Yeah, so here's a video that I took. We'll try to show you the frogs. Actually, this guy is bigger. No, that's what Esther was talking about. We call him thick Boy because it's our frog that grew like way bigger than all the other frogs from the gene therapy. Thick Boy sick with two cs. It's such an easy experiment to do, right because there's an obvious way to tell
if it's working. You can weigh the frogs to see and if they get big enough you can tell buy I Josiah is selling kids to perform these experiments online for two that's including six frogs. His hope is that it teaches people how fun and simple science can be, and just maybe that one day, performing such experiments on frogs might empower people to take their health into their own hands. The one thing that's important to notice that
these genes are human genes, they're not frog gains. So theoretically, you know, it's testing like a gene therapy that would be used in a human but it might not be as easy as Josiah insists. Here's Hank Greeley again. I think this idea of having a hobby in science is a good one in and of itself for the people involved. I think there is some chance that they can do
some scientific benefit, which would be good. Um. I do think that development of human drugs and biological products is not what they should be focusing on, because I think their likelihood of contributing significantly, at least in any very direct way to that is very low. Josiah likes to say things like, the only thing in the way of creating cheap d I Y cures is enough people with the knowledge to do it and the market to pay for it. Take look start off, that's the eight fifty
thou dollar gene therapy that treats blindness. Josiah is pretty sure he could order stuff off the internet and make it for five dollars. Another time he told me he could make dragons if there were only enough people to pay for it. According to Josiah, it's all about market demand.
That's why you's so provocative. I interact with a lot of people who have cancer, and a lot of people who of different types of cancers that they have no treatment for, and they're just trying to stay alive and survive. But when it's their choice between dying and trying something, most people try something well, if they could try it, if they already had a system of platform, an organism that's been set up which they could test these things on before they try it themselves, so that risk of
dying is less. Like that's a I think a really cool thing. Josie's approach is extreme, but it's rooted in a concern sharred well beyond bio hackers. Treatments sometimes take decades to make it from petri dish to patient if it turns out that is lucrative enough to pursue a treatment at all, And when a treatment does make it to market, many people can't afford it. Like my dream is to get people to be able to genetically modify themselves,
but it's also to uh. I don't want to say, like take down the f DA, but figure out a new model that works right because right now there are ton of people dying and suffering that don't have access to the drugs they need because of the regulations of time, the money, I mean everything with the f d A. Potty Zetlery used to be an attorney at the f d A. Now she's a law professor who studies bio hackers,
among other things. She told me that self experimentation or experimenting on frogs might not be enough to warrant a crackdown from the agency, but it also isn't necessarily the best way to help people. So from a public health perspective, if what we care about is helping people and helping a lot of people, there are lots of things that are pretty low tech and not very sexy that we
know work. So there are areas of the country that don't even have clean water, right, so giving clean water to people in Flint, Michigan and other areas that would be a huge public health benefit. That isn't as sexy as genetically engineering yourself, um, but it's something we know would work, and I I'm very interested in this area. Animals prone as anyone to think this is a really exciting thing that jose I is doing, But they're just all these other things we know that help people on
a large scale. Back into eyes Lab, I got a good taste of how easy it is for things to go wrong when you do it yourself after instructing me in syringe technique. So cut your thumb down there on the bottom right, so then you have some pressure, right, because if you push on the back when you try to push in and you push all the but then how do I push it in? He asked me if I wanted to give injecting the frogs that try myself. I'm one of those kids who asked to be excused
from dissecting frogs in high school. Biout, So I declined, and I'm glad I did because then this happened. Oh my god, he's like breathing really hard. Actually, I think I might have got the vein on that one accidentally. What do you do if he's bleeding nothing hopefully in heels and he's I think that's just starting to breathe again. We're starting to be able to see. No, probably not well. According to Josi Am the frog did survive, and that's
it for this week's prognosis. Thanks for listening. Do you have a story about healthcare in the US or around the world. We want to hear from you. You can email me at m Portes at Bloomberg dot net or find me on Twitter at a Portes. If you were a fan of this episode, please take a moment to rate and review us. It'll help new listeners find the show. This episode was produced by Liz Smith are Ori editor was Rick Shein. Thanks to Drew Armstrong, Francesco Levi's had
a Bloomberg podcast. We'll see you next week.