1 00:00:01,080 --> 00:00:04,520 Speaker 1: Listeners, beware, Later in this podcast we'll be sticking a 2 00:00:04,600 --> 00:00:07,760 Speaker 1: needle in a little green frog. We'll also report on 3 00:00:07,800 --> 00:00:11,920 Speaker 1: people conducting experiments on themselves. We are not advocating you 4 00:00:12,000 --> 00:00:19,320 Speaker 1: try any of this at home. Right right, right right. 5 00:00:25,600 --> 00:00:29,200 Speaker 1: What if the tools of modern science were so accessible 6 00:00:29,480 --> 00:00:35,320 Speaker 1: that you could cure yourself of your own disease? Welcome 7 00:00:35,320 --> 00:00:40,199 Speaker 1: to Prognosis, a podcast about health, medical technology, and the 8 00:00:40,280 --> 00:00:43,520 Speaker 1: mind blowing innovation now underway in some of the least 9 00:00:43,640 --> 00:00:48,919 Speaker 1: expected places. I'm your host, Michelle fay Cortes. Today we're 10 00:00:48,920 --> 00:00:51,800 Speaker 1: taking a peek into the world of bio hacking, where 11 00:00:51,840 --> 00:00:55,240 Speaker 1: self taught scientists are experimenting with glow in the dark, beer, 12 00:00:55,800 --> 00:00:59,880 Speaker 1: insulin producing yeast, and even do it yourself cures for cancer. 13 00:01:05,040 --> 00:01:08,680 Speaker 1: There's a history of scientific innovations shrinking from big, expensive 14 00:01:08,720 --> 00:01:12,960 Speaker 1: and inaccessible to personalized and widely used. Just look at 15 00:01:12,959 --> 00:01:16,560 Speaker 1: computers in the nineteen seventies. They took up entire rooms 16 00:01:16,880 --> 00:01:20,039 Speaker 1: and pretty much only professionals had access to them. Now 17 00:01:20,200 --> 00:01:24,759 Speaker 1: millions of people carry pocket sized computers also known as smartphones, everywhere. 18 00:01:25,280 --> 00:01:29,040 Speaker 1: A growing contingent of self taught scientists, called biohackers, believe 19 00:01:29,080 --> 00:01:33,119 Speaker 1: that healthcare may be following a very similar path. Things 20 00:01:33,160 --> 00:01:37,080 Speaker 1: like say, genetic engineering are still the territory of experts, 21 00:01:37,400 --> 00:01:41,640 Speaker 1: scientists and universities, pharmaceutical companies, and the government, but so 22 00:01:41,760 --> 00:01:45,399 Speaker 1: called biohackers are beginning to experiment a home. So far, 23 00:01:45,480 --> 00:01:48,000 Speaker 1: all this community of d I wires has accomplished is 24 00:01:48,040 --> 00:01:51,560 Speaker 1: a whole bunch of veiled experiments. There's a guy in 25 00:01:51,600 --> 00:01:56,320 Speaker 1: Mississippi that's been trying to make bioluminescent puppies for years. 26 00:01:56,840 --> 00:01:59,880 Speaker 1: No glowing dogs yet, and others trying to engineer him 27 00:02:00,000 --> 00:02:02,960 Speaker 1: help to grow bigger muscles without having to spend hours 28 00:02:03,000 --> 00:02:05,440 Speaker 1: at the gym. He's no more buff than he was 29 00:02:05,480 --> 00:02:09,600 Speaker 1: when he started. Probably the most spectacular failure yet was 30 00:02:09,720 --> 00:02:13,520 Speaker 1: last February at a conference, the CEO of a bootstrapped 31 00:02:13,520 --> 00:02:17,000 Speaker 1: bio hacker startup got up on stage and announced that 32 00:02:17,040 --> 00:02:20,160 Speaker 1: he had herpes. Then he stripped down to his boxers 33 00:02:20,200 --> 00:02:22,840 Speaker 1: and injected himself with the gene therapy cure that was 34 00:02:22,880 --> 00:02:27,120 Speaker 1: almost certain to not work. But these determined bio hackers 35 00:02:27,160 --> 00:02:31,320 Speaker 1: are growing in number and in experience. They're sharing ideas 36 00:02:31,400 --> 00:02:34,440 Speaker 1: online and off about ways to make science and medicine 37 00:02:34,480 --> 00:02:39,360 Speaker 1: more accessible to regular folks. They prophesies one day, Just 38 00:02:39,440 --> 00:02:42,000 Speaker 1: like I carry around a computer in my pocket, I 39 00:02:42,080 --> 00:02:44,239 Speaker 1: might have the tools in my kitchen to concoct to 40 00:02:44,320 --> 00:02:48,480 Speaker 1: cure tailored to my own genetics. Here's Bloomberg's health reporter 41 00:02:48,600 --> 00:03:02,360 Speaker 1: Kristin Brown with the story. Recently, I found myself in 42 00:03:02,360 --> 00:03:06,239 Speaker 1: a West Oakland duplex watching as a sedated tree frog 43 00:03:06,400 --> 00:03:12,200 Speaker 1: got a genetic cocktail injected into its left leg. Hold 44 00:03:12,240 --> 00:03:17,600 Speaker 1: it like that, remember, and hold his leg down and 45 00:03:17,880 --> 00:03:23,120 Speaker 1: just go into the muscle like that. Inject into the 46 00:03:23,200 --> 00:03:26,200 Speaker 1: leg and see its swell a little bit from the fluid. 47 00:03:27,280 --> 00:03:32,920 Speaker 1: So you're just injecting one leg. The goal was to 48 00:03:32,919 --> 00:03:35,600 Speaker 1: make the frog's muscles grow bigger than usual, to make 49 00:03:35,600 --> 00:03:39,600 Speaker 1: the frog get well ripped. To do this, the frog 50 00:03:39,720 --> 00:03:41,800 Speaker 1: was getting an injection of a d N a mixture 51 00:03:41,960 --> 00:03:45,000 Speaker 1: containing a gene called full of statin, which seems to 52 00:03:45,000 --> 00:03:49,320 Speaker 1: play a role in muscle gross So the full of 53 00:03:49,400 --> 00:03:52,800 Speaker 1: statin is it Is it likely that it would just 54 00:03:52,960 --> 00:03:56,600 Speaker 1: change the one leg or that it would be It's 55 00:03:56,600 --> 00:04:00,120 Speaker 1: possible both right, Because they're so small, it can get 56 00:04:00,160 --> 00:04:01,880 Speaker 1: into the blood stream really easy, so it's likely that 57 00:04:01,880 --> 00:04:03,920 Speaker 1: it can change the whole body. That's our measuring weight. 58 00:04:04,520 --> 00:04:07,600 Speaker 1: But Also, when you inject into the muscle, it should 59 00:04:07,600 --> 00:04:09,880 Speaker 1: affect that muscle the most. So we're looking at that 60 00:04:10,000 --> 00:04:12,800 Speaker 1: muscle to see how that muscle changes, you know, getting 61 00:04:13,200 --> 00:04:17,800 Speaker 1: multiple measurements to see what he's done. This guy better. 62 00:04:21,920 --> 00:04:25,520 Speaker 1: The mad scientist behind this whole experiment is Josiah Zaner. 63 00:04:27,240 --> 00:04:29,440 Speaker 1: I first met Josiah a few years back. He had 64 00:04:29,480 --> 00:04:31,719 Speaker 1: just left a job at NASA to start a company 65 00:04:31,760 --> 00:04:35,120 Speaker 1: called the Odin, selling cheap science supplies over the Internet 66 00:04:35,200 --> 00:04:40,080 Speaker 1: to d I Y bio enthusiasts. Now, Josiah is sort 67 00:04:40,120 --> 00:04:43,000 Speaker 1: of a famous science stumpman. He rose to fame after 68 00:04:43,080 --> 00:04:46,280 Speaker 1: a talkie gave last year at a biotech conference provocatively 69 00:04:46,360 --> 00:04:50,200 Speaker 1: titled A step by step Guide to Genetically Modifying Yourself 70 00:04:50,279 --> 00:04:53,840 Speaker 1: with Crisper. Crisper is a much buzzed about gene editing 71 00:04:53,880 --> 00:04:57,240 Speaker 1: technology which allows scientists to cut and paste tiny bits 72 00:04:57,240 --> 00:05:00,280 Speaker 1: of DNA. To demonstrate how Crisper might are going to 73 00:05:00,440 --> 00:05:04,400 Speaker 1: human he injected himself with Crisper right in front of 74 00:05:04,440 --> 00:05:08,560 Speaker 1: the audience. I was actually there, and it was pretty crazy. 75 00:05:08,760 --> 00:05:11,440 Speaker 1: Crisper had never been used in humans before in the US, 76 00:05:11,640 --> 00:05:16,560 Speaker 1: and it certainly hadn't been directly injected into anybody's body. 77 00:05:17,160 --> 00:05:21,719 Speaker 1: The stick inspired some copycats, like that CEO Michelle mentioned 78 00:05:21,720 --> 00:05:25,000 Speaker 1: who injected himself with a harpies vaccine on stage. It 79 00:05:25,160 --> 00:05:28,040 Speaker 1: also caught the attention of the Food and Drug Administration. 80 00:05:28,680 --> 00:05:30,880 Speaker 1: The f d A didn't really like that Josiah was 81 00:05:30,920 --> 00:05:34,440 Speaker 1: selling kids to would be bio hackers online. Jose I 82 00:05:34,600 --> 00:05:37,000 Speaker 1: wanted to usher in a d I y science revolution 83 00:05:37,120 --> 00:05:41,239 Speaker 1: by making science seem accessible and edgy, but his tactics 84 00:05:41,279 --> 00:05:45,000 Speaker 1: had sort of backfired. You know. At first, I thought, well, 85 00:05:45,080 --> 00:05:46,720 Speaker 1: the way we could do this is let's just like 86 00:05:47,760 --> 00:05:51,080 Speaker 1: self experimentation. And I tried that and it did not 87 00:05:51,200 --> 00:05:54,120 Speaker 1: turn out like I imagined it. So then all right, 88 00:05:54,200 --> 00:05:57,040 Speaker 1: let's change, let's try something else. He didn't just want 89 00:05:57,080 --> 00:06:00,520 Speaker 1: to grab headlines. He wanted to help people and to 90 00:06:00,560 --> 00:06:02,800 Speaker 1: teach people how to do science so that one day 91 00:06:02,839 --> 00:06:06,840 Speaker 1: maybe they could help themselves. So last summer, Josiah sent 92 00:06:06,880 --> 00:06:09,240 Speaker 1: me a message on Facebook asking me if I had 93 00:06:09,279 --> 00:06:14,240 Speaker 1: any interest in learning how to genetically engineer frogs. Josie's mind, 94 00:06:14,400 --> 00:06:17,440 Speaker 1: teaching people to experiment on animals was one step closer 95 00:06:17,560 --> 00:06:21,640 Speaker 1: to teaching people how to experiment on themselves, which brings 96 00:06:21,720 --> 00:06:26,560 Speaker 1: us to August Christ Hello come on in. How's it going. 97 00:06:27,040 --> 00:06:31,080 Speaker 1: That's Esther, one of the Odin's employees. Where are the frogs? 98 00:06:31,440 --> 00:06:37,760 Speaker 1: Hey here? Oh my gosh, they're so cute. Oh my gosh, 99 00:06:37,800 --> 00:06:40,760 Speaker 1: take a look at these ones. These are super adorable. 100 00:06:43,040 --> 00:06:49,680 Speaker 1: God just sprouted LIGs. The Odin's headquarters looks a little 101 00:06:49,720 --> 00:06:52,960 Speaker 1: like a science e frat live stream video games playing 102 00:06:53,000 --> 00:06:56,240 Speaker 1: the background. The fridges stocked with red bull and capri son, 103 00:06:56,920 --> 00:07:00,080 Speaker 1: and right now the headquarters is filled with dozens and 104 00:07:00,200 --> 00:07:03,760 Speaker 1: dozens of tree frogs, all in various stages of development. 105 00:07:04,200 --> 00:07:07,280 Speaker 1: You're the ones have already been experimented on, so we 106 00:07:07,440 --> 00:07:09,640 Speaker 1: keep them over here, And these ones have yet to 107 00:07:09,680 --> 00:07:13,360 Speaker 1: be experimented or anything on, so we keep them. What 108 00:07:13,520 --> 00:07:16,200 Speaker 1: kind of frogs are they again? So they're green tree frogs. 109 00:07:16,240 --> 00:07:21,440 Speaker 1: It's high less scen area. They're just like really inexpensive 110 00:07:21,560 --> 00:07:25,240 Speaker 1: kind of cool. They look nice and really common, so 111 00:07:25,400 --> 00:07:28,840 Speaker 1: that's why we chose them. But Josiah's dream is a 112 00:07:28,880 --> 00:07:33,480 Speaker 1: lot bigger than buff amphibians. Within the d i Y biocommunity, 113 00:07:33,560 --> 00:07:35,920 Speaker 1: there's a lot of hope that making cutting edge science 114 00:07:35,960 --> 00:07:40,160 Speaker 1: more accessible will eventually also make medicine cheaper and more accessible. 115 00:07:40,680 --> 00:07:44,840 Speaker 1: Take insulin it's only manufactured by a few pharmaceutical companies 116 00:07:45,080 --> 00:07:48,480 Speaker 1: and it's really expensive, but for millions of people, it's 117 00:07:48,520 --> 00:07:52,240 Speaker 1: also a life saving medication. So one collective of bio 118 00:07:52,280 --> 00:07:54,440 Speaker 1: Hacker is based out of a community bio lab in 119 00:07:54,480 --> 00:07:57,160 Speaker 1: Oakland has been working to engineer yeast so that it 120 00:07:57,200 --> 00:08:00,800 Speaker 1: produces insulin. The idea is to have ventually develop a 121 00:08:00,800 --> 00:08:04,440 Speaker 1: safe and f d A approved method to either allow 122 00:08:04,520 --> 00:08:07,040 Speaker 1: people to make their own medicine or at least provided 123 00:08:07,080 --> 00:08:11,320 Speaker 1: to diabetics for very cheap. Josiah's first big d i 124 00:08:11,440 --> 00:08:14,600 Speaker 1: Y experiment was health related to Since his teen years, 125 00:08:14,640 --> 00:08:17,440 Speaker 1: he had been plagued by digestive issues. He had tried 126 00:08:17,440 --> 00:08:20,640 Speaker 1: treatment after treatment, but nothing seemed to work. So it 127 00:08:20,640 --> 00:08:24,640 Speaker 1: took matters into his own hands. He gave himself a 128 00:08:24,640 --> 00:08:28,560 Speaker 1: fecal transplant. Yes, that is exactly what it sounds like, 129 00:08:29,000 --> 00:08:32,680 Speaker 1: and he led a reporter write about it. After that, 130 00:08:32,960 --> 00:08:35,880 Speaker 1: email started pouring in from other people who were sick 131 00:08:35,920 --> 00:08:39,320 Speaker 1: and either frustrated with doctors or out of options. They'd 132 00:08:39,320 --> 00:08:41,920 Speaker 1: read stories about things like Crisper and the News and 133 00:08:41,960 --> 00:08:45,080 Speaker 1: all its promise of simply snipping away the disease causing 134 00:08:45,160 --> 00:08:48,240 Speaker 1: letters in a person's genetic code. They wanted to know 135 00:08:48,280 --> 00:08:50,120 Speaker 1: whether there might be a d I Y fix for 136 00:08:50,160 --> 00:08:55,520 Speaker 1: them too. Here's where the frogs come in. You can't 137 00:08:55,520 --> 00:08:58,520 Speaker 1: be afraid of grabbing them too type they're they're pretty robust. 138 00:08:58,640 --> 00:09:01,319 Speaker 1: You you won't. Actually, you gotta like corn them against 139 00:09:01,360 --> 00:09:04,839 Speaker 1: the wall and just grab them. I don't want to 140 00:09:04,880 --> 00:09:07,319 Speaker 1: hurt them, won't You won't. Don't worry. Oh my god, 141 00:09:07,760 --> 00:09:22,160 Speaker 1: they're really get them all right, go in. Oh my god. 142 00:09:23,720 --> 00:09:27,400 Speaker 1: It's like literally the hardest part of the whole joes 143 00:09:27,480 --> 00:09:30,880 Speaker 1: I experimented on himself to hopefully open people's eyes to 144 00:09:30,960 --> 00:09:33,720 Speaker 1: the promise of d I Y science. But he realized 145 00:09:33,760 --> 00:09:35,520 Speaker 1: that if you're going to teach people how to make 146 00:09:35,559 --> 00:09:37,960 Speaker 1: a geen therapy for themselves, first you have to teach 147 00:09:37,960 --> 00:09:41,080 Speaker 1: them how to test it out, in this case on frogs. 148 00:09:41,800 --> 00:09:44,760 Speaker 1: To be honest, I found the whole thing pretty creepy. 149 00:09:45,120 --> 00:09:48,360 Speaker 1: Before injecting the frogs with anything, Josia knocks them out. 150 00:09:48,720 --> 00:09:51,960 Speaker 1: They look limp, like they're dead. They seem like they're 151 00:09:51,960 --> 00:09:54,640 Speaker 1: slowing down. Does it work like that? Does it make 152 00:09:54,720 --> 00:09:58,160 Speaker 1: them slow down? First? Yep, it's taking in aesthetic right, 153 00:09:58,520 --> 00:10:03,439 Speaker 1: so we'll definitely Yeah, they're still going tell of them 154 00:10:03,480 --> 00:10:05,880 Speaker 1: go a different pig. Yeah, one of them looks like 155 00:10:05,920 --> 00:10:09,960 Speaker 1: he's down already. Over the past few years, genetic engineering 156 00:10:09,960 --> 00:10:13,959 Speaker 1: has gotten a lot easier. Josiah actually does have a PhD, 157 00:10:14,400 --> 00:10:16,160 Speaker 1: but you don't need one to get your hands on 158 00:10:16,200 --> 00:10:18,760 Speaker 1: things like DNA. Jose I ordered the fullest at in 159 00:10:18,840 --> 00:10:21,720 Speaker 1: DNA off the Internet, along with everything else for the experiment, 160 00:10:22,000 --> 00:10:24,280 Speaker 1: and had it shipped to the office. Then he just 161 00:10:24,440 --> 00:10:27,640 Speaker 1: mixes it all up in his lab. So you put 162 00:10:27,640 --> 00:10:30,640 Speaker 1: the DNA in these tubes. There's four of them, would 163 00:10:30,640 --> 00:10:33,240 Speaker 1: for each frog, and now you're adding the polymer that 164 00:10:33,280 --> 00:10:38,360 Speaker 1: will help get into the frog. And then what's next 165 00:10:39,360 --> 00:10:43,840 Speaker 1: next is too way and inject them way in measurement 166 00:10:43,920 --> 00:10:55,080 Speaker 1: inject There's a long history of self experimentation in science, 167 00:10:55,559 --> 00:10:57,840 Speaker 1: and not just in the days before being a scientist 168 00:10:57,880 --> 00:11:02,080 Speaker 1: required getting a PhD. Nobel Prize winner Barry James Marshall 169 00:11:02,200 --> 00:11:05,240 Speaker 1: ingested a type of bacteria to successfully demonstrate its role 170 00:11:05,280 --> 00:11:11,320 Speaker 1: in causing ulcers sometimes though it wasn't so successful. Way 171 00:11:11,320 --> 00:11:15,400 Speaker 1: back in the twenties, Russian physician Alexander Bogdanov performed multiple 172 00:11:15,440 --> 00:11:18,520 Speaker 1: blood transfusions on himself. He wanted to test whether the 173 00:11:18,600 --> 00:11:23,600 Speaker 1: procedure might bring him eternal youth. Instead, it killed him. 174 00:11:23,679 --> 00:11:26,720 Speaker 1: But Josiah doesn't just imagine a world where such self 175 00:11:26,760 --> 00:11:30,360 Speaker 1: experimentation is done by the brave and the daring. He 176 00:11:30,400 --> 00:11:32,280 Speaker 1: wants a world we're whipping up a d i Y 177 00:11:32,360 --> 00:11:36,760 Speaker 1: gene therapy no longer seems daring at all, considering where 178 00:11:36,760 --> 00:11:41,960 Speaker 1: the science is now. That is a pretty radical vision. True. 179 00:11:42,400 --> 00:11:45,160 Speaker 1: Modern day genetics have made curing many ones in curable 180 00:11:45,200 --> 00:11:50,280 Speaker 1: diseases seem for the first time realistic. One gene therapy Externa, 181 00:11:50,440 --> 00:11:54,240 Speaker 1: approved last year, treats the form of inherited blindness, but 182 00:11:54,400 --> 00:11:58,240 Speaker 1: most therapies are still highly experimental and the abilities of 183 00:11:58,240 --> 00:12:01,320 Speaker 1: the technology are still really limit it. I've talked with 184 00:12:01,360 --> 00:12:03,520 Speaker 1: a lot of other people on science and medicine about 185 00:12:03,559 --> 00:12:06,880 Speaker 1: Josiah's work, and most of them are pretty skeptical. But 186 00:12:06,960 --> 00:12:09,920 Speaker 1: if you or your loved one is sick, Josia's vision 187 00:12:10,000 --> 00:12:13,520 Speaker 1: is a pretty compelling one, no matter how dubious it sounds. 188 00:12:14,880 --> 00:12:18,000 Speaker 1: That's exactly how Lara's Saurus felt when his wife Diane 189 00:12:18,040 --> 00:12:21,960 Speaker 1: was diagnosed with stage four lung cancer, and she was 190 00:12:21,960 --> 00:12:25,079 Speaker 1: only thirty years old and had never smoked. No one 191 00:12:25,120 --> 00:12:27,200 Speaker 1: knows why she got the disease at such a young age, 192 00:12:27,240 --> 00:12:30,800 Speaker 1: but it seemed genetics may have played a role. The 193 00:12:30,920 --> 00:12:34,959 Speaker 1: from bolt is very very poor, and we at the 194 00:12:34,960 --> 00:12:37,600 Speaker 1: beginning we were just told there is there's not any hope. 195 00:12:38,240 --> 00:12:42,000 Speaker 1: You can perhaps delayed the inevitable a little bit, but 196 00:12:42,080 --> 00:12:45,160 Speaker 1: not much, and there's really no hope at no point 197 00:12:45,200 --> 00:12:48,360 Speaker 1: in trying to fight too much against its better to 198 00:12:48,480 --> 00:12:51,840 Speaker 1: just enjoy your last days together and then that's going 199 00:12:51,880 --> 00:12:55,320 Speaker 1: to be it. But Lars did not give up. Instead, 200 00:12:55,360 --> 00:12:58,280 Speaker 1: he scoured the world and the Internet for promising treatments. 201 00:12:58,679 --> 00:13:01,480 Speaker 1: He eventually stumbled upon a professor in Germany involved in 202 00:13:01,480 --> 00:13:06,760 Speaker 1: an experimental personalized PEP died vaccine project and experimental immunotherapy. 203 00:13:07,640 --> 00:13:10,480 Speaker 1: Laras and Diane live in Norway, so Germany isn't all 204 00:13:10,520 --> 00:13:14,640 Speaker 1: that far. Immunotherapy is hot, and for good reason. The 205 00:13:14,679 --> 00:13:17,840 Speaker 1: medical literature is filled with tales of tumors suddenly shrinking 206 00:13:17,840 --> 00:13:22,240 Speaker 1: to nothing and terminal illness is miraculously reversing course. It's 207 00:13:22,280 --> 00:13:28,800 Speaker 1: a very interesting and scientifically intriguing way of attacking cancer 208 00:13:28,840 --> 00:13:34,200 Speaker 1: self uh and definitely still unproven and of course even 209 00:13:34,200 --> 00:13:37,280 Speaker 1: more unproven two years uh two years ago when she 210 00:13:37,280 --> 00:13:41,319 Speaker 1: started this. But we hope and believe that it can 211 00:13:41,360 --> 00:13:45,280 Speaker 1: be helpful against her cancer, but there's certainly no proof 212 00:13:45,760 --> 00:13:48,600 Speaker 1: that it will be. Diane was traveling to Germany every 213 00:13:48,600 --> 00:13:50,960 Speaker 1: two weeks for treatment, as well as adding new things 214 00:13:50,960 --> 00:13:54,360 Speaker 1: for her treatment regimen when they seem promising. Somewhere along 215 00:13:54,400 --> 00:13:57,040 Speaker 1: the way, a friend Saint Law is an article about Josiah, 216 00:13:57,520 --> 00:14:00,040 Speaker 1: so Laura's reached out curious about whether a d I 217 00:14:00,160 --> 00:14:03,760 Speaker 1: crisper treatment might work for Diane. Josiah told him it 218 00:14:03,800 --> 00:14:07,480 Speaker 1: probably wouldn't, but the two out of talking it led 219 00:14:07,480 --> 00:14:10,640 Speaker 1: to a plan to make cancer metotherapy more accessible by 220 00:14:10,720 --> 00:14:14,800 Speaker 1: making a d I y. Laura's had a blog where 221 00:14:14,800 --> 00:14:17,240 Speaker 1: he detailed all of the different treatments that Diane was 222 00:14:17,240 --> 00:14:20,840 Speaker 1: trying out. Like Josiah, patients often reached out to Laura's 223 00:14:20,880 --> 00:14:23,680 Speaker 1: after reading it. It was impossible to tell whether any 224 00:14:23,760 --> 00:14:27,840 Speaker 1: of Diane's experimental treatments were actually working, but she was 225 00:14:27,880 --> 00:14:31,240 Speaker 1: at least still alive and doing well, and the people 226 00:14:31,240 --> 00:14:34,000 Speaker 1: are reaching out and they asked it they could perhaps 227 00:14:34,000 --> 00:14:36,320 Speaker 1: to try the same thing, But then some people didn't 228 00:14:36,360 --> 00:14:40,480 Speaker 1: have the necessary funding to do it, and other people 229 00:14:40,600 --> 00:14:44,360 Speaker 1: were perhaps precluded from probably every second week to Germany. 230 00:14:44,520 --> 00:14:46,480 Speaker 1: So so then the question was, you know, are the 231 00:14:46,560 --> 00:14:50,320 Speaker 1: other ways that people can get this type of treatment 232 00:14:50,440 --> 00:14:55,360 Speaker 1: without traveling every second second week to Germany, without spending 233 00:14:55,920 --> 00:15:00,360 Speaker 1: the small fortune we have done. So, Laura start a 234 00:15:00,400 --> 00:15:04,760 Speaker 1: Facebook group called d I Y Cancer Vaccines. On Facebook, 235 00:15:04,840 --> 00:15:08,040 Speaker 1: people with the same diagnosis as Diane could discuss their treatment, 236 00:15:08,720 --> 00:15:12,160 Speaker 1: along with the possibility of making a cancer immunotherapy themselves. 237 00:15:12,640 --> 00:15:17,080 Speaker 1: The idea of making an immunotherapy wasn't completely impossible. For 238 00:15:17,120 --> 00:15:19,920 Speaker 1: a few thousand dollars, anyone can contract a lab to 239 00:15:20,000 --> 00:15:23,800 Speaker 1: manufacture a targeted peptide like Dianes. Everything else can be 240 00:15:23,880 --> 00:15:28,320 Speaker 1: found at a local pharmacy or online. It's promising, but 241 00:15:28,440 --> 00:15:32,720 Speaker 1: these immunotherapies are also highly experimental. There was a chance 242 00:15:32,720 --> 00:15:35,360 Speaker 1: that they could result in devastating side effects or just 243 00:15:35,600 --> 00:15:39,880 Speaker 1: altogether not work. Not to mention, it would be extraordinarily 244 00:15:39,920 --> 00:15:43,160 Speaker 1: expensive to d I y a vaccine that targeted as 245 00:15:43,160 --> 00:15:46,760 Speaker 1: many mutations as Diannes did. That would make the chances 246 00:15:46,800 --> 00:15:51,280 Speaker 1: of it working even slimmer. Still, as a Facebook community grew, 247 00:15:51,800 --> 00:15:54,800 Speaker 1: a few people decided to try out making the vaccine themselves. 248 00:15:55,840 --> 00:15:58,920 Speaker 1: One fell in Norwegian tried her homebrew vaccine on her husband, 249 00:15:59,000 --> 00:16:01,440 Speaker 1: who would run out of chance after his cancer had 250 00:16:01,480 --> 00:16:08,359 Speaker 1: spread to his brain. It didn't work, but Lars was inspired. 251 00:16:09,080 --> 00:16:11,960 Speaker 1: Last year, with help from Josiah, he published an online 252 00:16:12,000 --> 00:16:14,880 Speaker 1: guide for how to make an immunotherapy targeting a single 253 00:16:14,960 --> 00:16:20,320 Speaker 1: mutation in a councers tumor. I think the individual steps 254 00:16:20,480 --> 00:16:23,240 Speaker 1: by themselves are not so difficult, but there is a 255 00:16:23,680 --> 00:16:28,240 Speaker 1: herd life thing, both in comprehension like do you understand 256 00:16:28,400 --> 00:16:31,560 Speaker 1: enough to actually dare to do it and of course 257 00:16:31,600 --> 00:16:34,440 Speaker 1: implementing it. The practical steps, some of them are not 258 00:16:34,560 --> 00:16:37,440 Speaker 1: so difficult, some of them are a little bit more tricky. 259 00:16:37,440 --> 00:16:42,600 Speaker 1: But I think if you are a reasonably well informed 260 00:16:42,680 --> 00:16:45,440 Speaker 1: person and you have the time I think in particular 261 00:16:45,440 --> 00:16:48,160 Speaker 1: this time, and the willingness and the energy to try 262 00:16:48,240 --> 00:16:51,800 Speaker 1: to get into this, I think I think many people 263 00:16:51,800 --> 00:16:54,840 Speaker 1: will be able to do it. The Internet has galvanized 264 00:16:54,880 --> 00:16:57,400 Speaker 1: patients with all sorts of conditions to take a more 265 00:16:57,480 --> 00:17:00,960 Speaker 1: hands on approach to their care. For example, there's a 266 00:17:01,000 --> 00:17:03,760 Speaker 1: website where people with Crowns disease can share what treatments 267 00:17:03,800 --> 00:17:06,640 Speaker 1: have worked for them and what has it. It's sort 268 00:17:06,640 --> 00:17:10,560 Speaker 1: of like a patient powered research network. Another site, Patients 269 00:17:10,600 --> 00:17:13,840 Speaker 1: like Me, connects people with all kinds of ailments. It's 270 00:17:13,880 --> 00:17:16,280 Speaker 1: clear that patients are ready to take a more active 271 00:17:16,359 --> 00:17:19,520 Speaker 1: role in their care. Perhaps this is just the next step. 272 00:17:20,080 --> 00:17:23,719 Speaker 1: The risks Laura's says seem far less daring when you're 273 00:17:23,760 --> 00:17:26,919 Speaker 1: out of options for survival. So I think it's like 274 00:17:26,960 --> 00:17:30,200 Speaker 1: a small step in a direction to help show people 275 00:17:30,200 --> 00:17:34,359 Speaker 1: that something can be possible. Hank Greeley, a bioethosist at 276 00:17:34,359 --> 00:17:37,400 Speaker 1: Stanford and a frequent critic of Josiah's, told me he's 277 00:17:37,440 --> 00:17:40,440 Speaker 1: doubtful anything as significant as a cancer treatment will come 278 00:17:40,480 --> 00:17:45,399 Speaker 1: from someone's homebrew biolab. I could imagine somebody taking a 279 00:17:45,520 --> 00:17:50,280 Speaker 1: rare genetic condition and showing that in a Petrie dish 280 00:17:50,600 --> 00:17:56,159 Speaker 1: they can successfully use crisper to to reverse an unfavorable 281 00:17:56,280 --> 00:18:00,359 Speaker 1: mutation in a disease that, for whatever reason, by botech 282 00:18:00,440 --> 00:18:04,000 Speaker 1: and pharma haven't explored. But making the jump from a 283 00:18:04,000 --> 00:18:06,040 Speaker 1: cell line in a Petri dish, which I think bio 284 00:18:06,080 --> 00:18:08,720 Speaker 1: hackers might be able to do to a drug and 285 00:18:08,760 --> 00:18:13,000 Speaker 1: a human, is such an enormous jump that I think 286 00:18:13,000 --> 00:18:15,680 Speaker 1: bio hackers are likely to play only the smallest of 287 00:18:15,800 --> 00:18:18,960 Speaker 1: roles in that. Hank isn't all that concerned about Josiahs 288 00:18:19,000 --> 00:18:22,520 Speaker 1: Frog experiments, but he is concerned about what it might 289 00:18:22,600 --> 00:18:27,200 Speaker 1: lead to. Josiah's public experimentation has already led to copycats. 290 00:18:27,720 --> 00:18:30,399 Speaker 1: No one has gotten hurt yet, but they certainly could. 291 00:18:30,800 --> 00:18:33,480 Speaker 1: That ceo who injected himself with a herpie's treament on 292 00:18:33,560 --> 00:18:36,919 Speaker 1: stage did it without ever testing the treatment and humans first. 293 00:18:37,520 --> 00:18:40,159 Speaker 1: A few months later, he drowned, So it's impossible to 294 00:18:40,160 --> 00:18:42,840 Speaker 1: say how things might have worked out. But who knows 295 00:18:42,880 --> 00:18:45,920 Speaker 1: what might happen when you introduce a foreign substance into 296 00:18:45,920 --> 00:18:53,159 Speaker 1: the endlessly complex human body. That day that I visited 297 00:18:53,240 --> 00:18:56,199 Speaker 1: Josia's lab, he was planning to inject four frogs with 298 00:18:56,240 --> 00:18:59,280 Speaker 1: full s Dowton and four other frogs, the control frogs 299 00:18:59,359 --> 00:19:02,080 Speaker 1: with the place of Oh, it was the first phase 300 00:19:02,240 --> 00:19:06,120 Speaker 1: of a new experiment. Basically, all you're doing is you're 301 00:19:06,119 --> 00:19:09,280 Speaker 1: injecting a liquid and that's it. Like it's that simple, 302 00:19:09,280 --> 00:19:11,400 Speaker 1: And I don't think people understand that that, Like, it's 303 00:19:11,440 --> 00:19:13,880 Speaker 1: literally that simple you're injecting. He'd already gotten a good 304 00:19:13,880 --> 00:19:16,879 Speaker 1: results in one previous experiment. Injecting the frogs with a 305 00:19:16,920 --> 00:19:20,800 Speaker 1: different gene also meant stimulating growth. Yeah, so here's a 306 00:19:20,880 --> 00:19:25,440 Speaker 1: video that I took. We'll try to show you the frogs. 307 00:19:25,800 --> 00:19:28,760 Speaker 1: They're actually this guy is bigger. Now, that's what was 308 00:19:28,760 --> 00:19:31,440 Speaker 1: talking about. We call him thick boy because it's our 309 00:19:31,480 --> 00:19:35,200 Speaker 1: frog that grew like way bigger than all the other 310 00:19:35,200 --> 00:19:41,240 Speaker 1: frogs from the gene therapy. Thick boy, thick with two 311 00:19:41,280 --> 00:19:47,919 Speaker 1: cs CA. Okay, it's such an easy experiment to do, 312 00:19:48,000 --> 00:19:51,119 Speaker 1: right because there's an obvious way to tell if it's working. 313 00:19:51,600 --> 00:19:54,399 Speaker 1: You can weigh the frogs to see and if they 314 00:19:54,400 --> 00:19:58,359 Speaker 1: get big enough you can tell by I. Josia is 315 00:19:58,400 --> 00:20:03,520 Speaker 1: selling kids to perform these periments online for two that's 316 00:20:03,560 --> 00:20:06,960 Speaker 1: including six frogs. His hope is that it teaches people 317 00:20:06,960 --> 00:20:10,920 Speaker 1: how fun and simple science can be, and just maybe 318 00:20:11,119 --> 00:20:14,200 Speaker 1: that one day, performing such experiments on frogs might empower 319 00:20:14,240 --> 00:20:17,480 Speaker 1: people to take their health into their own hands. The 320 00:20:17,480 --> 00:20:19,399 Speaker 1: one thing that's important to notice that these genes are 321 00:20:19,480 --> 00:20:25,840 Speaker 1: human genes, they're not frog gains. So theoretically, you know, 322 00:20:26,280 --> 00:20:28,840 Speaker 1: it's testing like a gene therapy that would be used 323 00:20:28,840 --> 00:20:31,520 Speaker 1: in a human but it might not be as easy 324 00:20:31,680 --> 00:20:36,200 Speaker 1: as Josiah insists. Here's Hank Greeley again. I think this 325 00:20:36,320 --> 00:20:41,400 Speaker 1: idea of having a hobby in science is a good 326 00:20:41,440 --> 00:20:44,720 Speaker 1: one in and of itself. For the people involved. I 327 00:20:44,760 --> 00:20:47,000 Speaker 1: think there is some chance that they can do some 328 00:20:47,040 --> 00:20:52,240 Speaker 1: scientific benefit, which would be good. Um, I do think 329 00:20:52,320 --> 00:20:58,560 Speaker 1: that development of human drugs and biological products is not 330 00:20:58,640 --> 00:21:01,200 Speaker 1: what they should be focusing on, because I think their 331 00:21:01,480 --> 00:21:05,000 Speaker 1: likelihood of contributing significantly, at least in any very direct 332 00:21:05,040 --> 00:21:10,680 Speaker 1: way to that is very low. Josiah likes to say 333 00:21:10,720 --> 00:21:13,679 Speaker 1: things like, the only thing in the way of creating 334 00:21:13,760 --> 00:21:16,119 Speaker 1: cheap d i Y cures is enough people with the 335 00:21:16,200 --> 00:21:18,840 Speaker 1: knowledge to do it and the market to pay for it. 336 00:21:18,960 --> 00:21:22,720 Speaker 1: Take look start Out. That's the eight fifty dollar gene 337 00:21:22,720 --> 00:21:26,200 Speaker 1: therapy that treats blindness. Josiah is pretty sure he could 338 00:21:26,280 --> 00:21:29,520 Speaker 1: order stuff off the internet and make it for five dollars. 339 00:21:30,080 --> 00:21:32,600 Speaker 1: Another time, he told me he could make dragons if 340 00:21:32,640 --> 00:21:35,720 Speaker 1: there were only enough people to pay for it. According 341 00:21:35,720 --> 00:21:39,359 Speaker 1: to Josiah, it's all about market demand. That's why it's 342 00:21:39,400 --> 00:21:43,720 Speaker 1: so provocative. I interact with a lot of people who 343 00:21:43,720 --> 00:21:46,160 Speaker 1: have cancer, and a lot of people who have different 344 00:21:46,160 --> 00:21:47,920 Speaker 1: types of cancers that they have no treatment for, and 345 00:21:47,920 --> 00:21:50,399 Speaker 1: they're just trying to stay alive and survive. But when 346 00:21:51,080 --> 00:21:54,760 Speaker 1: it's their choice between dying and trying something, most people 347 00:21:54,840 --> 00:21:58,600 Speaker 1: try something. Well, if they could try it, if they 348 00:21:58,640 --> 00:22:02,679 Speaker 1: already had a system, apply form an organism that's been 349 00:22:02,720 --> 00:22:04,800 Speaker 1: set up which they could test these things on before 350 00:22:04,800 --> 00:22:07,679 Speaker 1: they try to themselves, so that risk of dying is less. 351 00:22:08,680 --> 00:22:11,720 Speaker 1: I like, that's a I think a really cool thing. 352 00:22:13,680 --> 00:22:16,959 Speaker 1: Josie's approach is extreme, but it's rooted in a concern 353 00:22:17,080 --> 00:22:21,199 Speaker 1: sharred well beyond bio hackers. Treatments sometimes take decades to 354 00:22:21,240 --> 00:22:24,320 Speaker 1: make it from Petrie dish to patient if it turns 355 00:22:24,359 --> 00:22:26,760 Speaker 1: out that is lucrative enough to pursue a treatment at all, 356 00:22:27,359 --> 00:22:29,880 Speaker 1: And when a treatment does make it to market, many 357 00:22:29,880 --> 00:22:33,200 Speaker 1: people can't afford it. Like, my dream is to get 358 00:22:33,200 --> 00:22:35,800 Speaker 1: people to be able to genetically modify themselves, but it's 359 00:22:35,840 --> 00:22:39,000 Speaker 1: also to uh. I don't want to say, like take 360 00:22:39,080 --> 00:22:41,920 Speaker 1: down the f d A, but figure out a new 361 00:22:41,960 --> 00:22:45,760 Speaker 1: model that works, right because right now there are a 362 00:22:45,760 --> 00:22:48,600 Speaker 1: ton of people dying and suffering that don't have access 363 00:22:48,600 --> 00:22:54,119 Speaker 1: to the drugs they need because of the regulations of time, 364 00:22:54,240 --> 00:22:57,320 Speaker 1: the money, I mean everything with the f d A. 365 00:22:57,880 --> 00:22:59,600 Speaker 1: How does that Ler used to be an attorney at 366 00:22:59,600 --> 00:23:02,240 Speaker 1: the f d A. Now she's a law professor studies 367 00:23:02,280 --> 00:23:05,560 Speaker 1: bio hackers, among other things. She told me that self 368 00:23:05,600 --> 00:23:09,320 Speaker 1: experimentation or experimenting on frogs might not be enough to 369 00:23:09,320 --> 00:23:12,560 Speaker 1: warrant a crackdown from the agency, but it also isn't 370 00:23:12,600 --> 00:23:15,520 Speaker 1: necessarily the best way to help people. So from a 371 00:23:15,520 --> 00:23:19,880 Speaker 1: public health perspective, if what we care about is helping 372 00:23:19,960 --> 00:23:22,840 Speaker 1: people and helping a lot of people, there are lots 373 00:23:22,840 --> 00:23:25,920 Speaker 1: of things that are pretty low tech and not very 374 00:23:25,960 --> 00:23:29,040 Speaker 1: sexy that we know work. So there are areas of 375 00:23:29,040 --> 00:23:31,479 Speaker 1: the country that don't even have clean water, right, so 376 00:23:31,560 --> 00:23:34,360 Speaker 1: giving clean water to people in Flint, Michigan and other 377 00:23:34,440 --> 00:23:37,679 Speaker 1: areas that would be a huge public health benefit That 378 00:23:37,800 --> 00:23:41,119 Speaker 1: isn't as sexy as genetically engineering yourself, um, but it's 379 00:23:41,160 --> 00:23:44,360 Speaker 1: something we know would work. And I I am very 380 00:23:44,400 --> 00:23:46,919 Speaker 1: interested in this area, and I'm as prone as anyone 381 00:23:47,040 --> 00:23:49,240 Speaker 1: to think this is a really exciting thing that jose 382 00:23:49,320 --> 00:23:52,560 Speaker 1: I is doing. But they're just all these other things 383 00:23:52,560 --> 00:24:00,440 Speaker 1: we know that help people on a large scale. Back 384 00:24:00,440 --> 00:24:02,960 Speaker 1: in Josie's lab, I got a good taste of how 385 00:24:03,000 --> 00:24:05,159 Speaker 1: easy it is for things to go wrong when you 386 00:24:05,200 --> 00:24:09,240 Speaker 1: do it yourself after instructing me in syringe technique. So 387 00:24:09,320 --> 00:24:11,600 Speaker 1: put your thumb down there on the bottom right, so 388 00:24:11,800 --> 00:24:15,000 Speaker 1: you have some pressure, right, because if you push on 389 00:24:15,080 --> 00:24:17,320 Speaker 1: the back when you try to push in, then you 390 00:24:17,400 --> 00:24:19,080 Speaker 1: push all the but then how do I push it in? 391 00:24:19,720 --> 00:24:21,480 Speaker 1: He asked me if I wanted to give injecting the 392 00:24:21,520 --> 00:24:24,919 Speaker 1: frogs to try myself. I'm one of those kids who 393 00:24:25,000 --> 00:24:27,919 Speaker 1: asked to be excused from dissecting frogs in high school. Biout, 394 00:24:28,080 --> 00:24:32,480 Speaker 1: So I declined, and I'm glad I did because then 395 00:24:32,560 --> 00:24:39,600 Speaker 1: this happened. Oh my god, he's like breathing really harding. Actually, 396 00:24:39,640 --> 00:24:40,840 Speaker 1: I think I might have got the vein on that 397 00:24:40,960 --> 00:24:43,720 Speaker 1: one accidental. What do you do if he's bleeding nothing, 398 00:24:43,840 --> 00:24:47,719 Speaker 1: hopefully in heels and he's I think that's just starting 399 00:24:47,720 --> 00:24:50,560 Speaker 1: to breathe again or starting to be able to see. 400 00:24:51,840 --> 00:24:59,760 Speaker 1: Probably not. We'll sleep. According to Josiah, the frog did survive, 401 00:25:20,280 --> 00:25:23,159 Speaker 1: and that's it for this week's prognosis. Thanks for listening. 402 00:25:23,880 --> 00:25:25,800 Speaker 1: Do you have a story about healthcare in the US 403 00:25:26,119 --> 00:25:29,680 Speaker 1: or around the world. We want to hear from you. 404 00:25:29,680 --> 00:25:32,479 Speaker 1: You can email me at m Portes at Bloomberg dot 405 00:25:32,560 --> 00:25:36,440 Speaker 1: net or find me on Twitter at bag Portes. If 406 00:25:36,480 --> 00:25:38,760 Speaker 1: you were a fan of this episode, please take a 407 00:25:38,760 --> 00:25:41,800 Speaker 1: moment to rate and review us. It'll help new listeners 408 00:25:41,840 --> 00:25:45,040 Speaker 1: find the show. This episode was produced by Liz Smith, 409 00:25:45,520 --> 00:25:48,600 Speaker 1: Our story editor was Rick Shine. Thanks to Drew Armstrong, 410 00:25:49,359 --> 00:25:52,439 Speaker 1: francesco Leavia has had a Bloomberg podcast. We'll see you 411 00:25:52,480 --> 00:25:52,920 Speaker 1: next week.