1 00:00:41,541 --> 00:00:44,669 Uh-oh. Uh-oh. You better pull the tongue up, pull the tongue up. 2 00:00:44,753 --> 00:00:46,814 - There you go. Is that better? - That... That's a lot... 3 00:00:46,838 --> 00:00:48,089 - Yeah. - Okay. 4 00:00:51,009 --> 00:00:53,409 - All right, I got this. - You guys going? 5 00:00:54,262 --> 00:00:56,181 Very slowly but surely, 6 00:00:56,264 --> 00:00:57,640 we're going somewhere. 7 00:01:13,865 --> 00:01:17,160 He doesn't want people to say, you know, "Oh, he's the blind kid." 8 00:01:18,703 --> 00:01:23,083 Because to him, he's... he's pretty much anything but the blind kid. 9 00:01:25,376 --> 00:01:26,795 Hi, Jackson! 10 00:01:26,878 --> 00:01:27,878 Hi! 11 00:01:28,838 --> 00:01:31,841 He's the boy who can do the monkey bars at recess. 12 00:01:31,925 --> 00:01:33,968 He's the boy on the wrestling team. 13 00:01:34,052 --> 00:01:36,846 He's, you know... He is just Jackson. 14 00:01:45,855 --> 00:01:49,317 - You okay? - Ow! 15 00:01:50,068 --> 00:01:51,194 Sorry about that. 16 00:01:51,861 --> 00:01:55,198 We've been hoping, since the day we found out what he had, 17 00:01:55,281 --> 00:01:57,367 that something would come along and... 18 00:01:58,243 --> 00:01:59,244 be able to help him. 19 00:01:59,369 --> 00:02:00,912 - You all right, bud? - Yeah. 20 00:02:00,995 --> 00:02:02,664 - You sure? - Yeah. 21 00:02:02,747 --> 00:02:03,747 See you later! 22 00:02:04,165 --> 00:02:08,294 And now there is an FDA-approved treatment. 23 00:02:08,378 --> 00:02:09,796 There is some kind of hope. 24 00:02:15,051 --> 00:02:17,279 We're on the verge of a technological breakthrough 25 00:02:17,303 --> 00:02:19,430 that could change the future of mankind. 26 00:02:22,642 --> 00:02:26,020 Most people have no idea how rapidly things are changing. 27 00:02:28,439 --> 00:02:31,734 We're now changing the DNA, the code of life. 28 00:02:34,445 --> 00:02:37,448 It's amazing, the sorts of things that we could do with this. 29 00:02:38,449 --> 00:02:40,201 The question is, should we? 30 00:02:44,164 --> 00:02:46,833 What happens if diseases were just eradicated? 31 00:02:50,670 --> 00:02:54,883 All technology is inherently about changing away from what is natural. 32 00:03:17,947 --> 00:03:19,427 A groundbreaking treatment 33 00:03:19,490 --> 00:03:21,868 for people with a faulty gene that impairs vision. 34 00:03:22,452 --> 00:03:26,372 It would be the first gene therapy in the US for an inherited disease. 35 00:03:26,456 --> 00:03:29,417 How does gene therapy work? This treatment? 36 00:03:29,500 --> 00:03:30,500 It's pretty amazing. 37 00:03:30,543 --> 00:03:33,755 You know, you inherit two chromosomes: one from the mother, one from the father. 38 00:03:33,838 --> 00:03:34,714 In this case, 39 00:03:34,797 --> 00:03:37,258 they inherited a faulty gene from each parent. 40 00:03:37,342 --> 00:03:38,382 Is this CRISPR? 41 00:03:38,843 --> 00:03:41,238 No. So, CRISPR corrects something that's already there. 42 00:03:41,262 --> 00:03:43,014 This is taking a normal copy of the gene 43 00:03:43,097 --> 00:03:45,975 and putting it in to replace the function that was missing. 44 00:03:50,939 --> 00:03:53,191 We're living in a 21st century 45 00:03:53,274 --> 00:03:56,527 where we can create a world where no life is limited by genetic disease. 46 00:03:56,611 --> 00:03:58,171 I mean, that's our vision as a company. 47 00:03:58,655 --> 00:04:01,741 There is a lot that I think this genetic revolution can do 48 00:04:01,824 --> 00:04:04,744 to transform the state of the human condition 49 00:04:04,827 --> 00:04:06,120 throughout the world. 50 00:04:08,289 --> 00:04:11,125 Building on the knowledge of the Human Genome Project, 51 00:04:11,209 --> 00:04:15,505 which identified the 30,000 different genes, uh, 52 00:04:15,588 --> 00:04:17,257 that are expressed in humans, 53 00:04:17,674 --> 00:04:21,010 we knew that this piece of DNA, RPE65, 54 00:04:21,094 --> 00:04:23,137 is very important in the visual cycle. 55 00:04:24,639 --> 00:04:30,353 We demonstrated that if we can just give a copy of a normal gene 56 00:04:30,436 --> 00:04:32,313 to the cells that are there, 57 00:04:33,231 --> 00:04:36,109 then we have a possibility to restore vision. 58 00:04:36,609 --> 00:04:40,780 Ultimately, you're transferring in a normal, functional copy, 59 00:04:40,863 --> 00:04:42,573 a healthy copy of a gene 60 00:04:42,657 --> 00:04:45,451 alongside the 23 pairs of chromosomes. 61 00:04:45,952 --> 00:04:47,537 It would be fair to say 62 00:04:48,037 --> 00:04:49,789 that DNA therapeutics 63 00:04:49,872 --> 00:04:53,626 is one of the most complex types of therapies, 64 00:04:53,710 --> 00:04:55,712 and it's taken a long time to develop. 65 00:04:56,379 --> 00:04:59,299 We're designing a rocket ship, but someone's gotta get into it, 66 00:04:59,340 --> 00:05:03,386 and those people ultimately shape history. 67 00:05:03,469 --> 00:05:07,140 And it is like stepping into the proverbial void and staring into it 68 00:05:07,223 --> 00:05:10,476 and saying, you know, "We're gonna hold hands together and jump." 69 00:05:37,170 --> 00:05:39,714 ♪ Bodies multiply ♪ 70 00:05:41,215 --> 00:05:43,593 ♪ Too many fortunes ♪ 71 00:05:44,719 --> 00:05:46,888 ♪ Too many lies ♪ 72 00:05:47,847 --> 00:05:49,849 ♪ Where's your blood ♪ 73 00:05:50,641 --> 00:05:52,894 ♪ Walk into the fire... ♪ 74 00:05:56,189 --> 00:05:58,691 Oh, come on. 75 00:06:01,235 --> 00:06:02,362 Fuck me. 76 00:06:02,987 --> 00:06:05,865 And there it is. 77 00:06:06,741 --> 00:06:08,159 Which one are you? 78 00:06:08,242 --> 00:06:09,577 Down here. 79 00:06:09,660 --> 00:06:11,996 I like to see you lose when you get really mad. 80 00:06:12,080 --> 00:06:14,207 I don't get mad, really. 81 00:06:14,290 --> 00:06:18,586 I get mad about when some bullshit happens. 82 00:06:20,380 --> 00:06:21,297 Language. 83 00:06:21,381 --> 00:06:22,840 No, no filter. 84 00:06:22,924 --> 00:06:24,509 No filter for me. 85 00:06:24,592 --> 00:06:25,426 All right. 86 00:06:25,510 --> 00:06:28,388 They'll need to beep out every word that I say. 87 00:06:29,514 --> 00:06:31,182 I'll leave you to your game. 88 00:06:32,266 --> 00:06:33,518 Finally. 89 00:06:33,601 --> 00:06:34,727 "Finally." 90 00:06:39,524 --> 00:06:41,818 I am a computer nerd. 91 00:06:42,693 --> 00:06:43,694 Listen to music, 92 00:06:44,487 --> 00:06:45,571 play games, 93 00:06:46,155 --> 00:06:47,448 watch movies, 94 00:06:47,532 --> 00:06:49,409 talk to friends online. 95 00:06:49,492 --> 00:06:52,537 You know, it's something I can do independently... 96 00:06:53,371 --> 00:06:58,251 in a world where I don't have much independence. 97 00:06:59,460 --> 00:07:02,004 I remember saying, "I have so many cousins 98 00:07:02,088 --> 00:07:05,550 who have so many children, and everyone is healthy. How... 99 00:07:05,883 --> 00:07:07,760 - What is this? How can we... - Yeah. 100 00:07:07,844 --> 00:07:09,846 And where does it come from in our genes?" 101 00:07:09,929 --> 00:07:12,849 Yeah, and... and a good way to explain it to people, 102 00:07:12,932 --> 00:07:15,101 when I explained it to some friends of mine, was, 103 00:07:15,184 --> 00:07:18,354 "The husband can't blame the wife, and the wife can't blame the husband. 104 00:07:18,438 --> 00:07:20,148 We each have to carry the gene 105 00:07:20,231 --> 00:07:23,484 in order for this thing to be passed on to the next generation." 106 00:07:24,360 --> 00:07:25,360 Right. 107 00:07:26,737 --> 00:07:28,948 - Hello. - Hello. 108 00:07:29,031 --> 00:07:31,051 How's that belly doing? How's the baby doing? 109 00:07:31,075 --> 00:07:33,675 - Good. - Any kicking activity? 110 00:07:33,703 --> 00:07:35,872 A little flutter, but not much. 111 00:07:35,955 --> 00:07:37,349 Well, introduce him, Manny. 112 00:07:37,373 --> 00:07:40,251 Well, this is the newest member to the Piazza family here. 113 00:07:40,334 --> 00:07:42,920 His name is Nicholas Eric Piazza. 114 00:07:43,004 --> 00:07:44,964 It's like, you know, he moves... 115 00:07:46,382 --> 00:07:48,509 cries, and then he just, like, stops. 116 00:07:50,511 --> 00:07:52,388 We were over the moon, 117 00:07:52,847 --> 00:07:56,642 and then at a well-care visit, at seven months of age, the doctor... 118 00:07:57,685 --> 00:07:59,270 lifted him to bear weight, 119 00:08:00,146 --> 00:08:03,274 and he wasn't putting any weight on his legs. 120 00:08:03,357 --> 00:08:06,194 And he basically then said, um... 121 00:08:07,111 --> 00:08:09,489 "I suspect him to have Werdnig-Hoffmann disease, 122 00:08:09,572 --> 00:08:12,074 - which is SMA type 1." - Right. 123 00:08:12,158 --> 00:08:14,243 And he bluntly said to me, um... 124 00:08:17,205 --> 00:08:19,165 "Go home and love your baby. 125 00:08:19,248 --> 00:08:21,501 He's gonna die before the age of two. 126 00:08:22,543 --> 00:08:24,378 And don't have any more kids." 127 00:08:24,462 --> 00:08:27,048 ♪ Happy birthday to you... ♪ 128 00:08:27,131 --> 00:08:29,383 - You want to blow? One... - ♪ Happy birthday ♪ 129 00:08:29,467 --> 00:08:31,219 - ♪ To you ♪ - ...two... 130 00:08:31,302 --> 00:08:32,970 ♪ Happy birthday... ♪ 131 00:08:33,054 --> 00:08:33,888 Yay. 132 00:08:33,971 --> 00:08:35,407 Yay! 133 00:08:36,807 --> 00:08:39,644 Yay! 134 00:08:39,727 --> 00:08:43,481 SMA affects the cells that... 135 00:08:43,564 --> 00:08:45,483 you control your legs with, 136 00:08:45,566 --> 00:08:47,944 your arms with, your voluntary muscles. 137 00:08:48,027 --> 00:08:50,863 ♪ Itsy-bitsy spider Went up the waterspout... ♪ 138 00:08:51,447 --> 00:08:53,407 But the strange thing about the disease is 139 00:08:53,491 --> 00:08:57,370 is if you take your finger and you go like this to Nicholas, 140 00:08:57,954 --> 00:08:59,497 - he'll feel that. - He can feel that. 141 00:08:59,580 --> 00:09:02,625 So, in one aspect, he's paralyzed, 142 00:09:02,708 --> 00:09:06,337 but in another aspect, he still has all feeling in his body. 143 00:09:07,838 --> 00:09:12,677 My tattoo is a spine with chains wrapped around it 144 00:09:12,760 --> 00:09:14,470 in the shape of DNA. 145 00:09:17,723 --> 00:09:20,059 What I tend to tell people 146 00:09:20,142 --> 00:09:21,978 when they ask me, you know, 147 00:09:22,061 --> 00:09:24,689 "What is it like to have SMA?" um... 148 00:09:25,773 --> 00:09:27,066 I say when you get home, 149 00:09:27,942 --> 00:09:29,151 lie on your bed, 150 00:09:29,652 --> 00:09:31,028 and get comfortable, 151 00:09:31,612 --> 00:09:32,738 and don't move. 152 00:09:33,406 --> 00:09:35,491 If you have an itch, don't move. 153 00:09:36,158 --> 00:09:38,619 If you have to pee, don't move. 154 00:09:38,995 --> 00:09:41,372 If you're in pain, don't move. 155 00:09:42,164 --> 00:09:43,791 And tell me how long you last." 156 00:09:49,338 --> 00:09:52,758 This drug called Spinraza was approved just before Christmas. 157 00:09:52,842 --> 00:09:54,051 It's a really exciting drug. 158 00:09:54,135 --> 00:09:57,763 It treats spinal muscular atrophy, which is a rare genetic disease. 159 00:09:57,847 --> 00:09:59,098 It is just devastating. 160 00:09:59,181 --> 00:10:01,034 There has been nothing to treat this disease until now. 161 00:10:01,058 --> 00:10:04,937 And this drug has really shown, in clinical trials, to make a difference. 162 00:10:05,021 --> 00:10:06,856 Use your arms. Push up. 163 00:10:06,939 --> 00:10:08,539 There you go. You're doing it. 164 00:10:08,608 --> 00:10:10,818 - Push up. - Go. Push, baby. 165 00:10:10,901 --> 00:10:11,944 Push, baby. 166 00:10:14,614 --> 00:10:17,742 Yeah! Good! 167 00:10:18,576 --> 00:10:20,953 Wow. 168 00:10:21,662 --> 00:10:23,664 - I cannot believe that. - I know. 169 00:10:23,748 --> 00:10:26,042 - That kid was a type 1? - Mm-hmm. 170 00:10:27,460 --> 00:10:28,919 That's amazing, man. 171 00:10:29,837 --> 00:10:32,048 Look at you standing there all by yourself. 172 00:10:32,131 --> 00:10:33,424 Get them up here? 173 00:10:33,507 --> 00:10:34,717 Can you get them up there? 174 00:10:35,509 --> 00:10:39,430 I couldn't even imagine if that happened... 24 years ago. 175 00:10:39,513 --> 00:10:40,348 I know. 176 00:10:40,431 --> 00:10:42,892 These people have no idea how lucky they are. 177 00:10:47,063 --> 00:10:50,358 We knew that there were medicines coming. We knew that they were working on stuff. 178 00:10:50,441 --> 00:10:52,276 Just never thought it'd be in Nick's lifetime. 179 00:10:52,360 --> 00:10:55,321 We just never thought it was gonna happen in... 180 00:10:55,404 --> 00:10:56,822 Exactly, in Nick's lifetime. 181 00:10:56,906 --> 00:10:59,950 My understanding is, for the first year, 182 00:11:00,034 --> 00:11:02,411 - it's $750,000. - Right. 183 00:11:02,495 --> 00:11:06,749 - And then, it's $350,000 for life. - Every year after. 184 00:11:06,832 --> 00:11:08,376 - Every year after. - Right. 185 00:11:08,459 --> 00:11:10,378 And insurance has not approved us yet, 186 00:11:10,461 --> 00:11:12,129 - so we are still fighting. - Yeah. 187 00:11:22,723 --> 00:11:25,434 These new drugs that are coming to market, 188 00:11:25,518 --> 00:11:28,229 they're gene therapies, they're miracle drugs, 189 00:11:28,312 --> 00:11:31,232 but they have to be affordable for people. 190 00:11:31,857 --> 00:11:35,361 We're gonna bankrupt families and cause our system to buckle 191 00:11:35,444 --> 00:11:37,530 under the weight of those prices. 192 00:11:37,613 --> 00:11:41,409 This drug, Spinraza, will be about $750,000 for the first year. 193 00:11:41,784 --> 00:11:46,664 After that, about $375,000 a year for maintenance. 194 00:11:46,747 --> 00:11:49,041 So, really effective, but really, really expensive. 195 00:11:49,125 --> 00:11:51,186 Are we gonna be seeing more of these high-priced drugs? 196 00:11:51,210 --> 00:11:52,962 Yeah, we are. There are dozens of them, 197 00:11:53,045 --> 00:11:55,506 some expected to cost in the millions of dollars, 198 00:11:55,589 --> 00:11:58,008 which impacts all of us and our insurance. 199 00:11:58,092 --> 00:11:59,611 Big news in the drug pricing world. 200 00:11:59,635 --> 00:12:02,388 Spark Therapeutics, of course, last month received approval 201 00:12:02,471 --> 00:12:06,726 for the first gene therapy that treats a rare inherited form of vision loss 202 00:12:06,809 --> 00:12:08,185 that can lead to blindness. 203 00:12:08,269 --> 00:12:10,938 The company says it's pricing that one-time gene therapy 204 00:12:11,021 --> 00:12:13,774 at a total of $850,000, 205 00:12:13,858 --> 00:12:16,736 or $425,000 per eye. 206 00:12:16,819 --> 00:12:18,654 Just like how NAS came out... 207 00:12:18,738 --> 00:12:22,074 We're closing in on a million dollars when we talk about Luxturna. 208 00:12:22,158 --> 00:12:24,952 And, oh, by the way, Luxturna 209 00:12:25,035 --> 00:12:27,788 is based on basic science 210 00:12:27,872 --> 00:12:30,332 paid for by taxpayers through the NIH. 211 00:12:30,416 --> 00:12:33,177 A lot of people don't know, I think, a lot of patients don't even know 212 00:12:33,252 --> 00:12:36,380 a lot of these drugs are funded with taxpayer dollars. 213 00:12:36,464 --> 00:12:38,174 Pharma wants us to believe... 214 00:12:38,841 --> 00:12:42,386 that if they can't make outrageous profits, 215 00:12:43,095 --> 00:12:45,973 there will be no research and development done. 216 00:12:46,056 --> 00:12:49,977 The pharmaceutical industry is the most profitable industry 217 00:12:50,060 --> 00:12:51,060 in the country. 218 00:12:51,771 --> 00:12:53,773 They have the highest-paid executives. 219 00:12:53,856 --> 00:12:56,567 They spend more money on advertising and marketing 220 00:12:56,650 --> 00:12:58,402 than they do on research and development. 221 00:12:59,528 --> 00:13:02,656 Spark Therapeutics now have enough cash to keep running for years. 222 00:13:02,740 --> 00:13:05,159 What do we do in the great ethos debate 223 00:13:05,242 --> 00:13:08,162 about pricing for something that brings back sight? 224 00:13:08,496 --> 00:13:11,165 The real question we focused in on was less about 225 00:13:11,248 --> 00:13:12,708 what was the cost of investment, 226 00:13:12,792 --> 00:13:15,669 what was the cost of manufacturing it, or cost of goods, 227 00:13:15,753 --> 00:13:19,298 but what was the value of sight in a child? 228 00:13:20,132 --> 00:13:21,926 It makes me really angry 229 00:13:22,009 --> 00:13:24,053 when I hear drug companies ask the question, 230 00:13:24,136 --> 00:13:26,347 "What is it worth to you to save your child's life? 231 00:13:26,430 --> 00:13:29,183 What is it worth to you to cure blindness?" 232 00:13:30,351 --> 00:13:34,897 Hell! It's worth whatever I have to spend. You know? I'll empty my bank accounts. 233 00:13:34,980 --> 00:13:37,525 I'll... I'll mortgage my house. What do you want? 234 00:13:37,608 --> 00:13:39,318 That is not the right question. 235 00:13:44,698 --> 00:13:48,661 When insulin was invented in the 1920s, 236 00:13:48,744 --> 00:13:51,205 the three inventors sold the patents 237 00:13:51,747 --> 00:13:53,165 each for one dollar. 238 00:13:53,833 --> 00:13:57,044 They said, "We're giving insulin to the world." 239 00:13:58,128 --> 00:14:00,714 When Jonas Salk invented the polio vaccine, 240 00:14:01,465 --> 00:14:02,758 he didn't patent it. 241 00:14:02,842 --> 00:14:04,718 Who owns the patent on this vaccine? 242 00:14:05,928 --> 00:14:10,266 Well, the people, I would say. There is no patent. This is... 243 00:14:10,349 --> 00:14:12,389 Could you patent the sun? 244 00:14:12,810 --> 00:14:14,478 I received that polio vaccine 245 00:14:14,562 --> 00:14:16,939 when I was six years old at Cerveny School. 246 00:14:17,022 --> 00:14:20,568 But if you would have priced that polio vaccine 247 00:14:20,651 --> 00:14:23,153 the way drug corporations are pricing drugs now, 248 00:14:23,237 --> 00:14:25,037 it probably would have cost a million dollars. 249 00:14:27,366 --> 00:14:31,662 We're quickly coming to a point where the cost of these drugs, 250 00:14:31,745 --> 00:14:33,956 for the numbers of people who could benefit from them, 251 00:14:34,039 --> 00:14:37,209 will break the... the proverbial bank. 252 00:14:37,668 --> 00:14:39,879 And so, I think every indication is 253 00:14:39,962 --> 00:14:43,757 this will be an issue that only becomes much, much, much, much bigger. 254 00:14:43,841 --> 00:14:46,093 What does it mean to grant patent protection, 255 00:14:46,176 --> 00:14:48,053 intellectual property protection, 256 00:14:48,554 --> 00:14:51,348 for genes or gene-editing tools? 257 00:14:51,432 --> 00:14:53,434 Or are we granting intellectual property protection 258 00:14:53,517 --> 00:14:58,480 for things that people shouldn't have the right to claim ownership over? Right? 259 00:14:58,564 --> 00:15:01,358 It's sort of granting, in a way, a property protection 260 00:15:01,442 --> 00:15:03,235 to something that isn't their property. 261 00:15:03,319 --> 00:15:07,072 Reform to lower drug prices won't happen 262 00:15:07,156 --> 00:15:10,534 without patients rising up and demanding change. 263 00:15:25,007 --> 00:15:26,447 I think things don't change 264 00:15:26,508 --> 00:15:29,678 unless the medical establishment has no choice but to change. 265 00:15:31,555 --> 00:15:32,806 Two big bags of moss. 266 00:15:32,890 --> 00:15:35,184 - Two big bags of moss. - You get that. 267 00:15:35,267 --> 00:15:37,269 We need some containers. 268 00:15:42,024 --> 00:15:43,734 Where are the frog boxes? 269 00:15:45,527 --> 00:15:48,614 I used to get, like, maybe one email a month, 270 00:15:48,697 --> 00:15:49,990 and now I get, like, ten a day. 271 00:15:50,074 --> 00:15:54,328 Generally, it's people who are, you know, seriously sick. 272 00:15:55,496 --> 00:15:56,496 Uh... 273 00:15:57,206 --> 00:15:59,792 A lot of muscular dystrophy people because... 274 00:16:00,459 --> 00:16:03,045 I... I did that CRISPR experiment on my muscle. 275 00:16:03,128 --> 00:16:04,672 All these people need help, 276 00:16:05,214 --> 00:16:07,800 but nobody has the money or knowledge to help them. 277 00:16:08,509 --> 00:16:12,221 What happens if we can double or triple the scientific population of the world? 278 00:16:14,974 --> 00:16:16,600 We're gonna pretend like... 279 00:16:16,684 --> 00:16:19,687 somebody just received a kit in the mail, right? 280 00:16:19,770 --> 00:16:20,604 Okay. 281 00:16:20,688 --> 00:16:23,273 So, like... we'll start off with, like... 282 00:16:24,233 --> 00:16:27,111 "When you first receive your kit from The Odin, 283 00:16:27,194 --> 00:16:30,322 it's very important that you follow these instructions." 284 00:16:34,660 --> 00:16:38,455 This frog right here has not received the gene therapy. 285 00:16:38,539 --> 00:16:41,542 He is at the exact same weight when he started. 286 00:16:42,126 --> 00:16:46,755 This frog, who we have named Thick Boy, received the gene therapy. 287 00:16:47,339 --> 00:16:50,175 He started out also at eight grams of weight. 288 00:16:52,261 --> 00:16:53,679 And he now weighs... 289 00:16:53,762 --> 00:16:57,766 1.6 grams more than he did at the beginning. 290 00:16:58,475 --> 00:16:59,893 Yeah! 291 00:17:00,477 --> 00:17:02,563 Hi! I'm here today 292 00:17:02,646 --> 00:17:06,608 to show you how to inject a frog safely and effectively. 293 00:17:07,735 --> 00:17:11,905 We are going to inject this frog with the IGF1 gene. 294 00:17:12,781 --> 00:17:14,825 IGF1, what's that? 295 00:17:16,368 --> 00:17:19,246 IGF1 makes you grow bigger. 296 00:17:20,456 --> 00:17:21,582 Syringes. 297 00:17:21,665 --> 00:17:23,375 This gene therapy will teach you 298 00:17:23,459 --> 00:17:26,086 not only how to do gene therapy on animals, 299 00:17:26,420 --> 00:17:28,630 but how to be an all-around good scientist. 300 00:17:29,965 --> 00:17:32,593 I want scientists to be badasses. 301 00:17:32,676 --> 00:17:34,470 I want people to actually do science. 302 00:17:34,553 --> 00:17:36,430 All right, is this one ready to go out? 303 00:17:37,097 --> 00:17:38,932 - Ready. - Ready to go out. 304 00:17:49,151 --> 00:17:50,277 What now? 305 00:17:51,236 --> 00:17:53,363 I might wanna say... say something. 306 00:17:55,365 --> 00:17:58,535 I miss being able to, like... 307 00:17:59,328 --> 00:18:02,706 just... drive down a hallway, 308 00:18:03,415 --> 00:18:04,792 on my own, 309 00:18:04,875 --> 00:18:07,127 without needing someone to push me. 310 00:18:07,544 --> 00:18:11,048 Would be amazing to have that. 311 00:18:11,882 --> 00:18:14,802 Because I don't think I realized how much 312 00:18:16,136 --> 00:18:19,765 I valued moving on my own 313 00:18:20,599 --> 00:18:22,059 until I lost it. 314 00:18:22,726 --> 00:18:23,936 He's never walked, 315 00:18:24,019 --> 00:18:27,815 so the very first time he ever got into a powered wheelchair, we... we cried. 316 00:18:27,898 --> 00:18:30,317 Over the years, he started to lose that function, 317 00:18:30,400 --> 00:18:34,571 and if he could get back into a powered chair... 318 00:18:34,655 --> 00:18:36,657 - That would be... - ...just being able to sit up 319 00:18:36,740 --> 00:18:37,825 a little bit more... 320 00:18:37,908 --> 00:18:40,345 - That would be unbelievable. - ...and get that thumb to drive. 321 00:18:40,369 --> 00:18:42,454 But even... even at a lower level, 322 00:18:42,538 --> 00:18:44,706 - even, like, just being able to swallow. - Right. 323 00:18:45,207 --> 00:18:46,875 He drools on himself, 324 00:18:46,959 --> 00:18:48,877 and we have to go back there 325 00:18:48,961 --> 00:18:51,004 and wipe him, and clean him up. 326 00:18:52,840 --> 00:18:56,677 If it was to help him to stop doing that, to just make him swallow better, 327 00:18:57,636 --> 00:18:59,263 and give him some dignity. 328 00:19:05,269 --> 00:19:06,395 - You good? - Yeah. 329 00:19:08,605 --> 00:19:10,500 Please stay on the line 330 00:19:10,524 --> 00:19:12,526 while we connect you to our associate. 331 00:19:12,609 --> 00:19:13,889 Hello, this is Caroline. 332 00:19:14,194 --> 00:19:15,612 Hey, Caroline, how you doing? 333 00:19:15,696 --> 00:19:16,780 Good. How are you? 334 00:19:16,864 --> 00:19:18,532 Good, good. My name's Manny Piazza. 335 00:19:18,615 --> 00:19:21,326 I'm calling you in regards to my son, Nicholas Piazza. 336 00:19:21,410 --> 00:19:22,244 Yes. 337 00:19:22,327 --> 00:19:26,206 The question that we have is what would the dose actually cost? 338 00:19:26,290 --> 00:19:29,835 That's a hard thing to say because it depends on the insurance. 339 00:19:29,918 --> 00:19:32,129 I'm talking about if I wanted to pay for it. 340 00:19:32,337 --> 00:19:36,466 Uh, so, our... our, um, wholesale at physician cost 341 00:19:36,550 --> 00:19:39,178 for the drug is $125,000 a dose. 342 00:19:39,261 --> 00:19:43,932 So I wanted to get my son a treatment, it would be $125,000 for that treatment? 343 00:19:45,225 --> 00:19:46,768 That's obscene. 344 00:19:46,852 --> 00:19:49,021 Yeah, it's those pharmaceutical companies for you. 345 00:19:49,104 --> 00:19:50,564 Fucking Christ. 346 00:19:50,647 --> 00:19:51,666 Yeah, that's crazy. 347 00:19:51,690 --> 00:19:54,943 Is there any negotiation with that? Let's say I came up with... 348 00:19:55,027 --> 00:19:57,321 If I tried to do a GoFundMe page. 349 00:19:57,404 --> 00:19:59,507 - I'm just... I'm just asking a question. - Yeah, no... 350 00:19:59,531 --> 00:20:01,325 How much money would I need to raise 351 00:20:01,408 --> 00:20:03,702 in order to give my son that first treatment? 352 00:20:04,203 --> 00:20:07,331 Well, so, I mean, we don't want us to have to come to that stage at all. 353 00:20:07,664 --> 00:20:09,249 It's just sad, 354 00:20:09,333 --> 00:20:10,417 and it's... it's... 355 00:20:11,168 --> 00:20:12,669 It's... You don't notice it 356 00:20:12,753 --> 00:20:14,755 until it's, like, affecting your family, 357 00:20:14,838 --> 00:20:17,466 until it's, like, your son who needs this medicine, 358 00:20:17,549 --> 00:20:18,800 your father who needs this, 359 00:20:18,884 --> 00:20:21,511 your brother who needs this treatment 360 00:20:21,595 --> 00:20:23,388 just to maybe have a better quality of life. 361 00:20:23,472 --> 00:20:25,390 In the United States, 362 00:20:25,474 --> 00:20:28,435 the number one cause of bankruptcy is medical bills. 363 00:20:28,518 --> 00:20:29,518 Exactly, yeah. 364 00:20:29,561 --> 00:20:33,023 You should not have to go bankrupt 365 00:20:33,106 --> 00:20:34,149 to not die. 366 00:20:34,233 --> 00:20:35,150 Yeah. 367 00:20:35,234 --> 00:20:36,443 That's crazy. 368 00:20:36,526 --> 00:20:37,444 Yeah. 369 00:20:37,527 --> 00:20:40,864 It took us almost eight months to find a doctor to even talk to. 370 00:20:40,948 --> 00:20:43,200 You know, I even called up Spinraza 371 00:20:43,283 --> 00:20:45,202 to ask them how much it cost to make the drug. 372 00:20:45,285 --> 00:20:48,080 I mean, I... I don't even know if this price is even a legit drug 373 00:20:48,163 --> 00:20:50,540 or if they're ripping me off, to be quite honest with you. 374 00:20:50,624 --> 00:20:53,627 I'm wondering why it's so expensive in the first place. 375 00:20:54,044 --> 00:20:55,772 Sure. Absolutely. Let me look into... 376 00:20:55,796 --> 00:20:56,796 um, let me look into that 377 00:20:56,838 --> 00:20:58,674 and see what information I can get for you. 378 00:20:58,757 --> 00:21:00,425 All I can say is that, for adults... 379 00:21:00,509 --> 00:21:02,761 Yeah, Caroline... 380 00:21:02,844 --> 00:21:06,473 What I think I don't want to do is I don't want to tell my son no anymore. 381 00:21:06,640 --> 00:21:08,576 - I'm a little tired of doing that. - I... I don't... 382 00:21:08,600 --> 00:21:11,400 No, no, no, I absolutely understand that. I don't wanna do that either. 383 00:21:11,436 --> 00:21:13,647 I'm really trying to keep my emotions in check here, 384 00:21:13,730 --> 00:21:15,274 but to be quite honest with you, 385 00:21:15,357 --> 00:21:18,652 the frustration's getting to be a little bit ridiculous at this point. 386 00:21:18,735 --> 00:21:20,404 It's ridiculous. 387 00:21:20,737 --> 00:21:21,947 It's just, everywhere we go, 388 00:21:22,030 --> 00:21:24,616 there's, like, another roadblock for this freaking thing. 389 00:21:24,700 --> 00:21:26,159 When I think about 390 00:21:26,743 --> 00:21:29,454 how hard we worked to get to this point, 391 00:21:30,664 --> 00:21:31,665 and... 392 00:21:31,957 --> 00:21:35,294 now we gotta deal with some kind of bureaucratic nonsense. 393 00:21:35,669 --> 00:21:38,630 They're saying this life... 394 00:21:39,715 --> 00:21:41,091 is worth a million dollars. 395 00:21:41,174 --> 00:21:42,009 Yeah. 396 00:21:42,092 --> 00:21:43,802 Pay up or fuck you. 397 00:21:43,885 --> 00:21:44,761 Yeah, pretty much. 398 00:21:44,845 --> 00:21:47,514 That's what they're saying. 399 00:21:49,474 --> 00:21:52,936 Your call has been forwarded to an automatic voice message system. 400 00:21:53,020 --> 00:21:54,771 Hi, Katherine. 401 00:21:54,855 --> 00:21:56,982 Um, I am the father of Nicholas Piazza, 402 00:21:57,065 --> 00:22:01,653 and, um, I just had a couple of questions I wanted to go over with you. 403 00:22:01,737 --> 00:22:03,965 When you get a minute, give me a call. 404 00:22:03,989 --> 00:22:07,492 SMA, if left untreated, 405 00:22:08,160 --> 00:22:09,703 is a death sentence. 406 00:22:11,079 --> 00:22:14,207 The disease is degenerative. 407 00:22:14,791 --> 00:22:16,543 Every moment that goes past, 408 00:22:17,919 --> 00:22:20,464 I'm losing more and more nerve cells. 409 00:22:21,048 --> 00:22:22,900 If you have a medical emergency 410 00:22:22,924 --> 00:22:25,719 which needs to have a doctor contacted immediately, 411 00:22:25,802 --> 00:22:27,679 please press one. 412 00:22:40,317 --> 00:22:43,820 So, we do have a test, which... 413 00:22:44,404 --> 00:22:45,989 Yeah, yeah, so... 414 00:22:46,656 --> 00:22:48,909 I have been optimizing. 415 00:22:48,992 --> 00:22:50,535 Yeah. Oh, yeah, I saw that picture. 416 00:22:50,619 --> 00:22:52,829 Yeah, the fluorescent DNA. 417 00:22:52,913 --> 00:22:55,916 When I first started, it was like maybe one sperm has it, right? 418 00:22:55,999 --> 00:22:58,251 But right now, there's, like, so many of them. 419 00:22:58,668 --> 00:23:02,172 But that's just to test the protocol. And then, once we have that, 420 00:23:02,255 --> 00:23:05,342 I'm gonna be using CRISPR to start repairing genetic diseases. 421 00:23:05,425 --> 00:23:06,802 - Yeah. - So... 422 00:23:06,885 --> 00:23:09,638 But right now it's still just like, "Let's get past that barrier..." 423 00:23:09,721 --> 00:23:12,182 - Now you got that gene, you can... - Yeah. 424 00:23:12,265 --> 00:23:14,065 - That's great. - Technically... 425 00:23:16,478 --> 00:23:19,147 For all of history, 426 00:23:19,231 --> 00:23:22,067 all of us, all organisms, 427 00:23:22,150 --> 00:23:25,153 have been slaves to our genomes. 428 00:23:25,946 --> 00:23:29,616 To see all these people talk about genetic engineering, CRISPR, 429 00:23:29,950 --> 00:23:31,118 and... and say, 430 00:23:31,952 --> 00:23:33,578 "I'm afraid 431 00:23:34,079 --> 00:23:36,248 of somebody doing something bad." 432 00:23:36,331 --> 00:23:39,418 We've all... Everybody's talked about this at this conference, 433 00:23:39,501 --> 00:23:41,336 "I'm afraid of somebody doing bad." 434 00:23:42,170 --> 00:23:43,672 You know who it doesn't scare? 435 00:23:43,755 --> 00:23:46,383 The people who are suffering from genetic diseases, 436 00:23:46,967 --> 00:23:48,760 the people who suffer every day 437 00:23:48,844 --> 00:23:50,971 and just wish there was something to help them out. 438 00:23:52,097 --> 00:23:53,473 If you're a scientist, 439 00:23:53,682 --> 00:23:54,558 what are you doing 440 00:23:54,641 --> 00:23:56,852 if you're not trying to fucking help people? 441 00:23:57,185 --> 00:23:59,312 We don't have review boards. 442 00:23:59,896 --> 00:24:02,315 There's nobody to tell us what to do. There's no committees 443 00:24:02,399 --> 00:24:05,569 who can sit there and say you can and can't do this. 444 00:24:06,153 --> 00:24:08,905 No. We make that choice. 445 00:24:09,739 --> 00:24:11,074 The fucking thought 446 00:24:11,158 --> 00:24:14,744 that somebody like David Ishee can contribute to scientific literature 447 00:24:14,828 --> 00:24:16,705 is scoffed at by academics. 448 00:24:17,289 --> 00:24:19,875 He doesn't have a PhD or a master's or a bachelor's, 449 00:24:20,542 --> 00:24:22,669 but he's one of the most brilliant dudes I've met. 450 00:24:24,838 --> 00:24:26,631 We buy our equipment on eBay. 451 00:24:27,340 --> 00:24:31,303 We run it out of our garages, our kitchens, our sheds. 452 00:24:31,803 --> 00:24:32,929 And because of this, 453 00:24:33,472 --> 00:24:35,724 everybody thinks we're gonna destroy the world. 454 00:24:36,766 --> 00:24:37,976 Well, fucking A. 455 00:24:38,059 --> 00:24:39,853 The world's already destroyed, 456 00:24:40,187 --> 00:24:42,814 and biohackers are the only ones who can motherfucking save it. 457 00:24:45,400 --> 00:24:47,027 Science is your hope. 458 00:24:47,110 --> 00:24:48,778 Knowledge is your hope. 459 00:24:48,862 --> 00:24:52,157 I say, be your own fucking hope. 460 00:25:10,258 --> 00:25:11,258 Roberts? 461 00:25:18,725 --> 00:25:21,269 - How you doing today? - Mmm, I'm doing all right. 462 00:25:22,896 --> 00:25:24,356 Deep breath. 463 00:25:24,481 --> 00:25:25,481 That's it. 464 00:25:31,947 --> 00:25:34,699 People who have HIV are consistently tested 465 00:25:34,783 --> 00:25:35,909 for their viral load, 466 00:25:35,992 --> 00:25:39,996 which is a measure of how much virus is actually in their bloodstream. 467 00:25:42,707 --> 00:25:46,169 I was on the traditional, uh, medication. 468 00:25:46,253 --> 00:25:47,963 When I left my job, though, 469 00:25:48,046 --> 00:25:50,715 my insurance became a little bit more imperiled. 470 00:26:12,153 --> 00:26:14,239 The ability to access treatment 471 00:26:14,781 --> 00:26:18,076 really is a factor of your socioeconomic well-being. 472 00:26:24,249 --> 00:26:26,418 The medicine, without insurance, 473 00:26:26,501 --> 00:26:29,879 would run someone around $25,000 per year. 474 00:26:29,963 --> 00:26:30,964 It doesn't make sense. 475 00:26:31,047 --> 00:26:34,342 We put up with it because it seems like there's no better solution. 476 00:26:34,843 --> 00:26:39,139 And I'm starting to see that... we're ready for that better solution. 477 00:26:42,601 --> 00:26:44,561 Being HIV-positive, 478 00:26:45,353 --> 00:26:49,858 the sort of distance that it places between you and everybody else, 479 00:26:49,941 --> 00:26:51,401 especially your loved ones, 480 00:26:52,027 --> 00:26:55,905 where, like, the very expression of your physical love 481 00:26:56,448 --> 00:26:59,034 brings with it the possibility of death. 482 00:27:01,161 --> 00:27:02,954 As a privileged white dude, 483 00:27:03,038 --> 00:27:05,749 I would be just fine getting this medicine, 484 00:27:05,832 --> 00:27:08,668 but I know that it's just not the reality 485 00:27:08,752 --> 00:27:11,171 for millions of other people on this planet. 486 00:27:11,838 --> 00:27:15,133 I'm interested in pursuing an alternative therapy 487 00:27:15,634 --> 00:27:17,469 through this network of biohackers, 488 00:27:17,552 --> 00:27:18,595 a way that... 489 00:27:19,596 --> 00:27:24,017 transcends the... the need for the FDA to get involved. 490 00:27:34,736 --> 00:27:36,780 We got Aaron. We're already on a live stream. 491 00:27:36,863 --> 00:27:38,865 - Can we have you... - Absolutely. 492 00:27:39,908 --> 00:27:43,953 I'm Aaron Traywick. I'm the CEO of Ascendance Biomedical. 493 00:27:45,163 --> 00:27:48,333 We are developing gene therapy technologies 494 00:27:48,416 --> 00:27:50,335 outside of the approval process. 495 00:27:51,252 --> 00:27:57,467 Our first application will be the, uh, N6 HIV therapy for Tristan. 496 00:27:59,135 --> 00:28:01,096 We're just gonna have to show the world 497 00:28:01,179 --> 00:28:04,099 what radical gene therapy technology can do 498 00:28:04,182 --> 00:28:07,519 to help people take the health of their lives into their own hands. 499 00:28:08,103 --> 00:28:11,690 We're now ready to move forward with live testing with Tristan for HIV. 500 00:28:15,527 --> 00:28:17,529 It's currently the wild, wild west. 501 00:28:17,612 --> 00:28:20,615 Here we are, with minimal resources. 502 00:28:20,740 --> 00:28:22,867 We don't have a lot of money, but we've got... 503 00:28:23,785 --> 00:28:26,287 everything that it takes to do this, 504 00:28:26,371 --> 00:28:30,291 and we do this largely as a self-funded entity. 505 00:28:30,375 --> 00:28:34,421 Individual entrepreneurs banded together to deliver these treatments. 506 00:28:35,630 --> 00:28:38,675 The goal is identify the need, 507 00:28:38,758 --> 00:28:41,177 deliver a quality product, 508 00:28:42,262 --> 00:28:43,513 self-experiment. 509 00:28:44,639 --> 00:28:47,517 There is some cause for concern, for certain. 510 00:28:47,600 --> 00:28:50,979 Like, I'm not gonna say that I'm not at all, like, bothered 511 00:28:51,062 --> 00:28:54,774 by the possibilities of this causing some sort of allergic reaction 512 00:28:55,608 --> 00:28:58,695 or of this ending up becoming, like, a virus in its own way, 513 00:28:58,778 --> 00:29:02,323 where it's reproducing, but it's irritating my immune system. 514 00:29:03,533 --> 00:29:06,286 But these are risks that I'm willing to take, 515 00:29:06,661 --> 00:29:09,164 not just because of the potential impact, 516 00:29:09,247 --> 00:29:11,708 but because I trust the researchers 517 00:29:11,791 --> 00:29:16,212 to put together something that will probably not kill me. 518 00:29:17,046 --> 00:29:20,425 I'm hoping the trust is not misplaced. 519 00:29:38,359 --> 00:29:42,655 So, I've got a really large amount of DNA prepped. 520 00:29:42,739 --> 00:29:44,616 I have everything I need to do this. 521 00:29:45,241 --> 00:29:47,118 It's just a matter of doing the work. 522 00:29:50,830 --> 00:29:52,665 So, in order to get Pele pregnant, 523 00:29:52,749 --> 00:29:59,005 I'm mixing the DNA solution that carries bacterial genes and allows them to glow. 524 00:29:59,631 --> 00:30:05,595 And now I'm adding it to the dog sperm cells here. 525 00:30:08,848 --> 00:30:13,853 So now, hopefully, her eggs will be fertilized by those sperm... 526 00:30:14,687 --> 00:30:17,982 and, uh, we will make a transgenic puppy or two. 527 00:30:18,733 --> 00:30:20,401 Come here, girl. 528 00:30:22,612 --> 00:30:23,780 Pele. 529 00:30:39,838 --> 00:30:42,757 There's a company called Ascendance. 530 00:30:43,174 --> 00:30:47,095 We kind of got connected through a biohacker buddy of mine in Austria. 531 00:30:47,178 --> 00:30:51,850 So, he read a study about, uh, an antibody that kills... 532 00:30:52,892 --> 00:30:54,936 lots of different strains of HIV. 533 00:30:55,520 --> 00:30:57,856 And so they wanted to, um, 534 00:30:57,939 --> 00:31:00,400 see if they could turn that into a therapy 535 00:31:00,483 --> 00:31:04,904 and try to make it work with my cheaper gene therapy platform. 536 00:31:06,489 --> 00:31:08,616 Tristan wanted to make sure that there was, um, 537 00:31:08,700 --> 00:31:10,451 a little bit of tamper-proofing, 538 00:31:10,535 --> 00:31:13,621 and this needs to not be frozen, so it just needs to be cool. 539 00:31:13,705 --> 00:31:17,083 So honestly, it would be reasonably stable at room temperature. 540 00:31:17,166 --> 00:31:20,628 You know, we ship blood samples back to the lab, 541 00:31:20,712 --> 00:31:24,340 and as long as it gets there within a day and the temperature is still safe, 542 00:31:24,424 --> 00:31:25,800 then it should be just fine. 543 00:31:25,884 --> 00:31:26,968 Right, right. 544 00:31:27,051 --> 00:31:29,637 The way I've got it, there's four syringes. 545 00:31:30,263 --> 00:31:33,057 So, all he'll need to do, uh, when he gets it 546 00:31:33,141 --> 00:31:35,727 is just stick it in the fridge till you're ready to use it. 547 00:31:35,810 --> 00:31:36,810 Excellent. 548 00:31:52,994 --> 00:31:53,995 This is N6. 549 00:31:54,913 --> 00:31:57,957 This is a rare HIV antibody. 550 00:31:58,041 --> 00:32:01,586 It's a new approach to attacking HIV. 551 00:32:03,212 --> 00:32:05,924 So, the idea of the whole project is to... 552 00:32:06,257 --> 00:32:10,637 uh, take this antibody that occurs in some people with the right genes 553 00:32:10,720 --> 00:32:14,265 and transfer that to people it wouldn't normally occur in. 554 00:32:18,061 --> 00:32:20,688 So, basically, you're transporting the immunity 555 00:32:20,772 --> 00:32:22,482 from one person to another 556 00:32:22,565 --> 00:32:25,777 by taking this... this DNA sequence from one person to another. 557 00:32:29,238 --> 00:32:30,823 I want to participate 558 00:32:30,907 --> 00:32:33,785 in the biohacker community of spreading this around, 559 00:32:34,702 --> 00:32:38,581 because I want to see working-class people be able to fix themselves. 560 00:32:39,499 --> 00:32:42,335 If a handful of people control the technology 561 00:32:42,418 --> 00:32:44,420 and a handful of people have that power, 562 00:32:44,754 --> 00:32:47,715 then those handful of people are holding the reins on the world 563 00:32:47,799 --> 00:32:50,468 and they can say, "Okay, well, we're gonna cure all the diseases, 564 00:32:50,551 --> 00:32:52,431 but you can't have it," or, "You can't have it," 565 00:32:52,512 --> 00:32:53,781 or, "You just don't have the money," 566 00:32:53,805 --> 00:32:56,557 or, "You're not the right class or race or sex," or whatever. 567 00:32:56,641 --> 00:32:59,602 But if everybody has it, if we all can do it... 568 00:33:07,193 --> 00:33:10,780 Everything is... is legal under US law, the way we're doing it. 569 00:33:13,825 --> 00:33:17,078 You know, what you're really talking about is your own ownership of yourself. 570 00:33:20,248 --> 00:33:23,710 You can do whatever genetics you want to do on yourself. 571 00:33:25,628 --> 00:33:28,631 And that's something that we all should really work to protect. 572 00:33:29,757 --> 00:33:32,969 There's... There is a long history of people experimenting on themselves. 573 00:33:33,052 --> 00:33:35,972 It's not permitted, at least, in regulated environments 574 00:33:36,055 --> 00:33:37,056 like universities, 575 00:33:37,140 --> 00:33:39,726 but people outside of that environment 576 00:33:39,809 --> 00:33:41,894 is something we don't have a lot of control over. 577 00:33:42,186 --> 00:33:44,981 And I have to believe, at some point, 578 00:33:45,064 --> 00:33:47,692 the FDA would intervene and say, "You're effect... 579 00:33:47,775 --> 00:33:52,280 You're selling a drug, a device, whatever, without license. 580 00:33:52,363 --> 00:33:53,823 Stop, cease and desist." 581 00:33:58,828 --> 00:34:01,873 - It's a lot of casserole. - I think you can manage. 582 00:34:01,956 --> 00:34:04,268 I kind of flattened it out so it'd cool down faster. 583 00:34:04,292 --> 00:34:06,627 I gave you a spoon so it might be a little easier. 584 00:34:06,753 --> 00:34:08,313 You need a spoon? 585 00:34:08,337 --> 00:34:10,057 - I got him a spoon. - All right. 586 00:34:10,089 --> 00:34:11,716 I'm good. How are you? 587 00:34:11,799 --> 00:34:14,218 So what I have so far, it looks like, 588 00:34:14,302 --> 00:34:17,305 is that Jackson could have surgery on... 589 00:34:17,889 --> 00:34:20,433 the 16th of July. 590 00:34:20,516 --> 00:34:21,392 Okay. 591 00:34:21,476 --> 00:34:25,313 And then the second eye would be the 31st. 592 00:34:25,396 --> 00:34:26,230 Okay. 593 00:34:26,314 --> 00:34:29,901 Now, they're actively looking at your insurance for the drug itself. 594 00:34:29,984 --> 00:34:30,984 Okay, good. 595 00:34:31,027 --> 00:34:32,612 And I don't know how much they cover. 596 00:34:32,695 --> 00:34:34,322 I'm kind of caught in the middle of it 597 00:34:34,405 --> 00:34:36,866 because Spark is doing the money part of it for the drug. 598 00:34:36,949 --> 00:34:39,053 They're trying to work all that out with people, so... 599 00:34:39,077 --> 00:34:43,039 But at least we'll be in the loop here to get moving. So, okay? 600 00:34:43,122 --> 00:34:44,892 - Sounds good. Thank you. - That's awesome. 601 00:34:44,916 --> 00:34:46,375 Oh, you're quite welcome. 602 00:34:50,046 --> 00:34:51,923 - Are you excited? - Yeah. 603 00:34:54,634 --> 00:34:56,469 - Yeah. - That was the phone call. 604 00:34:56,552 --> 00:34:58,833 That was the phone call we've been waiting for. 605 00:34:59,555 --> 00:35:01,450 Looks like you got something on your mind. 606 00:35:01,474 --> 00:35:03,184 What if it doesn't work? 607 00:35:03,267 --> 00:35:05,770 - If the surgery doesn't work? - Yeah. 608 00:35:05,853 --> 00:35:08,147 Well, I think we should still try it, right? 609 00:35:08,564 --> 00:35:10,525 But we know that it might not work, right? 610 00:35:10,608 --> 00:35:12,735 And if it doesn't, what happens? 611 00:35:12,819 --> 00:35:13,819 Well... 612 00:35:15,279 --> 00:35:16,405 We just... We wait. 613 00:35:17,156 --> 00:35:19,367 'Cause they're doing good stuff every day. 614 00:35:19,450 --> 00:35:21,953 But I have a good feeling. I think it's gonna work. 615 00:35:22,036 --> 00:35:24,122 - You think it's gonna work? - Yeah. 616 00:35:24,205 --> 00:35:25,432 - I think so, too. - Yeah. 617 00:35:25,456 --> 00:35:27,458 - We'll stay positive, right? - Mm-hmm. 618 00:35:27,542 --> 00:35:28,542 Yeah. 619 00:35:29,710 --> 00:35:32,255 I know they have to detach his retina. 620 00:35:32,880 --> 00:35:34,520 - And then they inject... - Eww! 621 00:35:34,841 --> 00:35:36,509 ...the Luxturna underneath... 622 00:35:37,844 --> 00:35:39,262 the retina. They said it's... 623 00:35:39,345 --> 00:35:41,681 like, literally just, like, a few drops. 624 00:35:41,764 --> 00:35:43,307 They're going to remove my eye? 625 00:35:43,391 --> 00:35:44,767 - No! - No! 626 00:35:45,226 --> 00:35:46,978 They're not gonna remove your eye. 627 00:35:54,193 --> 00:35:55,695 Ava! 628 00:35:55,778 --> 00:35:58,156 - I think I got it. - Let me try it. 629 00:35:58,239 --> 00:35:59,782 They're trying to still navigate 630 00:35:59,866 --> 00:36:02,743 who's paying what, how much are they going to accept. 631 00:36:02,827 --> 00:36:04,829 Are we gonna be on the hook for anything? 632 00:36:05,496 --> 00:36:06,789 I don't know. 633 00:36:09,292 --> 00:36:11,460 - I hope not. - Does it matter? 634 00:36:11,544 --> 00:36:13,671 - Eh, no, but... - We're doing it no matter what. 635 00:36:13,754 --> 00:36:15,381 Yeah, I know. But it's a matter of... 636 00:36:15,840 --> 00:36:17,466 You know, it would be nice to know. 637 00:36:17,550 --> 00:36:20,386 - Are we eating ramen noodles... - Exactly, yeah. 638 00:36:20,469 --> 00:36:22,722 Can we at least have stuffed pepper casserole? 639 00:36:22,805 --> 00:36:24,307 Yeah. 640 00:36:25,558 --> 00:36:26,976 It would be nice to know. 641 00:36:27,226 --> 00:36:28,728 But I don't know, you know... 642 00:36:29,228 --> 00:36:32,064 We were denied for genetic testing. 643 00:36:32,940 --> 00:36:33,940 Right. 644 00:36:34,442 --> 00:36:37,528 So, who knows. You know, it's so new. Like... 645 00:36:37,612 --> 00:36:42,283 For a lot of the insurance companies, it's their... their first couple patients. 646 00:36:42,366 --> 00:36:44,678 You know, he could very well be this insurance company's... 647 00:36:44,702 --> 00:36:47,181 Right, this isn't... Right, this isn't getting your tonsils out. 648 00:36:47,205 --> 00:36:49,790 - This is a brand-new... Right. - Right. 649 00:36:49,874 --> 00:36:52,668 - He could be their first patient. - Right, yeah. 650 00:36:52,752 --> 00:36:54,253 Which, that in of itself is scary. 651 00:36:54,337 --> 00:36:56,005 It's not comfortable. 652 00:36:56,088 --> 00:36:59,175 Well, that's what it feels like when you're on a rocket, silly. 653 00:36:59,258 --> 00:37:01,052 It's not comfortable! 654 00:37:01,135 --> 00:37:02,654 To think that, you know, 655 00:37:02,678 --> 00:37:05,765 to put him through all of this, and then it not work... 656 00:37:06,599 --> 00:37:08,476 That's scary. 657 00:37:09,435 --> 00:37:12,331 But then it's like, if I didn't do it, I'd kick myself in the butt, you know? 658 00:37:12,355 --> 00:37:14,232 'Cause his life could be completely different 659 00:37:14,315 --> 00:37:16,400 - in just a few short months. - Mm-hmm. 660 00:37:16,484 --> 00:37:20,071 You know, it's like, as a parent, I'm making this decision for him. 661 00:37:24,075 --> 00:37:26,661 I really want to, like... 662 00:37:26,744 --> 00:37:29,622 I really want to... like... 663 00:37:30,289 --> 00:37:33,251 I really want to, like... 664 00:37:33,876 --> 00:37:35,127 um... 665 00:37:37,338 --> 00:37:40,800 I really want him to have the surgery 666 00:37:40,883 --> 00:37:44,095 because I really want him... to... 667 00:37:44,845 --> 00:37:46,389 um, to see. 668 00:37:49,809 --> 00:37:51,394 It... To me, it's scary. 669 00:37:51,477 --> 00:37:52,812 I think it's scary. 670 00:37:58,776 --> 00:37:59,777 Hi, Caroline. 671 00:37:59,860 --> 00:38:00,860 Hi. 672 00:38:00,903 --> 00:38:03,239 So, I have, um, good news. 673 00:38:03,489 --> 00:38:06,075 Um, I just got off the phone with your insurance, 674 00:38:06,158 --> 00:38:09,203 and it looks like it was the straw that broke the camel's back, so I think 675 00:38:09,745 --> 00:38:13,332 we are... we're in good shape to have this kick off in March. 676 00:38:13,791 --> 00:38:14,791 Okay, great. 677 00:38:15,167 --> 00:38:18,879 So then I guess when we see the radiologist on Wednesday... 678 00:38:18,963 --> 00:38:20,857 We can start to set up a date to get the Spinraza. 679 00:38:20,881 --> 00:38:22,341 ...then we'll set up a date. Okay. 680 00:38:22,425 --> 00:38:25,011 Oh, Caroline, if you can, give me your boss's name and number. 681 00:38:25,094 --> 00:38:26,971 I'll see if I can get you a raise, okay? 682 00:38:27,054 --> 00:38:28,306 Will do. 683 00:38:29,640 --> 00:38:31,320 So, what do you think of that, bro? 684 00:38:31,809 --> 00:38:33,894 The same thing that I've always said. 685 00:38:33,978 --> 00:38:36,647 Until I am on the table, 686 00:38:36,731 --> 00:38:39,066 needle in my back, 687 00:38:39,150 --> 00:38:40,318 I'm not there yet. 688 00:38:40,401 --> 00:38:44,030 Okay. Well, I can tell you what, that's the best news I've heard. 689 00:38:44,113 --> 00:38:45,197 I mean, hey, 690 00:38:45,281 --> 00:38:49,160 if I'm the realist, you're the optimist. 691 00:38:49,243 --> 00:38:50,870 Absolutely. 692 00:38:50,953 --> 00:38:52,747 There's gotta be a high-low, right? 693 00:38:52,830 --> 00:38:54,391 Exactly. There's got to be a high and low. 694 00:38:54,415 --> 00:38:55,750 Okay, I'm with you, bro. 695 00:38:55,833 --> 00:38:58,210 Without the high, there is no low. 696 00:38:58,294 --> 00:39:01,547 So, I think you better get ready for the next few Wednesdays. 697 00:39:01,797 --> 00:39:03,799 I will. 698 00:39:04,258 --> 00:39:05,885 I'll see you later, alligator. 699 00:39:05,968 --> 00:39:07,094 Adios. 700 00:39:08,721 --> 00:39:10,931 My parents are fucking superheroes. 701 00:39:11,557 --> 00:39:13,309 Like, I don't know how in the hell 702 00:39:13,934 --> 00:39:16,562 they've done what they've done the past 24 years... 703 00:39:17,313 --> 00:39:18,689 and stayed sane. 704 00:39:20,316 --> 00:39:21,359 But they have. 705 00:39:22,151 --> 00:39:23,444 And I, uh... 706 00:39:24,695 --> 00:39:26,989 I would not trade them for the world. 707 00:39:29,075 --> 00:39:30,618 Drug companies... 708 00:39:31,494 --> 00:39:35,122 work to keep control of the price. 709 00:39:35,790 --> 00:39:38,542 If they raise the price too high 710 00:39:38,626 --> 00:39:42,046 and the pain for real people becomes too great, 711 00:39:42,129 --> 00:39:44,673 they know that it could tip the balance against them. 712 00:39:45,049 --> 00:39:48,552 It almost sounds like you're taking advantage of the insurance companies. 713 00:39:48,636 --> 00:39:50,096 I mean, how do you justify it? 714 00:39:50,179 --> 00:39:54,642 You're bringing up the concerns, uh, around access that we certainly had 715 00:39:54,725 --> 00:39:57,395 as we were getting closer to the approval. 716 00:39:57,478 --> 00:39:59,855 And so, we provide rebates back, 717 00:39:59,939 --> 00:40:04,443 uh, if it's not showing continued efficacy out as far as three years. 718 00:40:04,527 --> 00:40:08,239 The company also outlaid, uh, three sort of interesting payment models, 719 00:40:08,322 --> 00:40:12,326 including a way to potentially allow payers to pay in installments. 720 00:40:12,410 --> 00:40:16,831 It seems, to me, a simpler way to deal with it is just lower the price. 721 00:40:17,415 --> 00:40:18,541 Bring the price down, 722 00:40:18,833 --> 00:40:22,461 uh, so that we are not dealing with this complex system 723 00:40:22,545 --> 00:40:24,755 where the company maintains control of the price 724 00:40:24,839 --> 00:40:28,509 and maintains control of whether people are actually gonna get access to it. 725 00:40:28,592 --> 00:40:31,095 This is currently the only treatment 726 00:40:31,178 --> 00:40:33,472 for people with spinal muscular atrophy, 727 00:40:33,556 --> 00:40:36,596 and the fact it's being denied to families based on cost is just devastating. 728 00:40:39,186 --> 00:40:41,147 We will not give up. 729 00:40:41,230 --> 00:40:43,524 I will not give up because I want to live. 730 00:40:43,607 --> 00:40:48,946 Wake up! We want the drug fast! Wake up! We want the drug fast! 731 00:40:49,029 --> 00:40:51,031 We're gonna scream! We're gonna shout! 732 00:40:51,115 --> 00:40:53,367 What do we want? Spinraza now! 733 00:40:53,451 --> 00:40:56,495 "We need this drug or people will die." 734 00:40:56,579 --> 00:40:58,330 That's the message from families 735 00:40:58,414 --> 00:41:01,250 of those living with spinal muscular atrophy. 736 00:41:01,876 --> 00:41:04,587 As parents, not only are we fighting the disease, 737 00:41:04,670 --> 00:41:10,259 we are now fighting for our child's right to life and right to health. 738 00:41:10,342 --> 00:41:13,262 You know, for me, I think of it like in Blade Runner 739 00:41:13,345 --> 00:41:16,765 where corporations are in control 740 00:41:16,849 --> 00:41:19,894 of the way the world's business is conducted 741 00:41:19,977 --> 00:41:21,312 and our lives are lived. 742 00:41:21,395 --> 00:41:24,565 The right question we need to ask as a society 743 00:41:24,648 --> 00:41:28,486 is what is the price that will maximize people's ability 744 00:41:28,569 --> 00:41:32,031 to get access to and to afford these incredibly important drugs, 745 00:41:32,406 --> 00:41:35,201 and companies should make a reasonable profit. 746 00:41:40,581 --> 00:41:42,750 So, the N6 that you're getting now 747 00:41:42,833 --> 00:41:45,544 is basically, like, phase one, in terms of our production. 748 00:41:46,170 --> 00:41:50,090 It is not for human consumption, for research purposes only. 749 00:41:50,174 --> 00:41:52,510 What you do with it is what you do with it. 750 00:41:52,593 --> 00:41:53,761 We are dissolved of... 751 00:41:54,720 --> 00:41:55,804 liability. 752 00:41:55,888 --> 00:41:56,888 Makes sense. 753 00:41:57,348 --> 00:42:00,559 Right now is ideal for us to move forward. 754 00:42:01,018 --> 00:42:02,937 Everything that we're doing, in principle, 755 00:42:03,020 --> 00:42:05,189 is kind of what the governments of the world are afraid 756 00:42:05,272 --> 00:42:07,274 that people will do with gene therapy technology. 757 00:42:07,358 --> 00:42:09,485 Find a way to, um... 758 00:42:10,528 --> 00:42:12,279 to just modify yourself 759 00:42:12,363 --> 00:42:14,573 or give access to it to other people, right? 760 00:42:14,657 --> 00:42:16,325 'Cause that is the equalizer. 761 00:42:16,408 --> 00:42:18,744 That's leveling the playing field for health. 762 00:42:18,827 --> 00:42:19,995 That's the dream. 763 00:42:20,621 --> 00:42:22,873 Just to play devil's advocate, though, 764 00:42:22,957 --> 00:42:25,584 there is some risks associated to this, right? 765 00:42:45,145 --> 00:42:48,732 This is an update on Ascendance Biomedical 766 00:42:48,816 --> 00:42:53,279 and the experimental HIV therapy for the N6 antibody. 767 00:42:53,362 --> 00:42:55,864 I am excited and... 768 00:42:56,198 --> 00:42:57,283 um... 769 00:42:58,576 --> 00:43:04,331 I'm personally quite all right with taking flak for being, uh... 770 00:43:07,751 --> 00:43:10,087 I don't wanna say careless, but, you know... 771 00:43:10,546 --> 00:43:12,256 going outside of the boundaries. 772 00:43:21,056 --> 00:43:22,558 Individual liberty, 773 00:43:22,641 --> 00:43:26,395 the importance of individuals to be able to make decisions for themselves, 774 00:43:26,478 --> 00:43:30,482 is something that we value and we want to make sure people enjoy, 775 00:43:30,566 --> 00:43:31,817 but only up to a point. 776 00:43:32,109 --> 00:43:34,111 We want heroism, we want heroes, 777 00:43:34,194 --> 00:43:37,698 but we really want to set up a system that doesn't demand heroism 778 00:43:37,781 --> 00:43:39,700 for us to have advances. 779 00:43:40,242 --> 00:43:42,995 And the system that has been set up feels too slow sometimes, 780 00:43:43,078 --> 00:43:46,540 but the question is, what do you lose as you go faster? 781 00:43:48,375 --> 00:43:52,296 When should the state be permitted to infringe on the liberty of individuals? 782 00:43:52,379 --> 00:43:56,258 The boundary tends to be the welfare, health, 783 00:43:56,759 --> 00:43:58,177 protection of others. 784 00:44:11,482 --> 00:44:13,150 Oh, man, I'm exhausted. 785 00:44:13,651 --> 00:44:14,652 Um... 786 00:44:16,320 --> 00:44:19,907 It was a very crazy experience. 787 00:44:20,658 --> 00:44:22,576 I spent all day, 788 00:44:22,660 --> 00:44:23,869 nine hours, 789 00:44:24,453 --> 00:44:26,038 stuck in a room with... 790 00:44:26,914 --> 00:44:28,290 FBI agents... 791 00:44:28,916 --> 00:44:29,916 um... 792 00:44:31,627 --> 00:44:35,464 who are in the weapons of mass destruction directorate, 793 00:44:36,507 --> 00:44:38,384 biological countermeasures. 794 00:44:39,843 --> 00:44:41,303 And we talked about... 795 00:44:45,099 --> 00:44:46,392 biohacking, and... 796 00:44:47,434 --> 00:44:48,435 possible... 797 00:44:49,687 --> 00:44:51,271 ramifications... 798 00:44:52,272 --> 00:44:54,983 and how the government wants to treat it. 799 00:44:59,363 --> 00:45:03,701 They're definitely playing the part of the federal government pretty strong. 800 00:45:04,326 --> 00:45:06,161 Like, "We're here to help. 801 00:45:06,829 --> 00:45:08,747 We just want you to cooperate with us 802 00:45:08,831 --> 00:45:12,334 because we're trying to make everybody's lives better." 803 00:45:13,043 --> 00:45:15,045 Like, "Do your part." 804 00:45:21,260 --> 00:45:24,430 We need to start watching the shit we post on Facebook. 805 00:45:24,513 --> 00:45:25,740 Like, I'm not mentioning names. 806 00:45:25,764 --> 00:45:28,142 I didn't mention, like, you or anybody else. 807 00:45:28,225 --> 00:45:29,327 - Thank you. - Here you go, guys. 808 00:45:29,351 --> 00:45:32,354 It was really, really, really, really strange. 809 00:45:32,855 --> 00:45:35,566 This is the story that one of the agents told. 810 00:45:35,649 --> 00:45:39,528 Somebody from Iran ordered some DNA from a company. 811 00:45:39,611 --> 00:45:41,071 FBI shows up, freaked out, 812 00:45:41,155 --> 00:45:45,159 and they basically steamrolled the company into not sending it to Iran, 813 00:45:45,242 --> 00:45:47,327 even though there was nothing wrong with it. 814 00:45:47,411 --> 00:45:48,454 How does that make sense? 815 00:45:48,537 --> 00:45:51,015 And I'm like, "No, that's the kind of shit I'm scared about." Right? 816 00:45:51,039 --> 00:45:53,876 If I tell them, "Hey, I have customers in X country, 817 00:45:53,959 --> 00:45:55,627 which I'm not gonna say..." 818 00:45:55,711 --> 00:45:57,791 There's no reason for you to divulge any information. 819 00:45:57,963 --> 00:46:02,050 It's like they're trying to regulate an ideology, a movement. 820 00:46:02,134 --> 00:46:04,636 What happens, especially with the stuff I'm doing, 821 00:46:04,720 --> 00:46:07,639 when you start getting into, like, human genetic engineering, 822 00:46:07,723 --> 00:46:09,933 from stopping that dying person with cancer 823 00:46:10,017 --> 00:46:10,934 from, like, trying out 824 00:46:11,018 --> 00:46:13,145 - this novel DNA vaccine? - Right. 825 00:46:13,729 --> 00:46:16,857 "No! Just die in... die in peace" or whatever. 826 00:46:16,940 --> 00:46:18,126 "Die in peace." 827 00:46:18,150 --> 00:46:19,860 "Just die, motherfucker." 828 00:46:19,943 --> 00:46:22,613 Yeah. Like, you know, if the tools are there, they're gonna use it 829 00:46:22,696 --> 00:46:24,239 whether they like it or not. 830 00:46:24,740 --> 00:46:27,743 Which side are you gonna be on? 'Cause I know what side I'm gonna be on, 831 00:46:28,243 --> 00:46:30,245 and, like, it's not on the side of the government. 832 00:46:30,329 --> 00:46:31,163 The human side. 833 00:46:31,246 --> 00:46:33,957 Yes, exactly. The fucking motherfucking human side. 834 00:46:34,041 --> 00:46:37,544 Right. You know, I'm just worried that everything's gonna get muddled up 835 00:46:37,628 --> 00:46:39,713 if one person makes one really big mistake. 836 00:46:39,797 --> 00:46:40,964 And then, the whole thing... 837 00:46:41,048 --> 00:46:43,926 There are just no mistakes being made. That's the problem. 838 00:46:44,593 --> 00:46:45,844 Like, what can somebody do? 839 00:47:12,830 --> 00:47:13,997 Can you hear me? 840 00:47:14,915 --> 00:47:16,309 So, how are you feeling? 841 00:47:16,333 --> 00:47:19,044 Like, you know, just generally about going through the treatment? 842 00:47:19,127 --> 00:47:21,213 I'm just worried about that edge case. 843 00:47:21,922 --> 00:47:25,717 If, for some reason, it keeps reproducing, and my body can't kill it, 844 00:47:25,801 --> 00:47:27,678 and it causing an immune response. 845 00:47:27,761 --> 00:47:29,930 Beyond that, I'm... I'm like, uh... 846 00:47:30,013 --> 00:47:31,348 There's a little bit of emotion. 847 00:47:31,723 --> 00:47:33,058 - Yeah. - Uh... 848 00:47:33,141 --> 00:47:35,978 I'm more or less optimistic. 849 00:47:36,353 --> 00:47:38,897 That's good because the emotional experience, 850 00:47:38,981 --> 00:47:40,399 I'm sure, is gonna be... 851 00:47:41,108 --> 00:47:43,026 rigorous, very rigorous, 852 00:47:43,110 --> 00:47:46,238 especially since you're gonna be, really, the public face... 853 00:47:46,905 --> 00:47:49,157 of... of this project. 854 00:47:49,241 --> 00:47:52,911 You know, particularly the testing and testing it yourself, 855 00:47:53,620 --> 00:47:56,164 it's, like, they're gonna come to you, 856 00:47:56,832 --> 00:47:58,667 and they're gonna want to hear from you 857 00:47:58,750 --> 00:48:00,752 the confidence, the strength. 858 00:48:00,836 --> 00:48:02,838 Yeah, I'm with ya. I'm with ya. 859 00:48:02,921 --> 00:48:07,301 Tristan is the ideal person to try this. 860 00:48:07,384 --> 00:48:08,468 Is... More than... 861 00:48:08,552 --> 00:48:11,680 More than probably most of the patients with HIV around the world, 862 00:48:11,763 --> 00:48:16,143 he chose to challenge what was being force-fed him. 863 00:48:16,226 --> 00:48:20,314 I want to say this in just the right way. 864 00:48:21,356 --> 00:48:23,317 Okay? Um... 865 00:48:23,400 --> 00:48:25,319 First responders always get hurt. 866 00:48:26,028 --> 00:48:27,613 They don't always get hurt, 867 00:48:27,988 --> 00:48:30,157 but a certain amount of first responders... 868 00:48:34,828 --> 00:48:37,581 The first one through the fence always gets cut up... 869 00:48:37,873 --> 00:48:40,042 a little bit, but they still keep running. 870 00:48:40,584 --> 00:48:42,061 - Okay, you want a B? - B-11. 871 00:48:42,085 --> 00:48:43,855 - How about a B-1? - Yeah! 872 00:48:43,879 --> 00:48:46,381 That's good. Give me another one. 873 00:48:47,966 --> 00:48:50,928 N... 33, 874 00:48:51,762 --> 00:48:53,472 Who was 33? Was that, uh... 875 00:48:53,555 --> 00:48:55,325 Jesus Christ. 876 00:48:55,349 --> 00:48:58,644 Jesus Christ died when he was 33. That's a very true statement. 877 00:48:58,727 --> 00:49:01,563 - Patrick Ewing. - Patrick Ewing's number, too? 878 00:49:01,647 --> 00:49:03,398 Oh, they're probably gonna get... 879 00:49:03,482 --> 00:49:05,734 Twenty-four years, Nick, I waited for this. 880 00:49:06,234 --> 00:49:07,277 Yep. 881 00:49:07,819 --> 00:49:11,059 Yeah, no. I... I honestly thought that this day was never ever gonna come. 882 00:49:11,114 --> 00:49:11,990 Right. 883 00:49:12,074 --> 00:49:13,325 Me, too. 884 00:49:13,408 --> 00:49:15,428 - It's just a shot. - It's this little vial. 885 00:49:15,452 --> 00:49:18,664 They draw it out, stick it in, and off you go. 886 00:49:18,747 --> 00:49:19,623 It's amazing. 887 00:49:19,706 --> 00:49:22,334 I tell you, it's one expensive shot, my friend. 888 00:49:22,417 --> 00:49:24,044 Yeah... Yeah, well... 889 00:49:24,127 --> 00:49:26,338 - we are talking about drug companies. - Yeah. 890 00:49:26,421 --> 00:49:28,441 It's one expensive shot. 891 00:49:38,141 --> 00:49:39,351 Ah. 892 00:49:43,021 --> 00:49:45,458 Once the needle is in you, he's gonna draw it back. 893 00:49:45,482 --> 00:49:46,817 If he gets fluid... 894 00:49:46,900 --> 00:49:48,902 That's what I'm saying, yeah. 895 00:49:48,986 --> 00:49:50,529 He then will disconnect... 896 00:49:50,612 --> 00:49:52,948 This shot's actually going into his cord? 897 00:49:53,031 --> 00:49:54,074 Yeah. 898 00:49:54,157 --> 00:49:57,077 He said that to you? That he's going to stick it into his spinal cord? 899 00:49:57,160 --> 00:50:00,372 I always thought that it would be some kind of an IV drip or something. 900 00:50:00,455 --> 00:50:01,455 Nope. 901 00:50:01,999 --> 00:50:03,125 Because that is where... 902 00:50:03,208 --> 00:50:04,727 Aren't they worried about damage? 903 00:50:04,751 --> 00:50:08,213 No, because that is how they do a... 904 00:50:08,797 --> 00:50:09,715 A spinal tap. 905 00:50:09,798 --> 00:50:10,674 Yeah, same thing. 906 00:50:10,757 --> 00:50:11,757 Right. 907 00:50:47,711 --> 00:50:49,129 Here we go, Nick. 908 00:50:56,219 --> 00:51:00,015 So, you don't go straight in. You go in from the side. 909 00:51:00,474 --> 00:51:03,185 Once you're in there, you can let go of the skin. 910 00:51:03,727 --> 00:51:04,561 Right? 911 00:51:04,644 --> 00:51:08,231 Yeah, the purpose of the pinching is to cause tension on your skin. 912 00:51:08,356 --> 00:51:11,234 So... Like, if you didn't pinch, I've actually tried this before, 913 00:51:11,318 --> 00:51:12,944 and you try to put the needle in, 914 00:51:13,028 --> 00:51:15,781 your skin will just flex in against the needle 915 00:51:15,864 --> 00:51:17,657 for a really long time, 916 00:51:17,741 --> 00:51:19,451 'cause your skin's really stretchy. 917 00:51:19,534 --> 00:51:21,411 - So, you gotta pull... - Yeah. 918 00:51:21,495 --> 00:51:24,098 - Yeah, just pinch and pull. - Pull, and right there. 919 00:51:24,122 --> 00:51:27,000 I'll pull out all of this, and get it nice and ready. 920 00:51:28,418 --> 00:51:30,295 Yes. Plenty of syringes. 921 00:51:34,508 --> 00:51:37,511 "Mix A into B, shake." 922 00:51:37,594 --> 00:51:39,387 So, this one has the circle. 923 00:51:39,471 --> 00:51:41,681 This one has the transfection reagent. 924 00:51:42,724 --> 00:51:44,142 And you're gonna mix them. 925 00:51:46,645 --> 00:51:48,480 Do you have gloves? Do you have gloves? 926 00:51:48,563 --> 00:51:51,191 Just don't... don't, uh... Don't... 927 00:51:51,274 --> 00:51:53,127 - Don't... - Try not to touch the inside. 928 00:51:53,151 --> 00:51:54,151 Okay. 929 00:51:54,194 --> 00:51:56,196 Tristan Roberts is... 930 00:51:57,405 --> 00:51:59,449 self-experimenting... 931 00:51:59,533 --> 00:52:01,284 Oh, it's, like, stuck at the bottom. 932 00:52:01,368 --> 00:52:03,578 Okay, so you'll use the, uh, needle. 933 00:52:03,662 --> 00:52:05,705 You'll use the syringe to suck it up. 934 00:52:06,039 --> 00:52:09,126 ...a new and unapproved treatment. 935 00:52:09,751 --> 00:52:10,752 Oh, that's just a guard. 936 00:52:10,836 --> 00:52:13,436 Do we need to say "unapproved"? We don't need to say "unapproved." 937 00:52:13,505 --> 00:52:15,257 We'll say "experimental." 938 00:52:15,549 --> 00:52:16,549 All right. 939 00:52:19,302 --> 00:52:20,637 - Got it. - Okay. 940 00:52:20,720 --> 00:52:21,930 Guard that. 941 00:52:26,434 --> 00:52:27,602 Okay. 942 00:52:27,686 --> 00:52:28,687 Ready? 943 00:52:53,253 --> 00:52:55,130 He, uh, he got the dose 944 00:52:55,213 --> 00:52:57,841 and then started to develop a headache. 945 00:52:57,924 --> 00:53:01,178 And he was nauseous. And then he had muscular pain, 946 00:53:01,261 --> 00:53:02,321 and he couldn't describe it. 947 00:53:02,345 --> 00:53:04,890 And then he said, "I think my body is shutting down." 948 00:53:05,265 --> 00:53:07,309 They're putting the needle into his side, 949 00:53:07,392 --> 00:53:10,228 so just think about all the stuff they gotta go through 950 00:53:10,312 --> 00:53:12,230 to get to that spinal cord. 951 00:53:12,314 --> 00:53:13,732 It's, uh, you know, it's just... 952 00:53:13,815 --> 00:53:15,567 Scary, really scary. 953 00:53:16,067 --> 00:53:18,320 Yeah. Yeah. 954 00:53:19,237 --> 00:53:20,965 Here we are thinking there's this great hope 955 00:53:20,989 --> 00:53:22,574 and there's this medication for him. 956 00:53:22,657 --> 00:53:26,036 But maybe... maybe he... maybe his body can't do it. 957 00:53:26,119 --> 00:53:27,662 - He's SMA type 1. - I know. 958 00:53:27,746 --> 00:53:30,624 He's already on borrowed time. He's 24. 959 00:53:30,916 --> 00:53:33,752 He's not trached. He doesn't have a lot of reserve. 960 00:53:33,835 --> 00:53:35,754 I don't know if we can go forward, 961 00:53:35,837 --> 00:53:38,649 because if this is gonna happen again, I don't know if he can take it again. 962 00:53:38,673 --> 00:53:40,175 I don't know. 963 00:53:41,801 --> 00:53:42,844 I just, uh... 964 00:53:44,638 --> 00:53:46,848 But hopefully we'll get out of here soon. 965 00:53:47,766 --> 00:53:49,926 - I think we're gonna be out of here soon. - I hope so. 966 00:55:32,329 --> 00:55:34,664 I am so happy for you guys. 967 00:55:34,748 --> 00:55:35,915 He's determined. 968 00:55:35,999 --> 00:55:38,168 Is everything good with the insurance now? 969 00:55:38,251 --> 00:55:40,045 They're not gonna let us know until, 970 00:55:40,128 --> 00:55:42,047 they're saying, like, this coming week. 971 00:55:45,091 --> 00:55:46,610 - It's very surreal. - Yeah. 972 00:55:46,634 --> 00:55:48,970 You know, it doesn't feel like it's actually gonna happen. 973 00:55:49,054 --> 00:55:51,973 And this will be it for him? He doesn't have to do another surgery... 974 00:55:52,057 --> 00:55:54,017 They expect it to last forever. 975 00:55:54,100 --> 00:55:55,602 Okay. That's very cool. 976 00:55:56,102 --> 00:55:57,102 So... 977 00:55:59,773 --> 00:56:02,692 It really means a lot that we had all you guys 978 00:56:02,776 --> 00:56:06,112 here with us and going through this entire journey with us. 979 00:56:06,905 --> 00:56:09,074 Thank you for supporting us and for supporting him. 980 00:56:12,494 --> 00:56:13,661 We love you, Jackson! 981 00:56:13,745 --> 00:56:15,705 Do you want to say anything? 982 00:56:15,789 --> 00:56:17,499 Thanks. 983 00:56:29,427 --> 00:56:31,596 "Here's hoping you bounce back quickly. 984 00:56:31,679 --> 00:56:34,182 Good luck, Jackson. Love, Cody and Deanna." 985 00:56:34,891 --> 00:56:39,104 "King Jack, you will win this match. Danielle, Gary, and Mimi." 986 00:56:39,187 --> 00:56:41,481 "Jackson, continue your quest for the stars. 987 00:56:41,564 --> 00:56:42,899 Love you, Mimi and Pop-Pop. 988 00:56:42,982 --> 00:56:44,567 Good luck with the surgery." 989 00:56:45,235 --> 00:56:46,945 That's Jackson on the moon. 990 00:57:06,714 --> 00:57:07,715 I got you. 991 00:57:10,093 --> 00:57:11,094 Okay. 992 00:57:14,347 --> 00:57:15,723 - Ahh. - Okay. 993 00:57:16,558 --> 00:57:17,558 That's it. 994 00:57:19,519 --> 00:57:20,519 That's it. 995 00:57:23,189 --> 00:57:24,858 Mm-hmm. 996 00:57:26,985 --> 00:57:28,027 Oh, man. 997 00:57:29,362 --> 00:57:30,989 You know, it all went... 998 00:57:31,573 --> 00:57:34,159 It all went bad so fast. 999 00:57:34,909 --> 00:57:37,162 You know what the worst part is? 1000 00:57:37,996 --> 00:57:40,498 It's a very rare side effect. 1001 00:57:41,666 --> 00:57:44,461 I believe only a handful... 1002 00:57:45,545 --> 00:57:49,924 of other patients had this reaction. 1003 00:57:51,926 --> 00:57:56,639 Because the swelling was in my brain, 1004 00:57:57,140 --> 00:57:59,601 I had a very severe headache. 1005 00:58:00,810 --> 00:58:03,313 And I had double vision, as well. 1006 00:58:07,442 --> 00:58:09,444 Ma, there's a bee around me. 1007 00:58:15,325 --> 00:58:18,828 Being outside is more a pain in the ass than anything else. 1008 00:58:20,246 --> 00:58:22,832 Unfortunately, because I do enjoy it. 1009 00:58:28,796 --> 00:58:30,673 I have one of two choices. 1010 00:58:30,757 --> 00:58:32,717 SMA will kill me. 1011 00:58:33,593 --> 00:58:39,307 - These new drugs might... - might help me. 1012 00:58:40,141 --> 00:58:44,020 So, it's either lose... 1013 00:58:45,313 --> 00:58:46,940 or throw a Hail Mary. 1014 00:58:47,524 --> 00:58:49,984 I'll throw a Hail Mary every time. 1015 00:58:52,612 --> 00:58:55,573 There's always something new on the horizon. 1016 00:58:57,200 --> 00:59:02,539 Eventually something will be right for me. 1017 00:59:02,622 --> 00:59:04,958 I just need to be patient. 1018 00:59:22,058 --> 00:59:22,934 Oh boy. 1019 00:59:23,017 --> 00:59:26,521 This tells you, like, before surgery and then day of surgery. 1020 00:59:26,854 --> 00:59:28,648 There's a sample packing list. 1021 00:59:28,731 --> 00:59:30,733 Try to squeeze this in here. 1022 00:59:31,150 --> 00:59:34,070 Um, "Luxturna will be surgically injected beneath your retina 1023 00:59:34,153 --> 00:59:35,905 by an experienced surgical team. 1024 00:59:35,989 --> 00:59:38,866 The entire procedure usually takes about 90 minutes. 1025 00:59:39,742 --> 00:59:42,579 After surgery, a patch will be placed over your eye, 1026 00:59:42,662 --> 00:59:45,915 and you may be taken to a post-operative area 1027 00:59:45,999 --> 00:59:47,917 where you will lie on your back, facing up, 1028 00:59:48,001 --> 00:59:50,003 as directed by your health-care professional." 1029 00:59:50,086 --> 00:59:52,547 I thought he was gonna be facedown for a while. 1030 00:59:52,630 --> 00:59:54,674 Putting four stuffed animals in there. 1031 00:59:59,721 --> 01:00:02,849 Then this just goes over the scary stuff, the side effects. 1032 01:00:04,851 --> 01:00:05,852 We'll skip that. 1033 01:00:05,935 --> 01:00:08,271 Oh, God, it's heavy. 1034 01:00:09,147 --> 01:00:10,356 Ah. 1035 01:00:11,733 --> 01:00:13,484 We should make a story. 1036 01:00:14,736 --> 01:00:16,613 How does the story start? 1037 01:00:17,322 --> 01:00:19,162 - Uh... - Watch your head. 1038 01:00:19,240 --> 01:00:20,700 There's a little boy... 1039 01:00:21,576 --> 01:00:25,038 and the little boy goes to sleep and he has a dream, right? 1040 01:00:25,955 --> 01:00:27,624 What's he have a dream about? 1041 01:00:31,878 --> 01:00:33,212 He wants to be Rocky. 1042 01:00:33,296 --> 01:00:34,464 He's Rocky, right? 1043 01:00:34,547 --> 01:00:35,547 Yeah. 1044 01:00:35,590 --> 01:00:37,800 And he's about to have surgery. 1045 01:00:37,967 --> 01:00:40,094 Yeah, he's going to. 1046 01:00:40,178 --> 01:00:42,448 - He's nervous, and he's scared. - Yeah. 1047 01:00:42,472 --> 01:00:45,224 Yeah, but he climbs. He runs up the stairs. 1048 01:00:47,060 --> 01:00:49,228 We're gonna figure out the ending, right? 1049 01:00:50,021 --> 01:00:51,021 Yeah. 1050 01:00:56,986 --> 01:00:58,071 And we're live. 1051 01:00:58,154 --> 01:00:59,530 My name is Aaron Traywick. 1052 01:00:59,614 --> 01:01:03,534 I am the CEO of Ascendance Biomedical. 1053 01:01:03,618 --> 01:01:05,495 We are here with Tristan Roberts. 1054 01:01:05,870 --> 01:01:10,333 Um... We do not advise that anyone watching this video... 1055 01:01:10,875 --> 01:01:13,795 um, do what is about to be done here. 1056 01:01:13,878 --> 01:01:16,130 These compounds are not for human consumption. 1057 01:01:16,214 --> 01:01:18,424 They are for research purposes only. 1058 01:01:18,841 --> 01:01:24,013 Tristan Roberts is completely within his rights to, uh, self-experiment 1059 01:01:24,097 --> 01:01:27,725 in any way that he deems medically appropriate. 1060 01:01:27,809 --> 01:01:29,727 What is the biggest risk with this? 1061 01:01:29,811 --> 01:01:32,355 What... What risks do you see, uh, with what you're doing? 1062 01:01:32,689 --> 01:01:34,649 The risk is that... 1063 01:01:35,441 --> 01:01:38,611 it does cause some sort of immune response in my body. 1064 01:01:40,863 --> 01:01:44,659 But there's always risk in making progress. 1065 01:01:49,163 --> 01:01:51,082 You should put it down the side of the... 1066 01:01:51,165 --> 01:01:52,375 - Okay. - Yeah. 1067 01:02:00,675 --> 01:02:02,427 Oof. All right. 1068 01:02:02,510 --> 01:02:04,053 Got some air bubbles in there. 1069 01:02:08,766 --> 01:02:10,226 Are they at the bottom? 1070 01:02:12,562 --> 01:02:15,523 I want to dedicate this to all the people who have died 1071 01:02:15,606 --> 01:02:17,775 while not being able to access treatment.