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Would you like to inspect the original subtitles? These are the user uploaded subtitles that are being translated: 1 00:01:10,738 --> 00:01:13,741 - Come on! 2 00:01:13,741 --> 00:01:15,243 Come on! 3 00:01:15,243 --> 00:01:17,111 Ohh! 4 00:01:17,611 --> 00:01:19,613 Dada! 5 00:01:19,613 --> 00:01:22,082 Alec animal! 6 00:01:22,583 --> 00:01:23,951 Come on! 7 00:01:23,951 --> 00:01:26,254 Come on, Alec! Good boy! 8 00:01:26,254 --> 00:01:28,622 Come on, Alec! Whoa! 9 00:01:28,622 --> 00:01:31,159 That first step is a doozy, isn't it? 10 00:01:31,592 --> 00:01:33,627 Alec! 11 00:01:34,795 --> 00:01:36,630 *mellow music 12 00:01:36,630 --> 00:01:38,098 Nicole interview, take two, soft sticks. 13 00:01:41,635 --> 00:01:42,770 All right, James interview, 14 00:01:42,770 --> 00:01:44,272 take one, soft sticks. 15 00:01:47,975 --> 00:01:51,845 I remember every single day. 16 00:01:52,680 --> 00:01:54,648 Birthdays... 17 00:01:54,648 --> 00:01:56,650 vacations... 18 00:01:56,650 --> 00:01:57,951 weekend trips. 19 00:01:59,653 --> 00:02:02,690 Watching him grow up as a toddler to a young man, 20 00:02:02,690 --> 00:02:07,161 to a handsome six-foot man, it was the best. 21 00:02:07,661 --> 00:02:09,663 He wasn't the oldest, but he acted like the big 22 00:02:09,663 --> 00:02:11,699 brother to everybody. 23 00:02:11,699 --> 00:02:13,133 Every extent of the word when you say "big brother," 24 00:02:13,133 --> 00:02:14,001 that was Alec. 25 00:02:14,001 --> 00:02:15,703 - Now! - Five... 26 00:02:15,703 --> 00:02:17,171 - Go! - Four... 27 00:02:17,171 --> 00:02:18,306 - Three, two, one! 28 00:02:19,307 --> 00:02:21,842 I remember him always being funny, laughing. 29 00:02:23,711 --> 00:02:25,145 Aw, come on. 30 00:02:25,145 --> 00:02:27,548 You're supposed to be asleep. 31 00:02:27,548 --> 00:02:30,884 I remember Alec always had a hat on. 32 00:02:30,884 --> 00:02:34,688 Those were his two addictions: sunglasses and baseball caps. 33 00:02:37,858 --> 00:02:40,894 I remember all of the Fourth of July weekends. 34 00:02:42,730 --> 00:02:45,699 Fourth of July was his favorite holiday ever. 35 00:02:45,699 --> 00:02:47,034 He could do without the Christmas 36 00:02:47,034 --> 00:02:50,170 presents, just give him fireworks. [laughs] 37 00:02:53,707 --> 00:02:55,543 Um... 38 00:02:58,612 --> 00:03:00,180 but... 39 00:03:02,049 --> 00:03:05,052 I have a hard time remembering... 40 00:03:05,253 --> 00:03:08,088 things that happened... 41 00:03:08,389 --> 00:03:11,725 from the time his body was found until 42 00:03:11,725 --> 00:03:13,727 the day of the funeral. 43 00:03:14,928 --> 00:03:21,902 *sparse piano music 44 00:03:58,972 --> 00:04:00,107 Were you able to start the car? 45 00:04:00,107 --> 00:04:01,241 Yup. 46 00:04:01,241 --> 00:04:03,411 I think the car is started. 47 00:04:03,411 --> 00:04:05,646 Car is started. 48 00:04:26,867 --> 00:04:33,173 *sparse tense music 49 00:04:35,343 --> 00:04:37,144 Which building is it that we're in? 50 00:04:37,144 --> 00:04:38,812 We're in the Cap-- we're in the main building? 51 00:04:38,812 --> 00:04:40,113 Okay. 52 00:04:43,684 --> 00:04:46,286 We made a pact that no other family will go through the 53 00:04:46,286 --> 00:04:48,689 pain that we're going through. 54 00:04:49,523 --> 00:04:53,461 We're trying to make a change, a difference in the system. 55 00:04:53,461 --> 00:04:56,330 I don't wanna see anyone else suffer. 56 00:04:56,330 --> 00:04:59,333 I hear too many names along with Alec. 57 00:04:59,333 --> 00:05:01,702 Enough is enough. 58 00:05:02,035 --> 00:05:04,304 So we have you, um, on that side of the table. 59 00:05:04,304 --> 00:05:05,939 - Okay. - Okay. 60 00:05:05,939 --> 00:05:07,741 Never, ever pictured myself to be the type 61 00:05:07,741 --> 00:05:10,978 of person to be at the Capitol fighting for something 62 00:05:10,978 --> 00:05:12,846 like this. 63 00:05:13,681 --> 00:05:15,983 I think it's a way for me to funnel my grief into 64 00:05:15,983 --> 00:05:18,719 something positive. 65 00:05:18,719 --> 00:05:22,856 I think it's a way to try to honor Alec. 66 00:05:22,856 --> 00:05:25,726 It's a way to... 67 00:05:26,394 --> 00:05:28,862 make some really positive changes that are gonna affect 68 00:05:28,862 --> 00:05:31,064 millions of people. 69 00:05:33,066 --> 00:05:35,068 - Good morning. - Good morning. 70 00:05:35,436 --> 00:05:37,204 - Hi, Jim Abeler. - Nicole. 71 00:05:37,204 --> 00:05:38,506 - Nice to meet you. - James. 72 00:05:38,506 --> 00:05:39,006 - Hey, James. - Hi. 73 00:05:39,006 --> 00:05:41,041 Nice to meet you. 74 00:05:48,382 --> 00:05:49,349 We're here today to discuss the issue, 75 00:05:49,349 --> 00:05:53,053 to hear stories from all of these brave people, 76 00:05:53,053 --> 00:05:55,923 and to work together to form solutions moving forward. 77 00:05:55,923 --> 00:05:57,391 Thank you. 78 00:05:57,591 --> 00:06:00,193 I'm scared; I'm scared to turn 26 and get off my 79 00:06:00,193 --> 00:06:01,895 parents' insurance. 80 00:06:01,895 --> 00:06:03,764 And I don't know what's gonna happen when that 81 00:06:03,764 --> 00:06:06,033 happens, and it's... 82 00:06:06,033 --> 00:06:08,101 all about future. 83 00:06:08,101 --> 00:06:10,237 This insulin pen that we bought in the United States 84 00:06:10,237 --> 00:06:12,406 cost us 140 dollars. 85 00:06:12,406 --> 00:06:15,409 It would last us, um, about a week. 86 00:06:15,409 --> 00:06:18,245 This is an insulin pen that we bought in Taiwan. 87 00:06:18,245 --> 00:06:19,913 It cost us eight dollars. 88 00:06:19,913 --> 00:06:22,416 I mean, you could see; these are-- they're called 89 00:06:22,416 --> 00:06:24,251 "NovoRapid" instead of "NovoLog," 90 00:06:24,251 --> 00:06:26,086 but they are exactly the same thing. 91 00:06:26,086 --> 00:06:28,121 Without insulin, I am dead, 92 00:06:28,121 --> 00:06:31,224 my little brother is dead, and millions of other people 93 00:06:31,224 --> 00:06:32,192 are dead. 94 00:06:32,192 --> 00:06:35,128 Our next testifiers are Nicole Smith-Holt 95 00:06:35,128 --> 00:06:37,397 and James Holt, Jr., and, uh, I believe, uh, 96 00:06:37,397 --> 00:06:40,400 James Holt, Jr. is gonna, uh, start it off. 97 00:06:41,068 --> 00:06:43,270 I am Alec's father. 98 00:06:44,104 --> 00:06:47,274 Can you even imagine what it was like to tell people 99 00:06:47,274 --> 00:06:49,477 that your son died at 26... 100 00:06:49,477 --> 00:06:52,946 because he struggled to afford the one medicine created to 101 00:06:52,946 --> 00:06:54,982 save his life? 102 00:06:55,516 --> 00:06:58,986 In many cases, it is cheaper to book a round-trip flight 103 00:06:58,986 --> 00:07:02,122 and a hotel to a foreign country to purchase insulin 104 00:07:02,122 --> 00:07:04,124 than it is to buy it here in the US. 105 00:07:04,124 --> 00:07:06,827 My son would still be alive today if his treatment 106 00:07:06,827 --> 00:07:08,095 was affordable. 107 00:07:08,095 --> 00:07:09,797 Thank you. 108 00:07:12,800 --> 00:07:14,602 My name is Nicole, 109 00:07:14,602 --> 00:07:16,970 and I'm Alec's mom. 110 00:07:20,007 --> 00:07:22,142 I just need a second. 111 00:07:23,911 --> 00:07:25,979 But I'm here today to share a very painful and personal 112 00:07:25,979 --> 00:07:29,316 account of the doth-- death of my son Alec. 113 00:07:31,218 --> 00:07:34,622 In 2015, Alec was just turning 24 and was diagnosed 114 00:07:34,622 --> 00:07:37,157 with type 1 diabetes. 115 00:07:37,157 --> 00:07:40,027 This came to a surprise for our family because we have no 116 00:07:40,027 --> 00:07:45,032 family history of this, and he was always healthy and active. 117 00:07:45,533 --> 00:07:48,368 Alec handled his diabetes well; he adjusted his diet, 118 00:07:48,368 --> 00:07:51,338 he handled his daily regimen, he took responsibility of his 119 00:07:51,338 --> 00:07:53,907 life and for his treatments. 120 00:07:53,907 --> 00:07:55,909 While still under my insurance, his bills at the 121 00:07:55,909 --> 00:07:58,311 pharmacy would range between two and 300 dollars 122 00:07:58,311 --> 00:08:00,881 out-of-pocket per month. 123 00:08:01,081 --> 00:08:04,351 In May of 2017, Alec turned 26. 124 00:08:04,351 --> 00:08:06,186 Alec was no longer eligible to be covered 125 00:08:06,186 --> 00:08:08,388 under my health insurance. 126 00:08:10,057 --> 00:08:12,392 His salary was approximately 40,000 dollars 127 00:08:12,392 --> 00:08:16,196 a year, and that's fairly decent for the Midwest. 128 00:08:16,196 --> 00:08:19,667 But because of his salary, he was not eligible for state or 129 00:08:19,667 --> 00:08:23,036 federal subsidy through insurance, 130 00:08:23,036 --> 00:08:25,372 and he was left with just two options: 131 00:08:25,372 --> 00:08:28,041 one, pay extremely high premium and deductible... 132 00:08:29,910 --> 00:08:32,079 or go without insurance and pay out-of-pocket at the 133 00:08:32,079 --> 00:08:35,916 pharmacy, and pray nothing major happens. 134 00:08:35,916 --> 00:08:39,587 Alec made the difficult decision to forgo insurance, 135 00:08:39,587 --> 00:08:42,055 but he did not have the money that the pharmacist was 136 00:08:42,055 --> 00:08:45,192 charging him for insulin and supplies: 137 00:08:45,192 --> 00:08:47,561 1300 dollars. 138 00:08:48,228 --> 00:08:51,899 That's a lot of money. 139 00:08:55,736 --> 00:08:59,406 On June 20th, 2017... 140 00:09:00,273 --> 00:09:03,410 the last day I saw my son... 141 00:09:03,911 --> 00:09:07,114 he stopped by the house with friends. 142 00:09:07,447 --> 00:09:09,717 He informed me that he would be picking up his meds in the 143 00:09:09,717 --> 00:09:12,152 next day or two. 144 00:09:12,620 --> 00:09:15,255 We believe he felt he could stretch out his remaining 145 00:09:15,255 --> 00:09:19,092 insulin until his payday on June 30th. 146 00:09:19,092 --> 00:09:22,095 *sensitive ambient music 147 00:09:22,095 --> 00:09:24,965 He didn't call and ask for help. 148 00:09:26,600 --> 00:09:28,636 Um... 149 00:09:29,102 --> 00:09:32,272 so he began rationing what he had. 150 00:09:33,140 --> 00:09:35,108 June 27... 151 00:09:35,776 --> 00:09:37,577 Alec's girlfriend had been trying to reach him 152 00:09:37,577 --> 00:09:39,980 with no success. 153 00:09:39,980 --> 00:09:41,581 She went to his apartment to find out why he was not 154 00:09:41,581 --> 00:09:44,484 responding to calls or texts. 155 00:09:44,685 --> 00:09:47,120 His car was in the parking lot, he was not answering his 156 00:09:47,120 --> 00:09:49,456 door, and she could hear his phone ringing, 157 00:09:49,456 --> 00:09:51,458 and got worried. 158 00:09:51,458 --> 00:09:53,994 She found an unlocked window and climbed in to find him 159 00:09:53,994 --> 00:09:56,630 down on his bedroom floor. 160 00:09:58,165 --> 00:10:01,101 Alec was pronounced dead on the scene. 161 00:10:05,005 --> 00:10:08,308 He aged off of my insurance June 1st. 162 00:10:09,009 --> 00:10:15,148 His body was found on June 27th of 2017. 163 00:10:15,148 --> 00:10:18,485 You know, it wasn't even a month. 164 00:10:19,820 --> 00:10:22,455 He could not afford to stay alive. 165 00:10:34,201 --> 00:10:36,336 The cost of prescription drugs in general 166 00:10:36,336 --> 00:10:38,338 and insulin in particular-- 167 00:10:38,338 --> 00:10:41,041 are very, very high. 168 00:10:41,041 --> 00:10:44,377 This problem has been quite difficult to solve in the US. 169 00:10:44,377 --> 00:10:47,380 People have been talking about it for years. 170 00:10:47,881 --> 00:10:53,520 Insulin was first discovered in 1921 by Banting and Best. 171 00:10:53,520 --> 00:10:56,189 Banting and Best sold the patent for insulin discovery 172 00:10:56,189 --> 00:10:59,526 for one dollar-- one Canadian dollar-- because they felt 173 00:10:59,526 --> 00:11:02,362 that no one should profit off this. 174 00:11:02,362 --> 00:11:06,834 In 1996, the first analog insulin was sold 175 00:11:06,834 --> 00:11:09,369 for 21 dollars a vial. 176 00:11:09,369 --> 00:11:11,538 You come to 2019... 177 00:11:11,538 --> 00:11:14,374 it goes all the way up to almost 300 dollars-- 178 00:11:14,374 --> 00:11:17,577 over a 1,000 percent price increase. 179 00:11:17,911 --> 00:11:20,714 Three companies-- Novo Nordisk, Sanofi, 180 00:11:20,714 --> 00:11:23,851 and Eli Lilly-- manufacture the vast majority of insulin 181 00:11:23,851 --> 00:11:26,453 that's sold in the US. 182 00:11:26,754 --> 00:11:29,389 Every time one company increases their price, 183 00:11:29,389 --> 00:11:32,225 the other one goes up by the same amount-- 184 00:11:32,225 --> 00:11:34,261 lockstep. 185 00:11:34,594 --> 00:11:37,397 And this has been going on for, like, 20 years. 186 00:11:37,397 --> 00:11:40,233 Recent studies show that insulin can be manufactured 187 00:11:40,233 --> 00:11:44,738 for as low as three to five dollars for a one-month vial. 188 00:11:44,738 --> 00:11:45,973 Let's just play with some math here. 189 00:11:45,973 --> 00:11:48,776 I mean, if it costs five dollars to manufacture a vial 190 00:11:48,776 --> 00:11:52,712 of insulin, and it's priced at 300 dollars per vial, 191 00:11:52,712 --> 00:11:56,283 that's over a 5,000 percent change. 192 00:11:58,651 --> 00:12:01,889 You could get that same vial of insulin for around 10 to 15 193 00:12:01,889 --> 00:12:04,758 dollars in some countries. 194 00:12:05,258 --> 00:12:09,229 And so, in the United States, we have to pay unreasonable 195 00:12:09,229 --> 00:12:11,598 amounts, and... 196 00:12:12,766 --> 00:12:13,934 that's killing people! 197 00:12:13,934 --> 00:12:16,436 When you have to hear this over and over and over again, 198 00:12:16,436 --> 00:12:18,906 it's almost like you are... 199 00:12:18,906 --> 00:12:22,442 trying to beat down a-- a brick wall 200 00:12:22,442 --> 00:12:25,145 with your bare hands to get people to really understand this 201 00:12:25,145 --> 00:12:29,316 is real, this is today, and we gotta change this system. 202 00:12:29,316 --> 00:12:31,618 I thought we were the only family that was experiencing 203 00:12:31,618 --> 00:12:33,753 these type of things, um... 204 00:12:33,753 --> 00:12:35,588 the only ones that were having issues with 205 00:12:35,588 --> 00:12:37,290 affordability of insulin. 206 00:12:37,290 --> 00:12:39,592 And when I-- when all this came to light, 207 00:12:39,592 --> 00:12:42,329 I was like, "Hell no! 208 00:12:42,329 --> 00:12:44,631 This has to stop." 209 00:12:44,631 --> 00:12:50,637 *dramatic ethereal music 210 00:13:00,513 --> 00:13:11,324 *tense ambient music 211 00:13:17,397 --> 00:13:19,366 I take care of people with diabetes 212 00:13:19,366 --> 00:13:22,836 every day, many of whom are on insulin. 213 00:13:23,170 --> 00:13:26,706 Diabetes is a disease of elevated blood sugars. 214 00:13:26,706 --> 00:13:30,243 The difference between type 1 and type 2? 215 00:13:30,243 --> 00:13:33,981 Type 2 diabetes is much more common and prevalent in the 216 00:13:33,981 --> 00:13:36,383 United States and throughout the world. 217 00:13:36,383 --> 00:13:39,887 It's more a disease of the efficiency with which insulin 218 00:13:39,887 --> 00:13:43,991 works, so insulin is produced but it does not work 219 00:13:43,991 --> 00:13:46,526 efficiently in doing its job, 220 00:13:46,526 --> 00:13:50,864 and that's generally due to that person's lifestyle. 221 00:13:51,198 --> 00:13:55,235 In type 1, it's an autoimmune disease. 222 00:13:55,235 --> 00:13:58,238 Your body destroys the beta cells of the pancreas, 223 00:13:58,238 --> 00:14:01,875 and the pancreas ceases to produce insulin. 224 00:14:02,542 --> 00:14:05,378 If you don't have diabetes, your pancreas produces a 225 00:14:05,378 --> 00:14:08,415 little bit of insulin all the time. 226 00:14:08,415 --> 00:14:12,385 Insulin's job is to get glucose from the blood 227 00:14:12,385 --> 00:14:14,387 into the cell. 228 00:14:14,387 --> 00:14:16,023 When you eat, your blood glucose, 229 00:14:16,023 --> 00:14:18,391 which is the blood sugar, will go up, 230 00:14:18,391 --> 00:14:22,729 and your body will match that with insulin so you don't 231 00:14:22,729 --> 00:14:25,398 overshoot and you don't have low sugars. 232 00:14:25,398 --> 00:14:27,901 Without that insulin, you will have serious 233 00:14:27,901 --> 00:14:29,269 medical consequences. 234 00:14:29,269 --> 00:14:31,438 Your body will start to shut down, 235 00:14:31,438 --> 00:14:35,275 it can lead to a condition called diabetic ketoacidosis. 236 00:14:35,275 --> 00:14:38,912 Diabetic ketoacidosis or DKA-- 237 00:14:38,912 --> 00:14:42,449 if your blood sugars are very high and it's not treated, 238 00:14:42,449 --> 00:14:45,285 it starts turning into ketones, 239 00:14:45,285 --> 00:14:49,289 and ketones will produce acid in the blood. 240 00:14:50,123 --> 00:14:53,593 The person who has type 1 diabetes will not survive 241 00:14:53,593 --> 00:14:56,629 without taking insulin. 242 00:14:56,629 --> 00:14:58,966 Along with testing of blood sugars, 243 00:14:58,966 --> 00:15:01,935 the insulin has to be taken many times a day, 244 00:15:01,935 --> 00:15:04,671 seven days a week, 365 days a year. 245 00:15:04,671 --> 00:15:07,674 There's no break to that. 246 00:15:08,141 --> 00:15:12,645 I would actually die quicker from not using insulin 247 00:15:12,645 --> 00:15:15,448 than I would from-- from thirst. 248 00:15:15,448 --> 00:15:18,651 There's no way to prevent it as far as we know at this 249 00:15:18,651 --> 00:15:22,489 moment, and there's no cure for it. 250 00:15:37,937 --> 00:15:39,806 *Come on, it's lovely weather 251 00:15:39,806 --> 00:15:42,475 *For a sleigh ride together with you โ™ช 252 00:15:42,475 --> 00:15:44,644 I love Christmas music. 253 00:15:44,644 --> 00:15:47,014 I'm the annoying friend that, when it's Christmas in July, 254 00:15:47,014 --> 00:15:49,649 I listen to Christmas music. 255 00:15:51,884 --> 00:15:53,120 I don't like this song! 256 00:15:57,724 --> 00:16:10,670 *mellow ambient music 257 00:16:10,670 --> 00:16:12,505 I was diagnosed with type 1 258 00:16:12,505 --> 00:16:15,508 diabetes when I was 19 months old. 259 00:16:16,509 --> 00:16:20,713 They almost lost me when I was diagnosed. 260 00:16:20,913 --> 00:16:23,916 I went into a coma for nine days. 261 00:16:24,251 --> 00:16:27,554 And Emma was seven years old when she was diagnosed-- 262 00:16:27,554 --> 00:16:29,389 seven and a half. 263 00:16:29,389 --> 00:16:30,990 And what do you need insulin for? 264 00:16:30,990 --> 00:16:33,160 My diabetes. 265 00:16:33,160 --> 00:16:35,862 But why are you doing a shot? 266 00:16:35,862 --> 00:16:38,698 'Cause my pancreas doesn't work. 267 00:16:38,698 --> 00:16:40,867 I feel like almost like my brain just stopped 268 00:16:40,867 --> 00:16:43,170 working, I was so consumed with the fact that now 269 00:16:43,170 --> 00:16:46,139 my child has this disease. 270 00:16:46,139 --> 00:16:47,674 Cool. 271 00:16:47,674 --> 00:16:49,876 She wasn't shocked. 272 00:16:49,876 --> 00:16:51,844 She was laying in the bed like... 273 00:16:51,844 --> 00:16:53,180 "Cool, now I'm closer to Mom!" 274 00:16:53,180 --> 00:16:55,182 And I was just like... 275 00:16:55,182 --> 00:16:57,084 "[sighs]." 276 00:16:58,017 --> 00:17:02,555 She had no idea what was gonna happen after that. 277 00:17:02,555 --> 00:17:03,723 Yeah! 278 00:17:04,157 --> 00:17:05,392 Yeah! 279 00:17:05,892 --> 00:17:07,594 Yeah! 280 00:17:08,295 --> 00:17:11,598 So how long have you had type 1 diabetes? 281 00:17:11,598 --> 00:17:12,832 Four years. 282 00:17:12,832 --> 00:17:14,734 And when you found out that you had type 1 diabetes, 283 00:17:14,734 --> 00:17:17,070 how did you feel? 284 00:17:17,904 --> 00:17:20,039 Pretty scared. 285 00:17:20,039 --> 00:17:22,575 'Cause I kinda didn't like needles. 286 00:17:24,744 --> 00:17:27,780 Type 1 brought Emma and I closer. 287 00:17:28,115 --> 00:17:30,917 I mean, we're both checking our blood sugar, 288 00:17:30,917 --> 00:17:33,620 we're counting carbs, we're... 289 00:17:33,620 --> 00:17:35,722 grabbing insulin for one or the other, 290 00:17:35,722 --> 00:17:38,591 or doing her injections. 291 00:17:41,094 --> 00:17:43,763 Right before she was diagnosed, 292 00:17:43,763 --> 00:17:46,899 I rationed insulin because the copays were too expensive 293 00:17:46,899 --> 00:17:48,601 for me to pay. 294 00:17:48,601 --> 00:17:51,238 There was no money to buy it and... 295 00:17:51,238 --> 00:17:53,973 I didn't know what else to do. 296 00:17:54,441 --> 00:17:57,910 And ended up going into DKA and ended up in ICU for 297 00:17:57,910 --> 00:17:59,779 three days... 298 00:17:59,779 --> 00:18:02,782 which costs a lot of money. 299 00:18:10,657 --> 00:18:15,094 And then probably two years after Emma was diagnosed, 300 00:18:15,094 --> 00:18:18,665 things started getting a lot tougher. 301 00:18:18,665 --> 00:18:22,169 I was trying to manage myself as a type-1 diabetic, 302 00:18:22,169 --> 00:18:24,837 my daughter as a type-1 diabetic. 303 00:18:25,138 --> 00:18:27,140 I lost my job. 304 00:18:27,340 --> 00:18:30,109 And then we lost our home. 305 00:18:35,148 --> 00:18:37,950 When we didn't have anywhere to go and couldn't 306 00:18:37,950 --> 00:18:42,155 get into the homeless shelter, 307 00:18:42,155 --> 00:18:45,658 we would come to the Walmart parking lot 308 00:18:45,658 --> 00:18:47,994 and sleep in the car. 309 00:18:47,994 --> 00:18:50,163 I actually would back into the parking space. 310 00:18:50,163 --> 00:18:53,666 That way, if somebody tried to break in, 311 00:18:53,666 --> 00:18:55,635 I could take off in a hurry and not have to try 312 00:18:55,635 --> 00:18:57,204 to back up. 313 00:18:57,204 --> 00:19:00,039 And how often would you change spots? 314 00:19:00,540 --> 00:19:03,710 Every other day, usually. 315 00:19:03,710 --> 00:19:05,178 I was afraid if I stayed in one spot, 316 00:19:05,178 --> 00:19:08,014 they'd tell me I wasn't allowed to sleep on their property. 317 00:19:08,014 --> 00:19:10,683 And then I didn't know where to go. 318 00:19:10,683 --> 00:19:20,993 *melancholy ambient music 319 00:19:22,895 --> 00:19:24,997 I've been thinking about getting a job 320 00:19:24,997 --> 00:19:28,201 to help pay for insulin. 321 00:19:28,535 --> 00:19:32,339 Or at least help pay, like, bills and stuff, because... 322 00:19:32,339 --> 00:19:34,006 if you're paying for insulin and stuff, 323 00:19:34,006 --> 00:19:37,877 you can't-- it's hard to pay for... 324 00:19:37,877 --> 00:19:41,214 rent and all of that stuff. 325 00:19:42,915 --> 00:19:45,017 I want my kid to be a kid. 326 00:19:45,017 --> 00:19:46,586 I don't want her to worry about it, 327 00:19:46,586 --> 00:19:49,021 and sometimes, I look at her and I'm like, 328 00:19:49,021 --> 00:19:50,757 "You're not 17, you're 11. 329 00:19:50,757 --> 00:19:53,059 Like, let's... 330 00:19:53,059 --> 00:19:55,228 knock it down a little bit." 331 00:20:04,937 --> 00:20:10,743 It's kinda depressing to see diabetes supplies for a month. 332 00:20:11,244 --> 00:20:15,748 Just what's on the table, out-of-pocket, 333 00:20:15,748 --> 00:20:18,084 you're looking at a couple thousand. 334 00:20:18,585 --> 00:20:20,887 It's a lot of money, it's a lot of pokes, 335 00:20:20,887 --> 00:20:23,222 it's a lot of trash, 336 00:20:23,222 --> 00:20:26,959 it's a lot of a lot of different things. 337 00:20:29,296 --> 00:20:31,831 It's very exhausting. 338 00:20:32,332 --> 00:20:36,269 I don't think people realize how tiring diabetes is, 339 00:20:36,269 --> 00:20:39,238 or even how tiring it is to treat somebody that 340 00:20:39,238 --> 00:20:41,240 has diabetes. 341 00:20:42,809 --> 00:20:44,944 We just have to find a way to 342 00:20:44,944 --> 00:20:47,246 continue to pay for everything. 343 00:20:48,448 --> 00:20:50,650 Patients over profits! 344 00:20:50,650 --> 00:20:53,953 Patients over profits! 345 00:20:53,953 --> 00:20:57,957 You can't hide! Your drug prices are homicide! 346 00:20:57,957 --> 00:20:59,826 They say that the high prices for drugs 347 00:20:59,826 --> 00:21:01,328 are just unethical. 348 00:21:01,328 --> 00:21:03,296 And that sparked a weekend protest. 349 00:21:03,296 --> 00:21:05,998 Those rallying are also calling on lawmakers to 350 00:21:05,998 --> 00:21:07,266 pass legislation. 351 00:21:07,266 --> 00:21:08,801 When patients are dying, 352 00:21:08,801 --> 00:21:10,303 your greed is lying! 353 00:21:10,303 --> 00:21:12,805 When an inflated price is set for a life-saving 354 00:21:12,805 --> 00:21:15,942 medication, someone is making a decision about who is worthy 355 00:21:15,942 --> 00:21:17,344 of healthcare. 356 00:21:17,344 --> 00:21:20,146 Kayla Davis had to wait for her doctor's office 357 00:21:20,146 --> 00:21:22,148 to submit the forms necessary 358 00:21:22,148 --> 00:21:24,016 to get it covered by Medicaid. 359 00:21:24,016 --> 00:21:28,154 She rationed the insulin she had left as she waited. 360 00:21:28,154 --> 00:21:31,724 Kayla died because she could not afford her insulin. 361 00:21:31,724 --> 00:21:35,161 We call on the three-legged monopoly 362 00:21:35,161 --> 00:21:39,999 to cease and desist killing our fellow diabetics! 363 00:21:39,999 --> 00:21:42,168 Patients I took care of myself coming in with diabetic 364 00:21:42,168 --> 00:21:45,338 ketoacidosis at death's door... 365 00:21:45,338 --> 00:21:47,907 because they couldn't buy their insulin. 366 00:21:47,907 --> 00:21:51,010 Alec died because he could not afford his insulin, 367 00:21:51,010 --> 00:21:54,013 and his blood is on your hands. 368 00:21:54,013 --> 00:22:00,219 *dramatic music 369 00:22:20,773 --> 00:22:22,875 This is one of my favorites. 370 00:22:34,120 --> 00:22:39,526 Think about what a shame it is that we've had to... 371 00:22:39,526 --> 00:22:42,194 to go to this extent 372 00:22:42,194 --> 00:22:44,531 to bring attention to an issue 373 00:22:44,531 --> 00:22:47,066 that shouldn't even exist. 374 00:22:47,066 --> 00:22:51,103 All these people have died because they can't afford 375 00:22:51,103 --> 00:22:54,240 their medications that the pharmaceutical companies 376 00:22:54,240 --> 00:22:57,410 are producing to keep them alive. 377 00:22:57,744 --> 00:23:02,048 If you calculate it, it costs up to 113,000 dollars a gallon 378 00:23:02,048 --> 00:23:04,283 for insulin. 379 00:23:04,617 --> 00:23:07,386 And it's grown; it's now the fifth most expensive liquid in 380 00:23:07,386 --> 00:23:08,555 the world. 381 00:23:08,555 --> 00:23:09,922 Oh my gosh. 382 00:23:09,922 --> 00:23:11,558 Do you know what the other ones are? 383 00:23:11,558 --> 00:23:14,226 Uh, it's Chanel No. 5... 384 00:23:14,226 --> 00:23:17,564 um, cobra venom... 385 00:23:17,564 --> 00:23:19,799 um... 386 00:23:21,300 --> 00:23:24,804 James, do you remember what the other liquids are? 387 00:23:24,804 --> 00:23:26,405 I don't know. 388 00:23:26,405 --> 00:23:28,074 Yeah. 389 00:23:28,074 --> 00:23:33,580 *sparse piano music 390 00:23:33,580 --> 00:23:34,947 It's crazy. 391 00:23:46,826 --> 00:23:48,928 Oh, your legs are gonna be cold! 392 00:23:59,972 --> 00:24:04,611 What exactly is Alec's Insulin Act now? 393 00:24:04,611 --> 00:24:07,013 'Cause it's been worked on and modified from the 394 00:24:07,013 --> 00:24:08,080 last time around. 395 00:24:08,080 --> 00:24:09,982 Yeah, it's been modified a little bit. 396 00:24:09,982 --> 00:24:14,521 Right now, it would be that if a type 1 in Minnesota finds 397 00:24:14,521 --> 00:24:17,490 themselves in a situation where they cannot afford their 398 00:24:17,490 --> 00:24:21,494 insulin, that they would just go to the pharmacist, 399 00:24:21,494 --> 00:24:24,997 fill out a form that verifies they cannot afford their 400 00:24:24,997 --> 00:24:27,867 prescription, the pharmacist would fill it, 401 00:24:27,867 --> 00:24:31,470 and then submit the bill basically to the insulin 402 00:24:31,470 --> 00:24:34,306 manufacturing companies to pay. 403 00:24:34,306 --> 00:24:36,042 Okay. 404 00:24:36,042 --> 00:24:38,010 And of course, the pharmaceutical companies are 405 00:24:38,010 --> 00:24:41,514 gonna fight us on this because they're not gonna want to cover. 406 00:24:41,514 --> 00:24:42,782 So then after this hearing then, 407 00:24:42,782 --> 00:24:44,884 do they make a decision based off of that and then that's it? 408 00:24:44,884 --> 00:24:46,519 So they will be voting today, 409 00:24:46,519 --> 00:24:50,523 and if it passes, then it would go on to the Senate hearings, 410 00:24:50,523 --> 00:24:54,894 and then once it's approved by each committee and House and 411 00:24:54,894 --> 00:24:57,029 Senate, then it would go on to the Governor for his 412 00:24:57,029 --> 00:24:59,031 final signature. 413 00:25:01,367 --> 00:25:02,168 Hi, how are you? 414 00:25:02,168 --> 00:25:03,202 Good, how are you? 415 00:25:03,202 --> 00:25:04,303 Thanks so much for being here. 416 00:25:04,303 --> 00:25:05,371 Yes, thank you for doing this! 417 00:25:05,371 --> 00:25:07,306 - I so appreciate it! - Yeah! 418 00:25:07,306 --> 00:25:08,440 Cristine, this is my daughter Brittany. 419 00:25:08,440 --> 00:25:09,441 - Hi, my name's Brittany. - Nice to meet you! 420 00:25:09,441 --> 00:25:10,142 And you guys got the word out so, so amazingly. 421 00:25:10,142 --> 00:25:12,144 There are so many people here! 422 00:25:12,144 --> 00:25:13,379 - I've read all about you... - h... 423 00:25:13,379 --> 00:25:15,047 And I've heard all about you from Quinn. 424 00:25:15,047 --> 00:25:17,349 - Oh, yeah! - I have a son with type 1 also. 425 00:25:17,349 --> 00:25:20,419 - Okay. - I just... 426 00:25:20,753 --> 00:25:21,487 Thank you for everything you're doing because-- 427 00:25:21,487 --> 00:25:24,423 Yes! Well, thank you guys too! 428 00:25:24,423 --> 00:25:26,058 Great, Senator Little's office is here! 429 00:25:26,058 --> 00:25:29,195 - Welcome! - Which is... us. 430 00:25:31,530 --> 00:25:34,066 I'm happy to be here with you today. 431 00:25:34,066 --> 00:25:37,403 As you may know, insulin prices are a little bit high. 432 00:25:37,403 --> 00:25:39,071 - So... 433 00:25:39,071 --> 00:25:39,972 - What?! 434 00:25:39,972 --> 00:25:42,441 Yeah, I know, it's shocking. 435 00:25:42,441 --> 00:25:45,444 What really matters today is we lower the price, 436 00:25:45,444 --> 00:25:49,248 but efforts are all trying to be thwarted by these companies, 437 00:25:49,248 --> 00:25:54,220 and I just want to remind them that they are the ones causing 438 00:25:54,220 --> 00:25:55,254 the problem! 439 00:25:55,254 --> 00:25:59,225 Pharma is in these hallways seven days a week. 440 00:25:59,225 --> 00:26:00,126 Yeah. 441 00:26:00,126 --> 00:26:02,962 Influencing with their money and their-- 442 00:26:02,962 --> 00:26:04,597 - Yeah. - You know, lunch dates. 443 00:26:04,597 --> 00:26:08,234 So you should know that we are no longer meeting with any of 444 00:26:08,234 --> 00:26:09,401 these lobbyists. 445 00:26:09,401 --> 00:26:11,103 - At all. 446 00:26:16,275 --> 00:26:19,278 Senator, who's the chair of the committee? 447 00:26:19,278 --> 00:26:21,080 Uh, Michelle Benson is the main chair. 448 00:26:21,080 --> 00:26:22,248 Yeah? 449 00:26:22,248 --> 00:26:23,449 Do you have other suggestions as to how we can 450 00:26:23,449 --> 00:26:25,985 influence Senator Benson? 451 00:26:25,985 --> 00:26:28,621 Will she hear from her non-constituents if we show up 452 00:26:28,621 --> 00:26:29,756 at three o'clock? 453 00:26:29,756 --> 00:26:32,124 If, uh... if you show up? 454 00:26:32,124 --> 00:26:33,059 Yeah, if I show up. 455 00:26:33,059 --> 00:26:34,293 I'll bet you she listens to you. 456 00:26:34,293 --> 00:26:35,261 - Okay. - Yeah. 457 00:26:37,296 --> 00:26:40,299 - You too, but her... 458 00:26:40,299 --> 00:26:45,004 - She scares me more. 459 00:26:45,004 --> 00:26:49,776 *sensitive ambient music 460 00:26:49,776 --> 00:26:51,343 Hey hey, ho ho! 461 00:26:51,343 --> 00:26:53,112 High drug prices got to go! 462 00:26:53,112 --> 00:26:55,147 Hey hey, ho ho! 463 00:26:55,147 --> 00:26:57,016 High drug prices got to go! 464 00:26:57,016 --> 00:26:58,651 Hey hey, ho ho! 465 00:26:58,651 --> 00:27:00,653 High drug prices got to go! 466 00:27:02,521 --> 00:27:05,324 I'm a family doctor, and this morning at eight o'clock, 467 00:27:05,324 --> 00:27:08,060 I was seeing a patient struggling to pay for insulin. 468 00:27:08,060 --> 00:27:11,330 People with diabetes cannot be asked to ration things so that 469 00:27:11,330 --> 00:27:13,032 they can have their insulin! 470 00:27:13,032 --> 00:27:16,202 There are huge barriers in our way to being healthy, 471 00:27:16,202 --> 00:27:18,137 and those barriers have everything to do with the cost 472 00:27:18,137 --> 00:27:19,505 of our drugs! 473 00:27:19,505 --> 00:27:21,808 Actually, I've got the secret to insulin pricing; 474 00:27:21,808 --> 00:27:24,176 - it's in the black box. 475 00:27:24,176 --> 00:27:25,812 We're trying to find a way to look inside the box, 476 00:27:25,812 --> 00:27:28,180 and hey, I wonder what's in the box! 477 00:27:28,180 --> 00:27:30,482 Oh! "Dear Congressman, thank you for supporting us. 478 00:27:30,482 --> 00:27:31,684 Love, Pharma!" 479 00:27:31,684 --> 00:27:34,220 - Oh, that's in the black box! 480 00:27:34,220 --> 00:27:38,324 They spend 10s and 10s of millions of dollars to make sure 481 00:27:38,324 --> 00:27:40,192 the box stays closed. 482 00:27:40,192 --> 00:27:42,161 It's time to open up the box. 483 00:27:44,563 --> 00:27:47,199 The prices have been so ridiculously high, 484 00:27:47,199 --> 00:27:49,368 and they've been increasing 'em year over year, 485 00:27:49,368 --> 00:27:52,071 and they don't seem to care. 486 00:27:52,071 --> 00:27:56,408 In fact, they find ways to blame everybody else but themselves! 487 00:27:56,408 --> 00:27:59,345 And we absolutely need to pass the Alec Smith Emergency 488 00:27:59,345 --> 00:28:00,512 Insulin Act. 489 00:28:02,715 --> 00:28:04,851 My name is Nicole. 490 00:28:04,851 --> 00:28:08,220 And I am here today because in 2017, 491 00:28:08,220 --> 00:28:11,557 my son Alec Smith died from rationing his insulin. 492 00:28:12,058 --> 00:28:14,560 Alec did not choose to ration insulin, 493 00:28:14,560 --> 00:28:17,396 he was forced to do so because he could not afford the price 494 00:28:17,396 --> 00:28:20,066 that was placed upon his life. 495 00:28:21,567 --> 00:28:24,737 To me, his life is priceless. 496 00:28:25,204 --> 00:28:28,107 But to Eli Lilly... 497 00:28:28,107 --> 00:28:30,242 Sanofi... 498 00:28:30,242 --> 00:28:32,578 Novo... 499 00:28:32,578 --> 00:28:36,248 his life was worth 1300 dollars a month. 500 00:28:40,319 --> 00:28:42,588 There are only two scenarios that I can think of that could 501 00:28:42,588 --> 00:28:44,723 have saved my son's life, 502 00:28:44,723 --> 00:28:47,293 the first being affordable insulin. 503 00:28:47,293 --> 00:28:51,764 The other option would be a safety net-- 504 00:28:51,764 --> 00:28:55,902 a safety net like the Alec Smith Emergency Insulin Act. 505 00:28:55,902 --> 00:28:59,638 If this was in place in 2017, I know that Alec-- 506 00:28:59,638 --> 00:29:02,408 my baby, no matter how old he was-- 507 00:29:02,408 --> 00:29:04,610 would still be here. 508 00:29:04,610 --> 00:29:07,146 I believe that this bill will save lives. 509 00:29:07,146 --> 00:29:10,449 I ask you to please vote yes. 510 00:29:10,783 --> 00:29:13,585 Thank you from my entire family. 511 00:29:13,585 --> 00:29:14,921 Thank you. 512 00:29:14,921 --> 00:29:17,656 Moving on to public testimony. 513 00:29:18,157 --> 00:29:22,795 Yeah, so I-- we-- I've been a part of a couple hearings now 514 00:29:22,795 --> 00:29:24,797 where we've heard pharmacy-related bills, 515 00:29:24,797 --> 00:29:29,435 and each time, there has been representation from the 516 00:29:29,435 --> 00:29:30,602 pharmaceutical lobby. 517 00:29:32,471 --> 00:29:34,673 Good afternoon, my name is Christina Moorehead, 518 00:29:34,673 --> 00:29:36,809 and I'm a Senior Director of State Policy for the 519 00:29:36,809 --> 00:29:39,278 Pharmaceutical Research and Manufacturers of America, 520 00:29:39,278 --> 00:29:40,512 or PHARMA. 521 00:29:40,512 --> 00:29:44,183 Each time, it feels sort of removed-- or detached, rather. 522 00:29:44,183 --> 00:29:46,185 PHARMA represents the country's leading innovative 523 00:29:46,185 --> 00:29:48,620 biopharmaceutical research companies that have invested 524 00:29:48,620 --> 00:29:50,656 more than 600 billion dollars... 525 00:29:50,656 --> 00:29:52,658 The argument from Big Pharma, uh, 526 00:29:52,658 --> 00:29:54,793 is to lead with platitudes and say, 527 00:29:54,793 --> 00:29:56,662 "This is just not as simple," 528 00:29:56,662 --> 00:29:58,330 and to point the finger at somebody else. 529 00:29:58,330 --> 00:30:01,333 Health insurers-- and not biopharmaceutical manufacturers 530 00:30:01,333 --> 00:30:02,434 determine the price a patient pays... 531 00:30:02,434 --> 00:30:05,972 There's almost a coordinated theater of these actors, 532 00:30:05,972 --> 00:30:09,508 where they will all point to the other and say, 533 00:30:09,508 --> 00:30:11,343 "We're not responsible, we're not accountable." 534 00:30:11,343 --> 00:30:13,379 Pharmacy benefit managers, insurers, 535 00:30:13,379 --> 00:30:15,681 and hospitals are getting billions of dollars every year 536 00:30:15,681 --> 00:30:17,984 from negotiated rebates to pad their bottom lines to 537 00:30:17,984 --> 00:30:19,518 lower premiums... 538 00:30:19,518 --> 00:30:21,553 And that's what needs to change. 539 00:30:23,022 --> 00:30:24,690 While this bill is well intended, 540 00:30:24,690 --> 00:30:27,226 this legislation does not fully address the issue that diabetic 541 00:30:27,226 --> 00:30:30,229 patients are facing in affording healthcare. 542 00:30:30,229 --> 00:30:32,664 So I-- I'm trying to get my head around all of this. 543 00:30:32,664 --> 00:30:36,002 What is the cost of a vial... 544 00:30:36,002 --> 00:30:38,670 to manufacture for insulin? 545 00:30:38,670 --> 00:30:39,671 Ms. Moorehead. 546 00:30:39,671 --> 00:30:41,707 Uh, Chairwoman and members of the committee, 547 00:30:41,707 --> 00:30:45,244 um, I represent the trade association and not a specific 548 00:30:45,244 --> 00:30:47,513 drug company, so those are questions I don't have the 549 00:30:47,513 --> 00:30:49,248 information for. 550 00:30:49,248 --> 00:30:50,549 So I guess I'm just asking, 551 00:30:50,549 --> 00:30:53,585 um, these questions-- and I-- I apologize, 552 00:30:53,585 --> 00:30:56,555 I thought you could answer some of them-- but I don't know if 553 00:30:56,555 --> 00:30:59,258 you could direct me to who can answer that question, 554 00:30:59,258 --> 00:31:00,927 but I guess I'd like to know, at the end of the day, 555 00:31:00,927 --> 00:31:03,029 when there's only three manufacturers and the market is 556 00:31:03,029 --> 00:31:06,398 cornered, and people's lives are being affected, 557 00:31:06,398 --> 00:31:09,735 how do we ever get to the bottom of it if it's nobody's fault? 558 00:31:09,735 --> 00:31:11,770 It just seems like we're going nowhere 'cause nobody wants to 559 00:31:11,770 --> 00:31:14,606 take accountability in anything. 560 00:31:14,974 --> 00:31:15,874 Thank you, Representative Lislegard. 561 00:31:15,874 --> 00:31:18,410 Thank you, Ms. Morehead, for coming back. 562 00:31:18,410 --> 00:31:21,280 Further discussion, Committee? 563 00:31:21,280 --> 00:31:24,050 Seeing none, Representative Howard, we'll welcome you back 564 00:31:24,050 --> 00:31:26,418 for a last word. 565 00:31:26,418 --> 00:31:28,787 Minnesotans are dying. 566 00:31:28,787 --> 00:31:30,889 We weren't able to save the life of Alec, 567 00:31:30,889 --> 00:31:33,059 but with your support of this bill, 568 00:31:33,059 --> 00:31:35,727 Alec can save the lives of Minnesotans, 569 00:31:35,727 --> 00:31:37,463 and I'd ask for your support. 570 00:31:37,463 --> 00:31:39,065 All those in favor, say "Aye." 571 00:31:39,065 --> 00:31:40,066 Aye. 572 00:31:40,066 --> 00:31:41,767 Any opposed? 573 00:31:41,767 --> 00:31:43,435 - The motion prevails. 574 00:31:43,435 --> 00:31:44,770 You are on your way. 575 00:31:44,770 --> 00:31:51,477 *uplifting music 576 00:31:51,477 --> 00:31:52,811 It was unanimous! 577 00:31:53,779 --> 00:31:55,081 I'm happy! 578 00:31:55,081 --> 00:31:56,782 - I'm very happy! - Yeah! 579 00:31:58,517 --> 00:31:59,986 - Wow. 580 00:31:59,986 --> 00:32:04,623 Today was the big first hurdle to deal with the 581 00:32:04,623 --> 00:32:07,493 affordability and inaccessibility of insulin. 582 00:32:07,493 --> 00:32:10,829 We had the opportunity to hear Alec's Bill and a number of 583 00:32:10,829 --> 00:32:13,099 other bills that deal with this issue, 584 00:32:13,099 --> 00:32:15,968 and pass those bills. 585 00:32:15,968 --> 00:32:18,604 They will now move to another committee and move through the 586 00:32:18,604 --> 00:32:21,340 legislative process. 587 00:32:21,340 --> 00:32:24,476 We have about two months to move the bill forward and get it 588 00:32:24,476 --> 00:32:26,512 passed into law. 589 00:32:26,512 --> 00:32:27,613 Do you feel that the bill will pass by the end 590 00:32:27,613 --> 00:32:29,982 of the session? 591 00:32:29,982 --> 00:32:32,784 Uh, I'm guardedly optimistic that we can 592 00:32:32,784 --> 00:32:35,387 pass this bill this year. 593 00:32:35,387 --> 00:32:39,858 But I know that when you're fighting big interests like Big 594 00:32:39,858 --> 00:32:42,961 Pharma, there are no guarantees. 595 00:32:42,961 --> 00:32:50,002 *tense music 596 00:32:53,839 --> 00:32:56,008 Get one of these guys... 597 00:32:56,008 --> 00:32:57,743 I'm just gonna bring all of that. 598 00:32:57,743 --> 00:33:00,646 I was diagnosed with type 1 diabetes about two and a 599 00:33:00,646 --> 00:33:01,647 half months ago. 600 00:33:01,647 --> 00:33:03,149 Insulin. 601 00:33:03,149 --> 00:33:05,984 Literally at the start of COVID. 602 00:33:05,984 --> 00:33:10,022 *mellow ethereal music 603 00:33:10,022 --> 00:33:12,024 I get to the hospital. 604 00:33:12,024 --> 00:33:14,160 The nurse came and took my blood. 605 00:33:14,160 --> 00:33:18,030 It was really dark and thick, like syrup. 606 00:33:18,864 --> 00:33:20,866 The doctor comes in. 607 00:33:21,900 --> 00:33:23,569 And he's like, "Well... 608 00:33:23,569 --> 00:33:25,904 you have type 1 diabetes." 609 00:33:28,040 --> 00:33:30,008 My God, I, like, blacked out. 610 00:33:30,008 --> 00:33:33,045 All right, pull the insulin first. 611 00:33:33,045 --> 00:33:35,581 Inject into the cartridge. 612 00:33:35,581 --> 00:33:36,848 Run the insulin through. 613 00:33:36,848 --> 00:33:38,884 - Fuck. 614 00:33:40,219 --> 00:33:42,554 Then the insurance woman comes in [chuckles] 615 00:33:42,554 --> 00:33:44,690 and basically, she's like, 616 00:33:44,690 --> 00:33:45,857 "You have 1 or 2?" 617 00:33:45,857 --> 00:33:47,059 And I was like, "1?" 618 00:33:47,059 --> 00:33:49,728 She goes, "Ugh, you got the bad one." 619 00:33:49,728 --> 00:33:52,064 And I'm like, "Okay." 620 00:33:52,064 --> 00:33:55,067 When I found all this out, I literally had no insurance. 621 00:33:55,067 --> 00:34:00,072 I had a moment where I freaked out, like... 622 00:34:00,606 --> 00:34:03,075 I don't know, um... 623 00:34:03,075 --> 00:34:07,579 "What if I can't afford any of-- any of it?" 624 00:34:07,579 --> 00:34:12,584 *sparse curious music 625 00:34:12,584 --> 00:34:16,054 In the US, you really need insurance to get healthcare 626 00:34:16,054 --> 00:34:18,490 access at an affordable cost. 627 00:34:18,490 --> 00:34:20,592 People around the world may not be able to understand this 628 00:34:20,592 --> 00:34:21,793 that easily. 629 00:34:21,793 --> 00:34:24,596 In countries like in Europe, where they have some kind of 630 00:34:24,596 --> 00:34:27,766 either centralized or universal healthcare or single-payer, 631 00:34:27,766 --> 00:34:29,601 you could be covered completely. 632 00:34:29,601 --> 00:34:32,104 And so, for example, when you get your insulin, 633 00:34:32,104 --> 00:34:36,475 you just go and either it's free or it's a low copay. 634 00:34:36,808 --> 00:34:41,113 However, in the US, most people get their health 635 00:34:41,113 --> 00:34:44,082 insurance through their employers. 636 00:34:44,082 --> 00:34:47,085 But healthcare costs are so expensive, 637 00:34:47,085 --> 00:34:49,788 even if you're fully insured, 638 00:34:49,788 --> 00:34:52,491 you have to worry about the premiums that you're going to 639 00:34:52,491 --> 00:34:54,092 pay to get that insurance. 640 00:34:54,092 --> 00:34:56,495 You have to worry about your copay. 641 00:34:56,495 --> 00:34:58,697 You have to worry about the deductible, 642 00:34:58,697 --> 00:35:00,799 and spend several thousand dollars before your insurance 643 00:35:00,799 --> 00:35:02,668 kicks in. 644 00:35:02,668 --> 00:35:06,538 So you could be in a position where your job doesn't have good 645 00:35:06,538 --> 00:35:10,642 insurance, and you could lose a lifetime savings due 646 00:35:10,642 --> 00:35:12,844 to one illness. 647 00:35:14,846 --> 00:35:16,648 Yeah, it makes you depressed. 648 00:35:19,351 --> 00:35:20,986 This video will be helpful for you if you're 649 00:35:20,986 --> 00:35:22,821 already on an insulin pump. 650 00:35:22,821 --> 00:35:25,824 I'm gonna go through each step in a lot of details. 651 00:35:25,824 --> 00:35:28,194 So first things first is I'm gonna take out my old site and 652 00:35:28,194 --> 00:35:30,996 disconnect just so that I'm completely disconnected for 653 00:35:30,996 --> 00:35:32,864 this process. I don't want to-- 654 00:35:34,166 --> 00:35:36,302 Always... 655 00:35:36,302 --> 00:35:39,671 pull the insulin first? 656 00:35:43,041 --> 00:35:45,177 So it tells me to remove the cartridge and 657 00:35:45,177 --> 00:35:48,013 install a new one, so I'm gonna remove the old one. 658 00:35:48,013 --> 00:35:50,015 So I just use this little tag here. 659 00:35:50,015 --> 00:35:52,884 So you wanna hold it, like, kind of on one side because the 660 00:35:52,884 --> 00:35:54,720 cartridge is coming out the other side. 661 00:35:54,720 --> 00:35:55,821 Oh my God. 662 00:35:55,821 --> 00:35:57,155 Oh my God. 663 00:35:57,155 --> 00:35:58,857 What? 664 00:35:58,857 --> 00:36:00,158 - What?! - I fucked up! 665 00:36:00,158 --> 00:36:02,027 Just gimme a second to process! 666 00:36:02,027 --> 00:36:03,729 - Just hold on! - I don't know, like-- 667 00:36:03,729 --> 00:36:05,697 I know you don't know, I just need a minute. 668 00:36:05,697 --> 00:36:07,866 - Just gimme a minute. - Okay, okay. 669 00:36:14,105 --> 00:36:16,575 I'll pull it like that. 670 00:36:16,775 --> 00:36:20,246 Here, and I'm just gonna give it a good... 671 00:36:20,546 --> 00:36:22,214 - See? - That made more bubbles. 672 00:36:22,214 --> 00:36:24,082 I know, but it got the bubble down from there. 673 00:36:24,082 --> 00:36:26,585 Now I'll push those bubbles out. 674 00:36:27,753 --> 00:36:31,923 Last time you did it, we wasted a lot of insulin. 675 00:36:31,923 --> 00:36:33,091 And this time, it was just as-- 676 00:36:33,091 --> 00:36:34,926 - No, that's als-- - You're not looking at what-- 677 00:36:34,926 --> 00:36:35,861 You gotta let me finish. 678 00:36:35,861 --> 00:36:37,763 The costs are gonna be long term. 679 00:36:37,763 --> 00:36:38,897 That's where I-- 680 00:36:38,897 --> 00:36:40,366 For me, I'm not gonna be concerned about cost, 681 00:36:40,366 --> 00:36:42,268 I'm concerned about my life. 682 00:36:42,268 --> 00:36:44,936 Learning all this stuff and figuring all this shit out, 683 00:36:44,936 --> 00:36:46,905 I don't wanna bring money into it! 684 00:36:46,905 --> 00:36:48,173 I don't wanna think about it! 685 00:36:48,173 --> 00:36:53,111 I'm choosing that as a strategic way to keep my mental stability, 686 00:36:53,111 --> 00:36:55,046 and money does not help me with that. 687 00:36:55,046 --> 00:36:56,382 That will come. 688 00:36:56,382 --> 00:36:58,617 Do you know what I mean? 689 00:36:58,617 --> 00:37:00,786 Yes, I understand why. 690 00:37:00,786 --> 00:37:03,255 But if you keep your head in the sand on the financials, 691 00:37:03,255 --> 00:37:04,923 you're gonna end up in that place. 692 00:37:04,923 --> 00:37:07,393 If this is your biggest worry, do it. 693 00:37:07,393 --> 00:37:09,261 It's not my biggest worry. 694 00:37:09,261 --> 00:37:11,897 My biggest worry is staying alive. 695 00:37:11,897 --> 00:37:21,072 *soft tense music 696 00:37:21,072 --> 00:37:24,976 Pens, vials... 697 00:37:25,644 --> 00:37:28,780 I probably have about 150,000 dollars' worth of 698 00:37:28,780 --> 00:37:32,784 insulin, and probably... 699 00:37:33,785 --> 00:37:37,956 easily 100,000 dollars' worth of supplies. 700 00:37:39,157 --> 00:37:41,660 People hear about me, get in touch, 701 00:37:41,660 --> 00:37:45,697 and they send me insulin and diabetic supplies. 702 00:37:45,697 --> 00:37:47,299 And most of this comes from people that 703 00:37:47,299 --> 00:37:49,301 - have passed away? - Yeah. 704 00:37:51,303 --> 00:37:54,673 And people wanna help others. 705 00:37:54,673 --> 00:37:57,943 So I take it, and then get it into the hands of those 706 00:37:57,943 --> 00:38:00,178 who need it. 707 00:38:00,679 --> 00:38:04,015 Every day, there's someone posting on social media that is 708 00:38:04,015 --> 00:38:07,018 asking for some assistance. 709 00:38:07,519 --> 00:38:12,157 Insulin is not an option, and if you are put in a position where 710 00:38:12,157 --> 00:38:16,328 you're gonna die if you don't get access to insulin, 711 00:38:16,328 --> 00:38:18,864 you gotta do whatever you gotta do. 712 00:38:21,032 --> 00:38:22,868 I have extra stock on hand, 713 00:38:22,868 --> 00:38:28,006 so I do insulin deliveries one to four times a month. 714 00:38:28,006 --> 00:38:29,708 - I've got five pens. - Great, five pens. 715 00:38:29,708 --> 00:38:31,009 - There you go! - I can really use 'em! 716 00:38:31,009 --> 00:38:32,310 We shouldn't have to do this, 717 00:38:32,310 --> 00:38:35,013 but this happens all the time. 718 00:38:36,515 --> 00:38:38,984 All right... 719 00:39:08,046 --> 00:39:10,882 You know, as long as people are still having 720 00:39:10,882 --> 00:39:13,351 difficulty affording their insulin, 721 00:39:13,351 --> 00:39:16,221 I'll continue to fight. 722 00:39:24,229 --> 00:39:27,399 In my practice, my counseling for patients with diabetes now 723 00:39:27,399 --> 00:39:29,200 includes a lot about how expensive this condition is 724 00:39:29,200 --> 00:39:30,368 gonna be for them. 725 00:39:30,368 --> 00:39:32,904 If I have patients who are traveling outside of the US, 726 00:39:32,904 --> 00:39:35,441 I do remind them about opportunities to buy their 727 00:39:35,441 --> 00:39:38,944 insulin much more cheaply outside of our country. 728 00:39:38,944 --> 00:39:41,112 It's really disappointing, to be honest, 729 00:39:41,112 --> 00:39:44,950 to live in a country with so much resources, 730 00:39:44,950 --> 00:39:48,554 and still, people are rationing medicines and deciding that they 731 00:39:48,554 --> 00:39:51,089 have to leave. 732 00:39:51,089 --> 00:39:55,093 To be a medical refugee from the United States going elsewhere, 733 00:39:55,093 --> 00:39:57,295 we, as Americans, need to look at ourselves in the mirror and 734 00:39:57,295 --> 00:39:58,930 realize that that's happening, 735 00:39:58,930 --> 00:40:01,433 and that is what the American Dream has become. 736 00:40:01,433 --> 00:40:06,972 *mellow ambient music 737 00:40:06,972 --> 00:40:11,076 For a while, I've been planning to go to Canada 738 00:40:11,076 --> 00:40:13,111 to purchase insulin, 739 00:40:13,111 --> 00:40:16,314 but I didn't have money to afford to get there. 740 00:40:18,149 --> 00:40:23,121 But we've been traveling to Seattle to do diabetes research. 741 00:40:25,323 --> 00:40:30,128 The research department does pay to fly us here. 742 00:40:30,128 --> 00:40:35,266 And it puts us a lot closer to the Canadian border, 743 00:40:35,266 --> 00:40:37,469 which is great. 744 00:40:37,803 --> 00:40:40,338 But it's still not enough. 745 00:40:40,338 --> 00:40:41,840 Your checking account available 746 00:40:41,840 --> 00:40:43,108 balance is... 747 00:40:43,108 --> 00:40:46,311 3,505 dollars. 748 00:40:46,311 --> 00:40:49,314 Your balance includes two recent direct deposits. 749 00:40:49,314 --> 00:40:51,950 But I got my tax return. 750 00:40:51,950 --> 00:40:53,885 We're all set. 751 00:40:53,885 --> 00:40:55,854 And now, we're going out of the country. 752 00:40:55,854 --> 00:40:59,457 Vancouver, British Columbia, 64 miles. 753 00:41:05,997 --> 00:41:07,999 341. 754 00:41:07,999 --> 00:41:09,300 You need to do a shot. 755 00:41:09,300 --> 00:41:10,636 Mm, can't. 756 00:41:10,636 --> 00:41:11,637 You can. 757 00:41:11,637 --> 00:41:13,872 No, I can't! 758 00:41:14,740 --> 00:41:17,375 I'll stab myself like five times. 759 00:41:17,375 --> 00:41:20,879 Just go ahead and do it 'cause there's no bumps for a while. 760 00:41:29,020 --> 00:41:31,056 I can't do it. 761 00:41:31,590 --> 00:41:35,493 There, I'm slowed way down, so do your shot. 762 00:41:37,896 --> 00:41:40,198 I'm seriously gonna cry. 763 00:41:45,571 --> 00:41:47,205 Now! 764 00:41:53,244 --> 00:41:55,413 - - Thank you. 765 00:42:03,388 --> 00:42:05,090 What do you want for a snack? 766 00:42:05,090 --> 00:42:06,892 Food. 767 00:42:08,960 --> 00:42:11,229 There's a lot of people that are still under the 768 00:42:11,229 --> 00:42:14,132 misconception that... 769 00:42:14,132 --> 00:42:18,369 we can just lose weight or eat healthy and we'll be fine, 770 00:42:18,369 --> 00:42:21,439 when that's not the case. 771 00:42:21,973 --> 00:42:26,411 Being type 1 diabetic, our body doesn't produce insulin at all, 772 00:42:26,411 --> 00:42:30,716 no matter what we eat or what our lifestyle is. 773 00:42:30,716 --> 00:42:40,558 *mellow ambient music 774 00:42:40,558 --> 00:42:42,227 There, Emma, look! 775 00:42:46,732 --> 00:42:48,566 - Ooh hoo! - That is super pretty. 776 00:42:48,566 --> 00:42:50,301 Best... 777 00:42:50,301 --> 00:42:52,103 picture I can ever take in the-- 778 00:42:52,103 --> 00:42:54,105 - Did you get it? - Ohh! 779 00:42:54,105 --> 00:42:56,107 Come on, cars, you can move your butt. 780 00:42:56,107 --> 00:42:58,109 [laughs] Okay. 781 00:42:58,109 --> 00:43:00,946 Oh, that's it. 782 00:43:14,159 --> 00:43:16,161 You're doing it. 783 00:43:22,467 --> 00:43:24,302 Not well. 784 00:43:35,213 --> 00:43:39,184 Math is easy for me 'cause I do a lot of math with my blood 785 00:43:39,184 --> 00:43:41,319 sugar stuff. 786 00:43:43,488 --> 00:43:45,791 So much math today. 787 00:43:45,791 --> 00:43:48,326 Before coffee. 788 00:43:50,528 --> 00:43:52,664 For insulin and medical supplies, 789 00:43:52,664 --> 00:43:56,467 I'll be spending 514 dollars and 84 cents, 790 00:43:56,467 --> 00:44:01,339 whereas at home in the US, um, 791 00:44:01,339 --> 00:44:06,044 it's 2,750 dollars and 94 cents. 792 00:44:06,044 --> 00:44:09,347 And if you take the total of how much I would spend for all of 793 00:44:09,347 --> 00:44:13,051 that insulin in one month, subtract all of our expenses, 794 00:44:13,051 --> 00:44:18,356 I'm still saving 1,555 dollars and 10 cents. 795 00:44:19,057 --> 00:44:22,360 It's crazy to think of what the difference is. 796 00:44:22,360 --> 00:44:24,362 I mean, I can... 797 00:44:24,362 --> 00:44:27,498 come to Canada twice and still save like 798 00:44:27,498 --> 00:44:30,035 300 dollars. 799 00:44:32,738 --> 00:44:36,541 *mellow ambient music 800 00:44:36,541 --> 00:44:39,577 How long does it take from here to get to Canada? 801 00:44:39,577 --> 00:44:42,680 Canada's the other side of this. 802 00:44:42,680 --> 00:44:44,682 Oh, we're next! 803 00:44:44,682 --> 00:44:48,386 - Oh, I'm scared! 804 00:44:49,888 --> 00:44:52,190 Ooh, it's a dude. He looks hot. 805 00:44:52,190 --> 00:44:53,859 Emma Mae! 806 00:44:53,859 --> 00:44:56,227 - Mm... - Ooh, our turn! 807 00:44:56,227 --> 00:44:57,695 - Hoo! 808 00:44:57,695 --> 00:44:59,397 Oh, that's bumpy. 809 00:45:00,866 --> 00:45:01,699 No. 810 00:45:02,901 --> 00:45:04,535 Nope. 811 00:45:04,535 --> 00:45:06,738 Diabetes supplies. 812 00:45:09,274 --> 00:45:10,075 No. 813 00:45:10,742 --> 00:45:13,578 That stuff's too expensive to give away. 814 00:45:13,578 --> 00:45:15,280 Oh, we're in Canada! 815 00:45:15,280 --> 00:45:16,414 I know, it's so weird! 816 00:45:18,616 --> 00:45:21,252 - Oh my gosh. - Ohh! 817 00:45:22,620 --> 00:45:25,556 Can you pay in English money here? 818 00:45:25,556 --> 00:45:27,592 US dollars here? 819 00:45:27,592 --> 00:45:30,295 I think in some places, you can. 820 00:45:30,295 --> 00:45:32,563 I'm just glad that we don't have to drive on the opposite side of 821 00:45:32,563 --> 00:45:34,265 the road. 822 00:45:34,265 --> 00:45:37,268 Your destination is on the right. 823 00:45:38,770 --> 00:45:39,905 That's it. 824 00:45:39,905 --> 00:45:41,306 Thank you. 825 00:45:44,609 --> 00:45:47,278 - Hi. - Hi. 826 00:45:47,278 --> 00:45:49,147 Uh, my name's Sandra. 827 00:45:49,147 --> 00:45:52,283 We made some arrangements to pick up some insulin? 828 00:45:52,283 --> 00:45:53,318 Yes. 829 00:45:53,318 --> 00:45:54,619 Who's the medication for? 830 00:45:54,619 --> 00:45:55,921 - Both of us. - Okay. 831 00:45:55,921 --> 00:46:00,291 Um, so, um, if you could actually put down, 832 00:46:00,291 --> 00:46:02,928 uh, which medications... 833 00:46:02,928 --> 00:46:05,330 - Is for which person? - Yeah. 834 00:46:05,330 --> 00:46:06,464 How was your drive? 835 00:46:06,464 --> 00:46:07,598 Hers is... 836 00:46:07,598 --> 00:46:09,767 - Fun. - Yeah, fun? 837 00:46:09,767 --> 00:46:10,568 Perfect. 838 00:46:10,568 --> 00:46:11,937 I'll go get this started for ya. 839 00:46:11,937 --> 00:46:12,737 Okay, thank you. 840 00:46:12,737 --> 00:46:13,939 It'll just be a couple of minutes. 841 00:46:13,939 --> 00:46:16,141 Awesome, thank you. 842 00:46:19,444 --> 00:46:20,946 Do you know what the insulin's costing you in 843 00:46:20,946 --> 00:46:22,047 the States? 844 00:46:22,047 --> 00:46:24,515 It's quite a bit more; it's a little over 845 00:46:24,515 --> 00:46:25,450 - 2,000 dollars-- - Wow. 846 00:46:25,450 --> 00:46:27,485 For what we're picking up today. 847 00:46:27,485 --> 00:46:29,821 - That's a lot. - It's quite a bit. 848 00:46:29,821 --> 00:46:31,622 I don't understand how people can afford it, 849 00:46:31,622 --> 00:46:33,658 - quite frankly. - Right! 850 00:46:33,658 --> 00:46:35,326 Yeah, we've had people fly down, 851 00:46:35,326 --> 00:46:39,197 take a trip, pick it up-- we're right close to the airport-- 852 00:46:39,197 --> 00:46:39,965 - Right. - And then just fly right back. 853 00:46:39,965 --> 00:46:40,832 Oh, yeah. 854 00:46:40,832 --> 00:46:42,333 And then they still save a fortune. 855 00:46:42,333 --> 00:46:43,969 Yup, it's crazy. 856 00:46:43,969 --> 00:46:46,972 "Insulin rationing's" become a household term-- 857 00:46:46,972 --> 00:46:48,106 Yup. 858 00:46:48,106 --> 00:46:49,807 - Which is very scary. - Been there, done that. 859 00:46:49,807 --> 00:46:50,976 - That's scary. - Yup. 860 00:46:50,976 --> 00:46:52,143 That's very scary. 861 00:46:52,143 --> 00:46:55,813 So we're giving you, uh, a box of the Tresiba. 862 00:46:55,813 --> 00:46:56,681 All right. 863 00:46:56,681 --> 00:46:58,716 And you're aware of storage? 864 00:46:58,716 --> 00:47:00,385 - Yup. - In the fridge. 865 00:47:00,385 --> 00:47:02,520 And then we also have the vial. 866 00:47:02,520 --> 00:47:04,655 Do you have the actual reusable pen? 867 00:47:04,655 --> 00:47:05,857 Yes, yeah. 868 00:47:05,857 --> 00:47:07,893 Okay, do you need an extra in case? 869 00:47:07,893 --> 00:47:09,360 - Uh... - 'Cause it's no charge. 870 00:47:09,360 --> 00:47:10,395 How-- there's no charge? 871 00:47:10,395 --> 00:47:12,230 Then yeah, we'll take one of those. 872 00:47:12,230 --> 00:47:14,232 So we'll do that. Any preference to color? 873 00:47:14,232 --> 00:47:16,401 There's blue and silver, I think. 874 00:47:16,401 --> 00:47:17,835 Do you want blue or silver? 875 00:47:17,835 --> 00:47:18,870 Blue. 876 00:47:18,870 --> 00:47:21,206 - Blue? - Blue, please. 877 00:47:23,241 --> 00:47:24,542 Awesome, thank you. 878 00:47:24,542 --> 00:47:25,710 Thank you. Nice to meet you. 879 00:47:25,710 --> 00:47:26,511 Thank you for the recommendations. 880 00:47:26,511 --> 00:47:28,379 - Yeah. - Nice meeting you. 881 00:47:28,379 --> 00:47:29,414 - Nice to meet you. - Ready? 882 00:47:29,414 --> 00:47:31,216 Nice to meet you, too. 883 00:47:32,250 --> 00:47:33,885 Way easier than I thought it was gonna be. 884 00:47:36,421 --> 00:47:39,724 It's very rewarding to help Americans in the 885 00:47:39,724 --> 00:47:41,692 predicament that they find themselves in with 886 00:47:41,692 --> 00:47:43,028 the drug prices. 887 00:47:43,028 --> 00:47:44,695 In the States, prescription medicine 888 00:47:44,695 --> 00:47:46,597 is handled like a business. 889 00:47:46,597 --> 00:47:49,034 In Canada, it's healthcare. 890 00:47:49,034 --> 00:47:53,404 *sparse curious music 891 00:47:53,404 --> 00:47:56,607 After I wrote this article about insulin costs, 892 00:47:56,607 --> 00:48:00,445 I was deluged with emails from people in Europe, 893 00:48:00,445 --> 00:48:01,712 South America like, "Oh, you know, 894 00:48:01,712 --> 00:48:02,880 my insulin is free! 895 00:48:02,880 --> 00:48:05,583 My insulin costs three pesos as a copay!" 896 00:48:05,583 --> 00:48:08,053 And they were shocked that American patients 897 00:48:08,053 --> 00:48:09,420 have to suffer. 898 00:48:09,420 --> 00:48:10,922 Like, "What do you mean, you know, 899 00:48:10,922 --> 00:48:12,057 you can't-- you run out of insulin?" 900 00:48:12,057 --> 00:48:14,059 It was unheard of! 901 00:48:14,059 --> 00:48:15,927 Based on my own experience with my patient, 902 00:48:15,927 --> 00:48:19,430 I began to learn about the very dark, 903 00:48:19,430 --> 00:48:22,600 sort of twisted system of how our medications work. 904 00:48:22,600 --> 00:48:26,437 So, um, it's-- it's helpful to understand how the supply 905 00:48:26,437 --> 00:48:28,473 chain works. 906 00:48:29,807 --> 00:48:31,642 Let's say we take insulin. 907 00:48:31,642 --> 00:48:35,313 For ease of calculation, I'll say it's 100 dollars a vial. 908 00:48:35,313 --> 00:48:38,583 The pharmaceutical company may sell it to the wholesaler for 909 00:48:38,583 --> 00:48:41,319 110 dollars. 910 00:48:41,319 --> 00:48:46,457 The wholesaler then sells it to the pharmacy for 120 dollars. 911 00:48:46,457 --> 00:48:48,793 Now, they kept 10 dollars of the hundred. 912 00:48:48,793 --> 00:48:52,797 The pharmacy now sells to people who don't have insurance for 130 913 00:48:52,797 --> 00:48:56,467 dollars, so now they get to keep 10 dollars. 914 00:48:56,467 --> 00:49:00,505 So that's what faces people who don't have insurance. 915 00:49:01,372 --> 00:49:04,009 On the other hand... 916 00:49:04,509 --> 00:49:09,014 insurance companies work through pharmacy benefit managers. 917 00:49:09,347 --> 00:49:11,983 Now, pharmacy benefit managers negotiate with the 918 00:49:11,983 --> 00:49:16,454 pharmaceutical company that "I will pay you only 60 dollars for 919 00:49:16,454 --> 00:49:18,023 your insulin." 920 00:49:18,023 --> 00:49:21,826 And so, together, the patient and the pharmacy benefit manager 921 00:49:21,826 --> 00:49:24,996 will pay pharmacies 130... 922 00:49:24,996 --> 00:49:28,799 but PBMs get 50 dollars back from the pharmaceutical company 923 00:49:28,799 --> 00:49:30,901 as a rebate. 924 00:49:31,369 --> 00:49:36,407 Over time, PBMs have realized that the higher the price of the 925 00:49:36,407 --> 00:49:40,545 drug, they can profit more, because pharmaceutical companies 926 00:49:40,545 --> 00:49:45,383 are willing to give rebates on higher-priced medications. 927 00:49:45,383 --> 00:49:48,019 And now that the price of insulin goes up, 928 00:49:48,019 --> 00:49:51,556 everyone in the supply chain is benefiting from a high price, 929 00:49:51,556 --> 00:49:55,693 and the only person who's not benefitting is the patient. 930 00:49:55,693 --> 00:49:58,863 Pharmacy benefit managers have all kinds of deals that-- 931 00:49:58,863 --> 00:50:02,567 you know, to increase revenue with the drug companies. 932 00:50:02,567 --> 00:50:04,169 And of course, no one really knows what these deals are 933 00:50:04,169 --> 00:50:06,871 because they're not transparent. 934 00:50:07,705 --> 00:50:11,042 You know, these middlepeople, they're not really doing any 935 00:50:11,042 --> 00:50:13,411 healthcare for the patient, they're just sort of-- 936 00:50:13,411 --> 00:50:17,048 it's just another layer of-- of bureaucracy, 937 00:50:17,048 --> 00:50:21,052 from which, you know, a lot of money changes hands. 938 00:50:21,052 --> 00:50:24,189 Diabetes is growing, and so the market is ever bigger and bigger 939 00:50:24,189 --> 00:50:25,156 and bigger. 940 00:50:25,156 --> 00:50:27,725 There's a huge amount of money at stake. 941 00:50:38,936 --> 00:50:42,640 So today, we are announcing the Federal Program. 942 00:50:42,640 --> 00:50:47,445 Next week, on the anniversary of Alec Smith's tragic death, 943 00:50:47,445 --> 00:50:51,616 I will be introducing the Emergency Access to Insulin Act. 944 00:50:51,616 --> 00:50:54,919 This type of safety net should be available in each and every 945 00:50:54,919 --> 00:50:57,755 state, and I thank Senator Smith for listening, 946 00:50:57,755 --> 00:51:00,891 for caring, and for actually taking action. 947 00:51:00,891 --> 00:51:01,892 Thank you. 948 00:51:01,892 --> 00:51:03,060 Thank you, Nicole. Good job. 949 00:51:03,060 --> 00:51:04,329 - Thank you. - Good job. 950 00:51:04,329 --> 00:51:06,231 All right, we have time for some questions from members 951 00:51:06,231 --> 00:51:07,098 of the press. 952 00:51:11,969 --> 00:51:16,141 Have you heard any updates on that and whether we might be 953 00:51:16,141 --> 00:51:18,075 moving toward that in the recent days? 954 00:51:18,075 --> 00:51:21,812 From the last I heard, um... 955 00:51:22,012 --> 00:51:26,117 the Governor would approve a special session as long as both 956 00:51:26,117 --> 00:51:29,954 sides-- uh, Senate and House-- could come together and work, 957 00:51:29,954 --> 00:51:32,623 you know, together on a resolution. 958 00:51:38,028 --> 00:51:40,798 Those are always ongoing, yeah. 959 00:51:41,799 --> 00:51:45,136 Thank you for being brave and getting on board with this. 960 00:51:45,136 --> 00:51:46,837 I'm sorry, but insulin can't be given out on a 961 00:51:46,837 --> 00:51:50,107 seven-day supply, so how... 962 00:51:50,107 --> 00:51:51,809 how-- that's-- that will have to be changed. 963 00:51:51,809 --> 00:51:53,144 - Changed, okay. - Yeah. 964 00:51:53,144 --> 00:51:55,780 Whatever kind of reason there was for that, 965 00:51:55,780 --> 00:51:56,481 I'm not sure. 966 00:51:56,481 --> 00:51:57,782 - Okay. - But let's check in. 967 00:51:57,782 --> 00:51:58,783 Okay. 968 00:51:58,783 --> 00:52:00,117 Because we're just announcing the bill today. 969 00:52:00,117 --> 00:52:01,952 - Yeah, yeah. - It's not dropping. 970 00:52:01,952 --> 00:52:02,987 - Yeah. - And even after it does, 971 00:52:02,987 --> 00:52:03,954 - we can still... - Yeah, yeah. 972 00:52:03,954 --> 00:52:05,656 - You know, modify. - Yeah. 973 00:52:05,656 --> 00:52:06,924 - But thank you-- - Yeah. 974 00:52:06,924 --> 00:52:09,794 Because if that is, in fact, the case, we do not wanna do that. 975 00:52:09,794 --> 00:52:11,061 Yeah. 976 00:52:11,061 --> 00:52:15,032 The work that you all have been doing has changed the discussion 977 00:52:15,032 --> 00:52:18,303 around the importance of access to insulin, 978 00:52:18,303 --> 00:52:20,838 and I'm just so grateful for what you've done. 979 00:52:20,838 --> 00:52:22,006 Thank you! 980 00:52:22,006 --> 00:52:23,308 Glad to be a partner with you in all of this. 981 00:52:23,308 --> 00:52:25,042 [laughs] Yes! 982 00:52:25,042 --> 00:52:26,677 We need all of the partners that we can get. 983 00:52:26,677 --> 00:52:29,146 Yes, we do, I know! 984 00:52:31,048 --> 00:52:42,327 *mellow heartwarming music 985 00:52:42,327 --> 00:52:43,694 Do you need more mulch? 986 00:52:43,694 --> 00:52:46,063 - No. - Okay. 987 00:52:46,397 --> 00:52:49,334 I'm gonna run to Menards and get some of that filler. 988 00:52:49,334 --> 00:52:50,468 'Cause I'm filling that hole. 989 00:52:50,468 --> 00:52:52,703 Filling the hole is not gonna do anything! 990 00:52:52,703 --> 00:52:53,971 It is to! 991 00:52:53,971 --> 00:52:55,673 They're just gonna stand there and peck at it until they get 992 00:52:55,673 --> 00:52:57,242 back in! 993 00:52:57,742 --> 00:53:00,177 Will you tell 'em to get out, then? 994 00:53:00,177 --> 00:53:02,213 You're funny. 995 00:53:04,749 --> 00:53:07,084 Oh my goodness... 996 00:53:07,552 --> 00:53:09,186 Nicole's, um... 997 00:53:09,186 --> 00:53:11,356 to me, she's my Superwoman. 998 00:53:11,356 --> 00:53:14,024 That woman will... 999 00:53:14,024 --> 00:53:15,760 write up scripts. 1000 00:53:15,760 --> 00:53:17,895 Anything I say in public, she'll write it up for me ahead of 1001 00:53:17,895 --> 00:53:20,898 time, because I don't have the time to do that. 1002 00:53:21,566 --> 00:53:24,201 My specialty is doing rallies 1003 00:53:24,201 --> 00:53:28,072 and letting my voice be loud and proud. 1004 00:53:28,573 --> 00:53:31,075 All right. 1005 00:53:37,648 --> 00:53:40,084 We should not have had to bury him. 1006 00:53:42,653 --> 00:53:44,922 If there was a way we could go back in time, 1007 00:53:44,922 --> 00:53:47,892 I know it's impossible, but I would love to switch places with 1008 00:53:47,892 --> 00:53:50,928 him and have him here. 1009 00:53:52,963 --> 00:53:56,767 If there was a way we could do that, yup... 1010 00:54:00,938 --> 00:54:03,240 I love my son. 1011 00:54:06,977 --> 00:54:09,947 Every time I hear them chimes, wow. 1012 00:54:12,016 --> 00:54:15,786 It's the partial song of "Amazing Grace." 1013 00:54:15,786 --> 00:54:22,293 *"Amazing Grace" chiming 1014 00:54:27,832 --> 00:54:32,303 [sighs] They're about to vote on Alec's bill. 1015 00:54:33,471 --> 00:54:35,973 468, after line 26, insert. 1016 00:54:35,973 --> 00:54:37,675 This is the A1 amendment. 1017 00:54:37,675 --> 00:54:39,677 To the amendment, Senator Wiklund. 1018 00:54:39,677 --> 00:54:44,114 The A1 amendment is the Alec Smith Emergency, 1019 00:54:44,114 --> 00:54:46,183 um, Insulin Act. 1020 00:54:46,183 --> 00:54:49,153 We've had a lot of discussion about it over the past couple 1021 00:54:49,153 --> 00:54:51,989 weeks, and I urge you to vote yes. 1022 00:54:51,989 --> 00:54:53,290 The Secretary will take the roll on 1023 00:54:53,290 --> 00:54:55,960 the A1 amendment. 1024 00:55:10,741 --> 00:55:14,178 There being 33 ayes and 34 nays, the motion does not prevail and 1025 00:55:14,178 --> 00:55:15,813 the amendment is not adopted. 1026 00:55:22,186 --> 00:55:24,722 It's so frustrating. 1027 00:55:24,722 --> 00:55:28,726 I don't have any patience for them at this point. 1028 00:55:30,094 --> 00:55:33,197 I think it's gonna take a... 1029 00:55:33,197 --> 00:55:36,701 a miracle before something gets done. 1030 00:55:47,545 --> 00:55:49,046 I think this is great. 1031 00:55:49,046 --> 00:55:51,516 Are you a fast talker? 1032 00:55:51,516 --> 00:55:54,051 - Sometimes. - Okay. 1033 00:55:54,051 --> 00:55:55,520 If I get nervous, I could be very fast. 1034 00:55:59,256 --> 00:56:00,891 Is yours on your phone? 1035 00:56:00,891 --> 00:56:02,159 - Yeah. - Yeah. 1036 00:56:02,159 --> 00:56:05,530 I mean, I ha-- 'cause it's like the third thing I've done so... 1037 00:56:05,530 --> 00:56:08,933 That's how I-- I had one twice as long. 1038 00:56:08,933 --> 00:56:11,769 I think if you feel comfortable that you can do this in less 1039 00:56:11,769 --> 00:56:15,372 than three minutes, then I say go for it. 1040 00:56:15,372 --> 00:56:17,074 I know I have to do it. 1041 00:56:17,074 --> 00:56:18,909 - Yeah. - But... 1042 00:56:18,909 --> 00:56:20,945 what it takes out of you is... 1043 00:56:20,945 --> 00:56:25,249 The emotional toll that we experience sharing 1044 00:56:25,249 --> 00:56:29,420 every single time is exhausting. 1045 00:56:29,420 --> 00:56:32,056 It is, and you relive it. 1046 00:56:32,056 --> 00:56:33,924 So... 1047 00:56:38,429 --> 00:56:45,402 *tense ethereal music 1048 00:57:26,176 --> 00:57:27,444 Can I sit with you? 1049 00:57:27,444 --> 00:57:29,313 Yes, Nicole! 1050 00:57:29,313 --> 00:57:31,015 How are you doing? 1051 00:57:31,015 --> 00:57:34,318 You know, worried about baby girl and what's gonna happen in 1052 00:57:34,318 --> 00:57:35,452 two years with her, you know? 1053 00:57:35,452 --> 00:57:37,321 Right. How is she doing now? 1054 00:57:37,321 --> 00:57:39,323 She's in college; she's at the University of Toledo. 1055 00:57:39,323 --> 00:57:41,158 - Yeah. - So... 1056 00:57:41,158 --> 00:57:42,993 - And that's going well? - It's driving me crazy. 1057 00:57:42,993 --> 00:57:44,461 - - She's away from home but... 1058 00:57:44,461 --> 00:57:45,996 That's so hard! 1059 00:57:45,996 --> 00:57:47,498 It is! 1060 00:57:47,498 --> 00:57:51,001 I'm scared I'm gonna lose her just like I lost Antavia. 1061 00:57:51,001 --> 00:57:54,338 All because she couldn't afford her insulin. 1062 00:57:54,338 --> 00:57:57,174 I was 15 years old when I had her. 1063 00:57:57,174 --> 00:58:00,144 Never once thought that my baby was gonna be gone at the age of 1064 00:58:00,144 --> 00:58:02,479 22 years old... 1065 00:58:02,479 --> 00:58:04,515 with a whole life in front of her. 1066 00:58:04,515 --> 00:58:06,651 A whole life. 1067 00:58:06,651 --> 00:58:09,319 Have to stay strong. 1068 00:58:09,319 --> 00:58:11,321 It's hard sometimes. 1069 00:58:15,693 --> 00:58:21,899 *tense ambient music 1070 00:58:28,038 --> 00:58:29,506 Medicine for the people! 1071 00:58:29,506 --> 00:58:31,576 Not for profit! 1072 00:58:31,576 --> 00:58:34,078 - What do we want?! - Insulin for all! 1073 00:58:34,078 --> 00:58:38,382 - When do we want it?! - Now! 1074 00:58:38,382 --> 00:58:40,551 - What do we want?! - Insulin for all! 1075 00:58:40,551 --> 00:58:42,219 - When do we want it?! - Now! 1076 00:58:42,219 --> 00:58:44,054 - What do we want?! - Insulin for all! 1077 00:58:44,054 --> 00:58:45,522 - When do we want it?! - Now! 1078 00:58:45,522 --> 00:58:47,692 - When do we want it?! - Now! 1079 00:58:47,692 --> 00:58:50,227 - When are we demanding it?! - Now! 1080 00:58:50,227 --> 00:58:51,696 - Right now! - Now! 1081 00:58:51,696 --> 00:58:53,530 - Right now! - Now! 1082 00:58:53,530 --> 00:58:55,065 Thank you! 1083 00:59:03,574 --> 00:59:07,477 Joshua died three months ago tomorrow. 1084 00:59:07,477 --> 00:59:09,213 The paramedics had to restart his 1085 00:59:09,213 --> 00:59:12,116 heart twice... 1086 00:59:12,116 --> 00:59:16,453 on the way to the hospital, which was five minutes away. 1087 00:59:16,754 --> 00:59:18,555 My son is Jesimya Scherer-Radcliff, 1088 00:59:18,555 --> 00:59:20,457 but we called him "Jesy." 1089 00:59:20,457 --> 00:59:22,259 After not being able to get in touch with him, 1090 00:59:22,259 --> 00:59:24,428 we found Jesy in his home. 1091 00:59:24,428 --> 00:59:27,965 He had passed away from diabetic ketoacidosis. 1092 00:59:27,965 --> 00:59:30,300 810 days. 1093 00:59:31,101 --> 00:59:35,272 That's how many days it's been since Alec's body was found. 1094 00:59:35,272 --> 00:59:38,976 810 days of pure pain. 1095 00:59:38,976 --> 00:59:43,748 I've not had a peaceful night's sleep or a day without thoughts. 1096 00:59:45,650 --> 00:59:49,620 I will not rest until I have seen justice for the lives that 1097 00:59:49,620 --> 00:59:54,591 Pharma, our healthcare system, and our government has taken. 1098 00:59:54,591 --> 01:00:04,434 *crowd humming "Amazing Grace"โ™ช 1099 01:00:13,343 --> 01:00:17,447 *Amazing grace 1100 01:00:17,447 --> 01:00:22,152 *How sweet the sound 1101 01:00:22,152 --> 01:00:26,323 *That saved a wretch 1102 01:00:26,323 --> 01:00:30,327 *Like me 1103 01:00:30,327 --> 01:00:34,298 *I once was lost 1104 01:00:34,298 --> 01:00:38,502 *But now, I'm found 1105 01:00:38,502 --> 01:00:40,304 *Was blind... 1106 01:00:41,672 --> 01:00:44,641 No justice, no peace! 1107 01:00:44,641 --> 01:00:47,544 No justice, no peace! 1108 01:00:47,544 --> 01:00:49,346 Justice for Kayla! 1109 01:00:49,346 --> 01:00:51,481 Justice for Kayla! 1110 01:00:51,481 --> 01:00:53,483 Justice for Jada! 1111 01:00:53,483 --> 01:00:55,519 Justice for Jada! 1112 01:00:55,519 --> 01:00:57,822 Justice for Alec! 1113 01:00:57,822 --> 01:01:01,191 Justice for Alec! 1114 01:01:01,191 --> 01:01:03,660 No justice, no peace! 1115 01:01:03,660 --> 01:01:07,064 No justice, no peace! 1116 01:01:07,397 --> 01:01:09,533 Justice for Micah! 1117 01:01:12,369 --> 01:01:13,670 No! 1118 01:01:15,372 --> 01:01:17,207 No! 1119 01:01:17,207 --> 01:01:19,376 No justice, no peace! 1120 01:01:19,376 --> 01:01:21,345 No justice, no peace! 1121 01:01:21,345 --> 01:01:23,347 No justice, no peace! 1122 01:01:23,347 --> 01:01:24,514 Joshua! 1123 01:01:24,514 --> 01:01:25,515 Joshua! 1124 01:01:25,515 --> 01:01:26,683 Antavia! 1125 01:01:26,683 --> 01:01:28,085 Antavia! 1126 01:01:28,085 --> 01:01:29,086 Shay! 1127 01:01:29,086 --> 01:01:30,087 Shay! 1128 01:01:30,087 --> 01:01:31,255 Jesimya! 1129 01:01:31,255 --> 01:01:32,222 Jesimya! 1130 01:01:32,222 --> 01:01:33,190 Jessie! 1131 01:01:33,190 --> 01:01:34,191 Jessie! 1132 01:01:34,191 --> 01:01:35,192 Kayla! 1133 01:01:35,192 --> 01:01:36,260 Kayla! 1134 01:01:36,260 --> 01:01:37,094 Andrew! 1135 01:01:37,094 --> 01:01:38,228 Andrew! 1136 01:01:38,228 --> 01:01:39,096 Megan! 1137 01:01:39,096 --> 01:01:39,696 Megan! 1138 01:01:39,696 --> 01:01:40,697 Jada! 1139 01:01:40,697 --> 01:01:42,099 Jada! 1140 01:01:42,099 --> 01:01:43,868 My baby Alec! 1141 01:01:43,868 --> 01:01:45,870 Alec! 1142 01:01:45,870 --> 01:01:47,872 *dramatic music 1143 01:01:47,872 --> 01:01:49,239 No justice, no peace! 1144 01:01:49,239 --> 01:01:51,408 No justice, no peace! 1145 01:01:51,408 --> 01:01:53,543 No justice, no peace! 1146 01:01:53,543 --> 01:01:55,880 No justice, no peace! 1147 01:01:55,880 --> 01:02:05,722 No justice, no peace! 1148 01:02:17,935 --> 01:02:27,611 *ethereal ambient music 1149 01:02:41,591 --> 01:02:43,760 Your Dex is still not working. 1150 01:02:46,663 --> 01:02:49,299 What's your blood sugar? 1151 01:02:49,299 --> 01:02:52,336 It's 123. 1152 01:02:52,336 --> 01:02:54,638 Okay, check your bluetooth and make sure that it's on, 1153 01:02:54,638 --> 01:02:56,340 'cause I'm not getting anything. 1154 01:02:56,340 --> 01:02:57,942 Yeah, I know; Grandma already called me. 1155 01:02:57,942 --> 01:02:59,944 Grandma called you too? 1156 01:02:59,944 --> 01:03:00,777 Yes. 1157 01:03:00,777 --> 01:03:03,347 All right, bye. 1158 01:03:03,347 --> 01:03:05,315 - 'Kay, bye, love you. - Love you too. 1159 01:03:08,685 --> 01:03:12,322 We're coming up on four years of everything... 1160 01:03:12,322 --> 01:03:16,326 being more okay than what it was. 1161 01:03:16,326 --> 01:03:17,962 Maybe has something to do with the date. 1162 01:03:17,962 --> 01:03:20,364 All that looks good, right, Sandra? 1163 01:03:20,364 --> 01:03:23,200 Yeah, it looks fine on this end... 1164 01:03:23,200 --> 01:03:27,371 Going from having nothing to having a job, 1165 01:03:27,371 --> 01:03:30,507 a decent-running vehicle... 1166 01:03:30,507 --> 01:03:35,379 sometimes I have to pinch myself. 1167 01:03:35,712 --> 01:03:39,884 I'm always scared of going backwards because I had 1168 01:03:39,884 --> 01:03:44,321 everything and then I lost it, and had to start all over. 1169 01:03:47,391 --> 01:03:49,860 The health insurance I have through my employer is really 1170 01:03:49,860 --> 01:03:55,399 good, but it doesn't always pay for everything. 1171 01:03:55,399 --> 01:03:58,702 Even with great insurance, there's still a cost for all the 1172 01:03:58,702 --> 01:04:01,505 supplies that two people use. 1173 01:04:09,246 --> 01:04:14,418 I work side jobs, just so we have the things that we need. 1174 01:04:25,930 --> 01:04:27,564 I don't know what I wanna do when I grow up. 1175 01:04:27,564 --> 01:04:29,733 I wanna talk to... 1176 01:04:29,733 --> 01:04:32,769 like, reinforcement, like, police officers, 1177 01:04:32,769 --> 01:04:35,405 but at the same time, like, people are like, 1178 01:04:35,405 --> 01:04:39,409 "You shouldn't be a type-1 diabetic working with police," 1179 01:04:39,409 --> 01:04:41,878 and I think that they're just dumb when they say that 1180 01:04:41,878 --> 01:04:43,413 because... 1181 01:04:43,413 --> 01:04:45,415 you can do anything when you're a type-1, 1182 01:04:45,415 --> 01:04:48,418 you just have to be cautious. 1183 01:04:48,418 --> 01:04:50,787 But for now, like... 1184 01:04:50,787 --> 01:04:53,557 it's important for me to get a good job. 1185 01:04:57,928 --> 01:05:00,630 My mom does not get paid enough 1186 01:05:00,630 --> 01:05:03,900 to pay for everything. 1187 01:05:05,802 --> 01:05:09,606 When I turn 26 and I have to pay for my own stuff, 1188 01:05:09,606 --> 01:05:12,776 I'm a little scared. 1189 01:05:14,644 --> 01:05:17,747 Like, I have nightmares about being homeless again. 1190 01:05:21,618 --> 01:05:25,622 I never thought that my child... 1191 01:05:25,622 --> 01:05:28,325 would really... 1192 01:05:28,325 --> 01:05:31,795 hold onto that... 1193 01:05:31,795 --> 01:05:34,931 necessity of getting a job so young. 1194 01:05:34,931 --> 01:05:36,666 Good luck! Love you! 1195 01:05:36,666 --> 01:05:39,003 Love you too! 1196 01:05:39,336 --> 01:05:40,604 See, you gotta get used to the pressure because 1197 01:05:40,604 --> 01:05:42,472 it flies. 1198 01:05:42,472 --> 01:05:45,109 I'm so proud of her, 1199 01:05:45,109 --> 01:05:46,810 but at 14, 1200 01:05:46,810 --> 01:05:50,480 you shouldn't get a job to have to pay for medical supplies. 1201 01:05:50,814 --> 01:05:54,518 Just... shake it out. 1202 01:05:54,518 --> 01:05:58,355 14-year-olds should be working for their fun things, not... 1203 01:05:58,355 --> 01:06:00,657 to stay alive. 1204 01:06:04,661 --> 01:06:07,364 After a two-year battle, the Minnesota House and Senate today 1205 01:06:07,364 --> 01:06:09,966 both passed the Alec Smith Emergency Insulin Bill. 1206 01:06:11,735 --> 01:06:13,837 Amidst the pandemic precautions of masks and social 1207 01:06:13,837 --> 01:06:16,806 distancing, the legislature moved forward with an emergency 1208 01:06:16,806 --> 01:06:17,841 insulin bill. 1209 01:06:17,841 --> 01:06:20,010 This is a good day in Minnesota. 1210 01:06:20,010 --> 01:06:22,646 Nicole Smith-Holt sat in the House gallery as the 1211 01:06:22,646 --> 01:06:24,381 vote was announced. 1212 01:06:24,381 --> 01:06:28,018 There being 111 ayes and 22 nays, 1213 01:06:28,018 --> 01:06:30,687 the bill is passed as amended by conference and its title 1214 01:06:30,687 --> 01:06:32,822 agreed to. 1215 01:06:32,822 --> 01:06:39,063 *uplifting music 1216 01:06:39,063 --> 01:06:41,665 When we heard the final verdict that it passed, 1217 01:06:41,665 --> 01:06:43,167 it was a celebration. 1218 01:06:43,167 --> 01:06:45,001 It was like fireworks going off. 1219 01:06:45,001 --> 01:06:46,870 It was like the final chapter. 1220 01:06:46,870 --> 01:06:50,174 You know, it was like the conclusion. 1221 01:06:50,174 --> 01:06:53,177 It was like, "Okay, we've done it." 1222 01:06:59,015 --> 01:07:01,051 So what comes next? 1223 01:07:01,051 --> 01:07:06,556 We're really, really excited to have created a bill 1224 01:07:06,556 --> 01:07:07,957 and... 1225 01:07:07,957 --> 01:07:11,728 to have other states wanting to replicate it. 1226 01:07:11,728 --> 01:07:15,932 I helped Maine and Colorado with their bills, 1227 01:07:15,932 --> 01:07:19,736 and there's other states that want to have a similar 1228 01:07:19,736 --> 01:07:21,805 bill to Alec's. 1229 01:07:21,805 --> 01:07:25,575 Tina Smith is really working hard to create something similar 1230 01:07:25,575 --> 01:07:27,911 on the federal level. 1231 01:07:27,911 --> 01:07:30,447 Pharma's challenging the bill and, 1232 01:07:30,447 --> 01:07:32,582 you know, suing the state of Minnesota. 1233 01:07:34,584 --> 01:07:38,455 You know, it's been a really rough four years. 1234 01:07:38,455 --> 01:07:40,624 Um... 1235 01:07:40,624 --> 01:07:42,592 I was-- I was a shell of a person. 1236 01:07:42,592 --> 01:07:44,094 I was not... 1237 01:07:44,094 --> 01:07:47,931 I was not capable of being a mom. 1238 01:07:47,931 --> 01:07:51,935 I-- I needed to-- to mourn, 1239 01:07:51,935 --> 01:07:56,072 and I needed to grieve, and I needed to escape. 1240 01:07:57,741 --> 01:08:00,777 Um... 1241 01:08:03,147 --> 01:08:07,917 And my advocacy was a way for me to-- to do that. 1242 01:08:11,121 --> 01:08:13,790 Since Alec's bill been passed into law, 1243 01:08:13,790 --> 01:08:17,827 over 600 people's been saved-- their lives' been saved. 1244 01:08:18,128 --> 01:08:20,997 So the bill is working. 1245 01:08:20,997 --> 01:08:22,932 How proud does that make you feel? 1246 01:08:22,932 --> 01:08:25,969 Very proud. Ecstatic. 1247 01:08:26,170 --> 01:08:28,638 I know Alec is watching. 1248 01:08:28,638 --> 01:08:30,940 And he's saying, "Nobody else." 1249 01:08:30,940 --> 01:08:33,143 He's an angel. 1250 01:08:33,643 --> 01:08:36,112 But you know, the fight doesn't stop just because we won this 1251 01:08:36,112 --> 01:08:37,347 small battle. 1252 01:08:37,347 --> 01:08:41,151 You know, we still have a war to win and-- and ultimately, 1253 01:08:41,151 --> 01:08:44,521 we don't stop fighting until we've won that. 1254 01:08:51,995 --> 01:08:53,129 Hey! 1255 01:08:53,129 --> 01:08:54,298 How y'all doing? 1256 01:08:54,298 --> 01:08:56,166 Glad y'all could make it! 1257 01:08:56,166 --> 01:08:58,668 4th of July at our house tends to be a big 1258 01:08:58,668 --> 01:09:00,837 celebration. 1259 01:09:00,837 --> 01:09:03,006 Come to grandma! 1260 01:09:03,006 --> 01:09:05,141 It's just a way to celebrate Alec since it was 1261 01:09:05,141 --> 01:09:08,011 his favorite holiday. 1262 01:09:08,011 --> 01:09:09,679 Food is ready for whomever would like 1263 01:09:09,679 --> 01:09:11,014 to make a plate! 1264 01:09:11,014 --> 01:09:12,015 It all looks so good! 1265 01:09:12,015 --> 01:09:13,116 It's a time for people to... 1266 01:09:13,116 --> 01:09:16,553 to share stories of Alec and to remember him. 1267 01:09:16,553 --> 01:09:19,022 Alec, he couldn't get into that damn house! 1268 01:09:20,156 --> 01:09:21,325 This is one of his best friends. 1269 01:09:24,060 --> 01:09:25,895 You know, it can be a lot of fun, 1270 01:09:25,895 --> 01:09:27,697 but it could also be really sad. 1271 01:09:27,697 --> 01:09:30,734 - I love you. - I love you too, man. 1272 01:09:30,734 --> 01:09:31,668 You know what? 1273 01:09:31,668 --> 01:09:34,170 Tonight, we celebrate the bill passing. 1274 01:09:34,170 --> 01:09:36,039 No one else has to die 1275 01:09:36,039 --> 01:09:39,008 because they can't afford insulin. 1276 01:09:39,008 --> 01:09:42,045 My son's not with me... 1277 01:09:42,045 --> 01:09:46,049 in the body, but he's in my spirit. 1278 01:09:47,050 --> 01:09:48,585 Long live Al. 1279 01:09:48,585 --> 01:09:51,255 - Long live Al! - Long live Al. 1280 01:09:51,888 --> 01:09:54,057 Yup. 1281 01:09:54,057 --> 01:09:56,025 - That's a fact! - Love you, bro! 1282 01:09:56,025 --> 01:09:56,860 Love you! 1283 01:09:56,860 --> 01:09:58,562 We're always connected. 1284 01:10:03,900 --> 01:10:05,369 Mm. 1285 01:10:05,369 --> 01:10:07,103 Mm! 1286 01:10:09,739 --> 01:10:11,741 You ready?! 1287 01:10:20,884 --> 01:10:22,252 Tell 'em! 1288 01:10:23,753 --> 01:10:25,789 Tell 'em! 1289 01:10:25,789 --> 01:10:34,598 *uplifting music 1290 01:11:01,291 --> 01:11:08,298 *heartwarming mellow music 1291 01:11:46,169 --> 01:11:57,681 *ethereal music 97214

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