1 00:00:01,439 --> 00:00:03,040 We spend a lot of time barking at 2 00:00:03,040 --> 00:00:05,040 one another. What really gets through to people 3 00:00:05,040 --> 00:00:08,160 is human connection and storytelling. Think about what 4 00:00:08,160 --> 00:00:11,359 they feel is the most relevant to them 5 00:00:11,359 --> 00:00:13,815 right now and share that. That may be 6 00:00:13,815 --> 00:00:15,575 as a caregiver. That may be as a 7 00:00:15,575 --> 00:00:18,295 parent. That may be as someone with a 8 00:00:18,295 --> 00:00:21,414 chronic condition, but all of those matter. It 9 00:00:21,414 --> 00:00:23,114 doesn't have to be the most dire. 10 00:00:28,135 --> 00:00:30,910 Welcome to Boundless Bee, the Hemophilia Bee podcast, 11 00:00:30,910 --> 00:00:32,829 the podcast standing with you from a family 12 00:00:32,829 --> 00:00:35,649 like yours, presented by the Coalition for Hemophilia 13 00:00:35,789 --> 00:00:38,289 Bee and in partnership with Balancing Life's Issues. 14 00:00:38,590 --> 00:00:41,549 Today's guest brings a powerful combination of policy 15 00:00:41,549 --> 00:00:43,969 expertise and storytelling savvy to the table. 16 00:00:44,484 --> 00:00:46,965 Allison Betty is the cofounder of AlignCo, a 17 00:00:46,965 --> 00:00:49,865 firm known for designing breakthrough campaigns that translate 18 00:00:49,924 --> 00:00:52,905 complex policy into human centered action. 19 00:00:53,204 --> 00:00:55,125 She's worked to promote and defend the Affordable 20 00:00:55,125 --> 00:00:57,385 Care Act, protect Medicare and Medicaid, 21 00:00:57,765 --> 00:00:59,844 and advocate for the kinds of policies that 22 00:00:59,844 --> 00:01:03,090 uplift children, families, and patients across the country. 23 00:01:03,090 --> 00:01:04,950 Allison, welcome to Boundless Speed. 24 00:01:07,650 --> 00:01:09,409 Thanks so much. It's great to be here. 25 00:01:09,409 --> 00:01:10,769 Just wanted to start out with a little 26 00:01:10,769 --> 00:01:12,689 bit of your background, passion of the work 27 00:01:12,689 --> 00:01:14,694 you do, because you've had such a unique 28 00:01:14,694 --> 00:01:18,375 career from Capitol Hill to launching AlignCo. So 29 00:01:18,375 --> 00:01:19,655 can you walk us through how your path 30 00:01:19,655 --> 00:01:21,515 led you to become one of the country's 31 00:01:21,575 --> 00:01:24,635 go to experts in advocacy driven communications? 32 00:01:25,590 --> 00:01:27,189 Thank you. Well, I wish I could say 33 00:01:27,189 --> 00:01:29,989 that was a a a linear path, but 34 00:01:29,989 --> 00:01:32,869 it certainly wasn't and isn't for many people. 35 00:01:32,869 --> 00:01:33,849 I wanted 36 00:01:34,310 --> 00:01:35,989 to do what I could in my career 37 00:01:35,989 --> 00:01:37,670 to make the world a better place. That 38 00:01:37,670 --> 00:01:40,170 started with working on a campaign in Connecticut 39 00:01:40,465 --> 00:01:42,084 for congresswoman Rosa DeLauro. 40 00:01:42,465 --> 00:01:44,325 I was lucky enough to come to Washington 41 00:01:44,625 --> 00:01:45,685 after she won that 42 00:01:46,224 --> 00:01:46,724 election. 43 00:01:47,185 --> 00:01:48,325 That was a great campaign. 44 00:01:49,185 --> 00:01:52,224 And from there, had the great fortune of 45 00:01:52,224 --> 00:01:54,885 meeting many people along the way 46 00:01:55,370 --> 00:01:58,890 who taught me what advocacy looks like. And 47 00:01:58,890 --> 00:01:59,390 advocacy 48 00:01:59,930 --> 00:02:02,189 lives in many places, not just with advocacy 49 00:02:02,250 --> 00:02:02,750 organizations. 50 00:02:03,049 --> 00:02:05,689 Right? Mhmm. And I learned that from Rosa 51 00:02:05,689 --> 00:02:06,189 DeLauro. 52 00:02:06,650 --> 00:02:08,444 I learned that from Billy Shore at Share 53 00:02:08,444 --> 00:02:09,104 Our Strength. And 54 00:02:09,405 --> 00:02:12,305 I worked for a wonderful company called GMMB 55 00:02:12,444 --> 00:02:13,264 for many years 56 00:02:13,564 --> 00:02:15,085 that taught me how to do that across 57 00:02:15,085 --> 00:02:17,085 many issues. So I'm excited to have my 58 00:02:17,085 --> 00:02:19,645 own company and share that with others. Yeah. 59 00:02:19,645 --> 00:02:21,724 Yeah. And I think that advocacy piece is 60 00:02:21,724 --> 00:02:24,090 such an important thing, especially this year. And 61 00:02:24,090 --> 00:02:24,750 I know 62 00:02:25,290 --> 00:02:27,530 the coalition for hemophilia be, you know, needs 63 00:02:27,530 --> 00:02:30,090 the community to kinda get behind this idea 64 00:02:30,090 --> 00:02:31,230 of advocacy. So 65 00:02:31,689 --> 00:02:34,090 can you maybe dispel a little bit of 66 00:02:34,090 --> 00:02:36,730 the maybe anxious or nervous feelings people get 67 00:02:36,730 --> 00:02:38,349 when they when they think about advocacy? 68 00:02:39,584 --> 00:02:42,305 Yes. I think advocacy has been become kind 69 00:02:42,305 --> 00:02:44,784 of a loaded word, hasn't it? Yes. When 70 00:02:44,944 --> 00:02:46,705 and truth of the matter is that is 71 00:02:46,705 --> 00:02:49,104 the main function that we all have to 72 00:02:49,104 --> 00:02:51,599 speak out for ourselves and each other. We're 73 00:02:51,599 --> 00:02:52,580 all advocates 74 00:02:53,039 --> 00:02:55,039 because we all care. We care about our 75 00:02:55,039 --> 00:02:57,280 neighbors. We care about the communities we serve. 76 00:02:57,439 --> 00:02:59,680 We care about our families. And just as 77 00:02:59,680 --> 00:03:01,459 if you were a patient advocate 78 00:03:01,759 --> 00:03:03,854 for a child or a spouse in the 79 00:03:03,854 --> 00:03:05,534 hospital and making sure they get what they 80 00:03:05,534 --> 00:03:06,034 need. 81 00:03:06,574 --> 00:03:08,495 We all are advocates looking out for one 82 00:03:08,495 --> 00:03:10,974 another. So I think sometimes it gets a 83 00:03:10,974 --> 00:03:11,794 little political 84 00:03:12,094 --> 00:03:12,835 too quick 85 00:03:13,534 --> 00:03:15,314 when in fact, I see advocacy 86 00:03:15,854 --> 00:03:18,675 as simply speaking your truth and speaking out. 87 00:03:18,814 --> 00:03:20,830 Yeah. Yeah. That's that's so well said. And 88 00:03:20,830 --> 00:03:22,830 I think the political point is is really 89 00:03:22,830 --> 00:03:24,209 unfortunate right now because 90 00:03:24,750 --> 00:03:26,509 I I don't know about you, but no 91 00:03:26,509 --> 00:03:28,610 matter where I look, it just feels overwhelming. 92 00:03:28,830 --> 00:03:31,169 It feels negative. It feels polarizing, 93 00:03:31,885 --> 00:03:33,805 and it feels scary. And I I would 94 00:03:33,805 --> 00:03:35,805 say that across the board. And so I 95 00:03:35,805 --> 00:03:37,665 think for the work of what you do, 96 00:03:38,045 --> 00:03:39,724 this feels like a unique time in that 97 00:03:39,724 --> 00:03:41,965 sense. But what keeps you inspired and grounded 98 00:03:41,965 --> 00:03:44,284 in in this work, especially when things just 99 00:03:44,284 --> 00:03:45,185 feel so charged? 100 00:03:46,449 --> 00:03:49,569 I believe in the power of, humans, and 101 00:03:49,569 --> 00:03:51,009 I believe in the power of the human 102 00:03:51,009 --> 00:03:52,849 spirit. And I believe that both ways. We 103 00:03:52,849 --> 00:03:54,389 are capable of great change. 104 00:03:54,849 --> 00:03:55,829 We are experiencing 105 00:03:56,129 --> 00:03:58,069 massive disruption right now. 106 00:03:58,370 --> 00:03:58,870 Mhmm. 107 00:03:59,604 --> 00:04:01,925 And we have certainly on the issues we'll 108 00:04:01,925 --> 00:04:04,405 likely talk about, like Medicaid and Medicare and 109 00:04:04,405 --> 00:04:06,264 health care issues, differing opinions. 110 00:04:07,364 --> 00:04:09,465 But I don't think a day goes by 111 00:04:10,485 --> 00:04:12,905 when if I'm present and I'm aware 112 00:04:13,444 --> 00:04:14,104 to notice 113 00:04:15,610 --> 00:04:18,649 the small kindnesses that happen between all of 114 00:04:18,649 --> 00:04:20,269 us every day. Mhmm. 115 00:04:20,649 --> 00:04:22,329 In fact, today's a very hot day in 116 00:04:22,329 --> 00:04:24,410 Washington, DC. I was driving to work, and 117 00:04:24,410 --> 00:04:25,769 there was a gentleman in a car in 118 00:04:25,769 --> 00:04:28,009 front of me passing out cold bottles of 119 00:04:28,009 --> 00:04:28,990 water to people 120 00:04:29,504 --> 00:04:32,384 who, were likely unhoused. Right. What he could 121 00:04:32,384 --> 00:04:34,544 do that day. Mhmm. And I believe we 122 00:04:34,544 --> 00:04:36,625 all do those kind of micro acts of 123 00:04:36,625 --> 00:04:38,725 kindness, and those things add up. 124 00:04:39,104 --> 00:04:41,285 So I try not to let the larger 125 00:04:42,500 --> 00:04:44,439 crises that feel existential 126 00:04:45,060 --> 00:04:46,740 get in the way of the way I 127 00:04:46,740 --> 00:04:47,720 see humans. 128 00:04:48,100 --> 00:04:50,180 Yeah. That I mean, that's that's so beautifully 129 00:04:50,180 --> 00:04:52,740 said. And I think from, you know, like, 130 00:04:52,740 --> 00:04:54,259 how I feel about it is you can 131 00:04:54,259 --> 00:04:56,660 shut down so easily. Right? When those kinda 132 00:04:56,660 --> 00:04:59,834 existential things that are either perceived or or 133 00:04:59,834 --> 00:05:01,834 real just kinda feel like they're crashing down 134 00:05:01,834 --> 00:05:03,615 on you. So I think the challenge 135 00:05:04,314 --> 00:05:06,634 of not shutting down and continue to advocate, 136 00:05:06,954 --> 00:05:09,194 and I think especially in I think your 137 00:05:09,194 --> 00:05:11,294 specialty, which is, you know, health care policy. 138 00:05:11,514 --> 00:05:13,000 Because I know you have you know, that 139 00:05:13,080 --> 00:05:14,680 that's a big part of your background in 140 00:05:14,759 --> 00:05:15,500 at Alignco. 141 00:05:15,800 --> 00:05:18,120 So I guess for our listeners, I think 142 00:05:18,120 --> 00:05:20,600 in as simple terms as possible, what's kind 143 00:05:20,600 --> 00:05:22,360 of happening right now with with health care 144 00:05:22,360 --> 00:05:24,040 policy, and how do you keep up with 145 00:05:24,040 --> 00:05:26,439 it? And especially with kinda like rare diseases 146 00:05:26,439 --> 00:05:27,819 like hemophilia b. 147 00:05:28,714 --> 00:05:31,514 Well, it's really moving fast, particularly right now. 148 00:05:31,514 --> 00:05:34,474 During this conversation, we are waiting for more 149 00:05:34,474 --> 00:05:36,954 information from the senate as they work to 150 00:05:36,954 --> 00:05:37,454 finalize 151 00:05:38,074 --> 00:05:38,974 their reconciliation 152 00:05:39,274 --> 00:05:42,235 bill. This is after the house has sent 153 00:05:42,235 --> 00:05:43,350 their version over. 154 00:05:43,830 --> 00:05:45,670 There is a great deal of confusion about 155 00:05:45,670 --> 00:05:47,509 whether or not the senate will be ready 156 00:05:47,509 --> 00:05:49,029 to pass this bill, which they'd like to 157 00:05:49,029 --> 00:05:50,550 do before the July 4. And then it 158 00:05:50,550 --> 00:05:52,550 will go back to the house, and there's 159 00:05:52,550 --> 00:05:54,629 some concern that the house won't be happy, 160 00:05:54,629 --> 00:05:56,535 of course, with what the senate has done. 161 00:05:57,014 --> 00:05:59,355 Mhmm. Overall, on either bill, 162 00:06:00,455 --> 00:06:01,194 the reconciliation 163 00:06:02,774 --> 00:06:03,274 process 164 00:06:03,574 --> 00:06:06,375 is one that only some things can pass 165 00:06:06,375 --> 00:06:08,455 that have, what we call pay fors. Right? 166 00:06:08,455 --> 00:06:09,689 They have to be they have to be 167 00:06:09,689 --> 00:06:11,090 expensed and paid for, and it goes through 168 00:06:11,090 --> 00:06:13,210 a great deal of review process with both 169 00:06:13,210 --> 00:06:13,870 the parliamentarian 170 00:06:14,330 --> 00:06:16,430 and the CBO budget office. 171 00:06:17,529 --> 00:06:18,029 But 172 00:06:18,730 --> 00:06:21,449 we can expect, no matter what at this 173 00:06:21,449 --> 00:06:21,949 juncture, 174 00:06:23,024 --> 00:06:26,384 pretty significant changes to Medicaid. I think the 175 00:06:26,384 --> 00:06:28,324 most likely is a work requirement. 176 00:06:29,425 --> 00:06:29,925 That 177 00:06:30,225 --> 00:06:32,704 means that most people will have to prove 178 00:06:32,704 --> 00:06:34,004 that they are either working 179 00:06:34,919 --> 00:06:37,479 in some sort of caregiving situation in school 180 00:06:37,479 --> 00:06:39,740 or others that has not been completely determined 181 00:06:40,519 --> 00:06:43,000 in order to qualify for Medicaid benefits. Keep 182 00:06:43,000 --> 00:06:44,759 in mind, and many of your listeners may 183 00:06:44,759 --> 00:06:47,295 know this, you have to be pretty low 184 00:06:47,295 --> 00:06:49,295 income to even qualify for Medicaid in the 185 00:06:49,295 --> 00:06:51,555 first place. So this is an additional, 186 00:06:52,574 --> 00:06:53,475 really cumbersome, 187 00:06:53,935 --> 00:06:55,154 call it red tape. 188 00:06:55,455 --> 00:06:57,375 Yeah. That is just one more thing people 189 00:06:57,375 --> 00:06:59,615 have to do. Secondly, those on the health 190 00:06:59,615 --> 00:07:00,834 insurance marketplace 191 00:07:01,229 --> 00:07:03,709 will experience some changes that make it harder 192 00:07:03,709 --> 00:07:05,169 for them to get that coverage. 193 00:07:06,029 --> 00:07:08,370 Things like no more automatic renewals 194 00:07:08,990 --> 00:07:09,810 and preverifications 195 00:07:10,269 --> 00:07:12,750 before you even begin the renewal process, which 196 00:07:12,750 --> 00:07:13,889 can be pretty significant. 197 00:07:15,254 --> 00:07:15,915 And third, 198 00:07:16,375 --> 00:07:18,375 an increase in premiums, and we expect we 199 00:07:18,375 --> 00:07:20,555 expect to see that across the market. 200 00:07:20,935 --> 00:07:22,774 So I guess what I would call this 201 00:07:22,774 --> 00:07:25,495 in a way is like being nibbled to 202 00:07:25,495 --> 00:07:26,394 death by ducks. 203 00:07:27,189 --> 00:07:29,829 It's not one big change in one place, 204 00:07:29,829 --> 00:07:31,290 although they are quite significant. 205 00:07:31,990 --> 00:07:34,470 There are many more. I'm only mentioning three 206 00:07:34,470 --> 00:07:36,730 that are larger, but there are many more 207 00:07:37,189 --> 00:07:39,509 that have a significant impact on how we 208 00:07:39,509 --> 00:07:40,649 access our care, 209 00:07:40,954 --> 00:07:43,115 how we keep that care, and ensure that 210 00:07:43,115 --> 00:07:44,334 we're getting what we need. 211 00:07:44,634 --> 00:07:46,975 So I I think maybe what the listeners 212 00:07:47,274 --> 00:07:49,274 need to hear about is, like, where can 213 00:07:49,274 --> 00:07:50,735 we keep up with this information, 214 00:07:51,834 --> 00:07:54,475 as things change? Well, first, I would say 215 00:07:54,475 --> 00:07:56,759 we should not be resigned. This isn't over. 216 00:07:57,480 --> 00:07:59,819 And the first thing that everybody can do 217 00:07:59,960 --> 00:08:01,259 is make their voice heard. 218 00:08:01,879 --> 00:08:03,660 And however they find that that's appropriate, 219 00:08:03,960 --> 00:08:06,060 they wanna post something on social media. 220 00:08:06,439 --> 00:08:08,860 Perhaps you wanna call your member of Congress, 221 00:08:08,974 --> 00:08:10,814 your Senator. Perhaps you want to talk to 222 00:08:10,814 --> 00:08:12,334 your friends and family and your neighbors and 223 00:08:12,334 --> 00:08:14,035 be sure that they're aware of this. 224 00:08:14,495 --> 00:08:16,115 It is very well reported. 225 00:08:16,495 --> 00:08:18,334 You can simply Google it to find it. 226 00:08:18,334 --> 00:08:20,595 But if you're looking for places and organizations 227 00:08:20,814 --> 00:08:22,974 and patient groups that are keeping up with 228 00:08:22,974 --> 00:08:24,595 this on a pretty regular basis, 229 00:08:24,959 --> 00:08:26,899 I would say the American Heart Association, 230 00:08:27,360 --> 00:08:30,959 the American Cancer Society, Cancer Action Network, which 231 00:08:30,959 --> 00:08:34,500 is their advocacy arm, Leukemia and Lymphoma Society, 232 00:08:35,039 --> 00:08:37,279 are three organizations that are doing kind of 233 00:08:37,279 --> 00:08:39,860 some regular updates to patient communities. 234 00:08:40,264 --> 00:08:42,125 Gotcha. Also, Families USA 235 00:08:42,585 --> 00:08:44,924 is a great organization and Protect Our Care. 236 00:08:44,985 --> 00:08:46,904 Those are all places that you can Google 237 00:08:46,904 --> 00:08:49,144 and get the latest. Right. But the thing 238 00:08:49,144 --> 00:08:50,524 that you can do now 239 00:08:50,904 --> 00:08:53,399 is make your voice heard. Right. Because these 240 00:08:53,399 --> 00:08:55,960 changes are significant and there's such lack of 241 00:08:55,960 --> 00:08:58,379 awareness of this. When it all happens, 242 00:08:59,080 --> 00:09:00,940 people are going to be very upset. 243 00:09:01,320 --> 00:09:03,639 Right. And these things roll out over the 244 00:09:03,639 --> 00:09:04,860 course of three years. 245 00:09:05,315 --> 00:09:06,514 So it could feel like a lot of 246 00:09:06,514 --> 00:09:08,115 small things when in fact it really adds 247 00:09:08,115 --> 00:09:10,195 up. So right now, make your voice heard. 248 00:09:10,195 --> 00:09:11,394 Make your voice heard. And I think it's 249 00:09:11,394 --> 00:09:13,154 kind of that idea of, like, how things 250 00:09:13,154 --> 00:09:15,075 manage to fly under the radar. So, you 251 00:09:15,075 --> 00:09:16,754 know, making your voice heard. And I think 252 00:09:16,754 --> 00:09:19,029 with that, there are so many voices being 253 00:09:19,029 --> 00:09:20,789 heard out there. So could we talk a 254 00:09:20,789 --> 00:09:21,850 little bit about misinformation 255 00:09:22,549 --> 00:09:24,889 messaging and, like, health equity? Because, 256 00:09:25,350 --> 00:09:27,529 you know, we see scientific breakthroughs 257 00:09:27,909 --> 00:09:30,009 but that comes with a flood of information. 258 00:09:30,230 --> 00:09:31,909 I what are some of the biggest challenges 259 00:09:31,909 --> 00:09:34,534 you see when it comes to public understanding 260 00:09:35,154 --> 00:09:37,574 Mhmm. Of health care policy concerning misinformation? 261 00:09:38,115 --> 00:09:39,174 Look. I think the misinformation 262 00:09:39,554 --> 00:09:42,034 is real, and I think it is very 263 00:09:42,034 --> 00:09:45,074 difficult to navigate through social media. So I 264 00:09:45,074 --> 00:09:45,814 would encourage 265 00:09:46,120 --> 00:09:46,620 people 266 00:09:47,000 --> 00:09:48,679 to make sure that they're getting their news 267 00:09:48,679 --> 00:09:49,740 from multiple sources. 268 00:09:50,759 --> 00:09:52,360 Would be the simplest way to do it. 269 00:09:52,360 --> 00:09:54,200 That, that you, if you're on social media, 270 00:09:54,200 --> 00:09:56,519 that you're also checking out traditional media sources 271 00:09:56,519 --> 00:09:58,679 and not just how they're doing that on 272 00:09:58,679 --> 00:10:01,580 social media. Because that misinformation is real and 273 00:10:02,065 --> 00:10:03,904 look, it creates a lot of stress for 274 00:10:03,904 --> 00:10:06,625 everyone Mhmm. To not know whether or not 275 00:10:06,625 --> 00:10:09,105 you're getting the straight scoop and trying to 276 00:10:09,105 --> 00:10:11,345 figure out who you trust. I think we're 277 00:10:11,345 --> 00:10:14,230 even running into conversations right now about whether 278 00:10:14,230 --> 00:10:15,870 or not people feel like they can trust 279 00:10:15,870 --> 00:10:18,290 their doctors or is that becoming more politically 280 00:10:18,350 --> 00:10:20,750 charged. Mhmm. So finding the people that that 281 00:10:20,750 --> 00:10:22,590 you feel that you can trust is important 282 00:10:22,590 --> 00:10:26,049 and sticking with them. Yeah. Anything that is 283 00:10:26,429 --> 00:10:26,929 inflammatory, 284 00:10:27,950 --> 00:10:29,090 points out hypocrisy, 285 00:10:30,825 --> 00:10:32,684 or sounds too good to be true 286 00:10:33,065 --> 00:10:34,745 is probably not where you wanna be on 287 00:10:34,745 --> 00:10:35,884 the facts. Right. 288 00:10:36,345 --> 00:10:39,065 And that's just basic media literacy. Our kids 289 00:10:39,065 --> 00:10:41,065 are learning this in school these days. People 290 00:10:41,065 --> 00:10:42,504 my age have to learn it a little 291 00:10:42,504 --> 00:10:43,485 bit later on. 292 00:10:44,170 --> 00:10:46,009 So, yeah. And there are some things that 293 00:10:46,009 --> 00:10:47,529 are flying under the radar that are that 294 00:10:47,529 --> 00:10:49,389 are we have reason to be concerned about. 295 00:10:49,529 --> 00:10:52,090 Yeah. Yeah. I think, one one tip I've 296 00:10:52,090 --> 00:10:53,850 got that stuck with me is, like, it 297 00:10:53,850 --> 00:10:55,450 should be a little boring when you're reading 298 00:10:55,450 --> 00:10:57,710 it. Right? Like, it should be very fact 299 00:10:57,850 --> 00:11:00,504 oriented, and it shouldn't really have an opinion. 300 00:11:00,504 --> 00:11:02,105 It should just kind of be kind of 301 00:11:02,105 --> 00:11:04,585 telling you what's happening. So maybe listeners can 302 00:11:04,585 --> 00:11:06,665 hold onto that little piece there. That's right. 303 00:11:06,665 --> 00:11:08,105 And, you know, we're so used to an 304 00:11:08,105 --> 00:11:10,285 I in communications, you know, it's all about 305 00:11:10,425 --> 00:11:12,899 what's the headline. Right. Reality is we all 306 00:11:12,899 --> 00:11:14,259 got we all have to read four or 307 00:11:14,259 --> 00:11:17,220 five sentences after that headline. Yeah. Absolutely. And 308 00:11:17,220 --> 00:11:18,740 I think in another one, you said reality. 309 00:11:18,740 --> 00:11:20,419 I think that idea that we live in 310 00:11:20,419 --> 00:11:22,179 separate realities. Right? That's a whole thing that 311 00:11:22,179 --> 00:11:23,940 kinda happens. Like, no. We live we live 312 00:11:23,940 --> 00:11:26,200 in this reality. It is the same thing. 313 00:11:26,485 --> 00:11:28,085 Right? And it's kind of how do you 314 00:11:28,725 --> 00:11:31,125 especially for the hemophilia b community with all 315 00:11:31,125 --> 00:11:32,665 these changes and all the anxieties 316 00:11:33,125 --> 00:11:35,125 of, you know, where's my medication gonna come 317 00:11:35,125 --> 00:11:37,144 from? How is this gonna remain affordable? 318 00:11:37,605 --> 00:11:39,490 How can you sift through that noise and, 319 00:11:39,490 --> 00:11:41,429 you know, remain in a place of advocacy 320 00:11:41,570 --> 00:11:43,730 and and and still moving forward? There's a 321 00:11:43,730 --> 00:11:46,129 great book. It's many years old now. I 322 00:11:46,129 --> 00:11:47,809 think it's called The Bubble that runs an 323 00:11:47,809 --> 00:11:48,309 experiment 324 00:11:48,929 --> 00:11:51,250 and asks puts Republicans in one room and 325 00:11:51,250 --> 00:11:53,570 Democrats in the other or maybe conservative and 326 00:11:53,570 --> 00:11:55,934 liberal and not by party. Ask them both 327 00:11:55,934 --> 00:11:57,154 to Google Florida. 328 00:11:58,334 --> 00:12:01,454 And one group gets political information and the 329 00:12:01,454 --> 00:12:03,315 other group gets vacation information. 330 00:12:04,095 --> 00:12:06,014 Right? This shows you how how separate they 331 00:12:06,014 --> 00:12:08,254 are. Absolutely. I mean, it makes total sense. 332 00:12:08,254 --> 00:12:10,059 So, you know, I I think kinda coming 333 00:12:10,059 --> 00:12:11,759 off this this conversations about, 334 00:12:12,220 --> 00:12:13,899 you know, health care, what what could possibly 335 00:12:13,899 --> 00:12:16,220 be happening, like, making sure we're still raising 336 00:12:16,220 --> 00:12:18,700 our voices out there in however way that 337 00:12:18,700 --> 00:12:20,779 you can, whether it's sending a letter or 338 00:12:20,779 --> 00:12:22,774 maybe it is going to DC. But, you 339 00:12:22,774 --> 00:12:24,774 know, the little things do add up. And 340 00:12:24,774 --> 00:12:25,894 if we go back to the interview we 341 00:12:25,894 --> 00:12:27,975 did with Eric Paulson, he also works in 342 00:12:27,975 --> 00:12:29,754 this world of, like, storytelling 343 00:12:30,295 --> 00:12:31,674 and how can you get 344 00:12:31,975 --> 00:12:33,894 the the story of that person who's going 345 00:12:33,894 --> 00:12:35,815 to be affected to the right person in 346 00:12:35,815 --> 00:12:37,600 the best way possible. So can you tell 347 00:12:37,600 --> 00:12:40,080 us a little more about how empowering patients 348 00:12:40,080 --> 00:12:42,740 and and people in our community with storytelling? 349 00:12:43,120 --> 00:12:45,539 I think that something we often forget 350 00:12:46,000 --> 00:12:48,799 is that we all have very compelling stories 351 00:12:48,799 --> 00:12:49,460 to tell. 352 00:12:50,554 --> 00:12:52,414 They don't need to be 353 00:12:52,955 --> 00:12:54,174 particularly dramatic 354 00:12:54,794 --> 00:12:55,695 to be compelling, 355 00:12:56,554 --> 00:12:58,634 but we need to share our lives with 356 00:12:58,634 --> 00:13:00,634 decision makers in a way that they can 357 00:13:00,634 --> 00:13:02,095 see and feel and understand. 358 00:13:02,639 --> 00:13:04,879 And that is beyond the headline and beyond 359 00:13:04,879 --> 00:13:05,779 the sound bite. 360 00:13:06,559 --> 00:13:07,379 In communications, 361 00:13:07,759 --> 00:13:09,379 we talk about it as a dialogue. 362 00:13:10,080 --> 00:13:12,000 It's not how many billboards and ads I 363 00:13:12,000 --> 00:13:12,899 can put up. 364 00:13:13,519 --> 00:13:16,080 It's my inviting a dialogue. Am I inviting 365 00:13:16,080 --> 00:13:19,284 questions to begin a conversation? And 366 00:13:19,664 --> 00:13:21,264 we spend a lot of time barking at 367 00:13:21,264 --> 00:13:23,584 one another. Even when I worked on Capitol 368 00:13:23,584 --> 00:13:25,345 Hill, you'd pick up the phone and it 369 00:13:25,345 --> 00:13:27,764 was constituents yelling. Mhmm. Right? 370 00:13:28,464 --> 00:13:30,509 But in fact, what really gets through to 371 00:13:30,509 --> 00:13:32,610 people is human connection and storytelling. 372 00:13:33,070 --> 00:13:36,509 Mhmm. So I really encourage people to think 373 00:13:36,509 --> 00:13:37,009 about 374 00:13:37,629 --> 00:13:38,690 what they feel 375 00:13:39,870 --> 00:13:40,850 is the most 376 00:13:41,904 --> 00:13:44,804 relevant to them right now and share that. 377 00:13:45,105 --> 00:13:47,184 Yeah. That may be as a caregiver. That 378 00:13:47,184 --> 00:13:48,404 may be as a parent. 379 00:13:48,945 --> 00:13:51,345 That may be as someone with a chronic 380 00:13:51,345 --> 00:13:51,845 condition, 381 00:13:53,440 --> 00:13:56,080 but all of those matter. It doesn't have 382 00:13:56,080 --> 00:13:58,639 to be the most dire. Mhmm. And that's 383 00:13:58,639 --> 00:13:59,840 a place where we get a little bit 384 00:13:59,840 --> 00:14:02,000 stuck sometimes. Right? We're kinda chicken little. The 385 00:14:02,000 --> 00:14:03,600 sky is falling. Let's talk about all the 386 00:14:03,600 --> 00:14:05,300 people that are gonna get hurt the most 387 00:14:06,194 --> 00:14:08,034 when in fact we really do need to 388 00:14:08,034 --> 00:14:11,315 have some unifying messaging there and also listen 389 00:14:11,315 --> 00:14:13,074 to each other in order to encourage more 390 00:14:13,074 --> 00:14:15,414 people to do it. Right. That takes time. 391 00:14:15,634 --> 00:14:16,134 Yeah. 392 00:14:16,514 --> 00:14:18,355 Yeah. And I I really like that the 393 00:14:18,355 --> 00:14:20,929 idea that your story doesn't have to be 394 00:14:20,929 --> 00:14:23,009 the most dire. Right? It is still your 395 00:14:23,009 --> 00:14:24,769 story, and it still has emotion. It still 396 00:14:24,769 --> 00:14:25,429 has human 397 00:14:25,970 --> 00:14:28,529 elements to it. And you need to bring 398 00:14:28,529 --> 00:14:30,769 that story no matter what it is. And 399 00:14:30,769 --> 00:14:33,315 it could be the caretaker of someone with 400 00:14:33,315 --> 00:14:35,554 hemophilia b. That is your story. That is 401 00:14:35,554 --> 00:14:36,295 a journey. 402 00:14:36,675 --> 00:14:39,095 That has its challenges. It has its triumphs. 403 00:14:39,315 --> 00:14:41,075 That's right. And Anakka could also be the 404 00:14:41,075 --> 00:14:43,475 patient who has the the same kind of, 405 00:14:43,475 --> 00:14:45,955 like, trajectory, you know, with with the triumphs 406 00:14:45,955 --> 00:14:46,774 and the challenges. 407 00:14:47,269 --> 00:14:49,850 And the more the listeners out there 408 00:14:50,230 --> 00:14:51,450 can share their story, 409 00:14:52,549 --> 00:14:54,889 the better off this community will be. And 410 00:14:54,950 --> 00:14:57,029 not just the hemophilia b community, but the 411 00:14:57,029 --> 00:14:58,090 rare disease community, 412 00:14:58,950 --> 00:15:01,590 who, you know, Medicare, Medicaid, and the Affordable 413 00:15:01,590 --> 00:15:02,174 Care Act 414 00:15:03,134 --> 00:15:03,875 have done 415 00:15:04,254 --> 00:15:07,154 great work to to help help these families, 416 00:15:07,774 --> 00:15:09,394 you know, get by and get through. 417 00:15:10,174 --> 00:15:12,254 So I so I guess, you know, wrapping 418 00:15:12,254 --> 00:15:14,495 up this conversation, one, did we leave anything 419 00:15:14,495 --> 00:15:16,350 out that we absolutely need to touch on? 420 00:15:16,429 --> 00:15:19,009 But two, I get just, like, maybe reiterate 421 00:15:19,470 --> 00:15:22,669 what gets you to work tomorrow knowing that, 422 00:15:23,149 --> 00:15:24,690 it feels like there's impending 423 00:15:25,230 --> 00:15:27,409 changes that could affect so many people. 424 00:15:28,509 --> 00:15:30,909 Two things I think are worth mentioning, Kai. 425 00:15:30,909 --> 00:15:31,889 One is that 426 00:15:32,654 --> 00:15:35,154 these changes are real and specific. 427 00:15:35,774 --> 00:15:39,075 We're talking about almost a thousand dollar increase 428 00:15:39,134 --> 00:15:42,095 in deductibles and cost sharing for anybody with 429 00:15:42,095 --> 00:15:43,475 employer sponsored coverage. 430 00:15:44,174 --> 00:15:46,610 We're talking about more paperwork and less time 431 00:15:46,610 --> 00:15:48,209 to enroll for people that are on the 432 00:15:48,209 --> 00:15:48,709 marketplace 433 00:15:49,250 --> 00:15:50,070 and in Medicaid. 434 00:15:51,009 --> 00:15:54,370 And we're expecting very large premium increases next 435 00:15:54,370 --> 00:15:58,690 year, 24% in Tennessee, 21% in Washington, 19% 436 00:15:58,690 --> 00:15:59,350 in Pennsylvania. 437 00:15:59,815 --> 00:16:01,735 These changes are real, and they are coming 438 00:16:01,735 --> 00:16:02,235 soon. 439 00:16:03,014 --> 00:16:03,514 Therefore, 440 00:16:05,254 --> 00:16:07,915 making a phone call, talking to a neighbor, 441 00:16:08,375 --> 00:16:11,175 sharing your story, no matter what that story 442 00:16:11,175 --> 00:16:12,634 is, is the everydayness 443 00:16:12,935 --> 00:16:13,595 of this. 444 00:16:14,379 --> 00:16:17,019 Because for example, in Medicaid, when we talk 445 00:16:17,019 --> 00:16:17,519 about 446 00:16:18,139 --> 00:16:19,740 what's going, what's going to happen and who's 447 00:16:19,740 --> 00:16:21,899 going to lose their coverage in Congress, they're 448 00:16:21,899 --> 00:16:24,139 talking about carve outs now. Oh, not people 449 00:16:24,139 --> 00:16:26,539 with cancer. Oh, we're going to handle rural 450 00:16:26,539 --> 00:16:28,539 hospitals in these areas. This is a sign 451 00:16:28,539 --> 00:16:30,514 that people are going to get hurt. We 452 00:16:30,514 --> 00:16:32,195 don't need to do carve outs. We need 453 00:16:32,195 --> 00:16:34,434 to show that this is everyone and share 454 00:16:34,434 --> 00:16:36,915 the everyday experience. I really encourage people to 455 00:16:36,915 --> 00:16:38,455 just take one small action 456 00:16:38,995 --> 00:16:40,615 today that feels doable. 457 00:16:41,235 --> 00:16:45,279 The switchboard is (202) 224-3121. 458 00:16:45,279 --> 00:16:46,960 You could call your member of congress if 459 00:16:46,960 --> 00:16:48,720 that feels easy to you. And if not, 460 00:16:48,720 --> 00:16:50,399 maybe a little bit something on Facebook or 461 00:16:50,399 --> 00:16:53,200 Instagram. Well said. And thank you, Allison, cofounder 462 00:16:53,200 --> 00:16:55,120 of Co Line, for being here today and 463 00:16:55,120 --> 00:16:57,360 breaking down such complex policy with clarity and 464 00:16:57,360 --> 00:16:57,860 heart. 465 00:16:58,184 --> 00:17:00,345 Allison, you shared a few trusted resources today, 466 00:17:00,345 --> 00:17:01,865 but I also want our listeners to know 467 00:17:01,865 --> 00:17:04,184 that the Coalition of Hemophilia B is proud 468 00:17:04,184 --> 00:17:06,025 to be part of something bigger. We are 469 00:17:06,025 --> 00:17:08,345 members of the Partnership to Protect Coverage, a 470 00:17:08,345 --> 00:17:10,984 powerful coalition of over 50 disease specific and 471 00:17:10,984 --> 00:17:12,204 rare disease organizations, 472 00:17:12,779 --> 00:17:15,019 working together to ensure that patients across the 473 00:17:15,019 --> 00:17:17,920 country have access to affordable, high quality care. 474 00:17:18,059 --> 00:17:20,460 This partnership strengthens our voice in Washington and 475 00:17:20,460 --> 00:17:22,460 beyond and is part of how we advocate 476 00:17:22,460 --> 00:17:24,700 on your behalf every single day. In fact, 477 00:17:24,700 --> 00:17:27,100 our CEO, Kim Phelan, first heard Allison speak 478 00:17:27,100 --> 00:17:28,240 through this very partnership 479 00:17:28,565 --> 00:17:30,325 and was so impressed by her insight and 480 00:17:30,325 --> 00:17:31,684 passion that we knew we had to bring 481 00:17:31,684 --> 00:17:33,224 her voice to Boundless b. 482 00:17:33,525 --> 00:17:35,924 As Allison so beautifully said, your voice, your 483 00:17:35,924 --> 00:17:38,244 story, and your action matter. We at the 484 00:17:38,244 --> 00:17:40,904 coalition will continue to keep you informed, supported, 485 00:17:41,045 --> 00:17:41,704 and empowered. 486 00:17:42,109 --> 00:17:44,190 Because when we speak up together, we are 487 00:17:44,190 --> 00:17:46,349 impossible to ignore. Thank you again, Allison, for 488 00:17:46,349 --> 00:17:48,670 your time. Thanks so much. This has been 489 00:17:48,670 --> 00:17:51,710 Boundless Bee, the Hemophilia Bee Podcast, the podcast 490 00:17:51,710 --> 00:17:53,630 standing with you from a family like yours, 491 00:17:53,630 --> 00:17:56,565 presented by the Coalition for Hemophilia Bee and 492 00:17:56,565 --> 00:17:59,204 in partnership with Balancing Life's Issues. Until next 493 00:17:59,204 --> 00:18:00,744 time everybody take care. 494 00:18:11,970 --> 00:18:14,049 This has been a production of Balancing Life's 495 00:18:14,049 --> 00:18:16,769 Issues produced by me, Kai. Follow along with 496 00:18:16,769 --> 00:18:20,529 other BLI produced shows at balancinglife'sissues.com. 497 00:18:20,529 --> 00:18:21,910 Got an idea for the show? 498 00:18:22,534 --> 00:18:25,174 Email me, Kai, at balancing life's issues dot 499 00:18:25,174 --> 00:18:27,255 com, and be sure to follow and subscribe 500 00:18:27,255 --> 00:18:29,515 to this show wherever you listen to podcasts. 501 00:18:29,894 --> 00:18:31,275 Anything else to add, Miles?