1 00:00:00,120 --> 00:00:06,320 Speaker 1: Hi everyone, I'm Katie Curic and this is next Question today, 2 00:00:06,440 --> 00:00:09,360 Speaker 1: part two of our Long COVID Deep Dive. If you 3 00:00:09,400 --> 00:00:12,120 Speaker 1: haven't listened to part one yet, you should start there. 4 00:00:12,480 --> 00:00:15,160 Speaker 1: It's right there in your feed. In part one, we 5 00:00:15,320 --> 00:00:18,040 Speaker 1: left off with the stories of Shamir L. Smith and 6 00:00:18,120 --> 00:00:23,440 Speaker 1: Deepest Sing Too long COVID patients whose symptoms and experiences 7 00:00:23,480 --> 00:00:27,080 Speaker 1: in their own bodies were being dismissed by doctors and 8 00:00:27,240 --> 00:00:31,760 Speaker 1: hospital staff. Often was told that I wasn't well in 9 00:00:31,840 --> 00:00:35,159 Speaker 1: my head, I was too anxious. I was starting to 10 00:00:35,200 --> 00:00:38,120 Speaker 1: believe that the providers who are telling you was psychosomatic 11 00:00:38,120 --> 00:00:43,440 Speaker 1: and it was anxiety driven. I truly felt like, Okay, well, 12 00:00:44,479 --> 00:00:51,360 Speaker 1: I'm having a mental break. Unfortunately, these experiences are not unique. 13 00:00:52,240 --> 00:00:54,920 Speaker 1: I think it's been an absolute nightmare for most people. 14 00:00:55,440 --> 00:00:59,760 Speaker 1: Diana Barron is the founder of Survivor Corps, a grassroots 15 00:01:00,160 --> 00:01:03,880 Speaker 1: COVID patient advocacy group that has shifted its focus to 16 00:01:04,080 --> 00:01:08,200 Speaker 1: long COVID. Survivor Core has about one hundred and eighty 17 00:01:08,319 --> 00:01:12,840 Speaker 1: thousand members, and Diana says she's heard these stories of 18 00:01:12,959 --> 00:01:16,880 Speaker 1: time and time again. It became in just like other 19 00:01:16,959 --> 00:01:21,679 Speaker 1: chronic diseases, almost a modern day diagnosis of female hysteria 20 00:01:21,840 --> 00:01:25,040 Speaker 1: where patients were going to doctors and being gas lit 21 00:01:25,600 --> 00:01:28,640 Speaker 1: and being told that they had anxiety when they were 22 00:01:28,680 --> 00:01:32,960 Speaker 1: actually having tachiccardia, which needs a cardiologist, not a psychologist. 23 00:01:33,520 --> 00:01:37,080 Speaker 1: And yes, people are anxious. I'm sorry. If you're not 24 00:01:37,200 --> 00:01:40,520 Speaker 1: anxious in today's day and age, then you're not paying attention. 25 00:01:41,120 --> 00:01:47,319 Speaker 1: But this isn't just anxiety. This is, you know, debilitating 26 00:01:47,600 --> 00:01:52,360 Speaker 1: physical distress. Most people think that they are losing their minds. 27 00:01:52,880 --> 00:01:56,880 Speaker 1: They might have survived, but they are dying a slow death. 28 00:01:58,120 --> 00:02:00,720 Speaker 1: People come in good faith to try to seek help. 29 00:02:01,280 --> 00:02:04,080 Speaker 1: They encounter a health care system that's still prepared to 30 00:02:04,200 --> 00:02:09,000 Speaker 1: help them again. Dr Harlan Crumholtz, a Yield cardiologist and 31 00:02:09,160 --> 00:02:13,320 Speaker 1: long COVID researcher. Without objective measures of the illness, it 32 00:02:13,440 --> 00:02:18,240 Speaker 1: becomes easy for professionals to dismiss them and to doubt 33 00:02:18,360 --> 00:02:22,000 Speaker 1: even their existence beyond in someone's mind. And when I 34 00:02:22,040 --> 00:02:23,960 Speaker 1: say that is it's sort of a lack of respect 35 00:02:23,960 --> 00:02:29,000 Speaker 1: for what people tell us. It's sort of uh skepticism 36 00:02:29,080 --> 00:02:32,080 Speaker 1: about people who are reporting these kind of symptoms. So 37 00:02:32,120 --> 00:02:33,760 Speaker 1: many of these people, when they interact with the health 38 00:02:33,760 --> 00:02:36,600 Speaker 1: care system, are seeing people who are who are skeptical 39 00:02:36,840 --> 00:02:40,639 Speaker 1: that this is real. It's real, but we don't understand 40 00:02:40,639 --> 00:02:42,360 Speaker 1: what it is. And when when things don't meet the 41 00:02:42,400 --> 00:02:45,720 Speaker 1: patterns that we're used to seeing. We're trained as pattern 42 00:02:45,760 --> 00:02:48,920 Speaker 1: recognition professionals, as doctors. I mean, that's how we diagnose 43 00:02:49,360 --> 00:02:52,840 Speaker 1: what's this pattern. And we're bringing together multiple pieces of information, 44 00:02:52,840 --> 00:02:54,600 Speaker 1: what you're telling us, what the lab tests are saying. 45 00:02:54,600 --> 00:02:57,120 Speaker 1: But when we lack the lab tests, we lack imaging tests, 46 00:02:57,120 --> 00:03:00,720 Speaker 1: we lack other measures of of what's going on. Then 47 00:03:00,720 --> 00:03:02,440 Speaker 1: when we're left with what people are telling us, and 48 00:03:02,520 --> 00:03:04,880 Speaker 1: right now with the health care system, its reaction to 49 00:03:04,919 --> 00:03:08,680 Speaker 1: that is to be dismissive largely, and so we need 50 00:03:08,720 --> 00:03:11,040 Speaker 1: to fight against that impulse and we need to figure 51 00:03:11,080 --> 00:03:13,959 Speaker 1: out quickly what can we do to really understand what's 52 00:03:14,000 --> 00:03:16,640 Speaker 1: going on. We have to trust people, we have to 53 00:03:16,680 --> 00:03:18,840 Speaker 1: listen to them intently, and we have to try to 54 00:03:18,880 --> 00:03:21,880 Speaker 1: appreciate what it is that they're going through and and 55 00:03:21,919 --> 00:03:24,880 Speaker 1: have be a call to action for us, not just 56 00:03:25,639 --> 00:03:30,960 Speaker 1: something to dismiss, because there there is a lot of suffering. Thankfully, 57 00:03:31,000 --> 00:03:36,320 Speaker 1: for me, last year May um which was also ironically 58 00:03:36,360 --> 00:03:39,760 Speaker 1: my birthday, UM, I got a wonderful chance, a marvelous 59 00:03:39,840 --> 00:03:42,680 Speaker 1: chance that I don't take for granted. Tremir struggle to 60 00:03:42,720 --> 00:03:46,040 Speaker 1: find help for more than a year, but her persistence 61 00:03:46,240 --> 00:03:50,480 Speaker 1: eventually paid off and I met a wonderful Dr Lauren A. 62 00:03:50,600 --> 00:03:55,160 Speaker 1: Bobbio who changed my life. She is a black woman, 63 00:03:55,200 --> 00:03:57,320 Speaker 1: a young black woman who's just starting out her medical 64 00:03:57,720 --> 00:04:01,200 Speaker 1: career and UM. She was the very first doctor that 65 00:04:01,280 --> 00:04:07,720 Speaker 1: I met who said, Shamir, I believe you and UM. 66 00:04:07,760 --> 00:04:10,560 Speaker 1: I still get emotional about it today because it meant 67 00:04:10,600 --> 00:04:13,320 Speaker 1: it meant so much for me UM and so much 68 00:04:13,360 --> 00:04:15,840 Speaker 1: to me UM. Not only did it mean that I 69 00:04:15,920 --> 00:04:18,920 Speaker 1: was going to be able to develop a healthy relationship 70 00:04:19,400 --> 00:04:21,920 Speaker 1: UM with a with a doctor, but it it meant 71 00:04:22,040 --> 00:04:25,359 Speaker 1: that she was actually taking notes. I could see her 72 00:04:25,360 --> 00:04:28,600 Speaker 1: as she was typing, listening to me, UM, typing notes 73 00:04:28,640 --> 00:04:31,760 Speaker 1: about my condition. She was the very first doctor who 74 00:04:31,800 --> 00:04:36,600 Speaker 1: wrote a letter, a very uh sound letter to address 75 00:04:36,640 --> 00:04:39,480 Speaker 1: to my my employer, to let them know that I 76 00:04:39,560 --> 00:04:42,039 Speaker 1: was simply unable to work. And here with the reasons 77 00:04:42,040 --> 00:04:46,080 Speaker 1: why I believe that her affirming me and validating my 78 00:04:46,200 --> 00:04:49,240 Speaker 1: condition is also the reason why I luckily have been 79 00:04:49,279 --> 00:04:53,080 Speaker 1: able to UM be accepted. My claims for disability have 80 00:04:53,200 --> 00:04:55,520 Speaker 1: been able to be accepted. Had I not met her, 81 00:04:55,600 --> 00:04:58,479 Speaker 1: had I not fought so hard to reach her and 82 00:04:58,520 --> 00:05:01,360 Speaker 1: to get a doctor like her, had I not fired 83 00:05:01,640 --> 00:05:03,720 Speaker 1: all of the other doctors that I had to get 84 00:05:03,760 --> 00:05:07,120 Speaker 1: to her, I may not be able to celebrate that today. 85 00:05:07,200 --> 00:05:11,040 Speaker 1: That's a that's a huge win to me after experiencing 86 00:05:11,080 --> 00:05:17,599 Speaker 1: such such devastation in my life. I fell ill in February, 87 00:05:17,960 --> 00:05:26,200 Speaker 1: and it wasn't until August twenty through tele medicine that 88 00:05:26,440 --> 00:05:30,040 Speaker 1: I found a provider who introduced me to the term 89 00:05:30,080 --> 00:05:35,119 Speaker 1: long color again. Deeple was just twenty eight years old 90 00:05:35,480 --> 00:05:39,400 Speaker 1: when she started seeking answers for her long COVID symptoms. 91 00:05:40,120 --> 00:05:44,560 Speaker 1: She listened to my symptoms. She ordered panels and tests, 92 00:05:46,160 --> 00:05:47,880 Speaker 1: and I had a follow up a point now with 93 00:05:47,920 --> 00:05:53,080 Speaker 1: her to go over the results, listening to the symptoms 94 00:05:53,080 --> 00:05:57,440 Speaker 1: I was having, looking at the blood work UH and 95 00:05:57,920 --> 00:06:01,320 Speaker 1: the antibody result, and also comparing this to what she 96 00:06:01,400 --> 00:06:05,359 Speaker 1: was seeing in other patients. She introduced me to this 97 00:06:05,520 --> 00:06:09,360 Speaker 1: term long collar and asked if i'd heard of it before. 98 00:06:09,920 --> 00:06:15,120 Speaker 1: I hadn't. She explained that some folks were experiencing lingering 99 00:06:15,720 --> 00:06:23,760 Speaker 1: problems from their COVID infection, and I had an inkling already. 100 00:06:23,800 --> 00:06:26,480 Speaker 1: That's what was happening, but it was good to finally 101 00:06:27,279 --> 00:06:30,800 Speaker 1: I feel like for the first time that year, I 102 00:06:30,839 --> 00:06:36,800 Speaker 1: wasn't losing my mind. When that doctor I think she's 103 00:06:36,839 --> 00:06:40,840 Speaker 1: located in Florida, who met with me through an app 104 00:06:40,920 --> 00:06:47,680 Speaker 1: on my phone introduced me to long Collar, I felt like, metaphorically, 105 00:06:47,680 --> 00:06:52,719 Speaker 1: of course, not literally, metaphorically, I could breathe again. My 106 00:06:52,800 --> 00:07:02,080 Speaker 1: medical journey and experiences are unacceptable. I have gotten more 107 00:07:02,440 --> 00:07:06,919 Speaker 1: acknowledgement validation from providers now than I did two years ago, 108 00:07:08,240 --> 00:07:11,640 Speaker 1: but nowhere near where it should be. You shouldn't walk 109 00:07:11,640 --> 00:07:17,320 Speaker 1: out with absolutely no answers, in tears, feeling more frustrated, 110 00:07:17,400 --> 00:07:21,680 Speaker 1: like you had yet another dead end. I still walk 111 00:07:21,800 --> 00:07:26,160 Speaker 1: into some provider appointments and walk back out with that experience. 112 00:07:27,240 --> 00:07:29,760 Speaker 1: On the other hand, I have had a couple of 113 00:07:30,000 --> 00:07:34,600 Speaker 1: acquaintments recently where at the very least provider acknowledged I 114 00:07:34,680 --> 00:07:36,640 Speaker 1: know what wonkin of it is and I'm so sorry 115 00:07:36,640 --> 00:07:42,240 Speaker 1: you're dealing with that. So validation. That's the progress that 116 00:07:42,240 --> 00:07:48,000 Speaker 1: I've made in two years, and if if we're calling 117 00:07:48,040 --> 00:07:52,960 Speaker 1: that progress, I think that indicates much larger problems at hand. 118 00:07:55,560 --> 00:07:58,080 Speaker 1: The very last time I was turned away from the hospital, 119 00:07:58,120 --> 00:08:01,280 Speaker 1: I said to myself, if this is happening to me, 120 00:08:01,440 --> 00:08:05,680 Speaker 1: this type of dismissal is happening to my students, students 121 00:08:05,680 --> 00:08:09,200 Speaker 1: who I know live in nuclear houses and families, Students 122 00:08:09,200 --> 00:08:13,280 Speaker 1: who are always around their grandparents, their aunties, their cousins, 123 00:08:13,840 --> 00:08:17,880 Speaker 1: Students who can't articulate their symptoms or why they feel 124 00:08:17,960 --> 00:08:20,520 Speaker 1: like that. And I did not want them to to 125 00:08:20,720 --> 00:08:25,040 Speaker 1: face what I faced. So I thought to myself every day, 126 00:08:25,080 --> 00:08:28,080 Speaker 1: if I wasn't going to die, and that must mean 127 00:08:28,080 --> 00:08:30,280 Speaker 1: that I'm supposed to do something to help myself and 128 00:08:30,320 --> 00:08:34,240 Speaker 1: someone else live. And I just slowly started to email 129 00:08:34,920 --> 00:08:39,040 Speaker 1: anybody who would listen. I started to email JOHNS. Hopkins 130 00:08:39,080 --> 00:08:44,040 Speaker 1: Patient Engagement Services. I emailed city councilmen and women in 131 00:08:44,080 --> 00:08:49,640 Speaker 1: Baltimore City, emailed state delegates. I even email doctors who 132 00:08:49,679 --> 00:08:54,600 Speaker 1: at Hopkins were writing h journals and writing uh small 133 00:08:54,880 --> 00:08:59,240 Speaker 1: articles about COVID because I wanted to know, um what 134 00:08:59,520 --> 00:09:02,160 Speaker 1: I could do to help treat myself and pass the 135 00:09:02,280 --> 00:09:07,200 Speaker 1: information onto other people. While Shamir is still unable to 136 00:09:07,240 --> 00:09:10,640 Speaker 1: return to the classroom to teach full time, she has 137 00:09:10,720 --> 00:09:15,679 Speaker 1: transformed her experience into patient advocacy. She's a member of 138 00:09:15,800 --> 00:09:18,600 Speaker 1: multiple long COVID groups and is on the board of 139 00:09:18,640 --> 00:09:23,840 Speaker 1: Body Politic, a COVID nineteen support collective. She offers advice 140 00:09:23,920 --> 00:09:27,440 Speaker 1: to fellow law COVID patients and is often invited to 141 00:09:27,520 --> 00:09:30,800 Speaker 1: speak on their behalf. I just want to make sure 142 00:09:30,840 --> 00:09:33,360 Speaker 1: that I saved myself, and I want to make sure 143 00:09:33,360 --> 00:09:36,920 Speaker 1: I save those other people in my community. And when 144 00:09:36,920 --> 00:09:39,160 Speaker 1: I say other people, I mean other black people who 145 00:09:39,200 --> 00:09:42,600 Speaker 1: are poor, who are disenfranchised, who don't have the same 146 00:09:42,600 --> 00:09:45,760 Speaker 1: health care access, and who don't have the same financial 147 00:09:45,800 --> 00:09:51,319 Speaker 1: means as other people. I testified before Congress on Thursday, 148 00:09:51,360 --> 00:09:54,840 Speaker 1: April two thousand twenty one, and the purpose of that 149 00:09:54,920 --> 00:09:59,640 Speaker 1: congressional hearing was to talk to researchers and doctors about COVID, 150 00:09:59,679 --> 00:10:04,319 Speaker 1: but to also hear about the patient experience. It's been 151 00:10:04,320 --> 00:10:08,199 Speaker 1: the generosity of my family and my friends and those 152 00:10:08,240 --> 00:10:11,200 Speaker 1: who support my advocacy that I was even able to 153 00:10:11,280 --> 00:10:14,240 Speaker 1: live for the past two years, and so I wanted 154 00:10:14,320 --> 00:10:17,960 Speaker 1: Congress to know how serious I was about my station 155 00:10:18,040 --> 00:10:22,080 Speaker 1: in life. I was very moved by the fact that 156 00:10:22,240 --> 00:10:26,120 Speaker 1: many of those congressional leaders admitted that they two new 157 00:10:26,160 --> 00:10:31,000 Speaker 1: people who experienced and were experiencing long COVID. However, I've 158 00:10:31,080 --> 00:10:36,160 Speaker 1: been very disappointed nearly a year later, because there hasn't 159 00:10:36,240 --> 00:10:40,800 Speaker 1: been much movement or action on the behalf of long 160 00:10:40,880 --> 00:10:45,000 Speaker 1: COVID patients. We acknowledged it and then we left it. 161 00:10:45,360 --> 00:10:48,120 Speaker 1: They are not very many people in power who are 162 00:10:48,160 --> 00:10:51,720 Speaker 1: standing up for us. What I have seen and what 163 00:10:51,800 --> 00:10:55,920 Speaker 1: I will continue to champion, is the fact that smaller groups, 164 00:10:56,559 --> 00:11:02,440 Speaker 1: smaller organizations, grass root organizations, have been at the helm 165 00:11:02,480 --> 00:11:06,040 Speaker 1: of informing us about long cod and body politic alone 166 00:11:06,600 --> 00:11:10,840 Speaker 1: has informed so many people with their platform. It's been 167 00:11:11,040 --> 00:11:13,760 Speaker 1: groups like m E Action, which is a group about 168 00:11:13,800 --> 00:11:17,280 Speaker 1: you know, UM M E and chronic fatigue syndrome and 169 00:11:17,640 --> 00:11:22,000 Speaker 1: um other chronic illness groups that have helped to inform 170 00:11:22,400 --> 00:11:26,400 Speaker 1: long COVID patients. It hasn't been many politicians. It hasn't 171 00:11:26,440 --> 00:11:30,760 Speaker 1: been our president, It hasn't been the people that we 172 00:11:31,040 --> 00:11:35,160 Speaker 1: entrust with that kind of power. It's been the smaller groups, 173 00:11:35,240 --> 00:11:39,120 Speaker 1: the the everyman, the average woman, the average man that 174 00:11:39,200 --> 00:11:42,400 Speaker 1: has reached out their hands to help us. And so 175 00:11:42,880 --> 00:11:46,000 Speaker 1: that's who have led us down this road of information. 176 00:11:46,360 --> 00:11:50,000 Speaker 1: It wasn't the people in power. When we come back, 177 00:11:52,960 --> 00:12:11,880 Speaker 1: I tracked down some of those people in power again. 178 00:12:12,040 --> 00:12:17,320 Speaker 1: Our long COVID cohort deepest Sing, Rebecca Hogan, Liza Fisher, 179 00:12:17,760 --> 00:12:23,079 Speaker 1: Jack Guest, Shamir L. Smith, and Janine Hayes as far 180 00:12:23,160 --> 00:12:28,640 Speaker 1: as with a long COVID community needs from the paris 181 00:12:28,720 --> 00:12:32,800 Speaker 1: that be in this in my opinion, First, we need 182 00:12:32,840 --> 00:12:37,040 Speaker 1: financial support. I've lost everything. We've gone through our savings. 183 00:12:37,080 --> 00:12:40,040 Speaker 1: We've whittled away everything. I used a lot of that 184 00:12:40,080 --> 00:12:44,000 Speaker 1: go funding money to pay for Cobra. That money has 185 00:12:44,080 --> 00:12:48,840 Speaker 1: run out. Is this a forever thing? How long am 186 00:12:48,840 --> 00:12:53,480 Speaker 1: I going to have the income that supports that? As 187 00:12:53,520 --> 00:12:56,800 Speaker 1: a teacher, I was saved ten to dollars a year 188 00:12:56,960 --> 00:12:59,200 Speaker 1: and I lost all of that in the first couple 189 00:12:59,200 --> 00:13:04,160 Speaker 1: of months of my inn Second is job protection. You 190 00:13:04,200 --> 00:13:10,520 Speaker 1: know we're still people. We if we had jobs previously. 191 00:13:11,120 --> 00:13:14,040 Speaker 1: We need to know that our jobs will still be 192 00:13:14,120 --> 00:13:18,720 Speaker 1: available to us. When we were checking, I worked UM 193 00:13:19,040 --> 00:13:21,320 Speaker 1: at one of the top management consulting firms I was. 194 00:13:21,480 --> 00:13:25,920 Speaker 1: I was an associate partner there. I never thought I'd 195 00:13:25,960 --> 00:13:29,480 Speaker 1: be out more than two weeks UM and now you know, 196 00:13:29,559 --> 00:13:33,320 Speaker 1: we're going on thirteen months and I have not stepped 197 00:13:33,320 --> 00:13:37,360 Speaker 1: foot in my classroom for almost two years. I went 198 00:13:37,400 --> 00:13:40,160 Speaker 1: to nursing school to help other people, but also to 199 00:13:40,200 --> 00:13:44,160 Speaker 1: give my family a different life, financial security. There was 200 00:13:44,200 --> 00:13:47,560 Speaker 1: a structure, it was good, it was good, and it 201 00:13:47,640 --> 00:13:53,320 Speaker 1: was all snatched from us. Third, it's communication. Now we 202 00:13:53,320 --> 00:13:59,360 Speaker 1: we're seeing these big vaccine campaigns. We know that communication 203 00:13:59,440 --> 00:14:03,000 Speaker 1: at a large scale candy set up and delivered upon 204 00:14:03,800 --> 00:14:08,160 Speaker 1: quickly and efficiently. Why are we not talking about long 205 00:14:08,200 --> 00:14:12,600 Speaker 1: COVID at that same level. That is completely unacceptable in 206 00:14:12,679 --> 00:14:19,160 Speaker 1: putting people in harm's way. There are people at our 207 00:14:19,280 --> 00:14:22,080 Speaker 1: scale don't know about long COVID. They don't or if 208 00:14:22,120 --> 00:14:25,440 Speaker 1: they have heard of it, they don't know exactly how 209 00:14:25,520 --> 00:14:30,640 Speaker 1: detrimental it can be. If the information isn't out there, 210 00:14:30,880 --> 00:14:34,040 Speaker 1: then you don't know when you're like lost in this situation. 211 00:14:34,920 --> 00:14:40,840 Speaker 1: There is not enough information, data statistics that capture the 212 00:14:40,920 --> 00:14:45,480 Speaker 1: amount of fipock women and families who have had long 213 00:14:45,560 --> 00:14:50,640 Speaker 1: COVID who are experiencing it. Now, how can I go 214 00:14:50,840 --> 00:14:55,240 Speaker 1: anywhere to inform anybody in my community about what to 215 00:14:55,320 --> 00:14:59,280 Speaker 1: look for, how to take care of themselves, mental health resources, 216 00:14:59,320 --> 00:15:02,880 Speaker 1: long COVID plants. If we don't know who's being affected, 217 00:15:04,280 --> 00:15:07,080 Speaker 1: it's like being a teacher with no lesson plan. If 218 00:15:07,080 --> 00:15:10,440 Speaker 1: I have no lesson plan, I can't teach. And everybody 219 00:15:10,680 --> 00:15:14,000 Speaker 1: here in this community, just like in other communities, deserve 220 00:15:14,120 --> 00:15:17,480 Speaker 1: the right to have a COVID and along COVID lesson plan. 221 00:15:18,880 --> 00:15:23,800 Speaker 1: We don't think about how difficult to navigate the health 222 00:15:23,840 --> 00:15:27,880 Speaker 1: care system is. Like I'm a nurse. I'm a nurse 223 00:15:28,600 --> 00:15:33,040 Speaker 1: with a genius like you, and I'm so I'm struggling. 224 00:15:33,080 --> 00:15:36,400 Speaker 1: I'm dying. I'm struggling so hard to navigate the health 225 00:15:36,440 --> 00:15:38,480 Speaker 1: care system. And I don't even know what I'm struggling 226 00:15:38,480 --> 00:15:40,440 Speaker 1: with because like I've got all these appointments and all 227 00:15:40,440 --> 00:15:44,960 Speaker 1: these doctors, nothing's happening. I don't know what's going on. 228 00:15:45,960 --> 00:15:50,480 Speaker 1: I don't know. It's like I'm the middleman. I'm the 229 00:15:50,600 --> 00:15:54,160 Speaker 1: one in the middle coordinating at all. What's the point 230 00:15:54,200 --> 00:15:56,560 Speaker 1: of that if I need fourteen specialists? Am I really 231 00:15:56,600 --> 00:16:01,600 Speaker 1: capable of being a middleman? Oh? This whole long COVID 232 00:16:02,200 --> 00:16:09,840 Speaker 1: journey has exposed some rather ugly troots about our medical 233 00:16:09,880 --> 00:16:19,480 Speaker 1: system for folks who have chronic conditions and have suffered 234 00:16:20,920 --> 00:16:29,880 Speaker 1: for decades in some cases, without attention, without acknowledgment. Now 235 00:16:29,920 --> 00:16:36,320 Speaker 1: we're dealing with something on a tremendously large scale. I 236 00:16:36,360 --> 00:16:41,880 Speaker 1: hope someone is taking note that the amount of people 237 00:16:42,040 --> 00:16:50,960 Speaker 1: being affected by this will have unforeseen circumstances unless something 238 00:16:51,080 --> 00:16:55,600 Speaker 1: is done help the people that are sick. We are 239 00:16:55,680 --> 00:17:03,120 Speaker 1: people who contribute to helping things run. We are people 240 00:17:03,200 --> 00:17:07,840 Speaker 1: with lives with families. Help us get better. That is 241 00:17:09,640 --> 00:17:15,520 Speaker 1: why these systems were supposedly in place to protect the people. 242 00:17:15,800 --> 00:17:23,960 Speaker 1: So protect the people. This community deserves some answers. So 243 00:17:24,000 --> 00:17:27,760 Speaker 1: I started calling elected officials to convey some of their 244 00:17:27,920 --> 00:17:32,960 Speaker 1: urgent needs. Are you I'm good. Congressman Don Buyer, a 245 00:17:33,040 --> 00:17:36,200 Speaker 1: Democrat from my home state of Virginia, was the first 246 00:17:36,240 --> 00:17:40,439 Speaker 1: to bring long COVID legislation to Congress. This was back 247 00:17:40,560 --> 00:17:46,000 Speaker 1: in December of He then reintroduced the same bill in 248 00:17:46,119 --> 00:17:52,399 Speaker 1: April of What motivated you to take the lead on 249 00:17:52,440 --> 00:17:56,760 Speaker 1: this issue. We were getting lots of feedback from people 250 00:17:56,840 --> 00:18:00,240 Speaker 1: that I represent in northern Virginia, and we are to 251 00:18:00,280 --> 00:18:06,240 Speaker 1: pay attention to it because, um, long COVID is so fuzzy, 252 00:18:06,320 --> 00:18:10,280 Speaker 1: I mean, two hundred different symptoms, really difficult to diagnose, 253 00:18:11,040 --> 00:18:14,000 Speaker 1: but very real. It reminded me a little bit about 254 00:18:14,080 --> 00:18:17,120 Speaker 1: where we were with flon disease twenty years ago, where 255 00:18:17,640 --> 00:18:20,360 Speaker 1: people say, well, that's in your head, um, but we 256 00:18:20,440 --> 00:18:22,720 Speaker 1: know this isn't in your head. And it was affecting 257 00:18:22,720 --> 00:18:25,840 Speaker 1: people and really bad ways, like they were getting turned 258 00:18:25,880 --> 00:18:29,160 Speaker 1: down for disability assurance UM, but at the same time 259 00:18:29,280 --> 00:18:31,440 Speaker 1: they couldn't really go to work, so then the Employment 260 00:18:31,440 --> 00:18:34,280 Speaker 1: Commission would say, well, we don't qualify for unemployment. So 261 00:18:34,680 --> 00:18:39,119 Speaker 1: people are getting a really bad economic situations. And we 262 00:18:39,240 --> 00:18:42,200 Speaker 1: thought this is also at a time when the country 263 00:18:42,280 --> 00:18:45,840 Speaker 1: had divided, this would not should not be a partisan issue. 264 00:18:46,280 --> 00:18:49,680 Speaker 1: The connersman, Jack Bergman, who is a Republican from Michigan, 265 00:18:49,720 --> 00:18:53,200 Speaker 1: has been my partner on most of these things, which 266 00:18:53,240 --> 00:18:55,080 Speaker 1: is great because that way we can go forward together. 267 00:18:56,119 --> 00:18:57,800 Speaker 1: I was going to say, I think a lot of 268 00:18:57,840 --> 00:19:02,440 Speaker 1: people in the COVID long COVID community are really frustrated 269 00:19:03,000 --> 00:19:06,880 Speaker 1: because they feel like, you know, where's our government, why 270 00:19:06,880 --> 00:19:11,280 Speaker 1: don't people care? And you know, the symptoms can be 271 00:19:11,560 --> 00:19:16,119 Speaker 1: just terribly debilitating. And I know that the Long Haulers Act, 272 00:19:16,160 --> 00:19:19,320 Speaker 1: your bill, hasn't really made any progress for almost a year, 273 00:19:19,720 --> 00:19:21,439 Speaker 1: so a lot of people are out there saying what 274 00:19:21,560 --> 00:19:25,600 Speaker 1: the heck is going on? Where is Congress and now? 275 00:19:25,680 --> 00:19:29,119 Speaker 1: And and part of it is I mean, it's sad, 276 00:19:29,160 --> 00:19:34,800 Speaker 1: but the COVID has greatly restricted our ability to get 277 00:19:34,800 --> 00:19:38,320 Speaker 1: things done. We had the state of the Union address, 278 00:19:38,480 --> 00:19:41,080 Speaker 1: and almost everyone was there without a mass because of 279 00:19:41,119 --> 00:19:43,760 Speaker 1: the new CDC guidelines. So I'm hoping we'll be able 280 00:19:43,760 --> 00:19:47,040 Speaker 1: to work once longer, harder weeks and get more things done. 281 00:19:47,800 --> 00:19:49,680 Speaker 1: And this Carly needs to be at at the top 282 00:19:49,680 --> 00:19:54,040 Speaker 1: of the list. Senator Kane introduced a new long COVID 283 00:19:54,080 --> 00:19:57,600 Speaker 1: build a Congress. It's called the Comprehensive Access to Resources 284 00:19:57,600 --> 00:20:02,199 Speaker 1: and Education for Long Covid Act. It's legislation designed to 285 00:20:02,200 --> 00:20:06,080 Speaker 1: help people living with long term COVID symptoms. Have you 286 00:20:06,160 --> 00:20:09,560 Speaker 1: had a chance to review this and and any thoughts 287 00:20:09,640 --> 00:20:13,240 Speaker 1: on that? Yeah? I think it's a great piece of legislation. 288 00:20:13,680 --> 00:20:16,399 Speaker 1: And what what Senator Kane's legislation does is build on 289 00:20:16,840 --> 00:20:20,879 Speaker 1: the different iterations of the last two years you've started with. 290 00:20:20,920 --> 00:20:25,280 Speaker 1: The very morning I interviewed Congressman Buyer, Senator Tim Kane, 291 00:20:25,680 --> 00:20:30,480 Speaker 1: who himself continues to experience long COVID symptoms, introduce the 292 00:20:30,640 --> 00:20:34,320 Speaker 1: Care Long Covid Act to Congress. Could this be the 293 00:20:34,359 --> 00:20:38,320 Speaker 1: boost of adrenaline the long COVID cause needs to get 294 00:20:38,359 --> 00:20:42,800 Speaker 1: federal help? Is it even enough? Hey Katie, Tim Kane here, 295 00:20:43,160 --> 00:20:45,840 Speaker 1: Hey Tim Kane here, how are you? I talked with 296 00:20:45,920 --> 00:20:49,400 Speaker 1: Senator Kane to find out. Tell us a little bit 297 00:20:49,440 --> 00:20:52,720 Speaker 1: about the Care Long COVID Act and how it's going 298 00:20:52,800 --> 00:20:55,760 Speaker 1: to help these you know, literally millions of people who 299 00:20:55,800 --> 00:21:00,280 Speaker 1: are experiencing this, Katie. The first bit of news good 300 00:21:00,320 --> 00:21:01,920 Speaker 1: news is we got a little bit of a head 301 00:21:01,960 --> 00:21:05,160 Speaker 1: started in an American rescue plan that we passed um 302 00:21:05,240 --> 00:21:08,720 Speaker 1: a year ago in Congress because we put funding into 303 00:21:08,760 --> 00:21:12,280 Speaker 1: that bill for the NIH to do research on long code. 304 00:21:12,320 --> 00:21:15,520 Speaker 1: So they've they've started the research. But what the what 305 00:21:15,560 --> 00:21:17,920 Speaker 1: the care skill would do? And I want to thank 306 00:21:18,000 --> 00:21:22,639 Speaker 1: my principal House sponsors, Don Buyer of Northern Virginia, and 307 00:21:22,720 --> 00:21:25,440 Speaker 1: my co sponsors and the Senator Tammy Duckworth and ed 308 00:21:25,520 --> 00:21:29,120 Speaker 1: Market Massachusetts in Illinois. What we will do is basically 309 00:21:29,119 --> 00:21:32,080 Speaker 1: four things with the bill. First, we will try to 310 00:21:32,119 --> 00:21:35,280 Speaker 1: really have a good federal database to catalog the kinds 311 00:21:35,320 --> 00:21:40,359 Speaker 1: of symptoms and complaints that people am our. Public data. 312 00:21:40,640 --> 00:21:44,159 Speaker 1: Public health data infrastructure in this country was sort of 313 00:21:44,200 --> 00:21:47,840 Speaker 1: week before COVID that actually hurt us in dealing with COVID. 314 00:21:47,880 --> 00:21:50,160 Speaker 1: We want to do a very good job of gathering 315 00:21:50,160 --> 00:21:53,400 Speaker 1: the data about patient experiences. That's number one. Number two 316 00:21:53,560 --> 00:21:57,280 Speaker 1: with that data and with other studies that that hospital 317 00:21:57,359 --> 00:21:59,720 Speaker 1: Sloan Sloan Kettering and New York is doing this, and 318 00:22:00,040 --> 00:22:04,800 Speaker 1: theres are two um we we want to um basically 319 00:22:05,200 --> 00:22:08,920 Speaker 1: do a deep research into causes and cures. And then 320 00:22:08,920 --> 00:22:10,840 Speaker 1: the last piece of the bill, sort of the third 321 00:22:10,840 --> 00:22:15,639 Speaker 1: piece is once we've catalog the concerns and co plaints 322 00:22:15,640 --> 00:22:18,080 Speaker 1: and we do research and the causes and cures, how 323 00:22:18,119 --> 00:22:21,960 Speaker 1: can we get that information out to patients and how 324 00:22:21,960 --> 00:22:25,600 Speaker 1: can we get that information out to providers, Because again, 325 00:22:25,640 --> 00:22:28,520 Speaker 1: we don't want somebody who is experiencing this to go 326 00:22:28,600 --> 00:22:32,879 Speaker 1: in to a provider and be told, oh, well, you know, um, 327 00:22:32,920 --> 00:22:35,600 Speaker 1: it might be anxiety, might be depression. It's been a 328 00:22:35,600 --> 00:22:37,760 Speaker 1: tough time a lot of people were doing with tough issues. 329 00:22:38,160 --> 00:22:40,800 Speaker 1: We we really want to communicate all these best practices 330 00:22:40,840 --> 00:22:44,320 Speaker 1: and the research to the provider community and also the patients. 331 00:22:44,920 --> 00:22:48,480 Speaker 1: The more information, maybe you reduce the uncertainty a little 332 00:22:48,520 --> 00:22:52,320 Speaker 1: bit and that might help people deal with this. You know, 333 00:22:52,359 --> 00:22:57,200 Speaker 1: if I was experiencing severe long COVID symptoms, I might 334 00:22:57,280 --> 00:22:59,320 Speaker 1: listen to this and want to pull my hair out 335 00:22:59,440 --> 00:23:02,600 Speaker 1: because it's sounds like we need to study and really 336 00:23:02,680 --> 00:23:06,320 Speaker 1: gather data, etcetera, etcetera. And I might be saying Hey, 337 00:23:06,480 --> 00:23:09,159 Speaker 1: I love you, Senator came, but I need relief now. 338 00:23:09,680 --> 00:23:13,440 Speaker 1: And this hasn't even happened. This bill hasn't passed, and 339 00:23:14,160 --> 00:23:20,000 Speaker 1: you know, I'm desperate. So, um, are there more immediate 340 00:23:20,080 --> 00:23:22,440 Speaker 1: things that can be done? A lot of the patients 341 00:23:22,480 --> 00:23:26,320 Speaker 1: we talked to said they really need financial help and 342 00:23:26,480 --> 00:23:29,320 Speaker 1: some kind of job security. And I don't know whether 343 00:23:29,400 --> 00:23:33,160 Speaker 1: there's uh something we could do with the Disabilities Act 344 00:23:33,280 --> 00:23:36,720 Speaker 1: that might help people who are in this situation. But 345 00:23:36,760 --> 00:23:41,840 Speaker 1: they have these mounting medical bills and they have to live, 346 00:23:41,920 --> 00:23:45,439 Speaker 1: and they're they're really in dire straits. And you know, 347 00:23:45,560 --> 00:23:47,560 Speaker 1: I'm not even one of them, but I feel for 348 00:23:47,600 --> 00:23:50,919 Speaker 1: them so much because what you're describing sounds like it 349 00:23:50,960 --> 00:23:53,560 Speaker 1: will be a long time coming. With all due respect 350 00:23:53,680 --> 00:23:58,600 Speaker 1: and even appreciating your the attention you're paying to the issue, 351 00:23:58,920 --> 00:24:01,720 Speaker 1: we know, I think that's a fair concern. Even the 352 00:24:01,760 --> 00:24:04,639 Speaker 1: dollars that'll be allocated a year ago to research. You 353 00:24:04,680 --> 00:24:07,439 Speaker 1: don't necessarily get an answer on a research question just 354 00:24:07,520 --> 00:24:10,199 Speaker 1: like that. You know, you really have to do it 355 00:24:10,240 --> 00:24:12,960 Speaker 1: and do it right in order to come up with answers. 356 00:24:13,000 --> 00:24:16,520 Speaker 1: But there are some there are some immediate term things 357 00:24:16,560 --> 00:24:19,199 Speaker 1: that I do think are important one is um the 358 00:24:19,200 --> 00:24:22,640 Speaker 1: Biden administration has already put out some guidance about long 359 00:24:22,720 --> 00:24:26,679 Speaker 1: COVID as being a kind of condition that needs to 360 00:24:26,760 --> 00:24:30,120 Speaker 1: be protected by the Americans with Disabilities Act. So, for example, 361 00:24:30,640 --> 00:24:33,400 Speaker 1: the Americans with Disabilities Act would suggest that in an 362 00:24:33,400 --> 00:24:37,520 Speaker 1: employment setting, an employer should offer you accommodations if you 363 00:24:37,600 --> 00:24:41,280 Speaker 1: have health related issues. Folks who have long COVID need 364 00:24:41,320 --> 00:24:44,520 Speaker 1: to be given accommodations at the workplace. And again we 365 00:24:44,560 --> 00:24:47,679 Speaker 1: may need to communicate that that that out to employers 366 00:24:47,760 --> 00:24:50,320 Speaker 1: and to employees about the way to ask for those 367 00:24:50,400 --> 00:24:53,240 Speaker 1: kinds of accommodations. But there is a legal protection right 368 00:24:53,280 --> 00:24:55,919 Speaker 1: now that I think would provide some help. And then 369 00:24:55,960 --> 00:24:58,200 Speaker 1: the second thing is on the on the medical side. 370 00:24:58,240 --> 00:25:03,000 Speaker 1: Even as we're doing big picture research, there there are 371 00:25:03,040 --> 00:25:07,399 Speaker 1: treatments for some of the long COVID conditions. So, for example, 372 00:25:07,960 --> 00:25:11,159 Speaker 1: somebody would hear me describe when I'm going through and 373 00:25:11,160 --> 00:25:15,800 Speaker 1: would say, well, that's a neuropathy, and often a peripheral neuropathy, 374 00:25:15,840 --> 00:25:18,720 Speaker 1: tingling in the fingers and toes. That's not that unusual. 375 00:25:19,160 --> 00:25:22,640 Speaker 1: It comes with follows diabetes and follows other things. There 376 00:25:22,640 --> 00:25:26,120 Speaker 1: are treatments for some of these conditions already that could 377 00:25:26,160 --> 00:25:30,520 Speaker 1: probably be adapted to my circumstances. Now, somebody with a 378 00:25:30,600 --> 00:25:34,400 Speaker 1: cardiac a racing heart rate or a regular heart heart rate, 379 00:25:34,840 --> 00:25:37,240 Speaker 1: you know that's there's gonna be a different treatment. But 380 00:25:37,240 --> 00:25:42,480 Speaker 1: but because um, after effects of viruses have been known 381 00:25:42,600 --> 00:25:46,560 Speaker 1: before other viruses, we might be able to adapt some 382 00:25:46,600 --> 00:25:49,920 Speaker 1: of those treatments for people's conditions right now. And that's 383 00:25:49,960 --> 00:25:51,320 Speaker 1: the kind of thing where you know, I'm not gonna 384 00:25:51,520 --> 00:25:54,080 Speaker 1: practice medicine, especially as a non doctor in a zoom 385 00:25:54,119 --> 00:25:56,200 Speaker 1: call with you, but as people could go on and 386 00:25:56,240 --> 00:25:59,080 Speaker 1: say I had COVID, here are the symptoms. Okay, even 387 00:25:59,119 --> 00:26:02,040 Speaker 1: separating apart from COVID the symptoms you describe, there are 388 00:26:02,200 --> 00:26:05,760 Speaker 1: treatments for some of those symptoms, and hopefully those might 389 00:26:06,280 --> 00:26:09,040 Speaker 1: provide some relief to people. And what about sort of 390 00:26:09,080 --> 00:26:13,680 Speaker 1: the financial assistance for people who have lost their jobs 391 00:26:13,760 --> 00:26:17,879 Speaker 1: and have mounting medical bills. What's being done to address that? 392 00:26:17,960 --> 00:26:21,400 Speaker 1: And is the government? Does the government have a responsibility 393 00:26:21,440 --> 00:26:26,280 Speaker 1: in that arena? Well, Katie, we ultimately do, because look, 394 00:26:26,440 --> 00:26:31,680 Speaker 1: it's not inconceivable that um, somebody with long COVID symptoms 395 00:26:31,800 --> 00:26:35,720 Speaker 1: might eventually qualify for Social Security disability, where there would 396 00:26:35,760 --> 00:26:39,720 Speaker 1: be a financial assistance for them. In fact, I haven't 397 00:26:39,720 --> 00:26:42,080 Speaker 1: done the research on this, but I'm sure, I am 398 00:26:42,119 --> 00:26:45,800 Speaker 1: absolutely sure that there's already Americans who have been filing 399 00:26:45,840 --> 00:26:49,080 Speaker 1: and going through the disability process because of their own 400 00:26:49,160 --> 00:26:51,920 Speaker 1: COVID and the after effect. Is there more that can 401 00:26:51,960 --> 00:26:55,160 Speaker 1: be done on helping people deal with the financial burden? 402 00:26:55,440 --> 00:26:57,439 Speaker 1: I'm sure there is. The bill that I induced, the 403 00:26:57,480 --> 00:27:00,200 Speaker 1: CARES bill is more about the research and therapy these 404 00:27:00,240 --> 00:27:03,600 Speaker 1: in information than that. But look, this is gonna have 405 00:27:03,840 --> 00:27:06,760 Speaker 1: a huge effect on our healthcare system going forward. I 406 00:27:07,000 --> 00:27:10,240 Speaker 1: I often say that on the labor force, by the way, 407 00:27:10,640 --> 00:27:14,000 Speaker 1: absolutely in a time when the unemployment rates already really 408 00:27:14,080 --> 00:27:17,800 Speaker 1: low and employers are like, where do I find a workforce? Um, 409 00:27:18,560 --> 00:27:21,920 Speaker 1: I've been giving this talk where I say there will 410 00:27:21,960 --> 00:27:24,880 Speaker 1: be a day when President Biden will say the national 411 00:27:24,920 --> 00:27:27,520 Speaker 1: emergency is over and COVID is in the rear view mirror. 412 00:27:27,600 --> 00:27:30,720 Speaker 1: But the two pieces that won't go away are long 413 00:27:30,840 --> 00:27:35,600 Speaker 1: COVID and the mental health aspects of an American public 414 00:27:35,640 --> 00:27:38,160 Speaker 1: that seems it's almost a million people have died already. 415 00:27:38,160 --> 00:27:41,400 Speaker 1: I mean, the death told to COVID is already over 416 00:27:41,480 --> 00:27:44,200 Speaker 1: nine d and fifty thousand, and then you add the 417 00:27:44,240 --> 00:27:47,840 Speaker 1: illness and job loss and business is closed. You stack 418 00:27:47,880 --> 00:27:49,480 Speaker 1: all that on top of it, and then there's this 419 00:27:49,600 --> 00:27:53,359 Speaker 1: mental health aspect of COVID that's gonna affect us long 420 00:27:53,400 --> 00:27:56,240 Speaker 1: after COVID is in the rear view mirror. Both of 421 00:27:56,240 --> 00:27:59,480 Speaker 1: those things, the physical aspects of long COVID in the 422 00:27:59,480 --> 00:28:02,639 Speaker 1: mental health consequences of the last few years are going 423 00:28:02,680 --> 00:28:06,640 Speaker 1: to demand innovation and resources from all levels of government. 424 00:28:07,000 --> 00:28:11,679 Speaker 1: Are you keeping in mind this prominent issue that I 425 00:28:11,720 --> 00:28:14,960 Speaker 1: think surfaced and really in a critical way in the 426 00:28:15,040 --> 00:28:19,320 Speaker 1: last couple of years about racial disparities and equities in 427 00:28:19,359 --> 00:28:23,440 Speaker 1: our health care system. I know that the racism described 428 00:28:23,480 --> 00:28:27,600 Speaker 1: by the patients we interviewed for this podcast caused severe 429 00:28:27,640 --> 00:28:34,199 Speaker 1: delays and accessing care, severe delays and accessing disability insurance. So, um, 430 00:28:34,240 --> 00:28:39,240 Speaker 1: are you keeping these things front and center, the institutional 431 00:28:39,320 --> 00:28:43,360 Speaker 1: and systematic racism that exists in our health care system 432 00:28:43,440 --> 00:28:46,840 Speaker 1: as you kind of craft this bill and think about 433 00:28:46,880 --> 00:28:50,160 Speaker 1: what's going to be in it. Um, The answer is yes, Katie, 434 00:28:50,160 --> 00:28:51,640 Speaker 1: and we need to. I mean, as you know that 435 00:28:52,000 --> 00:28:56,320 Speaker 1: who has who has disproportionately suffered from COVID, the people 436 00:28:56,320 --> 00:29:00,640 Speaker 1: who died from COVID have been disproportionately Latino and African American. 437 00:29:00,720 --> 00:29:03,280 Speaker 1: The people who've died of COVID have been disproportionate in 438 00:29:03,320 --> 00:29:06,600 Speaker 1: Latino and African American, and the people who've lost jobs 439 00:29:06,720 --> 00:29:11,040 Speaker 1: because of COVID are disproportionately Latino, African American women and 440 00:29:11,200 --> 00:29:14,520 Speaker 1: young people. So this is affect that everyone that hadn't 441 00:29:14,520 --> 00:29:17,680 Speaker 1: effected everybody equally. And so as we look at at 442 00:29:17,720 --> 00:29:22,200 Speaker 1: cures and and treatments and who's getting vaccinated who isn't, 443 00:29:22,200 --> 00:29:25,640 Speaker 1: we have to be really specific to deal with equity issues. 444 00:29:26,120 --> 00:29:28,960 Speaker 1: It's very common in medicine where and frankly where this 445 00:29:29,120 --> 00:29:32,640 Speaker 1: is probably demonstrated the most vividly as in issues of 446 00:29:32,640 --> 00:29:36,520 Speaker 1: the maternal mortality. Yes we did. We did two podcasts 447 00:29:36,560 --> 00:29:40,200 Speaker 1: on that, and and I'm sure people said exactly the 448 00:29:40,240 --> 00:29:43,200 Speaker 1: same thing to you. I reported to my physician that 449 00:29:43,360 --> 00:29:45,760 Speaker 1: this was the way I was feeling. And you know, 450 00:29:46,280 --> 00:29:50,000 Speaker 1: a white mom expecting mother reporting the same symptoms as 451 00:29:50,040 --> 00:29:53,480 Speaker 1: an African American expecting mother is more likely to get oh, 452 00:29:53,480 --> 00:29:56,360 Speaker 1: that's really a concern, how can we help? And then 453 00:29:56,160 --> 00:29:59,240 Speaker 1: the African American expecting mom might get kind of fobbed 454 00:29:59,240 --> 00:30:05,280 Speaker 1: off and if not completely dismissed, not taken as seriously um, 455 00:30:05,360 --> 00:30:09,840 Speaker 1: even in conditions that are very, very dire circumstances. So 456 00:30:09,840 --> 00:30:12,160 Speaker 1: when you see that happening in something like the maternal 457 00:30:12,200 --> 00:30:15,520 Speaker 1: mortality space, you can see the same thing somebody going 458 00:30:15,560 --> 00:30:17,560 Speaker 1: in and saying I had COVID six months gon, I'm 459 00:30:17,600 --> 00:30:21,160 Speaker 1: so deal with symptoms in the In the profession, they 460 00:30:21,200 --> 00:30:24,520 Speaker 1: may not be taken as seriously. Many reports that they're 461 00:30:24,520 --> 00:30:28,200 Speaker 1: not taking as seriously. So we have to as we're 462 00:30:28,240 --> 00:30:31,880 Speaker 1: you know, undertaking getting the patient experiences and doing the 463 00:30:31,920 --> 00:30:34,800 Speaker 1: research into causes and cures, and then getting information out, 464 00:30:35,200 --> 00:30:38,200 Speaker 1: we have to build sort of an equity component into 465 00:30:38,240 --> 00:30:43,560 Speaker 1: each of those three pieces, because you can't discount um 466 00:30:43,560 --> 00:30:45,920 Speaker 1: folks experiences and you know, and when you do and 467 00:30:45,960 --> 00:30:48,280 Speaker 1: I'm sure you heard this in the maternal mortality space. 468 00:30:48,560 --> 00:30:51,880 Speaker 1: If I report to you an experience I have and 469 00:30:51,920 --> 00:30:54,600 Speaker 1: then you discount it, okay, well then I'll be less 470 00:30:54,640 --> 00:30:56,640 Speaker 1: likely to report it to you the next time I'm in. 471 00:30:57,080 --> 00:31:00,560 Speaker 1: And it's sort of a vicious downward cycle where then 472 00:31:00,720 --> 00:31:02,880 Speaker 1: you don't have as the provider of the information you 473 00:31:02,880 --> 00:31:05,680 Speaker 1: need to make good decisions. There's not the trust that 474 00:31:06,360 --> 00:31:10,080 Speaker 1: is built up that allow that allows for communication, and 475 00:31:10,120 --> 00:31:12,960 Speaker 1: then health outcomes get a lot worse. So we have 476 00:31:13,120 --> 00:31:17,480 Speaker 1: to have in in both our research and our uh 477 00:31:17,560 --> 00:31:20,240 Speaker 1: in our communication. We have to build in an awareness 478 00:31:20,280 --> 00:31:24,200 Speaker 1: of these inequities, or else the health outcomes not only 479 00:31:24,200 --> 00:31:27,280 Speaker 1: are disparate, but they get even wider if we don't 480 00:31:27,320 --> 00:31:31,600 Speaker 1: solve this. Congressman Buyer has been working on at least 481 00:31:31,680 --> 00:31:36,600 Speaker 1: one of these systemic issues, collecting accurate data. In January 482 00:31:36,720 --> 00:31:42,000 Speaker 1: this year, Representatives Buyer and Ianna Pressley of Massachusetts demanded 483 00:31:42,080 --> 00:31:46,960 Speaker 1: better data from the CDC on long COVID's impact, specifically 484 00:31:47,240 --> 00:31:52,080 Speaker 1: on women and minorities. So has the CDC been receptive 485 00:31:52,440 --> 00:31:57,080 Speaker 1: to your requests, because it does seem that a really 486 00:31:57,360 --> 00:32:01,440 Speaker 1: fulsome research studies in order. It's a it's a yes 487 00:32:01,480 --> 00:32:04,760 Speaker 1: and no. He had serve. Yes, they've been friendly and open. 488 00:32:05,320 --> 00:32:08,360 Speaker 1: On the other hand, they're a little overwhelmed. Yeah, they're 489 00:32:08,360 --> 00:32:11,400 Speaker 1: trying to keep some very different research balls up in 490 00:32:11,400 --> 00:32:13,920 Speaker 1: the air. As you know, they've been criticized for not 491 00:32:14,040 --> 00:32:17,760 Speaker 1: being more forthcoming with some of their data, and of 492 00:32:17,800 --> 00:32:20,920 Speaker 1: course they have responded to Dr Lensky and others that 493 00:32:21,360 --> 00:32:24,840 Speaker 1: we don't want to get science out there that's not vetted, 494 00:32:25,040 --> 00:32:27,400 Speaker 1: that could only be half right, and have people making 495 00:32:27,440 --> 00:32:32,320 Speaker 1: their own decisions. UM for an overwhelmed agency. I think 496 00:32:32,360 --> 00:32:34,080 Speaker 1: they're trying to partner with this as best they can, 497 00:32:34,160 --> 00:32:36,320 Speaker 1: but we've got to keep the pressure up. Would you 498 00:32:36,400 --> 00:32:40,040 Speaker 1: like to take a moment to convince this community that 499 00:32:40,200 --> 00:32:43,600 Speaker 1: you are going to stay on it, Congressmen, that they 500 00:32:43,640 --> 00:32:46,960 Speaker 1: will not be forgotten, that you will do everything in 501 00:32:47,000 --> 00:32:52,040 Speaker 1: your power to ensure that their suffering is taken seriously 502 00:32:52,120 --> 00:32:56,040 Speaker 1: and the government can try to help. Katie, Yes, absolutely, 503 00:32:56,080 --> 00:32:59,080 Speaker 1: we We can't forget the long COVID folks who are 504 00:32:59,080 --> 00:33:01,960 Speaker 1: gonna be with us long after we stopped wearing mask 505 00:33:02,000 --> 00:33:05,520 Speaker 1: and everybody's back in school. Um, we need to continue 506 00:33:05,640 --> 00:33:11,200 Speaker 1: to try to make Congress Um a more effective, faster 507 00:33:11,280 --> 00:33:14,160 Speaker 1: acting body. I don't think our founding mothers and fathers 508 00:33:14,160 --> 00:33:16,480 Speaker 1: ever intended for it to be as glacial as it 509 00:33:16,560 --> 00:33:19,600 Speaker 1: is right now. And there are many really good ideas 510 00:33:19,600 --> 00:33:22,240 Speaker 1: about there about how to make it a more responsive 511 00:33:22,320 --> 00:33:25,720 Speaker 1: legislative body. But in the meantime, while it is what 512 00:33:25,800 --> 00:33:29,040 Speaker 1: it is, people like Senator Kane and I and Congressman 513 00:33:29,120 --> 00:33:31,960 Speaker 1: Jack Bergman, I under Pressley from s who's we need 514 00:33:32,000 --> 00:33:33,840 Speaker 1: to just keep the pressure on as hard as we can. 515 00:33:36,840 --> 00:33:40,640 Speaker 1: A lot of long COVID sufferers are going to be 516 00:33:40,800 --> 00:33:44,800 Speaker 1: listening to this podcast, Senator and closing, what would you 517 00:33:44,840 --> 00:33:47,920 Speaker 1: say to them? Well, what Katie, I mean? The first 518 00:33:47,920 --> 00:33:49,960 Speaker 1: thing I'll say is I believe you. And there's a 519 00:33:50,000 --> 00:33:53,240 Speaker 1: lot of us up here too, because we've had this experience. 520 00:33:53,720 --> 00:33:57,080 Speaker 1: We believe both your experience of COVID, but we believe 521 00:33:57,120 --> 00:34:02,640 Speaker 1: that these symptoms persist. Um. We are investing dollars now 522 00:34:02,680 --> 00:34:05,640 Speaker 1: for a year in research to figure out what to do. 523 00:34:06,240 --> 00:34:09,200 Speaker 1: And I would say maybe maybe the most powerful thing 524 00:34:09,239 --> 00:34:12,239 Speaker 1: I could say is if you if you hang with 525 00:34:12,360 --> 00:34:16,120 Speaker 1: us in this and you keep communicating, will not only 526 00:34:16,200 --> 00:34:19,400 Speaker 1: figure out the answer for people who have long COVID, 527 00:34:20,120 --> 00:34:22,480 Speaker 1: we were likely to figure out answers that will help 528 00:34:22,520 --> 00:34:26,439 Speaker 1: people who have after effects of line disease or other 529 00:34:26,560 --> 00:34:29,880 Speaker 1: viruses or the other pandemics. They're gonna be coming, you know, 530 00:34:29,960 --> 00:34:33,799 Speaker 1: down the highway in years to come. The study that 531 00:34:33,880 --> 00:34:37,439 Speaker 1: we can do with people who have long COVID will 532 00:34:37,480 --> 00:34:40,560 Speaker 1: not only help you, but they're gonna help a lot 533 00:34:40,560 --> 00:34:43,880 Speaker 1: of other people who are gonna have you know, who 534 00:34:44,000 --> 00:34:46,520 Speaker 1: either had COVID, are gonna have the next virus that comes. 535 00:34:46,680 --> 00:34:48,799 Speaker 1: And that's why it's really important that we do this, 536 00:34:48,840 --> 00:34:51,120 Speaker 1: and we do this together, we can help a lot 537 00:34:51,120 --> 00:34:53,960 Speaker 1: of people down the line if we if we stay focused. 538 00:34:55,000 --> 00:34:59,400 Speaker 1: That was Senator Tim Kaine and Congressman Don Buyer coming up. 539 00:34:59,680 --> 00:35:12,480 Speaker 1: We'll have some final thoughts from our guests. I have 540 00:35:12,600 --> 00:35:16,480 Speaker 1: concerns that people are losing hope. I have concerns that 541 00:35:16,520 --> 00:35:19,000 Speaker 1: people are being devastated financially and that we're not moving 542 00:35:19,080 --> 00:35:23,000 Speaker 1: quickly enough to to soften that blow through policies. People 543 00:35:23,000 --> 00:35:25,400 Speaker 1: are disabled and they don't know where to go to 544 00:35:25,440 --> 00:35:29,000 Speaker 1: get evaluated and to be able to get get the 545 00:35:29,040 --> 00:35:32,360 Speaker 1: kind of support that they need. When we talk about 546 00:35:32,400 --> 00:35:34,719 Speaker 1: getting used to all of this, what it means that 547 00:35:34,719 --> 00:35:38,760 Speaker 1: we're getting used to mass disabling event. We are getting 548 00:35:38,840 --> 00:35:43,800 Speaker 1: used to people in their twenties and thirties effectively having 549 00:35:43,960 --> 00:35:47,200 Speaker 1: their livelihoods shut off from them, people who cannot go 550 00:35:47,280 --> 00:35:51,000 Speaker 1: back to work, whose careers are being ruined, who have 551 00:35:51,160 --> 00:35:55,120 Speaker 1: to downsize their homes, selling their cars because they need 552 00:35:55,160 --> 00:35:59,520 Speaker 1: to pay for medications. We are not seeing the urgency. 553 00:36:00,600 --> 00:36:03,799 Speaker 1: The hardest part of all of this the uncertainty of 554 00:36:03,840 --> 00:36:07,640 Speaker 1: it all. The unknown, I mean, besides not knowing if 555 00:36:07,800 --> 00:36:11,680 Speaker 1: and when it will ever end, the unknown physically is 556 00:36:11,800 --> 00:36:14,400 Speaker 1: really feeling like there's no adult left in our family, 557 00:36:14,400 --> 00:36:18,000 Speaker 1: in our life to take care of us. The unknown emotionally, 558 00:36:18,320 --> 00:36:22,239 Speaker 1: it's really scary, the unknown of what my capacity is 559 00:36:22,280 --> 00:36:25,200 Speaker 1: going to be, Like how am I going to operate 560 00:36:25,239 --> 00:36:29,239 Speaker 1: in this world. Most doctors that I talked to, all 561 00:36:29,280 --> 00:36:32,799 Speaker 1: they can really tell you is that most people wake 562 00:36:32,880 --> 00:36:35,600 Speaker 1: up and they feel better now you know, twelve of 563 00:36:35,680 --> 00:36:39,400 Speaker 1: thirteen months in. It gets more into like is this 564 00:36:39,520 --> 00:36:42,520 Speaker 1: a forever thing? And nobody knows. Nobody can give me 565 00:36:42,520 --> 00:36:45,080 Speaker 1: an answer to it. I don't know how long we 566 00:36:45,080 --> 00:36:52,239 Speaker 1: could survive this. If this is often, what I try 567 00:36:52,280 --> 00:36:53,759 Speaker 1: to do is to tell them to be to be 568 00:36:53,840 --> 00:36:59,040 Speaker 1: brave again. Dr Harlan Crumholtz, to hold on because I 569 00:36:59,080 --> 00:37:02,160 Speaker 1: do believe that that it's a galvanizing moment where we 570 00:37:02,200 --> 00:37:05,440 Speaker 1: can come together and try to learn quickly and and 571 00:37:05,480 --> 00:37:07,840 Speaker 1: look what happened with the vaccines. I mean, the vaccines 572 00:37:07,880 --> 00:37:11,680 Speaker 1: did progress really rapidly, and now it's it's something short 573 00:37:11,719 --> 00:37:14,880 Speaker 1: of a miracle that that happened. I mean, but people 574 00:37:14,960 --> 00:37:17,879 Speaker 1: came together in a in a concerted effort and tried 575 00:37:17,920 --> 00:37:20,400 Speaker 1: to solve a problem. And what we need to do 576 00:37:20,440 --> 00:37:23,640 Speaker 1: is try to do this similarly for long COVID and 577 00:37:23,640 --> 00:37:26,120 Speaker 1: and again in this case, I think it's within partnership 578 00:37:26,160 --> 00:37:29,200 Speaker 1: with the patients. But but I tried to tell them 579 00:37:29,239 --> 00:37:32,200 Speaker 1: that look, this this could be around the corner that 580 00:37:32,239 --> 00:37:35,080 Speaker 1: we could be able to get insights that really cracked 581 00:37:35,080 --> 00:37:36,520 Speaker 1: the case and how help us figure out what to 582 00:37:36,560 --> 00:37:39,440 Speaker 1: make how to make their lives better. And so I 583 00:37:39,480 --> 00:37:42,319 Speaker 1: think that that should light a fire under us to 584 00:37:42,360 --> 00:37:43,879 Speaker 1: say that yes, we need to be able to have 585 00:37:43,960 --> 00:37:47,239 Speaker 1: some blood tests or some reflections of disturbances of the 586 00:37:47,239 --> 00:37:49,880 Speaker 1: physiology that are leading to we need to understand the 587 00:37:49,920 --> 00:37:52,959 Speaker 1: underlying mechanisms. But there's another piece to this is which 588 00:37:52,960 --> 00:37:55,040 Speaker 1: we have to trust people. We have to listen to 589 00:37:55,040 --> 00:37:57,520 Speaker 1: them intently, and we have to try to appreciate what 590 00:37:57,600 --> 00:38:01,160 Speaker 1: it is that they're going through and and be a 591 00:38:01,160 --> 00:38:04,600 Speaker 1: call to action for us, not just something to dismiss. 592 00:38:05,760 --> 00:38:08,080 Speaker 1: What we've learned is that the number one criteria that 593 00:38:08,160 --> 00:38:11,520 Speaker 1: any medical professional can have for you is a concern 594 00:38:11,640 --> 00:38:15,400 Speaker 1: about whether or not you make it. They have to 595 00:38:15,480 --> 00:38:19,280 Speaker 1: care whether or not you're going to be okay, because 596 00:38:19,400 --> 00:38:22,799 Speaker 1: if they don't, no amount of you know, of credentials, 597 00:38:22,800 --> 00:38:26,120 Speaker 1: no amount of of education or achievement is going to 598 00:38:26,160 --> 00:38:28,920 Speaker 1: help you. I know that we are all different and 599 00:38:28,920 --> 00:38:32,239 Speaker 1: our experiences are different. But I am so proud to 600 00:38:32,400 --> 00:38:37,280 Speaker 1: see how many long COVID patients with limited energy, limited money, 601 00:38:37,640 --> 00:38:42,800 Speaker 1: limited resources have banded together to make people pay attention. 602 00:38:43,360 --> 00:38:47,160 Speaker 1: Two years into this and if finally ready to start start, 603 00:38:47,320 --> 00:38:51,719 Speaker 1: I'm ready to talk about my story and experiences. I 604 00:38:51,880 --> 00:38:53,960 Speaker 1: just refused to accept that this is where I'm at. 605 00:38:54,440 --> 00:38:58,120 Speaker 1: So my goal is to be a nurse again, and 606 00:38:58,320 --> 00:39:01,319 Speaker 1: and I don't know what that's gonna look like. I 607 00:39:01,320 --> 00:39:04,880 Speaker 1: don't know if that means that I'm just gonna be 608 00:39:05,000 --> 00:39:07,080 Speaker 1: all better and cleared to go back to work on set, 609 00:39:07,520 --> 00:39:09,800 Speaker 1: or if I'll have to have some you know, combinations 610 00:39:09,840 --> 00:39:12,759 Speaker 1: and limitations. I don't know any of this. I don't 611 00:39:12,760 --> 00:39:14,560 Speaker 1: know what's next. I don't know what's out there. But 612 00:39:14,719 --> 00:39:17,160 Speaker 1: I'm not gonna just stay here doing nothing. I see 613 00:39:17,200 --> 00:39:22,279 Speaker 1: myself in the future climbing Manchu Pichi I have had 614 00:39:23,040 --> 00:39:24,759 Speaker 1: and when I was in the hospital, they have this 615 00:39:24,840 --> 00:39:31,120 Speaker 1: incentive sperometer, and I wanted to climb uh Montopu too, 616 00:39:31,600 --> 00:39:34,359 Speaker 1: and I took a video and I said, this is 617 00:39:34,400 --> 00:39:38,080 Speaker 1: my Montu p To And I continues to think of 618 00:39:38,120 --> 00:39:41,600 Speaker 1: this entire journey as my mountain and it goes up 619 00:39:41,600 --> 00:39:44,920 Speaker 1: and down, so I'm trying to still get to the 620 00:39:44,960 --> 00:39:49,160 Speaker 1: top and so along that way, I'd like to see 621 00:39:50,000 --> 00:39:56,680 Speaker 1: change happen policy wise as far as healthcare access and 622 00:39:56,719 --> 00:40:03,920 Speaker 1: affordability for h chronic illness and marginalized communities. And I'd 623 00:40:03,920 --> 00:40:09,960 Speaker 1: like to just be someone who can being pactful and 624 00:40:10,239 --> 00:40:17,120 Speaker 1: effectful or yeah, effect change and support. Knowing that there 625 00:40:17,160 --> 00:40:19,800 Speaker 1: are others that are suffering worse than I am. UM 626 00:40:20,000 --> 00:40:23,600 Speaker 1: just makes me want to be almost a voice and 627 00:40:23,640 --> 00:40:26,120 Speaker 1: an advocate in any way I can be UM for 628 00:40:26,200 --> 00:40:30,400 Speaker 1: better care, better standards, better healthcare UM in this country 629 00:40:30,400 --> 00:40:33,239 Speaker 1: to help us get through this. I'm proud of myself, 630 00:40:33,520 --> 00:40:36,040 Speaker 1: and so that's what gives me glimous of hope. I 631 00:40:36,160 --> 00:40:39,880 Speaker 1: do this so that people who look like me never 632 00:40:40,080 --> 00:40:43,200 Speaker 1: have to experience, as much as possible what I experienced. 633 00:40:43,840 --> 00:40:46,279 Speaker 1: As much as we're hearing people Will try Will Will 634 00:40:46,440 --> 00:40:49,560 Speaker 1: would prefer to talk about COVID in the past tense. 635 00:40:49,600 --> 00:40:51,840 Speaker 1: You know. It's the truth is it's not over just 636 00:40:51,920 --> 00:40:55,480 Speaker 1: because we're over it. What makes COVID such a perfect 637 00:40:55,480 --> 00:40:57,800 Speaker 1: teacher is the fact that it's not going to stop. 638 00:40:59,040 --> 00:41:07,840 Speaker 1: I hope someone with the power two change something is listening. 639 00:41:18,960 --> 00:41:22,160 Speaker 1: Thank you to all of our long COVID patients who 640 00:41:22,239 --> 00:41:25,960 Speaker 1: spent time and energy they didn't have sharing their stories. 641 00:41:26,600 --> 00:41:30,280 Speaker 1: You've heard from deepest saying Brian Mason and Janine Hayes, 642 00:41:30,840 --> 00:41:36,040 Speaker 1: Shamir L. Smith, Liza Fisher, Rebecca Hogan and Jack Guest, 643 00:41:36,760 --> 00:41:39,840 Speaker 1: and thank you as well to Dr Harlan Crumholz and 644 00:41:40,000 --> 00:41:45,280 Speaker 1: Dr Akiko Iwasaki of Yale University, and to Diana Barrant 645 00:41:45,360 --> 00:41:49,960 Speaker 1: of course of Survivor Core. If you're suffering from long 646 00:41:50,000 --> 00:41:53,080 Speaker 1: COVID symptoms and are looking for help, you can start 647 00:41:53,160 --> 00:41:57,600 Speaker 1: with support groups like Survivor Core, Embody Politic will have 648 00:41:57,760 --> 00:42:01,839 Speaker 1: links to those and others in our disc option. For 649 00:42:01,920 --> 00:42:04,600 Speaker 1: everyone out there listening, you can do your part to 650 00:42:04,640 --> 00:42:08,680 Speaker 1: get long COVID sufferers some care and attention. Just call 651 00:42:08,800 --> 00:42:13,040 Speaker 1: your local representative and ask them to urgently pass the 652 00:42:13,200 --> 00:42:19,480 Speaker 1: Care Long COVID Act. Thank you so much for listening everyone. 653 00:42:19,920 --> 00:42:22,080 Speaker 1: If you want to see and hear from some of 654 00:42:22,120 --> 00:42:25,120 Speaker 1: the long COVID patients we spoke to, head to my 655 00:42:25,200 --> 00:42:28,839 Speaker 1: YouTube channel for their stories, and a huge thank you 656 00:42:28,880 --> 00:42:33,000 Speaker 1: to Lauren Hansen on our team, our producer, who puts 657 00:42:33,080 --> 00:42:37,840 Speaker 1: so much time and energy into telling these stories. Thank you, Lauren. 658 00:42:45,880 --> 00:42:48,080 Speaker 1: Next Question with Katie Kurik is a production of My 659 00:42:48,239 --> 00:42:52,120 Speaker 1: Heart Media and Katie Kuric Media. The executive producers arm Me, 660 00:42:52,360 --> 00:42:56,840 Speaker 1: Katie Curic, and Courtney Litz. The supervising producer is Lauren Hansen. 661 00:42:57,200 --> 00:43:01,600 Speaker 1: Associate producers Derek Clements and a Trianna Fasio. The show 662 00:43:01,680 --> 00:43:05,400 Speaker 1: is edited and mixed by Derrick Clements. For more information 663 00:43:05,400 --> 00:43:08,640 Speaker 1: about today's episode, or to sign up for my morning newsletter, 664 00:43:08,680 --> 00:43:11,560 Speaker 1: wake Up Call, go to Katie correct dot com. You 665 00:43:11,560 --> 00:43:14,239 Speaker 1: can also find me at Katie Correct on Instagram and 666 00:43:14,400 --> 00:43:17,799 Speaker 1: all my social media channels. For more podcasts from I 667 00:43:17,920 --> 00:43:21,719 Speaker 1: Heart Radio, visit the I Heart Radio app, Apple Podcast, 668 00:43:22,080 --> 00:43:24,320 Speaker 1: or wherever you listen to your favorite shows,