WEBVTT - Long COVID deep dive, Part 2: ‘I hope someone with the power to change something is listening’ 0:00:00.120 --> 0:00:06.320 Hi everyone, I'm Katie Curic and this is next Question today, 0:00:06.440 --> 0:00:09.360 part two of our Long COVID Deep Dive. If you 0:00:09.400 --> 0:00:12.120 haven't listened to part one yet, you should start there. 0:00:12.480 --> 0:00:15.160 It's right there in your feed. In part one, we 0:00:15.320 --> 0:00:18.040 left off with the stories of Shamir L. Smith and 0:00:18.120 --> 0:00:23.440 Deepest Sing Too long COVID patients whose symptoms and experiences 0:00:23.480 --> 0:00:27.080 in their own bodies were being dismissed by doctors and 0:00:27.240 --> 0:00:31.760 hospital staff. Often was told that I wasn't well in 0:00:31.840 --> 0:00:35.159 my head, I was too anxious. I was starting to 0:00:35.200 --> 0:00:38.120 believe that the providers who are telling you was psychosomatic 0:00:38.120 --> 0:00:43.440 and it was anxiety driven. I truly felt like, Okay, well, 0:00:44.479 --> 0:00:51.360 I'm having a mental break. Unfortunately, these experiences are not unique. 0:00:52.240 --> 0:00:54.920 I think it's been an absolute nightmare for most people. 0:00:55.440 --> 0:00:59.760 Diana Barron is the founder of Survivor Corps, a grassroots 0:01:00.160 --> 0:01:03.880 COVID patient advocacy group that has shifted its focus to 0:01:04.080 --> 0:01:08.200 long COVID. Survivor Core has about one hundred and eighty 0:01:08.319 --> 0:01:12.840 thousand members, and Diana says she's heard these stories of 0:01:12.959 --> 0:01:16.880 time and time again. It became in just like other 0:01:16.959 --> 0:01:21.679 chronic diseases, almost a modern day diagnosis of female hysteria 0:01:21.840 --> 0:01:25.040 where patients were going to doctors and being gas lit 0:01:25.600 --> 0:01:28.640 and being told that they had anxiety when they were 0:01:28.680 --> 0:01:32.960 actually having tachiccardia, which needs a cardiologist, not a psychologist. 0:01:33.520 --> 0:01:37.080 And yes, people are anxious. I'm sorry. If you're not 0:01:37.200 --> 0:01:40.520 anxious in today's day and age, then you're not paying attention. 0:01:41.120 --> 0:01:47.319 But this isn't just anxiety. This is, you know, debilitating 0:01:47.600 --> 0:01:52.360 physical distress. Most people think that they are losing their minds. 0:01:52.880 --> 0:01:56.880 They might have survived, but they are dying a slow death. 0:01:58.120 --> 0:02:00.720 People come in good faith to try to seek help. 0:02:01.280 --> 0:02:04.080 They encounter a health care system that's still prepared to 0:02:04.200 --> 0:02:09.000 help them again. Dr Harlan Crumholtz, a Yield cardiologist and 0:02:09.160 --> 0:02:13.320 long COVID researcher. Without objective measures of the illness, it 0:02:13.440 --> 0:02:18.240 becomes easy for professionals to dismiss them and to doubt 0:02:18.360 --> 0:02:22.000 even their existence beyond in someone's mind. And when I 0:02:22.040 --> 0:02:23.960 say that is it's sort of a lack of respect 0:02:23.960 --> 0:02:29.000 for what people tell us. It's sort of uh skepticism 0:02:29.080 --> 0:02:32.080 about people who are reporting these kind of symptoms. So 0:02:32.120 --> 0:02:33.760 many of these people, when they interact with the health 0:02:33.760 --> 0:02:36.600 care system, are seeing people who are who are skeptical 0:02:36.840 --> 0:02:40.639 that this is real. It's real, but we don't understand 0:02:40.639 --> 0:02:42.360 what it is. And when when things don't meet the 0:02:42.400 --> 0:02:45.720 patterns that we're used to seeing. We're trained as pattern 0:02:45.760 --> 0:02:48.920 recognition professionals, as doctors. I mean, that's how we diagnose 0:02:49.360 --> 0:02:52.840 what's this pattern. And we're bringing together multiple pieces of information, 0:02:52.840 --> 0:02:54.600 what you're telling us, what the lab tests are saying. 0:02:54.600 --> 0:02:57.120 But when we lack the lab tests, we lack imaging tests, 0:02:57.120 --> 0:03:00.720 we lack other measures of of what's going on. Then 0:03:00.720 --> 0:03:02.440 when we're left with what people are telling us, and 0:03:02.520 --> 0:03:04.880 right now with the health care system, its reaction to 0:03:04.919 --> 0:03:08.680 that is to be dismissive largely, and so we need 0:03:08.720 --> 0:03:11.040 to fight against that impulse and we need to figure 0:03:11.080 --> 0:03:13.959 out quickly what can we do to really understand what's 0:03:14.000 --> 0:03:16.640 going on. We have to trust people, we have to 0:03:16.680 --> 0:03:18.840 listen to them intently, and we have to try to 0:03:18.880 --> 0:03:21.880 appreciate what it is that they're going through and and 0:03:21.919 --> 0:03:24.880 have be a call to action for us, not just 0:03:25.639 --> 0:03:30.960 something to dismiss, because there there is a lot of suffering. Thankfully, 0:03:31.000 --> 0:03:36.320 for me, last year May um which was also ironically 0:03:36.360 --> 0:03:39.760 my birthday, UM, I got a wonderful chance, a marvelous 0:03:39.840 --> 0:03:42.680 chance that I don't take for granted. Tremir struggle to 0:03:42.720 --> 0:03:46.040 find help for more than a year, but her persistence 0:03:46.240 --> 0:03:50.480 eventually paid off and I met a wonderful Dr Lauren A. 0:03:50.600 --> 0:03:55.160 Bobbio who changed my life. She is a black woman, 0:03:55.200 --> 0:03:57.320 a young black woman who's just starting out her medical 0:03:57.720 --> 0:04:01.200 career and UM. She was the very first doctor that 0:04:01.280 --> 0:04:07.720 I met who said, Shamir, I believe you and UM. 0:04:07.760 --> 0:04:10.560 I still get emotional about it today because it meant 0:04:10.600 --> 0:04:13.320 it meant so much for me UM and so much 0:04:13.360 --> 0:04:15.840 to me UM. Not only did it mean that I 0:04:15.920 --> 0:04:18.920 was going to be able to develop a healthy relationship 0:04:19.400 --> 0:04:21.920 UM with a with a doctor, but it it meant 0:04:22.040 --> 0:04:25.359 that she was actually taking notes. I could see her 0:04:25.360 --> 0:04:28.600 as she was typing, listening to me, UM, typing notes 0:04:28.640 --> 0:04:31.760 about my condition. She was the very first doctor who 0:04:31.800 --> 0:04:36.600 wrote a letter, a very uh sound letter to address 0:04:36.640 --> 0:04:39.480 to my my employer, to let them know that I 0:04:39.560 --> 0:04:42.039 was simply unable to work. And here with the reasons 0:04:42.040 --> 0:04:46.080 why I believe that her affirming me and validating my 0:04:46.200 --> 0:04:49.240 condition is also the reason why I luckily have been 0:04:49.279 --> 0:04:53.080 able to UM be accepted. My claims for disability have 0:04:53.200 --> 0:04:55.520 been able to be accepted. Had I not met her, 0:04:55.600 --> 0:04:58.479 had I not fought so hard to reach her and 0:04:58.520 --> 0:05:01.360 to get a doctor like her, had I not fired 0:05:01.640 --> 0:05:03.720 all of the other doctors that I had to get 0:05:03.760 --> 0:05:07.120 to her, I may not be able to celebrate that today. 0:05:07.200 --> 0:05:11.040 That's a that's a huge win to me after experiencing 0:05:11.080 --> 0:05:17.599 such such devastation in my life. I fell ill in February, 0:05:17.960 --> 0:05:26.200 and it wasn't until August twenty through tele medicine that 0:05:26.440 --> 0:05:30.040 I found a provider who introduced me to the term 0:05:30.080 --> 0:05:35.119 long color again. Deeple was just twenty eight years old 0:05:35.480 --> 0:05:39.400 when she started seeking answers for her long COVID symptoms. 0:05:40.120 --> 0:05:44.560 She listened to my symptoms. She ordered panels and tests, 0:05:46.160 --> 0:05:47.880 and I had a follow up a point now with 0:05:47.920 --> 0:05:53.080 her to go over the results, listening to the symptoms 0:05:53.080 --> 0:05:57.440 I was having, looking at the blood work UH and 0:05:57.920 --> 0:06:01.320 the antibody result, and also comparing this to what she 0:06:01.400 --> 0:06:05.359 was seeing in other patients. She introduced me to this 0:06:05.520 --> 0:06:09.360 term long collar and asked if i'd heard of it before. 0:06:09.920 --> 0:06:15.120 I hadn't. She explained that some folks were experiencing lingering 0:06:15.720 --> 0:06:23.760 problems from their COVID infection, and I had an inkling already. 0:06:23.800 --> 0:06:26.480 That's what was happening, but it was good to finally 0:06:27.279 --> 0:06:30.800 I feel like for the first time that year, I 0:06:30.839 --> 0:06:36.800 wasn't losing my mind. When that doctor I think she's 0:06:36.839 --> 0:06:40.840 located in Florida, who met with me through an app 0:06:40.920 --> 0:06:47.680 on my phone introduced me to long Collar, I felt like, metaphorically, 0:06:47.680 --> 0:06:52.719 of course, not literally, metaphorically, I could breathe again. My 0:06:52.800 --> 0:07:02.080 medical journey and experiences are unacceptable. I have gotten more 0:07:02.440 --> 0:07:06.919 acknowledgement validation from providers now than I did two years ago, 0:07:08.240 --> 0:07:11.640 but nowhere near where it should be. You shouldn't walk 0:07:11.640 --> 0:07:17.320 out with absolutely no answers, in tears, feeling more frustrated, 0:07:17.400 --> 0:07:21.680 like you had yet another dead end. I still walk 0:07:21.800 --> 0:07:26.160 into some provider appointments and walk back out with that experience. 0:07:27.240 --> 0:07:29.760 On the other hand, I have had a couple of 0:07:30.000 --> 0:07:34.600 acquaintments recently where at the very least provider acknowledged I 0:07:34.680 --> 0:07:36.640 know what wonkin of it is and I'm so sorry 0:07:36.640 --> 0:07:42.240 you're dealing with that. So validation. That's the progress that 0:07:42.240 --> 0:07:48.000 I've made in two years, and if if we're calling 0:07:48.040 --> 0:07:52.960 that progress, I think that indicates much larger problems at hand. 0:07:55.560 --> 0:07:58.080 The very last time I was turned away from the hospital, 0:07:58.120 --> 0:08:01.280 I said to myself, if this is happening to me, 0:08:01.440 --> 0:08:05.680 this type of dismissal is happening to my students, students 0:08:05.680 --> 0:08:09.200 who I know live in nuclear houses and families, Students 0:08:09.200 --> 0:08:13.280 who are always around their grandparents, their aunties, their cousins, 0:08:13.840 --> 0:08:17.880 Students who can't articulate their symptoms or why they feel 0:08:17.960 --> 0:08:20.520 like that. And I did not want them to to 0:08:20.720 --> 0:08:25.040 face what I faced. So I thought to myself every day, 0:08:25.080 --> 0:08:28.080 if I wasn't going to die, and that must mean 0:08:28.080 --> 0:08:30.280 that I'm supposed to do something to help myself and 0:08:30.320 --> 0:08:34.240 someone else live. And I just slowly started to email 0:08:34.920 --> 0:08:39.040 anybody who would listen. I started to email JOHNS. Hopkins 0:08:39.080 --> 0:08:44.040 Patient Engagement Services. I emailed city councilmen and women in 0:08:44.080 --> 0:08:49.640 Baltimore City, emailed state delegates. I even email doctors who 0:08:49.679 --> 0:08:54.600 at Hopkins were writing h journals and writing uh small 0:08:54.880 --> 0:08:59.240 articles about COVID because I wanted to know, um what 0:08:59.520 --> 0:09:02.160 I could do to help treat myself and pass the 0:09:02.280 --> 0:09:07.200 information onto other people. While Shamir is still unable to 0:09:07.240 --> 0:09:10.640 return to the classroom to teach full time, she has 0:09:10.720 --> 0:09:15.679 transformed her experience into patient advocacy. She's a member of 0:09:15.800 --> 0:09:18.600 multiple long COVID groups and is on the board of 0:09:18.640 --> 0:09:23.840 Body Politic, a COVID nineteen support collective. She offers advice 0:09:23.920 --> 0:09:27.440 to fellow law COVID patients and is often invited to 0:09:27.520 --> 0:09:30.800 speak on their behalf. I just want to make sure 0:09:30.840 --> 0:09:33.360 that I saved myself, and I want to make sure 0:09:33.360 --> 0:09:36.920 I save those other people in my community. And when 0:09:36.920 --> 0:09:39.160 I say other people, I mean other black people who 0:09:39.200 --> 0:09:42.600 are poor, who are disenfranchised, who don't have the same 0:09:42.600 --> 0:09:45.760 health care access, and who don't have the same financial 0:09:45.800 --> 0:09:51.319 means as other people. I testified before Congress on Thursday, 0:09:51.360 --> 0:09:54.840 April two thousand twenty one, and the purpose of that 0:09:54.920 --> 0:09:59.640 congressional hearing was to talk to researchers and doctors about COVID, 0:09:59.679 --> 0:10:04.319 but to also hear about the patient experience. It's been 0:10:04.320 --> 0:10:08.199 the generosity of my family and my friends and those 0:10:08.240 --> 0:10:11.200 who support my advocacy that I was even able to 0:10:11.280 --> 0:10:14.240 live for the past two years, and so I wanted 0:10:14.320 --> 0:10:17.960 Congress to know how serious I was about my station 0:10:18.040 --> 0:10:22.080 in life. I was very moved by the fact that 0:10:22.240 --> 0:10:26.120 many of those congressional leaders admitted that they two new 0:10:26.160 --> 0:10:31.000 people who experienced and were experiencing long COVID. However, I've 0:10:31.080 --> 0:10:36.160 been very disappointed nearly a year later, because there hasn't 0:10:36.240 --> 0:10:40.800 been much movement or action on the behalf of long 0:10:40.880 --> 0:10:45.000 COVID patients. We acknowledged it and then we left it. 0:10:45.360 --> 0:10:48.120 They are not very many people in power who are 0:10:48.160 --> 0:10:51.720 standing up for us. What I have seen and what 0:10:51.800 --> 0:10:55.920 I will continue to champion, is the fact that smaller groups, 0:10:56.559 --> 0:11:02.440 smaller organizations, grass root organizations, have been at the helm 0:11:02.480 --> 0:11:06.040 of informing us about long cod and body politic alone 0:11:06.600 --> 0:11:10.840 has informed so many people with their platform. It's been 0:11:11.040 --> 0:11:13.760 groups like m E Action, which is a group about 0:11:13.800 --> 0:11:17.280 you know, UM M E and chronic fatigue syndrome and 0:11:17.640 --> 0:11:22.000 um other chronic illness groups that have helped to inform 0:11:22.400 --> 0:11:26.400 long COVID patients. It hasn't been many politicians. It hasn't 0:11:26.440 --> 0:11:30.760 been our president, It hasn't been the people that we 0:11:31.040 --> 0:11:35.160 entrust with that kind of power. It's been the smaller groups, 0:11:35.240 --> 0:11:39.120 the the everyman, the average woman, the average man that 0:11:39.200 --> 0:11:42.400 has reached out their hands to help us. And so 0:11:42.880 --> 0:11:46.000 that's who have led us down this road of information. 0:11:46.360 --> 0:11:50.000 It wasn't the people in power. When we come back, 0:11:52.960 --> 0:12:11.880 I tracked down some of those people in power again. 0:12:12.040 --> 0:12:17.320 Our long COVID cohort deepest Sing, Rebecca Hogan, Liza Fisher, 0:12:17.760 --> 0:12:23.079 Jack Guest, Shamir L. Smith, and Janine Hayes as far 0:12:23.160 --> 0:12:28.640 as with a long COVID community needs from the paris 0:12:28.720 --> 0:12:32.800 that be in this in my opinion, First, we need 0:12:32.840 --> 0:12:37.040 financial support. I've lost everything. We've gone through our savings. 0:12:37.080 --> 0:12:40.040 We've whittled away everything. I used a lot of that 0:12:40.080 --> 0:12:44.000 go funding money to pay for Cobra. That money has 0:12:44.080 --> 0:12:48.840 run out. Is this a forever thing? How long am 0:12:48.840 --> 0:12:53.480 I going to have the income that supports that? As 0:12:53.520 --> 0:12:56.800 a teacher, I was saved ten to dollars a year 0:12:56.960 --> 0:12:59.200 and I lost all of that in the first couple 0:12:59.200 --> 0:13:04.160 of months of my inn Second is job protection. You 0:13:04.200 --> 0:13:10.520 know we're still people. We if we had jobs previously. 0:13:11.120 --> 0:13:14.040 We need to know that our jobs will still be 0:13:14.120 --> 0:13:18.720 available to us. When we were checking, I worked UM 0:13:19.040 --> 0:13:21.320 at one of the top management consulting firms I was. 0:13:21.480 --> 0:13:25.920 I was an associate partner there. I never thought I'd 0:13:25.960 --> 0:13:29.480 be out more than two weeks UM and now you know, 0:13:29.559 --> 0:13:33.320 we're going on thirteen months and I have not stepped 0:13:33.320 --> 0:13:37.360 foot in my classroom for almost two years. I went 0:13:37.400 --> 0:13:40.160 to nursing school to help other people, but also to 0:13:40.200 --> 0:13:44.160 give my family a different life, financial security. There was 0:13:44.200 --> 0:13:47.560 a structure, it was good, it was good, and it 0:13:47.640 --> 0:13:53.320 was all snatched from us. Third, it's communication. Now we 0:13:53.320 --> 0:13:59.360 we're seeing these big vaccine campaigns. We know that communication 0:13:59.440 --> 0:14:03.000 at a large scale candy set up and delivered upon 0:14:03.800 --> 0:14:08.160 quickly and efficiently. Why are we not talking about long 0:14:08.200 --> 0:14:12.600 COVID at that same level. That is completely unacceptable in 0:14:12.679 --> 0:14:19.160 putting people in harm's way. There are people at our 0:14:19.280 --> 0:14:22.080 scale don't know about long COVID. They don't or if 0:14:22.120 --> 0:14:25.440 they have heard of it, they don't know exactly how 0:14:25.520 --> 0:14:30.640 detrimental it can be. If the information isn't out there, 0:14:30.880 --> 0:14:34.040 then you don't know when you're like lost in this situation. 0:14:34.920 --> 0:14:40.840 There is not enough information, data statistics that capture the 0:14:40.920 --> 0:14:45.480 amount of fipock women and families who have had long 0:14:45.560 --> 0:14:50.640 COVID who are experiencing it. Now, how can I go 0:14:50.840 --> 0:14:55.240 anywhere to inform anybody in my community about what to 0:14:55.320 --> 0:14:59.280 look for, how to take care of themselves, mental health resources, 0:14:59.320 --> 0:15:02.880 long COVID plants. If we don't know who's being affected, 0:15:04.280 --> 0:15:07.080 it's like being a teacher with no lesson plan. If 0:15:07.080 --> 0:15:10.440 I have no lesson plan, I can't teach. And everybody 0:15:10.680 --> 0:15:14.000 here in this community, just like in other communities, deserve 0:15:14.120 --> 0:15:17.480 the right to have a COVID and along COVID lesson plan. 0:15:18.880 --> 0:15:23.800 We don't think about how difficult to navigate the health 0:15:23.840 --> 0:15:27.880 care system is. Like I'm a nurse. I'm a nurse 0:15:28.600 --> 0:15:33.040 with a genius like you, and I'm so I'm struggling. 0:15:33.080 --> 0:15:36.400 I'm dying. I'm struggling so hard to navigate the health 0:15:36.440 --> 0:15:38.480 care system. And I don't even know what I'm struggling 0:15:38.480 --> 0:15:40.440 with because like I've got all these appointments and all 0:15:40.440 --> 0:15:44.960 these doctors, nothing's happening. I don't know what's going on. 0:15:45.960 --> 0:15:50.480 I don't know. It's like I'm the middleman. I'm the 0:15:50.600 --> 0:15:54.160 one in the middle coordinating at all. What's the point 0:15:54.200 --> 0:15:56.560 of that if I need fourteen specialists? Am I really 0:15:56.600 --> 0:16:01.600 capable of being a middleman? Oh? This whole long COVID 0:16:02.200 --> 0:16:09.840 journey has exposed some rather ugly troots about our medical 0:16:09.880 --> 0:16:19.480 system for folks who have chronic conditions and have suffered 0:16:20.920 --> 0:16:29.880 for decades in some cases, without attention, without acknowledgment. Now 0:16:29.920 --> 0:16:36.320 we're dealing with something on a tremendously large scale. I 0:16:36.360 --> 0:16:41.880 hope someone is taking note that the amount of people 0:16:42.040 --> 0:16:50.960 being affected by this will have unforeseen circumstances unless something 0:16:51.080 --> 0:16:55.600 is done help the people that are sick. We are 0:16:55.680 --> 0:17:03.120 people who contribute to helping things run. We are people 0:17:03.200 --> 0:17:07.840 with lives with families. Help us get better. That is 0:17:09.640 --> 0:17:15.520 why these systems were supposedly in place to protect the people. 0:17:15.800 --> 0:17:23.960 So protect the people. This community deserves some answers. So 0:17:24.000 --> 0:17:27.760 I started calling elected officials to convey some of their 0:17:27.920 --> 0:17:32.960 urgent needs. Are you I'm good. Congressman Don Buyer, a 0:17:33.040 --> 0:17:36.200 Democrat from my home state of Virginia, was the first 0:17:36.240 --> 0:17:40.439 to bring long COVID legislation to Congress. This was back 0:17:40.560 --> 0:17:46.000 in December of He then reintroduced the same bill in 0:17:46.119 --> 0:17:52.399 April of What motivated you to take the lead on 0:17:52.440 --> 0:17:56.760 this issue. We were getting lots of feedback from people 0:17:56.840 --> 0:18:00.240 that I represent in northern Virginia, and we are to 0:18:00.280 --> 0:18:06.240 pay attention to it because, um, long COVID is so fuzzy, 0:18:06.320 --> 0:18:10.280 I mean, two hundred different symptoms, really difficult to diagnose, 0:18:11.040 --> 0:18:14.000 but very real. It reminded me a little bit about 0:18:14.080 --> 0:18:17.120 where we were with flon disease twenty years ago, where 0:18:17.640 --> 0:18:20.360 people say, well, that's in your head, um, but we 0:18:20.440 --> 0:18:22.720 know this isn't in your head. And it was affecting 0:18:22.720 --> 0:18:25.840 people and really bad ways, like they were getting turned 0:18:25.880 --> 0:18:29.160 down for disability assurance UM, but at the same time 0:18:29.280 --> 0:18:31.440 they couldn't really go to work, so then the Employment 0:18:31.440 --> 0:18:34.280 Commission would say, well, we don't qualify for unemployment. So 0:18:34.680 --> 0:18:39.119 people are getting a really bad economic situations. And we 0:18:39.240 --> 0:18:42.200 thought this is also at a time when the country 0:18:42.280 --> 0:18:45.840 had divided, this would not should not be a partisan issue. 0:18:46.280 --> 0:18:49.680 The connersman, Jack Bergman, who is a Republican from Michigan, 0:18:49.720 --> 0:18:53.200 has been my partner on most of these things, which 0:18:53.240 --> 0:18:55.080 is great because that way we can go forward together. 0:18:56.119 --> 0:18:57.800 I was going to say, I think a lot of 0:18:57.840 --> 0:19:02.440 people in the COVID long COVID community are really frustrated 0:19:03.000 --> 0:19:06.880 because they feel like, you know, where's our government, why 0:19:06.880 --> 0:19:11.280 don't people care? And you know, the symptoms can be 0:19:11.560 --> 0:19:16.119 just terribly debilitating. And I know that the Long Haulers Act, 0:19:16.160 --> 0:19:19.320 your bill, hasn't really made any progress for almost a year, 0:19:19.720 --> 0:19:21.439 so a lot of people are out there saying what 0:19:21.560 --> 0:19:25.600 the heck is going on? Where is Congress and now? 0:19:25.680 --> 0:19:29.119 And and part of it is I mean, it's sad, 0:19:29.160 --> 0:19:34.800 but the COVID has greatly restricted our ability to get 0:19:34.800 --> 0:19:38.320 things done. We had the state of the Union address, 0:19:38.480 --> 0:19:41.080 and almost everyone was there without a mass because of 0:19:41.119 --> 0:19:43.760 the new CDC guidelines. So I'm hoping we'll be able 0:19:43.760 --> 0:19:47.040 to work once longer, harder weeks and get more things done. 0:19:47.800 --> 0:19:49.680 And this Carly needs to be at at the top 0:19:49.680 --> 0:19:54.040 of the list. Senator Kane introduced a new long COVID 0:19:54.080 --> 0:19:57.600 build a Congress. It's called the Comprehensive Access to Resources 0:19:57.600 --> 0:20:02.199 and Education for Long Covid Act. It's legislation designed to 0:20:02.200 --> 0:20:06.080 help people living with long term COVID symptoms. Have you 0:20:06.160 --> 0:20:09.560 had a chance to review this and and any thoughts 0:20:09.640 --> 0:20:13.240 on that? Yeah? I think it's a great piece of legislation. 0:20:13.680 --> 0:20:16.399 And what what Senator Kane's legislation does is build on 0:20:16.840 --> 0:20:20.879 the different iterations of the last two years you've started with. 0:20:20.920 --> 0:20:25.280 The very morning I interviewed Congressman Buyer, Senator Tim Kane, 0:20:25.680 --> 0:20:30.480 who himself continues to experience long COVID symptoms, introduce the 0:20:30.640 --> 0:20:34.320 Care Long Covid Act to Congress. Could this be the 0:20:34.359 --> 0:20:38.320 boost of adrenaline the long COVID cause needs to get 0:20:38.359 --> 0:20:42.800 federal help? Is it even enough? Hey Katie, Tim Kane here, 0:20:43.160 --> 0:20:45.840 Hey Tim Kane here, how are you? I talked with 0:20:45.920 --> 0:20:49.400 Senator Kane to find out. Tell us a little bit 0:20:49.440 --> 0:20:52.720 about the Care Long COVID Act and how it's going 0:20:52.800 --> 0:20:55.760 to help these you know, literally millions of people who 0:20:55.800 --> 0:21:00.280 are experiencing this, Katie. The first bit of news good 0:21:00.320 --> 0:21:01.920 news is we got a little bit of a head 0:21:01.960 --> 0:21:05.160 started in an American rescue plan that we passed um 0:21:05.240 --> 0:21:08.720 a year ago in Congress because we put funding into 0:21:08.760 --> 0:21:12.280 that bill for the NIH to do research on long code. 0:21:12.320 --> 0:21:15.520 So they've they've started the research. But what the what 0:21:15.560 --> 0:21:17.920 the care skill would do? And I want to thank 0:21:18.000 --> 0:21:22.639 my principal House sponsors, Don Buyer of Northern Virginia, and 0:21:22.720 --> 0:21:25.440 my co sponsors and the Senator Tammy Duckworth and ed 0:21:25.520 --> 0:21:29.120 Market Massachusetts in Illinois. What we will do is basically 0:21:29.119 --> 0:21:32.080 four things with the bill. First, we will try to 0:21:32.119 --> 0:21:35.280 really have a good federal database to catalog the kinds 0:21:35.320 --> 0:21:40.359 of symptoms and complaints that people am our. Public data. 0:21:40.640 --> 0:21:44.159 Public health data infrastructure in this country was sort of 0:21:44.200 --> 0:21:47.840 week before COVID that actually hurt us in dealing with COVID. 0:21:47.880 --> 0:21:50.160 We want to do a very good job of gathering 0:21:50.160 --> 0:21:53.400 the data about patient experiences. That's number one. Number two 0:21:53.560 --> 0:21:57.280 with that data and with other studies that that hospital 0:21:57.359 --> 0:21:59.720 Sloan Sloan Kettering and New York is doing this, and 0:22:00.040 --> 0:22:04.800 theres are two um we we want to um basically 0:22:05.200 --> 0:22:08.920 do a deep research into causes and cures. And then 0:22:08.920 --> 0:22:10.840 the last piece of the bill, sort of the third 0:22:10.840 --> 0:22:15.639 piece is once we've catalog the concerns and co plaints 0:22:15.640 --> 0:22:18.080 and we do research and the causes and cures, how 0:22:18.119 --> 0:22:21.960 can we get that information out to patients and how 0:22:21.960 --> 0:22:25.600 can we get that information out to providers, Because again, 0:22:25.640 --> 0:22:28.520 we don't want somebody who is experiencing this to go 0:22:28.600 --> 0:22:32.879 in to a provider and be told, oh, well, you know, um, 0:22:32.920 --> 0:22:35.600 it might be anxiety, might be depression. It's been a 0:22:35.600 --> 0:22:37.760 tough time a lot of people were doing with tough issues. 0:22:38.160 --> 0:22:40.800 We we really want to communicate all these best practices 0:22:40.840 --> 0:22:44.320 and the research to the provider community and also the patients. 0:22:44.920 --> 0:22:48.480 The more information, maybe you reduce the uncertainty a little 0:22:48.520 --> 0:22:52.320 bit and that might help people deal with this. You know, 0:22:52.359 --> 0:22:57.200 if I was experiencing severe long COVID symptoms, I might 0:22:57.280 --> 0:22:59.320 listen to this and want to pull my hair out 0:22:59.440 --> 0:23:02.600 because it's sounds like we need to study and really 0:23:02.680 --> 0:23:06.320 gather data, etcetera, etcetera. And I might be saying Hey, 0:23:06.480 --> 0:23:09.159 I love you, Senator came, but I need relief now. 0:23:09.680 --> 0:23:13.440 And this hasn't even happened. This bill hasn't passed, and 0:23:14.160 --> 0:23:20.000 you know, I'm desperate. So, um, are there more immediate 0:23:20.080 --> 0:23:22.440 things that can be done? A lot of the patients 0:23:22.480 --> 0:23:26.320 we talked to said they really need financial help and 0:23:26.480 --> 0:23:29.320 some kind of job security. And I don't know whether 0:23:29.400 --> 0:23:33.160 there's uh something we could do with the Disabilities Act 0:23:33.280 --> 0:23:36.720 that might help people who are in this situation. But 0:23:36.760 --> 0:23:41.840 they have these mounting medical bills and they have to live, 0:23:41.920 --> 0:23:45.439 and they're they're really in dire straits. And you know, 0:23:45.560 --> 0:23:47.560 I'm not even one of them, but I feel for 0:23:47.600 --> 0:23:50.919 them so much because what you're describing sounds like it 0:23:50.960 --> 0:23:53.560 will be a long time coming. With all due respect 0:23:53.680 --> 0:23:58.600 and even appreciating your the attention you're paying to the issue, 0:23:58.920 --> 0:24:01.720 we know, I think that's a fair concern. Even the 0:24:01.760 --> 0:24:04.639 dollars that'll be allocated a year ago to research. You 0:24:04.680 --> 0:24:07.439 don't necessarily get an answer on a research question just 0:24:07.520 --> 0:24:10.199 like that. You know, you really have to do it 0:24:10.240 --> 0:24:12.960 and do it right in order to come up with answers. 0:24:13.000 --> 0:24:16.520 But there are some there are some immediate term things 0:24:16.560 --> 0:24:19.199 that I do think are important one is um the 0:24:19.200 --> 0:24:22.640 Biden administration has already put out some guidance about long 0:24:22.720 --> 0:24:26.679 COVID as being a kind of condition that needs to 0:24:26.760 --> 0:24:30.120 be protected by the Americans with Disabilities Act. So, for example, 0:24:30.640 --> 0:24:33.400 the Americans with Disabilities Act would suggest that in an 0:24:33.400 --> 0:24:37.520 employment setting, an employer should offer you accommodations if you 0:24:37.600 --> 0:24:41.280 have health related issues. Folks who have long COVID need 0:24:41.320 --> 0:24:44.520 to be given accommodations at the workplace. And again we 0:24:44.560 --> 0:24:47.679 may need to communicate that that that out to employers 0:24:47.760 --> 0:24:50.320 and to employees about the way to ask for those 0:24:50.400 --> 0:24:53.240 kinds of accommodations. But there is a legal protection right 0:24:53.280 --> 0:24:55.919 now that I think would provide some help. And then 0:24:55.960 --> 0:24:58.200 the second thing is on the on the medical side. 0:24:58.240 --> 0:25:03.000 Even as we're doing big picture research, there there are 0:25:03.040 --> 0:25:07.399 treatments for some of the long COVID conditions. So, for example, 0:25:07.960 --> 0:25:11.159 somebody would hear me describe when I'm going through and 0:25:11.160 --> 0:25:15.800 would say, well, that's a neuropathy, and often a peripheral neuropathy, 0:25:15.840 --> 0:25:18.720 tingling in the fingers and toes. That's not that unusual. 0:25:19.160 --> 0:25:22.640 It comes with follows diabetes and follows other things. There 0:25:22.640 --> 0:25:26.120 are treatments for some of these conditions already that could 0:25:26.160 --> 0:25:30.520 probably be adapted to my circumstances. Now, somebody with a 0:25:30.600 --> 0:25:34.400 cardiac a racing heart rate or a regular heart heart rate, 0:25:34.840 --> 0:25:37.240 you know that's there's gonna be a different treatment. But 0:25:37.240 --> 0:25:42.480 but because um, after effects of viruses have been known 0:25:42.600 --> 0:25:46.560 before other viruses, we might be able to adapt some 0:25:46.600 --> 0:25:49.920 of those treatments for people's conditions right now. And that's 0:25:49.960 --> 0:25:51.320 the kind of thing where you know, I'm not gonna 0:25:51.520 --> 0:25:54.080 practice medicine, especially as a non doctor in a zoom 0:25:54.119 --> 0:25:56.200 call with you, but as people could go on and 0:25:56.240 --> 0:25:59.080 say I had COVID, here are the symptoms. Okay, even 0:25:59.119 --> 0:26:02.040 separating apart from COVID the symptoms you describe, there are 0:26:02.200 --> 0:26:05.760 treatments for some of those symptoms, and hopefully those might 0:26:06.280 --> 0:26:09.040 provide some relief to people. And what about sort of 0:26:09.080 --> 0:26:13.680 the financial assistance for people who have lost their jobs 0:26:13.760 --> 0:26:17.879 and have mounting medical bills. What's being done to address that? 0:26:17.960 --> 0:26:21.400 And is the government? Does the government have a responsibility 0:26:21.440 --> 0:26:26.280 in that arena? Well, Katie, we ultimately do, because look, 0:26:26.440 --> 0:26:31.680 it's not inconceivable that um, somebody with long COVID symptoms 0:26:31.800 --> 0:26:35.720 might eventually qualify for Social Security disability, where there would 0:26:35.760 --> 0:26:39.720 be a financial assistance for them. In fact, I haven't 0:26:39.720 --> 0:26:42.080 done the research on this, but I'm sure, I am 0:26:42.119 --> 0:26:45.800 absolutely sure that there's already Americans who have been filing 0:26:45.840 --> 0:26:49.080 and going through the disability process because of their own 0:26:49.160 --> 0:26:51.920 COVID and the after effect. Is there more that can 0:26:51.960 --> 0:26:55.160