One mom rages against COVID with Andy this week: Survivor Corps founder Diana Berrent. Diana is a fierce advocate for those with remaining COVID symptoms and she has taken a number of amazing actions on behalf of them. This episode will grip you, speak to your heart, steel your spine, and give you some brand new information on some undiscovered questions about how COVID-19 works in our bodies.
Keep up with Andy on Twitter @ASlavitt and Instagram @andyslavitt.
Follow Diana @DianaBerrent and Survivor Corps @Survivor_Corps on Twitter.
Joining Lemonada Premium is a great way to support our show and get bonus content. Subscribe today at bit.ly/lemonadapremium.
Support the show by checking out our sponsors!
- Click this link for a list of current sponsors and discount codes for this show and all Lemonada shows: https://lemonadamedia.com/sponsors/
Check out these resources from today’s episode:
- Learn more about Survivor Corps: https://www.survivorcorps.com/
- Read about Dr. Akiko Iwasaki’s study of the vaccines’ effects on COVID long haulers: https://news.yale.edu/2021/05/10/study-probes-vaccines-effects-people-long-covid
- Check out this update on 12-year-old Addison Adams: https://www.weau.com/2021/08/12/girl-12-slowly-sees-relief-after-battling-10-months-long-hauler-covid-19-symptoms/
- Here’s the NIH’s announcement of the initiative to study long COVID: https://www.nih.gov/about-nih/who-we-are/nih-director/statements/nih-launches-new-initiative-study-long-covid
- Read the paper that Survivor Corps and Dr. Harland Krumholz published about breakthrough cases and long COVID: https://www.medrxiv.org/content/10.1101/2021.07.23.21261030v1
- Learn more about monoclonal antibody therapies: www.gotcovid.org
- Find a COVID-19 vaccine site near you: https://www.vaccines.gov/
- Order Andy’s book, Preventable: The Inside Story of How Leadership Failures, Politics, and Selfishness Doomed the U.S. Coronavirus Response: https://us.macmillan.com/books/9781250770165
Stay up to date with us on Twitter, Facebook, and Instagram at @LemonadaMedia.
For additional resources, information, and a transcript of the episode, visit lemonadamedia.com/show/inthebubble.
Andy Slavitt, Diana Berrent
Andy Slavitt 00:19
Welcome to IN THE BUBBLE. We’ve got another incredible discussion today. Just incredible. I’m your host, Andy Slavitt. The next handful of episodes are just frankly ridiculous in some of the people and content and information coming your way, we are so fortunate to have the people that are coming on the show beginning today, with Diana Berrent. She’s the founder of an organization called Survivor Corps, which has become the patient advocacy voice for people with COVID. It’s a missing voice, it’s a missing piece. You know, we see a lot of science, we see a lot of government, we see a lot of business, we let our opinions, but things don’t happen without advocacy. We would not have the cure for Cancer, and Alzheimer’s, and other things being worked on in the research funding. If it wasn’t for advocacy, we wouldn’t have the Affordable Care Act if it wasn’t for advocacy. And as you will hear in a minute, COVID-19 has found a voice. It’s a unique voice, it’s a needed voice.
On this episode, I’m going to warn you, you will hear anger, you will hear passion, you will hear pleading. But what you won’t hear is hopelessness, you won’t hear quit, and you won’t hear much compromise, you will hear an incredibly assertive voice, I think she would describe it as the voice of a mom advocate who has basically taught herself incredibly, so many things there is to know about COVID and living with COVID. And it reflects not just for people who have had COVID, living with COVID. But it is a conversation that reflects so broadly on all of us, and I will invite you not to listen for the data. Because I think, you know, the data and information that we talked about, is still developing. And Diana has done a quite a nice job. Informing herself, but some of the precise data she will tell you which still we’re still learning about. But boy, the ideas on the show are just incredible.
Andy Slavitt 02:35
And you will hear the passion of someone who has learned everything the hard way, sees our broken parts, feels our broken parts, I end up doing very little talking. And as you know, it’s sometimes hard to get me to shut up. But I didn’t need to. There’s just a number of actually really incredible moments. Some things that Diana said, some stories that she told that I needed to actually replay to make sure I heard them right and to just let them soak in. So you may need to hit that. That 32nd circle button a couple times. And the filtering and fast speed, God help you. And I wanted to just don’t tell that a quick sermon before we get into this, which standard made me think a lot about which is what’s the role of anger in a moment like this. Generally speaking, anger channeled the wrong way, is unproductive. We often get mad at the wrong things and the wrong people. And that is because we’re mad. We’re mad that this virus is out of control or mad because we’re still here.
We’re mad because it’s disrupting our lives. I heard story from a mom about today about a kindergartener who’s half of her basically conscious life has been during COVID. And she’s more literate in COVID than she is in any other topic and she’s going into kindergarten this year, for the first time. She saw a spiky ball the other day, her mom told me and described it as COVID. And that makes you upset, makes you angry makes you mad. Sometimes when you think about that this is eclipsing much of our world. And so we see things and we get this inner anger. But it doesn’t mean it’s well pointed. It just were angry. And then something happened. Somebody does something right in front of us. Something stupid. Maybe it’s an anti-masker or an anti-vaxxer. Or maybe a stupid tweet from somebody. And you know, maybe it’s China because we think they caused the virus if you’re aware of that that belief. Maybe it’s a politician who’s doing some stupid. He may even be someone who’s just innocently doing nothing. But they’re not paying attention to what we’re paying attention to or what you’re paying attention to here, like, how could they not get it?
And so whatever it is, it comes in front of you, that’s where your anger lands, in a disproportionate amount to what that person may deserve. And, you know, let’s face it, being angry isn’t great, but it probably feels better than feeling sad. At least for the time being. But ultimately, it chews us up inside. And it’s not great for our relationships, either. So, you ask yourself, well, how do we brighten our outlook? Like we tried different things, right? So we figure out what could we do with our anger? How do we think about channeling that anger? Okay, so, alright, here it is. Yoga. Right? Breathing, deep breaths, deep breaths. perspective, get a different perspective on life. Exercise, fresh air. Enjoy the stuff that you love. I mean, those should brighten up our outlook. Okay. All right. How to work. Are you’re still angry? Damn. My 25-cent armchair advice didn’t work. So acknowledge that you’re gonna have some anger maybe some residual anger maybe, miss period somehow. So channel it, figure out how to channel it and Diana is about to give us an all a masterclass on how to channel it.
Andy Slavitt 06:35
Now, I think you’ll get through this and well, I can’t necessarily do what Diana did. What Diana does, of course, we can all do what everybody has different skills, but you know, very simply, channeled into helping people. And this is the Fred Rogers part of our show, I think, my lesson for listening to Diana, do some crazy nice thing for someone who’s just worse off here than you are, or just do a small thing. Also, don’t worry so much about what we can’t control. It’s easy to get whipped up into a fever pitch and angry when you think about well, this is what’s gonna be like in five years, and then 10 years and all those things are places where her mind goes. But I will tell you that at a societal level, and probably because I’ve got nothing very, very helpful for all of us as individuals, but at the same level, I can tell you, there’s two versions of where this anger ends. And one of them will end in a McCarthyite, like inquisition, revenge, civil disobedience, disruption, the abandonment of all of our principles.
And the other will end with improvements, even small improvements. Take that child that talked about this, this kindergartener, thinking about how she grows up, does she grow up angry at what happened to her childhood, or maybe she grows up with kind of an enlightened view of the interdependence that we all feel from one another. Maybe she grows up with a consciousness and an awareness in her generation that is brought about by the events of today. And the thing she missed out on that causes her to be a better person, makes us a better generation. Causes her to want to support others and help others. Maybe, maybe that happens, I wouldn’t be surprised. And that support is important. And speaking of support, I want to announce also some very good news that we are, we being you, the listeners of IN THE BUBBLE, are making an $18,000 donation to Survivor Corps as our monthly contribution.
Andy Slavitt 08:58
It’s actually $18,018.83. We’re donating it to Survivor Corps, you will hear the incredible work they do. They’re a two-person staffed organization; this gift will really help them. This gift is only possible because you listened to the show, because you tell your friends to listen to the show. Because some advertisers are nice enough to want to sponsor a show. And you kind of have to listen to those ads because you support the program in all kinds of ways. And I am so grateful. So grateful that we’re able to make this donation because of you. And that’s the show I donate all of the profits given to me to causes like this. Now we’re about to hit Diana, and she doesn’t know during this interview that the gift is coming. It’s not part of the interview. But you’ll be able to listen and know that as well. I hope you really enjoyed this interview. I learned a ton.
Andy Slavitt 10:03
Let’s start with this I think this serious question. Other than death, which I think we both agree is a bad outcome. What are the other things that can happen to people who get COVID? beyond just the kind of episodic phase that we’re all aware of, of getting an infection?
Okay, I think that that is actually the perfect question to start out with, because it’s the most basic misunderstanding about COVID that there is. There is no such thing as a mild case of COVID. And I used to say that there were two buckets of people who fell into the long-haul category. And we’re not even talking about just the acute damage from the contagious phase of COVID where, you know, we originally thought of it as a respiratory disease, we quickly moved on to understand it as a vascular and inflammatory disease, I believe we will look back on it largely as a neurological disease actually. And so what happened, you know, beyond what we know, that happens during the contagious phase, which we’re all very well aware of, remember, only a small subset ended up in the hospital. I don’t even like calling that the acute phase, because for many people, the acute phase happens afterwards. So I used to say that there were two buckets of long haulers, those who were sick from the day they got ill. And these are the people who were on day 530, of being horribly sick, horribly ill.
And I will give you multiple examples of what kind of damage it’s doing. But just to set it up, there’s that group and then there’s a second group who has a more record destined a relapsing and remitting pattern of their symptomology after the contagious phase, and I fell into that category. I had COVID in early March, I felt pretty much better by the beginning of April, I was still having tremendous headaches and terrible. was one of the first people to get a positive test, one of the first non-healthcare workers, one of the first people to go public with my story. And I became the face of sort of the non-hospitalized COVID patient, I have what I call the Tylenol and Gatorade variety of COVID, where you are given Tylenol, Gatorade, thoughts and prayers, which is, by the way, still our standard of care for at home COVID treatment, which is, you know, I, we can talk about that as well. So there are these two buckets. And then I would actually argue that there’s a third now that these are the people who we don’t know, and they don’t know what damage has been done.
Diana Berrent 12:37
And so I use my son as an example, he is now 12, he was 11 in winter of 2020, he had a pretty average case of COVID, couple of weeks of what seemed like a sinus infection and fatigue, later tested positive for antibodies on and I never would have called him a long-haul kid. You know, he had stomach aches and headaches, but I didn’t know that that had anything to do with COVID. And I probably did it. Nine months later, one of its front adult teeth fell out unprompted with no blood loss due to vascular damage from COVID. Okay? So COVID can act like a ticking time bomb in the system, and be set off at any moment in time in any part of your body. And so there are many deaths that are going on right now that are well delayed from COVID that are not being attributed to COVID that are the result of the damage that is done to the body.
How much would you say of COVID as a virus? Do we really understand biologically, today, versus where we were a year ago versus where we assume will be five, seven years from now?
Well, I would say that we know much more about hospitalized COVID. We don’t know everything about hospitalized COVID. But we’ve known absolutely nothing about non-hospitalized COVID. Because we haven’t studied it, you have to think about the fact that this is the first time in modern medical history that we have completely excised the general practitioner from the medical landscape. And we’ve used the emergency room as our first line of medical defense. So we are told to stay home until you think you are dying. When you think you are literally dying, go to the emergency room. Other than that stay home and best of luck. And so there are studies, our studies are all based on hospitalized patients. Because how do you get an electronic health record on somebody who has never gone to see a doctor? You know, I had COVID in March the first doctor I saw was at the end of August.
Diana Berrent 14:46
And that was because I had tremendous advantages because of the fact that I had started Survivor Corps that I even had access to those doctors in August. Other people in my group who were trying to get access to the post COVID Care Center at Mount Sinai out which was the first one up and running, were given literally six to nine month waiting list. And those were only by the way for the people who had a positive test on their record, because those are the only people they will admit. And even though the CDC changed its guidance, partially due to our lobbying in June, they changed it to say, you no longer need to have a positive PCR test or an antibody test to be diagnosed with long COVID. But there’s a huge difference as we found between the messaging coming from the CDC and actual implementation.
Yep, let’s help us just sort of get an estimate here, which I know is gonna be very rough, because we haven’t been collecting data. But if roughly, you know, we’ve got, you know, 10s of millions of recorded COVID cases, we know we probably have over 100 million in the US, I should say.
It’s been estimated, I mean, the statisticians have said, approximately 135, probably 135 million cases in the country. And I think that we can say, I think, a safe estimate, and maybe a little bit on the conservative side, but I’d rather go on the conservative side, then use scare tactics and then be proven wrong. I’d say the safe estimate is 1/3. The UK had come out with a 10% floor. And that had been used for a while and it’s still being mistakenly used. They’ve actually raised the floor to 25%. The CDC has said between 25% to 35% started and they start saying that in July of 2020, they’ve never changed that rate. I interviewed Dr. Fauci on the subject in October, he also suggested around 1/3, we don’t know because we are, we don’t know what we’re not tracking. And again, how are we going? I mean, also, what is your definition? What my kids count? What I count?
Andy Slavitt 16:58
to the best of our understanding is we understand the biology of COVID-19. And as we understand the number of people that it impacts…
I would that we do not yet understand the biology of long COVID at all. In fact, that’s one of the studies that we are partnered Yale, with Dr. Iwasaki. In trying to figure out what exactly is the biological mechanism that is fueling long COVID? Because until we understand that, how do we possibly find a road to an effective therapeutic?
Exactly. And the implications of some of the things that you’re saying is that even people who have symptoms that don’t notice or no symptoms at all, that the virus somehow lingers somewhere in the body.
Right. So that is one of the theories. So there’s a theory that there is viral persistence, so that there are viral pockets leftover and we have found that I mean, we find COVID in people’s stool, we find it in periodontal pockets. I was hospitalized last February for the first time in my life, by the way that other than having babies. This was 11 months after having COVID, half of my face swelled out and started to droop over the course of a couple of hours, I went to the emergency room as a writ of having a stroke of some sort, I was actually on the phone with one of the doctors on our advisory board. And he could tell just in the course of time, we’re on the phone, I lost range of motion, my jaw and my speech was impacted. It’s like you better get to the emergency room right now.
Diana Berrent 18:31
And I went and lo and behold, they found a viral abscess in my masseter muscle, my jaw muscle. No one had ever seen anything like it, they couldn’t biopsy it because it was too dangerous of a place to get to. And so they just pumped me full of steroids and just waited it out. And I don’t even know if it’s there anymore or not. But everyone suspicion is that that was a viral pocket of COVID. Because I didn’t have a high white blood count. I didn’t have a fever, nothing heard. There was nothing indicative of a bacterial infection. So we don’t know or it could be an over and unregulated immune response, which is why we are seeing it more in younger healthier people and more in women than in men, just because in the same way that we see more autoimmune diseases in women.
So let’s talk about some of these other theories. One of them is this essentially hiding of the virus. Other thing and this is, you know, my son Zach, who people on this podcast have heard from time to time, kind of fits this category, 19-year-old buff. I say this very jealously not proudly, he works out three, four hours a day. Yet, you know, he’s one of the people who had COVID last fall, and still experiencing symptoms sporadically. I think he’d be in the second bucket that you talked about. And I would again, assure people listening, he’s fine. I mean, he’s not letting this get in the way of his life. And he’s not someone who’s deserving of our sympathy.
Diana Berrent 20:31
Wait, hold on before we say that he’s not letting it get in the way of his life, he is extremely lucky that it is not severe enough to be getting in the way of his life because it was not a matter of letting something get in the way of her life. If you are I mean, we have member, one of our members is 31 years old has four little kids cute as a button. tiny little thing, adorable. She’s been on a feeding tube for a year and just had 11 teeth removed last week.
That’s my point, excuse my language, he’s symptomatology is very light, he would consider himself on the very, very light end of the spectrum. And yet, of course, his parents you don’t like to see that even in the most mild cases. When a chair kid, something that someone else describes as mild feels a little different. One thing that I think you know, that I have been crying about a lot of what this tells us that I’m not exempting myself from this is all as weird. So we’re not nearly as good at empathy as we pretend to be. As people this country, there’s one lesson I tried to learn to get to get better at it, I think your story and you’re explaining these stories, helps people because there’s a lot here that isn’t seen. I just want to make sure that you do is complete a job as you want to be able to do on what some of the other theories and causes are before we get into policy, solutions, ideas, what’s happening now, and some of the other impacts. So is there any anything else about the way it works? And what that people should know about even if they’re just theories that we don’t know for sure how they work yet?
Diana Berrent 22:06
So look, there are basically, there are a couple of theories out there, that are sort of what is fueling it, is it viral persistence, is it this unregulated, overactive immune response, basically, an invader came into your body, you know, the robber showed up. They like had a freakin party, they wrecked the place and your body is still fighting the robbers even long after they’ve gone. That idea that your body hasn’t gotten the message to turn off that fighting. It’s fighting against itself. And it’s probably could be a combination of the two, Dr. Akiko Iwasaki at Yale, who is you know, it’s I consider the Christie […] of science these days. She floated the theories on Twitter last winter. And Dr. Dan Griffin, who is another one of my favorite doctors out there who hosts this week in virology. And he talked, he said, you know, some of my patients are actually feeling better after the vaccine. And we have been tracking, we were prepared for every wrong thing that could possibly happen with the vaccine when it came to long haulers, because the long haulers were not a distinct cohort in the trials.
And so there was, you know, real, there was a lot of nervousness and, you know, fair enough. And I been running webinars for a year and a half. And every single expert I’ve had on we get reader, you know, members submitted questions and the top question for every single expert no matter what their area of expertise was, is that vaccine going to be safe for me? So we were ready to track everything that could possibly go wrong. The only thing that hadn’t occurred to us is that people would feel better. And so when I saw that, and actually a reporter from the Wall Street Journal reached out to me and said, I’ve been hearing this rumor that people are feeling better. You heard this and I was like, oh, I’ve heard the same rumor, but I can’t find anyone who can actually say it and it just turned out that it was a little bit too early. And I wait. So I did a poll. I didn’t really find much. I did it again a couple of weeks later, once more people had been vaccinated and a little bit more time and this was maybe early March now. So we had a larger pool of people vaccinated in the group. And out of 2000 people we found that 45% had some degree of symptomatic relief after the vaccine. 14% felt worse, 14% felt worse but 45% anywhere from some symptomatic relief to full symptomatic relief.
Andy Slavitt 24:58
The other folks, no change? Let me just repeat since the numbers sound similar, 45 ish percent, people found either some or more complete relief, although you’re not saying it’s permanent, it’s at least temporary. 14% felt worse, and about 40% the same.
And so we put that data and brought it to Dr. Iwasaki, and said, okay, here you have this theory. Here are the numbers. And so within about two weeks, we had a joint Survivor Corps Yale study up and running, where she and her team are analyzing auto antibody assays and long haulers before and after getting the vaccine to look at what the biological mechanism is, like, if it’s not saying that the vaccine is a cure. The vaccine was a clue. It was offering a breadcrumb trail to help us understand possibly what is going on because we can’t figure out how to treat it until we know what’s causing it.
Andy Slavitt 26:10
I do want to ask you the skeptical question. And I want to ask you respectfully. And I know you’re used to answering this, just in terms of some of the framing 130 million Americans, a third of them would be about, you know, called 40 million people. Do we really think that there’s 45 million people in the US walking around with symptoms from COVID? Which is more than the number of reported cases by the way? Do we think so? And if so, explain it, explain it to people who might look at that and say, that just doesn’t seem possible.
Look, this is a novel virus, anything is possible. The numbers are absolutely staggering. 100%. But as the number of people who’ve been infected, it’s staggering. And, you know, let’s say it was only 10%. Okay? Let’s say it was just for argument’s sake. And you said that there were 13-14 million people walking around with this, as opposed to 40 million, that would also seem staggering, because when it comes to COVID, and it comes to this sort of tracking, a small percentage of a very large number remains a very large number. And I hate to say it, but we are truly seeing that this 1/3 seems to be, if anything, a low estimate, because the studies that are coming out of Italy and China show a month because they had it before us remember? Going much higher numbers, they’re going like 50% to 80%.
Here’s where I want to go with this. Because I think people I think many people will say 40 million people, that means more than 10% of the people that I come across in this country are suffering from long COVID symptoms. And I think people will say in their own experience that would shock them. So I want to help people understand why that you’re saying that could be the case, why that is? Is it because the ability to recognize your symptoms? Is it because many are quiet about their symptoms? Is it because some of the symptoms are what, I don’t want to put a label on anything, anything mild, but because they’re fatigue or things that have other presentations, on other causes, help people understand why you believe that, you know, 10%, 12%, 13% of people we see around us in the public are suffering from lung COVID symptoms.
Diana Berrent 28:36
You know, it’s until we start counting anything, it’s hard to prove anything, but we’re looking at studies that where people are doing general population surveillance, and those are the numbers that are coming up. And if you ask people do you know anyone who had COVID? Almost everybody will say yes. Do you know anyone who died of COVID? Maybe yes, maybe no who know of a friend of a friend or a friend’s parent or maybe you have multiple people who you know who died, but almost everybody.
Depends if you’re white or black. It depends if you work by the hour by salary.
Absolutely. You might not even recognize that you have long COVID. You might just you know, every time I go on air, I am flooded with emails afterwards of saying, oh my God, I thought I was crazy. That’s what I have. I had COVID and I thought that I was going crazy because everyone around me who had COVID like my husband had COVID I had COVID my husband had the most mild symptomatic positive case of anyone I know. He was fine within three days and he had zero lingering symptoms at all and he has MS. I was more concerned about him getting it than me getting it. Because I was just healthiest could be I mean a year before I got COVID keep in mind I was a photographer until I got COVID. And a year before I got COVID I was in India covering the world’s largest gathering of humanity, the Kumbh Mela, chest high in the Ganges River for over an hour and I didn’t even need a pepto bismol. I hadn’t had a fever in over a decade, I worked out multiple times a week, I was in great shape.
Diana Berrent 30:18
My husband hasn’t met, doesn’t exercise at all. He had the mildest case of anyone I know, I had lingering symptoms for a year, you know, there’s this little girl in Alabama, who actually was one of the first to alert, you know, it’s one story that you hear that breaks her heart, and then you find 1000, more just like them. And her name is Addison, and she’s now 12. But her grandmother reached out to me last winter, because she’s having seizures after COVID. And she was having inability to move her muscles, all kinds of really dramatic issues. And she was being treated behaviorally, I can’t make this up, her favorite thing was to play her ukulele. And the school would, and the doctor would suggest that they take her ukulele away every time she had a seizure, so that she would be conditioned to not have them anymore. She’s being punished. I mean, to me, that is tantamount to child abuse. And I got her hooked up with this study on the look, there are only two existing pediatric long-haul centers in the country. And they’ve only opened in the last couple of weeks, there was nowhere to send her, there were no experts. And people need to know pediatricians need to know and parents need to know that if your child has had COVID, or if you’ve had COVID, and you’re experiencing these symptoms, you need to see a doctor, this is not in your head.
So let’s talk about some of the treatments and solutions and lack of progress. And let’s begin back with the role of the NIH. Congress has allocated over a billion dollars in funding, that funding is allocated on behalf of the taxpayers to research what’s going on here and eventually to find the right and best treatments and symptoms, that there are numerous researchers who submitted grants, and that 200 applications have come in. And yet not a single dollar is going out the door. So can you help us?
Diana Berrent 32:24
They’re about to make all of those scientists reapply, they’re gonna have to redo all their applications before we even get to the next step.
So they’re not about to announce a grant date?
Not even close, they haven’t even had that, they created two committees, one out of Mass General one out of NYU, I’m on the NYU side, I sit on that committee, and I can tell you that they are about to have every scientist resubmit their application. It’s the middle of August.
So what are they telling you about what’s going on?
Because they’re spending so much time thinking about the technocratic aspects of it, that they’re not able to move, and they don’t understand the urgency of the situation. And you talk about lack of compassion, lack of empathy, there is a gulf of lack of empathy between our government’s policies and what is going on the ground in real world evidence.
Who’s the person at NIH? Is there a single person who’s accountable. Is there somebody who’s accountable solely for this?
No, I mean, this is his thing. This is his thing. […] I mean, the people who I work with the CDC are, you know, they’re distinct team, and they are amazing at what they do. You know, but yeah, no, I think that this is that a Francis Collins is 100% at his level. And when I got off, I did a call with Congresswoman […] a couple of weeks ago, and I was, I explained what was going on. And she was so livid that she said, as soon as I get off this phone call, I’m going to call Francis Collins and tell him that this is not his money, and we will take it away and give it to a different agency. If they don’t spend it because it is not theirs. They are the custodian of this money. And the one thing that I will then bring up is that I have watched this process go on since day one of the pandemic and watched government funding get filtered out and the contract mining that has gone on.
Diana Berrent 34:38
And we’re tracking the money that the government has spent on plasma, on monoclonal antibodies. I want every dollar that traced because I can tell you it did not end up in the right hands. Because, you know, I want to know what MITRE was doing with all this money that they were entrusted with. KPMG now a custodian of government money what have they accomplished? You know, there’s a lot of money floating around, and very few results. And the government needs to be accountable and as do these contractors who are contracting and subcontracting all this money out and it is being wasted. And meanwhile, people are suffering and dying.
So we got to deal with it. So we got to look into this. And you are flagging something that is a big deal, because we’ve been able to act quickly when we want to, we know we can act quickly when we want to.
Exactly. We have the capability.
Andy Slavitt 36:03
So what do you think? Do we know anything about where we think the solution space lies? And that are the most fertile areas, you mentioned that there’s some positive benefit to some people from the vaccine, some negative to other some, potentially. But, but we think about antivirals, and you think about other kinds of things for, let’s just use the definition of non-hospitalized COVID population. Where are the areas that are most exciting to you?
So I actually, I’ve been working with Governor Leavitt and his group on a platform of what we are demanding from the government. And we’ve been doing a lot of our own lobbying, but they are releasing their registered say, our I guess I’m on their committee. Platform in the coming days, and there are parts of it that I am, I have to say, here’s the thing that I am most excited about that I am, I think is the most brilliant thing I’ve heard was actually Patrick Kennedy’s idea. And it was, think about all these people who are suffering, they’re in so much pain, they cannot sleep. They are, we are getting suicide threats all day long. We have a basically a direct line to Facebook, like to report them because it is just non-stop. These people need help, they will not be admitted to a hospital. There’s no hospital that in America for any of these people right now, because none of their issues are acute enough. And there’s no real way to solve them yet.
So in the interim, we need to a way of managing pain and sleep. And we need to set up not just long, COVID care centers throughout the country that are available to everybody, regardless of insurance. And they’re multidisciplinary. We also need a system of an in house like an inpatient center, similar to like a rehab center, where people can be attended to for pain and sleep management, because and we’re working actually with Dr. Joyner at Mayo, who ran the emergency access protocol for plasma, but his day job as an anesthesiologist. And so we are working with him to try to figure out what are sort of, can we put people in a twilight state for a few days? And give their brain a rest? Stop these tremors for a few days, like give them the pain management. And you know, I saw yesterday. I think it was Dr. Morice from Mayo was concerned about the high rate of opioid prescriptions right now for long haulers. And the concern was, are we going to be creating a new class of opioid addicts?
Diana Berrent 38:58
And my response was that is the wrong question to be asking from that state, that yes, there are if there are more opioid prescriptions being given to long haulers right now, that is a sign of what pain they are in, and what suffering they are in. And that should be the focus not on whether or not they’re going to be addicts at the end. But how do we come up with a better way of treating pain? So we need long COVID care centers, we need these inpatient sort of halfway houses almost, you know, not a hospital, but not in your home either. You need people need treatment. And we need, we needed to be multidisciplinary in a way that goes beyond our traditional sense of what medical and multi-disciplinary means.
When I say multidisciplinary, I’m talking we need to include dental, we need to include ocular and ophthalmology. You know, this is a systemic virus that can attack any organ in the body, which really, you know, proves that the folly of in a system that requires different insurance policies for different organs, that our entire approach to this pandemic has been to only deal with the issue that is literally engulfing us in flames at that moment. And we do not have the capacity, it seems to look one step or two steps down the road to see what is the next problem so we can get on top of it a little bit more before engulf us again in flames and takes up everyone else with it.
Andy Slavitt 40:36
That is so true. That is our pattern. You know, one of the things that the healthcare system in the US is particularly bad at dealing with is when they’re integrated in cross functional problems, because different specialists basically point fingers at one another or draw lines or they just haven’t trained or studied for it. Is there a single specialty that you think is going to be best prepared to that you recommend to people who are facing kind of a whole myriad of different types of symptoms from post COVID or from current COVID? That is the right type of specialty that people should start with it? Is it internal medicine? Is it something else?
No. I mean, we have, there are post COVID care centers that have been opening around the country, Mount Sinai started the first last August, July or August. And they’re now in most states, are still states like Arizona that doesn’t have a single one. And we actually have on our website survivorcore.com, a full listing and map of every post COVID care center in the country. They are not all multi-disciplinary, some of them are set up as pulmonary centers, because they cater to people who were on ventilators, others if they’re doing things, if you’re doing telemedicine for this, then you’re basically dealing with a system who’s gathering your data and offering you nothing. We need to have full body MRI scans, we need FDA approval to be rushed for things like copper scan, which is a full body MRI, covers everything but the brain, the UK is using it in all of their long COVID care centers.
Diana Berrent 42:17
You know, it comes out of Oxford University and has to if it’s not going to be have approval until January. But meanwhile, right now we have people being shuttled around from specialist to specialist, none of whom are speaking to one another even within these supposed multi-disciplinary centers. So that’s the best place you can start because it’s the only place to go right now. But if you wanted I mean, when I look at the task force right now, and I asked where are all the specialists? Where’s the neurologist? You know, in many ways, maybe a geriatrician is the best person to be thinking about this because you need to be thinking about it from a whole-body perspective. One of my favorite doctors on this subject is Dr. William Lee, he is a vascular biologist, because you need someone who can put all the pieces together. And when you have each specialists looking in their narrow window and not sharing information, we are losing, you know, it’s like the you know, all the people with their eyes closed, touching different parts of the elephant trying to identify what kind of animal it is.
So I think a good place to start is to point people to your website, and we’ll have a link to your website under show notes. Tell us about besides the clinical research, some of the other important policy priorities that you have, that you’re advocating for, across a variety of different things. You’re touching so many things, just so impressive. I’d love people to hear about that a little bit.
There are multiple issues that we are demanding. So we went to the CDC, we actually did a breakthrough study a few weeks ago, and I published a paper with Dr. Krumholz, two weeks ago, on our poll that we did within Survivor Corps, you can’t take any of the numbers seriously because it is obviously from a biased sample pool. So take the numbers out, forget about them. What the question I did answered was a binary question. Can breakthrough cases lead to long COVID? The answer was a definitive Yes. We brought our information to the CDC and said we have three demands, we need masking back on indoors, we need people know to even if they have been vaccinated, if they have been exposed or they are symptomatic, they need to isolate and get tested. Right now they’re being told not to. And by doing that, we are repeating the same mistakes of March and April, when we were recreated and, you know, this disadvantaged cohort of people who were never able to prove that they had COVID.
Diana Berrent 44:50
And the third thing was that we need to mandate reporting on all breakthrough cases, all vaccine injury cases, that their system this voluntary reporting system at the CDC is broken, it just doesn’t work, throw it in the garbage and be done with it move on and mandate it. If you know, we’re making the same mistakes because a low count doesn’t when you’re low numbers, when you’re not counting anything, don’t mean low cases, it means bad science. So, yeah, we got two out of the three. So far, still working on the third. There’s also a big difference between getting policy change and getting the message across to people. And we’re not doing a particularly good job of another thing is we have no ICD 10 code yet. Supposedly, it’s in the works under CMS, and it’s going to be unveiled in October and the CDC gave out a, you know, Interim code back in June that not one person I think has ever used, because it was some basic general viral tropical disease code, and no one knew how to use it. And it wasn’t consistent with anything.
The fact that there’s no diagnostic code means that if you die of long COVID, guess what happens, your organs are harvested and implanted into other unsuspecting human bodies, let that sink in. You know, one of our members took her own life in May, from the devastating effects of long COVID she was an organ donor, her husband pled with the hospital do not take these organs, wrote out a list of the 150 symptoms that she had laid it on her corpse, okay, his 13-year-old son went in with him arguing to the head of the hospital do not do this, this is not the right thing she would these are not organs that are suitable to go into another human body. But because there is no diagnostic code for long COVID, and she had never had a positive COVID diagnosis, her kidneys are now into poor, unsuspecting souls. And what HIV did for the blood industry is we are going to have to take a long hard look at our organ donation system as well, because of this, so that’s when I say that each of these, each of these policy issues has a multitude of ramifications.
You have to be able to think 12 steps down the road and start preparing now for the problems we’re going to have tomorrow, not just dealing with the problems that we have today. Another example is how we report medical information to people. We need to empower people to be stewards of their own data. How do we do that without giving them the proper information? When we are given our PCR results? Why are we not told what our viral load is? Because that would be a far more effective way of determining whether or not someone needed monoclonal antibodies is based on their viral load as opposed to the number of days from diagnosis because that’s a meaningless thing. Someone could have gone in on day three, one lab could take you know, four days to get back to you and other person could get it back on a you know, a quick antigen test.
Diana Berrent 48:03
And you know why? For every testing center with there should be a room right next door where they are administering monoclonal antibodies. Again, we paid for them. President Trump got them Chris Christie got them. Rudy Giuliani got them, statistically look at their demographics, look at what they look at their weight, look at everything, they would all be dead, there is no question about it. It saved their lives. And we’ve paid for it with our taxpayer dollars. And yet they are sitting on shelves gathering dust, because they are impossible to avail yourself up. And, you know, we’re complaining, you know. We’re crying about this spike in cases yet we have an effective early therapeutic that would keep people out of the hospital and keep them alive. And we’re not employing it. And that is shameful.
Yes. So well said and I think your idea of pairing up of monoclonal distribution sites along with testing sites is a great idea. And I think moving monoclonal’s from whether administrator administered today, which is just you need to be basically transfused to something that could be administered subcutaneously originally, even orally…
It will be momentarily we’re I mean, we’re partnered with Regeneron we actually started the best portal for monoclonal antibodies out there. It’s called gotcovid.org. We started it back in late February, early March, because we’re small enough and we’re nimble enough, look, we’re only a few people were basic.
I think the milk people are gonna be mad at you though.
Yeah, we did. We actually did. We actually created a gift based on that COVID gets to get monoclonal antibodies in their pond. But we were, look, we are basically the Moms Demand Action of COVID. We’re just a few moms who resumed schooling on the side who took it upon ourselves to do the work that the government was not doing.
Andy Slavitt 50:00
The opportunity for you to send a message to the people you serve today. But the people that you don’t want to be advocating for in the future, it’s something I just don’t want to, I don’t want to leave on the table, I want to give you a chance to do that. Because, you know, please, please, please don’t need Survivor Corp, what we know of is a very random virus that can infect people, different ways, in different times, in different time periods, unexpectedly. And I think that’s a very factual way of putting things forward, it’s not fear that you’re going to die, it’s not you’re going to get sick, it’s that you don’t know what’s going to happen. And it’s not predictable. And you could be young, you could be fit, you can be a lot of different things. You could think you’ve got a mild case; you could think you’re not.
I would actually argue that the younger and fitter you are, the more susceptible you are to long COVID, actually.
That does appear to be the case in at least one version of how things are happening. And we know that vaccines are not perfect. And we know that masks aren’t perfect. And we know that other measures aren’t perfect. But we do know that in combination, they get a lot more perfect.
Right, that’s why we need to go back to that old model the Swiss cheese that picture that we looked at 1000 times of the day, you know you’re on one side, the viruses on the other. And how many layers of Swiss cheese can you put in between you and the virus to protect yourself knowing that every single layer is going to have holes in it? That the vaccine is the thickest layer with the least number of holes, they still be masked, it still needs social distancing, and everything else.
So the latest data we have is that even with Delta, there is an eight to one difference in your likelihood of getting diagnosed with COVID. If you’ve taken the vaccine, even with Delta, and those numbers may change as we learn more. And everyone, you know, I think emphasizes does there’s this narrative, which is understandable, but a bit troubling, which is this massive benefit of reducing hospitalizations and deaths. And I think what you’ve demonstrated today in this conversation, is that we have to do everything we can to prevent people from thinking that a case of COVID is harmless, because it’s not necessarily going to be harmless.
Diana Berrent 52:21
I can’t agree more. I mean, this is what I say every day all day long, is that I want to put myself out of business, I don’t want any more members of this group. This is not a group you want to be in. And you have no idea what your outcome is going to be and even a there is no such thing as a mild case of COVID. Because we don’t know what the long-term ramifications are. I fear for my children. I mean, what if in 10 years, we have a rash of 30-year old’s with early onset dementia, when we know with like, we’ve been talking about the neurological aspects of COVID. And how it causes brain damage, there’s reason to believe that with the Delta variant because of the higher viral load and because it congregates in the nose and mouth more than in the respiratory system that it is more likely to cross the blood brain barrier and cause more neurological damage than the previous strains.
And the best argument to be made is, look, you know, when if you’re 25 tell the 25-year-old that they’re going to end up on a ventilator. Come on, we were all 25 once you know, if you’re 25, you think you’re invincible, you’re immortal, right? And that, look, I was 25 and still would’ve gotten the vaccine, but I thought I was invincible and immortal too. But you know what? It’s not a matter of just ending up on a ventilator or dying. You can have a mild or even an asymptomatic case. And if you’re 25, do you really want to end up with erectile dysfunction, never being able to go to the gym again, losing your teeth. I mean, those are all considered extremely mild, according to the CDC. When they say mild? That is not our definition of mild, I don’t consider end date organ damage mild, I don’t consider encephalitis mild.
Diana Berrent 54:12
And I can tell you stories that would bring tears to your eyes about all these college athletes who are now in wheelchairs. Who cannot walk across the room. And those were considered mild cases. And the younger you are, the healthier you are, the more robust your immune system is. Yeah, it might find out you ending up in the hospital but it is more likely that you will end up with this horrible panoply of symptoms, you know long term symptoms as well from COVID. These long lasting you know, my 19-year-old niece is still on an inhaler, a year and a half after her incredibly mild case. You know, I can’t count the number of people, you know, you want your teeth to fall out, you want to have hearing loss, vision loss, COVID onset diabetes, again, all considered mild. But those are the real hazards that you are facing by getting an even an asymptomatic case of COVID.
So get vaccinated.
Get vaccinated, keep on masking, isolate, use every tool in your toolbox. And remember also that nobody under the age of 12 has been vaccinated, nobody. And there are so many people who would love to get vaccinated, but they can’t because they’re immunocompromised or whatever is their situation. And by you even being vaccinated can be a carrier. So keep on wearing your mask not just to protect you, but to protect everyone else is well, we live in a society where we need to have a bit more mutual compassion, there’s a social pact that we make, and we are not living by it. And we also owe a duty to the people who are left behind who have survived this virus but are far from having recovered. You know, we as American if COVID was our war, these are our veterans. And as Americans, we do not leave our comrades on the battlefield. That is not who we are as a people.
Andy Slavitt 56:18
Let me close on a kind of slightly more personal note, you know, a lot of what you’re doing takes a lot of courage. I mean, I could hear it in your voice, a lot of unwillingness to accept the superficial answer and get to the bottom, and incredible ability to just array A bunch of things together at a time when there are very long odds. And there are historical periods in our country than our world, when people took stuff on it gets incredible odds. Sometimes they didn’t get it done in their lifetime. But we look back and say, this person fought for suffrage, or they fought for the rights of indigenous people, or they did they advocated for other things. And there are some that did at a time when it was incredibly hard when there was nothing there. They the Pioneer the whole thing that takes a special kind of person. I’m just curious if you’re able to look within yourself and say, what is it that is causing you to do this? And how does it feel to be able to do this?
Look, I think that it can’t, you know, I think it might take more to figure out like, sort of as a person what led me to this. But in terms of the situation, remember, I survived. Remember that I had the Tylenol and Gatorade kind when everyone else was on a ventilator. And I felt like there but for the grace of God goes I and I did not start Survivor Corps as a patient advocacy group, I started it in, I thought that it was going to be the Peace Corps of our generation. That’s why I called it Survivor Corps. Because not only could we as survivors, donate our plasma, and connect with science and support science by engaging in every trial and study for which we qualified. I thought at the time that the presumption of a period of immunity would let us actually volunteer and help out when there was a lack of PP, because we wouldn’t need it and we drain on it, we would be able to go get groceries for the elderly, who we didn’t want going into grocery stores at the time.
Diana Berrent 58:26
I thought of it as being a service organization at first. And we have morphed because I think that there is great power in not being a specialist and being able to take a step back and looking at all the pieces and seeing what just doesn’t make sense. And what needs to be done and where the gaps are. And realizing that, you know, I think that having such a front row seat to this pandemic was watching the sausage being made was horrifying. And realizing that there were so many gaps and that the government and private industry were coming together and failing the American people. And if it took a few months to do it on the side, I didn’t there was it wasn’t a conscious decision. It just felt that how could you not? I mean, how could I be one of the first survivors and not take that role extraordinarily seriously. I mean, I knew that I was going to be the first of many, I had no idea of how many.
Right. Well, Diana, thank you for sharing with us. Thank you for your fight and what lies ahead. I can tell you that of the many people who listen to the show. I promise you that there are lots and lots of people who write at this very moment I’m not […] you go girl, or whatever it is that they would say, and are right behind you. So appreciative of your work.
Diana Berrent 1:00:08
I feel it, I feel I feel the hands at my back. And I am also extraordinarily lucky. Also I’m feeling okay. And most people with long COVID are not recovered. I’m one of the few and I’m extremely lucky. And so it is my responsibility to advocate on behalf of all these people who can’t, they can’t do it, they can’t even get out of bed. And it’s an honor of a lifetime to be able to affect change and to step in during a moment of national crisis, especially when you don’t wear a white coat.
Well, you know, many people don’t, don’t always find that what they believe to be their purpose. And I can tell you get your purpose and you are running, running hard with it. So thank you.
Okay, did everybody break a sweat? Boy, it felt a lot like the Frank Luntz interviewed me once which is so raw and emotional. There have been some absolutely incredible episodes this season. I know I’m the host, so forth. So a little bit stupid saying that but just some real surprises. If you haven’t. Go back and listen to Frank Luntz. Go back and listen to the Facebook episode, go listen to the episode with the Surgeon General listen to the episode with scientists Scott Gottlieb and Eric Topol listen to of course, the episode that we just did on schools and going back to school. Just so fortunate, but let me tell you about the next three episodes because they are going to also rock. Alright, on Wednesday, Jennifer Nguzo, the epidemiologist extraordinaire from Johns Hopkins, we’re going to talk about Delta and breakthrough cases, we’re going to get into the science and epidemiology of breakthrough cases.
It is a really, really useful episode. Then, next week, two big critical episodes. The first is on the FDA and the FDA reporting system. There’s and what the FDA is about to do and about to improve and in what order. It’s a former FDA Commissioner Mark McClellan. He’s been on the show before he’s an excellent friend is a very smart person. You’ll enjoy that show. And then that next Wednesday, that Wednesday, after that, you’re really gonna want to hear my conversation with Jeremy Farrar, Jeremy Farrar gives probably the best lay down of what’s going on in the global situation and how it’s impacting us. And it’s something we don’t talk nearly enough about. So have a great couple days. We’ll be speaking to you again, Wednesday.
Thanks for listening to IN THE BUBBLE. Hope you rate us highly. We’re a production of Lemonada Media. Kryssy Pease and Alex McOwen produced the show. Our mix is by Ivan Kuraev. Jessica Cordova Kramer and Stephanie Wittels Wachs still rule our lives and executive produced the show. And our theme was composed by Dan Molad and Oliver Hill, and additional music by Ivan Kuraev. You can find out more about our show on social media at @LemonadaMedia. And you can find me at @ASlavitt on Twitter or at @AndySlavitt on Instagram. If you like what you heard today, most importantly, please tell your friends to come listen and please stay safe, share some joy and we will get through this together.