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Dr. Deborah Birx, Former White House Coronavirus Response Coordinator Moderator: Deena Shakir, Lux Capital

Brainstorm Health 2023 - Fighting Pandemics: Why The Private Sector And Government Must Work Hand In Glove 

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Why The Private Sector And Government Must Work Together

Fighting Pandemics: Why The Private Sector And Government Must Work Hand In Glove 

I am very excited to introduce our next guest. One of the best known voices to emerge during the early days of the pandemic. If you don't recognize her, you surely will. As soon as soon as she comes on stage, Dr Deborah Burkes, globally known for her work as the White House Coronavirus response coordinator was truly a central figure to so many us in those early days, a very familiar presence at White House press briefings. But her work started well before COVID-19, I was lucky enough to sit next to her during dinner last night and heard about her experiences dealing with epidemics with infectious disease, with HIV AIDS, immunology, vaccine research and global health. She has worked in many locations all over the world and I'll let her share a bit more about how those experiences translated into the work that she did here at home in the US. Dr Burkes knows firsthand the value of public, private partnerships in science and in health. There are critical aspects of battling the pandemic, certainly in R and D in the development of vaccines, but in everything that came afterwards and that continues to come. So please join me in welcoming Dr Deborah Burt today for a conversation on how public private partnerships can help us prepare for the next pandemic. So good to next to you again. I know we're kind of matching but not exactly just keeping everybody awake out there. We got the brightness memo, keeping you awake. So, Doctor Burke, we there was so much we talked about last night and I'd love to share that wisdom with um with the audience today. But let's start with this. How can we prepare for the next global pandemic? We know it's coming. So we're not ready. I mean, we have to start with that. I would like to start with, where are we today? And we're not ready. Um In fact, I worry that we've drifted even further back than we were in 2019. Um And when people say to me, well, why didn't you follow the pandemic preparedness plan? Well, because it failed in the first week and there were no private sector in that pandemic preparedness plan. There was no private sector in planning for the next plan pandemic. So what I've been pushing for is getting the private sector at the table during these we have training sessions yearly where we pretend there's a pandemic and the all the federal agencies get together. But I want to make it very clear that the group that saved Americans was the private sector. And so to not have the private sector at the table makes it sure that we're not going to be prepared because when I came into the White House on too March, there were no tests. The only tests were being done through the public health laboratories. Now, I know you probably know where your public health laboratory is in your States but patients don't and they don't go to the public health laboratory to get diagnosed. The problem was the tests were unique to the equipment in the public health laboratory. That equipment doesn't exist in hospitals, urgent care or any of the large lab core quest or any of that. So on the third day I called, I had a list of the private sector groups I needed to meet with the great thing about the White House when you call people come. But I was expecting to see the lab developers. I walked into a room of the Ceo of Roche Abbot and Logic and and said to them, we need tests within days and they all delivered. So we went from less than 2000 tests a day to 20,000 to 200,000 to two million tests a day. In less than eight months, we talk a lot about the vaccine but I wanted you to know that behind the scenes, the private sector was getting us tests, the private sector was getting us um supplies. The private sector completely rearranged their supply chain based on data that we were giving them. Not asking questions. But I was just, I was stunned at how much help I got. No one ever told me. No, that's amazing. Not the whole time. We talked a bit last night as well about some of your work around the world and the lessons that you learned from that and how they apply to what, what you did in the White House. Tell us a little bit more about some of the work you did in Africa, for example, around infectious disease. And what surprised you when you went into the White House. So we had spent the last 20 years battling HIV TB and malaria. And when I first started working in Africa in 1998 there was syndromic management for everything. And so if you had a fever, you got treated for malaria. If it was a malarious region, if you didn't respond, you got treated for bacterial pneumonia. If you didn't respond, people assumed you had AIDS and there was no treatment. So the whole care paradigm stopped there. So what we first had to do is bring testing so that every fever was definitively diagnosed. So in Africa, if someone comes to the clinic, we can do definitive diagnosis of the infectious diseases that are circulating in that community at the point of care, no matter where you live, then I came back to the United States and we have data on every 65,000 sites go to pet dot gov, you'll see all of our data and every single client, we serve 19 million clients on treatment. That's your taxpayer dollars. Um So we ran it very much like a private sector business where we were tracking outcomes and impact and holding all of us accountable. And so we had data systems where I could see every clinic and how, whether the patients that were being seen there were virally suppressed as an indicator of quality. So I come back to the United States. I say, where's the data? And I get an Excel spreadsheet that says the state has 600 cases. I was like, well, what were they yesterday? How is it increasing? Where is the? I said, certainly there must be, is there a secret database? I have data on everything in Africa and they were like, no, there isn't. This is it. And then they gave me the line which I really believe is a line that the States and local governments have to give you permission. The state and local governments wanted data too. And so when we couldn't get the data, I asked the equipment, the Abbots, the Roche to send me their equipment data every night. And here they are working their fingers to the bone, getting me more tests. And I'm asking them for nightly data and they sent it to me. So I could see every single hospital equipment because they are always can see their equipment. So we're not taking advantage of what is there today? We could be getting, we could be telling communities how much flu, how much R S B, how much of this, how much of that for all community acquired infectious diseases is, I'm not talking about looking at the hospital acquired infectious diseases. I know there's sensitivity there, but we have the equipment that's molecularly measuring all of these diseases and it could be provided. Now, you don't get all the demographics with that. But isn't that great because then no one will be complaining that you're stealing, you know, private information. So that group that sent us that data every night. And Abbott, we were able to see immediately the trend lines. And that's when I knew even though there were only 2000 people who had succumbed by the middle of March, that we were going to easily lose 100,000 Americans in that first eight weeks because you could see that 50% of the 50% of the patients coming to Columbia Hospital and getting tested had COVID. So, you know, because of the work that the private sector did, we were able to get complete visualization. And what I have always believed is data is the place where everybody can start from and everybody can agree on and it's not controversial. So I always start with data no matter what level of person I'm presenting to. But if you don't have any data and you can't see change over time and every hour matters, you have to really bring that together. And the private sector helped us. And because of my experience in Africa, I had worked with J and J and they had helped me, I had worked with talent and they had helped me with the data system. So I worry every day, if, what if I hadn't come back and known you all because these were the individuals who came to help me and dropped everything to help me. And I think when you've looked at the great thing, I think that I was able to bring is a sense of talking to the community, but also working in resource limited settings. And I, I just Mason Henry shine cardinal hell. All of you said to us, tell us where you need supplies, we'll do it. And so they were sending supplies to safety net hospitals and losing the money by not sending it to their high payers. And I think what I've always tried to convey to the American public over the last three years is people have really helped and they dropped all of the pretense of competition. And they just said, how can we help? And I find that all the time. And so when people say, oh, they won't do it, I always say to him, did you ask them rather than you know, because I found so in May, I'll stop then and you can ask your next question in May. Um we were trying to get hospital data because it was crucial to know who was being admitted. How many people were being admitted? What were their ages? I was getting that data from Europe every night, but I couldn't get it out of the United States and everybody told me the hospitals wouldn't do it. Um but I called the hospitals and by that Friday, I had 93% of our 6000 hospitals reporting. So this is what I think people in the federal government believe that the private sector is not there to help. But the private sector helped me from test to data with teer to organizing supplies with all of our large health care suppliers to of course, making vaccines monoclonal antibodies and that saved millions of American lives. But I think to me, the private sector and across the board is really an unsung hero. I want to talk about misinformation, which is uh another important topic in the context of public health, global health and certainly in the context of this pandemic. Um and it's, it's an area in which, you know, on the one hand, data is empirical and should be clear and we can look at the data and yet mistruth run rampant. What was your experience dealing with the plethora of misinformation out there on the COVID pandemic? So every pandemic has misinformation and and for those of you who are closer to my age than many of you that I see in the audience, you're closer to my age. You remember in the eighties, the misinformation about HIV about transmission about cures, about how you could get it, about how it was spread. All misinformation that also was very prevalent in sub-saharan Africa. Lots of its information about cures how it's transmitted. And I always found that the way you combat it again is making data transparent. And though I really worked hard to get that and probably many of you didn't go there. But the tracker project was super helpful, Hopkins was helpful New York Times and getting information out there. But HHS we were able to get a full profile of the country put up and change daily so that people could see not only what was happening but what we were predicting to happen. And I think if you transparent with the data to the community, the community is incredibly smart and we underestimate the community's ability to understand nuance. And I think they can, I think no matter where I work, they have and you need them as a partner. So data making data, data, understandable and available and showing your work, no guidelines should go out without the data justification. That shows why you're making that recommendation. We wrote a weekly report to every single governor with all of their data showing why we were making these recommendations. I think that is absolutely critical that the public can see your work and understand why you are saying what you're saying and not make it into a black box. Uh We have just a few minutes left so I want to turn it over to the audience. If we have any questions, there should be a microphone passed around and I see one right here. If you could please introduce yourself and, and ask your question, Dixon sister love in Atlanta and in Johannesburg. Hey there. Hi. So started sister love empowering women. Thank you. So thank you for acknowledging the need to partner with communities. Um We spend a lot of time talking about uh public, private partnerships and even in the response to a pandemic, the role of getting the information, the education, uh even dealing with some of that uh misinformation and disinformation fell to communities, especially those of us in sexual reproductive health and HIV for so long. Can you talk a little bit more about the success of the work that you've done in Africa in achieving some amazing milestones in countries that we thought had intractable diseases that are doing far better than we are here at home. And I would say larger because you built a system that engaged community partners. Can you talk a little more about? So just as you know, medicine means nothing without the client um community, I think we forget in pandemic preparedness. It says prepare, detect, we failed to detect and then it says, respond and you cannot respond without engagement in the community. And I think that's why I left the White House and was on the road for almost eight months. Community matters the most. And you can't ignore their voices. And I think there's a lot of people who ignore community voices and they are pointing and saying, if you're in a red state, you're dying from COVID because you didn't get vaccinated and you didn't get this and you didn't get that. Well, let me tell you why they died. They died because there was no health care. There, there is no health care in our rural America. None, zero, there's dollar stores. There's no health care. 15% of America has nothing. Tribal nations, the majority have nothing. And we as Americans need to recognize this, speak to it, give voice to it and help our community members be seen by our federal and local government. Thank you so much, Doctor S we're getting the signal. Although I wish I could talk to you for another hour. But thank you. And this was lovely. It was great meeting all of you. Thank you so much. Thank you.

Cynthia Adinig details the struggles of living with the chronic illness.

Life with long COVID: “I remember waking up every day surprised that I was alive”

Health

Life with long COVID

Life with long COVID: “I remember waking up every day surprised that I was alive”


I remember waking up everyday surprised that I was alive and that was my reality for the first year with long covid everyday I would wake up surprised to still be here. Okay in March 2020 I got Covid very, very mild Covid and just sniffles. Maybe felt like a light sinus infection. But after a couple of days, symptoms went away and everything was felt like normal and then you fast forward to May. I was eating my mother's mother's Day, I was eating my mother's Day dinner, I got lightheaded, dizzy. Um my heart was racing, was really, really scary. I couldn't chew, I couldn't swallow. And I just, I went to sit down on the bed and figure out, try to figure out what was wrong. And I just happened to stumble on a facebook post about people who got sick from Covid and suddenly have like so many symptoms, so many things wrong with them. And I'm like, oh my goodness, that's me. That has to be what it is. Long. Covid is a constellation of symptoms that persists long after a person has tested positive for covid and gotten over the acute phase of Covid. It's a constellation of symptoms, including cognitive symptoms, things like brain fog. People describe some neurological symptoms, numbness or tingling fatigue, generally speaking, and other strange symptoms that are really beginning to come into focus. Some people describe, for example, buzzing under the skin. I developed an biology to all food and water. So I need anti histamines to eat or drink every single day. That is one of the most disruptive symptoms that I have present day. Currently, I still need for anti histamines twice a day just to eat and drink a handful of foods. We really don't know what proportion of people who get covid go and have long covid. But there are studies that suggest that anywhere from 10 to 30% of people will go on to have symptoms that last beyond three months after covid. In order to determine fully what the risk factors are. For long covid. We need longitudinal cohorts, which means we need groups of people who will follow forward in time. See people with people without covid and see who gets symptoms and then be able to characterize who is more likely long. Covid has absolutely changed everything about how I go about my day. I have to wake up in the morning and take stock of what my symptoms are. My throat feels like it's clothing as my throat feels like it's dry or my eyes puffy. Um do my legs feel strong as my heart racing. Those are all the things that I take stock in before I even step out of the bed. I had to move because of long covid because I'm so sensitive to smell. And we were in an apartment. The smell of my neighbors cooking was um causing me to have reaction so severe that I would end up in the er And we tried really really really really hard by adding the air purifiers by adding the fans by having me spend most of the day double masked by getting a special allergy mask. So that's why we moved specifically to a town home so that no neighbor smells are in this space. And we specifically picked a spot that had wood floors so that it has the least amount of allergens as possible. Got all new furniture on the main floor so that all the dust, pollen, everything from the old space is not in the new space. One of the toughest challenges aside from the symptoms themselves, impairing life functions is the uncertainty. Um, it's not like there's a textbook that explains the natural history or the life course and it's variable for each individual. So that period of sustained uncertainty. And the question I hear most often is, you know, when am I going to get better when I can feel more like myself? Um that is really, really devastating for people being sick. And this, this stick overnight was a real struggle for me because I was a very involved person. I was head of hospitality at my church, volunteering for multiple nonprofits. I ran two businesses and learned to stop engaging myself and comparatively to where I was pre covid, it was not the right baseline. My comparing myself to that I was keeping myself in a dark space of grief and I wasn't seeing the winds because I was so focused on on my life being the way it was before and being in a long covid support group is exactly what helped me um during those times when I was hospitalized, you know, doing those zooms with them, doing those interactions in our chat room. Those private messages that we send back and forth to each other really have helped me navigate and not go to a dark space that I see others who are not tapped into it. The work will go into, it's really heartbreaking to see the despair and heartache that people have when they go from being somebody who is able to work and go out and see friends and not being able to do those things that sustain and fulfill you uh can be very painful if you are experiencing symptoms or no loved one to really be on the lookout for symptoms of mental health. These are disruptions in sleep, appetite, interest and energy concentration, anxiety as well. One of the most devastating consequences of mental illness is suicide recognizing um suicidal thoughts and behaviors um can be lifesaving. Um if you see somebody exhibiting these symptoms reach out, um connect them with care, it really can save lives. I have a son. His name is Aiden and he is six years old. By the time he was three, he was known for being a math prodigy and he had been working throughout the pandemic to learn chess and he's currently training to break the record for youngest friend, master of chess in the world is what he's training for right now. He also has long covid. He has a very, very mildly and in the beginning when he got sick, um, he got a little bit of fatigue. Two months ago, he started experiencing long covid symptoms again was a shock to me. He woke up one morning, came downstairs and said, Mommy, I can hardly see my, my eyes are blurry. I feel like I'm having double heartbeats. I started monitoring his heart rate, making sure he's not over doing it. He's a kid though he wants to learn, wants to learn, he wants to play. But again, mental exertion is just as strenuous as physical exertion when it comes to long covid symptoms. So he's not able to do this child prodigy things that he used to doing like learning really hard math or you know, intensely doing three hours of chess games. And so that has been difficult and and getting him to understand what his new normal is. Now there are many open questions about covid and perhaps one of the key questions is why does someone go on to get long covid While somebody else was not the short answer is, we don't know, we do know that people who have multiple pre existing illnesses who are at risk for more severe covid are more likely to go on to get some covid. We do know that those who have severe covid are more likely to have long covid. Those who don't have severe covid, there is no new pathogen. There is no new virus. What there are what there is instead is a set of symptoms that requires people reporting symptoms. That requires consistent reporting of those symptoms. And it requires studies that compares people who look like each other. In terms of the severity of covid, they had to figure out what it is that people actually have consistently that we can call long covid and how long it lasts. One of the things that I have really wrestled with through my journey of long Covid was the power that the medical professionals to interact with me have in the trajectory of my life. And I feel as if medical professionals have grown numb to just how much they can change. Help save hurt a life. You listening for five more minutes could be the difference between someone with long covid ending their life and someone with long covid recovering just one doctor, just one doctor in my in my admissions, changed my life and set me on the path from dying to living

Dr. Angela Rasmussen explains the ins and outs of virus mutation.

Variants: There’s only one way to stop them from being created

Variants: Only one way to stop them from being created

So every time a virus replicates inside a host it makes mistakes while it's copying its genetic material. So a variant is any virus that has acquired mutations, so little genetic changes in the case of viruses, these mutations are not significant enough that it's an entirely new virus. Um but it is a little bit genetically different than the viruses that came before. It. Sometimes those mutations have no effect. Sometimes they are actually a disadvantage for the virus, but sometimes they provide the virus with an advantage. And so that means that that mutation will be positively selected for, it will remain in the new viruses that are made eventually they will out compete the old viruses and a new variant is born. So a variant is not necessarily worse than the virus that came before. It. It usually just has some kind of advantage for the virus and that really makes sense given what viruses are. They're just little biological machines that are programmed to make more viruses. So a variant of interest is a new variant that has come up in perhaps a region or a given population that has begun to circulate but it's not clear if it is worse in terms of its transmissibility or its severity or its immune evasion. A variant of concern is a variant of interest that has actually crossed one of four all three of those thresholds. So for example, omicron starts circulating. People observe an increase in in the omicron variant but they don't know if it's going to become the dominant variants. Um And then it does become the dominant variant it graduates from a variant of interest into a variant of concern. If you want to stop variants, you gotta stop transmission. You gotta stop viral replication every time an RNA virus like SARS coronavirus two copies of the genome, it will make mistakes and it will acquire mutations. So if you want to reduce the chances that those mutations are going to be in a place that gives the virus an advantage, make sure that you aren't getting the virus to replicate, which means reducing transmission, reducing infections, uh reducing the overall burden at the population level of virus that's circulating around. You don't want variants, take away a virus's hosts.

Dr. Georges Benjamin of the American Public Health Association explains.

Crash Course: When a pandemic becomes endemic 

I believe that um the pandemic is still here but that we are absolutely transitioning to another stage. Mhm. Well, you know, an endemic disease as a disease that's established in the community uh such that we have really some understanding of what it does, how long it's going to be around when it occurs, you know, fall, summer, winter, whatever examples of endemic diseases, hepatitis, A, hepatitis B, malaria, um Syphilis. Um um HIV AIDS of course. But people often forget that endemic diseases are not just infectious diseases. So heart disease, chronic obstructive pulmonary disease, cancer, all of those things can also be endemic diseases. An endemic disease can also still be a pandemic. A pandemic is characterized by scope. So it's across continents, Across countries we know that a pandemic has shifted to an endemic stage when we have a better understanding of the pattern of the disease really who is really infects. Um and kind of having some understanding where it's going and usually it's been around for you know, several months for a few years. I think the COVID-19 pandemic um it's still here. It is not reached um endemic stages yet. But it is transitioning and I believe that's probably it's logical future but it still remains to be seen. Mm hmm.

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