 Good morning and a warm welcome to the 32nd annual Dorothy J. McLean Fellows Conference here at the University of Chicago. This conference remembers Dorothy Jean McLean, who helped create the McLean Center and was deeply committed to its work. This annual Fellows Conference is the McLean Center's signature event. Dorothy McLean believed that education was the best way to improve the world and throughout her life she supported many leading educational institutions including Colorado College, Dartmouth, Yale, and the University of Chicago. I wish to acknowledge and thank her son Barry McLean who's with us today and to also remember his late wife Mary Ann McLean. Together Barry and Mary Ann served for 25 years as co-chairs of the McLean Center's advisory board. We all owe a great debt to Barry and to the McLean family for their continuing support of the Center and of this annual conference. I also want to thank Rachel Kohler, the McLean Center's chair of the board for her outstanding leadership and support in guiding the Center's vision for the future. Over the next two days the conference will feature more than 35 lectures divided into seven panels on important topics in clinical medical ethics. 11 of these lectures will be this afternoon and will focus on ethical issues related to the COVID-19 pandemic. All of the conference speakers are either current or former McLean Center Fellows, or current or former McLean Center faculty. After each of the seven panels, we'll have a panel discussion among the speakers with questions and answers from the audience. I would like to ask the audience with us on virtual Zoom to please write your questions using the Q&A feature rather than the chat feature of the Zoom screen. Your name as questionnaire will automatically appear but please include the name of your home institution before you write your question. Clinical medical ethics, which we started here at the University of Chicago in 1972, is a central component of clinical care that must be practiced and applied by licensed clinicians in their routine daily encounters with patients. The goals of clinical ethics are to improve patient care and outcomes by helping physicians, nurses, and other health professionals identify and respond to clinical ethical challenges that arise often in the care of patients. Clinical medical ethics addresses clinical issues such as truth-telling, informed consent, confidentiality, and when necessary, surrogate decision-making and end-of-life care and also encourages personal, humane, compassionate, and respectful interactions between doctors and patients. Over time, the practice of clinical medical ethics has become the professional and legal standard of care in the United States. The McLean Center for Clinical Medical Ethics has a fellowship program which is the oldest, largest, and in my own humble opinion the most successful clinical ethics fellowship training program in the world. Since beginning the fellowship in 1985, the Center has trained more than 500 fellows including 380 physicians. Many graduates of the fellowship program including more than 80 surgeons have become academic leaders and mentors who advance scholarship in clinical medical ethics and who are committed to improving the technical, compassionate, and ethical care of patients worldwide. Graduates of the McLean Center have served as directors of more than 45 ethics programs, believe this or not in the United States, Canada, South America, Europe, Africa, Australia, South Korea, and China. McLean Center fellowship graduates have held faculty appointments at more than 70 university medical programs in the US and Canada. More than 25 of the fellowship graduates have held endowed university professorships. Former fellows at the McLean Center have written more than 200 books and thousands of peer-reviewed journal articles. This year the McLean Center is training fellows using Zoom and the number of fellows is the largest number ever, 34 fellows who have clinical backgrounds in medicine, surgery, pediatrics, obstetrics and gynecology, psychiatry, nursing, as well as in law and the humanities. The current McLean fellows are affiliated with the University of Chicago, Northwestern University, Lurie Children's Hospital, Rush Medical College, Loyola University, as well as distant universities such as UCLA, Duke, University of Alabama at Birmingham, University of Wisconsin and Madison, and the Uniformed Service University of Health Services in Washington, D.C. I would also like to call your attention to the McLean Center Prize in Clinical Ethics. This year's prize will be awarded tomorrow morning on Saturday at about 9.30 a.m. by Dr. Kenneth Polanski, the Dean of the University of Chicago Biological Sciences Division and the Pritzker School of Medicine. I'm almost embarrassed to say because I may be stepping down after 37 years as serving as the founding director of the McLean Center that I was named the winner of this year's prize. As a member of the university faculty, I, of course, declined any monetary award for winning the prize. This honor stands on its own as a kind and generous recognition of my years of commitment to the McLean Center. I hope you will all be able to attend tomorrow's session and join me as I offer my acceptance speech after Dean Polanski's presentation of the award. Most importantly, I want to recognize our outstanding advisory board that includes Rachel Kohler as chair, K. Bucksbaum, Craig Dusheswa, Stan and Ann Dudley Goldblatt, Nancy Foster, Dean Guestel, Connie and Dennis Keller, Duncan McLean, Bob Murley, Carol Siegel, Brian Traubert, and, of course, Barry McLean. Finally, I want to acknowledge and thank the McLean Center associate directors. They are Peter Angelos, Lainey Ross, Marshall Chin, and Monica Peake, as well as the McLean Center faculty and the McLean Fellows for all their great work and for their participation in this year's McLean Center conference. With that behind us, I would now like to introduce our first moderator today, Dr. Marshall Chin, who will moderate a panel entitled Health Care Disparities. Dr. Chin is the Richard Perillo family professor of health care ethics and an associate director of the McLean Center. Dr. Chin is professor of medicine with extensive experience caring for vulnerable patients with chronic diseases and is a national expert on health care disparities. Marshall Chin is an associate chief and director of research for the section of general internal medicine as well as the director of the Chicago Center for Diabetes Translational Research. Dr. Chin also leads initiatives to improve disparities in health care on a national level, both with the Merck Foundation and the Robert Wood Johnson Foundation. During the past three years, Marshall has created a new field of improvisation comedy in medicine. In January 2020, Marshall published a great article in JAMA entitled, I quote here, Lessons from Improv Comedy to Reduce Health Disparities. End quote. The article has now received more than 500,000 Twitter responses. Additionally, Dr. Chin was one of the physicians nationwide elected in 2017 to the prestigious National Academy of Medicine. Marshall will moderate today's panel on health care disparities. Speakers for this opening session will include Marshall himself, Drs. Monica Peake, Jason Carlawish, Stacey Lindow, and will be followed by a panel discussion and questions from the audience. Again, I recommend that you put the questions into the Q&A section of the Zoom link rather than the chat section. Please join me at this time in giving a warm welcome to the moderator and first speaker, Dr. Marshall Chin. Thank you. Thanks very much, Mark, for the generous introduction. And it's great to be part of this McLean conference and a very special conference for all of us given that we'll all be celebrating your well-deserved winning in the McLean Prize. It's about time, given all of your many accomplishments over the years as an international leader in bioethics. So I have the honor of moderating the first panel and we have a terrific set of panelists. I have some outstanding colleagues, Monica Peake, Jason Carlawish, and Stacey Lindow on the topic of health care disparities. We're each going to give about 15-minute talk and we'll hold questions until the end so we'll have a half-hour of uninterrupted question answers and panel discussion. First slide, Eric. So I have a talk that has the unusual title Japanese Cherry Blossoms, COVID-19 and Hope for All. As the first speaker of this panel and of the conference, I'm hoping to in some way set a context for the overall panel and conference. Many of the talks of this conference do cover aspects of COVID-19 and equity. And so I'll be giving some general context as a frame. So 2020 has been a difficult year for many or all of us. One of the major stresses has been COVID-19. And so back in May of 2020, The New York Times Magazine published a terrific article about how safe net clinics, fairly qualified health centers were coping with COVID-19 and caring for patients and patients with COVID. And they focused on the story of Kellen Lord, which is an FQHC, fairly qualified health center in New York City that specializes in care of LGBTQ populations. This is a picture from the article showing one of the health care workers at Kellen Lord. And so the reporter, Matataya Schwartz, he interviewed me as part of the article and the quote they picked was the following. It's the double whammy of a medical hit and then the economic one. If you're a frontline worker, you have to drive that bus or that Uber. You can't socially distance because your housing is too crowded. Then if you get sick, you can't get into your CHC because the centers are letting go of folks. The U.S. health care system suffers from a chronically under-resourced safe net. So when something like COVID hits, you have a lot of people who get hurt. And I think for all of us, we're concerned about our patients. We're concerned about our communities. We have concerns about our own personal risks and the risks of our colleagues. And we have concerns for the risks of our friends and families. This is a picture that I took. It's in a tunnel. It's a tunnel that connects the Museum of Science and Ministry to Promontory Point. So it's in Hyde Park and you may remember that there's that bridge you walk under. And it highlights in some ways the dual stresses. There's the social distancing and the COVID pandemic. And then represent the Black Lives Matter movement. And we've had then over the past year then with all the terrible examples of African American men, of other persons of color suffering and dying from police brutality and increased public awareness of systemic racism and how that infiltrates all aspects of society. The Department of Medicine at the University of Chicago Diversity Committee wrote a blog piece in Kevin MD which was led by Monica Vela. And Monica really did the bulk of the writing. It was a beautifully written piece that Monica wrote. And towards the beginning of the blog piece she writes, over the last few months we have faced a relentless pandemic and seen humans rising to serve the most critically ill. However, we have also borne witness to the relentless evidence of health and healthcare disparities during our time in our country's history in which the discourse around race, nationality, gender, sex, sexual orientation, class, and religion have reached a fever pitch of discord. We have become increasingly frustrated, sad, and exhausted from witnessing the relentless violence marching unfettered across our country for generations. So again she says, we have become increasingly frustrated, sad, and exhausted. And I think that's to the reality that it's been hit after hit this particular year. I joined Twitter about three months ago and so that's an additional source of information and you just sort of see it in many of the tweets of the healthcare providers, this sense of exhaustion and this new wave of COVID hitting, really a sense of concern and even despair at times. And so it was during March and so I lived my family in Hyde Park and like all of you, we're going through this period of sort of searching and despair and looking for hope. And my wife and I would start a ritual where we would do a daily walk to the museum of science and industry area and you may remember on this particular side, the pond side or the water side of the museum, there's a beautiful set of Japanese cherry blossom trees and this was one of the most amazing years for the blossoms in Chicago. They lasted three weeks, which is the longest that we have seen them last and it was just incredible, the beauty of these cherry blossoms and we would walk every day. So we would see the evolution of these blossoms as they started as little buds and became ever more radiant and loosened in really just special and uplifting. And in Japanese haiku poetry, the cherry blossom is a metaphor for life, beautiful and ephemeral and ultimately withering and dying. And so in some ways, as we were doing these walks, I began to think of a parallel of the cherry blossoms as also being a metaphor for our country's response to COVID and some of the immediate policy and funding decisions. You may remember that when there was the hit and there was a financial hit to a lot of health organizations and there was just the overwhelming demand and the limited resources, there were a variety of healthcare, legislation and relief packages that were passed by Congress and the question then became in some ways, actually before that, I'll share this haiku poem. This is Joseph Busan who is one of the great Japanese poets of the Edo period drinking up the clouds, spews out cherry blossoms, Yoshino Mountain, when blows scatter and it dies, fallen petals falling, unable to resist the moonlight, sakura sakura, the fall in the dreams of Sleeping Beauty. So I'll come back to cherry blossoms at the end of the talk. So I was talking about how there have been these immediate care leave bills in terms of funding the healthcare system. So one of the big questions becomes, well, was there going to be more of the same, basically funding the status quo or true reform? Because with COVID, we saw that the people who were having the bulk of the disproportionate burden of morbidity tended to be obviously minorities, patients of a lower socioeconomic status. And so this question, should the goal of AAB to help the patients most adversely impacted by COVID-19 or to save the current healthcare system? Should the nation prop up the status quo or encourage the healthcare system better designed to address the complex medical and social needs of high-risk populations? Well, at least initially the answer was more the same. So for example, if access to care was a huge issue and it is a huge issue, well, you know, why didn't we just expand, for example, the ACA, the Medicare expansion? Or the initial set of funding that was done by the government, the CARES Act Provider Relief Act, largely find it more the same. So it was interviewed by Newsweek and I told them that the Centers for Medicare, Medicare Services Formulas appear to be designed to ensure that hospitals and large healthcare systems can maintain their bottom lines rather than guarantee the facilities in which vulnerable Americans to pen can keep their doors open. So I was inspired to write a commentary with the title of today's talk that's impressed the Annals of Family Medicine and I basically stressed three lessons. First, that there are proven roadmaps and processes for reducing healthcare disparities that already exist, and there are themes of successful interventions and we should implement them. A second lesson was that payment reform needs to create a business case for healthcare organizations through the rest of social terms of health and implement care interventions to reduce health disparities. And then third, we as a nation need to have hard conversations about whether we truly value the opportunity for everyone to have a healthy life and in the rest of the talk I'm going to concentrate upon this particular point about the national conversation and the first point about a little bit about the roadmap. So I recently invited to write an editorial for the journal BMJ Quality and Safety entitled advancing health equity and patient safety, a reckoning challenge and opportunity. And it gave me an opportunity to basically try to come up with a concise framework for advancing health equity which is here. I'm going to point out that I will not cover the far right of the slide which is payment reform that supports and incentivizes care transformation that advances health equity and cross-actual partnerships to address medical, social drivers of health, visual and structural drivers because in January as part of the McLean COVID seminar series, I'll have a whole hour to do a deep dive into these issues and these policy issues. So I won't talk about that today and we'll focus upon the rest of this diagram. So in brief, at the top there needs to be a committing to the mission of maximizing the health of diverse individuals and populations intentionally advancing health equity. The left side create a culture of equity. The right side implement a roadmap to reduce disparities. In between is the critical bridge that what it means if it works is that every worker knows how to operationalize advancing health equity in their daily jobs ultimately at the bottom improving individual and population health and improving health and health care equity. So I'll go through these individually. So first this issue of committing to the mission of maximizing health by diverse individuals and populations. You know, there's a lot of organizations that are coming up with statements saying that we're anti-racist or we're supportive equity. We want to reduce health disparities and that's great. The statements are coming out. In practice there needs to be hard conversations about what that means. One of my current projects involves working with seven teams. A team consists of a state medical agency, a Medicaid Medicare health plan and then frontline organizations like clinics and hospitals. And we found that it's taken like literally months for these groups even once they've agreed to work on equity really to basically have the hard conversations among what that means. So for example does it mean improving the care of disadvantaged population? Does it mean actually reducing the difference in outcomes between a more advanced and more disadvantaged population? Does it mean doing the hard look internally in terms of how much a given organization like ours is either part of the solution or part of the problem. All hard conversations that have to occur. The related point is that we have to intentionally advance health equity. When I talk to a lot of healthcare leaders I often hear well-meaning statements like we're already doing quality improvement. We're saving that organization as who we are. The shift from fee-for-service payment to value-based payment and alternative payment models will fix things. So there basically is this belief that well will you do a general type of intervention that it will naturally lead to the better result either through the free market principles or general quality improvement or general incentives. The problem is that this approach hasn't worked. This is the most recent national data 2018 our quality report to orient yourself the far left column of black patients, the far right Hispanic, the reference group are white patients and basically red is bad. These are where like the column in question that particular group is doing worse on quality metrics than the reference white group and you see there's a lot of red. So a lot of disparities have persisted over decades. So this is ideally intentionally in the invisible hands. We've talked about how well this belief that the invisible hand will lead to a better result. But the thing issue is that a rising tide does not necessarily lift all boats in that we know that tailored culturally tailored interventions are better and tend to be better for disparities working in production than generic interventions. And so to improve accurate outcomes, though a lot of organizations perceive it's easier to invest in general quality improvement approaches as possible as tailored approaches or they will intentionally or unintentionally erect barriers to access for marginalized populations. So for example you've heard a phenomenon of sherry picking so that you care for just the healthiest patients whether you're an insurance company or hospital or healthcare system. Famous quote from Peter Drucker, businessman culture east strategy for breakfast. So you could have wonderful tactics and strategies but if it's not the culture at your organization to prioritize equity it's not going to be done. Creating a culture of equity includes both understanding your own personal biases so it's often done in cultural humility classes and all. But then very importantly identifying the systematic structures that bias against and oppress marginalized populations. Last year at the McLean Center I gave a talk and I'll talk a little bit more about machine learning and artificial intelligence and biases and it was an example of a structural issue at University of Chicago and I'll get to that in a moment. At the same time this is a roadmap to reduce disparities where you identify disparity, do the root cause analysis and then design and implement interventions that address the root causes. And again we talked about this bridge and so the issue is that operationalization of advanced equity goes beyond interpersonal relations to each worker. It's to making sure that they know how to do their daily jobs with equity lens and then reform the structures in which they work. And I gave you that example of like the University of Chicago where they had developed a machine learning algorithm that tried to decrease the length of stay which if they had implemented it was biased. It would have led to allocation of more resources away from African-American patients to more affluent white patients. And eventually data analytics group actually was horrified by this and had now become national leaders in ways to practically use machine learning to advance self-equity. So it means there's a call to action locally and nationally for us and I know that Monica and Stacy and their talks will cover this and probably Jason also there's anchor institution principles. So for example, do we hire a diverse population? Do we serve the community? Do we have a living wage? Regionalization of scarce resources which I'm almost certain that Monica will talk about so I won't talk about that. And then advocacy for payment reform that supports and incentivizes care transformations that advance self-equity and cross-national partnerships that address medical and social drivers of health. So the cities of Osaka and Chicago created a wonderful garden of a phoenix that's right near the museum of science industry. It's a beautiful garden and they have three or four of these stone Toro lanterns which have a beauty and stone permanence that the withering cherry blossoms don't have. And just like the legend of the phoenix in Greek mythology shows that good can arise out of of destruction. I also believe that there is hope and that good can arise out of the COVID pandemic that we are in a situation where there is potentially great opportunities for systemic reform to address racism health equity and advanced health for all. In Japanese and Chinese culture the phoenix appears in times of virtue. And what it means then for is that for all of us it's not for us to take charge and to lead and do all that everyone can then to create the opportunities for everyone to have a healthy life and to address these issues of bias, racism and systemic structural inequities. So thank you very much and I will now introduce our next speaker who is my colleague and friend Dr. Monica Peek who is an associate professor of medicine at the University of Chicago and the international expert on improving shared decision making between clinicians and African-Americans with diabetes and other chronic conditions. One of the things that makes Monica unusual is that she's an incredible academic, incredible bioethicist, understands the African-American community incredibly well, a wonderful communicator, a policymaker and someone who wears her heart on her sleeve and she'll be talking about COVID-19 and disparities based upon academic work as well as some of her leadership work in the city and state on COVID-19 policy. Monica. Wonderful. Thank you so much for inviting me to be a part of this panel amongst friends who I admire so much and so I'm going to talk a bit about COVID disparities and how we might address those as a community. I'd like to have my slide. Here we go. All right. Here are my slides. Official title is Health Disparities in COVID-19 and Action Plan for Mitigating Disparities and so just going to acknowledge some of the areas in which I sit on the University at the McLean Center of the Chicago Center for Diabetes Translation Research, the Bucksbaum Institute for Clinical Excellence and the University of Chicago Medicine. So we have bits and pieces about the story of COVID disparities so when some of the first data about disparities hit Chicago was one of the first cities and so we know that Chicago was approximately 30% African-American but represented 72% of COVID deaths luckily within the first several months after that data came out because of the rapid response to the city that percentage had dropped to 42% of this. In Carolina 30% of the population is African-American but represented 51% of COVID deaths currently within California 39% of the patient is Latinx but Latinx but 61% of COVID deaths and within that state as with the rest of the country we know that race and class are co-mingled are inextricably linked so for census tracts that have low scores of a healthy place index which is a composite measure of various community factors census tracts that have low measures of that have 24% of the population but 61% of the cases. The maps below give us an indication of how little data or how much data is actually missing so this is the United States on the left shows the infectious disparities throughout the states and the map on the right shows the disparities in death rates and so you'll see that for example Texas lights up is very light and showing sort of very few disparities some states are in gray indicating that we don't have really any data and so one of the messages for today is that we don't fully have our hands wrapped around the COVID pandemic within this country partially because we're not doing the kind of testing that other countries are so we don't have our hands wrapped around the pandemic in general but also because we don't have good data about race and ethnicity so we're not able to pinpoint and track fully the scope of the disparities that we have and be able to target interventions appropriately resources and interventions within cities and across regions so that that's an issue I didn't mean to have this slide in there so for the rest of the talk I'm going to talk about COVID disparities why they exist but also what we can do so a lot of COVID disparities are driven by structural racism and so we know that structural racism can cause biological changes meaning changes in the pituitary axis changes in autonomic dysregulation changes in inflammatory markers that cause an increased risk for chronic diseases such as diabetes, cardiovascular disease chronic lung disease we know increased people's risk for susceptibility to COVID infection and worse morbidity and mortality from the disease itself we also know or are coming to know that structural racism also specifically affects the acute inflammatory response for example impacts antiviral responses and there's been data that has recently shown that 50% of the black-white difference in some of the social genetic immune response has been attributed to racial discrimination so not the inherent genes but we're talking about epigenetics and changes to our genes that have responded to environmental circumstances so these are just examples of the kinds of data that's been out there so this is a study that talks about accelerated telomere shortening in response to life stress so an epigenetic change the telomeres are little caps at the end of our chromosomes that are protective against diseases and they shorten in response to life stress this study shows chronic exposure to everyday discrimination is associated with coronary artery calcification for African-American women this study looks at self-reported experiences of everyday discrimination and how they're associated with elevated C-reactive protein in older African-American adults epigenetic signals and how social disadvantage gets under the skin and how that's a challenge for the public health community and this is one of the papers that was describing this it's called a fire this time, the stress of racism inflammation in COVID-19 and it really does to sort of a deeper dive into some of the inflammatory pathways at the cellular level and how they are specifically related to some of the changes and cytokine storms that we're seeing that are specifically relevant to COVID-19 and how they may play out with some of the racial differences that we're seeing one of the things that we understand or one of the things that we've been experiencing I'll say as a country or as a globe is the the combined sense of stress and uncertainty a feeling of lack of safety in what's going to happen next those kinds of experiences that we as a community have been feeling those are the kinds of feelings that people of color and marginalized communities feel on a regular basis, on a daily basis so if you can imagine how you've been feeling for 2020 that's how black people feel every day and it's those kinds of chronic stresses that lead to pathophysiological changes within the body and that chronic stress model is what has led to an increase in chronic diseases as well as acute changes our ability to respond acutely to diseases when they manifest so they're so close structural racism has put us at risk for physiological diseases but when we think about structural racism we're more typically thinking about limitations and individual opportunities limitations in income in education, in housing more likely to be arrested and have interactions with the police more likely to be incarcerated, things like that that have impacts on people's life opportunities and more likely to be subject to racialized residential segregation and within those communities have fewer resources let's see next slide oh this is not working okay so this is just a map of the city of Chicago showing how we are extremely racially segregated city so the green shows areas that are greater than 95% African American the yellow areas are greater than 95% Latinx and the purple areas are greater than 95% white so the southern and western parts of the city are primarily either black or Latinx communities and although we've made significant progress in reducing some of the racial disparities in our city by COVID you still see that there are hotspots in our area in our city for COVID mortality that are in the southern and western communities in our city so all of the different things that I was talking about for structural racism and how they can manifest in biological differences individual risk can be sort of lumped together into what we would consider place based risk based on racialized residential segregation that results in crowded housing poor ventilation fewer community resources so when people have to think about what they need to safely shelter in place where can I get Lysol wipes and hand sanitizer do I have to travel and use public transportation in order to meet those needs so place based risk that puts people at risk for infection and I'm being able to safely shelter in place as well as individual risk so I have an increased co-morbidity burden has my limitations in life opportunity mean that I'm more likely to be an essential worker am I more likely to be arrested and put in jail or in prison where I am more likely to be in a crowded situation I do have access to health care all of these things increase risk for exposure to COVID and so the what I'm going to talk about for the next period of time is just recommendations that are the result of a paper that is currently in Pat Press is coming out next month electronically and in print in January and two of the co-authors David Ansel and Selen Rogers are the co-leaders for the racial equity response team that is part of the city's efforts from Mayor Lightfoot to try and address the COVID disparities here in our city so the first recommendation is to require the collection of race ethnicity data within COVID reporting and I made mention to that earlier on how significant of a problem that is so 50% of patients have missing race ethnicity data among the states in the union and so doing so would allow disease tracking across areas like regions of the country as well as within areas such as counties we absolutely need that the second recommendation is to use risk and or individual risk and place based strategies to decrease COVID exposure so that means reciprocity for essential workers for at the very least PPE partnering with community based organizations within communities for dissemination of resources such as education hand sanitizer PPE particularly within communities that have high risk high rates of test positivity thinking about congregate living facilities within this city has been a place where we've seen a lot of the disparities driving the numbers where a lot of our seniors are living our policing practices are decreasing the cycling within jails and for a lot of cities we have been releasing and advocating and actively releasing the low risk nonviolent offenders from prison populations because of the sort of tender box that is happening within prisons and the inability to protect those prisoners and at the very least they should have PPE and masks this is a paper that was specifically coming out of the Cook County Jail and showed how just the process of arresting people taking them through the jail system and re-releasing them back into the community is a significant contributor for COVID infections within the city of Chicago and the greater Chicago area our third recommendation is to utilize individual risk and place-based strategies to increase COVID testing so we know that about 24% of community health centers do not have drive-through or walk-up testing when we look at New York City we find that the census tracts that have higher testing rates are ones that have higher percentages of whites and higher family income although those are the very census tracts that have lower test positivity rates within Chicago that are available in areas that were predominantly white and northern before other areas in the city and so this is a map of distance to the first testing site and the second testing site by census tract and we see that those in the white neighborhoods had lower rates as of April 1 by May 15 those distances had rapidly closed but it took at least six weeks for us to sort of close that gap within the city of Chicago so that means that we're going to have an investment of testing resources and infrastructure into areas that have high case rates and test positivity and of sharing of resources between health care centers and I know that the University of Chicago has done significant investment of resources within our surrounding community-based clinics and community-based hospitals to be able to provide testing within the south south side of Chicago fourth is to repurpose ambulatory infrastructure for COVID testing prevention, I'm sorry for COVID prevention support and mobilization and so we have as an example Oak Street Health that is based here in Chicago and has spread throughout the region but what we can do during times where we have decreased outpatient volume is use it as an opportunity to repurpose some of our staff and to do enhanced telehealth for our high-risk populations and to do screening for social and medical needs such as do they need food have they run out of their medication do they need extra supplies to monitor their blood pressure diabetes at home to measure and keep an eye on their temperature and oxygen what are their behavioral health needs and to utilize existing staff for those purposes next is to safely isolate and support COVID-19 patients from high-risk living conditions and so we have a lot of populations that we're thinking about the isolation of people who have mild disease but are not hospitalized people who've been hospitalized like the president but have been released home while they possibly are still infectious and then people who have possibly been exposed and may be positive but we don't know yet all those people really need to be either quarantine or isolated in a place where they can have their own room and their own bathroom and the inability to do so means that they are then at increased risk of community transmission if they're living in a high-risk community in a high-risk living condition we in the city of Chicago have increased housing support for unsheltered or homeless person but what we need to be thinking about is expanding those kinds of services for people who are sheltered but still considered high-risk sixth is to implement city and statewide protocols to share resources and patients many of you may have heard the WBE story that broke this summer about how the pandemic revealed a gaps in care there's significant hospital variation in risk-adjusted mortality from 6% to 81% and the odds ratio for death is upwards of 3% for hospitals who have less than 50 ICU beds versus those who have greater than 100 and so what we need to have in place are protocols like we do for trauma and for strokes within this pandemic to make sure that we can quickly efficiently and safely care for people who are sick with COVID and need to have an organized system of care we currently don't have that and we have proven that as a city this country has not been able to come together and develop those kinds of protocols that we need to do and that was just a data from JAMA showing that last we need to be able to allocate scarce resources in a way that can reduce disparities and that is a whole our lecture in and of itself I'll say is that some of our algorithms have shown that they have the ability to exacerbate disparities and undermine trust in providers and I'll just say that with the current focus on vaccinations there has been an increased effort to try and think about how to do that fairly and to specifically think about how we can prioritize the disadvantage and focus on structural racism and how that has specifically affected minority populations and doing so in a way that we can mitigate health disparities and so when with NAMM coming out with their report what they have done is think about equity as a cross-cutting measure so that we can use a social vulnerability index in each of the phases and prioritize specifically vulnerable groups for the rollout of the vaccine so with that I will end and turn it back over to Marshall Thanks very much Monica and so if you can start putting your questions in the Q&A portion of the screen and at that point we'll be able to start sort of collating the different questions for the discussion period as well as there's a voting section where you can sort of thumbs up a given question and so the quite will have a sense then of which questions the audience most wants to have covered during our discussion session so our next speaker is Jason Carlawish who is also a colleague and a friend Jason is a geriatrician and a professor of medicine at the University of Pennsylvania and he heads University of Pennsylvania's memory center he's one of the international leaders in aging bioethics and a true renaissance man in terms of his skills and accomplishments and contributions to the field so in many of you trained well many of you have trained at this conference at the University of Chicago you know it's an intellectual place a life in the mind place but even at the University of Chicago I think that Jason stood out as being a particular intellectual and I don't think I've shared the story with you Jason but like Jason used to ride his bike back and forth between the University and where he lived and I can just sort of see when he was riding his bike he can just tell he was in deep thoughts so I thought he was like the highest risk person for basically like basically riding a stop sign so his bike and getting the slides wiped but you know fortunately for us and fortunately for the world he survived a hide park and is biking here and has truly become an international leader he does great academic work communicates with the lay public through venues like the New York Times and Washington Post he's written a novel about physicians and the search for fame and he has like both of them coming out in 2021 which I think will be partly what his talk will be based upon about Alzheimer's disease how it's become such an important issue and possibly related to that and so Jason looking forward to your talk well thank you Marshal it's a pleasure to be here greetings from Philadelphia I'm Jason Carlawish at the University of Pennsylvania and I let my slides come up here please brilliant so I'm a co-director of the Penn Memory Center and what I'm going to talk to you today is the story of how Alzheimer's disease went from being a rare disease to being a common disease to all of a sudden became a crisis, why? and in that story maybe what can we learn I think that many of you will see parallels to what we've been coping with in the last 10 months in 1976 Robert Katzman a neurologist wrote this editorial called the prevalence and malignancy of Alzheimer's disease a major killer it's a 1200 word essay put together a variety of different streams of research as well as a bit of epidemiology and demography to make the argument that the thing we call senile dementia isn't in fact caused by aging but actually is caused by the accumulation of amyloid plaques and said that that rare disease called Alzheimer's disease in fact is the same thing as this very common disease called senility and it's senility is not caused by aging but by the disease Alzheimer's disease and with that in 1976 the modern Alzheimer's movement got going NIA made a focus of research and the Alzheimer's Association was founded and 30 years later the nation took stock of its progress the Alzheimer's study group was a bipartisan was formed by a bipartisan request by congress modeled after the Iraq study group to examine the problem of Alzheimer's in America and to put it simply and bluntly over the course of this report the word crisis appears some 29 times I won't read in direct paraphrase from this intro of the report but you can see the opening line is the Alzheimer's crisis so that's 2009 Katzman wrote in 1976 so what happened over that 30 years of time whether perhaps what did we fail to do that transformed a common disease a major killer into a crisis and let's go back to the beginning a bit because I think there's some the story begins back in the early 20th century when this physician this woman who had dementia and the common story of course is that she was in her 50s and what he concluded was well she had this thing this disease that he wasn't quite sure because but all those folks with senility they have aging and they're separate and that's the sort of learned story that was inherited for the rest of the 20th century in fact the story is a little more complicated than that namely by a few years after he diagnosed treated care for an autopsy at his patient he would diagnose and treat other patients who had similar kinds of presentations as hers and would begin to conclude that maybe this thing we call senility and this thing we call Alzheimer's are actually perhaps the same that is to say this distinction between senile dementia as sort of the end product of extreme aging doesn't really hold up and the argument that he offered was based on the work of Oscar Fisher namely that these Fisher plaques as the amyloid plaques at the time were called describe Oscar Fisher were present in the senile as well as in the cases of Alzheimer's and so here we are in 1911 sounding extraordinarily modern and in fact when I read the subsequent case reports of the Lois Alzheimer's I sort of put them down and said my gosh this guy was sounding alarmingly modern and yet the story I was always told when I was a fellow was this distinction between Alzheimer's disease as the sort of pre-senile early onset rare disease and senile is this very common problem caused by aging and other sorts of collection of things was what the norm was well what happened why did the work of Fisher and Alzheimer's get forgotten well this is Wilford Owen poet dressed as a soldier because he was a soldier he fought in World War II and one of his poems called mental cases these are men whose minds the dead have ravished memory fingers in their hair of murders multitudinous murders they once witnessed Owen witnessed the spectacular breathtaking carnage of World War I first hand and he himself would actually be wounded in an explosion and suffer one of the common casualties or injuries that many of the otherwise healthy young men like him suffered namely what we would now call post-traumatic stress disorder and so I'm going to make the argument here that that war and that experience of post-traumatic stress disorder are at the heart of why things fall apart so just one more bit to weave here this is Aloys Alzheimer's champion Anil Kreplin on the top of the gentleman with the large mustaches and I won't read in great detail as quote but Kreplin was a foundational leader in psychiatry and a champion of Alzheimer's work and in his day his textbook of psychiatry was the dominant textbook Kreplin was the psychiatry as both there was to medicine for example after World War I Kreplin would like many Germans become poisoned by sentiments of anti-Semitism which is what this quote reads about how he blames Germany's collapse after the first World War to anti-Semitism so let me tie some threads together World 1 happens and World 1 devastates Germany's economy it essentially shuts down research the work of people like Aloys Alzheimer's etc. Oscar Fischer Jewish would ultimately be imprisoned and taken out of his job because he was a Jew and later imprisoned by the Nazis Kreplin would endorse anti-Semitism his reputation would be shattered the point being is that the progress that was occurring in this German science would abruptly end because of the First World War our story takes us across the seas to America where Dr. Will would champion not biological psychiatry but Freudian psychiatry back to Wilfred Owen with his PTSD it transformed Freudian theories of disease from sort of a fringe aspect of psychiatry Freud even worried that World War 1 would essentially end the psychoanalytic school but World 1 would make psychoanalytic approaches to illness imminent because how else can we explain these otherwise healthy young men who have devastating neurologic and psychiatric symptoms and in America this theory of illness would dominate psychiatry Will manager here would be one of those champions of the psychoanalytic school so my point is that Alzheimer's disease didn't become a prevalent disease simply because there are lots of old people and because science advanced Alzheimer's disease became was forgotten because of World War 1 the economic crises that have happened in Germany and the rise of Freudism for those reasons Alzheimer's disease was separated from senility and sort of forgotten until finally Caspen wrote his paper which takes us back to Caspen's paper so what happened in the years to follow he calls and raises awareness and yet something doesn't quite happen because as I showed you 30 years later the Alzheimer's study group would say this is a crisis well what happened well it's a tangled set of events since 76 first the National Advocacy Group the Alzheimer's Association would pretty rapidly stumble over the question of what's our focus is our focus the self-help group to help people with Alzheimer's disease and that particular cause of dementia or is our focus a self-help group to help people with dementia whatever the cause may be and the Association would struggle over that focus and indeed its earliest name was the ADRD the Alzheimer's Disease and Related Disorders Association a cumbersome clunky name that tried to reflect an effort to encompass all the many causes of dementia the Association would later drop that name and call itself the Alzheimer's Association to try and focus on that disease but in focus on that disease and the desire to pursue research the Association would stumble over a frustrating interpretation of congressional approaches to funding namely that Congress doesn't do disease of the month funding what Congress does is give NIH a big pile of cash and then NIH decides how to spend the money Congress doesn't tell an age give this much money to Alzheimer's that much to cancer etc well that is correct but not correct it does actually allow NIH to ask for and get just how much money it needs for cancer and AIDS but all the rest of the diseases Congress had no control over telling an age how to spend the money well what NIH and so for about 30 years the monies that would go for research funding for Alzheimer's disease were part of the general appropriations to NIH not specific as is the case with cancer and AIDS and so research funding would always lag and finally there would be an enormous debate that would begin soon into the organization of the Alzheimer's Association in the NIA over just how many people have this disease the debate over prevalence and this inability to arrive at one number of people agreed on would frustrate efforts to organize Congress around what's the problem and what we need to do about it but there's one more tangled root in the crisis and it's this man Ronald Reagan Reagan would come into office at the same time that Alzheimer's would be recognized as not a rare disease but a prevalent disease and Reagan well no any none of his speeches or press conferences in any way explicitly said things like we shouldn't be caring for persons with Alzheimer's etc he would pursue a series of policies that would do just that it would hinder the ability to advance care for persons with Alzheimer's disease. Reagan's look back on the years prior to his election summed up in the State of the Union address remark years of rising problems and falling confidence marked his in the 70s there was a feeling government had grown beyond the consent to the government families felt helpless in the face of mounting inflation the indignity of taxes that reduced war for hard work, thrift, and risk taking all this was overlaid by a growing web of rules and regulations and he would strive through his presidency not to expand coverage of Medicare to help take care of matters like long-term care services and supports but rather to try and shrink the size of Medicare and Medicaid arguing that it was rife with waste if ever there's this quote from him that I think captured the sentiments of his approach to governing and also in these current times even more chilling is this quote from a press conference the nine most frightening words in the English language were I'm from the government and I'm here to help another trend that would have caused Alzheimer's to become a crisis was what I call a crisis in the family namely sharp disagreements over the role of women are women by nature being women and housewives simply the natural caregivers who won't even acknowledge as caregivers or is the role of woman like the role of man to pursue your life as you choose to pursue it and the desire to take care of someone who has Alzheimer's disease should be recognized as distinct role the role of a caregiver this photo juxtaposes a empowered woman of who has Alzheimer's in an Alzheimer's association public service announcement who's invoking ideas of autonomy independence I choose my life the way I want to versus fellow Schlafly depicted there will pose the Equal Rights Amendment and advance the cause for family values that cause for family values would argue that things like welfare expansion of Medicare to include long-term care services and supports will all part of the socialist takeover and so Alzheimer's disease in summary got caught up if you will as sort of a collateral damage in the culture wars that would haunt America and even to today around what is the role of women in America and the role of government to support caregivers and acknowledge them as legitimate people doing work so as Marshall mentioned I have a book coming out and what I've given you is a very rapid overview of one of the key themes of the book which is how Alzheimer's disease became a crisis here's the cover of the book the problem of Alzheimer's in the subtitle how science culture and politics turned a rare disease into a crisis and what we can do about it it's out this February from McMillan St. Martin's press I guess my summary take on point to you is I was taught and many of us were taught that the reason why Alzheimer's became a crisis is because there's lots of old people and aging is a chief risk factor to develop Alzheimer's that's absolutely true but if there's a take home message from my remarks is a tangled web of events culture and politics also contributed to why this disease became a crisis I've over viewed them from the beginning of the 20th century to now and they involve as I say world wars, dark nationalism anti-Semitism, the politics of welfare and debates about the role of women in the family and the degree to which America should acknowledge caregiving as much an essential part of the healthcare workforce as we do physicians nurses and others I really value the opportunity to have spoken to you today Mark it was great to see you coming from your arched hallway there and Hyde Park and I look forward to the panel later on thank you so much Thanks very much for great talk Jason and a reminder for people to keep on putting those questions into the Q&A section and to up vote questions that you are particularly interested in we'll have a great discussion after the last speaker who is Stacey Lindow who is another colleague and friend who is a professor of obstetrics and gynecology and medicine in geriatrics and one of the rare people who is an international expert in two different areas one is woman of sexuality particularly sexuality of older women as well as women who have oncologic cancer conditions as well as one of the international leaders on social determinants of health in particular developing systems to screen patients for social determinants and link them to community resources that can address social determinants and creating that free flow of information back and forth between the healthcare system and these community sectors Stacey also is a tremendously dedicated social justice advocate someone who cares deeply about the community does wonderful things in terms of with her research and with her various organizations hiring many community members and truly making a difference what's the highest praise I can get for Stacey and so our panel while we're waiting we're in a so-called green room we're in the same virtual space waiting to speak and there's a wonderful producer Eric to shout out to Eric who has been wonderful with the tech a very calming presence and Eric bears a similar resemblance to the general manager of the Cubs Theo Epstein so I said you have a little bit of a Theo Epstein vibe to you and instead of punching me Eric kindly said well thank you so Stacey then asked well which visually baseball player do I remind you of so I thought about it for about a minute is a brew who as you read the paper today is the White Sox first base slugger who just won the AL MVP award and interestingly Stacey's response was hmm does he play left field because left field is my position so Stacey knows a lot about a lot so Stacey Linda thank you Marshall I'm glad that's the comment that you shared and not one of the others I made in the room it's a pleasure to be with all of you I so wish we were in person I love being at that podium at the annual conference and looking out and seeing so many friends in person Mark congratulations thank you for bringing us all together again and congratulations on your on your honor and I echo what Monica said to be among friends kicking off this workshop this conference this year is a huge it's a boost to the mood let's just say that so I'm going to speak about inequidemics and focus on women and COVID-19 get my finger on the pulse of my slide button here you've had a chance to see my funding and disclosures I have no relevant conflicts of interest so what is an inequidemic while I googled it on November 3rd while trying to distract myself from the election and Google asked me did I mean epidemic and obviously no I didn't mean that I if I I know what an epidemic is but I was excited to see that this is a new word and forever the conference on clinical medical ethics will be credited for introducing this word to the world via Google I don't know Dr. Dara Brennan but she's a Chicagoan an infectious disease expert who almost a year to the date of the declaration of the pandemic published this patient page in JAMA explaining to the world what is a pandemic so a pandemic is a health condition that has spread globally we all know of course an epidemic is a smaller outbreak that's spread to a large geographic area these words may not have been in our daily vocabulary until several months ago but they are now and probably for the rest of our lives there's another term that I find intriguing introduced by professor Meryl Singer an anthropologist at University of Connecticut who studied HIV and other infectious diseases and this is the term syndemic syndemic is a synergy of epidemics or endemics or pandemics are all of all the above working together to determine outcomes and here he was studying HIV AIDS in the Puerto Rican population in Hartford, Connecticut he identifies substance abuse violence and AIDS as a syndemic of conditions that takes a devastating toll on the lives of the urban poor and this acronym SAVA becomes recognized as one of the sort of a classic example of what is a syndemic the Lancet has recently written a whole issue on syndemics 2017 so if you're interested in this topic I refer you there even the concept of syndemic wasn't quite working for me on the day when Mark sent the invitation about the McLean Center conference this year and that was a day when I was thinking with my team about what we were going to do to understand the status and health of women in the early phase of the pandemic the pandemic is changing so rapidly and we would have hoped that things had leveled out by now which they haven't and so when Mark said would you speak and by the way what's your title we all have this challenge don't we when Mark calls six or seven months in advance the term inequedemic came to mind for me so the concept of inequity being forward in the concept of this pandemic this beautiful asymmetrical nebula 7000 light years away in our own Milky Way is provided by the Hubble telescope and they call it an example of beautiful asymmetry certainly in inequedemic doesn't feel beautiful for the people who are on the wrong side of justice but what the image illustrates to me impressionistically is the dynamic nature the ethereal nature of some of the combined factors that are determining our health and our resilience real time in the context of this pandemic so for today women are at the center or at least for this 15 minutes women are at the center of the conversation about this pandemic University College of London has a Center for Gender and Global Health which has its mission to ensure gender disaggregation in the science that emerges about the pandemic and other conditions so much so many of the reports including from the CDC gave us aggregate data Dr. Peek showed us aggregate data by race and ethnicity it's very hard to find gender disaggregated data even though there are reports in the news media about differential impact on women so here we see that men and women worldwide are about as likely as each other to have a confirmed case maybe a little bit more for women because we're more likely to use healthcare perhaps more likely to be tested and we are more likely to be working with other people to see if the disease is available equally likely to be hospitalized men more likely to have serious morbidity and to die from this disease those would be considered the primary effects of this disease women are more susceptible to the secondary health effects so the consequences of being exposed to or being in the environment with or even having the infection and the lay media tells us women are more prone to domestic abuse worldwide the child care crisis will set women back a decade or a generation and the pandemic has an outsized effect on women's mental health there have been some commentaries in the important literature about anticipating sex and gender disparities in the COVID-19 pandemic and lamenting the lack of gender disaggregated data nature in July tells us women are more affected than men by the social and economic effects of infectious disease outbreaks and that's not just this pandemic that's true when you look at virtually every major infectious disease outbreak over history why? Well, we're more likely to be the frontline healthcare workers we bear the brunt of responsibilities as our schools close and family members fall ill we're at greater risk for violence we're disproportionately disadvantaged by reduced access to sexual and reproductive healthcare the main thing that differentiates women from men the gender distinction is women's diminished agency over our bodies whether it's in the workplace whether it's in the healthcare encounter it's everywhere we go and so if there's an answer to the gender disparities it's to ensure that all women have agency over our bodies at least equal to men so there is a general hypothesis that socioeconomic disparities for women are the drivers of the secondary health effects and so if we can intervene on these factors we may be able to mitigate the impact on secondary health effects my lab has been studying health related social risk factors this is a subset of social risk factors thought to be highly mutable like food housing transportation utilities that are associated with an elevated risk of illness health care cost and utilization so we hypothesize that changes in these risk factors in the early pandemic phase are both policy relevant therefore potentially intervenable and modifiable drivers of secondary health effects so I mentioned we were working on a national women's health survey when Mark called and I'm going to share some of those data with you let me first acknowledge collaborators across the OBGYN psychiatry and biostatistics department at the University of Chicago the survey was fielded quickly we had already been working with an internet based survey firm which has a sample a prospective panel of the US population we were able to quickly survey 3200 women ages 18 to 90 with a high participation rate we assessed health related social risks pre and early pandemic mental health outcomes we also assessed sexual activity and pregnancy intention so by the way this paper is in review so these data have not yet been subject to peer review but I'm excited to share them with you today here you see our sample the weighted sample weighting is used to approximate the US population compared to the best available pre-pandemic population estimates and as you would expect if the weighting worked okay our sample would reflect the socio demographic and characteristics of the US population one difference that's notable is the proportion of people living alone in our sample it was about half of pre-pandemic population estimates which may indicate or reflect that people already started moving home at this point when we surveyed them and you see that again here when we look at the pre-pandemic health related social risks a 10% prevalence for housing instability versus 17% in a 10 site study clinical population which was the best available population estimate compared to women with no health related social risks pre-pandemic women with one or more of these risks were younger they were black brown or Hispanic they were more likely to be less educated they had more people in their household they indicated that their health was poorer and more than half had one or more comorbidities versus fewer than half of women with no baseline health related social risks and here we say the early pandemic change in health related social risks so we asked women about food insecurity, housing instability, interpersonal violence in the period before the pandemic so they had to recall those things and then we asked them about what about this period the first month since the pandemic was declared so on the left we see women who had no health related social risks before the pandemic and that light gray indicates that most of them still had none early pandemic nonetheless more than 25% developed an incident risk factor food insecurity being the most common incident risk factor and about 9% had new interpersonal violence which could include intimate partner violence. The patterns look very different for women who had one or more health related social risk pre-pandemic the black bars show you the exacerbation or worsening of conditions among these women the medium gray bar shows you newer incident health related social risks so for example we see about 20% of women with intimate interpersonal violence in the early pandemic phase develop this as a new risk here now we look at the relationship between these health related social risks and the secondary health outcomes anxiety, depression, traumatic stress the red crosses show you the pre-pandemic population estimates which for anxiety and depression are about 15% to 18% of the population too high to begin with but when we look at what happens in the first month of the pandemic we see almost a doubling the blue crosses overall of the rates of clinical anxiety and depression in the US women population and then you see the circle triangle square stratification circles are people who had no health related social risk pre-pandemic triangles are people who had one and squares are people who had two or more so having two or more health related social risk pre-pandemic is a significant higher rate of anxiety and depression upwards of 50% and more than one in five women early pandemic screen positive for both clinical anxiety and depression traumatic stress levels were on a par with what's been was seen in studies that looked at traumatic stress after Ebola or in the context of Ebola and SARS viruses those are the crosses in the middle and lower as we would expect but not too much lower than what was seen in the population after the 9-11 attacks. Sexual activity as Marshall mentioned is another area of my interest and it's an area that helps us get a sense of women's domain over their bodies in the context of this pandemic. So here using a Sankey Diagram we see the proportion of women who were sexually active pre-pandemic who in the first month now say that they're sexually inactive and we see only a few women who were in active pre-pandemic becoming newly active and how about pregnancy intention this is important because it tells us about future birth rates we see that 38% of women were actively avoiding pregnancy pre-pandemic 44% by April four to six weeks later actively avoiding pregnancy we also see a reduction as expected in the percentage of women who say they're actively trying to get pregnant important for planning in obstetrics we asked women about having sex are you having as much sex as you would like are you having more sex than you would like or less sex than you would like and the having more sex than one would like is an indicator of women's somebody's calling me of women again their agency over their body or potentially how they might be using sex actionally to maintain their basic needs so pre-pandemic there weren't a whole lot of women who said they were having more sex than they would like but the rates are far higher in the women with one or more pre-pandemic health related social risk so having a 20 fold higher rate of having much more sex than one would like for women who have one or more of these problems and more than double that for women who say they're having somewhat more sex and on the right side and we are doing a more sophisticated adjusted analyses but they're too preliminary to share with you I will say that all of these odds ratios are significant even when we adjust for every possible factor that could confound the relationship between health related social risks and having more sex than one would like but in the unadjusted analysis you see the hypothesis that women who are more vulnerable are more likely to be having potentially transactional sex bearing out and the highest odds would be among women who report that they are victims of physical violence so in conclusion we find not surprisingly but very significant high rates of health related economic vulnerability pre-pandemic among women and exacerbation of these pandemic you might not have noticed this because I went quickly but 16% of women who indicated a health related socioeconomic risk pre-pandemic also reported an income a household income of $100,000 or more vulnerability is associated with alarmingly high rates of mental health problems vulnerable women are much more likely to have more sex than they would like pandemic related mental health needs are likely much greater than available resources especially for vulnerable women U.S. birth rates are likely to be the lowest ever recorded in 2021 because we are already there in 2020 but women with more risks are more likely to be giving birth in 2021 than women without because of their sexual activity and all of this needs to be considered in light of the fact that women comprise the largest portion of the essential workforce the caregiving workforce and if we would call it that the essential workforce and so with this I come to a sharper definition of what I might mean by inequity the inequitable distribution of conditions across a population that enables spread of primary disease and its secondary effects and hinders response and recovery to the detriment of a whole population. Thank you. Thanks very much Stacy for a terrific talk. So we are now entering the discussion part of the panel and so it's a reminder to use the question and answer area of your screen to input questions as well as to upvote those questions that you have a particular interest in and so Eric can we bring the panel onto the screen and as people are coming on I'll just ask a first general question of 2021 new era new administration coming in what would be your number one priority ask at the federal government level for the new administration to be able to help your populations of interest? Sure I'll start. I would ask that the states take an active role in equity so California has already stepped forward and in October introduced and helped equity measurements as part of their rollout for reopening and so that in order for various communities to be able to reopen their communities that are most disadvantaged have to be within a certain percentage range as far as case rates and test sensitivity rates as the most advantage census tracts there has to be some sort of parity in order for that entire community to reopen because if we have essential workers from a low income community serving the businesses of a high income community that's just exacerbating disparities within that low income community so we have to think about the risks overall and share those burdens and so states are the ones who do a lot of the innovation and so asking states to explicitly think about equity in COVID implementation and reopening I think the I'm cautiously optimistic that this elections outcome at the national level could transform and finally address some 30 40 years of neglect that I narrated at my talk in particular I put a piece out just before the election and the hill pandemic election should move America to finally address its caregiver I was impressed in comparing the platforms of the two candidates whereas the President Trump's platform really did not at all discuss caregiving now President-elect Biden's platform has several concrete proposals to address the needs of American caregivers including the increase in the wage of what we call formal caregivers to do it and also to address America's informal caregivers namely spouses and children daughters-in-law $5,000 tax credit to make up lost wages that occur and I was most impressed at an effort to finally remove Medicaid support as a waitlist because it's still a demonstration project to make it simply part of the Medicaid entitlement so that people are no longer waiting to receive those long-term care services and supports those are incremental steps and I think you know in America right now maybe that's the best we can do but I'm cautiously optimistic that we might even be able to open up a conversation about long-term care social insurance on a national level the only country of the rich nations of the world Germany and etc to not have a system of long-term care services and support by a social insurance program it's rather shocking the last time we had consensus to try to achieve that it was 1988 but one and only one candidate didn't support it and a candidate that was Jordan and Barbara Bush so I'm cautiously optimistic that the Biden administration is working on care care beyond the deflected space of the last several decades both Monica and Jason's responses you know at the state and federal level makes sense to me women are not the only caregivers but two-thirds of caregivers for people with Alzheimer's and related dementias are women and the intersection of gender and race and ethnicity means that policies to mitigate racial and ethnic disparities will certainly elevate the situation for women you know if I had the opportunity to speak with President-elect Biden and Vice-President-elect Harris I would say what does the policy remedy to ensure that women have full agency over our bodies and this is not just a concept that relates to the issue of abortion although is where it gets talked about most often but women can't have full domain over our bodies if we're essential workers in an environment where we don't have personal protective equipment we can't have full domain over our bodies if we can't care for our own health when we're being expected to care for others who are dependent on us so I think I would take that principle to them and very happy to talk about policy remedies certainly pay not pay equality but pay equity compensation for the full scope of work women do to ensure the health of their families and the public more broadly would be high on the list as Jason suggested great thank you and so there are a number of questions about the presentations and access to the papers and all of the McLean center conference presentations will be on McLean center's YouTube channel so those will be uploaded shortly after the conference so people have access to those so there's a couple questions which are similar there's one from Laini Ross about vaccine prioritization how will we convince high risk groups to take the vaccine given the short time frame of safety data and then there's a question from Kelly Michelson of Monica will focusing vaccine distribution on marginalized groups create a backlash because vaccines have limited safety data so anyone on the panel open for discussion yeah I am I share the sentiments of the questioners around the concern about adequate uptake of vaccines you know the challenge with vaccines is just think about the influenza vaccine you know they're not 100% effective but they're effective enough to reduce the severity of illness certainly reduce the incidence but you know people still get influenza despite being vaccinated and in more sort of dare I'll say sane and rational times we could have a conversation about vaccines I'm that acknowledges those points I'm concerned that the events of the last several months in particular have so undermined the trust in the system that these expected shortcomings that we for the vaccine are going to be caused to undermine trust etc so what's the solution I mean the solution is it's about messaging it's about getting out coherent messages for people to set expectations appropriately around the vaccines and it's about targeting those messages to communities that are particularly vulnerable both to COVID as well as to potentially not taking up the vaccines in summary the story of vaccines in America is those in pediatrics and especially know is a fraught history in the last several decades especially of suspicion and doubting of their efficacy and even claims of that they're actually harmful I think we need to start thinking about how we're going to roll out a vaccine for COVID I totally agree and I think that we have to think about vaccinations from the healthcare industry and from public health as part of a larger system issue marginalized people are looking at the healthcare system as just one system in this country so this year when we see another system a police system a criminal justice system shooting black people on television wantonly every week and nothing happening that is telling an entire community of people that someone in this country does not care about the lives of black people and so then to at the federal and state level and so then to say we're here from the government and we're here to help we now have something good for you there are direct parallels and so we cannot expect for reasonable people to always partition out or compartmentalize different institutions of government and so I think that certainly turning this corner with a new administration does a lot of good in a lot of ways but we can't just do good messaging and have good messengers we have to also write historical wrongs and contemporary wrongs that we're continuing to enact among marginalized populations and say we're going to do things differently we have to address structural racism that is occurring on a daily basis before we can expect the people who are being affected by structural racism to open with welcome arms the things that are being given to them it's as simple as that so we move on to the next question and I'm going to ask Stacey you to take first crack at this one that's an interesting question from Kristi Kirschner oh I'm sorry to interrupt you I just yeah go ahead go ahead I know you want to speak on this important topic so I'm going to give you a chance for the next one which is them I think equally provoking question so Kristi Kirschner asks how can we just aggregate COVID health equity policies from charges of socialism well thanks Kristi first of all I'm sorry I'm having an audio visual issue so I didn't mean to speak over you on the last question I'm just going to add to the complexity that women especially reproductive age women pregnant women this vaccine we have to think about vaccine distribution in light of reproductive health and people's concerns about safety and so I just wanted to add that with respect to Kristi's question wow the word socialism has taken on a whole new meaning and it's one I'm sort of leaving out of my vocabulary for now although I remember as a kid hearing about socialized medicine and the risks of if we enabled health insurance or access to healthcare for everyone doctors would become government employees and medicine would be ruined so it's a long conversation it's not just today I think that the strategy echoing some of the ideas Monica just shared has to be ground up that when we think about gaining control of this pandemic including treatment and vaccination and planning for end of life we have to engage with people on the ground in the communities we aim to serve we have skills and expertise from science and medicine that can be informative to how communities are thinking about how they're going to manage with this illness but we should be there to support not to dictate having a highly effective vaccine is worthless if people don't trust it and won't use it and we've learned in many instances over and over and Monica's work we've learned from the example of this that unless we are deeply engaged with and trusted by the communities we aim to serve our service will be rendered highly ineffective so I'm going to build upon Stacey's comments that discussions about inequities or racism one of the challenges is that ultimately it's an issue of power so it's power over the framing of an issue so for example the idea that Joe Biden is a socialist is kind of ludifrous but smart politically to try to taint Joe Biden with a socialist label because in American culture socialism has a bad vibe among the population so something is a matter of messaging so for example when they message or they do the focus groups of the public how to communicate about disparities the word opportunity tends to pull well something framed as well policies that create opportunity for all opportunity for a healthy life opportunity for a chance for well-being those pull well so the same concrete policies framed in with different language can have very different levels of polling support among the public so again for example right now I have these horrors of like Weimar Republic Germany between the wars creation of a scapegoat blame for Germany's loss in World War I and the current attempts to claim that President Biden is stealing the election so it's a matter of messaging and pretty crass in terms of the political power play by some of the current national leaders yeah if you want to read what I was working on the book reading about events in Germany in the during and in the aftermath of World War I were very disturbing because you saw how culture and politics can destroy science and you know science is powerful just to use the word you're using Marshall that's actually very fragile I mean it really requires it's mysterious it's expensive it's elitist it has all the qualities that are seemingly anti-democratic it relies on resources that people sort of have to trust that it's going to work and so if you create an environment that doesn't provide adequate resources that undermines the trust in science science falls apart and the story of what happened in Germany with respect to neuroscience and psychiatry is a spectacular story of a country just ruining what was the only nation that was making substantial progress with respect to understanding the diseases of aging and the fact that Freudianism would supplant biological psychiatry and I'm not saying Freudianism is wrong or right but I'm saying it was disproportionately supplanted biological psychiatry and that it would occur in America it's hysterical and ironic because Freud hated America even to the American psychoanalysis but setting all those issues aside I found that the rhetoric of socialism that was used in this election was a replay of rhetoric that's been used since Operation Coffee Cup which was the AMA's organized effort to take down then early proposals for Medicare in the early 60s and the champion for Operation Coffee Cup was the then actor soon to become governor Ronald Reagan who spoke of Medicare as socialism this is a related question here I'm going to skip to by Adam Rich is the spread of misinformation on social media regarding COVID and its vaccines contributing to healthcare disparities if so how do we address it and I know that all three of you are active on social media and twitter so great question social media but it's largely an echo chamber few of us have audiences that span well beyond our own political spectrum and I do think there's good evidence that misinformation deliberately spread through social media is absolutely having an impact on divisions the creation of or perception of divisions in our society whether these channels perpetuate disparities or inequities in COVID outcome specifically or in health outcomes I think is an active area of research it seems very plausible to me and as much as I wish that the strong voices of equity and justice from physicians and ethicists on twitter and other social media channels could be a buffer against that I fear that largely we're speaking to ourselves it's good for a catharsis and sharing bird pictures but hard to see yet how it might mitigate against disparities one thinking like the COVID 19 seminar series it gets into issues of free speech lies, censorship public health tough issues so there's a question about the interest in equity can we be overdoing it in terms of over emphasizing racism and going too far can we be going too far can we be doing unintentional negative things by the highlighting of systemic racism and inequities well I suppose I'd want clarification on what the person means I think maybe what they're implying is that they're of backlash and with the pendulum swing too far and people become hostile to the idea like did we get Trump because we had Obama or perhaps they're asking are we overreaching and that somehow marginalized communities would be getting more than they deserve I'm not sure exactly what the question is but what I will say is that addressing disparities in the COVID epidemic is how we do public health and let me just say that again best practices for public health would eradicate COVID disparities because what they do is use data and evidence and epidemiological modeling to figure out regardless of race where the hotspots are where the high risk populations are and target those for additional resources that's how we eliminate Ebola, HIV, AIDS, that's how we go after any kind of disease it just so happens that the people who are disproportionately affected by this disease are low income persons and minorities and people who are suffering because of structural disadvantage if we took away the structural disadvantage they would be more likely to be equally spread that burden within the population but they're not because we cannot reckon with our historical and contemporary issues around racial injustice so they're disproportionately spread within the population but the underlying principle is that we've got to go where the money is that's why you rob a bank that's where the money is you treat who is suffering that's how you do epidemiologically based interventions and so you don't overdo it by treating you know people who are suffering in an epidemic it just so happens that those people are persons of color and so I think that gets to another issue that I saw pop up about how we address race and what we're really trying to do I would think that what a lot of people are arguing what we argued in the fair vaccine allocation was that we think about how racism race doesn't put you at an increased risk of disease racism does so we think about how racism has affected people and target those mechanisms is it that you're now an essential worker because your life opportunities have been limited is it that you now live in with poor ventilation is it that whatever how has structural disadvantage changed your life in a way that you are at increased risk for disease and target those populations because there are some black and brown people who haven't necessarily been as affected so we're not saying that everyone just because of melanin needs to be prioritized we're saying that the way this country has historically worked those people have been disproportionately not everybody to the same degree but disproportionately affected and we need to take those structural disadvantages into consideration so I'll add on to Monica's points that I think oftentimes when people talk about anti-racism efforts at least at an organizational level it often starts with the cultural humility courses of bias training which is important but in some ways like the even more insidious and powerful issue is that the way that the structures and policies and systems are set up that bias I mentioned I was writing editorial for quality and safety journal the paper I'm writing editorial basically found that like there's under detection of patient safety issues in voluntary reporting systems so the systems that lie upon the judgment of clinicians under report of safety problems compared to more objective systems and so for example if you have a whole safety system based then upon sort of a bias structure well you know you can have a systematic problem with inequities then and safety problems for minority populations so Monica says it's sort of where the prevalence is of people suffering from COVID then also again it's a systemically bias and racist structures that have been built in that unless they're addressed there's only so much progress that can be made so we have two minutes left and so I just would want to close by asking each of our three panelists to whatever you want to share in terms of closing comments why don't we start with you first Jason well first it's a pleasure to be here congratulations also to Dr. Siegler for his award well-deserved and marvelous you know I'm optimistic I think that personally I can say that at our memory center and several other memory centers where we were very proud about our outreach efforts to increase representation of persons of African-American identity and we would stop there and just count the numbers and say see we did it we just added in in the last several months now measures of social and economic disparity microaggression etc to go beyond just simply tabulating based on race and saying oh look at the differences wow and that's happening across a variety of memory centers it's a small example but I have hope I'll say that I too want to extend my congratulations to Mark for his decades of dedication to the McLean center all of his hard work on being the winner of the prize this year even though there's no money involved and to thank you for once again kicking off this year's conference with our health disparities panel and to say that I too despite my Debbie Downer comments have extreme hope for what we can do in the coming 6 to 12 months as far as turning the corner for COVID in general and particularly for COVID disparities I'll be very brief but to make a difference on issues of justice in health and health care needs to be in the workflow as Marshall pointed out with his talk Mark it does not escape us that you've made this topic a priority in many of the last of the last conferences and we have to keep working on it because clearly our work is not done so thank you and thank you to my colleagues Marshall for moderating and Jason and Monica Mark you're the man, we love you thanks to the panel for a wonderful discussion and take that walk around the museum of science industry come cherry blossom time and I think you'll feel some hope also thanks everyone