 Steve Whitman, who directs the Sinai Urban Health Institute, has been a consultant at Rush University Medical Center and has taught epidemiology at Northwestern University. He's done ongoing epidemiological research in Chicago for the last 25 or 30 years. He evaluates health interventions and many of the programs that he looks at focus on community-based epidemiology, especially relating to HIV counseling and testing, to pediatric asthma intervention, to quality improvement for mammography services, obesity prevention, and smoking cessation. While I'm on that, I should just say that in June of this year, the Sinai Urban Health Institute was awarded the Environmental Protection Agency's 2010 National Environmental Leadership Award for their work in asthma management. So asthma, as I say, has been one of the areas that Steve's group is focused on. Steve has served as a senior epidemiologist at the Center for Urban Health Affairs and Policy Research at Northwestern, has directed the program on epidemiology for the Chicago Department of Public Health, has managed the Vital Records Division of the Health Department, and has even served, you didn't tell me about this one, Steve, as Assistant Registrar for the City of Chicago. I didn't know we had an Assistant Registrar. Just about three days ago, maybe two weeks ago, a new book of Steve and his group, edited by Steve Amishah and Maureen Benjamins, was released by Oxford University Press. There are some of these brochures that I'll send around afterwards. It's called Urban Health, Combating Disparities with Local Data. And as I say, it was released just a week or two ago by Oxford. I chided Steve that he put the gloves on for his title today. I was hoping he'd come along and give us a no holds bar talk, but what he's gonna talk about is racial and ethnic health disparities in Chicago, a matter of life and death, and an indictment of our city. Please help me welcome Steve Whitman. I'd like to try. Can you all hear me okay without the mic? So it's an honor, truly, really an honor to be here. I know many of you, Dr. Miller, Dr. Peek, Dr. Massey, Dr. Whitaker and I have worked together a great deal and many of you, I won't call everybody's name, but really it's an honor to be here and I thank you all for coming. Let's see. Yes, I chose a nuanced title for my talk and I hope it'll be appropriate. I'll try, I won't nearly take the full, I guess this goes for an hour and a half, but I'll finish a lot earlier than that and I hope we can have a good, honest discussion and I welcome disagreement, so don't feel like you have to agree with everything I say. What I would like to do is start by showing you some of the data we've collected at the Sinai Urban Health Institute, two forms of that, both from Vital Statistics and from a big survey we conducted, and then talk about ways we can proceed in terms of making things better. And then I'll conclude at the end that my title is exactly right and we have to figure out a way to move ahead. So let me start with this overview. Are you familiar with the Healthy People Movement and the Healthy People and Goals? Many of you are shaking your head and the notion is every 10 years the United States sets goals that it will come back and see 10 years later have we accomplished them. So in 1980 we did for 1990, 1990 for 2000, 2000, 2010 and we're now setting goals for 2020. And their huge displays, for example, the Healthy People 2000 had 319 objectives, 2010 had 467 objectives, but it always starts with two or three overarching goals. And the overarching goals, there are three of them for 2000, number two was to reduce health disparities and for 2010 was to eliminate health disparities. So the government is concerned about this issue and talks a lot about it and in many grants to NIH and HRSA we have to state explicitly how the work we're proposing will try to reduce disparities and how it will contribute to that effort. So, but it's curious because there hasn't yet been established a paradigm or a structure for seeing how we're doing. I mean there's 367 objectives, so are we doing better or are we doing work? And surprisingly with all of this effort that's been expended, there's no clear cut paradigm for seeing in general, are we doing better or are we doing worse? So myself and a couple of my colleagues at the Urban Health Institute published this paper that appeared in Public Health Reports. I won't say too much about it but what we did was we took 20 or so measures and we compared them for black people and white people in Chicago and we wanted to see how things were going. We did some SES comparisons as well and that's just the front page of the article that was in Public Health Reports. Shortly after we published this, some people from the National Center for Health Statistics Ken Keppel and his colleagues published a paper bouncing off of ours a little bit but moving the field much ahead, examining what they called health status indicators saying indeed we needed a bunch of them and here's what we could do and Ken and his colleagues just wrote a lovely paper and then we replicated that paper for Chicago and so again we try to look at health status indicators, see how things were going and to replicate Ken's paper we compared disparities, black-white disparities between 1990 and 1998 which was the last year of data we had at that point. So that worked out pretty well and there was that paper and then just recently, several months ago we published a replication of that paper in American Journal of Public Health. Now, remember I said we had done 1980, 1990 through 1998, now we were able to update it through 2005. So we have 15 years of data and the structure is that we compared the disparities between the health of black people and white people in Chicago in 1990 and then in 2005 and the notion was are the disparities narrowing or widening that's what we were trying to understand and we did that both for Chicago and for the United States. So we have those sets of comparisons and we had 15 health status indicators and I'd like to spend just a little time showing you how we did that. There's the paper. What we did was remember I said we had 15 measures, health status indicators, HSI's and 10 of them were measures of mortality and they're generally the leading causes of death, I don't think anyone would agree with these. You could substitute one or two but generally they're the leading causes of death. So we had those 10 causes of death and then three measures of birth outcome, infant mortality, low birth weight, no prenatal care, the first trimester and two measures of communicable disease. So those were our 15 measures. There's some details about the analysis. We age adjusted everything and as I said we made comparisons between 1990 and 2005 and 15 year interval and our disparity measure, the outcome of concern here with the percent differences in the black-white rate again in 1990 and then in 2005 and then we compared them to see if things were getting better or worse. And what we found was that almost all of the health status indicators improved over that 15 year interval. So in general things were getting better, there were a few exceptions but almost all of them got better. Again, you could find the details in the paper. It's in the American Journal of Public Health, I think in February but also it's on our website at suishicago.org if you wanna look at that. Racial disparities improved slightly and by what I mean by that is they shrank a little bit, not very much but a little bit in the United States so that was of interest but alarmingly racial disparities grew a great deal that is worsened in Chicago. And let me show you how that worked. In summary remember there were 15 measures, in the United States the disparity increased which is bad for six of the 15 measures, it decreased which is good for eight of the measures and in one it stayed the same so those are the 15. In Chicago it increased which is bad for 11 of the 15 and improved for four of the 15. So a gloomy picture and let me show you how some of that worked. This is for example all-cause mortality at a total death rate and this is what the graph means and it's a little bit elusive because it looks like these lines are close together but that just has to do with the scale that we're using but this 36% means that in 1990 the black death rate was 36% higher than the white death rate. Now that's an awful lot. These people living in the same city, Chicago and black people had a death rate that was 36% higher. When we looked at that in 2005 the death rate had grown to be 42% higher. So that's a lot worse and this asterisk here and here means that the difference was statistically significant. So on arguably the most important measure that is the overall death rate the situation which was very bad to begin with in 1990 grew to be significantly worse in 2005. This is heart disease mortality. I just selected a few just to show you the shape of things and what you can see here is that it was 8% higher. The death rate from heart disease was 8% higher for black people in 1990 and by 2005 it was 24% higher against statistically significant and this is interesting because you can see both rates were improving but the white rate improved much faster and so the disparity actually grew and I'll talk about that as a concept later on. This is female breast cancer and what happened here this is quite remarkable is that in 1990 the death rate from breast cancer for black women in Chicago was 20% higher than for white women. Now that's pretty bad, we wouldn't want that but by 2005 it had grown by a factor of five so now it's 100% higher, essentially twice as high and I'll talk in some detail about that if we have time but so this is really awful. I don't know if any of you saw in all over the media last week but there were demonstrations and protests because the state is cutting back funding for mammography and we were protesting that. Anyway that was us, that was our posse and we had annually every year we have what we call a report back to the public and so we had that as a program we met in the loop, usually we meet at a community then you'll usually a church, this time we met in the loop at a church in the loop and then marched to the state of Illinois building and had a demonstration and about 500 people showed up, it was quite wonderful and you could probably find that online, it was in all the papers and television, radio and stuff like that but it was in protest of this, this is why we were there, this is what we were protesting and you can see what's happened here again is the black rate has stayed constant and that's quite remarkable when you think about it because that says in 15 years black women were not able to make or we were not able to make for black women, those of us who run the healthcare system, any progress whatsoever, none in 15 years, it's extraordinary, almost no other health measure is like that and yet we were able to deliver to white women enormous benefits from early detection and treatment and so their rate halved essentially and the black rate didn't change at all so that's another shape of disparities. Here's still another shape, this is diabetes mortality and as you can see between 1990 and 2005 both rates stayed sort of the same and the disparity decreased just a little bit but it was not statistically significant and this was a result of the rates staying the same over time, here's still another shape, this is the percent of low birth weight infants, very bad thing we don't want to happen and here you can see actually both rates increased. Now the disparity narrowed and significantly so right here from 141% to 105% because actually the white rate, the black rate got worse but the white rate got worse more than the black rate and so the disparity narrowed in that sense. So this brings us back again, I'm not gonna show you the US data although it's all in our paper and I haven't shown you lots of measures for Chicago but it brings us back to the summary and what we can see is according to this data and I do believe it's the most comprehensive data anyone's ever done in a city and certainly that anyone's ever done for the city of Chicago. Racial disparities, black, white disparities, there are many, many other kinds of disparities we could talk about but just racial disparities are getting much, much worse in Chicago they're improving just a little bit in the United States but I don't think anybody would be pleased with what's happening in the United States but at least marginally it's in the right direction and in here in Chicago it's dreadful. So another way we've looked at disparities so that was remember vital records data essentially and another way we've looked at disparities at the Sinai Urban Health Institute is with this community survey and what we did was we were funded by Robert Wood Johnson and we wound up conducting a very big household survey in fact I think it's the biggest health survey like this door-to-door ever conducted in Chicago. What we did was we selected random households in six different Chicago communities and I'll say a little bit about that in a little while. We asked a large number of questions, about 600 questions, data which took about an hour. People were very generous in sitting down with us and letting us in and the interviewers interestingly told us because we thought it would be really hard to get into the doors of people. One big advantage was we had a lot of community support so community-based organizations spoke up for us but I think the other thing that really was helpful is that the universe, it's Mount Sinai is essentially as poor as most of the residents so I think they didn't feel threatened or that we were gonna take advantage of them and they were willing to participate. And in the, so here are the six, what happened was we got this batch of money from Robert Wood Johnson. We knew we wanted to do about 300 interviews in a community to get some statistical stability and we knew what we'd take about an hour so when we then budgeted it, it turned out we could do six community areas and the six that we selected then are two right by Mount Sinai, North Laundale Community Year 29 which is all black, South Laundale which is all Mexican Mount Sinai since right on the corner of those two communities. We selected then Humboldt Park in Westtown. I've done a lot of work there. I live there and my colleagues work there and I thought they'd be interested in research findings. So we selected those two communities. We wanted a Southside community and we chose Roseland and then we thought we would have sort of a comparison community and all white community and so we chose Norwood Park out by the airport. And I'm gonna show you a few slides. One thing very interesting about all of this, I think, is that when we were selecting the all white community, I didn't want people to say, you know, well, Whitman, you've rigged the data. So what we did was we lined up the all white communities and there's roughly nine of them depending upon how you define that in Chicago. Oh, I should ask you that. Here's a test. How many community areas are there in Chicago? 77. Okay, 77. 77. I can see clearly they give them an A. So the 77 community areas in Chicago, nine of them are essentially all white and we chose the poorest. So these are the communities. Let's see, do that. I don't wanna go through this, you'll be pleased to know, but the end of the story is we were able to speak to 1953 households and virtually all of them, 87% of them, agreed then to sit down and talk to us. And of everybody who agreed, virtually everybody finished the survey. So it's a remarkable cooperation rate in a sense, 87%. And we were quite pleased with that result. So again, the data pretty good for the communities, but absolutely not representative for the city. So here's just some random findings, percent of adults who are current smokers, by the way, in almost all cases, we ask the questions exactly the same way that they're asked on national surveys, so we then could make comparisons. So for example, with respect to who's a current smoker, and believe it or not, that's a harder question to ask than you would think. Nationally and in Chicago, it was then about 20%, 21, 23%. But then look at these communities, 40% in North Laundale, my office is, Mount Sinai is, 39% when you put men and women together. So twice the national average, and another way of viewing this, this is quite interesting I think, is that the last time the United States as a whole smoked at 39% was in 1970. So saying this another way North Laundale is 35 years behind the smoking cessation curve of the United States. And several of the other communities are not that different. So smoking was clearly a problem. This is, yes. For your smoking question, is that, what do you put it down as if they say, oh, just occasionally one cigarette, is that smoking? Right, that's why I said it's a complicated question. Actually, it's a series of three questions. We could talk about it afterwards, but first you say, do you currently smoke, how many cigarettes a day and have you stopped? I mean, all of that goes into calling someone a current smoker. And again, as you can imagine, a huge literature about that, and we use the same definitions that all the major surveys use. We ask people whether they had ever been diagnosed as being depressed in the way it's asked on national survey. And then we also ask 10 questions drawn from the Center for Epidemiologic Studies, they have a depression screening tool. So we knew both who had been diagnosed with depression and also who screened positive for depression. And the numbers, it seems to me are quite extraordinary. What you have, you can see is something on the order of 30 or 40%, either with a diagnosis of depression or screening positive for depression and roughly equally divided. So again, for example, if you look in Humboldt Park, where it's exactly divided, 20% of these adults said that they had been diagnosed as being depressed and 20% more had not been diagnosed as being depressed but tested screen positive for it on the CESD index. So again, there's lots to make of that, but huge levels of depression. And I have other slides in which we've correlated that with income, with education and all the usual correlates prevail. This is the percent of children who are overweight or obese. And let me tell you just about the scientific way in which we did this. What we did was we knocked on the, what we sent out letters in advance, many of them didn't get through for any number of reasons, but then we knocked on the door and said, we're doing the survey, will you talk to us? And if they said yes, we then made a list of all the adults, people 18 and above who lived in the household and we selected one of them at random to interview because we didn't wanna just select the person who answered the door. Then we also made a list of all of the children in the household, selected one at random, and then interviewed the adult in the household who knew most about that child. So we could and often did wind up speaking to three people in the survey, the person who answered the door, the person who told us about his or her health and the person who told us about the health of the child. So this is with respect now to the percent of children who are overweight or obese. And these levels, I don't know if you're familiar with this data, of course, everybody knows this is an obesity problem, but say, look again, just North Laundale, which is not atypical, 15% of the children were overweight, 53% are obese, if you add that together, 68%, more than two out of every three children were either overweight or obese in North Laundale and similar to the rest of the communities but Norwood Park you see coming in right here at the national average. So that was a huge issue. I'll tell you, when we first got this data, I said to one of my colleagues, that's impossible, you must have made a programming mistake. So could you go back and check it? And she went back and she said, Whitman, I got it right, stop bothering me and we discuss this any number of times. And to be frank, I was embarrassed to go out and say this thinking no one will believe me. And so finally one of my colleagues said, listen, you really are driving us crazy, what will make you stop? And I said, well, if we could find a place where we could measure a bunch of kids, that would be great. And actually someone in our group knew the principle of a local school in North Laundale, all black. And we said, could we measure the children? And she said, no, but I would allow the school nurse to do it if she had time. And there was a lovely school nurse who measured 200 kids all across the age spectrum. And in fact, they were a little more obese than this. Just to set that 47% of obese children in perspective, here it is in Humboldt Park, just for example, here it is in the New York City public school system and here it is nationally, all for roughly 2000 data. So you could see that 47% is huge. And here's one that speaks to it. We asked the caretakers, not right when we asked you about the kids weight, but in another part of the survey, how do you perceive your child's weight? Do you think your child is underweight, about the right weight, slightly overweight or obese? And this graph is the percent of caretakers of children who are overweight or obese who thought their children were the right weight or underweight. And you can see it's virtually everyone. That's what the, like for example, just go to North Laundale, you got 86%. It means 86% of the primary caretaker of the overweight or obese child thought the child was either the right weight or underweight. And we broke it down in a number of ways and it still prevails. So there's a question of perception and any of us wanting to do something on this very important issue, as I think you were suggesting, need to take into account the perceptions of people because you know, if you ask people if you're trying to say do smoking cessation, at least people know if they smoke or not. I mean, they may not tell us the truth, but they know. But in this case, they might, you say, well, we have this obesity reduction program for children and they'll say, well, what's the problem? My child's not obese. So it really just means that a whole level of education is necessary and nothing could be more important than making it culturally relevant to what's going on. So with respect to pediatric asthma, we use a similar technique as with depression in that we asked the caretakers, have your child ever been diagnosed with asthma? And then we also get asked five questions. You know, does your child wake up in the middle of the night and not able to breathe and so on? And the way it's defined in the literature is if four of the five get yeses, then the child screens positive for asthma. And so once again, what you can see is large proportions of children are screening positive for asthma who haven't yet received the diagnosis of asthma. So and all together then, for example, again, let's look at Westtown now, 28% altogether compared to the national average of about 12%. And again, there's lots to think about there, but so a lot of possibly undiagnosed asthma, we broke that down by race and ethnicity and this is quite interesting and dramatic. Black children, 25%, one out of every four black children in these communities, so it's not representative, have asthma. Extraordinary, one out of four, just imagine that. But for Puerto Rican children in these communities, one out of three, just extraordinary. And there haven't been very many studies of that, but the ones we've looked at have all found stuff that's sort of consistent or in that direction. And now we have two or three interventions in Humboldt Park where a lot of these Puerto Ricans live. So remember, here's a test, how many communities were on that survey? How many? Six. And remember, we had enough funding so we asked six communities and as we've gone around talking about the survey, many other communities have replicated it. So I remember I was making a presentation and someone who worked for the Jewish Federation of Metropolitan Chicago literally jumped up in the middle and said, hey, can we do that in our community? So we said, well, you can have our questionnaire, you can have our software, everything, but we can't afford to pay for the interviewers. And he said, how much is that? And I said, oh, about $50,000. The next day I got an email from him and he said, I got the $50,000. When can we start? And so that's led, we did this survey, we've put interventions in place, so I'll show you in a minute. So that's been really great. And then analogous situations have happened with the Vietnamese community in Uptown, the Cambodian community, Chinese community, of course in Chinatown, Cambodian community in Albany Park. And so now we have data from then 10 different communities. Most of them representing different racial and ethnic groups, different SES groups, and that's what's described a lot in the book, which you'll surely wanna buy several copies of and read. Great stocking stuffer, and I'll say more about that later. But anyway, so we now have data from 10 communities, I haven't shown it to you all. But so when you put all of this together, you know it's one thing to talk about data, but I think maybe it's possible to get lost in the data and remember that this is literally a matter of life and death. I mean literally not as an expression. So for example, let me show you some of the manifestations of that. In 2005, that's remember the last year of our analysis, 34% of the black deaths in Chicago were excesses, and I use that in quotation marks, and that is they would not have occurred if black people had the same death rate as white people. 34%. Now by way of a number, when you translate that into a number, it's 3,200 black deaths a year occur because of the disparity. That is nine black people die each day due to the disparity. Nine people, nine black people every day due to the disparity, and I would rephrase that to say nine black people die each day because of racism in the city of Chicago. What I am saying, I mean it has a white man ever lied to you before. Anyway, what I'm saying here, and it's true and accurate is that in 2005, 3,200 black people died because of the disparity. And when you divide that out, that's nine a day. Every single, well not of course, every single day, but on average, nine a day died. And by the way, when the paper came out, the newspapers were interested in the findings, and this was the entire front page, this headline of The Suntimes. You've got a lot of pull. This is an article inside The Suntimes. This was the Tribune discussing it, and there are the different measures that I've shown you. Here's another way of thinking about it. We've established that there are 77 community areas in Chicago. We've calculated the life expectancy for every community area, and if you line them all up and then rank them, say from lowest, that is worst to highest, the first 22 community areas with the lowest life expectancy are all black community areas. So life expectancy is a huge problem. I said more than 90% black, and I just pulled out a few for today. For example, Woodlawn, for obvious reasons, has life expectancy, or did in 2000, of 68 years. For Chicago, it was about 74 years, and in the loop, it was 81 years. So the difference between Woodlawn and the loop, 13 years. And really, you could walk from one place to another. So 13 years on your life. And again, what we need to do is think about it. What does that mean? I mean, think about your loved ones, your children, your parents, your relatives. Just imagine 13 years to lose on life expectancy because of these disparities. Here's another figure that came out of our study. In 2005, again the last year, one of our measures, the black infant mortality rate in Chicago was 14.1 infant deaths per thousand life births. 74 countries in 2005, roughly, 74 countries had a lower infant mortality rate than black people in Chicago, lower than this 14.1. 74 countries, and it's the usual ones. I mean, you're gonna say, oh sure, well it's Sweden and Japan, but others that were not Sweden and Japan were Jamaica, Argentina, Russia, Bosnia, Puerto Rico, Poland, and Cuba, among many others. 74 countries have a lower life expectancy, and what that translates into, three black infants died each week because of the disparity. And again, I try to get people to think about it. I have grandchildren, some of you might have grandchildren, you have children, you have sisters and brothers. Think of what that means in terms of life and death. Just extraordinary, three extra black children die each week in Chicago in 2005 because of this disparity. I showed you the breast cancer data. Two black women die each week in Chicago because of the disparity in breast cancer mortality. So these disparities, this is not just a statistical analysis. This is an exemplar or an illustration of issues that are literally life and death. And then you can think about how does this get projected onto a whole community, and that's still another topic. So what does this all mean? Well, to those of us at the Sinai Urban Health Institute, and I know many of you in this room, it means we have to do something about it. Now, I love this quote from Lorraine Hansberry. How many of you have heard of Lorraine Hansberry? As we say in French, Lord have mercy. Not enough people. Lorraine Hansberry wrote a Raisin in the Sun, among many other things. Was from Chicago, live nearby on the south side, was involved in one of the major Supreme Court decisions on housing discrimination. She was amazing. She was also an essayist. And in one place, she wrote, not about epidemiologic data, but this matter of admitting the true nature of a problem before setting about rectifying or even pretending to is of utmost importance. So that's one of the reasons I'd like to talk about this or to have people like you to discuss this with. This is Ida B. Wells. And how many of you have heard of her? Well, I'll stop all that stuff. Anyway, some things you may not know is that Ida B. Wells was born a slave. And she grew up in Memphis after slavery and became the world leader, the leading person in the world in the campaign against lynching. And for that, she was vilified. She was burned out of her home. She then moved to Chicago, where she spent most of her life. And at one point, a reporter said to her, white reporter said, well, Ida, what is it that you people want anyway? And she thought about it for a moment and she said, why everything, of course? And what a wonderful response. And this data is an excellent display of the fact that that is not nearly what we have made happen. Black people don't have nearly everything that white people have in the city of Chicago in terms of health. And I'm not talking about Lexuses and flat screen TVs. I'm talking about literally living and dying. This is a Puerto Rican poet I've been influenced a lot by Daniel Consuelo-Cortierre. And she said, you know, you have it all wrong. The issue isn't the way we should talk about it. It is not to live and let live, but really to live and help to live. And that's what it's about. So all of these people have influenced, I think, how we view the situation and we wanna do something about it. There's this famous quote, epidemiologists have only studied the world. The point, however, is to change it. It's a paraphrase. Do you know who it's paraphrasing? Yes, Marx. Karl Marx was talking about other stuff, but it fits here. So, you know, and it's always struck me as being strange that so many epidemiologists will write about disparities all the time and then they say, cool, you know, they get a published, their salary goes up, but nothing changes. And so together we have to figure out how to change it. I know you will share that assessment, but it's something that haunts us, I would say, in the Urban Health Institute. So here's what we've begun to do about it in a humble way. You know, we've created what we call the Sinai Model. Again, it's a theme that runs through the book. You know, we try to do excellent research, we document health disparities, we disseminate our findings for both lay and professional audiences, and then we assemble as well as we can resources to do something about it for interventions. We try very carefully to evaluate what we've put in place and not only to evaluate it, but also to be transparent about our evaluations. You know, I think all of us collectively have to learn not to be defensive or shamed when things we are trying to accomplish don't work, because if we can explain to people why they didn't work, then the next effort can be better. It's hard, but we try to do that as well. And then, you know, the ultimate goal, say, is to improve the health of vulnerable communities in Chicago first and then, you know, maybe create models. And that's what we really want to try to do. And so that's what we refer to as the Sinai Model. Let me tell you about, we have many programs, interventions that we've put in place, some of them are successes, some of them are not successes, but let me tell you just about, briefly about three of them now and then hopefully we can have a good discussion. So with respect to breast cancer, I showed you this graph. I mean, this is a detailed version of the graph I showed you earlier where the rates were equal. By the way, that graph started in 1990. Actually in 1980, the rates were equal. Black women and white women were dying at the same rate from breast cancer. And then, you know, in 2005, again, the rate was about 100% higher for black women. The reason that happened that I've explained this is that the black rate stayed the same. You can see from these numbers it's just a tiny bit higher, not significantly so, than it was 25 years beforehand and for white women it went way down. And you know, it's interesting because I've been saying for a couple of years when I talk about this, that that's because we've made important advances. See, the graphs began to separate in the low 90s and that's exactly when we began to do well with respect to early detection, mammography and treatment. And what clearly happened was that white women were able to gain access to that and black women weren't. So that, you know, their rates stayed exactly the same. And just a couple of months ago, someone published a paper and I think I have it in my folder if anyone wants to see it, but they developed what they call an amenability index for cancer and it was about how well do we do against different cancers and in every case for all these cancers, for every case, as we started being able to do more and more about the cancer, the racial disparity actually increased. So as we've been able to do more and more, what's been happening is white people have been able to gain access to those advances and black people have not. And so ironically, as we do better, the disparities have been increasing and that's what you see here, exactly for breast cancer, but it's true in general. So when we began talking about this, a bunch of my colleagues and friends said, you know, this is ridiculous, we have to do something about it. Chris Massie, Monica's still here. There you are, Monica being one of them. You know, we all joined together and we formed what we call the Metropolitan Chicago Breast Cancer Task Force and really the call was, this is intolerable, literally, we won't accept it, it cannot be. And so we formed this task force, over 100 individual 74 organizations. We said there were these three causes of the disparity in breast cancer mortality, access to screening, quality screening, access to treatment. And since then, we've been able to get a bunch of grants, staff at office, talk a lot about the ideology of the situation. Because you may be aware, there are actually some people who think that some of this disparity is due to genetic factors. We disagree with that, we don't think it's possible, according to the data. So we argue against that and again, as I said a little earlier, just as an example, last week we had a demonstration of 500 people concerned with this problem who marched to the state of Illinois building to demand more funding for the state screening program. So I like that effort a lot and really the vocabulary and the, I don't know what to say, the ambiance around that I want to say, the ideology again is overwhelmingly that we can't allow this disparity to exist. And also we say, this is not, some people when they see health problem, they say, well, if only Cook County Hospital, Stroger Hospital could do better. So we'll give them eight more dollars and they'll fix the problem or the health department. And we said, no, that's not, big medical centers, you're not getting off the hook like that. University of Chicago and Northwestern, Russia and so on, you have to participate. This is your problem as well. And so the task force has tried to create an area wide effort around this and I'll tell you something else that's very interesting, I think, is when we started, we called it the Chicago Breast Cancer Task Force. And a lot of black women from the South suburbs came to our meeting and said, uh-uh, we have the same problem in our community. And furthermore, many of us are from Chicago. And so you can't leave us out and we said, oh my goodness, you're absolutely right. And so we changed it to the Metropolitan Chicago Breast Cancer Task Force. And I have data from the South suburbs provided by the Cook County Department of Public Health that shows actually that the disparity is even wider in the South suburbs than they are in Chicago. So really when we talk about people in Chicago, especially black people, who knows where Chicago really is. I mean, there's a border that's drawn but in terms of where the citizens live, and I mean that in the most profound sense of the word, not in this silly vocabulary we use these days, they extend very far and they need to be our concern as well. There's a report that we wrote that's online and many of our papers and publications are as well. And we work very hard, I hope you'll like it. We've done a lot around pediatric asthma as well. Dr. Siegle mentioned that at the beginning. And over the last 10 or 12 years, we've had four comprehensive, successive interventions. They require going into the community, working with people, using community health workers from the community, showing families how to clean up their houses around environmental triggers for pediatric asthma. That's why the EPA liked it so much. And working with people to do all the things that all of you know need to be done but really doing it. I mean you know we've done a little mini survey in which we talked to families we've been working with when they leave the doctor's office and we say, did the doctor explain which medication you use when and oh no, he never told me that. And you know, do you know the difference? No, I don't know the difference. And do you have an action, an asthma action plan? I don't know. And then we talked to the doctors informally afterwards and it's like they were speaking two different languages. So the doctors allege and I believe them that they've said stuff but whether they have or not the people haven't heard it at all. And so essentially the educational part of that has been a wasted endeavor. And so this goes on and on for example, you know all my great wisdom, we had our meeting with the community health workers, I said go there and tell them, the families, that they have to stop smoking. Because you saw the high smoking rates in these communities and they came back the next week and they said you know Whitman, no one's gonna stop smoking. So I said well you can't, I said well calm down. What we said to them was don't smoke near the children. So crack windows, go outside and all of them will do that. And so when we did a follow-up survey on is your child being subjected to secondhand smoke the proportions went way down. Now again, who knows about response bias and things like that. But a larger point is A, I have no idea what I'm doing and the people from the community know exactly what they're doing. And I think that's, I've been aware of that for quite a while but anyway it was nice to see it one more time. And the findings results have been extraordinary. Decreased hospitalizations, ED visits, urgent visits to PCP, interestingly schedule visits to the PCP went up but urgent visits went down. So it's been amazing, people get excited about it's the thing I care least about but it's enormously cost effective. Because you're preventing all these ED visits, all these hospitalizations and stuff. So there's a lot going on and I don't know if any of you are familiar with Mount Sinai but there's a lot of vacant building and we finally convinced the CHA to build some units and we had a big meeting with them and argued for some of these units to be asthma friendly and they actually agreed. So now they promise a 25% of the housing that they're building in North Laundale will be asthma friendly which has to do with the air stuff and things I don't understand but they were willing to do it so that's great. I'd like to spend just a few more minutes and then again I'll finish in plenty of time for us to have a conversation about some of the diabetes work we've done. So we published this article from the survey about diabetes rates is the article. I won't go through that. And the findings about diabetes were unbelievable. What we found was in the Humble Park area 21% of the Puerto Rican adults had diabetes. Again I could do several hours on this but you'll be pleased to know I won't. But when we compare that to other results what you can see is this 21% can be compared to when it was six or 7% in Chicago and the United States and even 10% or so among other groups of Puerto Ricans. So the 21% was absolutely huge and by the way this does not include gestational diabetes. We excluded that. It also turns out CDC has estimated that roughly one third of the people who have diabetes don't know that they haven't. So this 21% who say they've received a diagnosis of diabetes is only two thirds of the total and when you amp that up it's 31%. So roughly one out of three adults in the Humble Park area, Puerto Rican adults have diabetes. So I didn't believe it again and we realized again under the theme of what can we do with them to get you stop bothering us. I thought it occurred to us together that if we were able to use the diabetes mortality rates you see which is entirely independent of our survey maybe we'd gain some insight and sure enough the rates were analogous. I mean the numbers are very different but again the prevalence rate was roughly three times as high and what you see here is a mortality rate that's roughly three times as high. So two very independent sources of data leading us in the same direction. And there again you see that three times as high business. So we said when we were getting ready, when the paper was gonna be published we were aware of it. I didn't wanna go back to the community and give still one more presentation with still more bad news. So we formed the Diabetes Task Force and we said ideally how would we fix the problem and we wrote a report it's on our website they reported the Humboldt Park Diabetes Task Force and we said we wanna choose a small area of Humboldt Park comparatively small and sweep it clean of all problems with respect to diabetes. And the reason we said this is because you know I think often we want because we want to accomplish a lot or because funders demanded of us we try to do too much the results are too diffuse and then we wind up not accomplishing anything. So we didn't wanna do that again. So we chose this area I don't know if any of you are familiar with Humboldt Park and we said that's the area and we're gonna knock on every single door in Humboldt Park. Anyway it was very diverse by the way you know about half Hispanic some black people and some white people and what we said we would need is four years at roughly a half a million dollars a year to do this and then that would be good we'd create a model and it would not be lovely. So we got a planning grant for that from the Polk Brothers Foundation and then we got a four year grant for two million dollars from NIH to try to do it and then following in the wake of that just shortly after we got that we got a million dollar so-called challenge grant from NIH also to do that in North Lawndale and so for me there's a lot that's exciting in here but among other things and Eric and I would just talk about that earlier now we'll be able to compare what it's like in a black community and an overwhelmingly Hispanic community in terms of all the parameters who's answering the doors what questions do they give you and so on so it's really a promising approach we're very, very, very, very lucky and I wanna show you what we're finding in North Lawndale because those results are coming in faster so what we've done is we've hired community health workers we're going to every single door we're knocking on every single door in North Lawndale by the way which is one of the poorest communities in Chicago we're screening everybody for diabetes or risk of diabetes we're trying to get people who want it into appropriate care we have cooking classes, activity classes everywhere talking a lot about self-management and ultimately the hard measure in this field a hemoglobin A1C is our outcome and if they don't get better then we haven't accomplished what we wanted to and we will have not succeeded in this effort let me show you some data that's brand new from this and what I'm excited about I know this is very hard to read but so far we've knocked on almost 2,000 doors we've completed interviews with 1,000 families 242 have confirmed diabetes and I know it's hard to follow 290 people are at elevated risk for having diabetes according to this thing called the Archimedes risk calculator which is used in the literature and here's what this means the prevalence of diabetes in the United States now is 8% we know it's a terrible epidemic in North Lawndale what we have so far based on over 1,000 households is 24% so if 8% is a major epidemic what do we call 24% so it's just extraordinary and the 24% is low because there's a huge proportion of these people are at high risk 37% and again that's 290 over 786 and as we get them into C doctors many of them will receive a diagnosis of diabetes and that will increase the prevalence yes how do you suspect the estimates would be different if the 700 or so people you couldn't access had been included if these the 786 no that well it's closer to 800 on the second row there are the vacant they refuse the no access no answer do you think those are people who have even higher likely to have even higher well you know the theory with these kinds of surveys is that non respondents have worse health so that's possible now let me just say we've not given up on those people I mean we're going back to their houses but this is you're the first people to ever see this slide and so this is just what I had when I came here so I hope we'll be able to get a lot more of these people in this study as we go along so let me just try to finish up so it's a terrible problem by the way as you can see now I'm always worried about data like this that look hard to believe and so we saw it again on a way to triangulate on this and one thing we did was we were able to get a discharge data from diabetes and as you can see again this is about 600 in the United States it's about 200 so once again the 3 to 1 ratio just like the prevalence so it just makes the data more believable again the survey will have a long way to go and numbers might change but I I can't imagine we're not in the ballpark anyway we have many other programs to reduce health disparities smoking cessation obesity reduction you know health care for deaf people Mount Sinai serves an awful lot of deaf people so we're trying to do a lot of things some of them were failing at some of them were succeeding and some of them we don't know by way of conclusion and just have two more slides most of you are probably familiar with the book there are no children here and uh... at that time a Wall Street journalist Alex Kotlowitz a sort of follow-up to children around from Henry Horner Holmes for a couple of years now one of them was their brothers one is Lafayette Rivers and uh... he asked him well what do you want to be when you grow up and he said Lafayette did and he was maybe nine or ten at the time uh... if I grow up I would like to be a bus driver so think about that I mean when you know when I read that sentence I cried and almost every time I showed the slide I feel like crying I mean just imagine I have grandchildren that age some of you might have children brothers sisters cousins just imagine what it is for a child to have that world view and Kotlowitz didn't say do you think you're gonna live to be a ripe old agent he said what do you want to be when you grow up and the way he answered that question was this way uh... and so you know people may think that the title of my talk uh... is not nuanced adequately but but really this is a matter of life and death my way of thinking it is an indictment of our city uh... I don't know anything about ethics but I would imagine this is an ethical issue as well and just one last slide this is a picture of W.E.B Du Bois again I don't know how many of you are familiar with him he's arguably the greatest intellect in the history of the United States he wrote books led demonstrations national international movements uh... edited uh... journals was the leader of the NAACP for a long time and he and his colleagues wrote this book uh... the health and physique of the Negro American and it was they called it a sociological study we might even call it now an epidemiologic study and what they found based upon huge amounts of data that they gathered was that the health of black people was was vastly inferior uh... and that it was due to racism and poverty and the interesting thing is that it was written in nineteen oh six a hundred four years ago and now here we are still talking about the same thing so I think we have to figure out how to move forward uh... you know uh... I think we have to take it personally we have to regard this problem as if it's a problem in our family as if what we're discussing are our mothers and our daughters and our husbands and and on and on and on like that and we have to fight like hell to change it we have this book again uh... which i would urge you all to buy multiple copies of there's leaflets for it uh... it turns out by the way a little known fact is if you read the book uh... you will become taller and you will be able to eat you will be able well this is a close to that mark because you'll be able to eat as much chocolate as you want without any negative effects so i hope you'll choose to get the book thank you very very much well you've answered it yes sir so i have two simple question have they ever studied in any kind of minority as a whole level of education like a simple thing those who graduated from college as compared to dole and the second question may be a little bit more difficult if you had omnipotent power all the power in the world what would you do uh... actually uh... with respect to the first question did you all hear it it's an excellent question there are many many studies that have pursued effort to try to control for other variables to see how the black-white differences prevailed and what they found is say education or income or any of those variables sometimes they combine them is that in every single case as people's education and income say black people just as an example improve their health improves no matter how much you control for it never even comes close to approximating the health of white people so that for example if you take only college graduates black college graduates do much worse than black people who haven't graduated from college much better than people who haven't graduated from but much worse than white people have graduated from college and in fact uh... white high school graduates health is about the same as black college graduates health so the missing variable in that link is racism but it's a it's a crucial issue how much do we have to reinvent the wheel and how much can we export from other cities and specifically the data you did not show of yours that i think is the most in dieting is when you take a look at the breast cancer mortality between new york city in chicago i mean it's it's two different universes on the colon cancer side which i know pretty well i mean the city of new york to colon cancer screening rates where there was a disparity put a public campaign and with patient navigators double the rate of colonoscopy screening and reverse the disparity so if we were to say okay let's just export what new york city does to chicago wouldn't work if it didn't work why what's you know what why is our system so much more broken the new york city i think that's just a wonderful point and question whenever possible we should use other interventions you think marshal laugh but marshal oh there he is marshal chen is doing a huge amount of work trying to find out what makes interventions work is that a fair summary marshal we're trying and so i think you know delineating the characteristics and finding effective ones that's the most important thing because like you said why reinvent the wheel so that would be great uh... one indication of what is so broken in chicago is and i'd we don't have definitive data but we thought a lot about in terms of breast cancer data is that new york city roughly is twice the size of the population of chicago and they have a hundred public clinics and we have five or something and they have seven public hospitals and we have one and on and on and on and on chicago is much more segregated so we have for example a map in which we shade in the community areas that have the highest breast cancer mortality rates and then we put little red dots for where the facilities are and it's a total mismatch so wherever you would want to go for treatment you know it's far away from the people who are at greatest risk and we're not even talking as i said earlier about the south suburbs as you think about the forefront of neighborhood specific interventions to reduce disparities what might that be in the sense that what you've shown today has been more like community health workers and more again at the root sort of one-on-one individualization in a sense that there's untapped potential here in terms of some of the wider neighborhood issues and how they may be intervening up on in this disparity issues also I mean the arish wider urban health initiative or stacey lindau's south side health vitality studies you know I think are sort of working right now in terms of thinking about well how do you start mining some of this asset mapping data and some of these neighborhoods specific approaches to solutions I guess I'm wondering if someone is really at the forefront here steve your work what is the next step you know beyond sort of like this more one-on-one sort of community health worker type of approach here's what i think the key is if you go back and look at the literature and and marshal you would know this in eric and as many of you uh... in roughly in the nineteen seventies uh... the united states put into place five major hugely funded efforts uh... to improve community level cardiovascular disease and every and and and they're famous in the pantheon of the literature you know just to say the name the stanford five city study and so on like that every single one of them failed i mean they have some small successes but i i don't think there's any disagreement that they all failed in one of our chapters we summarize that literature but i think the reason for that when you and there were many many explanations and a huge literature on on these studies headed by the best uh... you know epidemiologists and in public health physicians in the united states funded by n i h generally and they all fail and i think the reason for that is is because they didn't seriously engage the community now let me just speak for a second on this because uh... i i don't know exactly how it works but i know it's important somehow the the you know now this huge amounts of money i mean millions upon millions of dollars available for what we're calling translational research and really you by and large you can't it's hard to get funded if you don't at least talk about it and so people talk about it the same way these studies pursuit it and i think that is in a plastic i would say essentially dishonest way and they say well we're going to engage the community and this agency wrote a letter for us c and we are going to ask them to pass out some leaflets for us and maybe even to speak it it's one of our rallies and i think we have to do much more than that and find serious ways of genuinely engaging the community and we thank you very much did someone clap for me uh... anyway i i anyway uh... anyway uh... uh... and what the vocabulary i use is in my mind we have to shift or help shift or work to shift the ideology of the residents of the community so that they view themselves as subjects rather than objects thanks thank you