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tv   Book TV  CSPAN  September 1, 2013 3:45am-5:01am EDT

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thank you. [applause] >> our first panel is titled methodology of race, science and health. before i introduce our moderator i want to acknowledge rich who worked with me tirelessly in pulling these panels together. ..
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>> and civil, civil liberties. he is a professor of humanities and social sciences. he says here at wfts university, so you have me there. >> tufts. >> oh, that's tufts. you know how these academics write. [laughter] okay, and visiting professor at brooklyn kenneling. please well -- college. please welcome professor sheldon sheldon -- [inaudible] [applause] >> it's a real pleasure to be moderating this panel, and my
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job is to simply put forth a question of conversation so we can get started quickly. first of all, let me introduce the panel members. to my immediate right is -- nelson, who has written the black panther party and the fight against medical discrimination to -- [applause] to her right is samuel k. roberts who has written "infectious fear: politics, disease and the health effects of segregation." [applause] to his right is jonathan metzell who has written "the protest psychosis: how schizophrenia became a black disease." [applause] and last but not least to his right, harriet washington whose book, "deadly monopolies: the shocking corporate takeover of life itself and the consequences for your health and our medical
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future." please give her a welcome. [applause] so i'm going to start the conversation among us by first asking what mythologies did we all learn from writing our books that we would want to share with the audience today and discuss amongst ourselves? i'm going to start with three myths that i learned from writing "genetic justice" which was really about forensic dna. you know, when you watch all these crime programs on tv, dna rules, it seems. so these are the three myths that i learned. first of all, myth number one, that dna profiles are like fingerprints. not true. very different.
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myth number two is that dna evidence is infallible. also not true. it's not infallible for prosecutions, and it's not infallible for exonerations. myth number three, clerking dna profiles is race neutral. that's also a great myth. so let me turn now to allandra, and maybe you can tell us what some of the myths were that you discovered in your work, "body and soul." >> good afternoon, everyone. good afternoon, harlem. thank you. thank you for the introduction, sheldon. so i guess mine are more three truths than three myths. i begin my book, "body and soul," with the sentence health is politics by other means which means to suggest that when we're talking about issues of health and science that we can be talking about test tubes and
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laboratory benches, and, you know, advanced scientific research, but we're also talking about contests over challenges to resources over health care access over access to scientific information, health education and the like. so that's one truism. the second is that the civil rights tradition, the black freedom tradition, the black protest tradition was always a health activist tradition and and a health politics tradition. so we can think back to marr cuts garvey's unia organization which had a cadre of nurses called the black cross nurses. we can think back to the powerful and brave fannie lou hamer who talked on the stoop about being sick and tired of being sick and tired and gave us the poignant euphemism mississippi appendectomy to give votes to the experience of -- voice to the experience of poor black women that were sterilized
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against their knowledge, an issue that's been in the news the last couple weeks in california. and lastly, i want to offer for you that the black panther party was a health social movement, a kind of rorschach test for how we think about black politics in the last half of the 20th century in particular. but i think what we don't appreciate so much is that they were deeply engaged and involved in issues of health activism, health equality and access to medical care services in the united states. and particularly as i discuss in my book, they were engaged in giving people information to and access to services that were under mention that we didn't know enough about, that we didn't -- that the services were underutilized or not provided enough for such as sickle sell anemia, and they also had a network of health care clinics that provided health services. and notably with, and i think given harriet's prior book that many how i don't have probably -- many of you probably know, the black panthers were
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engaged in protecting black communities from overexpose z your to the bad forces of medical experimentation. i write about one incidence of this, and i hope other scholars will carry this forward, but they participated in the 1970s in california in a struggle to stop the university of california from using, from introducing medical protocols and medical research that would have disproportionately affected black and brown men and boys in southern california. so they provided services and ways for, to respond to how black communities were underserved and also protected black communities from the way in which we were disproportionately overexposed to the worst harms of medical research. >> thank you. samuel, what about your findings? >> thank you very much. good afternoon, everyone. i, similar to alandra, i found some truths as well as some myths in my work. i focus as a historian on the late 19th to the mid 20th
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century which in a lot of ways is the era of jim crow, but also the era of the birth of modern public health in the united states. and in doing so i found that for many black communities which were increasingly urbanized communities that there was one particular disease that claimed the most lives, one cause of death which above most others claimed black lives, and that was tuberculosis. and this is a disease contrary to the myth of racial predisposition was actually one of living conditions of poverty. so in many ways we find at the very birth of public health in the united states this mythology that, well, black people are dying from tuberculosis because they are racially predisposed when, in fact, this was a way of masking system of the quite often impoverished and just plain out terrible conditions in which black people were forced to live. this was largely a product, by the way -- and not incidentally -- of racial segregation and exclusion from many jobs.
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the truth that i found -- or that was the first truth. and the myth, first myth that i found is one of the kind of race neutrality of public health, the way you mentioned, sheldon, ant the myth of -- about the myth of forensic genetics, pardon me. we tend to think in the history of public health as it being this rational science that as emerged as a way of thinking about society and epidemiology, and at the very birth of it we find racial assumptions which worked quite often to the detriment of the people it was supposed to serve. and then finally the second truth i found is that much like alandra has mentioned in her study that there has always been a black health activism. and the question is where do we look for it. if we also -- if we always think about the men, usually white men in white coats in hospitals as being the locus of health knowledge production, then we may not find african-americans in the early 20th century there.
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but, in fact, we find clubs, ymca, ywca, churches, masonic orders all being very much engaged in their community and environmental health in particular. thank you. >> jonathan, what about your findings? >> okay. well, again, thank you so much. it's really a true honor for me to be here today. i work on race and mental health. i'm trained as a psychiatrist, and i look at kind of historical trends about racial disparities in the diagnosis of different kinds of mental illness. and the research that i did for the or book and that i continue to do looks particularly at race-based misdiagnosis or overdiagnosis or schizophrenia in black men. people might know this, but starting in about the 1960s there were a series of research findings that found kind of out of the blue that all of a sudden people discovered that this illness has schizophrenia was
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being overdiagnosed in black men at rates of anywhere from four, five, six, even seven times more than any other group. and to my surprise if researching the book -- in researching the book, i found this actually wasn't always the case even though there's a long history of the relationship between race and sanity going back to, you know, slave times when we had diagnoses about slaves who ran away must be crazy and, you know, dropping mania and other things. but schizophrenia, actually, was a largely white diagnosis in the united states through the 1950s. and all of a sudden in the 1960s kind of seemingly out of nowhere there was this disproportionate overdiagnosis that actually has continued into the present day in which african-american men are dramatically more likely to be diagnosed. and this is something that is actually at odds with genetic science. the way we think about the biology of mental illness.
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because according to biology or genetics as we know it, schizophrenia is an illness that shouldn't have any race or gender imbalance because it's something that should happen at the level supposedly beneath the levels of race. it's according to, you know, biologists it should occur in 1% of the world's population regardless of who they are, where they live or how they look. so my research looks at the question of why in the 1960s particularly did this start to happen, and i also look very specifically at a hospital called the ionia state hospital for the criminally insane in michigan where it was largely a white hospital through the 1960s. and all of a sudden in the '60s and '70s, increasing numbers not just of african-american men, but actually of african-american men who had participated in black power protests and been members of the nation of islam and other kinds of groups or had participated in some way in different riots like detroit riots somehow made their
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way to the hospital, and they were diagnosed with mental illness. and so, you know, that's not a huge surprise when we think about the ways that politics and the diagnosis of mental illness have gone together in this country. but i would say that the main myths that i look at, one i've already kind of suggested, is that this increased rate of schizophrenia was somehow the result of something to do with biology or genetics. of course, a lot of people were arguing that at the time. but what i found was that it was almost entirely a social phenomenon that was linked to a series of changes, and the two i'll just put forward, one was that people -- there was a lot of anxiety about the political moment, and people really were linking political protests at the time to insanity in ways that started to make sense to people. and the second was that the diagnosis of schizophrenia had changed in 1968, and the official diagnosis all of a
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sudden said anger, hostility and projection, blaming other people for your problem. so in a way it made it very easy for doctors to see black men who were protesting as mental illness because of these criteria. so myth number one is biology. myth number two is that misdiagnosis happened because these doctors were disproportionately racist. and i found through a lot of interviews that some of the doctors were pretty well intentioned, and some were not. and so really it was the structure that they were in, the structure of the diagnosis that in a way they were all using the diagnosis. and so it was a structural issue. and so the third myth is really how we deal with race-based misdiagnosis in sigh psychiatryr mental health. our approach in my profession is often to make the clinician more sensitive to racial or ethnic issues. of course that's very important.
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but what i show in my work is that, actually, racist assumptions are embedded in the structure of health care systems. and so i argue that we need to teach the medical system to be what i call structurally competent rather than teaching individuals to be culturally competent or culturally sensitive. >> thank you. harriet, i just wanted to say a word before you get your chance, and that is in our constitution the one right that's listed in it -- not the bill of rights, but in the constitution is the right to take out a patent. amazingly enough, that was built in by thomas jefferson. and your book, "deadly monopolies," questions some of that patenting. so tell us what you found. >> first of all -- >> use your mic. >> hello, harlem. very happy to be here. and excellent question. i want to point out that thomas
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jefferson was not actually a fan of patents. he didn't like them very much. he didn't really want patents to be issued. he bowed to pressure by james madison and others. and the patenting of entities that we typically don't think of as patentable, especially things like parts of our bodies, especially things like medications that we need to live has always been hotly contested, but the people who had issues with it tended not to be people in power. they tended not to be corporations who are going to profit from them. so although there was always that tension, gradually through the laws this friendliness towards patents by people who were going to profit from them triumphed. and now we have a medical system that viewed the patent as common place, as something that's expected. i'm not sure if i addressed your
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question fully, but i think that there is a tension there, and i also think that as we were discussing earlier in the green room, we have some recent good news in that the patents on breast cancer genes that were held by -- [inaudible] have recently been struck down. i think that's a move in the right direction. the mythology, though, associate with the that that i want to address is a mythology that -- well, there are two actually. first of all, there's the myth that pharmaceutical companies like to promulgate as a rationale for doing things like patenting genes, patenting medications which may then charge you and me an outrageous, unaffordable price for, the rationale is we've invested a huge amount of money and time and interest in developing these medications. so we have a right, in fact, we have a need to charge you a lot of money to coffer the costs -- cover the costs. without our investments, you
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wouldn't have medicines for hiv disease, for sickle cell anemia, for all the things that threaten our health. that's a myth. the truth is, the reality is it's not the corporations who are investing this money, it's the federal government. where does the federal government get that money? from you, your tax dollars. so you are paying for these medications. in fact, you're paying for them twice. you're paying for them to be developed and then to pharmaceutical companies who want to charge you thousands of dollars for medications that you need to stay alive, sane or healthy. so that's an important myth. another myth i want to promulgate is something i hear frequently. sometimes you hear about research being done, and often we hear about research being done in developing countries; nigeria, brazil, cuba, thailand. and often there is a complaint that the ethics have not been adhered to properly.
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people are not being treated, are not being tested under informed consent. they don't know exactly what's being done to them. they haven't been given enough information to agree. so informed consent, other abuses that surface. and one frequent response by the company is that, well, you have to understand we're testing these drugs for leprosy in brazil, and perhaps we cut a few be ethical corners, but there's a high rate of leprosy in brazil. they need these drugs. that's a myth. there is a great need for these drugs in developing countries where they're testing drugs, but these countries do not benefit. in fact, michael kramer at harvard did a study, and he found that within a 20 of year span, i think a 24-year span, that of the 12,033 drugs invented by pharmaceutical companies, only 18 were for use
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in the developing world -- 14. and five of those drugs were for animals, not people. in the end, four drugs, four drugs out of 12,033 were devised for the use of people in the developing world, and yet one-third of all clinical trials by pharmaceutical companies are now being conducted in the developing world because it's cheaper. so that's a myth, a very important myth. so the rationale for these very high prices, the rationale for bypassing the people in the developing world and condemning them to poor health doesn't hold water. it's a myth. and i want to back up for a minute and address another bit that i addressed in my earlier book, "medical apartheid." first of all, one might say the entire book is addressing the myth, and that is the myth that was used to change the law in this country about medical research. it's a very prevalent myth that african-americans have been underrepresented in medical research. and if i say that this is a myth, people will quickly
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produce data to show me that i'm wrong. the problem is many of the african-americans who have been used in medical research do not show up in the data. the research has been done sub rosa, it's been done without notations being done, it's been done without their knowledge, it's been done in a shadowy, secret way. and it's also not necessarily therapeutic. as i detailed in "medical apartheid," a great deal of nontherapy piewsic, harmful, stigmatizing research has been conducted without being fully documented or fully acknowledged so that this mitt that we are somehow under-- this myth that we are somehow underrepresented is only true if you're looking at therapeutic research. and that leafs for the conundrum. it's not really an easy set of concepts to keep in mind, but we do have to remember two things, in my opinion, and that is that we do need, we do need to be participants in research because we need to benefit from research perhaps more than other americans.
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but we have to do so with vigilance. we have to do so mindfully, we have to do so with all the protections which leads me to my final myth i'm going to address here today, and has the myth of informed consent. most of us quite rationally believe that should we choose to engage in medical research, be recruited, that we are guaranteed informed consent. and by informed consent i don't mean simply that the researcher asks your permission, that's part of it. but he asks your permission. informed consent also entails maintaining information about the study. so you have to be told everything that you need to know to make an informed decision about whether to join the study. you have to give your consent. but that consent is ongoing. when new information emerges, we find out, for example, that red-haired people don't farewell with the drug being tested, they have to tell you that. so you have to get this constant information.
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informed consent is under assault in this country. it is diminishing very quickly, in my opinion and, again, in a very occult, shadowy way. it's not something that gets a hot of attention, not much attention at all. but the law was rewritten twice in 1990 and '96 the federal code was rewritten for people to be committed to medical research without their consent. medical culture has become more and more friendly to the idea of conducting research without asking people's permission sometimes or without giving them the full benefit of informed consent. so it's a myth that we can afford complacency about that. it's something we have to be very vigilant about, and it's something that i think we should be actively seeking to redress. we should be trying to eliminate these holes in informed consent because they're quite dangerous. informed consent is more than a philosophical abstraction.
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for african-americans with our history of research vulnerability, informed consent is a necessity. thank you. >> thank you. is anybody on the panel wanting to raise a question for another panel member? any thoughts you have amongst yourselves? >> >> i just wanted to respond to harriet just by saying, you know, i think one of the places to look for how black communities can think about responding and being more active citizens and participants in clinical research studies is to think back to the legacy of the black freedom struggle, right? which is, i think, in some ways it feels like an uncomfortable or, you know, not a place that we look typically. but part of what is so important if we can get beyond the demonization of the black panther party is the way that they were centrally engaged in conversations about medical research. they were looking at protocols, they were going through protocols for a research center at ucla and particularly
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interested in the ways in which they might disproportionately harm black communities. so, you know, one of the responses i think to the insights that you raise many your book is certainly to be more vigilant, but a way to be more individual hasn't is actually to take agency -- vigilant is actually to take agency, you know, sit at the table and take agency and understanding and finding information about research studies taking place in your community including those here in harlem taking place via columbia university. >> after i do a body of research, there is something that i bring to my own personal life usually. you know, just a higher understanding of how i'm going to interact with the world. did any of you come to some personal, i don't know, epiphanies about how you're going to interact with the health care system, with the medical system or with any of those or the scientific system
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from your research? i'll give you one example, and this is from research i've done in the past on conflicts of interest in the drug industry which is probably familiar to harriet. but if i go to a physician and this physician is going to offer me a drug, i'm not going to take it right away. i'm going to -- the first thing i'm going to say is, is this been approved for this use by the food and drug administration, by the fda? doctors have the power to give you a drug that's not been approved for that use. they have that kind of power. and if that's one thing i've learned from my research, it's how to talk to a doctor about the drugs that they're planning to give me. did any of you reach any insights about your own personal
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lives? >> i'll give the flip side because i think i'm in the unique position that i'm also -- i'm practicing as a doctor -- >> yeah. >> and i have this funny life where half of my life i'm a practitioner, and the other half of my life i'm being a sociologist, historian, kind of cultural critic where i basically tear apart everything that i stand for on all the other days. [laughter] saying that it's imbued with all these problems. and it's funny because i've had some moments of kind of overlap where i kind of -- it's part of my own schizophrenia, i try to keep the two parts of my week separate. but there have been some moments where themes from my research have actually come into the clinical practice, and one is when i was doing my first book, "prozac on the couch," that was a book about white femininity ander the r stereotypes of white women in drug ads. and i was -- i probably spent two or three months writing this critique. there was this big prozac ad
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campaign, and it was sud playing with her -- sue is playing with her kids again. she was all happy and playing with her kids, and i was saying this is a total stereotype. does this mean you have to be like a white, married woman to be mentally hell healthy? and then a woman came into my office carrying this ad, and she said, hey, docker i'm sue, and i just want to be norm. i think at that moment would have been two practicalling answers. you're suffering from a socially constructive position, and what we need to do is change society rather than treat the individual or something hike that. [laughter] i think that would have been the wrong answer. instead what i realized was that racial and gender stereotypes shaped her expectations about the drug that i was maybe going to prescribe, maybe not. and they also shaped my, the way that i would, you know, listen to them and hear what she said. so i think in retrospect the
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right answer at that moment was not to say yes or no about prozac or some drug. it's instead to say what does normal mean to you? what are your expectations about this? is what do you think, how do you think it's going to change your life. and to think through my own lens of kind of, you know, race and gender and culture and class to say that if you study culture, it actually, i think, gives you better insight into the complex symbols, symbols of power that pharmaceuticals in the medical establishment become. >> in answer i might -- i don't have a personal anecdote per se, but what i've found in my research and kind of thinking about the politics of health is the importance of us speaking with each other amongst ourselves if communities, at dinner tables and wherever you may be about health and health politics. and i say that because quite often we invest -- and no offense to my, to the physician to my right -- we invest so much
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authority with medicine. and if you read medical studies or if you look at medical journals, you find out there are these debates that to the lay public may be represented as being instead of consensus. and, in fact, they disagree amongst each other. the science is, the jury is sometimes still out on these things. and quite often things that are represented to us are just plain wrong. it's really important that we talk to each other, that we find information and think about health not just on the individual terms that medicine often will have us do which is to say in the case of mental health the may be, you know, an issue of your own problematic self-adjustment, or you could end up being misdiagnosed. or in the sense that, oh, there's genetically something flawed with you and, by the way, here's a nice little medicine i can give to you for a hefty price to fix that.
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but we need to think how our personal health is a part of our communal health and our community life as well. and those are things we quite often don't discuss, particularly in mental health, i would say. that's probably one of the new or the upcoming frontiers for black health, how we think about mental health. because too many of our mentally ill are now part of the prison system. and for reasons that are, ought to be thought of as public health and medical reasons. and we have thousands of people suffering in the prisons who ought to be getting clinical care. ..
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or holistic medicine and also often for referrals to other forms of medicine. caring for it is a tradition that in public health the social medicine tradition but very much what sam was saying about thinking about health not only as an individual issue but thinking of the issues of what we might call social health. for that to be held the is to live in a healthy community, in a society where you don't suffer microaggression every day or fear for your life going to a 711, where you can feel safe in your community and your home and your school as part of what it means to be true be healthy and community health, community-based health organizations play a large role in making this a possibility. >> has the public health
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establishment inc. violence in the public health framework, is that now a part of public health? >> there are schools in the united states which look at violence as a problem, columbia university building public health and starting to look at that as well. i don't think it is yet part of the mainstream public health. that is for a number of reasons. we don't think of epidemiology of violence where we might -- i am not sure that is the way we have to, there are certain epidemiological things about violence, ways that social structures that would aid and abet violence. if it sounds like i am counting
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my answer is because i am, there are ways in which public health can intervene but there are ways in which it was not appropriate. and it is particularly urgent, demanding at this moment, the problem of mass incarceration in prisons. there we have a problem which is a solution which causes more problems than ever solved. many people who enter the system for petty crimes or quite often no crime at all will find themselves burdened with medical and public health issues that they had not had prior to entering the system and that goes to the community as well. for public health those are two of power more urgent issues. and the caveat that public health is not appropriate to
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everything. i am aware of the issue with the hammer thinks everything is the nail. public health should not always in everything is a public health problem but we have something to contribute. >> sam is doing amazing work. addressing these questions of violence and mass incarceration, when we have strong coalitions between historians and the medical community, it is fantastic the kind of stuff you are doing. i am writing personally about race and guns and gun control and this question of violence is unbelievably complicated, a statement of fact that will surprise no one but try going out in the world and saying gun violence is a republic health issue. there are huge established industries in whole states that come down on you. look at the debate about guns.
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it is of very racial conversation that even calling it a public health conversation puts you at odds with many other tenants of public health. the question of violence is complicated at the moment. >> i want to point out in boston, we had a very serious problem with analysts and violence. in 1992 and 1993, public health epidemiology and violence initiative going on, there was someone who wrote a brilliant book about violence, deadly consequences and also the work of people like milton girl who had a problem in chicago in which he looked at the social dynamicsearl who had a problem in chicago in which he looked at the social dynamics and found some interesting things. in chicago there are no middle-class black neighborhoods. i found that fascinating.
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you can find white neighborhoods that are middle-class but in chicago it tends to be either/or. there are all these things that look as if they would be worth examination but the thing that worked best in boston was one of bunch of organizations including harvard school of public health, including a group of ministers, social worker organizations and schools formed the coalition and during the year the coalition was active there was not one fatality among adolescents in boston, not one. that kind of synergy is extremely important but also important to note that initiatives like harvard happen. i don't know what happened. i left harvard not long after that and wrote an article for the public health review, expected great things and didn't hear anything more. the sense is it has been seen as a public health initiative, and
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it is more wisely that way. the other thing is when we talk about violence i find it interesting we are only addressing half the issue. we are talking violence among black people. what about white on black violence? some time ago, violent racism such as encountered in the south by civil rights workers, that should be a mental health diagnosis. how about the mind-set of white people who kill black people? considering all the things that happened in the last week that is uppermost in my mind and also an important part of the equation. >> i want to add that that is part of my reservation as well about public health. with the best of intentions, certainly as someone who is a member of public health and has a certain investment in its mission i don't want to set myself up as a public health basher but those assumptions kerri points out that we have to
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be careful of that quite often the ndp it assumption is violence and epidemiology, and we don't ever, very rarely is it invoked except today on the stage. what is going on where there is really scary white aggression on black youth for example? that would have to be part of the question and part of the answer. >> you seem to have some ideas about this. >> looking at gun violence. the numbers bear out. we have 19,000 suicides for example. we rationalize this conversation away harriet and sam say are exactly right and reinforce stereotypes and texas farther away from the hope that we can do anything about it because it
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reinforces these cultural stereotypes. >> is there anyone in the audience who would like to ask one of the panelists a question? don't be shy. can we get a microphone? can you step up to the microphone? thank you. >> good afternoon. it is more of the piggybacking mentioned in reference to until we acknowledge the racism, until we acknowledge the attack on the african-american male, you won't be able to resolve it. when are we going to address it? anyone on the panel. >> anyone want to tackle that?
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>> i wish i knew. i agree with you. >> the collaboration you mentioned in boston where the church, board of education and everyone came together and mobilize that is the start because my question initially would be how to go back to my community in connecticut and implements something to make a difference to help our youth? known nothing else, vacation bible school this week for ninth grade to twelfth grade and the main theme was family reunion and we talk about what does family reunion in compass? with that, we went back to how people come that you haven't seen in a long time, share stories of the past and one thing i said to my students was one of the words you say now, my new gear --nigga you change it
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and take the sting out of the but the reality is still there. i asked how many of you remember 9/11 and most of them remembered and remember where they were. how many of you remember last saturday's verdict and where were you and it kind of hit them. do you remember is the steam? that is what the holocaust was for african-americans. wherever we were asked, whether -- it was the sting. now that you understand that maybe we will have more of a dialogue because realistically we stopped talking to young people, stopped having stories, we would be more free to them and hopefully open a dialogue open to take time and talk to the children and listen to them and like saying hello. so on up personal knows, a bag on this but it is an eye opener and something we need to try for
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children and the community because it starts with us. >> thank you very much for those comments. >> these organizations, they have to work together. and it may start the building. it does have to happen. >> if you give us some support that will be great. >> interesting for us because one common thread through our work is we looked to history to find instances of structural oppression and structural racism, places and responsive to it, and to see where the system
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seems incredibly slanted in a very violent way and stearns out we don't need to look to history. how open all of this stuff about stand your ground, it is their right now in the present moment. how to deal with this as it is happening so blatantly, not even hit in. >> one other way of saying it is to suggest these ideas about violence particularly as it pertains to black men and black people are foundational to american society. we want to talk about saying hello, the issues you're talking about in your specific community and if it is not only when individuals are doing, it certainly helps to say hi and treat each other better but
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there is a longer a trajectory of dehumanization and society moreover that manifest things like drone violence and manifest in long periods of social isolation for people who are incarcerated and we see in recent events last week. that is a longer problem, not only for black people or black men, it is a problem of american society written large. to think about the little things, things we can do in our communities and interpersonal relationships that can add to compassion and justice and society but also about understanding structural peace and working on both those terrain's at the same time. >> ultimately it is about the human race and we are all in this together. when a president can be disrespected in front of everybody and called a liar and nothing is done about it it
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starts from the top and goes down. all i am asking is we need to acknowledge it. once we acknowledge the problem we can start addressing it. >> next. >> i am very interested in continuing conversations about the mythology of race and what happens and colleges we as a community can interact and have better and better conversations about health care professionals. i was wondering if you all have websites, that the public can go to if their family has been diagnosed with something how do we have access to these clinical trial data bases? if you give us some names of databases as samuel roberts was saying, having conversation with family and friends as they come up and tell me they are family members or friends have been diagnosed with things, where do you go besides the internet? where can we as a public, where can we access this information
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to do our own research and the more proactive on health care? >> excellent question. there is a great deal of good reliable health information on the internet. the problem is there's a great deal of the other kind of information on the internet too. how do you separate the wheat from the chaff? i urge people research your diseases and things you are told you may have or that doctors are trying to rule out. get the information for yourself. it is critically important to talk to a physician as well. i know it is not easy. there are a lot of -- 15 minutes on average for insurers looking over their shoulders. the information is -- anything to do with your particular case. you simply cannot research your own condition on the internet.
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it just can't be done. if it could be done i would be very happy. but get the information, read it but please do not do that without discussing it with your envy. i recommend printing it out and taking it with you, this is what i found, tell me what is going on with me. otherwise you will never get accurate complete information. if you don't trust your doctor enough to do that you need a new doctor. >> i can just give you one for clinical trials. the government has a web site, a reputable website called www. you can at least find a list of the ongoing war started clinical trials in a particular disease category and then you can take that to your doctor and say are
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any of these relevant to me? those are reputable list of ongoing clinical trials that are required to be posted if they are to be approved by the food and drug administration. put in a disease category and they will list 15 or 20 that are ongoing and you can bring that to your physician. >> there are a number of support groups depending on the condition you talk about. one is the national association of mental illness, national advocates, there website is a robust one updated regularly and deal not just with dealing with mental issues but public policy advocacy as well. in terms of advocacy i want to
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really reemphasize the importance of any political mobilization. we often talk about the medical industrial complex like a huge behemoth that squashes everything in its path. we are all historians. you find out the power is very weak. at times if you mobilize in the right way and ask the right questions you can find where things for a around the edge and have an impact. that being said grassroots organizations, some of this can be very good, just a few bad leads, ask the right questions over and over again and get the right people to start asking questions is really important as well. >> i want to push back against the advice of a physician. you want to talk to a doctor but people should start book groups, research reading rooms in your
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community and information, expertise is diffuse. maybe you want to talk to a physician but i don't think it has to your personal commission. your neighbor next door will read the journal of the american medical association with you and other people. maybe there are physicians, assistants or nurses working in your community that you know. you probably know a nurse or two. and the studies are in conflict, increasingly we have to be savvy sorts of readers and consumers and patients, and all of us brings certain types of expertise. and there are 40 people and make these large claims how drugs operate based on 40 people. we want to have these coalitions and that includes people with
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medical expertise because of a particular kind of expertise. doesn't have to be your clinician, drive that -- grabbed the doctor at church and get together and read a medical journal together. it is a model from the black panther party for sure. >> a lot of local experts if you had to care for an elderly parent or someone with a specific condition you will find that person within two or three years is as knowledgeable as many doctors in a lot of ways. that person is a community resources. >> i think we have to distinguish between gaining health information, always a good thing to do, educating yourself about health which is why i agree with everything that has been said. in case that was mentioned was a case where you yourself have been told you have an illness, where you yourself are facing potential health crisis. in my opinion it is a different situation and in that case by
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liam portents to communicate with your clinician because only your condition is responsible for your health. this is the person you have chosen to be responsible for you. you have to share the information, have to trust that person. this is the only person who is -- sues responsibility it is to look at you in particular and see where exactly you fall on that spectrum and what should be done with you. you can't ask other people to do that, they won't be equipped to do that. >> the discourse is directed to mr. roberts on it. i want to know what is the defect of the food industry to the public health and also the
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fact of the fda and authorizing toxic things to their food. >> i have to say i am not a scholar of food and drug policy except that research on drugs addition treatment dealt with fda policy. there is a lot of critique of the fda--some of the cases before us. maybe two of our panelists talked about fda policy so i should just defer to them. >> the fda. the food and drug administration, often touted to be the best in the world's. other countries follow the rules very often and there are really good people who work there. as a matter-of-fact especially
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under democratic administrations, much better. the colleague who i wrote the book with, genetic justice, used to work for the aclu. you know that organization. and she went and was hired by the fda to be assistance to the director. she is a very good progress of the individual but efta like any other federal agency has political pressures on them, political pressures. that is the problem. we can't always sort out what those political pressures are, behind-the-scenes, some country might ban a chemical from exposure but the fda says no, we don't have enough information yet to ban it.
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you knows that being pressured from an industry group saying if you ban this chemical our profits are going to go down. it is a mixed bag. very good people work there, they can always decide things. it has to go up the chain of command and eventually somebody says no, we can't ban this or we can't restrict this and there are organizations out there that are constantly watching the fda, suing the fda when they feel it is necessary and these are good. these public interest organizations help us and everyone's in a wild they sued the fda and the courts say the fda hasn't done enough. that is the way the system seems to be. you have good people working for the agency but not all their decisions can be reached at the
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top levels and the fda makes mistakes. when they do they pull the drug off of the market. sometimes those mistakes are because lack of information, sometimes because drug companies don't reveal the information and they get sued so there are all kinds of reasons why sometimes drugs get on the market that they shouldn't be and sometimes food additives get into our food and they shouldn't be. the good question, have to be vigilant. >> is difficult to trust the fda. it has changed a great deal since the time when it protect americans, the fda did not allow the little mind --polydimide it prevented sick children -- there
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are many children born with a dramatic birth defects, didn't happen here. that was a long time ago. today, 40% of the money the fda receives to evaluate new drugs and new additives to food come from the manufacturers of the articles themselves. that is an unacceptable conflict of interest in my opinion. i am concerned about the economic pressures on the fda. they seem too industry friendly. they approve multiple drugs that over the objections of their own evaluate is doctors who work for the fda will refuse to approve a drug, it goes on the market for a few years, causes a terrible toll in illness and death and is cooled from the market often not by the fda but the manufacturer itself. why? because the manufacturing, the manufacturer can put it back on.
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the fda is too compromise in my opinion. >> i was going to make the same point. i think the relationship to industry right now is something people should be wary of because there is all this other nefarious practice, ghost writing research articles, squelching negative studies, things that a brief career as an expert witness testified against the drug industry, i found out i was very conflict of veraverse s a bad witness it was pretty terrifying, something to be wary of. i had to tell patients of mind to trust drugs with longer track records even though there's all this pressure to get the new drug or something but to trust drugs that have been on the market longer for this reason. >> i would urge everyone to read
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summer 2011, the american scholar. cover story is about exactly this issue. how difficult it is to trust the fruits of medical research, partly because the people who run clinical trials do a great job, they can't catch everything. they can't give you correct information if they have been lied to themselves and also partly about how the fda has been less than vigilant in keeping the drug off of the market. american scholars 2011 the title is lacking for big pharma. very objective title. >> thank you very much. more and then you expected. >> thank you very much. my question is in relation to informed consent. ..
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>> the patents -- >> oh. >> yes. >> um, i think the last question first is easier. patents should not be banned, but they should be much more strictly controlled. and, in fact, that's what most other countries do. they permit patents, but they do not permit as many patents as we do. they don't permit a 20-year patent life which a company can easily extend by various, you know, manipulations. we have too many patted edges covering too many things --
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patents covering too many things, and we allow them to persist for too long. they need to be tightly reined-anyone and controlled. a company holds a patent on a medication but they are making the medication at too high a price, $20,000 a year, or if they are not making the medication but holding the patent so nobody else can make it, then there is a regulation that says the government can step in and say you're not using this patent correctly, we're going to pay you a fee and give it to another company so they can make the drug at an affordable price, or they can actually use it and make the medication. this is in the law, it can be done, and countries like brazil and thailand do this. we are reluctant to do this for medications. we'll do it for electronics and tv and things like that, but we don't do it for medication. we need to do that more.
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in terms of informed consent, what you're referring to as a sugar pill, doctors call it a placebo. one group gets the active ingredient, and the other group gets the placebo or sugar pill. those studies are not always appropriate, they should not always be done. be you have a life threatening illness or very serious illness and you're testing a medication for it and you're testing what you think is a better medication, you hope is a better medication, and another one already exists, you can't give the person the placebo. why? was that mines -- because that means they're not getting any treatment for this illness, and that's wrong. what you have to do is you can give one group the standard of care, the regular medication people are already using, and you give the other group the medicine you hope can be better. placebos can't be used as frequently as they used to be used in the past. informed concept, of course, is something altogether different.
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that's when you don't tell someone they're in a study, or you don't tell them all the information. youyou should tell them about te study. or you don't share all the risks of the study and other information. and that is a, like i said, the serious problem here because it's not that that many people are affected so far, but we're not talking about a small number of people. the study that tested artificial blood only involved 720 people in the u.s. and canada. 720 people is not a lot of people. but at the end what did they find? they found be what they were testing caused more heart attacks and deaths than the regular standard of care. so you had people dying in the study who never knew that they were part of medical research, who never knew that they were in the study. and even worse, the very year the study ended a new study was started. the research outcomes consortium study which involved 21,000
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people in the u.s. and canada. 21,000 people enrolled in studies where no one tells them they're in research. what happens is they're trauma victims. so ambulances go to attend to them, sometimes take them to hospitals. instead of being given a standard of care, they're given experiment alamo call theties, a whole variety of them, including things that are patented. and why do i point this out? because the patented valve is going to make money for someone if it's approved. and yet these people again, no one asked their permission. in many cases they're not even important. according to the protocol of the study, you don't even have to tell them they're in the study, and this is a very, very dangerous precedent for a country that has a long history of abusing people through the use of studies that didn't use informed consent. it was bad enough when people did it and could be called rogues or renegades because there's nothing sanctioning it.
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now people are doing it, and they're protected under the law. the rationale is that trauma victims, you know, they've been in a car accident, they've had a gunshot wound to the heart, trauma's a very broad category, and the rationale is that we need to do the research. but these people are not in any shape to give consent. but that's not true. number one, no one has tested how many of these people are able to give consent. i talked to one of them. i found one and i'm not even a researcher, so i'm sure there have been other people that were able to give consent if someone had asked them. and the other problem is there's an assumption that the research is more important than the person's right. the fact is some medical research you just can't do. this may be a case where you say if we can only test it on people who are unconscious, then we can't test it right now. and you give that unconscious person something that you know is going to help them. you know? perhaps we are turning our back on modality. that'll be very helpful. but until we find a way to test it about violating people's
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rights, i see that as a big problem. so i hope i answered your question. >> jonathan, did you want to respond? >> i'll just say one thing really quickly because i know we're getting towards the end here, but it's interesting because like now a lot of times when people call medical clinics or if they call the psychiatries clinic i used to work at in michigan, they'll talk to somebody about research before they even see a doctor or something like that. the relationship between especially medical academic centers and research right now is very close. almost -- i mean, some people are seeing researchers and, you know, while they're in a time of crisis before they're even getting treatment and stuff. so i think these issues are going to be increasingly important as we move forward because it's how a lot of academic centers are getting funding now, different kinds of research. >> one of the things i've learned over the years is try to avoid drugs as much as you can. [laughter] try every other method that you
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can think of -- diet, whatever. [laughter] [applause] you know, there are times when you can't avoid it, you know? antibiotics. and if you can't avoid it, you can also ask questions like the questions harriet's -- first of all, you can ask how long has this drug been on the market, because if it just came on the market, we haven't tested it on enough people yet to know how safe it is. but there are always going to be side effects. almost every drug has side effects. and if you're the lucky one, you won't get it. but, you know, try to avoid it. doctors -- and they're all good intentioned -- will want to give you something even if it's not necessary. and you have to decide yourselves what's necessary, how
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low do you want your cholesterol to be. [laughter] you know? so anyway, there's another -- >> another question. >> all right, thank you very much. >> hello. my father recently died. he had crucial felt jacob disease, cjd, and my question -- i didn't think it was here in america, i thought it was a myth. i didn't see any african-americans with it. so now i know. he's passed away, and i was just wondering since you all are in the health field, is there any study, any research, any information out there of how many african-americans are dying with this disease? because we've been going to workshops, we've been going to conferences, and there's not that many african-americans there. and i haven't seen that many -- i haven't seen much literature on it pertaining to african-americans. so just wanting to know do you know anything, any books, any researchers, anything out there?
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because i want a different perspective than what i've been getting, and i just want to narrow it down to african-americans and how it's hitting that population. >> well, i think jonathan actually is -- one thing i do want to say, though, is i spoke with laura -- [inaudible] who's a researcher at yale who studies it, and she told me it's her opinion that many cases of alzheimer's, dementia in this country are misdiagnosed. and it seems as if it's hard to get a handle on precisely how many cases there are. >> right. >> it isn't something that's not looked for routinely, so that means it's really hard to get good data on how many people have it. >> okay. >> let's exchange e-mails after the panel -- if thank you. >> -- and i can find out for you. i do think there are related forms of enreceive lop think, i mean, i don't know the racial breakdown for cjd, but i do
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think there are other forms that have been studied more globally, and this might be data outside the united states. >> okay. >> is it a myth that mad cow disease doesn't exist in the united states? >> yes. [inaudible conversations] >> yes, i thought -- i didn't think it was here. of when they diagnosed my father with mad cow disease, i thought what in the world? i'm thinking, i'm like, mad -- are you serious? and i didn't think it was real. and then when i started looking up, no black people. okay? >> i ask a question about that, i'm very sorry for your loss. you know, my condolences. what are you looking for when you say you want information about black people? >> because -- [inaudible conversations] >> with regards to mad cow. >> because you, because it's already rare and you don't know anything, okay? >> uh-huh. >> and then you find out when you do look, when i do go on the web site, it's all white people. so i'm like, okay, is it hitting black people? do black people catch it?
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>> we all get -- >> i know. but this is the stuff that -- you asked me -- >> yeah, no, i'm just trying to -- >> what i want to know is how with cancer you may be able to find out how many people have cancer, you want to know about your population. does it hit african-americans differently than it hits caucasians or chinese. i just want to know how is it affecting us as black peoplement because it's so rare by itself, and then on top of that you don't see that many african -- when we've gone to these workshops, i can count on one hand how many of us are there. so i'm like, damn, why did my daddy have to get it? how did he get snit so i wanted to know is there information out there, how many black people do actually catch it, any other minorities get it. i just want to know. >> thank you. >> yeah. well, you know, without data it's hard to know, you know? >> uh-huh. >> but the fact that it's not
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very visible among black people as you already suspect, that means nothing, you know? it's recently the case that these will be written about at length. in fact, you often see language like, um, very prevalent in this group of people. >> uh-huh. >> which i may be but sometimes i've looked into it and found out it's more prevalent in african-americans. >> is it just not being documented? because you're right, the way to diagnose it is very -- my family pushed, and we kept pushing. we're even getting the death certificate changed. >> good for you. >> so we're different. i'm wondering how many families are being misdiagnosed and how many more african-americans do have it. >> right. >> that's what i was wonder, in the health field, are african-american doctors talking about it? is there even an interest? is there research out there? >> well, misdiagnosis is, you know, certainly likely a problem. it's also the case that african-americans particularly if they're poor are less likely to have access to health care. and so when you're talking about this kind of rare disease, it sounds like your family poured a lot of time and resources into
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keeping your father with you and lots of people don't have access. so that could be part of the reason why we don't have data that might yield some of the answers that would be, i think, both intellectually and emotionally important for you and your family. >> thank you very much for your question. i think we have time for one more question. questioner? >> yes, thank you. i got the last one. i've already been coached to keep it simple and quick. i'm going to do so. dr. meltzer, i was listening to your presentation, and you mentioned something about in the '50s it was primarily the schizophrenic diagnosis was primarily for a white population. then all of a sudden, and you used the term out of the blue, it became something that was popularized for african-americans. and i'm wondering, i wasn't quite clear whether you were saying that when you say out of the blue whether it was they genuinely ignorantly started to make this misdiagnosis, or were they more like being dumb like a
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fox? in other words, needing a population that they could study, evaluate and do some different kinds of treatment with modalities? and my last part to the question is, is it coincidental that there were certain types of controversial therapies like shock therapy and, you know, in that sense that seemed to occur at the same time, and is there any connection. thank you. >> i'll just say very quickly because i know we're short on time that part of the point -- thank you, it's a terrific question. part of what i think we're all studying, i don't want people to leave or here and think like, oh, man, there's no hope for any of us, you know? like whatever. so it's more when you spend a lot of time studying particularly issues about race and ethnicity in the medical system, on one hand i think -- and hopefully you've heard this from this panel today, there's a very genuine need for people to get information. doctors want to help people a lot of times, but a lot of times there are these moments where the racza


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