provider. >> here's a look at some upcoming book fairs and festivals happening around the country. on may 19 in maryland, it is the gaithersburg book festival which has been held on the city hall grounds since 2010. later in the month love for us in new york city at the publishing industry is annual convention book expo where we talk with publishers and authors about the forthcoming books. then we will be in chicago. the next weekend the fdr presidential library and museum hosts the result reading festival the day of author programs and the like and tenure america's 32nd president. june 21-26 is the american library association annual conference held this year in new orleans. for more information about upcoming book fairs and festivals, and to watch previous festival coverage click the book fairs tab on our website, booktv.org.

>> good evening and welcome to common good books. we are very happy to welcome maya dusenbery . she is award-winning. an economist. before becoming a journalist, she worked at the national institute for reproductive health. she is a minnesota native and please help me welcome maya dusenbery. [applause] >> thank you. how does this sound? [laughter]

okay. how about that? like this? really? testing, testing. how is this? how about this? [laughter] hi, i am maya. i'm happy to be here in my hometown. not far from where gore peered at that object about the book and how that interested in the topic and do a pretty short leading before opening up to questions.

i've been doing this for almost a decade. i've written a lot about policy issues in that capacity but it really wasn't until about five years ago when a.rheumatoid arthritis that i started sorting thinking about the medical system and how it affects things that were playing out more broadly than just reproductive health issues. and so learning a lot about autoimmune diseases which is the weight affects women. and it is estimated 59 million people in the us. i was sort of confused about why this epidemic did not seem to be on the public radar and also to start to realize it was sort of off of the medical system reader as well. actually, a pretty good experience myself getting diagnosed. i got the frequently started

treatment. i started a lot of people have these long diagnostic delays and go to for doctors over four years before they are properly diagnosed. and during that time a lot of them report feeling like their symptoms are really dismissed, not taken seriously and sort of just written off as stressed out, hypochondriacs. so that was my entry point into thinking about these issues and as often happens once you start asking people about their experiences, you start being a collective stories. that are very similar. a study hearing other stories of women who had a range of conditions and hadn't really, they felt like their symptoms were minimalized or normalized. sometimes just disbelieved entirely. this book tries to dig into why that is and makes the case that they are sort of cubic systemic

problems that have sort of become intertwined and are really affecting the quality of care that women receive. the first being the lack of knowledge about women's health and their bodies and symptoms and this is really first put on the radar in the early 90s. which seems like a long time ago to me because i was too young to remember it. but at that point, there were congressional hearings on this problem, advocates pointed out that women were really underrepresented in clinical research at the time, the national institutes of health had a policy that urged researchers to include women but didn't seem to be enforcing it at all. there were major foundational studies that were done and 20,000 men and zero women. as nobody really thought it might be a problem.

at the time the fda was actually explicitly excluding women of childbearing age from early drug trials and there was a general tendency about including women in drug research. that really sparked some big changes including a federal law that required women were included in federally funded research. i was surprised to learn how little has changed or how slow the progress was started in that period. a lot of new, scientific knowledge has emerged as rome became included studies and there was greater funding for conditions that disproportionately affect them. i sort of have this impression that the medical system on the scientific cutting edge, the existing knowledge and be incorporated immediately into

medical education. and nothing can be further from the truth but it's actually these are just very slow moving institutions and so a lot of that knowledge was just not yet sort of at play in clinical practice. i think we are seeing where this knowledge is that we've been slowly trying to close for the last 3 to 5 years. which is not really not there yet. i know that i didn't really appreciate that before i did this research. the other problem that i believe is really related to that is when i start calling the trust gap. my study hearing the stories of women who just really felt like their symptoms were not, reports of the symptoms are not believed by doctors. and i don't think at first i thought this was yet another

realm where women's voices were not being treated with the same authority as men and it was not terribly surprising to me but i think i came to see there is a real sort of deeply embedded reason for this within medicine. and i kind of go through the history of hysteria in the book and in the 19th century there was a label for any mysterious symptoms in women and really sexist theories about it. trying to get back to a -- and the 20 century, instead of as this physical disease it was seen as a psychological disorder and the conversion of mental stress and physical symptoms. ever since medicine has had this concept which is very convenient, any physical symptoms can be attributed to

the patient's unconscious mind. which of course, becomes a big problem if you have a group of patients like women who have not been studied and included in research. and so they have a lot of unexplained symptoms. and so, i think this has created a mutually reinforcing problem where because of this large gap women have more unexplained symptoms. whether those are symptoms that are unrecognized by the food and drug that was not studied in women at all or that the system is just not good at recognizing and diagnosing. but for the more doctors that women see for those type of symptoms, the more doctors get the impression that the offices are -- women have symptoms that they can

it must be on their head. i think that the knowledge that this kind of created this stereotype that i think is really impacting women. i think in some ways, the way these two dynamics played out has made this very deeply entrenched so it is perpetuated despite the best intentions of i think most healthcare providers. they very much want to be treating the patients the same and sometimes i think actually they don't even know that they are not. because this has become a really systemic and unconscious bias. that is the case laid out in the book and i'm just going to read a section from the chapter on chronic pain. chronic pain affects 100 million people in the united

states. which is an enormous number of people and it gets very very little funding. and has really been sort of a neglected overlap thing.and part of it is that for a long time, showed any unexplained chronic pain was seen as psychogenic. there has been a shift over the past few decades to kind of have a new understanding of chronic pain. but i think that it is pretty clear that part of the reason that in his is not happen until now is that chronic pain disproportionately affects women. so this is a section talking about that transformation. >> we assume that medicine is transformation in our understanding of pain. on the contrary, many doctors seem pretty satisfied with their existing explanations for

unexplained pain. according to -- this was not embraced first. emotions are generally not very well received initially. particularly by physicians ugly pain and absence of pathology we do individuals speak seeking work or related compensation. opioid drug seekers and patients with psychiatric disturbances. i.e., liars and hysterics. essential amplification of pain might be a real meta-biological phenomenon. the one that contributes to the clinical pain conditions seem to them to be unlikely. most clinicians prefer to use diagnostic labels like psychosomatic or disorders to define pain conditions they do not understand. it is generally not just a coincidence that most of these are women. to be sure though, the lack of knowledge about chronic pain has affected all pain patients male or female over the years. certainly, many men with chronic unexplained pain have

been encountering their fair share of doctors at -- that dismissed their symptoms. they have seen this play out as an advocate for women in pain over the last two decades. they developed complex regional pain syndrome, cips after she pulled a hamstring of the promising belly dancer in the 80s. this effect over three times more women than men as a poorly understood neuropathic pain condition. imaging injury which can be as minor as a small cut can trigger disproportionate pain often accompanied by swelling, skin discoloration, excessive sweating and changes in skin temperature. the pain spreads beyond the original injury to the whole

body. -- long dogged by psychosomatic suspicious business days approximately 55 new cases of this are diagnosed annually. experts believe the true number is likely higher since patients particularly those with the type not linked to the nerve injury continued to be accused of inventing or exaggerating pain. to think hamstring pages never goes away. a year and half later similar burning pain develops in her opposite leg. after another six years, the pain goes to both arms. for five years and ravished vocal cords leaving her unable to speak. but for over a decade she went undiagnosed or would have to prove that we are really in pain she says. i spent 13 years being disbelieved. one dr. suggested she take a truth serum temperature is making it up. another thought that the pain was a manifestation of stage fright. eventually, reliant on a

wheelchair and at times suicidal, she was accused by one dr. of enjoying the secondary gains she was receiving from her attentive partner. she tells it when other women with chronic pain share their stories with her, typically, one of the first things out of their mouth is, i'm not crazy like the doctors tell me. this is focused on women's payment you will occasionally hear from men with chronic pain. she is always eager to learn about their experiences. in many ways, the men's stores are just like the woman story facing frustration with doctors offering few answers and even fewer effective treatments. the same escalation from friends and family who cannot truly understand. but they often have one glaring difference. men do not offer a preemptive defense of their mental health. they will ask if doctors

disbelieved you. men were always believed and that is something that women were not given. women with chronic pain face the same challenge as woman with acute pain. how do you demonstrate how much pain you are in without being seen as either hysterical or else not much pain at all? so onyx blamed chronic pain that in the needle is often an impossible feat. with no observable cause of the pain the patient's expression of it is the only evidence for it. but women's expressions of pain whether through words, grimaces or tears are so often viewed as emotional that many women with chronic pain feel as though they need to be ultra stoic to be taken seriously. in 2002 new york times article a pain specialist at northwestern university described how acutely aware of her fellow healthcare providers and how her fellow healthcare providers interpreted women's

-- she was coaching of patients and how to use every resource they can muster to not cry before referring them to other doctors. but of course, if the goal is to better demonstrate the severity of the pain they are obvious risks to downplaying it. women with chronic pain often report trying to be anti-hysterical to the point of actually being dishonest about how much pain they are in. as the authors of the 2007 study of doctor-patient interaction and chronic pain management, fema patients must strike a balance between conveying their pain experiences accurately without inadvertently undermining their authenticity by being perceived according to negative gender stereotypes. as lawrence case,, while the response to pain may be expected, it is not expected in women. a person saying that their pain levels attend but no emotions

can be bad. -- as the title of the 2003 qualitative study concluded, it is hard work behaving as a credible patient. based on interviews with patients in norway, explored the works that these women had to do in order to be believed, understood and taken seriously when consulting the doctor. quote the efforts reflect a balance not to appear too strong or too weak to healthy or too sick, too smart or to dis-arranged. they described walking a tight rope of being assertive but not to assert. they had to fight. one patient explained you have to tread rather softly because once you antagonize them it is not certain you are any better off. the exhausting balancing act extended to also have a look. to put together and they had a harder time being perceived as

seriously ill. many of the women reported feeling as though they needed to adjust how they dress like you always look so healthy coming from the doctors. she recalls her mother saying not to wear make up to the doctor. they have a strong beautiful healthy bias especially when it comes to women. in 1996 is that a show patient's judge attractive or perceived by the doctors to be experiencing less pain. a finding that held only for the female patients. while those with unexplained pain conditions face especially uphill battles and attempting to be a credible patient, woman with many kinds of chronic pain complained that healthcare providers do not trust their reports. in 2014, they turned up with national pin report to conduct a survey of 2400 women with a range of pain conditions. including fibromyalgia, back

pain, osteoarthritis, migraine and neuropathic pain. over 90 percent of them felt the healthcare system discriminated against female patients. over 80 percent felt they had been treated differently by doctors that a man would have been. and two thirds say that that the doctors took their pain less seriously because they were women.what represented a dr. told him that pain was all in their head. nearly 60 percent said a dr. admitted to not knowing what was wrong with them and three quarters have been told they just have to learn to live with their pain.almost 1/5 had been told of pain was a result of childhood trauma. over half have been told, you look good so you must be feeling better. physicians turn pain patients also have the bias that the female patients face. in a book, some of the most striking perspectives come from doctors who, was they found themselves on the other side of the equation, were shocked to realize how poorly the medical system understands pain.

a few male doctors thought was only their gender and medical expertise that prevented them from being disbelieved. one doctor, an allergist and professor of medicine had to diagnose yourself when a broken toe turned into this. the doctors that she saw as well as many dr. friends his brain she picked did not have any ideas. it was only because i was a physician had the knowledge and resources to help research my care myself, she said. if she had been the average female patient with crps should know that i will be institutionalized by not been a physician. and had been so persistent. and on that note! [applause] yes, perfect. any questions?

[inaudible question] >> yeah, i did not look too much into insurance. that sort of seemed to open a whole can of worms. but certainly, did talk a bit about how the generals, the barriers to access to the healthcare system. obviously, become sort of even worse problem if you have a lot of insurance or you have other sort of financial or logistical barriers that make your access to the medical system tenuous. that can obviously make some of the issues that i discussed in the book that are sort of based on what is actually known in medicine and how doctors treat patients. that is sort of a moot point if you cannot see a dr. at all. but also, i think those kind of problems really just tighten

the states here. where a lot of those women in the book, they ended up going to many, many doctors. seeing so many specialists before they were finally diagnosed and got the help that they need. for so many women that is just not an option. you're dismissed once or twice, he might not be able to literally afford to see another specialist. so i think that is a huge way where it sort of creates this divide where only the most, very privileged people can really become these self advocates and fight persistently and put in so much of their own sort of financial and time resources. they end up being the ones who are able to get any care at all. >> are you aware any groups or centers where they acknowledge this and try to integrate this knowledge into their culture? like i heard something about a

clinic in wisconsin that deals with headaches. with pain management for migraines and things like that. you know about any, enlightened -- >> yeah! the question is if i know about enlightened people in medicine doing work around these issues and certainly, i think there are definitely, a lot of good pockets of work happening. since the 90s really, a movement of sex and gender specific medicine where people who have been looking at these differences and going back and looking for instance, and heart disease which was studied almost exclusively in men for the first 35 years. it was studied in the last 20 years, it has a lot of women's

health -- women's heart health experts have gone back to say we need to go back and see if there are differences. there actually are. there differences in symptoms and risk factors and the whole female pattern for heart disease that is now recognized. and so, i think there is a growing recognition that like that knowledge needs to get incorporated into medical education and that i think the challenge is that the way the system is set up is that you know, every tool has different curricula and there's not a way to just wave a magic wand. now everyone should learn this, you know? and the statistic is that they take 15 to 20 years for any new scientific knowledge to go from bench to bedside and be incorporated into clinical practice. i think it is in this case, they are calling for to make

changes across the entire curriculum in every area. i think there has been some flooring recognition that that is what needs to happen. at mayo, there has been a clinic for the last two or three years that got together, representatives from each medical school and to talk about these issues. another helpful sign that i have heard is a lot of medical students and younger doctors are asking for this knowledge and are more aware and also our very much sort of putting pressure to say why aren't learning this then two which i think will help things as well. >> how does the medical community view your book? >> i guess, it is a reason. there certainly are a lot of

leaders in medicine who are quoted in the book and i think are supportive of it. and -- yeah, we will see. i hope -- i hope it sparks some conversations with in medicine and another helpful thing that i found in the research was a lot of women, or a few of the women i interviewed who had these experiences as patients that were really frustrating and they actually then went into medical school and it inspired them to go into the field. which is very impressive. so i feel like yeah, i feel that there were a lot of good, young doctors who were thinking about these issues much more. who hopefully will be rising to positions of power quickly.

>> questions? question we each said our doctors a copy of this book? [laughter] that was a real dream of mine. yeah, i think so! one of the big things i learned that was really shocking and also very helpful to understand it is that, is on the last 10 years or so that people have started to really say that diagnostic errors and problems, misdiagnosis and delayed diagnoses have been a blind spot in medicine. and has been something that hasn't been really tracked systematically and his line the last several years experts are saying it looks like this is a big problem that we don't even know the extent of the problem yet. and really, point out that a

lot of doctors have, they are overconfident. they rate themselves as really great diagnostics. just like most drivers think they are above average. ... >> and so they have the impression that they were right unless they

hear otherwise, and so they assumed that that woman was really just, like, this stressed-out hype hypochondriac. so i think that was helpful to see how this is self-perpetuating despite the best intentions of everybody involved. i don't even know how that related to your question, but -- [laughter] >> you really should be going to the ceos and cios of health systems because they are in charge of what the doctors are doing. i mean, i've been a practicing provider, now i work in tech doing that kind of stuff. >> oh, great. >> but it is really funny to think about what you say about the last -- i don't have a question, i just have a conversation. [laughter] the last ten years in the sense that that's when we all got into meaningful use and having to lose our contact and touching people and really getting into that interaction where you get to understand and get a really good diagnosis. but what aye learned -- i've

learned recently is just how much weight those executives, so literally if you know anyone that works in the administration of a system whether it's health partners or hospital or you're a provider, in one of those, those are the people -- i mean, all doctors should have this, but those are the people that need this book now because, actually, their ears are totally pinging to this. i'm going to use the language of people today, they're paying attention. and, because they know we are upset and smarter than we have ever been probably just because of access to information. >> yeah, definitely. good luck. >> i think it's the conversations i'm having every day. >> yeah, yeah. thanks. >> so what's next? is this leading you to follow some similar topics, or -- >> yeah. so what's next, i mean, i think there's actually so much that,

and i didn't have space to include in the book, so i'm working on wrapping up a few articles that will come out kind of talking about related issues. but, yeah, i agree that it sort of -- it really feels like, the time just feels really ripe to sort of put this on the radar in a big way and, you know, with all the me too movement and sort of the new consensus we seem to have that we should be listening to women, like really trying to capitalize on that to really put this on the radar. because i do think it's been a sort of strangely overlooked feminist issue that has, yeah, definitely has not gotten the attention that it deserves. yes. >> did you also look at racial disparities? >> i did, yeah, yeah. so i talked a little bit about the intersection with various

biases that, obviously, are huge in the medical system including racial bias, and especially sort of i think one of the big differences that a white woman like me and a black woman would be perceived. the black woman -- well, the woman of color, especially black women, really being impacted by this stereotype that they're drug seekers. i think, actually, a couple of different women in the book sort of eventually got to the point where they were reporting pain, and it was unexplained, and so they were accused of trying to seek painkillers. but for the, one of the women of color whose story is in the book, that sort of stereotype just was, like, front and center every time she went into the medical system to the point where she, like, couldn't even get past the e.r. gatekeepers because it was just sort of an

automatic type of assumption. which i think seems to be a problem that's maybe even worse now that there's sort of a lot of, you know, justified focus on the opioid epidemic. and i think that really has been impacting chronic pain patients who are disproportionately women and people of color and low income people. and then on top of that sort of impacting these groups like women and patients of color who are even more likely to sort of be disbelieved in that way. >> did you find any different behaviors with women physicians or men physicians in terms of believability of the women? >> yeah. so the question is if i found any differences between male and female physicians, and i think sort of the anecdotes in the book, i think there were plenty that were from, you know, feeling dismissed by female physicians. and i didn't really come across

much, like, systematic research looking at that question. but my personal opinion is that these are really -- the big problems are really about sort of what is taught and these unconscious biases that i think women are not immune to. so i think that -- i don't think that there's sort of any guarantee of getting better care from a woman. but, you know, that isn't to say that i don't think that, you know, it's important to get more women into the medical system, and i think that they, you know, do tend to be bring sort of a different perspective and ask different questions, and, you know, do more research on women's health conditions. and sort of just on a kind of experiencial level, i think there's a lot of value are in having people who, just by virtue of being women, are more likely to have, like, migraine orfy promyalgia or be close to

somebody who's experienced some of these conditions that have been really neglected, and i think because they affect women. so, yeah, might have more basis to sort of empathize in that regard. >> i was going to say, did you get any empathy training conversation in the book? like, did you talk about that at all? it's sort of also a hot topic in medical schools right now. >> yeah, i didn't, i didn't much. but, yeah. yeah. [laughter] put that on the list. >> what's one of the most surprising cases or stories that sticks out in your mind when you think about all the women you met and interviewed and -- >> yeah. that's hard to choose just one. i think what was powerful was actually just seeing sort of the patterns across all of these stories. you know, i had -- i sent out a google doc where people just

wrote their stories, so i got almost 200 and then did follow-up interviews with people to sort of get more in depth. but even just like looking at that, i think, was -- yeah. seeing the patterns and i think when i started the research, i didn't actually realize that there was so much silence around these experiences where, like, i think a lot of women sort of internalized the dismissal or thought, you know, assumed that it was just sort of bad luck or that maybe they could have done something more to, like are, advocate for themselves. so, like, attribute it to their own failings. and i think that's totally understandable, because i think that it's something where when you're just seeing, like, one experience in isolation, your own, i think it is sort of hard to see the big picture and to imagine that maybe it's, you know, maybe it's not just you. so that's one thing that i

really hope it will even just for women to kind of see their experiences validated and see that they are not alone in that and that these are shared experiences will be, i think hopefully, powerful for women. and, like i said, because of this lack of feedback, i hope it will be powerful for health care providers too, to realize that this may be happening more than they assume it to be. that's a good way of not answering your question. [laughter] other questions? >> this isn't so much a question, but i was thinking about the unconscious bias which is so pervasive and intractable as an entrance to this issue. and i work at the u and, you know, the medical school has, like, a diversity office. we have a strong ec with bity -- [inaudible] -- equity. i was one who said send this to your doctor. but from that perspective,

because people -- i think the, some establishments are more interested in discovering what is this about. and this is just such a powerful example of it where, you know, the whole historical legacy of so much we are dealing with, i've never thought of the historical legacy of women in hysteria or women and feelings or all those things that you point to, it was very powerful. so it's just another way of getting at this. >> yeah, yeah. and there's, i mean, i think that's another area where there's definitely more interest and implicit bias, you know, all sorts of implicit bias. so i think, i hope, you know, like i said, i do hi there is a lot of -- i do think there is a lot of work already happening in the medical system, like, focused on various aspects of the problem. and so i hope that maybe one thing the book could do is sort of tie these things together and kind of show a larger context to really support that work and

point out why it is necessary. >> i have a question about ma term mortality. i've been -- maternal mortality. i've been reading about how in the rest of the first world it seems like rates are declining, but in the united states they're rising, and i'm wondering if your book touches on that at all. >> yeah. so does the book touch on mama terrible mortality -- maternal mortality, it does not. i had planned to talk about that and then decided to leave sort of all of routine reproductive health out of it. even though that's -- and i have a background in that. but, yes, i mean, i think i have also been reading a lot of the great work that's being done on this issue. nina martin and, who is the npr reporter? >> [inaudible] >> yeah, yeah, the propublica/npr series has been really phenomenal.

and i think one of the things that i really liked about that series is that they've done great job of kind of showing that these, this problem is not just about sort of lack of access to care or health disparities, but really is sort of about treatment disparities. and, you know, black women have, like, four times the rate of mortality to white women and that is not just due to, like, higher rates of health conditions among them, it really is sort of about racism and sexism. so, yeah. that's one of the things that i'm, like are, really hoping that people who have been working on that issue sort of talk about some of the ways that the things i talk about in the book sort of play out in that context. because i think they absolutely do, i just didn't include it in the book.

>> i'm curious, you know, i'm sure you had an idea where this was going to go when you started writing. what were your biggest surprises once you delved into -- >> hmm, um, that is a good question. it's all such a blur, i'm trying to remember what i, i think i sort of -- >> or maybe there weren't any. [laughter] >> i mean, everything was very shocking. it was all very shocking. i think -- >> were you manning to write a book, or -- planning to write a book, or were you just doing initial research to write an article and it turned into a book? >> yes. i wrote an article that was specifically about women's heart attacks, and it sort of was about that but touched on some

of these larger issues. and actually, on basis of that was asked to write the book by the an editor here. so it was something i was thinking about but sort of started in earnest pretty quickly. and i think i sort offed had the sort of broad ideas about it even before doing too much of the research. but all of the sort of particulars was totally new to me. like i said, it was not something that was really on my radar even as a feminist writer and, you know, somebody who cared about reproductive health. so a lot of it was very shocking and new and a real sort of wake-up call i think partly because i was, like, i think i thought that it was sort of, to the extent that it had been a problem, it was, like, already solved and had been solved in the '90s and was probably good. so i hope it will be sort of a

wake-up call especially for younger women like me to find that that is, for sure, not the case. >> i think we're -- [inaudible] of the medical system. why this knowledge gap has persisted, i mean, what's the reason why we have this large knowledge gap? >> well, i mean, i think one of my points is that i think the knowledge gap kind of persists because of this trust gap where we have, you know, continued to sort of just, like, erase all of the gaps in knowledge by attributing them instead of -- instead of acknowledging them as gaps in knowledge, sort of blaming them on women's hysteria and, you know, in that way all these knowledge gaps kind of get filled in, and so they're not even actually sort of acknowledged as such. which i think helps explain why

the knowledge gap wasn't even sort of on the radar until the '90s. and i do think sort of helped explain why it has persisted to this day. >> thank you, maya, very much. >> yes. [applause] thank you. [applause] we'll have a signing up front. thank you for coming, everyone. [applause] [inaudible conversations] >> connect with c -- c-span to personal size the information you get. go to c-span.org/connect and sign up for the e-mail. the program guide is a daily e-mail with the most updated prime time schedule and upcoming live coverage. word for word gives you the most interesting daily video highlight, in their own words

with no commentary. the booktv newsletter, sent weekly, is an insider's look at upcoming authors and book festivals. and the american history tv weekly newsletter gives you the upcoming programming exploring our nation's past. visit c-span.org/connect and sign up today. [inaudible conversations] >> hello, everybody. jost tartakovsky, i'm going to introduce my sprouseer in a turn of events. [laughter] jeremy rabkin, george mason university, scalia law school, old friend of mine. and a brilliant scholar who will be joining me to discuss the book. jeremy, back to you.