of pelvic pain. i am pleased to announce that chris was recently pointed to the nih's new interagency pain research coordinating committee. her personal and professional experience will be a great asset to the committee whose mission is to identify gaps in basic and clinical research on the symptoms, causes, and treatment of pain. so chris, congratulations on that achievement, and that important assignment. we look forward to hearing your testimony today. and i'll close again with my gratitude to the chairman for are allowing me to recognize a native rhode islander who we're very proud of. >> thank you, mr. whitehouse and for your opening statements too. ms. veasley, as i said, your entire statement will be made a part of the record. please proceed. >> as director of the nvi, an organization that serves long neglected and stigmatized women with chronic vulva pain, as a sufferer myself, it's truly a privilege that i do not take lightly to be before you today to share what some of americans are experiencing in their daily battle against chronic pain. we're very grateful for the

committee's work, calling on the iom to study what the iom committee concluded as a national crisis that we have a moral imperative to address. the iom report and today's hear hearing has given us renewed hope. hope that our country is listening to us, cares about our plight, and is ready to enact long overdue change to help us regain some quality of life in our ability to contribute to society. i survived a near fatal accident when i was 15 years old and also found a resolution to the debilitating vulvar pain i experienced in my 20s, but i've had residual back and neck pain. and since 2008 i've developed jaw and facial pain as well as migraine headache. my story echoes the experiences of millions. i'm just one of many. the reality is that my choice in being here today, while it is a privilege, means that for the rest of this week and maybe next, that i will be somewhat incapacitated.

and many in our country really don't have this choice anymore. from the moment i open my eyes every morning, the first thing i feel is pain, and it stays with me throughout the day. as the numbers of hours i devote to managing appointments, pain symptoms and medication side effects, which right now averages about 25 hours a week for me, my normal daily activities have become more and more difficult, and the most meaningful pieces of me and my life feel like they slowly fade away. due to an inadequate research efforts, doctors don't have the training or scientific information they need to effectively manage pain. as patients we're left completely disillusioned, forced to navigate the health care system on our own, and implement a trial and error process that can easily take months to years to find a treatment to lessen the pain that we experience. in the last four years alone, i've been to specialists in four different states. i've tried 15 different

treatments, and i still live with moderate to severe daily pain that impacts every part of my life. i've easily spent $10,000 on out-of-pocket expenses alone in the last two years. i'm privileged to have an understanding employer and good health insurance, which many in our country do not have. pain exhausts, depletes, dehumanizes and drains you in every single capacity -- physically, emotionally, spiritually, and financially. it's only by god's grace and with the support of my family that i function as well as i do. and because pain's very purpose is to warn you that something is wrong with your body, it's completely impossible to ignore. your mind is cloudy, your attention is scattered, and it feels like you live with a veil over your face, blurred, unfocused. work goes undone. productivity and efficiency things of the past. things i once enjoyed with my family because of the increased pain and disability that follow. life doesn't stop, it just

simply goes on in our absence. chronic pain is an invisible disability. you wouldn't be able to tell by looking at me today that i have any kind of problem. you look fine on the outside, but many feel like dying on the inside. and when you suffer from pain in an area of your body that is still not candidly discussed by our country, like women with vulvodynia do, the suffering is further compounded with embarrassment, stigma, and isolation. as the iom report highlights, all of what i describe disparately impacts women. further, mounting research shows that once you develop one pain syndrome, you are more likely to develop pain in other areas of your body. this is the reason why the nva joined forces with the endometriosis association, and the tmj association to form the chronic pain research alliance. the first collaborative advocacy effort to advance a smarter and more cost-effective approach the to research on neglected pain conditions that frequently

co-occur and disproportionately impact women. in addition to vulvodynia, there are are tmj, chronic if a technique, fibromyalgia, irritable bowel and headache. our 2010 report drew the same conclusion as the ioms. women have more frequent, more severe and longer lasting pain then than men, but are treated less effectively. they're treated as hysterical and not real, frequently leading to mental health diagnoses. our failure to deal with just these conditions adds a wasteful $80 billion a year to our growing health care bill. despite this impressive toll, the nih's research investment averaged just $1.36 per affected women in 2010. the end result, as we have already heard, is that the afflicted are routinely misdiagnosed, shuffled from office to office, inappropriately treated and left without help. it takes years to obtain an

accurate diagnosis, and when one is gift, treatment is limited forcing the afflicted to experiments multiple treatments with unknown benefit and risk. because of the disparity and the historical neglect of these conditions, it's essential for future pain initiatives to include a long overdue and appropriate inclusion of these conditions. we applaud the health committee, the iom and the nih for your initial steps to address this national crisis, and we strongly support the iom's main recommendation that by the end of 2012, hhs create a comprehensive population level strategy for pain. additionally, all of the recommendations stem back to one thing, and that's research. we need an increased, smarter, and more cost-effective federal research approach by placing greater priority on collaborative research across the conditions, as well as across nih institutes and federal agencies. it's only through research that we will better understand the mechanisms of pain, delineate effective treatments, and that the medical community will have

the scientifically proven information they need to make appropriate diagnostic and treatment recommendations. then and only then will the happenhazard treatment of pain as well as costly and wasteful spending come to an end giving millions of american pain sufferers and their families the one thing we desperately want returned to us, and that's our lives. thank you. >> thank you, ms. veasley. now with dr. john sarno. as i said, dr. sarno is the author of four books, the first being "mind over back pain" in 1984, the second "healing back pain" in 1991. the third is "mind-body prescription" 1998. and the fourth book is "the divided mind ,"which i have right here, in 2006. so dr. sarno, welcome to our

committee. please proceed. >> thank you, senator harkin. thank you for inviting me. pain syndromes can be grouped into two categories. those results from injury. this is the way i see it, from injury, surgery, or associated with severe infection as seen in patients in an acute hospital setting. and those with pain in the back, neck, shoulders, and limbs of a psychophysical origin. the high incidence of the latter group has evolved into a public health problem of great magnitude over the past 40 years. it has been estimated that 80% of the population have a history of one of these painful conditions, which has led to the performance of a great deal of unnecessary surgery and the widespread use of pain medication. it is troubling to realize that

the pattern of pain and physical examination findings often do not correlate with the presumed reason for the pain. for example, pain might be attributed to degenerative arthritic changes at the lower are end of the spine, but the patient might have pain in places that have nothing to do with the bones in that area, or somebody might have a lumbar disc that was herniated to the left and have pain in the right leg. more importantly was the observation that 88% of the people with these pains had histories of such things as tension or migraine headache, heartburn, hiatus hernia, stomach ulcer, colitis, spastic colon, irritable bowel syndrome, hay fever are and asthma. that's quite a listing. and eczema, all of which have been strongly suspected by physicians of being emotionally

based. the pain syndromes here referred to as neural system we believe to be fundamentally emotionally-based. simple awareness of the diagnosis itself we have found can be therapeutic and eliminate the pain. for some patients who accept the concept of what is going on, it is necessary to work with a psychologist to get at the root of the problem. although back pain may disappear spontaneously, in many patients it becomes a life-long problem. there is no logic to the traditional physical treatment. instead, experience has shown, my experience, that the only successful and permanent way to treat the problem is by teaching patients to understand what they have. a physician because he recognizes both the physical and psychological dimensions of the

condition must make the diagnosis. this cannot be made by a psychologist or a psychiatrist. it goes without saying that pain syndrome must always be properly studied to rule out serious conditions such as cancer, tumors, bone disease, and many others. the presence of persistent pain anywhere requires a comprehensive examination and tests. although this disorder to the attention neural syndrome is an emotional phenomenon, it is a physical disorder and must be studied as such. it is not, quote, in the patient's head, unquote. there is a need to raise consciousness both inside and outside the field of medicine to help patient -- change people's perceptions of the cause of common pain syndrome, which represent a major public health

problem. science requires of course that all new ideas be validated by experience and replication. it is essential that these ideas also be subjected to research study in the future. thank you, sir. >> thank you, dr. sarno. now we'll start a series of five-minute rounds of question, or i should say a dialogue with all of you. dr. sarno, something you just said. i'm going to skip around here a little bit. where is it that -- oh, yes. ms. veasley said something that i wanted to -- oh, yes. ms. veasley in talking about a report said that medical professionals are more likely to

dismiss women's pain reports as emotional, psychogenic, or hysterical, quote, and therefore not real, leading to more frequent mental health diagnosis. so i ask you, is their pain real or is it just in her head? >> the pain is always real. but i think the problem is it's not recognized sufficiently that any emotional phenomenon can actually bring on pain. if you would like a physiologic explanation, that's simple, too. the simple reduction of blood flow, which can easily be accomplished by the brain to vital spinal nerves, or any spinal nerve, for that matter, but usually it's more in certain areas, the low back, for example, or the neck or shoulders, is easily done. and i think that it's important to recognize that emotions can stimulate physiologic change.

>> mr. chairman, may i also address that? >> dr. maixner, sure. >> yes. yes. i agree totally with what was just said. i think it's very important that we don't disassociate mind/body when we talk about chronic pain conditions and put chronic pain conditions into strictly an "in their head" psychological component. it's very clear from current research that there is an underlying neurobiology that associated with affect and mood and emotionality. there is a neurochemistry. there is a very well assessed neurobiology, and we know that many of the pain pathways that our patients have activated, activate these same pathways in the brain that are involved in affect and mood and emotional response. so chronic pain is really a

mosaic. it's a mosaic of interactions between the active -- the effective domains of the brain and those areas of the brain involved in processing pain information. they are overlaid. so it is really impossible for us to disassociate mind-body. and in fact when we talk about the emotional, psychological aspects of pain, we're really talking about an underlying neurobiology that leads to the overall gestalt sensation that our patients complain about. >> dr. pizzo? >> thank you. well, i certainly agree and appreciate that there is a broad array of contributing factors as has been stated, i think it is also important for us to be very sensitive to the words we use and the way that they're received. there is today a significant amount of perception felt by those suffering from chronic pain, and in fact those called to serve on behalf of patients

that there is a significant amount of, quote, emotional contribution. and i think while there is no doubt that our emotions contribute to our physiology, i think that we have much work to do to look at our approach to pain, just as we do other neurological and psychiatric illnesses from a physiological perspective as well. this is a very complex, interrelated array of events. and i think one of the things that our committee certainly heard and the data describes, that one of the challenges that happens in medicine is that when we don't know an answer, we often ascribe it to something else. and those assignments are often emotional and almost contributed back to the individual, as if that individual becomes the victim of their own suffering. and i think, therefore, our

view, the view of our committee, this really speaks to why there needs to be a cultural and social transformation in how we look at pain in its vast manifestations that affect individuals in very discrete and very individual ways and to ground it in a better understanding of biology and illness which is truly biopsychosocial, but which has much to be learned about its manifestations and actions. >> i guess -- ms. veasley? yes. >> thank you. i certainly don't deny that my emotional health or anyone else that suffers with pain affects my ability to effectively cope with both the physical suffering and the effects of pain on my life. but while i was hit by a car and nearly died, my pain has never been questioned by any medical provider. but this is not the experience of the average pain patient in our country. and i would just put out there

that there is many examples in medical history, for example, ulcers that were one attributable to stress and inability to emotionally cope that we now know answers to. their cause is a bacteria. and just because we do not understand yet due to the inadequate research effort that we've had, the mechanisms and risks that result in chronic pain does not mean that it's made up in your mind and is not real. thank you. >> if i might respond, i think what dr. sarno was saying, and i have looked at this a lot, it's not in someone's head. it's that certain psychological things that are happening in a person's unconscious can actually create things that cause real physical pain. as he said, the unconscious can sometimes in order to hide up some other thing in your mind

could stem the flow of oxygen to a muscle or to a nerve. that tightens it up, and you feel real pain. i don't think dr. sarno is in any way suggesting that this is anything in your head. it's just that certain emotional or certain unconscious underlyings of people's minds sometimes create the pathways to real physical pain. if i might, am i correct in that? >> yes. as i said, emotional phenomenon can be responsible for physiologic pain. and that's the important thing to bear in mind. >> dr. pizzo, in looking over this relieving pain in all of america, and looking at some of the different approaches that were taken, i don't see that being researched that much. now maybe i just don't understand it all that well. but i don't see that kind of

an approach being researched. that so or not so? >> the approach meaning the emotional basis for pain? or -- >> not emotions not being affected by pain. >> right. right. >> but the emotions -- and emotions is the word i don't like, but the unconscious mind, something going on deep inside is causing certain physiological reactions in your body that are painful. >> i think our view of the research needs around pain are actually quite broad and not defined by any boundary. and my comments earlier are not to pit one approach against the other. not to say that emotions are good or bad or physiologic pain more important than that manifest, but rather in our society today there is a degree of stereotyping that does take place advert tently and inadvertently and that does have consequences. just as a matter of ocean, that

one something isn't physiologically defined, it's often attributed to an emotional reaction. that is really what i was addressing and speaking to. i think it is important, and we heard very eloquently from christine that when one manifests there is often a rallies of our community to that individual because it defines suffering. i know this from my own experience as a pediatric oncologist, someone who has cared for children with cancer and pain for many decades. but when someone comes in with a pain that is not fully define order delineated, as you described extremely eloquently, we make other assignments in terms of cause. and that is what creates the bias of both our providers, doctors, nurses, communities, our insurers, what they'll pay for or not pay for, and these are profoundly

important. we are all too much a society today, a medical world today that is focused on doing something. you know, our insurance companies around pain really are more focused on doing a procedure or giving medication, and less about, for example, cognitive or behavioral therapies or physical therapies, which will work probably as well or better. so i think we need a broad approach based on science. i just want to also underscore your earlier question about research. we need a lot more research. and the research is not simply about what we think we know, but what we don't know. there is an extraordinary need for much more fundamental basic research in what causes pain, how it's manifested and how we can go about treating it. the therapies that we have today, although they work, many people are quite limited, and we need brand-new insights to develop better approaches and innovations that will only come

from very fundamental research as well. >> very well stated. thank you very much, dr. pizzo. senator whitehouse? >> thank you, chairman. and thank you again for holding this hearing. i think it's very important and helpful. i'm going back now a couple of years to when we started working on this in rhode island. but the thing that struck me was the extent to which in various health care settings, the pain that a patient was experiencing was either deprecated or overlooked entirely, and that there was a systematic bias against recording it and reporting it so that even if you were able to convince the doctor on duty at a particular time that you were in great agony, when they went off shift and somebody else came on, and they looked at your paper record, there was nothing to clue them. because at that point pain was

not treated as a vital sign, it was not part of the equation, and there was even some doubt about whether it was possible to do that, given there is some subjectivity involved. but clearly that's something that we were able to get around. so my concern is, how do we make sure that the hard records that exist in nursing homes and hospitals, in various settings of patient care, particularly as we move into electronic health record environment have appropriate fields so that the patient's pain experience is being recorded and can be treated seriously. do you feel that we are there nationally at this point? i see a lot of heads nodding no. do you feel that a federal standard requiring that certain steps be taken with respect to the day to day records, would that be a good idea? and is this something that we should be -- i've been very

active, along with the chairman and others on electronic health records and meaningful use and all that. should we be focusing on this as a topic in that discussion as well? let me start with ms. veasley. she gets the rhode island jump. >> well, it's difficult, because we don't have the answers for patients. but yet we have millions of patients flooding doctor's offices every day needing help. and until we have that basic research, until we teach compassionate care, until providers understand that while we may not know all the mechanisms, just like any other diseases of the central nervous system, there are things that you can do to help patients. and to continue to ignore the pain that someone reports -- i mean as you previously mentioned, end of life care. i recently lost my mother-in-law to pancreatic cancer, which is excruciating. never once is her pain

questioned, but the ability to treat it was hampered by the fact that we don't have the answers yet for providers. so they're left to kind of come to their own conclusions based upon their clinical experience, kind of treat pain as they see it. so we really have to advance research, and quickly. >> well, thank you very much for asking that question, which is enormously important. we are moving as a nation much more toward a refined electronic medical system in the united states. congress and the affordable care act is helping with that, and we appreciate that. but our committee did delineate just as you suspected that even though we have a lot of data, a lot of demographic data that is already in hand, there is much more that we need. and it's one of the recommendations that we made to the secretary of hhs and the related agencies to really facilitate a better collection of information that could help

guide much more deeply the impact of pain on individuals. the metrics that we have are important but relatively limited. and i agree with you that this would be enormously important going forward. >> yes? >> yes. i agree. and i think we have very, very good methodology available to us to rapidly assess both in-patient and out-patient levels of pain. and i think it can be easily implemented into electronic patient record. i think the larger problem is how is that information acted upon by the health care system. so when there is really a substantial pain, do we have well-trained individuals who can respond to that -- to that cry? do we have individuals who can impact what we assess? so the assessment tools are clearly there. but again, as i articulated in

my testimony, we have very poor education with respect to pain and pain management, which greatly impacts the manpower that can respond to the epidemic that i discussed. >> i see that my time is expired. chairman, thank you very much. >> just as a follow-up, senator, dr. sarno, a new patient comes in to you. they've got pain. what do you do? how do you assess that person's pain? what process? >> well, as i said, he's got to be thoroughly worked up, studied, and all of the known pathological processes that could be involved. so that's absolutely essential. and when all of the important things have been ruled out, then i think it's possible to go into some detail with that individual

about his life, what's going on and so on. because i think that -- i'm going to say the same thing i said before. emotional phenomenon can bring about physiologic change. and we've got to keep that in mind. obviously we have to make sure that there is nothing else going on. so exhaustive studies are indicated before we would then begin to think about emotions and pain. >> thank you very much. senator hagan? >> thank you, mr. chairman, and thank you for holding this hearing. i think it's extremely important, because i do know that there is millions of people in our country today that are obviously suffering in chronic pain. and dr. maixner, all of you welcome. and i appreciate the expertise that we have here as well as the personal experts. dr. maixner, you seem very optimistic in your testimony about the future for pain