that reason but the end results is the one you want. >> tonight and examination of florida at election laws and potential impact on voting rights. that is at 8:00 p.m. eastern on c-span. >> a hearing on chronic illnesses and the shortcomings in the health care system for treating them. members of the senate finance committee heard from a heart disease patient and a woman suffering from alzheimer's. from earlier this year, this is just over 1 hour and 50 minutes. >> finance committee will come

to order. today the finance committee focuses its attention on what in my view is the biggest challenge ahead for medicare and the future of america's health care system. that is managing chronic illness. to understand why this is a growing issue, one need only to look at how medicare has changed over the years. when the medicare program began, in those early days i was co-director of the cancer, full head of hair and rugged good looks. medicare was mostly about caring for seniors who needed to go to the hospital. if a senior slipped on the kitchen floor and broke an ankle for example and head to the hospital, they would get treatment and they would head home. in 1970, nearly 70% of medicare

spending was for hospital care. now that number is close to 40%. the change shows how medicare is very different than it was for four decades ago. other than broken ankles or new money medical care is dominated by chronic conditions such as cancer, diabetes and heart disease. more than two thirds of those on medicare i'd dealing with challenging multiple chronic conditions. that care accounts for almost all, 93% of medicare spending and we are going to hear today that it is not just seen years who are affected by chronic illness. half of all american adults have at least one chronic condition. these diseases account for 70% of deaths, limit the activities of tens of millions more americans, and cost the economy billions each year. the problem is only going to be

calm counted as chronic illnesses become more common. in fact the number of health care experts warn that this generation could be the first in modern times with shorter lifespans than their parents and this is not just the health issue. the growing prevalence of chronic disease is a major driver of health care costs that are putting a growing burden on the government, business and family budgets. here is my bottom line. the way health care in america is delivered has got to change. i will repeat that. they have to change. doctors and hospitals often don't coordinate care or even talk to one another. patients receive medication for one disease that conflicts with another. paper medical records for time and energy away from patient care only to be sent on burdensome red tape, there is even data showing caregivers and those with chronic disease state higher rates of stress and

depression and higher mortality rates. virtually all americans get touched by these kinds of issues and certainly those suffering with chronic disease are hurt the most by the flaws in american health care. a look at the problems faced by millions of americans every day as they try to navigate, navigate america's chaotic system of treating chronic illness. the committee will hear how chronic disease is exemplified by a single mom who before her 31st birthday has major heart surgery, can no longer work and even drive a car because of the onslaught of these diseases. people with multiple conditions left on their own to shuttles themselves between a whole array of different providers that

often i located hours away from each other. the life struggling to take care of a husband with alzheimer is, make sure the doctor appointments are kept, medication is taken and the marriage is intact. we all understand this is not something that is going to be solved overnight. this chronic care hearing marks the beginning of what will be a bipartisan effort to address the dominant problems in america's health care system that practically everyone over the last decade has managed to ignore. in the months ahead the committee and find bipartisan solutions to meet the challenges, strengthen the american health care system and very much committed to working with senators on both sides of the aisle and let me recognize senator hatch. >> thank you. i am pleased we are including a health care hearing today. frankly i think this committee should hold more hearings on health care. we all know the implementation

of obamacare has come under intense scrutiny but for good reason in my view. is imperative that the senate start exercising proper levels of oversight to determine whether the law is working as promised. i don't say this out of politics or partisanship but because patients, taxpayers and policymakers deserve honest answers. this committee has an opportunity to delve into the very important topic of chronic illness. this is one area if we choose to work together the committee can find real bipartisan solutions that not only improve care coordination but lower overall health care costs and give complex patients better tools to more effectively manage or navigate the health care system. the medicare payment advisory commission, fee-for-service medicare creates silos incentivizing providers to deliver more care, not necessarily higher quality coordinated care, to successful

medicare advantage programs that give patients the option to receive benefits from private plans that are incentivized to manage care across all settings. traditional medicare fails to encourage providers to labor-intensive and time consuming patient care communication. medicare advantage enrollment increased by 9% to 14.5 million patients. that is 20% of all medicare enrollees. even with these advances, today's health care system remains fragmented and very significant evidence that communication between providers is lacking in the medicare program and the private sector. the medicare payment advisor recondition estimates medicare patients with five or more chronic conditions cn average 13 provisions and fill an average

of 50 prescriptions each year so there is no surprise patients with chronic conditions routinely visit multiple specialists and repeat medical histories and tests, receiving consistent medical instructions, did not get health transitioning from one side of care to another, and use more extensive care settings when it may not be necessary. today one remarkably brief patient as well as a devoted and loving care giver will share their personal stories with us. their testimony will show the current health care system does not serve all patients well but there is hope. they will talk to a medical provider about promising efforts underway to address the unique needs of chronic care patients. i applaud these innovative approaches but we all need to know there are no easy answers. developing and implementing policies to improve disease management, streamline care coordination, improve quality

and reduce medicare costs is a daunting challenge. based on past experiences with medicare program, in particular, much more work to be done. for more than a decade the centers for medicare and medicaid services has tried numerous demonstration programs to find out what does and does not work to improve care coordination for patients with chronic diseases. these demonstration programs have shown mixed results. according to the congressional budget office cms has paid 34 programs in six major demonstrations to provide disease management or care coordination services in traditional medicare. on average the 34 programs had little to no effect on hospital admissions or medicare spending. in 2010 obamacare created accountable care organizations that allows certain providers to

coordinate and integrate medicare services. these provider groups must meet specific quality standards in order to share any savings or share in any savings they achieve for the medicare program. the initiative is relatively new. there is no definitive data to prove they improve quality. if they show any promise to save medicare money or if they are simply failing. the jury is out whether they produce results, obamacare a health and human services broad authority to create and implement new medicare pilot programs. through the center for medicare and medicaid innovation, the obama administration is conducting care coordination programs in various medicare settings. my hope is my research will yield results. as we all know health care costs please enormous strain on the

federal budget by identifying cost-effective data driven away is to improve patient health, pharmaciesmakers can better target scarce federal resources to get more value for their dollars spent. u.s. health care spending grew 3.7% in 2012 reaching $2.8 trillion or $8,915 per person. in fact total health care spending consumes 17.2% of the nation's gross domestic product or gdp. adding insult to injury last year the medicare trustees issued a report showing the hospital insurance trust fund deficit reached $28.3 billion and will be exhausted in 2026. given the current fiscal reality we have to find ways to provide high-quality care, greater value and lower costs, all heading to the deficit so i am glad we us holding this hearing to understand problems but we can't

stop there. i believe this must be a start of a long-term transparent discussion with additional stakeholders' including the administration, cbo and others that will allow us to work together to identify solutions in an open and transparent way. thank you for holding this hearing today and i am looking forward to the panel of witnesses, it will be very interesting. >> thank you, senator hatch and dublin to recognize your years of advocacy to come up with fresh creative approaches for health care challenges and for our witnesses you should know i am essentially flanked by three on this side senators who have real roots in terms of challenging the status quo and looking at fresh approaches and chronic disease and health care services and the same is true on the other side, 6% of the united states senate cares passionately

about these issues and i am pleased that all of you could be here. we are going to hear from stephanie dempsey, a chronic patient, miss dempsey is currently taking on coronary artery disease, lupus, a seizure, disorder, arthritis and very much appreciate your being willing to come, and mary margaret lehmann is the care giver for her husband, can who is facing alzheimer's disease. my mother faced, and dr. bill bornstein is chief medical officer and chief quality officer for every health and finally cheryl demars, president and chief executive officer of the alliance is here. the alliance is a cooperative of employers focus on the delivery of health care benefits. i also want to note that the president and ceo of care first blue cross blue shield is

scheduled to testify, and the skies burst open. senator isakson we have two witnesses from georgia. you have a lot of work on these issues and i appreciate it. and let's hear you introduce miss dempsey and dr. bornstein. >> georgia is fortunate to have two of r 24 witnesses today and i'm pleased to introduce both of them to the committee and the audience. stephanie dempsey lives in blair's ville, ga. the capital of the blue ridge mountains of north georgia and the rural part of the state. she deals with multiple conditions and can talk firsthand about the challenges of having multiple conditions and reaching services in a whirl area of the state. dr. william bornstein is a tremendous individual you and i have met before because he was at our rollout when we brought a

coordinated care bill first to the committee. he is the chief quality medical officer for and mori health care in atlanta which is the home of the emory university hospital. and a major system that provides health care to significant portion of our $10.2 million citizens in georgia. he is an international recognized leader in the use of health information and technology to drive better outcomes and decisions and the committee will really like hearing from him because he is not just talking about doing it, he has done it and implement successful systems throughout the maury health care system and we're glad to have him here today. thank you, mr. chairman. >> thank you for your good work on these issues and i could literally go around the room and point to the efforts of every senator who is here and i appreciate your leadership. let me also say to our witnesses that your statement be included in the record automatically, all that you have put together for

your written statement and summarize your key views and oral presentations, that will be welcome and let's start with you and miss dempsey. i think it is going to be hard to hear you. let the microphone on. if you will speak in to it. you have an important story to tell and i do not want people to miss it. >> there we go. ranking member hatch, members of the committee, thank you for allowing me the opportunity to testify today. my name is stephanie dempsey. i am 44 years old. i live in blair's ville, georgia and i have been battling multiple chronic medical conditions for much of my life. i have always considered myself a middle-class american. i have a well paying job. i owned my own home and was happily married. unfortunately this is not the case today.

the very illnesses that i battle every day have taken that from me. i have lost my independence, my financial security and most importantly my family. i hope my story can help you and those listening to a better understand what people with chronic medical conditions faced day in and day out. i hope my story gives you some sense of the challenges that i and so many others go through daily. i would like to take a few minutes to share my story with you. i was diagnosed with coronary artery disease at the age of 21. my heart disease is hereditary and has impact all of the women in my family. my only sister died at the age of 28 from heart disease. my mother who is 69 underwent quadruple bypass surgery at the age of 48 and my maternal grandmother died at the age of

72 from coronary artery disease. at the age of 30 i underwent quadruple bypass surgery for severely blocked arteries caused by high cholesterol. since then i have had the placement of 27 stands. another bypass surgery in countless other medical procedures. i take 15 different medications in the morning and an additional four in the evening. plus a multitude of supplements recommended by my doctors. at times as you can imagine it is difficult to keep track of all the medicines so i use these different baskets to keep track and every one is labelled by condition, with my coronary -- >> can i ask a question? that basket is what you tapped to navigate through on a daily basis? >> absolutely every day and every night. they are labeled by conditions so that i can say organized

because there are so many. in addition to heart disease i am fighting the effects of lupus, arthritis and a seizure disorder. all of which have become debilitating. i can no longer work although i would desperately like to and i depend on my parents to help care for me. i always believed as i am sure some of you have that you would be taking care of your parents and i always knew that i would be taking care of my parents as they grew older. instead they are taking care of me because i had no other choice. this has been difficult to accept but this is my reality. that link a number of complex elvises has not only taken a toll on me, it has taken a toll on my entire family. as you might imagine my medical expenses are significant and are becoming more significant by the day.

we fell behind on our mortgage and we were forced to sell our home. it was difficult to make ends meet. at the time my first priority was to buy medicines that my son who is now 20 years old needed for his own health condition. is required us to scrape money together to make sure that he has the necessary medicine that he requires. pain for my numerous costly medication was out of the question. therefore i was unable to purchase them. as a result i was hospitalized five times over the course of six months which resulted in five additional stands. as it became more difficult for me to manager my illnesses, the growing burdens became overwhelming for my husband. and after 21 years of marriage, he decided to walk away.

i had no choice but to move from south carolina to georgia to live with my parents. i now live in the rural mountains of georgia and although my primary care physician is nearby i have had to travel over two hours to see my specialists and because of my seizure disorder i depend on my parents to take me to my appointments. in addition to my primary caregiver, i actually messy multiple doctors. i have a cardiologist who helps me manage my heart disease, a neurologist and neurosurgeon who help me manage my seizure disorder and i had a rheumatologist who helps me manage my lupus and arthritis. i interact with other health care professionals such as nurses, physicians assistants, therapists and others. although my doctors are all well

intentioned, they often don't talk with each other or share information about my care. this ultimately leaves me to be my home health care coordinator, to give you an example, my lupus disorder keeps my body and a constant state of information for which one of my specialists prescribe the medication to reduce that symptom. unfortunately, that medication can cause seizures. he did not remember my seizure disorder and the medication caused me to have an increase of seizures. after a visit with my neurologist he took me off the medication knowing the seizures side-effects. getting this resolved today's. countless phone calls and much persistence on my part. not including the increase of seizures. issues like this happen frequently and although i consider myself an educated person, navigating this maze is

very difficult and exhausting but it is my life at stake and i do not have a choice but to be engaged. to give you another example i recently had to change to a new primary care doctor since our former doctor is now only accepting private patients. this has been a challenge as it will take some time to become familiar with my doctor and to become familiar with me. in an ideal world, i have come to realize this is not realistic because i require specialized physicians. for a long time i was privately insured through my employer and later through my husband's insurance policy. however, when my husband was laid off at his health benefits terminated i was left without insurance. fortunately i was able to

qualify for medicare in 2004 because of a federal disability act. although it took two years of fighting to qualify for medicare the program has been extremely helpful but it still leaves me constantly struggling to pay my portion of my medical bills. my last surgery in september of 2012 cost 50 one thousand dollars for an overnight visit. medicare covered all but $1,130 of that feat. i have encountered countless challenges along this journey and i am extremely fortunate to be here today to share my story. i am confident that you will not forget me and countless other people who are dealing with chronic illnesses when you develop policies that will help all of us. our goals are all the same, to live long, healthy and productive lives. i sincerely thank you for giving

me this opportunity to share my story with you. >> miss dempsey, thank you. you have delivered a powerful and eloquent wake-up call hear that speaks to the dimensions of chronic illness and i think the richest country on earth can do better for a patients with these conditions. senators, democrats and republicans are committing to making sure that doesn't happen and i thank you for it. mary margaret lehmann, we welcome you from minneapolis, minnesota. >> thank you. >> we have got -- everybody has got microphones.

speak right into it. >> good morning, ranking member hatch and members of the committee. on behalf of caregivers for individuals living with alzheimer's disease and other dementias, thank you for the opportunity to testify before you today on the topic of chronic care. alzheimer's is a devastating, progressive and ultimately fatal disease. it currently impact more than 5 million americans living with the disease and 15.5 million caregivers. these men and women living with alzheimer's are husbands and wives, mothers and fathers, sisters and brothers, business leaders, medical professionals, republicans, democrats, and my

dear husband of 50 years is one of them. i am honored to be here today to share our story and discuss the issues facing individuals with alzheimer's and their care givers. the more we share our story and talk about alzheimer's the less of a stigma it will become for others facing this disease. karen is fortunate to have a devoted care partner to advocate for him and finally a definitive diagnosis, initially a care plan to insure he lives as well as possible is not available to us. our journey to get here was long and difficult. there are many who live with this disease that never get the care and support they need. can's tended to diagnosis came in october of 2009 but i became aware of changes in his

personality and behavior is as far back as 1995. it was then i began to notice his withdrawing from family, friends and social situations. having difficulty navigating familiar places, as well as challenges in executive function involved in problem solving and reasoning. his judgment was often compromised especially in regard to our finances. ken communicated to me he was having difficulties at work particularly learning new computer programs. we were both patients of well-known, highly respected in turn this. for 30 years. over the years i reported my observations to him. our interest brushed off my concerns that these signs might be something serious by

responding with these things can happen, or it might just be part of his aging. i would tuck away my fear is until the next time and the next time. the wake-up call her came when my love told me we had to file for bankruptcy. his compromised financial judgment had escalated to financial failure. subsequently we lost our home as well. i was left thinking how could this ever have happened to us? i encourage ken to see another doctor to learn the reasons why. after seeing four neurologist and three internists in a year and a half ken was finally diagnosed with alzheimer's disease in january of 2011. our story is not unique.

many families struggle to get a definitive diagnosis of alzheimer's disease just like we did it. following his diagnosis is second in turn is prescribed harris kept and told him to return in a year for a check out. after receiving the diagnosis he went through what he calls those 3 thes, denial, depression, despair. i was devastated and desperate for more answers. we were given a diagnosis but no information on what to expect or how to deal with the symptoms or how to manage his atrial flutter along with the alzheimer's. after three appointments with three different neurologist's we were finally able to find one with experience in treating people with alzheimer's.

today hatch ken is the a patient with dr. michael rosenblum, and along with the alzheimer's association we have developed a plan not only for ken to live well but also for me as his caregiver. maria shriver's documentary the alzheimer's project reports that 74% of caregivers do not survive the persons for whom they are carrying. it is not only the prison with the disease to needs care and support but the care partner as well, especially to reduce stress. from our networking it with others we have learned our story, financial hardship associated with the disease is not unique. in many ways i see my role as ken's care partner as an operations manager. i try to make sure he is as

independent as can be, we make a concerted effort to engage in social activities, to have a healthy diet, for ken to exercise his mind and body and for him to engage in creative expression. .. when it comes to dealing with

alzheimer's. far too many physicians are not only with the warning signs of alzheimer's or how to properly advise patients and their caregivers. additionally, there is a lack of communication and coordination among physicians. content season internist, a cardiologist, and the neurologist to do with various conditions. he carries a list of his 11 medications and supplements to each appointment to ensure that each position is aware of what is other health providers have prescribed for him. sadly, this is more the case than the exception for many individuals with alzheimer's and their caregivers. thank you for the opportunity to testify today. i appreciate the steadfast support of the committee and its focus on chronic care. alzheimer's is a disease that not only impacts the diagnosed

person, but also the lives of their loved ones. i ask congress to address the chronic care issues around alzheimer's with the same bipartisan collaboration demonstrated in the passage of the national alzheimer's project act. this focus on quality dementia care will help individuals living with alzheimer's disease and their caregivers around the country. and epidemic is well upon us, and to many families are in a situation like ours, facing a fatal brain disease that currently has no way to prevent, cure, or even slow its progression. and we are left without a support system to guide us. as a nation we cannot afford to wait until alzheimer's bankruptcy the nation, just as it already has for someone

hard-working families in oregon, utah, and across this country. we must make the smart investment now to realize a better, healthier future for our families and our nation. right now all we have is hope. thank you. >> thank you, ms. lehmann. in addition to hope, we have you, and i sort of see a size seven halo over by the witness table. listening to your story, it also very much it simplifies what my mother dealt with. my mother had alzheimer's and dementia. got a masters degree from yale in the days when no woman got a masters degree, and was suffering much the same evolution of events you did. and i very much appreciate your coming. we have a number of champions year on this committee on both

sides of the aisle, democrats and republicans, who want to follow up on your all summer reforms, including me. so we thank you. thank you very much. dr. bornstein, welcome. >> thank you. thank you, chairman wyden, ranking member hatch, and members of the senate finance committee for inviting me to discuss emory healthcare's efforts related to caring for our chronic care patients. i also wish to extend a special thanks to senator johnny isaks isakson, a good friend and strong supporter of our work. as the chief medical officer of emory healthcare in atlanta, is it kashmir and as a practicinpracticin g endocrinologist, i know firsthand the challenges faced by her patients with multi-chronic medical conditions of which you've heard eloquent testimony. many of my patients have diabetes and most patients with diabetes have other medical problems. hypertension, coronary disease,

kidney disease, and many others. many of these patients see multiple specialists. they may be seeing me for diabetes, a cardiologist for care of the coronary disease, an apologist for care of the kidney disease. everything that each of us does as you heard already this morning affects the whole patient. many problems like elevated blood pressure and elevated cholesterol overlap each of our specialties. each of us strive to take a patient centered approach to treating a set of problems. at the challenge is how do we make sure that all the care is coordinated so that we can take a patient centered approach to the care of the whole patient? at emory we have a highly sophisticated, single electronic medical record system that spans our hospitals and outpatient clinics so that all providers can see the entire medical record. however, coordination of care requires more than technology and good intentions. it requires relocation of time,

from face-to-face interactions come to time devoted to coordination of efforts among providers, and a non-face-to-face interactions, providing continuous care of patients. so in addition we are hiring and training nurse care coordinato coordinators. we embedded these nurses in the primary care practices, and feed them data identifying the highest risk patients, and the care coordinator stay in touch with those patients helping to make sure that they are doing well, and when they're not, providing them the care they need. however, as you know, care coordination and technology infrastructure are expensive. when these investments are successful they help keep our patients out of emergency rooms and hospitals, thus reducing the revenue of our health care system. under the for service, i'm in the awkward position of asking our health system to fund efforts that will reduce our revenue within the context of

declining reimbursements like the 2% sequester cut in the ever looming specter of sgr. to try and deal with these challenges proactively formed a clinically integrated network, the emory healthcare network, for each income which is our accountable care organization that provides extensive infrastructure and support for physicians in a collaborative and quality-based environment that drives us to performance, improves care coordination, enhances outcomes and controls costs for our patients and our community. ehn is contracting for ways to liberate us from the constraints of fee-for-service and moves us towards better a lime enemies among patient providers and payers. we not be shared savings contract with blue cross blue shield and in our negotiating similar contracts with other commercial payers. under shared savings if we're able to lower the total cost of care and improve quality through better coordination of care, we

share in the savings. shared savings can help offset what would otherwise be negative financial consequences of the investments needed to improve patient care. the costs in the range of six to $10 million annually to run ehn and that this level include the costs incurred by private practices to connect to our emory healthcare information exchange which we require for their participation in the ehn. as a leading academic medical center we care for some of the most complex cases in the country. emery has been remarkably successful and working within the current constraints. amory is filled health system in america got more than one hospital ranked among the top 10 academic hospitals. indeed, both of our eligible hospitals, emory university hospital and midtown have been in the top 10 for the past few years and our right to number two and number three respectively. we are proud of this achievement, most importantly

because of what it means for our patients. however, we are by no means satisfied. we need to apply and extend these achievements across the continuum to achieve a triple and a better health, better health care, and lower costs for the population we serve. we can only achieve this through better coordination of care. our physicians and staff desperately want to take better care of these patients. that's why we practice medicine. current structures great frustration among our providers as well as our patients. our primary care teams feel these frustrations most acutely and these stresses continued to the relative lack of interest in primary care and other non-procedural specialties. frankly, it is easier and more profitable to the procedures than to try and coordinate care in our current system. our nation's capacity to grow its wor workforce is predicatedn dr. ping up to do what they into medicine to do, care for all their patients needs.

american health care should be in a golden age. we have so much to offer patients and so much more than just a few years ago. to deliver on this promise we need a new framework that removes barriers and rewards high quality coordinated care. thank you for shining a spotlight on a challenging issue of chronic care. i look for to answer any questions you may have. >> doctor, thanks for the help that you've given the committee and also for highlighting how slow the incentives are in today's system. we look forward to questions. ms. demars. >> good morning, chairman wyden, ranking member hatch, and members of the committee. i'm here today to represent the alliance which is an not-for-profit cooperative owned over 200 employers in wisconsin, illinois and iowa who provide health benefits for over 90,000 employees and their family

members. employers who are members of the alliance are working to address chronic diseases by creating healthy workplaces, by reducing the financial burden to patients through by-based benefit design, and by raising the bar on our expectation for health care delivery. our efforts and wellness and to benefit design are important, but alone are insufficient to address the cost problems we face in health care. the efforts that we've made so far are resulting come in results that are too modest and to slow. so simultaneously we need to use our old as purchasers of health care to make faster progress, and that's the idea behind the new initiative that we're developing called quality path. through quality path we will move market shares to high-value physicians and hospitals, and in doing so overcome some of the

barriers to faster progress, particularly information to help us understand the performance of individual physicians, and incentives that are misaligned or nonexistent for patients and providers. we are starting with high-cost schedulable procedures in cardiology and orthopedics because those are the areas where our members spend the most money. here's how the program will work. first come a quality path will evaluate individual doctor and hospital pairings. consumers, patients want and deserve information to help them understand their performance of their doctors. yet, position specific hospitals -- public reporting remains an elusive goal him and the promise of the physician going to the website is yet to be realized. we will address this unmet consumer needs by requiring physicians to disclose their performance on quality measures

as part of a quality path application process. second, quality path will set a high bar. we intend to make a real and lasting difference in health care, and so have carefully chosen the criteria that we will use to get quality path providers. we relied on input from the clinicians that deliver the care and their specialty societies, and have aligned with leading edge public and private sector initiatives. the most notable is a cmmi funded smart care project which was developed by the leadership of the wisconsin chapter of the american college of cardiology, and the wisconsin medical society. doctors and hospitals that received a quality path designation will score high on quality measures, will avoid exposing patients to arm with the overuse of imaging tests,

will consult with patients and respect their preferences when multiple treatment options are available. and we'll talk with patients about future care needs and document their wishes for end-of-life care as appropriate. and, finally, quality path will lower costs for employers and patients. we will be negotiating more aggressive, lower bundled prices with worn these. this only be available to employers, our members who agreed to implement substantial financial incentives for their employees to just quality path providers. that white quality path will simultaneously reward patients that seek high-value care, and the providers that deliver it. quality path relies on access to data and the flexibility for purchasers to innovate. and that's where the federal government can help. employer organizations like

ours, and the all-payer claims database as we rely on, need access to medicaid data to enhance physician level measurement. we also need the flexibility to design plants that report high-value care. and we need partners. market-based efforts like quality path will only succeed if there is a significant business case for providers. state and federal government, acting in the role as employers and purchasers, can join with private sector efforts to amplify our signal strength. data-driven innovation holds great promise for improving the value of care, and thank you for letting me share employers efforts to help make that happen. >> it's very helpful to have the employer input, ms. demars. senator hatch has tried to be in two places at once this morning, and she is very much needed in the judiciary, so senator hatch, i'm pleased that you start.

>> i'm i'm grateful to all the. your testimony really hit home, and we want to do everything we can do it. and we will see we can do. i'm sorry that i'm split between -- between two committees, but very interested in everything you said that everything you suggested. so with that i hope you'll forgive me for having this burden of two committees going at the same time. thank you. >> senator hatch, thank you. you can't quite to be cloned. it's great to have your leadership. let me start with a question that i've been struck by having kind of watched the oddity of those -- odyssey of those with chronic disease, over the years. what you bump up against first is the staggering burden, there truly staggering burden on patients and family. you know, they have the disease,

and then have to try to figure out how to make their way through, as you, ms. dempsey, said so eloquently, and you, ms. lehmann, tried to make your way through this sort of maze of treatments and vacations and appointments. it just strikes me, it's like a system push this gigantic boulder on your back, this overwhelming burden on your back when you are trying to deal with chronic disease. and patients have several physicians. they've got this, i always called it a mountain of prescriptions, i guess i've gott to rename now that i see trey after trey over there, ms. dempsey, consuming the witness table. i guess they just don't guess they just lived a full book the other day to the staff and people now have medical records the size of phone books. so the first question i'd like to see if we can get our arms

around as we try to move forward, and as i indicated, the senators here who have been really passionately interested in these issues, senator stabenow, for example, in senator toomey on this alzheimer's issue, send it to casey looking at chronic disease for young people and others, senator isakson, a lot of senators who care about this issue. and what i'm struck by is at the outset, how valuable to me from the kind of the seat of my pants it would be to have one individual, one single individual, whether it is a nurse, a physician, you know, another individual from the health care system who basically would be to go to person for coordinating the appointments and keeping track of the multiple doctors and making sure

that one individual doctor communicates with another. that was the whole point of the electronic medical record. you didn't want doctor three have to repeat all the stuff that doctor 2 and doctor 1 did but we are still trying to make sure that interconnection is there. so let's start with you, ms. dempsey, and you, ms. lehmann, to get on the record how valuable it would be to you to to have one single individual. we know the debate about who it ought to be, but to have one single individual be that go to person to coordinate the array of visits and services and the like. let's start with you, ms. dempsey. >> it would be life-changing. it would be a wonderful to be able to, i just free up some of my time and maybe even relaxed enough to know that i don't have

to follow step behind everyone foot for foot to make sure that things are done and make sure that my care is at the top of the list. if i had that one person that is the go to person that would make sure that everything was done correctly, and everything was coordinated between everyone else, it's just in valuable. >> and you, ms. lehmann. >> not only would it be life-changing, it would be like giving. because most of my time is spent feeling overwhelmed. where do i call for this? what do i call for that? we are now facing looking at long-term care. how are we going to do that? this is a very huge issue. i want to keep ken at home with me. i want to be his caregiver, but

i'm going to need help. he is considerably waste more than i, and i'm going -- he considerably weighs more than i and i find is very, very overwhelming. if i had one person to whom i could call and say, how can we do this? how can you help me? i would so appreciate that. >> well, thank you both. i will have plenty of the questions after i make sure my colleagues get a turn, but that, that literally send those great panther days struck me as the requisite to turn this around. you all have called it life-changing, life-giving. i just would like to take some of that boulder off your shoulder. you know, when you're dealing with the conditions that you describe this one, and you've got figure out how to navigate this byzantine -- i saw with my

mother and i said to myself at one point, so comparing him, i mean a state senator, that's a pretty important position, everybody in the health care system knew about it, and my mother got a masters degree in the. >> , and we were in her hometown where i played basketball. and i said to myself, if it is this hard for somebody like me and the family, what's it like for everybody else who's not starting with that? that's would got to turn around. so let me about my friend to have added to next is under stabenow, you should know she has done extraordinary work on alzheimer's. i don't think a month goes by without senator stabenow talking getting about what we have to be doing on this committee about alzheimer's. senator stabenow. >> thank you, mr. chairman am a fovoyeur incredible leadership. and thanks to each one of you for the role that you played and

the important work you are doing. ms. lehmann, thank you, and ms. dempsey, and before i ask specific questions regarding alzheimer's, i do want to just start, mr. chairman, by saying for the record that while the are a lot of things folks want to talk negatively about in the affordable care act, and because we have the affordable care act are no more existing conditions. so at least are not having to worry about finding insurance with all the challenges that you have. there are no annual or lifetime limits on the number of treatments that you can receive. so at least you are not also having to battle all of that. and we are in a situation where there's more affordable option for people. and while we are not doing everything we can on cost savings, lease where having the conversation on bundled payment and on coordination and accountable care groups, and

recently we've seen real savings to date on this. so there's more to do faster, but at least we're talking about quality of care and what needs to be done. and in my judgment, we've got to talk about case management, mr. chairman, in a much more real way. first, let me just say for the record, number one cause of death of women in this country is heart disease. people don't realize that. one out of three, one out of three deaths of women, mr. chairman, are because of heart disease. and so we need to remind ourselves of that. doctors don't understand unfortunately women have the differences and. they are diagnostically, oftentimes it is said it is stress when it is actually something happening in terms of heart disease. we have a very important report coming out from the fda, and

animate offered in the fda safety and innovation act that we passed that's going to require an actual plan for more participation of women and drug clinical trials because women are different than men and a different reaction. and so we always want to make sure what you're getting around in there is actually the best for you to have as a woman. so it's very important fda action plan, mr. chairman, we are waiting on in august. ms. lehmann, let me just say that your story just emphasizes and read energizes me to pass something that senator collins and i've introduced called the hope for all summers act. we've got to get this done. as you know, this would require comprehensive clinical diagnosis evaluation for alzheimer's disease, caregiving plans for newly diagnosed individuals and caregivers about all the

options, all the things you're talking about to make that the devil as well as documentation on the plane going into the medical record and that on top of critical research that we have to continue to do because there is something we should be doubling down on the health research. i'm wondering if you could just speak to, if 15 years earlier, you have been able to have the tools to diagnose your husbands alzheimer's symptoms and so on, what difference would that have made, to both of you come into lives if you'd really known earlier and been able to get the care you could've had that time? >> it would have been, it would have been a tremendous, just absolutely tremendous. i, by the grace of god, i am still standing. that's how i feel. this last 15 years has been

very, very difficult. it is the love that we have for each other that is truly sustained us. it's our faith and our family. without those elements i can imagine having been through this -- i can't imagine having gone through this. just go to the nude of doctors and their apologists whom we expected would know or be knowledgeable about alzheimer's. but were not. i was hoping at the time when i was looking for the second a neurologist, if it was just a guide from in the yellow pages that would say specializes in alzheimer's, and the alzheimer's association was able to get me a list of doctors who did specialize, but it was later in the process. >> and it shouldn't be that hard. it should not have been that

hard. >> and if only a doctor, one of the very first doctors we've seen had referred us to the all summers association, it was actually a friend in california who called and said, how are you doing? and when she heard how i was not doing, she said, called the all summers association. my dad had alzheimer's and their such a help to me. may be there will be a help to you. so here's another instance of the caregiver helpline which i now refer to as my caregiver lifeline. that was the beginning of the change. >> that's a wonderful crew. mr. chairman, i know you know this, but just for the record, one out of five medicare dollars goes to the treatment of all summers. one out of five medicare dollars. this is a huge issue, predominantly of the quality of life and life, but it's also a huge issue or us in tackling

costs. so i very much appreciate your doing this, and also ms. dempsey, thank you for being here. i've listened to you. it's overwhelming just listening to you, and it's just unbelievable what you're challenge was. so thank you very much for taking the extra effort to come and share your story. >> thank you for your dedication. >> thank you, senator stabenow. and in addition, ms. lehmann to you should know that senator toomey has spoken to us about alzheimer's as has senator warner, and they will be very strong support in this committee on both sides of the aisle for reforms on alzheimer's. before i recognized senator isakson, your send it is, ms. lehmann, senator klobuchar and center franken would like us to go for the record. i ask unanimous consent those statements be submitted for the record the hearing no objections to order. we very much appreciate the good work that senator isakson has

done in this area. is been my partner now for many, many months. and when you work with senator isakson on health reform come you're running with the right crowd. so i'm very appreciative. senator isakson come your question. >> thank you, mr. chairman. dr. bornstein, thank you for test what and thank you for coming to our rollout. i guess it's been a year ago sang joo kim one coordinated care. your testimony was her to vote on point or i want to repeat a part of it. you and dedicate what did you call, care coordinators or nurses, cracked? you are not reimbursed through any system, are you? >> correct. >> you coordinate the care of your patience, great? >> just. >> which lessens the number of visits on a fee-for-service basis for which your reimbursed? >> yes or. >> in other words, it cost more to do less and less to do more. >> yes, sir. >> if we are doing more we be a much better shape financially as a country and we lessen the burden of health care and approve this quality, great? >> exactly spent if ms. dempsey

were your patient and you have an embedded care coordinator in the practice, with -- would be improper prescription drug for rheumatology that affected seizures have been caught by the care coordinator or by health information technology? >> well, i think the care chordata can certainly play a role in that. our information system would help alert us to that. you know, i also believe the important role of primary care in the earlier discussion, the fact that we need somebody who is captain the ship and look at all those pieces by think there's another element. a dependency on kind of third parties coordinating care, we need to have that built-in but we also need to have all of the individual specialists thinking about care coordination through the process of care.

>> so speak to give an example is summer to what ms. dempsey talk about. i used as a litmus test for how our system is performing. so i take every patient with diabetes who might be seeing another specialist, and that specialist considered starting the patient on an anti-inflammatory drug that raises the blood sugar, the best thing is for that individual to coordinate with me and plant around the effects of that medication on the blood sugars. similar to the medication that might increase the risk of seizures. the question is how often does that happen? and the answer in my experience is almost never. and occasionally the specialist will ask patients to let me know about this, putting the burden on the patient to coordinate care. and so i think we know that most of these individuals are hard-working, well intended, and care about the entire patient. but the burden of our fee-for-service structure is such that there is relentless

pressure to see patients face-to-face, and no real provision for the type of activities they need to go on when patients are not there, the conversations that specialist need to have together that complements have been care coordinator's and primary care providers as well. >> your testimony of firms with the chairman and i've been talking about, and that is that you can improve quality of the with the cost of improving the cost at the same time by coordinating care for people with multiple chronic illnesses. on alzheimer's, my mother passed away from alzheimer's and i wish her caregiver for the first few years after my father's death. one of the things i remember, the aggravated alzheimer's was when we would have to take her to a physician or take her to a medical appointment and take her out of her surroundings where she was staying to do you experience that? >> ken is still early stage, but i definitely notice that is something that is very common

with persons of alzheimer's. it can be very difficult. and they can result in behaviors that we don't see on a day-to-day basis necessarily. >> a territory you can help avoid the number of visits you have to make, which activates all summers but i remember from my mother situation did she go from a very docile into the to a very agitated individual because she was outside the surroundings is used of me with when she was in the home. >> exactly. >> mr. chairman, the tasman by both ms. lehmann and by dr. bornstein, certifies what you said all along that is if we can do a better job of incentivizing coronation, the best is better care but it also is less costly i think the testimony we've heard verifies both of those. i want to thank our witnesses for joining us today. i've got a house about two counties over from you and its gods country and we're glad to

have you there. spent my mother calls it can't country, too. thank you. >> thank you, mr. chairman. >> i would just tell i guess that you often see senators kind of engage in this bouquet talking contest where they say nice things about each other, but on the bill, the bipartisan bill that is here in the senate and in the house, that medicare lower cost cost, that was senator isakson who from the get-go really saw that as a friend around which to build. so we very much thank senator isakson for his leadership. senator bennet is next, and i want to you, senator bennet has been run in and out of this room trying to figure out how to juggle meetings and still be here to tackle these issues because he cares very much about it. senator bennet. >> thank you, mr. chairman. a nice thing i like is about like always, thank you to senator isakson for not using your time. that never happened around this place. they should build a statue to you. mr. chairman, thanks, and thank

you all for your attachment. is consistent with what i've heard from patients and others in colorado. i'm delighted this important topic is here before. dr. bornstein, i have a couple questions for you. senator grassley and i as was others on this committee have been focusing result of how to improve better care coordination for children with chronic conditions who are often overlooked and suffer tremendous as a result of that. i'm sure you encounter this at your hospital come and children with medical complex condition. i wanted to talk about the challenges that they face and improvements that you put in place to do with our kids. >> well, care of children at emory, i know the same principles apply, whether you're a kid or an adult, when you have multiple medical conditions, on the numerous medications, seeing

several specials, coordination will occur spontaneously. it requires extra energy and effort. it requires in particular the allocation of time to do that. i think as we discussed earlier, there's been lots of hope place on information technology and i think given the complexity of the care we now render, information technology is absolutely crucial. but it's necessary but not sufficient. by itself it won't solve these problems. >> even beyond the institution of the hospital, if we could figure out to great a set of conditions where the children's hospital across this country were able to work in closer -- >> i think that's true for untold care as well. while we have our own integrated medical record, and that the publishers quite a bit, as soon as they see a provider outside of our network, most of the information is invisible to us. >> you had mentioned in the

discussion with senator isakson the problematic result that we face because we are enslaved to the fee for service system that i wanted to talk but other ways in which the federal government and private insurers create incentives that are not only not helpful to you by drag you in a completely different direction from where you would like to go. and i realize that's a big question but since you're here and we've got the folks that will be making some of these decisions, think big. don't -- don't think smoker if you were in the senate what other handful of things you do to make your life less of a misery? >> let me try to address that from to altitudes. it is a big question. >> i'm not implying your life is in misery, but to the extent that we cause these problems. >> no-no. let me say at the outset i think

the fact that we're having these conversations is really important. and i have great hope for the future and to what is possible. as i said in my testimony, this should be a wonderful time for patients and for caregivers, given all of the wonderful things we have to offer. and if we can just break through the berries and improve the structures i think we can deliver on that promise. at a grander level one big concern i have relates to a quality measures are used. so with every quality measures and with every implementation, there's always unintended consequences. that's just the nature of the universe, more or less, but i think what's particularly important when we think about these quality measures is one of the unintended consequences and how can we continually improve them? so, for example, when ms. demars was i got physician profiling, which i support, we

need to make sure that severity adjustment is built into that. so if i'm an endocrinologist at emory taking care of the most complex patient with diabetes whose measures of glucose control may not be as good as some patients with less complex diabetes, how do we account for that? because if we don't, what we will do is undermine the important efforts that are devoted to those patient groups in need of the most complex types of care. at the other end of the spectrum if you would ask me some thoughts for how do we change all this, i didn't i think payment structure is a big issue. we desperately need a system in which we have time to put energy and effort into coordination of care and use all of these tools that we are now developing. so for patients with diabetes

more and more of the care can be delivered when a patient is not there. it needs to be continuous care. so their blood sugars can be transmitted to me if they choose to have that happen and i can have a more continuous relationship. within our current structure if i spend my time doing that i'm going to go out of business, and, obviously, no margin, no mission. i also think is what you think about how we develop quality measures that reflect coordination of care. and this make them in trouble with some of my colleagues, but it's a concept i've kind of thought about that in a way is joint and several liability. invitation is group group of medical problems, my thought is each of the providers taking care of the patient ought to be responsible for all of the measures of the quality that patient needs. so if they are seeing me for diabetes, and orthopedist for back pain, i ought to have some

accountability for the back pain, and the orthopedist ought to have some accountability for the diabetes control. because after all, what each of us does have some impact on the whole patient. >> thank you, senator bennett, thank you for all your efforts on this over the years, look forward to working with you. senator warner is another all summers and chronic disease with a long-standing interest. let us recognize him. >> thank you, mr. chairman. thank you for holding this hearing and i know it's just the beginning of his recent hearings on the subject. i know you raise the issue after hearing ms. lehmann talk. probably all of us have got a personal story. my mom had alzheimer's or 11 years. night at which she didn't speak. my father was the primary caregiver all in by such a. a journey that was much harder than anything else i've ever done, and having those respect for both of them for what they did. and that has driven me, my tenure as governor and a senator, given chavez to johnny

isakson. with the johnny isakson taking another piece of this journey. i'm a senator bennet as talked about children. senator isakson have talked about chronic diseases. senator isakson and i've talked about and got legislation focus on advanced illness and that component of life's journey. and were i want to start i think with ms. lehmann, dr. bornstein, and anyone else, i think dr. bornstein, just raised some interesting things about joint and several liability. interesting concept. interesting idea him. i'm sure that some of your colleagues cringe when you just said that, but prior to that kind of tale and responsibility one of the things at the front end is how you set up a care plan. and i'd like you need you to address the solution of first of all how we can do a better job of setting up these care plans that make sure that all of, not only medical providers, but other stakeholders and then in

the individuals like him particularly as a look at advanced illnesses are engaged, whether that is social workers, hospice, others. number one. and number two if you could comment on what we on the legislative side, where senator bennet was speaking, what we in congress can do to advance that goal of having these care plans carried weight in some of the things senator isakson looked at, or just having if you have that kind of advanced tool, it would be recognized across state lines. heard from our first witness, moved from south going to georgia, a directive she had would not be honored across many of those lines. ms. lehmann comedy want to start, and other members on the panel for care plans? and then from the congress standpoint. >> i have to say that this is a new concept for me.

i have been come as i mentioned, the operations manager. i have been the care plan or. and i haven't gone as far as made a wish list for what could be, because and even with the day-to-day -- >> you are still living at. >> i am, indeed, living it. but i think it would be so very helpful just if, to even have someone to coordinate with, just even i would mind making the calls if someone would tell me where shall i call, who shall i call, whom shall i call. it's a married -- it's a myriad of lots and lots of resources, and i have access to them. i have loads of booklets from the senior linkage line in minnesota. i have so much wonderful

information, and i look at it and i am overwhelmed. >> one thing i might mention that we started a decade ago before the then governor, based upon my own family experts is we set some the cold senior navigator.com that provides those kind of questions but also provided the kind of resources drill down to actually by zip code level but because so many caregivers or others just don't know where to turn. but one of the tools to be put in the toolkit. dr. bornstein, do want to address this? >> yes, sir. well, i think you put your finger on the very important opportunities. so from the standpoint of care plans i think what we are making good progress on these care plans for diseases. for patients with multiple diseases will have a diabetes care plan, and a coronary artery disease care plan, so forth. what we need is care plans for all of those diseases,

integrated care plan design for the individual patient that takes into account all other illnesses. and again i think that needs -- that won't happen without a payment structure that does not solely reward this is. it requires one that will reward of those kind of efforts for producing better care. >> you don't think it's a rational system where we come with a medical professional for repeated tests, but refuse to come was at the same medical profession to sit down and actually talk through with the family, this stage of life? >> exactly. in fact, we have a very successful out of care program at emory, but what they tell us is the conversations they need to have with patients and families take a long time. and even under the current palliative reimbursement code, they're not able to sustain themselves. other opportunities, i personally think that there's a

great need for more of these conversations to occur outside of health care facilities. you are probably fun with alan goodman's conversation project. these are hard conversations, even for sophisticated families will often do everything they can to avoid the conversation. but there are tools out there and we could do a better job of promulgating those tools. again, this goes way beyond health care systems. this kind of public health opportunity. also -- >> one thing i would mention, i know my time has expired, but oftentimes the doctor may actually be as uncomfortable having the conversation as the family. >> absolutely, absolutely. at a different specialist may be on different pages. they need to have those conversations together as well. >> thank you, mr. chairman. >> thank you, senator warner. and our guests should note senator warner in addition to always raising important issues, what he has described dovetails

very well a very large demonstration project that is going to be a gaining shortly, run through cms called medicare care choices. and for the first time this would allow those to have an option, which in the past has not been permitted. and all the applications are in in making the decisions of this is about to be rolled out shortly and i think dovetails well with the important work center one is talking about. senator casey. >> mr. chairman, thank you very much for the hearing, and what you think as well for sharing your own personal story about your mom. i was left there for a couple of moments ago, and had a meeting about a whole set of other topics, foreign policy, and the person in a meeting when i told him go back to them he said i do 94 year-old mother and she is the equivalent of a concert pianist.

she's 94 and she is alzheimer's but she can still play very well, and yet other parts of her life are more complicated. so it affects so many families, senator warner and others have spoken to this over many years. i will direct my questions not to ms. dempsey and ms. lehmann, and i don't do that for any other reason in that i have limited time. but i'm especially grateful you're here to provide your own personal testimony. it's not easy to talk about your own lives in a public setting like this, especially something as challenging as this is a we're grateful for your presence and your testimony and the information we derived from the. i'll start with ms. demars. i wanted to talk about the question of ms, in particular. we know, and this is, this is known to medical professionals but we know that ms is a series

of debilitating disease in which a patient's immune system eats away at the protective covering on the nerves. we know that the treatment for ms is highly individualized, and that's what i ask the question because at the same time it's complicated and difficult to deal with, we know with proper management can yield great results reducing symptoms, slowing disease progression and improving quality of life. i guess the basic question i have for you is when you look at what plans employers are doing, how do they select plants that ensure that patients with ms and other chronic conditions have access to the full range of available therapy? could you speak to that? >> sure. thank you, senator casey. >> and at a reasonable cost. >> that's a tricky par. our members are -- we understand

that the health of our workforce is directly related to our business results, and so a shared interest in ensuring our employees and family members get the right care. increasingly employers are looking to the science, looking to research to help them understand what they should be covering and at what level to ensure optimal health. value-based benefit design is a nomenclature that's being used to refer to the practice of providing clinically sensitive, clinically nuanced coverage for employees. so the science related to ms would be something that would factor into a self-funded employers designed other benefit plans to ensure adequate coverage for that condition. >> isn't anything you would hope we would do to either further incentivize or facilitate this kind of approach to ms?

do you think we are on the right track? >> maybe i could just speak more broadly than specific to ms. i think the research has great promise to help us understand the relative value of tests and treatment that we can begin to factor into how we provide coverage. >> thank you very much. i want to turn to dr. bornstein, and the question of socioeconomic status of beneficiaries which like everything has an acronym, as c. s. there's been a lot of recent research on the economic, social economic status of an individual can affect both outcomes and health. you know from the work of the committee and from your involvement with these issues

that delivery system reform is a huge priority for us and a major topic. sometimes what is less often discussed is what i'm sure you understand seen is kind of a growing body of research and evidence that racial and ethnic minorities and people with lower average incomes receive offer lower quality of care than folks in other income or racial categories. can you speak to that in the context of, i guess of the basic question is, do you think there's a utility and the need to include these kinds of what might be called socioeconomic status factors when determining health care policy? i know it's kind of a broader question. >> yes, sir. i think absolutely it's a critical element of improving health is addressing the socioeconomic disparities. right now there's a debate going on as we speak around risk

adjustment for hospital readmission rates related socioeconomic status. i think that kind of illustrates the case very well. from a hospital standpoint, the hospitals that serve the more disadvantaged population typically have higher readmission rates. and as you know much of what -- >> and they can be penalized because their rates go up even if it more difficult challenge? >> exactly. so much of what determines the likelihood of readmission occurs after the patient leaves the hospital. and so their home situation and access to care and there's support structures have a significant impact on that. to penalize those hospitals for things are very much out of their control would have unintended consequences of a further deterioration of their economic liability in terms of providing that care. by the same token, that means

not to fall off the country to radar screen because this is a problem. and the fact that the disadvantage have higher readmission rates, worse outcomes does need to be addressed. but the question is, does that need to be addressed by the individual hospital at which they're just been discharged him, or some other element of society? so i think it's a critical consideration and when you can never forget about it. >> thank you very much. >> thank you, senator casey. i know you've talked to me about these chronic care issues, particularly in the context of kids a number of times over the years and the very much appreciate your advocacy. we are joined by the pennsylvania others center, senator toomey. >> thank you, mr. chairman. i want to thank all the witnesses for being here. i direct my question to ms. lehmann. you know, your story is painfully familiar to so many americans who are suffering through some variation on that.

i wonder if you could just give us some more thoughts from your perspective on how health care providers might approach care differently, the importance of coordinated care, the importance of whether that is a teen or whether an individual, whether you think that that's, which physician. i mean, your husband sees multiple physicians, who should have that responsibility any thoughts about how the focus of the care could be different and could be helpful to the patient and the caregiver? >> i think among canines doctors, our knowledge -- ken's doctor, our neurologist is the most important person at all times as our primary concern. it's fortunate his atrial flutter is somewhat under control, medicated, so he's able to thrive with it.

but we come i still think in terms of his come when someone asks hoosier primary doctor, i always say the neurologist. he goes in order to live well with alzheimer's, it begins with him. it begins with how he helps to coordinate the health plan, which he has to degrade. i think it is, it comes in different portions or different compartments, but what he is looking at in particular is making ken's life as rich and as powerful as it can be on a day-to-day basis. ..

>> because they insist that we have free time. we all say, but we want to come. we want to be together. we want to have this time together. but we come together, we are a couple, we are supporting each other in this. he goes to his program where he learns about good diet, where they exercise and where they do a lot of creative expression which is turning out to be a very, very important part of living well with alzheimer's.

so dr. rosen blum has been very much a part of that. in fact, he comes to the living well program. he's attar of it as far as speaking to the caregivers, speaking to the persons with the disease. also the neuropsychologist from the center comes to answer questions about the disease for the caregivers as well as for the persons with the disease. so that's an aspect which is very, very important dealing with our daily living. >> uh-huh. >> for me, dealing with finances is another issue, and that's where -- and the system for further help. down the line. that's where another triangle, another piece of the pie that i need assistance in. but i'm so appreciative of the care plan that we have with our neurologist. >> and does do neurologisting sort of take responsibility for

anticipating, for instance, at some point ken is less able to communicate a discomfort or a problem that would be an indication of some other problem, and so is he the point person for making sure that there are, they're keeping up with what needs to be monitored? >> he is. >> okay. >> he is. in fact, last, our last appointment he addressed that very issue. just knowing that the disease is progressive -- >> right. >> -- and we will be looking at different living situations and so forth. so he has been the point person for that for which i'm very grateful. >> great. well, thank you very much. thank you for coming and testifying today. appreciate it. >> thank you. >> thank you, mr. chairman. >> thank you, smoother toomey. -- senator toomey. we have talked about this issue a number of times, and i look forward to working very closely with you. >> thank you. >> let me go to the next

question. this will involve you, ms. demars, as one of the payers and employers. we've talked a lot about medicare, for example, which i've put a special focus on. but chronic disease is often diagnosed well before a patient becomes medicare eligible. in your view, what strategies can the committee pursue, again, in a bipartisan kind of fashion so that when individuals age into the medicare program, they're going to be healthier than they would have been otherwise? >> well, i think the transition to medicare and the health status of people coming into medicare, of course, is contingent upon the health care and the lifestyles that they're living prior to medicare age. so i'm thinking about an answer

to your question that how could, how could congress help promote better health pre-medicare for people with chronic conditions. for employers, for employers we focus on early detection. as i said earlier, we have a vested interest in the health of our work force, and so focus on things like health risk appraisals with biometrics screenings which often times detect -- >> you all, you all offer those biometric screenings? >> yes. yes. many of our member companies do annual biometric screenings at work for a couple of reasons. the first is as an employer they want to understand the aggregate health of their employee population and use that baseline data as a way to monitor the

impact of workplace-based wellness and health promotion programs. but conducting those biometric screenings also provide individual information, confidential information to each of the participants. and unfortunately or fortunately, often times people are learning that they have a chronic condition for the first time through that biometric screening. so early detection is key. and then optimal management once people are diagnosed. one of the things that the alliance is doing is realigning how we pay physicians based on optimal care of die bee tease, a -- diabetes, a measure that we're using. so that addresses early detection and only begins to address the need to realign financial incentives. then there is the whole how do

we help people live healthier lifestyles, and that is a complicated question. employers work on that because they have people there during the workday, but it's a much bigger issue than one that employers can tackle alone. >> i very much would like to follow up with you and am glad you're on the program, because we clearly want to see if we can come up with some fresh, creative ways to involve employers in this. i think we all understand that many of the underlying challenges, you know, patients face when interacting with the health care system are present for both in medicare and the nonmedicare population. and to the extent that we can find a way as i describe it to age into, you know, medicare with having played offense to the greatest extent possible as

you talked about, biometric screenings and the treatment kind of approaches, i think that makes a lot of sense. so we're very interested in working with all of you, the employers. >> that's excellent. i think there's great opportunities for alignment between public sector and commercial employers who are, share the same interests in promoting health and optimal health care at an affordable cost. >> let's turn to another topic that is really not for the faint-hearted, but we have to figure out how to make additional progress, and that is how we ought to go about using this array of health information technology. i call it the treasure-trove that we now have of all this technology. it's electronic, you know, medical records, and, you know, ideally this would be good for patients because patients would

have this information, it'd be good for providers because it's going to help do a better job of coordinating care. also ms. demars made a point and i'm interested about the medicare claims data, how you use that. so why don't we just see if we can bring the four of you into this discussion about the health information technology and start with you, ms. dempsey, and you, mrs. lehmann. with respect to your ability to access all this medical information from the various doctors, how is that, you know, working out? is it a useful tool? is it being shared? is it hard to figure out who to go to for what? tell me your thoughts on that, ms. dempsey. >> i don't know that it's hard to figure out who to go to once

you call the doctor can's office -- doctor's office and explain to them what you want. then you may wait on hold while they try and figure it out of who they need to get you to and in what hands. but, no, for me i haven't found that that's, that that's a problem or a difficulty. >> you're able to get your hands on the information you need? >> not right at the time, but, you know, through a process, yes. >> and it's fairly useful? >> i'm sorry? >> and it's fairly useful to you? >> yes. sometimes i don't want get exactly what -- i don't get exactly what i need to be useful, but i will eventually. >> and you, mrs. lehmann? tell me about your experience. i call it the treasure-trove of data. sometimes you almost wonder if there's too much, and tell me

about how your experience is with respect to accessing all this information from your various doctors and possibly if there are any suggestions you have on how the information could be more useful to patients like yourself and ms. dempsey and others. >> we have a binder at home, each one of us has a binder, and after the appointments with the neurologist we take it home and get the three-hole punch out and put it in the binder. but that's the only medical report that we receive. ken does not receive anything from the cardiologist, and if i don't go with him, i have no idea what has transpired other than his relating to me what has transpired. nor do we get any record from the internist who just makes a follow-up appointment but never

gives any specific information from that appointment. but i so appreciate when i do get that information from the neurologist. i'm always there, but i also can review what has transpired. and any referral that he may give us he puts down the phone number so everything that i need is right on those sheets. so that is, that's wonderful. >> so you're doing well with the neurologist and on the cardiologist front and the interrist front things are coming -- internist front things are coming up a little short. >> exactly. >> okay. then let's get our providers and our payers into this whole question of the health i.t. i know, dr. bornstein, from being aware of your good work that you all have put a lot of effort into trying to make health information technology

work. what do you think the big challenges, you know, are in terms of how we tackle this and even apropos of ms., mrs. lehman n and mrs. dempsey. mrs. dempsey said she thought it worked okay, and sometimes it's hard to pry it out, and mrs. lee lehmann had some times when it worked and what it didn't work. >> as you say, it's not for the faint of heart, and it's a big topic. but i think exactly as you heard from. [applause] dempsey and. [applause] lee match -- lehmann, you know, at emory we're all connected, we have a patient portal and so patients can see their lab results, we can communicate with patients about those lab results

x that's a beginning -- and that's a beginning. and our goal is to get for the whole record to be available for the patients. but it has to be done carefully because sometimes not everybody wants to read everything that's in there, and that involves some additional research that needs to be to done as to how best we use these tools. but then when you start moving across systems, there are all kinds of barriers. and while we can see everything that we're doing, you know, frequently a patient will be seeing a specialist outside of our system. the patient may or may not be getting the information from that specialist, and we may or may not be able to get that information. so that's the major barrier. meaningful use will help move people towards sharing of information, but it's a slow process, and it's had its own unintended consequences. i think more than anything we need more research to understand how best to use this health information technology. like everything else we've been talking about there, there are

unintended consequences to all this. we need to learn how to be smart about it, but i think it's an important tool. >> thank you. and i'm struck that you characterized it as a patient portal, mrs. lehmann described it as her binder and the like. obviously, we're going to have to try to figure out ways to make this tool user-friendly for both the patient and the providers. and, you know, i continue to hear from, you know, providers, you know, describe this kind of water, you know, torture kind of routine where they're up until, like, 2:00 in the morning trying to fill out various and sundry kind of records. and you just have this picture in your head what's this all about? we've got providers up in the middle of the night trying to work on their charting. we need them ready to go at the crack of dawn to give the kind of quality health care services that are so important to our

patients and their caregivers. so we're going to ask you some more questions, dr. bornstein, on this. and i was interested for you, ms. demars, on this medicare claims data. and as you know, senator grassley and i have been very involved in the initial efforts to make a significant amount of data, you know, available. but what you interested -- what you're interested in doing is also extremely important because you want to really get it down to the patient, you know, level. and we're going to have to figure out a way to make that doable so it protects the patient's privacy and the like. tell us if you could kind of wave your wand as an employer trying to deal with medicare claims data down at the individual level, what would you be trying to do? >> so, senator wyden, we are one of the founding members of the wisconsin health information organization which is an

all-peer claims database to which payers across wisconsin and self-funded coalitions like the alliance contribute data. we're fortunate in that it represents 70% of the care for wisconsin patients. the big hole is medicare data. and as dr. bornstein commented earlier, the task of doing physician-specific information is tricky and sensitive and critically important. and the more data we have to work with, the better we'll be able to do. in addition, not just claims data, but through health information, our significant investment as a country in health information technology and health information exchange, we look forward to the day when clinically important indicators can be fed into the administrative claims data to allow us to do a much more

sophisticated job of risk adjusting performance measurement to take into consideration system of the things that dr. bornstein said. >> you all have been a terrific panel and given us a whole host of valuable ideas. i've been scribbling away, as you can, you can see. two hours in let me kind of give you my take with respect to where we are. and i think your testimony has been so so valuable. -- has been so valuable, and you could see senators on both sides of the aisle, nobody talked about what's the democratic approach the deal with chronic disease, what's the republican approach to deal with chronic disease. how's it going to be user-friendly for patients. i'll tell you, my own judgment is that, you know, chronic

disease has really gotten short shrift in the debate with respect to health care in america. it's gotten short shrift in the debates. and i don't think it happened, you know, deliberately. i see absolutely no evidence that a senator got up in the morning and said i want to be rotten to those with, you know, chronic disease, or i don't want to pay any attention to this. i think what happens in the congress is you get up and off you go for 12, 14 hours to try and tackle things, and a lot gets lost. and i think what you heard today from senators again on both sides of the aisle is those days are over. those days are over when chronic disease gets short shrift. and you saw determination among senators to look at both the under 65 population and the over

65, you know, population. i came to this initially in terms of the over 65 population for a variety of reasons. my background, working with the gray panthers. ms. demars, also senator portman and i have introduced something called the medicare better health rewards program to create incentives for those on medicare to lower their blood pressure and hoer their cholesterol, smoking cessation and the like. so that's where i started. but what you heard today from senators is that they very much understand that link between the under 65 population and the over 65 population in trying to put in place what amounts to a seamless web of services so that, in effect as i touched on with you, mrs. demars, when

americans age into medicare, you will have already begun the heavy lifting. and be i could go right down the row with each one of you and thank you for the specific contributions that you have made, and because i work primarily with patients over these years, you know, since before i got elected to congress, i'm leaving with that picture, ms. dempsey, of all those trays and trying to imagine what it is like every single day, day in, day out, to make your way through this. and you've been dealing with it for a long time. to you, mrs. lehmann, thank goodness we have caregivers for alzheimer's patients. my mom got to go to a wonderful, wonderful facility, channing house in palo alto, california, where they did a great job. i'm a senator, and this is the area i specialize in. my goodness, so many patients don't have what your husband

has, so thank goodness for you. and, dr. bornstein, you've been with us, you've been with senator isakson and i since this journey began, and we very much appreciate the good counsel you've given us. and to you, ms. demars, we hadn't met before today, but you sure account well for the employers. i know senator hatch urged us to have you on the panel, and i'm sure glad that he did. so the days when chronic disease got short shrift in the debates about health care in america and in the congress are now, with this panel, they are officially over. and you all have sort of been present to get this launch off in the right direction. so i thank you. god bless, and the hearing's adjourned. [inaudible conversations] >> so that wraps up this hearing on treating chronic illnesses. this is part of our weeklong

presentation of congressional hearings. if you missed any of it, you'll hear it again today at 5:30 p.m. eastern. and we wrap up tomorrow with a hearing on patient safety. >> here is what's coming up today on c-span2. next, the senate health committee hears testimony about black lung suffered by coal miners. then today's edition of "washington journal" in its entirety. and later, a hearing looks at military retirement benefits. join us later for more booktv. tonight, a look at the book industry. we'll tour publisher simon & schuster, visit the gaithersburg book festival and discuss the future of brick and mortar bookstores. that starts at eight eastern. on c-span3 at eight, american history tv. tonight's theme, music and history with a program on world war i and american music. and a discussion on music as a catalyst for social change. on c-span at eight, voting

rights and election law with a panel discussing the topic. and an hour later, ethnic and racial innuendos in political campaigns. it's part of a conference on ethics and campaigning at nine eastern also on c-span. c-span2, providing live coverage of the u.s. senate floor proceedings and key public policy events. and every weekend, booktv. now for 15 years the only television network devoted to nonfiction books and authors. c-span2, created by the cable tv industry and brought to you as a public service by your local cable or satellite provider. watch us in hd, like us on facebook and follow us on twitter. >> a senate health subcommittee convened a hearing earlier this year on coal miners affected with black lung disease. subcommittee members heard from former west virginia coal miner robert bailey on the health and financial challenges he faces.

members also heard from deputy labor secretary chris lu who vowed to address the backlog of black lung cases. senator bob casey chairs this hour, 20 minute event. >> okay, good morning, everyone. the subcommittee hearing will come to order. i want to thank the witnesses who are with us, our ranking member, senator isakson, for his presence here today and his work to help schedule this hearing and to ask questions of our witnesses. today the subcommittee on employment and workplace safety convenes to focus on an issue that doesn't get a lot of attention. in particular, we're here today to talk about and to focus on the alleged actions of certain