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S. HRG. 113–647 

CHRONIC ILLNESS: ADDRESSING 

PATIENTS’ UNMET NEEDS 

HEARING 

BEFORE THE

COMMITTEE ON FINANCE 

UNITED STATES SENATE 

ONE HUNDRED THIRTEENTH CONGRESS 

SECOND SESSION 

JULY 15, 2014 

( 

Printed for the use of the Committee on Finance 

COMMITTEE ON FINANCE 

RON WYDEN, Oregon, Chairman 

JOHN D. ROCKEFELLER IV, West Virginia 

CHARLES E. SCHUMER, New York 

DEBBIE STABENOW, Michigan 

MARIA CANTWELL, Washington 

BILL NELSON, Florida 

ROBERT MENENDEZ, New Jersey 

THOMAS R. CARPER, Delaware 

BENJAMIN L. CARDIN, Maryland 

SHERROD BROWN, Ohio 

MICHAEL F. BENNET, Colorado 

ROBERT P. CASEY, Jr., Pennsylvania 

MARK R. WARNER, Virginia 

ORRIN G. HATCH, Utah 

CHUCK GRASSLEY, Iowa 

MIKE CRAPO, Idaho 

PAT ROBERTS, Kansas 

MICHAEL B. ENZI, Wyoming 

JOHN CORNYN, Texas 

JOHN THUNE, South Dakota 

RICHARD BURR, North Carolina 

JOHNNY ISAKSON, Georgia 

ROB PORTMAN, Ohio 

PATRICK J. TOOMEY, Pennsylvania 

JOSHUA SHEINKMAN, Staff Director 

CHRIS CAMPBELL, Republican Staff Director 

(II) 

C O N T E N T S 

OPENING STATEMENTS 

Page 

Wyden, Hon. Ron, a U.S. Senator from Oregon, chairman, Committee on 

Finance .................................................................................................................. 1 

Hatch, Hon. Orrin G., a U.S. Senator from Utah ................................................. 3 

WITNESSES 

Dempsey, Stephanie, patient, Blairsville, GA ....................................................... 6 

Lehmann, Mary Margaret, caregiver, Minneapolis, MN ...................................... 8 

Bornstein, Dr. William A., chief quality and medical officer, Emory Healthcare, Atlanta, GA ................................................................................................. 11 

DeMars, Cheryl, president and CEO, The Alliance, Fitchburg, WI .................... 13 

ALPHABETICAL LISTING AND APPENDIX MATERIAL 

Bornstein, Dr. William A.: 

Testimony .......................................................................................................... 11 

Prepared statement .......................................................................................... 33 

Responses to questions from committee members ......................................... 39 

Burrell, Chet: 

Prepared statement with attachments ........................................................... 46 

Responses to questions from committee members ......................................... 56 

DeMars, Cheryl: 

Testimony .......................................................................................................... 13 

Prepared statement .......................................................................................... 61 

Dempsey, Stephanie: 

Testimony .......................................................................................................... 6 

Prepared statement .......................................................................................... 65 

Franken, Hon. Al: 

Prepared statement .......................................................................................... 67 

Hatch, Hon. Orrin G.: 

Opening statement ........................................................................................... 3 

Prepared statement .......................................................................................... 68 

Klobuchar, Hon. Amy: 

Prepared statement .......................................................................................... 71 

Lehmann, Mary Margaret: 

Testimony .......................................................................................................... 8 

Prepared statement .......................................................................................... 73 

Responses to questions from committee members ......................................... 76 

Wyden, Hon. Ron: 

Opening statement ........................................................................................... 1 

Prepared statement .......................................................................................... 79 

COMMUNICATIONS

American Academy of Family Physicians .............................................................. 81 

American Academy of Physician Assistants .......................................................... 85 

American College of Clinical Pharmacy (ACCP) ................................................... 90 

American Diabetes Association .............................................................................. 93 

Diabetes Advocacy AllianceTM ................................................................................ 98 

National Association of Chain Drug Stores (NACDS) .......................................... 106 

National Community Pharmacists Association (NCPA) ....................................... 109 

Special Needs Plan Alliance (SNP) ........................................................................ 112 

(III) 

(1) 

CHRONIC ILLNESS: ADDRESSING 

PATIENTS’ UNMET NEEDS 

TUESDAY, JULY 15, 2014 

U.S. SENATE, 

COMMITTEE ON FINANCE, 

Washington, DC. 

The hearing was convened, pursuant to notice, at 10:08 a.m., in 

room SD–215, Dirksen Senate Office Building, Hon. Ron Wyden 

(chairman of the committee) presiding. 

Present: Senators Stabenow, Carper, Bennet, Casey, Warner, 

Hatch, Thune, Isakson, and Toomey. 

Also present: Democratic Staff: Michael Evans, General Counsel; 

Hannah Hawkins, Research Assistant; Elizabeth Jurinka, Chief 

Health Policy Advisor; Matt Kazan, Health Policy Advisor; Tom 

Klouda, Senior Domestic Policy Advisor; Jocelyn Moore, Deputy 

Staff Director; Joshua Sheinkman, Staff Director; and Kelly Tribble 

Spencer, Detailee. Republican Staff: Erin Dempsey, Health Care 

Policy Advisor; and Jay Khosla, Chief Health Counsel and Policy 

Director. 

OPENING STATEMENT OF HON. RON WYDEN, A U.S. SENATOR 

FROM OREGON, CHAIRMAN, COMMITTEE ON FINANCE 

The CHAIRMAN. The 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—and in those early days, I was co-director of the 

Oregon Gray Panthers, with a 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, they would head to the hospital, they would 

get treatment, and they would head home. 

In 1970, nearly 70 percent of Medicare spending was for hospital 

care. Now that number is closer to 40 percent. The change shows 

how Medicare is very different than it was 4 decades ago. Rather 

than broken ankles or pneumonia, Medicare is now dominated by 

chronic conditions such as cancer, diabetes, and heart disease. 

More than two-thirds of those on Medicare now are dealing with 

challenging multiple chronic conditions. That care accounts for almost all—93 percent—of Medicare spending. 

2 

And we are going to hear today that it is not just seniors who 

are affected by chronic illness. Half of all American adults have at 

least one chronic condition. These diseases account for 70 percent 

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 compounded as chronic illnesses 

become more common. In fact, there are a number of health care 

experts who have warned that this generation could be the first in 

modern times to have shorter life spans than their parents. And 

this is not just a health issue. The growing prevalence of chronic 

disease is also 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 to change. And I will repeat that: it has to change. Doctors and hospitals often do not coordinate care or even talk to one 

another. Patients receive medication for one disease that conflicts 

with another. Paper medical records force time and energy away 

from patient care only to be spent on burdensome red tape. There 

is even data showing that caregivers of those with chronic disease 

face higher rates of stress and depression and have higher mortality rates. Virtually all Americans get touched by these kinds of 

issues, and certainly those suffering with chronic diseases are hurt 

the most by the flaws in American health care. 

This morning’s hearing is going to 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 is going to hear how the tragedy of chronic disease is exemplified by a single mom who, before her 31st birthday, had major 

heart surgery and can no longer work or even drive a car because 

of the onslaught of these diseases. 

We are going to hear about patients with multiple chronic conditions who are left on their own to shuttle themselves between a 

whole array of different providers that often are located hours 

away from each other. We are going to hear a story from a wife 

struggling to take care of a husband with Alzheimer’s, trying to 

make sure that the doctor appointments are kept, medication is 

taken, and the marriage is intact. 

I think 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 can find bipartisan solutions 

to meet the challenges and strengthen the American health care 

system. I am very much committed to working with Senators on 

both sides of the aisle. 

[The prepared statement of Chairman Wyden appears in the appendix.] 

The CHAIRMAN. Let me recognize Senator Hatch. 

3 

OPENING STATEMENT OF HON. ORRIN G. HATCH, 

A U.S. SENATOR FROM UTAH 

Senator HATCH. Thank you, Mr. Chairman. 

I am pleased that we are finally 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, and for good reason, in my view. It is imperative 

that the Senate start exercising proper levels of oversight to determine whether or not the law is working as promised. I do not say 

this out of politics or partisanship, but because patients, taxpayers, 

and policymakers deserve honest answers. 

That said, today this committee has an opportunity to delve into 

the very important topic of chronic illness. This is one area where, 

if we choose to work together, I believe the committee can find real 

bipartisan solutions that not only improve care coordination and 

lower overall health care costs, but also give complex patients better tools to more effectively navigate the health care system. 

The Medicare Payment Advisory Commission has long said that 

fee-for-service Medicare creates silos, incentivizing providers to deliver more care, not necessarily higher-quality coordinated care. 

The successful Medicare Advantage program does give patients the 

option to receive benefits from private plans that are incentivized 

to manage care across all settings. However, traditional Medicare 

fails to meaningfully encourage providers to engage in laborintensive and time-consuming patient care coordination. 

Perhaps this is why in 2013 Medicare Advantage enrollment increased by 9 percent to 14.5 million patients. That number represents 28 percent of all Medicare enrollees. Even with these advances, today’s health care system remains fragmented, and there 

is significant evidence that communication between providers is 

lacking both in the Medicare program and in the private sector. 

The Medicare Payment Advisory Commission estimates that 

Medicare patients with five or more chronic conditions see an average of 13 physicians and fill an average of 50 prescriptions each 

year. So it is no surprise that patients with high-cost chronic conditions routinely visit multiple specialists, often repeat medical histories and tests, receive inconsistent medical instructions, do not 

get health transitioning from one site of care to another, and use 

more expensive care settings when it may not be necessary. 

Today, one remarkably brave patient, as well as a devoted and 

loving caregiver, will share their personal stories with us. Their 

testimony will show that the current health care system is not 

serving all patients well. 

But there is hope. We are also going to talk to a medical provider 

and an employer about the promising efforts underway to address 

the unique needs of chronic care patients. I applaud these innovative approaches, but we all need to know that there are no easy answers. Developing and implementing policies designed to improve 

disease management, streamline care coordination, improve quality, and reduce Medicare costs, is a daunting challenge. 

Based on past experiences, with the Medicare program in particular, there is still much more work to be done. For more than 

a decade, the Centers for Medicare and Medicaid Services, or CMS, 

4 

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 at best 

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, these 34 programs had little to no effect on hospital admissions or Medicare spending. 

In 2010, Obamacare created Accountable Care Organizations, 

ACOs, which, of course, allow certain providers to work together to 

coordinate and integrate Medicare services. These provider groups 

must meet specific quality standards in order to share in any savings they achieve for the Medicare program. The ACO initiative is 

relatively new. There is no definitive data to prove if ACOs actually 

improve quality, if they show any promise to save Medicare money, 

or if they are simply failing. 

While the jury is out on whether these ACOs will produce results, Obamacare also gave the Secretary of Health and Human 

Services broad authority to create and implement new Medicare 

pilot programs. Through the Center for Medicare and Medicaid Innovation, CMMI, the Obama administration is actively conducting 

care coordination programs in various Medicare settings. My hope 

is that the CMMI research will yield results. As we all know, 

health care costs place enormous strain on the Federal budget. By 

identifying cost-effective, data-driven ways to improve patient 

health, policymakers can better target scarce Federal resources to 

get more value for the dollars spent. 

U.S. health care spending grew 3.7 percent in 2012, reaching $2.8 trillion or $8,915 per person. In fact, total health care spending consumes 17.2 percent of the Nation’s gross domestic product, 

or GDP. Adding insult to injury, last year the Medicare trustees 

issued a report showing that the Part A hospital insurance trust 

fund deficit reached $23.8 billion and will be exhausted in 2026. 

Given the current fiscal reality, we have to find ways to provide 

high quality care at greater value and lower cost, all without adding to the deficit. So I am glad we are holding this first hearing 

to understand the problem, but we cannot stop there. I believe this 

must be the start of a long-term transparent discussion with additional stakeholders, including the administration, CBO, MedPAC, 

and others that will allow us to work together to identify solutions 

in an open and transparent way. 

Again, thank you, Mr. Chairman, for holding this hearing today. 

I look forward to hearing from our panel of witnesses. I think it 

will be very interesting. 

The CHAIRMAN. Thank you, Senator Hatch. 

[The prepared statement of Senator Hatch appears in the appendix.] 

The CHAIRMAN. Also, let me recognize your years and years of 

advocacy in terms of trying to come up with fresh, creative approaches for our health care challenges. 

For our witnesses, you should know that 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 to 

5 

chronic disease and health care services, and the same is true on 

the other side of me. So flanked really by 6 percent of the United 

States Senate that cares passionately about these issues, and I am 

very pleased that all of you could be here. 

Now, we are going to hear from Stephanie Dempsey, a chronic 

disease patient from Blairsville, GA. Ms. Dempsey is currently taking on coronary artery disease, Lupus, a seizure disorder, and arthritis. And we very much appreciate your willingness to come, Ms. 

Dempsey. 

Mrs. Mary Margaret Lehmann is here. She is a caregiver for her 

husband, Ken Lehmann, who is facing Alzheimer’s, a disease my 

mother faced. 

Dr. Bill Bornstein comes to us from Emory University. Dr. Bornstein is the chief medical officer and chief quality officer for Emory 

Health. 

Finally, Ms. Cheryl DeMars, the president and chief executive officer for The Alliance, is here. The Alliance is a cooperative of employers who are focused on the delivery of health care benefits. 

I also want to note that Chet Burrell, the president and CEO of 

CareFirst BlueCross BlueShield, was scheduled to testify. Many of 

us know him and his good work. But as we all know, late last night 

the skies burst open, and Mr. Burrell is not able to join us. 

Senator Isakson, we do have two witnesses from Georgia. You 

have done a lot of work on these issues, and I appreciate it. Let 

us have you introduce Ms. Dempsey and Dr. Bornstein to the committee. 

Senator Isakson? 

Senator ISAKSON. Thank you, Mr. Chairman. 

Georgia is very fortunate to have two of our four witnesses today, 

and I am very pleased to introduce both of them to the committee 

and to the audience. 

First, Stephanie Dempsey. Stephanie is a relatively new citizen 

of Georgia who lives in Blairsville, GA, which is the capital of the 

Blue Ridge Mountains of north Georgia and a rural part of our 

State. She deals with multiple conditions and can talk firsthand 

about the challenges of having multiple conditions and reaching 

the services that are necessary in a rural area of the State. 

Dr. William Bornstein is a tremendous individual whom you and 

I have met before, Mr. Chairman, because he was at our rollout, 

if I am not mistaken, when we first brought the coordinated care 

bill to the committee. He is the chief quality and medical officer for 

Emory Healthcare in Atlanta, which is the home of the Emory University Hospital, which is one of the major teaching hospitals in the 

United States and a major system that provides health care to a 

significant portion of our 10.2 million citizens in Georgia. He is a 

nationally recognized leader in the use of health information and 

technology to drive better outcomes and decisions, and I think the 

committee will really like hearing from him because he is not 

somebody who just talks about doing it, he has done it, implementing successful systems throughout the Emory Healthcare system. 

We are glad to have Dr. Bornstein here today. 

Thank you, Mr. Chairman. 

6 

The CHAIRMAN. Thank you, Senator Isakson. And thank you for 

your good work on these issues. I literally could go around the 

room and point out the efforts of every Senator who is here, and 

I very much appreciate your leadership. 

Let me also say to our witnesses that your written statements 

will be included in the record automatically—all that you have put 

together for your written statement. If you could perhaps summarize your key views for your oral presentation, that would be very 

welcome. 

Let us start with you, Ms. Dempsey. 

STATEMENT OF STEPHANIE DEMPSEY, 

PATIENT, BLAIRSVILLE, GA 

Ms. DEMPSEY. Chairman Wyden, Ranking Member Hatch, and 

the 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 Blairsville, GA, and I have been battling multiple chronic medical conditions for much of my life. 

I have always considered myself a middle-class American. I had 

a well-paying job, I owned my own home, and I 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 today better understand what people with chronic medical 

conditions face day in and day out, and 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 impacted 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 stints, another bypass surgery, and 

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 very difficult to 

keep track of all my medicines. So I use these different baskets to 

keep track, and every one is labeled by condition, with my coronary—— 

The CHAIRMAN. Ms. Dempsey, can I ask a question? 

Ms. DEMPSEY. Yes. 

The CHAIRMAN. That basket is what you have to navigate 

through on a daily basis? 

Ms. DEMPSEY. Absolutely, every day and every night. They are 

labeled by condition so that I can stay 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 debiliVerDate Mar 15 2010 20:05 May 20, 2015 Jkt 000000 PO 00000 Frm 00010 Fmt 6633 Sfmt 6633 R:\DOCS\94614.000 TIMD
7 

tating. 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 simply had no other choice. 

This has been difficult to accept, but this is my reality. Battling 

a number of complex illnesses 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 medicine that my son, who is now 20 years old, 

needed for his own health condition. This required us to scrape 

money together to make sure that he had the necessary medicine 

that he required. 

Paying for my numerous costly medications was out of the question. Therefore, I was unable to purchase them. As a result, I was 

hospitalized five times over the course of 6 months, which resulted 

in five additional stints. As it became more difficult for me to manage 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 2 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 also must see multiple 

doctors. I have a cardiologist who helps me manage my heart disease, a neurologist and a neurosurgeon who help me manage my 

seizure disorder, and I have a rheumatologist who helps me manage my Lupus and my arthritis. I interact with countless other 

health care professionals, such as nurses, physician’s assistants, 

therapists, and others. 

Although my doctors are all well-intentioned, they often do not 

talk with each other or share information about my care. This ultimately leaves me to be my own health care coordinator. 

To give you an example, my Lupus disorder keeps my body in a 

constant state of inflammation for which one of my specialists prescribed me a 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 seizure side effect. Getting this resolved 

took days, 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 

very exhausting, but it is my life at stake, and I do not have a 

choice but to be engaged. 

8 

To give you another example, I recently had to change to a new 

primary care doctor since my former doctor is now only accepting 

private-pay patients. This has been a challenge as it will take some 

time for me to become familiar with my doctor and for her to become familiar with me and my medical history. 

In an ideal world, I would want my primary care doctor to manage all of my care, but I have come to realize that 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 and his health benefits terminated, I was 

left without insurance. Fortunately, I was able to qualify for Medicare in 2004 because of the Federal Disability Act. Although it took 

2 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 $51,000 for an overnight visit. Medicare covered all but $1,138 of that fee. 

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. 

The CHAIRMAN. Ms. Dempsey, thank you. You have delivered a 

powerful and eloquent wake up call here that really speaks to the 

dimensions of chronic illness, and I want you to know that I think 

the strongest, richest country on earth can do better by those who 

have these kinds of chronic conditions. And you ask that you not 

be forgotten, and you have Senators here, Democrats and Republicans, who are committed to making sure that does not happen, 

and I thank you for it. 

[The prepared statement of Ms. Dempsey appears in the appendix.] 

The CHAIRMAN. Mrs. Lehmann, we welcome you from Minneapolis, MN. 

STATEMENT OF MARY MARGARET LEHMANN, 

CAREGIVER, MINNEAPOLIS, MN 

Mrs. LEHMANN. Thank you. Good morning, Chairman Wyden, 

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 impacts more than 5 million Americans living 

with the disease and their 15.5 million caregivers. These men and 

women living with Alzheimer’s are husbands and wives, fathers 

and mothers, brothers and sisters, business leaders, medical professionals, Republicans, Democrats, and my dear husband of 50 years, 

Ken, is one of them. 

9 

I am honored to be here today to share our story and discuss the 

issues facing individuals with Alzheimer’s and their caregivers. The 

more we share our story and talk about Alzheimer’s, the less of a 

stigma it will become for others facing this disease. 

While Ken is fortunate to have a devoted care partner to advocate for him and, finally, a definitive diagnosis, initially a care plan 

to ensure that he lives as well as possible with Alzheimer’s was not 

available to us. Our journey to get here was long and difficult. 

There are many who live with this disease who never get the care 

and support they need. 

Ken’s tentative diagnosis came in October of 2009. However, I became aware of changes in his personality and behaviors as far back 

as 1995. It was then that I began to notice his withdrawing from 

family, friends, and social situations, having difficulty navigating 

familiar places, as well as challenges in executive function involving problem-solving and reasoning. His judgment was often compromised, especially in regard to our finances. Ken communicated 

to me that he was having difficulties at work, particularly learning 

new computer programs. 

We were both patients of a well-known, highly respected internist for 30 years. Over the years, I reported my observations to 

him. Our internist brushed off my concerns that these signs might 

be something serious by responding with, ‘‘Well, these things can 

happen,’’ or ‘‘It might be just part of his aging.’’ 

I would tuck away my fears until the next time and the next 

time. The wake up call, however, 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 

encouraged Ken to see another doctor to learn the reasons why. 

After seeing four neurologists and three internists in a year and a 

half, Ken was finally diagnosed definitely 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. 

Following his diagnosis, his second internist prescribed Aricept 

and told him to return in a year for a checkup. After receiving the 

diagnosis, Ken went through what he calls the three Ds—denial, 

depression, despair. I was devastated and desperate for more answers. We were given the diagnosis, but no information on what to 

expect or how to deal with the symptoms or how to even manage 

his atrial flutter along with the Alzheimer’s. 

After three appointments with three different neurologists, we 

were finally able to find one with experience in treating people 

with Alzheimer’s. Today, Ken is a patient at the Center for Memory and Aging in St. Paul with Dr. Michael Rosenbloom. 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 Schriver’s HBO documentary ‘‘The Alzheimer’s Project’’ reports that 74 percent of caregivers do not survive the persons for 

whom they are caring. It is not only the person with the disease 

who needs care and support, but the care partner as well, especially to reduce stress. From our networking with others, we have 

10 

also learned that our story, our financial hardship associated with 

the disease, is not unique. 

In many ways, I see my role as Ken’s care partner much like 

that of an operations manager. I try to make sure he can be 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. I find myself monitoring, monitoring, and monitoring him throughout the 

day to ensure his safety and well-being. 

Dr. Terry Barclay, neuropsychologist at the Center for Memory 

and Aging, submits that ‘‘Living with Alzheimer’s can be lengthened 10 percent with medication, but 90 percent by living well, and 

especially with socialization.’’ 

Through our experience, I have learned that there are definite 

deficiencies in our health system when it comes to dealing with 

Alzheimer’s. Far too many physicians are not familiar 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. Ken sees an internist, a cardiologist, and a neurologist to deal with various conditions. He carries a list of his 11 medications and supplements to each appointment to ensure that each physician is aware of what his other 

health providers have prescribed for him. Sadly, this is more often 

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 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. 

An epidemic is well upon us, and too many families are in a situation like ours, facing a fatal brain disease that currently we have 

no way to prevent, cure, or even slow the progression of, and we 

are left without a support system to guide us. 

As a Nation, we cannot afford to wait until Alzheimer’s bankrupts the Nation just as it already has so many hardworking 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. 

The CHAIRMAN. Thank you, Mrs. Lehmann. And in addition to 

hope, we have you, and I sort of see a size 7 halo over there by 

the witness table. And listening to your story, it also very much exemplifies what my mother dealt with. My mother had Alzheimer’s 

and dementia, she got a master’s degree from Yale in the days 

when no woman got a master’s degree, and we saw very much the 

same evolution of events you did, and I very much appreciate your 

coming. 

[The prepared statement of Mrs. Lehmann appears in the appendix.] 

11 

The CHAIRMAN. We have a number of champions here on this 

committee on both sides of the aisle, Democrats and Republicans, 

who want to follow up on your Alzheimer reforms, including me. 

So we thank you. 

Mrs. LEHMANN. Thank you. 

The CHAIRMAN. Thank you very much for it. 

Dr. Bornstein, welcome. 

STATEMENT OF DR. WILLIAM A. BORNSTEIN, CHIEF QUALITY 

AND MEDICAL OFFICER, EMORY HEALTHCARE, ATLANTA, GA 

Dr. BORNSTEIN. 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 Isakson, who is Emory’s Senator and a good friend and 

strong supporter of our work. 

As the Chief Medical Officer of Emory Healthcare in Atlanta and 

as a practicing endocrinologist, I know firsthand the challenges 

faced by our patients with multiple chronic medical conditions, 

about which you have 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, and a nephrologist for care of the kidney disease. 

And everything that each of us does, as you have 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 strives to take a 

patient-centered approach to treating a set of problems, but 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 reallocation of time, from face-to-face interactions, 

to time devoted to coordination of efforts among providers, and in 

non-face-to-face interactions, providing continuous care of patients. 

So in addition, we are hiring and training nurse care coordinators. We embed these nurses into primary care practices and feed 

them data identifying the highest-risk patients, and the care coordinators stay in touch with those patients, helping to make sure 

that they are doing well and, when they are 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 fee-forservice, I am in the awkward position of asking our health system 

to fund efforts that will reduce our revenue within a context of declining reimbursements like the 2-percent sequester cut and the 

ever-looming specter of SGR. 

12 

To try to deal with these challenges proactively, we have formed 

a clinically integrated network, the Emory Healthcare Network or 

EHN, which is our Accountable Care Organization, that provides 

extensive infrastructure and support for physicians in a collaborative and quality-based environment that drives outstanding performance, improves care coordination, enhances outcomes, and controls costs for our patients and our community. EHN is contracting 

with payers in ways that liberate us from the constraints of feefor-service and move us towards better alignment of needs among 

patients, providers, and payers. 

We now have a ‘‘shared savings’’ contract with BlueCross BlueShield and are negotiating similar contracts with other commercial 

payers. Under shared savings, if we are 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. 

It costs in the range of $6 million to $10 million annually to run 

EHN, and that does not fully include the costs incurred by private 

practices to connect to our Emory Health Information Exchange, 

which we require for their participation in EHN. 

As the leading academic medical center, we care for some of the 

most complex cases in the country. Emory has been remarkably 

successful in working within current constraints. Emory is the only 

health system in America to have more than one hospital ranked 

among the top 10 academic hospitals in the prestigious University 

HealthSystem Consortium Quality and Accountability Scorecard. 

Indeed, both of our eligible hospitals, Emory University Hospital 

and Emory University Hospital Midtown, have been in the top 10 

for the past 2 years and are ranked number 2 and number 3, 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 the triple aim of 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 is why we practice medicine. Current structures create frustration among our providers, as well as for our patients. 

Our primary care teams feel these frustrations most acutely, and 

these stresses contribute to the relative lack of interest in primary 

care and other non-procedural specialties. Frankly, it is easier and 

more profitable to do procedures than to try to coordinate care in 

our current system. 

Our Nation’s capacity to grow its physician workforce is predicated on doctors being able to do what they enter 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. 

13 

Thank you for shining a spotlight on the challenging issue of 

chronic care. I look forward to answering any questions you may 

have. 

The CHAIRMAN. Doctor, thanks for the help that you have given 

the committee and also for highlighting how flawed the incentives 

are in today’s system. And we look forward to questions. 

[The prepared statement of Dr. Bornstein appears in the appendix.] 

The CHAIRMAN. Ms. DeMars? 

STATEMENT OF CHERYL DeMARS, PRESIDENT AND CEO, 

THE ALLIANCE, FITCHBURG, WI 

Ms. DEMARS. Good morning, Chairman Wyden, Ranking Member 

Hatch, and members of the committee. I am here today to represent The Alliance, which is a not-for-profit cooperative owned by 

over 200 employers in Wisconsin, Illinois, and Iowa, who together 

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 value-based benefit 

designs, and by raising the bar on our expectations for health care 

delivery. 

Our efforts in wellness and in benefit design are important, but 

alone are insufficient to address the cost problems we face in 

health care. The results of our efforts are too modest and too slow. 

So simultaneously, we need to use our role as purchasers of health 

care to make faster progress, and that is the idea behind a new initiative that we are developing called Quality Path. 

Through Quality Path, we will move market share to high-value 

physicians and hospitals and, in doing so, overcome some of the 

barriers to faster progress; specifically, lack of 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 is how the program will work. First, Quality Path will 

evaluate individual doctor and hospital pairings. Consumers, patients, want and deserve information to help them understand the 

performance of their doctors. Yet, physician-specific public reporting remains an elusive goal, and the promise of the Physician Compare website is yet to be realized. We will address this unmet consumer need by requiring physicians to disclose their performance 

on quality measures as part of the 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 designate Quality Path providers. 

We have relied on input from the clinicians who deliver the care 

and their specialty societies, and have aligned with leading-edge 

public and private-sector initiatives. The most notable is the 

CMMI-funded SMARTCare project, which was developed by the 

14 

leadership of the Wisconsin chapter of the American College of Cardiology and the Wisconsin Medical Society. 

Doctors and hospitals that receive the Quality Path designation 

will score high on quality measures, will avoid exposing patients to 

harm associated with the overuse of imaging tests, will consult 

with patients and respect their preferences when multiple treatment options are available, and will talk with patients about future 

care needs and document their wishes for end-of-life care as appropriate. 

Finally, Quality Path will lower costs for employers and patients. 

We will be negotiating more aggressive, lower, bundled prices with 

warranties. This pricing will only be available to employers, our 

members, who agree to implement substantial financial incentives 

for their employees to choose Quality Path providers. That way, 

Quality Path will simultaneously reward patients who seek highvalue care and the providers that deliver it. 

Quality Path relies on access to data and the flexibility for purchasers to innovate, and that is where the Federal Government can 

help. Employer organizations like ours and the all-payer claims 

databases we rely on need access to Medicare data to enhance physician level measurement. We also need the flexibility to design 

plans that reward high-value care. And we need partners. Marketbased efforts like Quality Path will only succeed if there is a significant business case for providers. State and Federal Governments, acting in their 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. 

The CHAIRMAN. It is very helpful to have that employer input, 

Ms. DeMars. 

[The prepared statement of Ms. DeMars appears in the appendix.] 

The CHAIRMAN. Senator Hatch has tried to be in two places at 

once this morning, and he is very much needed in Judiciary. 

So, Senator Hatch, I am pleased to have you start. 

Senator HATCH. Well, I am grateful to all of you. Your testimony 

surely hit home here, and we want to do everything we can to help, 

and we will see what we can do. 

I am sorry that I am split between two committees—and I will 

go over to Judiciary—but I am very interested in everything you 

said and everything you have suggested. 

So with that, I hope you will forgive me for having this burden 

of two committees going at the same time. 

Thank you. 

The CHAIRMAN. Senator Hatch, thank you. You cannot quite be 

cloned, so it is great to have your leadership. 

Let me start with a question that I have been struck by, having 

kind of watched the odyssey of those with chronic disease over the 

years, really beginning in those Gray Panther days and then over 

the years. And what you bump up against first is the staggering 

burden, the truly staggering burden on patients and families. 

They have the disease, and then they have to try to figure out 

how to make their way through—as you, Ms. Dempsey, said so eloVerDate Mar 15 2010 20:05 May 20, 2015 Jkt 000000 PO 00000 Frm 00018 Fmt 6633 Sfmt 6633 R:\DOCS\94614.000 TIMD
15 

quently and you, Mrs. Lehmann—this sort of maze of treatments 

and medications and appointments. It just strikes me, it is like the 

system puts this gigantic boulder on your back, this overwhelming 

burden on your back, when you are trying to deal with chronic disease. 

Patients have several physicians. They have this—I always 

called it a mountain of prescriptions, but I guess I have to rename 

it now that I see tray after tray over there, Ms. Dempsey, consuming the witness table. They just delivered a phone book the 

other day to the staff, and people now have medical records the 

size of phone books. 

The first question I would like to see if we can get our arms 

around as we try to move forward is—and, as I have indicated, 

there are Senators here who have been really passionately interested in these issues: Senator Stabenow, for example, and Senator 

Toomey on this Alzheimer’s issue, Senator Casey looking at chronic 

disease for young people, and others—Senator Isakson, teaming up 

with me. 

There are a lot of Senators who care about this issue, and what 

I am struck by is, at the outset, how valuable to me, kind of by 

the seat of my pants, it would be to have one individual, one single 

individual, whether it is a nurse, a physician, another individual 

from the health care system, who basically would be the go-to person for coordinating the appointments and keeping track of the 

multiple doctors and making sure that one doctor communicates 

with another. That was the whole point of the electronic medical 

record. You did not want Dr. 3 to repeat all the stuff that Dr. 2 

and Dr. 1 did, but we are still trying to make sure that interconnection is there. 

So let us start with you, Ms. Dempsey, and you, Mrs. Lehmann, 

to get on the record how valuable it would be to you two to have 

one single individual. Now, we can have the debate about who it 

ought to be, but it seems important to have one single individual 

be that go-to person to coordinate the array of visits and services 

and the like. 

Let us start with you, Ms. Dempsey. 

Ms. DEMPSEY. It would be life-changing. It would be absolutely 

wonderful to be able to, I guess, free up some of my time and 

maybe even relax enough to know that I do not have to follow a 

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 who was the go-to person who would 

make sure that everything was done correctly and everything was 

coordinated between everyone else, it would be just invaluable. 

The CHAIRMAN. And you, Mrs. Lehmann? 

Mrs. LEHMANN. Not only would it be life-changing, it would be 

life-giving, because most of my time is spent feeling overwhelmed. 

Where do I call for this? Where 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 am going to need help. He weighs 

considerably more than I, and I am going to need help, and I find 

this very, very overwhelming. 

16 

If I had one person whom I could call and say, ‘‘How can we do 

this, how can you help me,’’ I would so appreciate that. 

The CHAIRMAN. Well, thank you both. I am going to have plenty 

of other questions after I make sure my colleagues get a turn. 

But literally, since my Gray Panther days, that struck me as the 

prerequisite to turning this around. You all have called it lifechanging and life-giving. I just would like to take some of that 

boulder off your shoulders. 

When you are dealing with the conditions that you have described this morning, and you have to figure out how to navigate 

this byzantine health system—I saw it with my mother, and I said 

to myself at one point, so here I am, I am a U.S. Senator, that is 

a pretty important position, and everybody in the health care system knew about it, and my mother got a master’s degree from Yale, 

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 my family, what is it like for everybody else who is not starting with that? 

That is what we have to turn around. 

So let me allow my friends to have at it. 

Next is Senator Stabenow. And you should know she has done 

extraordinary work on Alzheimer’s. I do not think a month goes by 

without Senator Stabenow talking to me about what we ought to 

be doing on this committee about Alzheimer’s. 

Senator Stabenow, welcome. 

Senator STABENOW. Thank you, Mr. Chairman, for your incredible leadership. And thank you to each of you for the role that you 

play and the important work that you are doing. 

Mrs. Lehmann, thank you, and Ms. Dempsey. And before I ask 

some questions regarding Alzheimer’s, I do want to just start, Mr. 

Chairman, by saying for the record that, while there are a lot of 

things that folks want to talk negatively about in the Affordable 

Care Act, because we have the Affordable Care Act, there are no 

more preexisting conditions. 

So, Ms. Dempsey, at least you 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 are more affordable options 

for people, and, while we are not doing everything that we can on 

cost savings, at least we are having the conversation on bundled 

payments and on coordination and the accountable care groups. 

In Michigan, we have seen some real savings to date on this. So 

there is more to do faster, but at least we are talking about quality 

of care and what needs to be done. And in my judgment, we have 

to talk about case management, Mr. Chairman, in a much more 

real way. 

First, let me just say for the record, the number-one cause of 

death of women in this country is heart disease. People do not realize that. One out of three deaths of women, Mr. Chairman, is because of heart disease. So we need to remind ourselves of that, because doctors do not understand, unfortunately. Women have different symptoms. They are diagnosed differently. Oftentimes, it is 

said it is stress when it is actually something happening in terms 

of heart disease. 

17 

We have a very important report coming out from the FDA, an 

amendment that I authored in the FDA Safety and Innovation Act 

that we passed, that is going to require an action plan for more 

participation of women in drug clinical trials, because women are 

different than men and have different reactions. 

So we at least want to make sure, Ms. Dempsey, that what you 

are carrying around in there is actually the best for you to have 

as a woman. So it is very important, the FDA action plan, Mr. 

Chairman, that we are waiting on, in August. 

Mrs. Lehmann, let me just say that your story emphasizes and 

reenergizes me to pass something that Senator Collins and I have 

introduced called the Hope for Alzheimer’s Act. We have 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 that you are talking about, to make that available; 

as well as documentation on the planning going into the medical 

records and so on—that on top of critical research that we have to 

continue to do, because there is hope, and we should be doubling 

down on that health research. 

But I am wondering if you could just speak to, if 15 years earlier 

you had been able to have the tools to diagnose your husband’s Alzheimer’s symptoms and so on, what difference would that have 

made to both of you in your lives if you had really known earlier 

and been able to get the care that you could have had at that time? 

Mrs. LEHMANN. It would have been tremendous, just absolutely 

tremendous. By the grace of God, I am still standing. That is how 

I feel. This last 15 years has been very, very difficult. 

It is the love that we have for each other that has truly sustained us. It is our faith and our family. Without those elements, 

I cannot imagine having been through this. 

Just going to the myriad of doctors and neurologists, 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 neurologist, that there was just a guide 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. 

Senator STABENOW. And it should not be that hard. It should not 

have been that hard. 

Mrs. LEHMANN. No, it should not. It should not. And if only a 

doctor—one of the very first doctors we had seen had referred us 

to the Alzheimer’s 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, ‘‘Call the Alzheimer’s Association. My dad had Alzheimer’s, and they were such a help to me. 

Maybe they will be a help to you.’’ 

So here is another instance of the caregiver help line, which I 

now refer to as my caregiver lifeline, being the beginning of the 

change. 

Senator STABENOW. That is a wonderful group. 

Mr. Chairman, I know you know this, but just for the record, let 

me say that one out of five Medicare dollars goes to the treatment 

18 

of Alzheimer’s, one out of five Medicare dollars. This is a huge 

issue, predominantly of quality of life and life itself, but it is also 

a huge issue for us in tackling costs. 

So I very much appreciate your doing this. And also, again, Ms. 

Dempsey, thank you for being here. I mean, listening to you, it is 

overwhelming just listening to you and just unbelievable what you 

are challenged with. So thank you very much for taking the extra 

effort to come and share your story. 

Ms. DEMPSEY. Thank you for your dedication. 

The CHAIRMAN. Thank you, Senator Stabenow. 

In addition, Mrs. Lehmann, you should know that Senator 

Toomey has spoken to us about Alzheimer’s, as has Senator Warner, and there will be very strong support in this committee on 

both sides of the aisle for reforms on Alzheimer’s. 

Before I recognize Senator Isakson, your Senators, Mrs. Lehmann, Senators Klobuchar and Franken, would like to submit 

statements for the record. 

I ask unanimous consent that the statements be submitted for 

the record. 

Hearing no objection, so ordered. 

[The prepared statements of Senators Klobuchar and Franken 

appear in the appendix.] 

The CHAIRMAN. We very much appreciate the good work that 

Senator Isakson has done in this area. He has been my partner 

now for many, many months. When you work with Senator Isakson 

on health reform, you are running with the right crowd. So I am 

very appreciative. 

Senator Isakson, your questions? 

Senator ISAKSON. Thank you, Mr. Chairman. 

Dr. Bornstein, thank you for your testimony, and thank you for 

coming to our rollout here. I guess it has been a year ago now since 

you came up on the coordinated care. 

Your testimony was very compelling on one point, and I want to 

kind of repeat a part of it. Your embedded care—what did you call 

it: care coordinators or nurses? Is that correct? 

Dr. BORNSTEIN. Yes, sir. 

Senator ISAKSON. You are not reimbursed through any system for 

those nurses, are you? 

Dr. BORNSTEIN. Correct. 

Senator ISAKSON. But you use them to coordinate the care of 

your patients. Is that correct? 

Dr. BORNSTEIN. Yes, sir. 

Senator ISAKSON. Which lessens the number of visits on a fee-forservice basis for which you are reimbursed. 

Dr. BORNSTEIN. Yes, sir. 

Senator ISAKSON. So, in other words, it costs more to do less and 

less to do more. 

Dr. BORNSTEIN. Yes, sir. 

Senator ISAKSON. So, if we were doing more care coordination, we 

would be in much better shape financially as a country, and we 

would lessen the burden of health care and improve its quality. Is 

that correct? 

Dr. BORNSTEIN. Exactly. 

19 

Senator ISAKSON. If Ms. Dempsey was your patient and you had 

an embedded care coordinator in the practice, would the, not misdiagnosis, but the improper prescription of the drug for rheumatology that affected the seizures have been caught by the care coordinator or by health information technology? 

Dr. BORNSTEIN. Well, I think the care coordinator could certainly 

play a role in that. Our information system would help alert us to 

that. I also believe in the important role of primary care—as in the 

earlier discussion—the fact that we need somebody who is kind of 

captaining the ship and looking at all those pieces. 

But I think there is another element, and the dependency on 

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, to give you an example, it is very similar to what Ms. Dempsey talked about, and I use a kind of a litmus test for how our system is performing. So, when I take care of a patient with diabetes 

who might be seeing another specialist, and that specialist considers starting the patient on glucocorticoids, an anti-inflammatory 

drug that raises the blood sugar, the best thing is for that specialist to coordinate with me and plan around the effects of that 

medication on the blood sugar, so that is similar to the case of 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. Occasionally, the specialist will ask 

the patient to let me know about this, putting the burden on the 

patient to coordinate the care. 

So I think we know that most of these individuals are hardworking, 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 that need to go on when patients are not 

there, the conversations that the specialists need to have together 

that complement having care coordinators and primary care providers as well. 

Senator ISAKSON. Well, your testimony affirms what the chairman and I have been talking about, and that is that you can improve quality and lower the cost of improving the quality at the 

same time by coordinating care for people with multiple chronic illnesses. 

Dr. BORNSTEIN. Yes, sir. 

Senator ISAKSON. On Alzheimer’s, my mother passed away from 

Alzheimer’s, and I was her caregiver for the first 2 years after my 

father’s death, and one of the things I remember that 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. 

Do you experience that, Mrs. Lehmann? 

Mrs. LEHMANN. Ken is still early-stage, but I definitely know 

that that is something that is very common with persons who have 

Alzheimer’s. It can be very difficult, and it can result in behaviors 

that we do not see on a day-to-day basis necessarily. 

20 

Senator ISAKSON. A care coordinator can help avoid the number 

of visits you have to make to individual physicians, which aggravates Alzheimer’s tremendously. 

I remember from my mother’s situation that she would go from 

a very docile individual to a very agitated individual because she 

was outside the surroundings that she was still familiar with when 

she was in my home. 

Mrs. LEHMANN. Exactly, yes. 

Senator ISAKSON. Mr. Chairman, the testimony by both Mrs. 

Lehmann and Dr. Bornstein certifies what you have said all along, 

and that is, if we can do a better job of incentivizing coordination, 

the best by-product is better care, but it also is less cost, and I 

think the testimony we have heard today verifies both of those 

things. 

I want to thank our witnesses for being here today. And welcome 

to Georgia, Ms. Dempsey. We are glad to have you here. I have a 

house about two counties over from you, in Rabun County. It is 

God’s country, and we are glad to have you there. 

Ms. DEMPSEY. My mother calls it God’s country too. Thank you. 

I appreciate that. 

Senator ISAKSON. Thank you. Thank you, Mr. Chairman. 

The CHAIRMAN. I would just tell our guests that you often see 

Senators kind of engage in this bouquet-tossing 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—the Better Care, 

Lower Cost Act—that was Senator Isakson who, from the get-go, 

really saw that as the frame around which to build. 

So we very much thank Senator Isakson for his leadership. 

Senator Bennet is next. And I will tell you, Senator Bennet has 

been running 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? 

Senator BENNET. Thank you, Mr. Chairman. 

The nice thing I would like to say about my colleague is ‘‘thank 

you’’ to Senator Isakson for not using all your time. That never 

happens around this place. [Laughter.] They should build a statue 

to you. 

Senator ISAKSON. I am just coordinating better. [Laughter.] 

Senator BENNET. Mr. Chairman, thanks. 

And thank you all for the testimony. It is very, very consistent 

with what I have heard from patients and others in Colorado. I am 

delighted that this important topic is before us today. 

Dr. Bornstein, I have, I guess, a couple of questions for you. Senator Grassley and I, as well as others on this committee, have been 

focusing recently on how to improve better care coordination for 

children with chronic conditions who are often overlooked and suffer tremendously as a result of that. 

I am sure you encounter this at your hospital, children with 

medically complex conditions. I wonder if you could talk a little bit 

about the challenges that they face and the improvements that you 

have put in place to deal with our kids. 

Dr. BORNSTEIN. Well, care of children at Emory is a separate endeavor, but I know that the same principles apply. Whether you 

21 

are a kid or an adult, when you have multiple medical conditions— 

are on numerous medications, seeing various medical specialists— 

coordination is not going to 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 has been lots of hope 

placed on information technology, and I think, given the complexity 

of the care we now render, information technology is absolutely 

crucial. It is necessary, but not sufficient. By itself, it will not solve 

these problems. 

Senator BENNET. Our sense is, even beyond just the institution 

of a hospital, if we could figure out how to create a set of conditions 

where the children’s hospitals across this country were able to 

work closely—— 

Dr. BORNSTEIN. I think that is true for adult care as well. 

Senator BENNET. Yes. 

Dr. BORNSTEIN. While we have our own integrated medical 

record—and that accomplishes quite a bit—as soon as they see a 

provider outside of our network, most of that information is invisible to us. 

Senator BENNET. You had mentioned in the discussion with Senator Isakson the problematic results that we face because we are 

enslaved to this fee-for-service system. I wonder if you could talk 

a little bit about other ways in which the Federal Government and 

private insurers create incentives that are not only not helpful to 

you, but drag you in a completely different direction from where 

you would like to go. 

I realize that is a big question, but since you are here and we 

have the folks who are, in theory, going to be making some of these 

decisions, think big, do not think small. If you were in the Senate, 

what are the handful of things you would do to make your life less 

of a misery? 

Dr. BORNSTEIN. Well, let me actually try to address that from 

two altitudes. It is a big question. 

Senator BENNET. I am not implying that your life is a misery, 

but to the extent that we cause these problems—— [Laughter.] 

Dr. BORNSTEIN. No, no. Well, let me say at the outset, I think 

the fact that we are having these conversations is really important, 

and I have great hope for the future and 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 barriers and improve the structures, I think we can deliver on that promise. 

At the granular level, one big concern I have relates to how quality measures are used. So, with every quality measure and with 

every implementation, there are always unintended consequences. 

That is just the nature of the universe, more or less. But I think 

what is particularly important when we think about these quality 

measures is, what are the unintended consequences and how can 

we continually improve them? 

So, for example, when Ms. DeMars was talking about physician 

profiling, which I support, we need to make sure that severity adjustment is built into that. So, if I am an endocrinologist at Emory 

taking care of the most complex patient with diabetes, whose measVerDate Mar 15 2010 20:05 May 20, 2015 Jkt 000000 PO 00000 Frm 00025 Fmt 6633 Sfmt 6633 R:\DOCS\94614.000 TIMD
22 

ures of glucose control may not be as good as some patients with 

less complex diabetes, how do we account for that, because, if we 

do not, 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 for some 

thoughts about how we change all this, again, I think the 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 that care can be 

delivered when the 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 am going to go out of business and, obviously, no margin, no mission. 

I also think there is a way to think about how we develop quality 

measures that reflect coordination of care. And this may get me in 

trouble with some of my colleagues, but it is a concept I have kind 

of thought about that, in a way, is joint and several liability. 

So, if a patient has a group of medical problems, my thought is 

that each of the providers taking care of that patient ought to be 

responsible for all of the measures of quality that patient needs. 

So, if they are seeing me for diabetes and an 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 has an impact on 

the whole patient. 

The CHAIRMAN. Thank you, Senator Bennet. And thank you for 

all your efforts on this over the years. I look forward to working 

with you. 

Senator Warner is another committee member with a longstanding interest in Alzheimer’s and chronic disease. Let us recognize him. 

Senator WARNER. Thank you, Mr. Chairman. Thank you for holding this hearing. I know it is just the beginning of a series of hearings on this subject. 

I know you raised the issue after hearing Mrs. Lehmann talk, 

and I think probably all of us have a personal story. My mom had 

Alzheimer’s for 11 years, 9 of which she did not speak. My father 

was the primary caregiver, along with my sister, a journey that 

was much harder than anything else I have ever done, and I have 

enormous respect for both of them for what they did. 

That has driven me, from my tenure as Governor and now as 

Senator—and we keep giving shout-outs to Johnny Isakson, but 

Johnny Isakson and I have taken another piece of this journey. I 

know Senator Bennet talked about children. You and Senator 

Isakson have talked about chronic disease. Senator Isakson and I 

have talked about and introduced legislation focused on advanced 

illness and that component of life’s journey. 

And where I want to start, I think, with Mrs. Lehmann, Dr. 

Bornstein, and anyone else, is, I think Dr. Bornstein just raised 

some interesting things about joint and several liability, which is 

23 

an interesting concept, an interesting idea. I am sure that some of 

your colleagues’ heads exploded when you just said that. 

But prior to that kind of tail-end responsibility, one of the things 

at the front end is how you set up a care plan. I would like any 

of you to address this notion of, first of all, how we can do a better 

job of setting up these care plans to make sure that all of the not 

only medical providers, but other stakeholders in the individual’s 

life, particularly as we look at advanced illnesses, are engaged, 

whether that is social workers, hospice, or others, number one. 

Then number two, if you could comment on what we from the 

legislative side, kind of the mirror image, if I am more at the other 

end of life as Senator Bennet spoke of, what we in Congress can 

do to advance that goal of having these care plans carry weight. 

One of the things that Senator Isakson looked at and I looked 

at is just having these kind of advanced directives or other tools 

be recognized across State lines. We heard from our first witness, 

in her movement from South Carolina to Georgia, the advanced directive she had would not be honored in many instances across 

those lines. 

Mrs. Lehmann, do you want to start—and then other members 

of the panel—on care plans, both what we can do from kind of the 

stakeholder standpoint and then from the Congress standpoint? 

Mrs. LEHMANN. I have to say that this is a new concept for me. 

I have been, as I mentioned, the operations manager. I have been 

the care planner, and I have not gone as far as to make a wish list 

for what could be, because I am dealing with the day-to-day—— 

Senator WARNER. Right. You are still living it. 

Mrs. LEHMANN. I am indeed living it. But I think it would be so 

very helpful just to even have someone to coordinate with. I would 

not mind making the calls if someone would tell me where I should 

call, whom I should call. 

It is 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. 

Senator WARNER. Mr. Chairman, one thing I might mention that 

we started a decade ago, before I was even Governor in Virginia— 

based upon my own family experience—was, we set up something 

called Seniornavigator.com that answered those kind of questions, 

but also provided those kind of resources drilled down to zip code 

level, because so many caregivers or others just do not know where 

to turn. But that is one of the tools that could be put in the toolkit. 

Dr. Bornstein, do you want to address this? 

Dr. BORNSTEIN. Yes, sir. Well, I think you put your finger on 

some very important opportunities. 

So, from the standpoint of care plans, I think what we are making good progress on is care plans for diseases. So patients with 

multiple diseases will have a diabetes care plan, and a coronary artery disease care plan, and so forth. 

What we need is a care plan for all of those diseases, an integrated care plan designed for that individual patient that takes 

into account all of their illnesses. 

24 

Again, I think that will not happen without a payment structure 

that does not solely reward visits. It requires one that will reward 

those kind of efforts for producing better care. 

Senator WARNER. So you do not think it is a rational system 

where we compensate a medical professional treating someone with 

advanced illness for repeated tests, but refuse to compensate that 

same medical professional for sitting down and actually talking 

through with the family this stage of life. 

Dr. BORNSTEIN. Exactly. In fact, we have a very successful palliative care program at Emory, but what they tell us is that the conversations they need to have with patients and families take a long 

time, and, even under the current palliative care reimbursement 

codes, they are not able to sustain themselves. 

I personally think that there is a great need for more of these 

conversations to occur outside of health care facilities. You are 

probably familiar with Ellen Goodman’s Conversation Project. 

These are hard conversations. Even very sophisticated families will 

often do everything they can to avoid the conversations. 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. It is kind of a 

public health opportunity. 

Senator WARNER. And one thing I just would mention there. I 

know my time has expired. But oftentimes the doc may actually be 

as uncomfortable having the conversation as the family. 

Dr. BORNSTEIN. Absolutely. Absolutely. And the different specialists may be on different pages, and they need to have those conversations together as well. 

Senator WARNER. Thank you, Mr. Chairman. 

The CHAIRMAN. Thank you, Senator Warner. And our guests 

should know that, in addition to always raising these important 

issues, what Senator Warner has described dovetails very well into 

a very large demonstration project that is going to be beginning 

shortly and will run through CMS, called Medicare Care Choices. 

And, for the first time, this would allow patients to have an option 

between curative care and hospice care, which in the past has not 

been permitted. 

All the applications are in, and they are making the decisions. 

So this is about to be rolled out shortly, and I think it dovetails 

well with the important work Senator Warner is talking about. 

Senator Casey? 

Senator CASEY. Mr. Chairman, thank you very much for the 

hearing, and I want to thank you as well for sharing your own personal story about your mom. 

I left here a couple of moments ago and had a meeting about a 

whole set of other topics, foreign policy, and the person in the 

meeting, when I told him where I was going back to, he said, ‘‘I 

have a 94-year-old mother, and she is the equivalent of a concert 

pianist. And she is 94 and she has 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. 

25 

* Patient-Centered Outcomes Research Institute. 

I will direct my questions not to Ms. Dempsey and Mrs. Lehmann—and I do not do that for any other reason than that I have 

limited time—but I am especially grateful you are here to provide 

your own personal testimony. It is not easy to talk about your own 

lives in a public setting like this, especially something as challenging as this. So we are grateful for your presence and your testimony and the information we derive from it. 

I will start with Ms. DeMars. I wanted to talk about the question 

of MS, in particular. We know—and this is known to medical professionals—that MS is a serious, 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 is why I ask you the question. Because, even though 

it is complicated and difficult to deal with, we know that proper 

management can yield great results in reducing symptoms, slowing 

disease progression, and improving quality of life. 

So I guess the basic question I have for you is, when you look 

at what plans and employers are doing, how do employers select 

plans that ensure that patients with MS and other chronic conditions have access to the full range of available therapies? Could you 

speak to that? 

Ms. DEMARS. Sure. Thank you, Senator Casey. 

Senator CASEY. And I should say, at a reasonable cost. 

Ms. DEMARS. Well, that is a tricky part too. 

Our members are self-funded employers. So I will speak from 

that perspective. We understand that the health of our workforce 

is directly related to our business results, and so we share an interest in ensuring that our employees and their 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 levels, to ensure optimal health. Value-based benefit design is the nomenclature that is 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 employer’s design of their benefit 

plans to ensure adequate coverage for that condition. 

Senator CASEY. Is there anything you would hope we would do 

to either further incentivize or facilitate this kind of approach to 

MS, or do you think we are on the right track? 

Ms. DEMARS. Well, maybe I could just speak more broadly than 

specifically to MS. I think the PCORI* research has great promise 

to help us understand the relative value of tests and treatments 

that we can begin to factor into how we provide coverage. 

Senator CASEY. Thank you very much. 

I want to turn to Dr. Bornstein and the question of the socioeconomic status of beneficiaries, which, like everything, has an acronym: SES. There has been a lot of discussion and a lot of recent 

research on how the socioeconomic 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 priVerDate Mar 15 2010 20:05 May 20, 2015 Jkt 000000 PO 00000 Frm 00029 Fmt 6633 Sfmt 6633 R:\DOCS\94614.000 TIMD
26 

ority for us and a major topic. Sometimes what is less often discussed is something I am sure you and others have seen as kind 

of a growing body of research and evidence that racial and ethnic 

minorities and people with lower average incomes often receive 

lower quality of care than folks in other income or racial categories. 

Can you speak to that in the context of—I guess the basic question is, do you think there is a utility and a need to include these 

kinds of what might be called socioeconomic status factors when 

determining health care policy? I know it is kind of a broad question. 

Dr. BORNSTEIN. Yes, sir. I think absolutely a critical element of 

improving health is addressing the socioeconomic disparities. Right 

now, there is debate going on as we speak around risk adjustment 

for hospital readmission rates related to socioeconomic status, and 

I think that kind of illustrates the case very well. 

From a hospital standpoint, the hospitals that serve the more 

disadvantaged populations typically have higher readmission rates. 

As you know, much of what happens—— 

Senator CASEY. And they can be penalized because their rates go 

up, even though they have a more difficult challenge. 

Dr. BORNSTEIN. Absolutely. So much of what determines the likelihood of readmission occurs after the patient leaves the hospital. 

And so their home situation and their access to care and their support structures have a significant impact on that. To penalize those 

hospitals for things that are very much out of their control would 

have the unintended consequence of a further deterioration of their 

economic viability in terms of providing that care. 

By the same token, that needs not to fall off the country’s radar 

screen, because this is a problem, and the fact that the disadvantaged have higher readmission rates and worse outcomes does need 

to be addressed. But the question is, does that need to be addressed by the individual hospital which they are just being discharged from or some other element of society? So I think it is a 

critical consideration, and we need to never forget about it. 

Senator CASEY. Thank you very much. 

The CHAIRMAN. Thank you, Senator Casey. And I know you have 

talked to me about these chronic care issues, particularly in the 

context of kids, a number of times over the years, and I very much 

appreciate your advocacy. 

We are joined by Pennsylvania’s other Senator, Senator Toomey. 

Senator TOOMEY. Thank you very much, Mr. Chairman. 

I want to thank all the witnesses for being here today. 

I direct my question to Mrs. Lehmann. 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 team or whether that is an individual. Your husband sees multiple physicians. Who should have that responsibility? Do you have any thoughts about how the focus of the care 

could be different and could be helpful to the patient and the caregiver? 

27 

Mrs. LEHMANN. I think among Ken’s doctors, our neurologist is 

our most important person. Alzheimer’s is our primary concern. It 

is fortunate that his atrial flutter is somewhat under control 

through medication. So he is able to thrive with it. 

When someone asks, who is your primary doctor, I always say 

the neurologist, because 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 a degree. 

I think 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. So he is a very 

important part of a program that Ken is in, entitled Living Well. 

It is run by the Alzheimer’s Association, by the Wilder Foundation 

of St. Paul, MN, and by the Jewish Community Center, which has 

opened its doors to welcome us on their campus every week. 

With that Living Well program is associated a caregiver cafe. So 

Ken and I go together, and this is very, very important. It is not 

a day program where I drop him off and I do my own thing, which 

once in a while happens, because they insist that we have some 

free time, and 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 they learn 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. Rosenbloom has been very much a part of that. In fact, 

he comes to the Living Well program. He is a part of it as far as 

speaking to the caregivers, speaking to the persons with the disease. Also, the neuropsychologist from our center comes to answer 

questions about the disease for the caregivers, as well as for the 

persons with the disease. So that is an aspect which is very, very 

important in dealing with our daily living. 

For me, dealing with finances—and the system—is another issue 

where I will need help further down the line. That is another triangle or another piece of the pie that I need assistance in, but I 

am so appreciative of the care plan that we have with our neurologist. 

Senator TOOMEY. And does the neurologist sort of take responsibility for anticipating that, 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? So is he the point person for 

making sure that they are keeping up with what needs to be monitored? 

Mrs. LEHMANN. He is. He is. In fact, at our last appointment, he 

addressed that very issue, just knowing that the disease is progressive and we will be looking at different living situations and so 

forth. So he has been the point person for that, for which I am very 

grateful. 

Senator TOOMEY. Well, thank you very much. Thank you for coming and testifying today. We appreciate it. 

Mrs. LEHMANN. Thank you. 

Senator TOOMEY. Thank you, Mr. Chairman. 

28 

The CHAIRMAN. Thank you, Senator Toomey. We have talked 

about this issue, you and I, a number of times, and I look forward 

to working very closely with you. 

Let me go to the next question. We will involve you in this, Ms. 

DeMars, as one of the payers and employers. We have talked a lot 

about Medicare, for example, which I 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 are going to be healthier than they 

would have been otherwise? 

Ms. DEMARS. 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 are living 

prior to Medicare age. 

So I am thinking about an answer to your question—how could 

Congress help promote better health pre-Medicare for people with 

chronic conditions? For employers, we focus on early detection. As 

I said earlier, we have a vested interest in the health of our workforce, and so we focus on things like health risk appraisals with biometric screenings, which oftentimes detect or identify undetected—— 

The CHAIRMAN. You all offer those biometric screenings? 

Ms. DEMARS. 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 provides individual information, confidential information, to each of the participants and, unfortunately or fortunately, oftentimes 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 diabetes, a measure that we are using. So that addresses early detection 

and only begins to address the need to realign financial incentives. 

Then there is the complicated question of how we can help people 

live healthier lifestyles. Employers work on that because they have 

people there during the workday, but it is a much bigger issue than 

one that employers can tackle alone. 

The CHAIRMAN. I very much would like to follow up with you and 

am glad you are working 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 patients face when interacting with the health 

care system are present both in Medicare and the non-Medicare 

population, and to the extent that we can find a way, as I describe 

it, to age into Medicare having played offense to the greatest extent 

possible—as you talked about with biometric screenings and the 

treatment kind of approaches—I think that makes a lot of sense. 

29 

So we are very interested in working with all of you, the employers. 

Ms. DEMARS. That is excellent. I think there are great opportunities for alignment between public-sector and commercial employers 

that share the same interests in promoting health and optimal 

health care at an affordable cost. 

The CHAIRMAN. Let us turn to another topic that is really not for 

the faint-hearted, but one we have to figure out how to make additional progress on, 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 is electronic medical records, and ideally this would be 

good for patients because patients would have this information. It 

would be good for providers because it is going to help them do a 

better job of coordinating care. 

Also, Ms. DeMars made a point that I am interested in about the 

Medicare claims data, and how you use that. So why do we not just 

see if we can bring the four of you into this discussion about the 

health information technology. 

Let us 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 working out? Is it a useful 

tool? Is it being shared? Is it hard to figure out whom to go to for 

what? Tell me your thoughts on that, Ms. Dempsey. 

Ms. DEMPSEY. I do not know that it is hard to figure out whom 

to go to. Once you call the doctor’s office and explain to them what 

you want, you may wait on hold while they try to figure it out, 

whom they need to get you to and in what hands, but, no, for me, 

I have not found that that is a problem or a difficulty. 

The CHAIRMAN. You are able to get your hands on the information you need. 

Ms. DEMPSEY. Not right at the time, but through a process, yes. 

The CHAIRMAN. And it is fairly useful? 

Ms. DEMPSEY. Yes. Sometimes I do not get exactly what I need 

that would be useful, but I do eventually. 

The CHAIRMAN. And you, Mrs. Lehmann, tell me about your experience. I call it the treasure trove of data. Sometimes you almost 

wonder if there is too much. 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, Ms. 

Dempsey, and others. 

Mrs. LEHMANN. 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 3-hole punch out and put the new paperwork 

in the binder. But that is the only medical report that we receive. 

Ken does not receive anything from the cardiologist, and, if I do not 

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 am always there, but I also can review what has transpired, and any referral that he may give us, he puts down the 

30 

phone number. So everything that I need is right on those sheets. 

So that is wonderful. 

The CHAIRMAN. So you are doing well with the neurologist. And 

on the cardiologist front and the internist front, things are coming 

up a little short. 

Mrs. LEHMANN. Exactly. 

The CHAIRMAN. Then let us get our providers and our payers into 

this whole question of health IT. 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 are in terms of how we 

tackle this, and even apropos of Mrs. Lehmann and Ms. Dempsey? 

Ms. Dempsey said that she thought it worked okay but that sometimes it was hard to kind of pry it out, and Mrs. Lehmann had 

some areas where it worked and some where it did not work. 

What do you think the next steps are in terms of health IT as 

it relates to chronic conditions? 

Dr. BORNSTEIN. As you say, it is not for the faint of heart, and 

it is a big topic, but I think, exactly as you heard from Ms. 

Dempsey and Mrs. Lehmann, America is in a state of transition, 

and providers are at different points in that transition. 

At Emory, we are all connected. We have a patient portal, and 

so patients can see their lab results. We can communicate with patients about those lab results, and that is a beginning. 

Our goal is for the whole record to be available to patients, but 

it has to be done carefully, because sometimes not everybody wants 

to read everything that is in there, and that involves some additional research that needs to be 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 are 

doing, 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 is a major barrier. Meaningful use will help 

move people toward sharing of information, but it is a slow process, 

and it has had its own unintended consequences. 

So I think more than anything, we need more research to understand how best to use this health information technology. Like everything else we have been talking about, there are unintended 

consequences to all of this. We need to learn how to be smart about 

it, but I think it is an important tool. 

The CHAIRMAN. Thank you. I am struck that you characterized 

it as a patient portal. Mrs. Lehmann described it as her binder and 

the like. Obviously, we are going to have to try to figure out ways 

to make this tool user-friendly for both the patient and the providers. 

I continue to hear from providers who describe this like a water 

torture kind of routine where they are up until 2 a.m. in the morning trying to fill out various and sundry kinds of records, and you 

just have this picture in your head. What this is all about is, we 

have 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 

31 

give the kind of quality health care services that are so important 

to our patients and their caregivers. 

So we are going to ask you some more questions, Dr. Bornstein, 

on this. 

I was interested by what you said, 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 available. 

But what you are interested in doing is also extremely important, because you want to really get it down to the patient level, 

and we are 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? 

Ms. DEMARS. Senator Wyden, we are one of the founding members of the Wisconsin Health Information Organization, which is an 

all-payer claims database to which payers across Wisconsin and 

self-funded coalitions like The Alliance contribute data. 

We are fortunate in that it represents 70 percent of the care for 

Wisconsin patients. The big hole is Medicare data, and, as Dr. 

Bornstein commented earlier, the task of getting physician-specific 

information is tricky and sensitive and critically important, and the 

more data we have to work with, the better we will be able to do. 

In addition, we need clinical information in addition to claims 

data. We have made a significant investment as a country in 

health information technology and health information exchange, 

and 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 

measurements to take into consideration some of the things that 

Dr. Bornstein mentioned. 

The CHAIRMAN. You all have been a terrific panel and have given 

us a whole host of valuable ideas. I have been scribbling away, as 

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 valuable, 

and you could see Senators on both sides of the aisle—nobody 

talked about what is the Democratic approach to deal with chronic 

disease, what is the Republican approach to deal with chronic disease. You had Senators on both sides of the aisle saying, let us talk 

about what is practical, what is fair, how is it going to be userfriendly for patients. 

I will tell you, my own judgment is that chronic disease has really gotten short shrift in the debate with respect to health care in 

America. It has gotten short shrift in the big debates. 

I do not think it happened deliberately. I see absolutely no evidence that a Senator got up in the morning and said, I want to be 

rotten to those with chronic disease or, I do not want to pay any 

attention to this. I think what happens in the Congress is, you get 

up and there are a whole host of issues on your plate and off you 

go for 12 or 14 hours, try to tackle them, and a lot gets lost. 

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 

32 

chronic disease gets short shrift. And you saw determination 

among Senators to look at both the under-65 population and the 

over-65 population. I came to this initially in terms of the over-65 

population for a variety of reasons, for instance, 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 lower their cholesterol and quit smoking and the like. 

So that is 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 and the need to try 

to put in place what amounts to a seamless web of services so that, 

in effect, as I touched on with you, Ms. DeMars, when an American 

ages into Medicare, you will have already begun the heavy lifting. 

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 have worked primarily with patients over these years, since before I got elected to Congress, I am 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 have 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, CA, where they did a great 

job. I am a Senator and this is the area I specialize in and, my 

goodness, so many patients do not have what your husband has. 

So thank goodness for you. 

Dr. Bornstein, you have been with us—Senator Isakson and I— 

since this journey began, and we very much appreciate the good 

counsel you have given us. 

To you, Ms. DeMars, we had not met before today, but you surely 

account well for the employers. I know Senator Hatch urged us to 

have you on the panel, and I am surely 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, officially over, and you all have been present to get this 

launch off in the right direction. 

So I thank you. God bless. The hearing is adjourned. 

[Whereupon, at 12 p.m., the hearing was concluded.] 

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A P P E N D I X 

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