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91–168 PDF 2016

S. HRG. 113–798 

THE NATIONAL PLAN TO ADDRESS ALZHEIMER’S 

DISEASE: ARE WE ON TRACK TO 2025? 

HEARING 

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE 

ONE HUNDRED THIRTEENTH CONGRESS 

FIRST SESSION 

WASHINGTON, DC 

WEDNESDAY, APRIL 24, 2013 

Serial No. 113–4 

Printed for the use of the Special Committee on Aging 

( 

Available via the World Wide Web: http://www.fdsys.gov 

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SPECIAL COMMITTEE ON AGING 

BILL NELSON, Florida, Chairman 

RON WYDEN, Oregon 

ROBERT P. CASEY JR, Pennsylvania 

CLAIRE MCCASKILL, Missouri 

SHELDON WHITEHOUSE, Rhode Island 

KIRSTEN E. GILLIBRAND, New York 

JOE MANCHIN III, West Virginia 

RICHARD BLUMENTHAL, Connecticut 

TAMMY BALDWIN, Wisconsin 

JOE DONNELLY Indiana 

ELIZABETH WARREN, Massachusetts 

SUSAN M. COLLINS, Maine 

BOB CORKER, Tennessee 

ORRIN HATCH, Utah 

MARK KIRK, Illinois 

DEAN HELLER, Nevada 

JEFF FLAKE, Arizona 

KELLY AYOTTE, New Hampshire 

TIM SCOTT, South Carolina 

TED CRUZ, Texas 

KIM LIPSKY, Majority Staff Director 

PRISCILLA HANLEY, Minority Staff Director 

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CONTENTS 

Page 

Opening Statement of Chairman Bill Nelson ........................................................ 1 

Prepared Statement ......................................................................................... 58 

Opening Statement of Ranking Member Susan M. Collins ................................. 1 

Prepared Statement ......................................................................................... 60 

PANEL OF WITNESSES 

Ashley Campbell, Testifying on Behalf of Glen Campbell and Family ............... 3 

Don Moulds, Ph.D., Acting Assistant Secretary of Planning and Evaluation, 

United States Department of Health and Human Services ............................. 11 

Ronald Petersen, MD, Ph.D., Cadieux Director of the Mayo Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging ............................. 23 

Michael D. Hurd, Ph.D., Director, RAND Center for the Study of Aging ........... 34 

APPENDIX 

PREPARED WITNESS STATEMENTS AND QUESTIONS FOR THE RECORD

Ashley Campbell, Testifying on Behalf of Glen Campbell and Family ............... 6 

Don Moulds, Ph.D., Acting Assistant Secretary of Planning and Evaluation, 

United States Department of Health and Human Services ............................. 13 

Ronald Petersen, MD, Ph.D., Cadieux Director of the Mayo Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging ............................. 25 

Questions submitted for Dr. Petersen ............................................................ 62 

Michael D. Hurd, Ph.D., Director, RAND Center for the Study of Aging ........... 36 

Questions submitted for Dr. Hurd .................................................................. 64 

ADDITIONAL STATEMENTS FOR THE RECORD 

Alzheimer’s Association ........................................................................................... 69 

Alzheimer’s Foundation of America ....................................................................... 74 

Jeffrey L. Cummings, M.D., Sc.D., Director, Cleveland Clinic Lou Ruvo Center for Brain Health, Camille and Larry Ruvo Chair for Brain Health, 

Cleveland, OH ...................................................................................................... 82 

George Vradenburg, Chairman, USAgainstAlzheimer’s ....................................... 84 

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THE NATIONAL PLAN TO ADDRESS 

ALZHEIMER’S DISEASE: ARE WE ON TRACK 

TO 2025? 

WEDNESDAY, APRIL 24, 2013 

U.S. SENATE, 

SPECIAL COMMITTEE ON AGING, 

Washington, DC. 

The Committee met, pursuant to notice, at 2:11 p.m., in Room 

106, Dirksen Senate Office Building, Hon. Bill Nelson, Chairman 

of the Committee, presiding. 

Present: Senators Nelson, Whitehouse, Manchin, Blumenthal, 

Donnelly, Collins, and Ayotte. 

OPENING STATEMENT OF SENATOR BILL NELSON, CHAIRMAN 

The CHAIRMAN. Good afternoon. We are going to do things a little 

bit different here today. Ms. Campbell, if you would come on up, 

after the opening statements, in order to accommodate the Campbells’ schedule, we will have them testify first and answer questions so that they can get on to the airport. I certainly hope you 

are not experiencing a lot of the delays at the airport like everybody else is. 

I want to really thank everybody for being here and this show 

of support and the enthusiasm that has been generated and for all 

of the purple that is displayed today, we want you to know how 

much we appreciate it. 

I want to turn to our Ranking Member, Senator Collins, for her 

to make the opening statement. 

OPENING STATEMENT OF SENATOR SUSAN M. COLLINS 

Senator COLLINS. Mr. Chairman, first of all, I cannot tell you 

how grateful I am that you have called this very important hearing 

to examine the enormous toll that Alzheimer’s disease is taking on 

our nation and to assess the progress since the enactment of the 

National Alzheimer’s Project Act in 2011. Along with former Senator Evan Bayh, I am proud to have been the sponsor of that law, 

known as NAPA. 

Alzheimer’s is a terrible disease that exacts a tremendous personal and economic toll on both the individual and the family. As 

someone whose family has experienced the pain of Alzheimer’s time 

and time again, I know there is no more helpless feeling than to 

watch the progression of this devastating disease. It is an agonizing experience to look into the eyes of a loved one and receive only 

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tional and physical damage inflicted on many family caregivers, exhausted by an endless series of 36-hour days. 

And my family is by no means alone. An estimated 5.2 million 

Americans have Alzheimer’s, more than double the number in 

1980. Based on the current trajectory, as many as 16 million Americans over the age of 65 will have Alzheimer’s disease by the year 

2050. 

Moreover, in addition to the human suffering it causes, Alzheimer’s costs the United States more than $200 billion a year, including $142 billion in costs to Medicare and Medicaid. This price 

tag will increase exponentially as the baby boom generation ages. 

If nothing is done to stop or slow this disease, Alzheimer’s will cost 

the United States an astonishing $20 trillion over the next 40 

years, according to the Alzheimer’s Association. 

It is estimated that nearly one in two of the baby boomers reaching 85 will develop Alzheimer’s. As a consequence, chances are that 

the members of the baby boom generation will either be spending 

their/our golden years with Alzheimer’s or caring for someone dear 

to them who has it. In many ways, Alzheimer’s has become the defining disease of my generation. 

A strong and sustained research effort is our best tool to slow the 

progression and ultimately prevent the onset of this disease. If we 

fail to change the current trajectory of Alzheimer’s disease, our 

country will face not only a mounting national health care crisis, 

but an economic one, as well. 

Despite all the alarming statistics, until now, there has been no 

national strategy to defeat Alzheimer’s and our efforts to combat 

the disease have lacked coordination and focus, and that is why the 

National Alzheimer’s Project Act, or NAPA, creates a strategic National Plan for combating Alzheimer’s. This National Plan, which 

will be updated annually, will help us focus our efforts and accelerate our progress toward better treatments, a means of prevention, and ultimately even a cure. 

The annual review process required by the law is intended to 

help us answer an important straightforward question: Have we 

made satisfactory progress this year in the fight against Alzheimer’s? And that is why we are here today and why I am so 

grateful to our Chairman. 

The primary goal of this hearing is to assess the progress that 

we are making. The goal of the National Plan to Address Alzheimer’s Disease, the plan which was released last May, was to, 

quote, ‘‘prevent and effectively treat Alzheimer’s disease by the 

year 2025.’’ It is my understanding that the next version of the National Plan will be released next month. So this is the perfect time 

for a progress check. I personally am convinced that we need to 

more than double the amount of money that we are investing in 

Alzheimer’s research in order to achieve significant progress. 

I want to thank all of our witnesses who are here today, but particularly Glen Campbell and his family. It was wonderful to hear 

him play many of my favorite songs. His guitar skills are second 

to none and he still has that wonderful voice. And it was wonderful 

to be honored to meet him, his wife, and daughter. And I am also 

grateful to the other experts who have joined us today. Issues reDeShaun on LAP51NQ082 with DISTILLER

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lated to Alzheimer’s clearly are near and dear to my heart and I 

look forward to hearing from our witnesses. 

Thank you, Mr. Chairman. 

The CHAIRMAN. Well, and Senator Collins, thank you for all your 

hard work in this area. 

It is shocking that, today, one in three seniors will die with Alzheimer’s. And as the baby boomers age, this fact is going to confront us all the more. You take a State like mine, Florida, where 

we have a higher percentage of the population is elderly, it all the 

more will be accentuated. 

And we have got places all over the country that are working on 

this disease. Senator Collins and I want to focus in on this today, 

and we want to give some additional heft and lift to what all of you 

out there are doing. 

Now, today, there are over 900 of you fanning out across Capitol 

Hill and we are very grateful for your tireless efforts on behalf of 

this issue. And for the Alzheimer’s Association, including former 

Congressman Dennis Moore, we are grateful for all of you being 

here today. 

Now, I said we are going to do this differently to accommodate 

the Campbell family so they can get to the airport. So, first, we are 

going to hear from Ms. Ashley Campbell, the daughter of Glen and 

Kim. She is a recent graduate of Pepperdine. Her father is a fivetime Grammy winning country singer. During his 50 years of show 

business, he has recorded some of the most beloved songs of his 

generation: ‘‘Gentle on My Mind,’’ ‘‘Rhinestone Cowboy,’’ more than 

70 albums. And he has won numerous accolades for his music: The 

Academy of Country Music’s Entertainer of the Year Award, three 

Grammy Hall of Fame Awards, and a Grammy Lifetime Achievement Award. He was also inducted into the Country Music Hall of 

Fame in 2005. 

A couple of years ago, Mr. Campbell was diagnosed with Alzheimer’s. Mr. Campbell, with his wife, Kim, who is with us, and 

his children, Ashley, Cal, and Shannon, have decided to face his illness head on. And so we want to hear from Ms. Ashley Campbell 

first. 

STATEMENT OF ASHLEY CAMPBELL, ON BEHALF OF GLEN 

CAMPBELL AND FAMILY 

Ms. CAMPBELL. Thank you, Chairman Nelson and Senator Collins and members of the committee for the opportunity to testify 

today, and thank you for holding this hearing on Alzheimer’s disease and the National Plan. 

Before my dad was diagnosed, I did not realize what a serious 

disease Alzheimer’s is or how many people were affected by it. Over 

the past few years, here is some of what I have learned. 

Over five million Americans are living with Alzheimer’s today. As 

many as 16 million will have Alzheimer’s disease by 2050. This 

year, our country will spend $203 billion in direct costs for those 

with Alzheimer’s, including $142 billion in government costs to 

Medicare and Medicaid. Those costs are expected to exceed $1.2 

trillion by 2050. In fact, a recent study in the New England Journal of Medicine confirmed that Alzheimer’s is the most expensive 

disease in America. 

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Because the costs are set to skyrocket and so much of this is paid 

by government, overcoming Alzheimer’s is the key to fixing the 

country’s growing fiscal challenges. For example, if a new medicine 

was developed to delay the onset of the disease by just five years, 

we could cut government Alzheimer’s costs nearly in half by 2050, 

if only we fund the research needed to get there. 

What all of these numbers cannot tell you is the cost of the disease to the families. Since we announced that my dad has Alzheimer’s, perfect strangers have been coming up to me and crying 

to tell me about Alzheimer’s in their family. In fact, there are a 

thousand advocates on Capitol Hill today, hundreds in this hearing 

room now, who have been touched by Alzheimer’s, and I have been 

honored to hear many of their stories, and today, I am honored to 

share my family’s story with you. 

In June of 2011, my dad announced that he had been diagnosed 

with Alzheimer’s disease. I was 24 years old at the time. I met a 

young man last night who was in sixth grade when he heard his 

father was diagnosed, and a little girl who could not have been 

more than 12 years old whose father just passed away from Alzheimer’s. Dad thought it was important for people to know that you 

can keep doing what you love and that life does not end right away 

when you get Alzheimer’s. It was also so important for my dad to 

take action and help spread the word about the need to find a cure 

for Alzheimer’s. 

Shortly after my dad’s announcement, my brothers and I joined 

my dad for the Glen Campbell Goodbye Tour. My mom was by my 

dad’s side, of course, and we were also joined by the filmmakers 

who are doing a documentary about my dad. For dad, music has 

been therapeutic, and being public about his diagnosis was really 

helpful, because he did not want people to get the wrong idea at 

concerts if something appeared to go wrong. 

While there were a few challenges on stage during some of the 

shows, we always smoothed things out quickly. It helped to have 

my brothers and me on stage with him, and it helped to have such 

amazing support from my dad’s fans. And it helped that my dad 

has been playing and touring for so long that the stage for him 

feels like home. That is where he is most comfortable, I think. 

One highlight of the Glen Campbell Goodbye Tour was playing 

at the Grammys last year and getting to meet Paul McCartney 

there. And another highlight was our visit to Capitol Hill last year. 

My family and I came to Washington, D.C., last May when the first 

National Alzheimer’s Plan had just been released. We spent a few 

days meeting with members of Congress to ask for funding for the 

plan. We also played a special performance for members of Congress during a briefing put on by the Alzheimer’s Association. I was 

so grateful to see Senators and Representatives singing along with 

dad and to know that they were fighting to end this terrible disease. 

Dad has been really committed to this fight, and we all have, and 

we are committed to doing more about it, which is why we are here 

today. 

Senators, there is something that my family and this whole community needs you to do. Congress passed a bill two years ago which 

resulted in the first ever National Alzheimer’s Plan. The plan is 

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strong and so is its goal to prevent and effectively treat Alzheimer’s 

by 2025. As our nation’s leaders, I respectfully ask that you support the implementation of the National Alzheimer’s Plan and that 

you fund the President’s budget request of an additional $100 million for Alzheimer’s this year. 

In my family, music was always a part of our home and we are 

still playing. We knew at the beginning that Alzheimer’s does not 

rob you of the things you love right away, but the disease will keep 

getting worse and there are not any medications today that can 

stop it. 

Alzheimer’s is a disease that robs people of their lives while they 

are still living it, and it robs families of the people they love while 

they are still standing right in front of their eyes. I think a person’s 

life is comprised of memories, and that is exactly what this disease 

takes away from you, like a memory of my dad taking me fishing 

in Flagstaff when I was a little girl, or playing banjo with my dad 

while he plays guitar. Now, when I play banjo with my dad, it is 

getting harder for him to follow along and it is getting harder for 

him to recall my name. It is hard to come to the realization that, 

someday, my dad might look at me and I will be absolutely nothing 

to him. 

We need to find a cure for this because we are not the only family affected. So much pain should not exist in the world. Let us 

work together to end Alzheimer’s. Thank you. 

[The prepared statement of Ms. Campbell follows:] 

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The CHAIRMAN. Thank you very much. 

[Applause.] 

Do any of the members, before we excuse the Campbell family, 

have any questions? Any additional comments? 

Senator COLLINS. I just want to thank Ashley for her very moving and compelling testimony. It is so important that we put a 

human face on this, and I admire the decision of your entire family 

to step forward out of the shadows and shine a spotlight on this 

devastating disease, so thank you so much for being here today. 

Ms. CAMPBELL. Thank you. 

Senator WHITEHOUSE. I just want to join my colleagues in thanking the Campbell family, thanking Ashley for her wonderful testimony, and thanking Mr. Campbell for the many years of pleasure 

that I got listening to him as I was growing up. 

The CHAIRMAN. Courage is an American characteristic that is 

embraced by the American people. You clearly have shown that 

courage, as have your mom and dad, and we want to thank you for 

sharing your story. This wretched disease has touched almost every 

one of us in this room one way or another, and you have stood tall 

to bring the focus all the more on this issue of monumental consequence. So we are deeply grateful. 

And I know you have to get to the airport, so at your pleasure, 

you all just excuse yourselves whenever you would like. 

Ms. CAMPBELL. Thank you. 

The CHAIRMAN. Next, we are going to hear from Dr. Don Moulds. 

He is the Acting Assistant Secretary of Planning and Evaluation at 

the Department of Health and Human Services, and in this capacity, Dr. Moulds is overseeing the development of the national strategy to end Alzheimer’s disease. He is also a member of the Federal 

Advisory Council on Alzheimer’s Research, Care, and Services. 

We also have Dr. Ronald Petersen. Dr. Petersen is the Director 

of the world-renowned Mayo Clinic’s Alzheimer’s Disease Research 

Center and the Mayo Clinic Study of Aging. He has authored over 

400 peer-reviewed articles on memory disorders, aging, and Alzheimer’s disease. Dr. Petersen’s most recent research focuses on the 

study of normal aging, mild cognitive impairment, dementia, and 

Alzheimer’s. 

And then we will hear from Dr. Michael Hurd. Dr. Hurd is the 

senior principal researcher at the RAND Corporation, where he directs the RAND Center for the Study of Aging. His research focuses on the economies of retirement as well as other topics related 

to aging and the elderly. Dr. Hurd recently wrote a New England 

Journal of Medicine Study on the economic cost of Alzheimer’s entitled, ‘‘Monetary Cost of Dementia in the United States.’’ 

Gentlemen, welcome. We will take you in the order in which I 

introduced you and then we will get into the questions after all 

three of you have testified. Your formal statement is entered into 

the record, and so we would ask you to summarize your comments. 

Dr. Moulds. 

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STATEMENT OF DONALD B. MOULDS, PH.D., ACTING ASSISTANT SECRETARY FOR PLANNING AND EVALUATION, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Mr. MOULDS. Mr. Chairman and members of the committee, my 

name is Don Moulds and I am the Acting Assistant Secretary for 

Planning and Evaluation in the Office of the Secretary of the Department of Health and Human Services. I am honored to come before you today to talk about the implementation of the National 

Alzheimer’s Project Act, or NAPA, and the National Plan to Address Alzheimer’s Disease. 

We have an historic opportunity to influence the way we address 

Alzheimer’s disease, its impact on those who have it and their families, and perhaps reduce the incidence and the devastation it 

causes in the future. President Obama and Secretary Sebelius have 

made it abundantly clear that we cannot wait to act on this urgent 

national priority. 

In my testimony, I refer to Alzheimer’s disease under this term. 

I include related dementias, consistent with the approach Congress 

used in the crafting of the law. 

As many as five million people in the United States have Alzheimer’s disease. The effects of Alzheimer’s can be devastating for 

both individuals with the disease and their families. As Dr. Hurd 

will testify, the annual cost of care for people with AD is estimated 

to be between $160 and $215 billion annually. There is no treatment for AD and eventually it is fatal. It is the fifth leading cause 

of death among people aged 65 and older. As we have made 

progress fighting other diseases and the population has aged, mortality from Alzheimer’s has risen. 

The National Alzheimer’s Project Act establishes an Advisory 

Council on Alzheimer’s Research, Care, and Services, which brings 

together some of the nation’s foremost experts on Alzheimer’s disease. Ron Petersen, the Chair of the Advisory Council, will speak 

about their work in just a few moments. 

Our work on the National Plan began in 2011 with the establishment of an Interagency Group on Alzheimer’s Disease and Related 

Dementias. The group included the Departments of Veterans Affairs and Defense, the National Science Foundation, and over a 

dozen HHS agencies. The Interagency Group inventoried Federal 

programs, including research, clinical care, and services and supports. It then identified areas of overlap, opportunities for collaboration, and gaps, forming the basis of the initial work for the National Plan. 

In early 2012, we shared a framework and drafted the National 

Plan to Address Alzheimer’s Disease with the Advisory Council and 

with the public. We incorporated the input received from the Advisory Council and thousands of stakeholders. We built off the President’s historic ‘‘We Can’t Wait’’ investments in Alzheimer’s and 

identified concrete steps to address the disease. The National Plan 

was released on May 15, 2012. As Secretary Sebelius said, it provides the cornerstone of an historic effort to fight Alzheimer’s. 

The National Plan addresses five ambitious goals. First, to prevent and effectively treat Alzheimer’s disease by 2025. Second, to 

optimize care quality and efficiency. Third, to expand supports for 

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hance public awareness and engagement. And finally, to track 

progress and drive improvement. 

In the 11 short months since the National Plan was released, we 

have already made significant progress. In May of 2012, the National Institutes of Health convened an Alzheimer’s Disease Research Summit, which brought together national and international 

researchers to develop recommendations on how to best advance 

Alzheimer’s research. The summit recommendations, which are designed to capitalize on current scientific opportunities, will inform 

Alzheimer’s research for years to come. 

The administration’s Alzheimer’s commitment of $50 million in 

2012 supported some exciting research projects, including a clinical 

trial of an insulin nasal spray that could prevent memory impairment and improve cognition during the initial period of the disease. 

This funding supported the first clinical trial of a treatment to prevent the disease by targeting amyloid, a brain hallmark of AD, 

among a unique family in Colombia whose otherwise healthy members share a genetic mutation that causes early onset of Alzheimer’s disease. 

We have also taken steps to improve the care received by people 

with AD. The Network of Geriatric Education Centers funded by 

HRSA have provided training to over 10,000 doctors, nurses, and 

direct care workers to better recognize the symptoms of AD and 

provide screening and help consumers and families who are living 

with the disease. 

The Administration on Community Living has partnered with 

the National Family Caregiver Alliance to create a resource with 

assessment measures that providers can also use to help identify 

caregiver needs and create a care plan to address them. 

HHS launched Alzheimers.gov, a one-stop resource for families 

and caregivers. There were over 200,000 visits to Alzheimers.gov in 

the first ten months. 

Despite all of the progress, we still have a long way to go in our 

fight against Alzheimer’s disease. We are finalizing the 2013 update of the National Plan, which will add additional steps we take 

to beat this disease. The President’s fiscal year 2014 budget includes a $100 million initiative to fight the disorder through expanded research, improve supports for caregivers, and enhance provider education and public awareness. 

In addition, the President’s Brain Initiative will complement our 

research by giving us insight into healthy brain functioning and 

the impact of Alzheimer’s disease. It may also help pinpoint interventions to treat the disease. 

With many partners, the administration has taken significant 

steps to fight Alzheimer’s over the past two years, but much work 

remains. I look forward to working with you to improve the care 

received by millions of people with the disease, better support their 

families and caregivers, and prevent and effectively treat AD by 

2025. 

[The prepared statement of Mr. Moulds follows:] 

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The CHAIRMAN. Dr. Petersen. 

STATEMENT OF RONALD C. PETERSEN, M.D., PH.D., DIRECTOR, 

MAYO ALZHEIMER’S DISEASE RESEARCH CENTER, MAYO 

CLINIC, ROCHESTER, MN, AND CHAIR, ADVISORY COUNCIL 

ON RESEARCH, CARE, AND SERVICES, NATIONAL ALZHEIMER’S PROJECT ACT 

Dr. PETERSEN. Good afternoon, Chairman Nelson, Senator Collins, and distinguished members of the Senate Special Committee 

on Aging. My name is Ron Petersen. I serve as the Chair of the 

Advisory Council on Research, Care, and Services for the National 

Alzheimer’s Project Act. I am also a professor of neurology and Director of the Mayo Alzheimer’s Disease Research Center at the 

Mayo Clinic at Rochester, Minnesota. 

The first United States Plan to Address Alzheimer’s Disease was 

released in May of 2012 and represents a major step forward toward accomplishing the primary goal of the plan, to prevent and 

effectively treat Alzheimer’s disease by 2025. My colleague, Dr. Don 

Moulds, has nicely outlined the structure of the plan and the accomplishments of the Federal Government. 

The National Alzheimer’s Project Act charged the Secretary of 

Health and Human Services with developing the National Plan, 

but in addition, the law charged the Advisory Council with generating recommendations to the Secretary and directly to Congress. 

I would like to take a couple moments to highlight some of the 

more salient recommendations. 

The research community is poised to make key contributions. 

However, insufficient resources are impeding progress towards 

overcoming the disease. Therefore, the Advisory Council states that 

there is an urgent need for annual Federal research funding to be 

increased to the level needed to fund a strategic research plan and 

to achieve the breakthroughs required to meet the 2025 goal. Initial estimates of that level are $2 billion per year or more. 

Other research endeavors funded by the National Institutes of 

Health are of similar or greater magnitude. Currently, the NIH 

spends approximately $6 billion on cancer research, $3 billion on 

HIV/AIDS research, and a little over $2 billion on cardiovascular 

disease. Yet, at present, the Federal research budget for Alzheimer’s disease is less than one-half-billion dollars. Yet Alzheimer’s disease may be the defining disease of our generation. In 

order to keep it from being the defining disease of the next generation, it is incumbent upon us to make the appropriate investments 

now to enable the research community to carry out effective studies 

to halt the disease. 

Several other recommendations are worth noting. One involves 

the therapeutic pipeline. Another recommendation from the Advisory Council pertains to the compression of the therapeutic pipeline, or shortening of the extended period of time—often over ten 

years—it takes from the discovery of a molecule to the production 

of a drug for treatment. 

This being a National Plan, along the same theme, the Advisory 

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ners to come together to develop a therapeutic approach for the disease. 

This is a global disease. We realize that Alzheimer’s disease is 

not unique to the United States. It is a global disease and we have 

a great deal both to learn from and to share with other countries 

that have developed national plans prior to ours. 

With the aging of America, we realize that the front line of evaluations for individuals at the early stage of Alzheimer’s disease 

will likely be primary care practitioners. As such, the Advisory 

Council has recommended the development of a unified curriculum 

for primary care practitioners to become more knowledgeable about 

Alzheimer’s disease and other dementias to enhance the skills necessary to deliver dementia-capable care. In addition, curricula designed for caring for individuals with Alzheimer’s disease needs to 

be developed at all levels of care, including physicians’ assistants, 

nurses, allied health care workers in skilled nursing facilities, and 

emergency department personnel to ensure uniform practices are 

undertaken for those affected with the disease. 

I would like to close by thanking Congress and the President for 

the initial steps at increasing funding for Alzheimer’s disease research. As Dr. Moulds indicated, the initial redirection of funds in 

fiscal year 2012 yielded two large clinical trials, one for prevention 

and one for treatment. 

While we all recognize that these are very difficult times for the 

Federal budget, this is an issue that cannot wait. With the aging 

of the baby boomers, individuals turning age 65 at a rate of 10,000 

persons per day, it is easy to see why this will be the defining disease of our generation. It will swamp other diseases and be the single most salient condition of aging. It is likely that everyone in this 

room has or will be impacted by this disease in one form or another, and it is our obligation to do everything we can to be certain 

that our children will not have to face the same situation. It will 

take a few courageous people, likely this committee, to make bold 

statements necessary to make it possible for us to achieve the goal 

of the National Plan to Address Alzheimer’s Disease, to prevent 

and effectively treat Alzheimer’s disease by 2025. 

Thank you for the opportunity to represent the Council. 

[The prepared statement of Dr. Petersen follows:] 

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The CHAIRMAN. Dr. Hurd. 

STATEMENT OF MICHAEL D. HURD, PH.D., DIRECTOR, RAND 

CENTER FOR THE STUDY OF AGING 

Mr. HURD. Chairman Nelson, Ranking Member Collins, members 

of the committee, thank you for the opportunity to testify before 

you today on a critically important topic, the monetary costs of dementia in the United States. 

My testimony will be based upon work performed at the RAND 

Corporation and the University of Michigan by me, Paco Martorell, 

Adeline Delavande, Kathleen Mullen, and Kenneth Langa. It was 

published in the New England Journal of Medicine on April 4 of 

this year. 

While our work is about the monetary costs of dementia, my coauthors and I recognized that the emotional costs of dementia are 

vast, indeed, as we have heard today. But in our data, we have no 

good way of measuring those emotional costs. However, even with 

the more modest goal of measuring the monetary costs, there are 

a number of challenges. 

First, most people with dementia have a coexisting health problem, such as a history of stroke or a heart condition. These health 

problems would, by themselves, lead to higher costs. We wanted to 

separate out those costs so as to find the costs attributable to dementia, not the costs of health care of people with dementia. 

A second difficult aspect concerns informal care, that is, unpaid 

care performed by a spouse, daughter, or other family member, or 

others. We already knew that the amount of informal care was substantial, so that the method of placing a monetary value on that 

care could cause our estimates to vary by a great deal. 

We used the Health and Retirement Study. The HRS was first 

fielded in 1992, and since then, it has become the preeminent data 

source for general population representative studies of aging. Funded by the National Institute on Aging and the Social Security Administration, it provides a wide variety of data, including cognition, 

health care use, and costs and informal caregiving. 

We estimated that the prevalence of dementia in the population 

71 or older was 14.7 percent in 2010. We found that persons with 

dementia had about $29,000 more in annual spending for health 

care than persons without dementia, after adjusting for coexisting 

conditions and demographic characteristics. The great majority of 

those costs were for nursing home stays and in-home care that was 

paid for. Adding in the costs of informal care increased the total 

annual costs due to dementia substantially. Depending upon the 

method of valuing informal care, the costs per person with dementia were between $42,000 per year and $56,000 per year. 

We then used Census estimates of the age distribution of the 

population to estimate the total cost of dementia, that is, the total 

cost in the population. We found that attributable actual spending 

was $109 billion in 2010. This cost places dementia as the most 

costly disease in the United States in terms of actual spending. 

Adding in costs for informal care increased this estimate to the 

range of $160 billion to $250 billion per year. 

Because the prevalence of dementia sharply increases with age, 

the aging of the population itself, particularly when the baby boom 

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generation reaches advanced old age, will increase future costs. We 

calculated that by 2040, the costs for care purchased in the marketplace will more than double, from $109 billion to $260 billion in 

real terms. Adding in the costs of informal care increases the cost 

in 2040 to between $380 billion and $510 billion, depending upon 

the method of valuing informal care. 

Our research shows that dementia is costly and that the costs 

will increase sharply, but we did not estimate the distribution of 

costs across households. Even within a year, these costs are unequally distributed, with some households spending nothing and 

others as much as $100,000 per year. 

We suspect that the costs are even more skewed when accumulated over many years because some people with dementia can be 

in nursing homes for five years or even more, or as Dr. Petersen 

suggested, even ten years. The accumulated costs can be financially 

devastating to some families. In principle, this risk could be reduced by long-term care insurance, but the products on the market 

are apparently not well designed. Only about 13 percent of persons 

age 55 or older hold this type of insurance. 

In summary, dementia is very costly and will grow more costly 

unless we find ways of delaying onset. In the meantime, well-designed long-term care insurance could reduce the risk of catastrophic out-of-pocket spending. 

Thank you for your attention. 

[The prepared statement of Mr. Hurd follows:] 

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The CHAIRMAN. Thank you, gentlemen. 

Before I turn to Senator Collins, Dr. Petersen, would you explain 

what happens to the brain from a medical standpoint—the buildup of plaque, why do the neurons not fire, et cetera. 

Dr. PETERSEN. In general, we call Alzheimer’s disease a degenerative disease of the brain, and that means that the nerve cells 

are not working as well as they formerly did. We think that a leading hypothesis right now is this protein that you mentioned, Senator. Amyloid gets deposited in the brain and causes destruction to 

the nearby nerve cells. Then there is a cascade of events that occur. 

Inflammation, other proteins become involved. 

And when that process begins in the memory part of the brain, 

so called the temporal lobe or the hippocampus, the person becomes 

forgetful. Then as the disease progresses that process spreads to 

other regions of the brain, those involved with language, ability to 

pay attention, concentrate, problem solve. And as that starts to 

spread, then other behaviors start to deteriorate. The person loses 

an ability to care for him or herself and the function deteriorates. 

So it is a slow process that begins many, many years, maybe decades before the symptoms actually present themselves, and this degenerative process gradually progresses over time. 

The CHAIRMAN. Is there a trigger that we know of that causes 

the build-up of the protein? 

Dr. PETERSEN. It is a good question. In some instances, yes. In 

one form of the disease, so-called familial or truly inherited Alzheimer’s disease, there is a genetic mutation. Dr. Moulds mentioned the study that is now being funded by the NIH to look at 

a family who has this particular genetic tendency. In those instances, the genetic tendency leads to the build-up of this amyloid 

protein. But that is perhaps only one percent of the disease. 

In the much larger proportion, sort of late onset, more typical 

Alzheimer’s disease, there still may be a familial tendency, meaning that it sort of runs in families. So there are what are called genetic susceptibility polymorphisms, a big term that means you just 

a risk, an increased risk because of a contribution of a variety of 

genes that will lead you to misprocess these proteins and develop 

the disease. 

There still might be some environmental triggers that accentuate 

that, head trauma being one of them. So there are some environmental factors that bring it on, as well. But we do not fully understand why one person with the same genetic make-up may develop 

the disease, the next person not. So research underway. 

The CHAIRMAN. Do we know the molecular structure of the protein? 

Dr. PETERSEN. Absolutely. We know a great deal about the 

amyloid protein, the tile protein. Amyloid makes up the plaques in 

the brain. The tile protein makes up the tangles in the brain. The 

defining characteristics of the disease in the brain, plaques and 

tangles. So when someone passes away, has an autopsy, you look 

at the brain under the microscope. To call it Alzheimer’s disease, 

they have to have these plaques and tangles. 

We know a great deal about the make-up of these proteins, the 

genetic sequencing of them, when things get misprocessed, how 

they get misprocessed, the enzymes that cause the misprocessing, 

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et cetera. So we know a great deal about it, and that has resulted 

in many therapeutic attempts aimed at various aspects of that 

process. So we do know a lot about the basic biology of the disease. 

The CHAIRMAN. But we have not found the molecules or the 

genes or the proteins that could reverse the process of the buildup of this plaque. 

Dr. PETERSEN. Essentially, that is correct, meaning that we do 

not have a disease modifying therapy, meaning we do not—we are 

unable to get at the underlying plaque and tangle process and stop 

it. But that is a rich area of research right now. Many trials are 

underway, many approaches to doing that, either blocking the 

building up of the protein or enhancing the removal of the protein. 

All of these are possibilities, but we are not there yet. 

The CHAIRMAN. Thank you for that explanation. 

Senator Collins. 

Senator COLLINS. Thank you, Mr. Chairman. 

Dr. Petersen, noted neurologist and author Dr. Oliver Sacks has 

written about music’s role and impact on patients with neurological 

disorders like Alzheimer’s. I could not help but be struck by Ashley’s poignant comment when she said her father is having a hard 

time remembering her name, and yet just a few moments before 

the hearing, I heard him playing the guitar, remembering very 

complicated musical sequences, singing with his daughter, and able 

to change chords and play significant portions of several of his 

songs. 

Is there a neurological reason why music can have such a powerful effect on a patient with dementia and why the ability to remember and respond to music is retained even when the ability to remember the name of your daughter is not? 

Dr. PETERSEN. It is a striking contrast in Mr. Campbell, his 

dense memory problem, as we have all seen, even manifesting in 

his inability to remember Ashley’s name, and yet his ability to perform on stage. And, in part, there are neurologic explanations because of the parts of the brain that are involved in those different 

activities. 

So, as I was mentioning to Senator Nelson that the brain—the 

disease starts in the memory part of the brain, and that is the part 

of the brain that sort of allows us to learn new information and recall recent information. Very old information—where we grew up, 

where we went to school—those kinds of events are often retained 

well into the disease. 

In addition, the ability to play the guitar, which neurologists 

sometimes call procedural memory, motor skill memory, can be relatively preserved far into the disease process. So it is not an equal 

opportunity. The brain is not an equal opportunity organ to be affected by the disease. Certain regions are more susceptible to others. 

So it is quite astounding that Mr. Campbell can be on the stage, 

can play music apparently fairly normally, really, things he has 

done many, many times going back literally decades. And if you 

prompt him with the lyrics of some of the songs with a teleprompter, it is business as usual. Mr. Campbell looks like the Mr. 

Campbell of years ago. Yet between songs, he may, as Ashley was 

indicating, he may wander around and then it becomes a little bit 

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of freeform as to what is going to happen next and we cannot necessarily predict, and he will have trouble with where he is going 

and what is happening next. 

So it really involves the regions of the brain and the way the disease evolves over time. 

Senator COLLINS. Thank you. 

In addition to your role as a physician and as the Chair of the 

Advisory Council, you are one of the world’s leading researchers on 

Alzheimer’s through the Mayo Clinic. Could you tell us a little bit 

more about promising research that you are undertaking? I am 

hoping for everyone here, for all of us, that there are some promising developments or good news on the horizon. It has been a long 

time since there has been a breakthrough. I think it goes back to 

2003, as I recall. 

Dr. PETERSEN. Thank you, Senator. You have given me too much 

credit. I tend to work around a lot of bright people and they are 

the ones who are responsible for much of the progress in the disease. 

I think there are some bright areas with respect to the disease 

itself and what we understand about it and getting ready to intervene. Some of the work that we are doing at the Mayo Clinic involves what we call the Mayo Clinic Study of Aging. Very briefly, 

this is a random sample of people who live in our region who are 

aging fairly normally. We have been able to evaluate these people 

ages 50 to 90, randomly sample them, bring them in, and study 

them thoroughly clinically. But we are also able to look at them 

with respect to what are called biomarkers, and by biomarkers, I 

mean images of the brain, MRI scans, PET scans. We can even 

image this protein in the brain called amyloid now when people are 

normal. 

So we are poised to be able to characterize people, perhaps it is 

an overstatement to say a prediction formula, but that type of approach, risk profile of people based on their age, maybe their education, family history, some genetic features, maybe some of these 

biomarkers, that we will be able to say, you have a thus and so 

probability of developing the symptoms of Alzheimer’s disease by a 

certain age. 

That helps us, then, to have these individuals ready and poised 

to be able to take a therapy when that therapy—and I think it is 

‘‘when,’’ not ‘‘if’’—that therapy is, in fact, developed, so that we will 

be able to use that information regarding an individual’s risk to 

dictate what kinds of therapies we use. 

For example, what if an immunotherapy, an antibody or a vaccine, is developed? That is very promising, under investigation 

right now. It is likely to be expensive and maybe a little risky. So 

it may not be completely benign to give this. So we are going to 

need to know who is at the top third of the risk, who is in the middle, and who is in the bottom because we may want to expend 

those resources on individuals at the top end of it before they express the symptoms of the disease. 

So I think that that type of work is out there. There is a great 

deal of work going on regarding the clinical characteristics and understanding of the disease. The therapy side is getting there but 

has not reached that pinnacle right now. But as soon as that hapDeShaun on LAP51NQ082 with DISTILLER

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pens, these two will merge and, hopefully, we will be able to have 

an impact on that disease. 

Senator COLLINS. Thank you. 

The CHAIRMAN. It is just amazing to me that with all of our ability to understand, that we cannot make the breakthrough here. We 

have not been able, for example, in others, such as ALS, 

Amyotrophic lateral sclerosis, Lou Gehrig’s disease. And yet I think 

we are right on the cusp of the big breakthrough. 

Dr. PETERSEN. I could not agree more, Senator, that I think we 

are just poised. The research community is anxious to be able to 

make those contributions. We cannot say yet today, tomorrow, 

where it is going to be. But I think so, and it is going to be a huge 

breakthrough when it happens. 

The CHAIRMAN. Senator Whitehouse. 

Senator WHITEHOUSE. First, let me thank Chairman Nelson for 

holding this hearing. This is such an important topic and I think 

you have done a really wonderful job of bringing very effective witnesses here. I also wanted—and the Ranking Member, as well. 

Thank you, Senator Collins. 

I also wanted to thank the advocates who have been here today 

and compliment them on what I think is a really impressive piece 

of demonstrative literature that they brought with them. Donna 

McGowan and her husband, Bill, from Rhode Island came to visit 

me and they showed the graphic that you all have been handing 

out all day today, and it is really extraordinary when you look at 

the cost piled up in this huge line that Medicare and Medicaid will 

spend on this, not private insurance but just the Federal Government through Medicare and Medicaid, and then you compare what 

we are spending on research to try to avoid those costs. And if you 

do, you have got to look down to this little thing which you cannot 

even see out there. It is about as wide as my fingernail. This little 

speck is the amount that we are spending on NIH research to combat an illness that is creating that much cost. 

As Ashley demonstrated so clearly, the cost of Alzheimer’s is 

measured in a great deal more than dollars. But I think the case 

that has been made with this kind of material is really terrific and 

I look forward to working with my colleagues to make sure that 

that funding is protected and increased and we have a chance to 

get ahead of this illness. 

One of the situations that emerges when a family is faced with 

this illness is the question of decisions that are going to be made 

as the illness progresses and how people wish to be treated. And 

it is incredibly important to make those decisions early on while 

the individual suffering from the disease still has the ability to 

make those decisions and determine what they want. And there are 

a great number of us on this committee—I know Senator Collins 

and Senator Nelson have been very active in this area—who want 

to improve the way in which Americans express their wishes about 

how they wish to be treated when their illnesses are advanced and 

make sure that living wills and advance directives and things like 

that are honored. 

I would love to ask the panel what your experience has been at 

how effectively we are treating that goal with patients who have 

this illness and what kind of progress should we be making to 

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make sure that those choices are being driven by the wishes of the 

patient and the family and not just the grind of the health care 

system. 

Mr. MOULDS. So, why don’t I start and then Dr. Petersen, because he has obviously encountered this with patients in the course 

of his career, both as a researcher but also as someone providing 

care, medical care. 

But there are a number of steps that are taken in the plan to 

provide information and encourage health care providers to have 

just the conversations that you are alluding to right now earlier on 

in the process. So care, planning, and coordination is incredibly important to this population. If ever there is a population where the 

case can be made that you need those elements in the provision of 

care, it is with patients with dementia. 

We are pushing out through HRSA’s Geriatric Education Centers—there are 45 of them over the country—as part of NAPA information to try to educate health care providers about best practices in dementia care, and part of that is having these care planning and coordination conversations in the doctor’s office earlier in 

the process. 

As for the question, the second part of the question, which is the 

question about advanced dementia care planning, that was, in fact, 

one of the recommendations that was made by the Advisory Council to the Secretary for inclusion in the 2014 Plan, so the second 

iteration of the Plan. All of those proposals or recommendations are 

before the Secretary at the moment. She is taking all of them very 

seriously, and we are happy to report back out, we expect that the 

second iteration of the Plan will be made public in May sometime, 

probably mid-May. There will be some discussion at the Advisory 

Council meeting on Monday, but we are happy to report further 

when she has made her decisions about the second iteration of the 

Plan. 

Senator WHITEHOUSE. Thanks. 

Dr. Petersen, anything to add in my remaining 38 seconds? 

Dr. PETERSEN. Just a quick comment that it is increasingly important to do this. And I think our recommendations in the Plan 

have suggested that in geriatric education, because it is particularly important in this disease to do it earlier rather than later, because by the process of the disease itself, people lose the insight as 

to what is going on, because when the parts of the brain become 

involved with the disease that allow us to introspect and look at 

ourself, the people are no longer able to make those kinds of decisions. So emphasizing the importance of doing it early. 

Senator WHITEHOUSE. Thank you. 

The CHAIRMAN. Senator Donnelly. 

Senator DONNELLY. Thank you, Mr. Chairman, and I want to 

thank all of our witnesses for all your hard work on this issue. 

I also want to mention my former colleague in the House, Dennis 

Moore, who is dealing with this now, who is an extraordinary leader, extraordinary person, and so many Hoosiers who are here today 

for Alzheimer’s. 

Dr. Moulds, I wanted to ask, FDA recently approved a new diagnostic technology and it helps diagnose Alzheimer’s. CMS is in the 

process of deciding whether it should be considered for national 

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coverage under Medicare and Medicaid. And I was wondering if 

you are working with CMS to ensure that all appropriate Medicare 

patients have access to technologies that can help with early diagnosis of Alzheimer’s. 

Mr. MOULDS. Sure. The short answer is that CMS has been quite 

engaged in this process. We have—I mentioned earlier in my opening remarks about the Interagency Working Groups that we established very early on. They are in three general areas, on the research side, clinical care, and then long-term care services and supports. CMS is chairing the clinical care subcommittee. There has 

been a good amount of conversation about diagnostics at CMS. 

And more to the question about how to expedite the review of potentially helpful both diagnostics and, hopefully, going forward, 

therapeutics, there is a process that exists where that work can go 

on concurrently. CMS is reviewing, I believe, a number of diagnostic tools at the moment. I cannot speak to decisions—— 

Senator DONNELLY. Sure. 

Mr. MOULDS [continuing]. But they go through the normal channels where they are reviewed by an external committee for efficacy 

and for the other considerations that go into making those decisions. 

Senator DONNELLY. Thank you. 

Dr. Petersen, I recently heard about an area called epigenetics 

and was wondering what you have seen in this area of almost— 

seeing its potential for treating Alzheimer’s, what you think of it, 

what you know of it, and is this a path that seems to show promise. 

Dr. PETERSEN. I think it might very well be promising insofar as 

that epigenetics refers to a trait of a particular disease that before 

the full expression of the disease appears. So, for example, if somebody has a genetic tendency to develop Alzheimer’s disease by virtue of their genetic make-up, there may be signs that the disease 

is manifesting itself early. 

So, for example, take imaging. Imaging—certain regions of the 

brain, as I was mentioning earlier, are preferentially affected by 

the disease. So there may be some signatures in the brain with 

shrinkage in certain parts of the brain that can be related to the 

genetic make-up of that individual and imply that this person is on 

the road to developing the disease. 

Senator DONNELLY. And I certainly do not have your level of 

knowledge, obviously, but is that an area that could, in effect, turn 

it off at that point, turn off the Alzheimer’s? 

Dr. PETERSEN. It gives us an opportunity to pick up the disease 

process at an earlier point in time. So if we have effective therapeutics, we could intervene at that earlier point in time when that 

genetic signal, that epigenetic signal is there, and it gets to the 

issue of certain markers that characterize the disease and are they 

going to be therapeutic targets for the disease. We are not there 

yet, but that is where we are going. 

Senator DONNELLY. And as we look at Alzheimer’s and talk 

about 2025, do you have milestones that, as we look forward, here 

is where we hope to be by this time, here is where we hope to be 

by this time, so that we know either we are making progress or we 

are starting to fall behind from where we hope to be? 

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Dr. PETERSEN. A very timely question. With the Advisory Council 

meeting that is coming up on Monday that Dr. Moulds just referred 

to, we are going to be discussing just that issue, and our colleagues 

at the National Institute on Aging, Dr. Richard Hodes and his 

team, have developed a rather extensive chart of milestones mapping the plan, the plan that was translated into the research summit that was held at NIH last May, the recommendations coming 

out of that summit insofar as what are actual items that are actionable and when. So the grid has been divided into short-term 

goals, intermediate goals, long-term goals. 

Senator DONNELLY. And I do not mean to interrupt you. I have 

ten seconds left. I just want to ask you, is the most important thing 

we can do to continue with the research funding? 

Dr. PETERSEN. I am a little biased, but absolutely. 

Senator DONNELLY. Okay. Thank you. 

Thank you, Mr. Chairman. 

The CHAIRMAN. Senator Blumenthal. 

Senator BLUMENTHAL. Thank you, and I want to join in thanking 

our Chairman and Ranking Member for having this hearing and 

also the advocates from all around the country who have been so 

steadfast and vigorous in championing this cause and also advocating for the kind of research that is necessary and caregiving to 

address this problem. 

I want to begin with your testimony, Dr. Moulds, saying that the 

President’s fiscal year 2014 budget includes a $100 million initiative to fight this disorder through expanded research, improved 

supports for caregivers, and enhanced provider education and public awareness. 

We have seen the charts. You know the numbers better than I. 

Is $100 million really enough? I mean, does it even come close to 

being enough? 

Mr. MOULDS. That is obviously a very difficult question to answer. What I can tell you is that the things that we are able to do 

with the investments that the President has identified, that we 

were able to do in 2012 and moving forward with both the insulin 

nasal spray trial and the trial in Colombia for early onset, were 

tremendously important activities. 

I think if you were to ask anybody in the research community 

whether there are things beyond what you could fund with $100 

million that would be worthwhile research, the answer would almost certainly be yes. But if you think about the NIH budget and 

the way that it has been affected by sequester, the fact that we are 

moving forward with the research agenda this year, that the President has identified funds in 2014 reflects a tremendous commitment to fighting this disease. 

Senator BLUMENTHAL. But I take it that if you had double or triple or a lot more money, there would be worthwhile research to be 

done. 

Mr. MOULDS. So, to be clear, I am not an Alzheimer’s researcher, 

so I would defer to people who are. 

Senator BLUMENTHAL. I am happy for you to defer, but I think 

you know enough—— 

Mr. MOULDS. Yes. 

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Senator BLUMENTHAL [continuing]. I think almost everyone in 

this room knows enough to say, yes. 

Mr. MOULDS. So, I would reiterate the answer that I gave earlier, 

which is that when you talk to researchers in the community and 

ask the question that you just put, the answer is, yes, there is more 

that can be done. There is a lot that can be done. We are making 

tremendous efforts to move this agenda forward. We did it last 

year. We are doing it this year. We will be doing it in 2014. 

Senator BLUMENTHAL. Dr. Petersen, did you have anything you 

wanted to add? 

Dr. PETERSEN. In my remarks, I indicated that the Advisory Council has recommended a research budget of about $2 billion a 

year. A reasonable question, where did that number come from? 

Well, in fact, the Alzheimer’s Association undertook an exercise 

during the development of the first plan and the recommendations 

surrounding the first plan asking experts in the research community, in your area of research, what are short-term goals, what are 

medium goals, and can you put a price tag on that? 

As difficult as that is, in fact, many researchers came together 

throughout the entire spectrum of the disease, basic biology to 

treating patients, put numbers on their goal, what time frame and 

all, and, in fact, generated this $2 billion. So I think, again, the 

community really can be receptive of that figure as being relatively 

solid. 

Senator BLUMENTHAL. Thank you. 

Well, I understand, Dr. Moulds, the limitations of what you can 

say and what your role is here. My question to Dr. Petersen was 

going to be about how that $2 billion number is derived. You know, 

it could be $20 billion. It could be $100 billion. But $2 billion seems 

to be the consensus number that the research community would 

pinpoint. 

Mr. MOULDS. I mean, I think so. And, again, it is $2 billion or 

more, because, in fact, to do a clinical trial in Alzheimer’s disease 

may be $100 million-plus to run it out. This is a chronic disease. 

It takes many people to test a particular therapeutic. So that is 

just one aspect. But there are a lot of other basic science questions 

that need to be answered, as well as clinical questions regarding 

the characterization of the disease. So I think that is a realistic 

number. 

Senator BLUMENTHAL. Thank you. 

One last question, if I may ask you, Dr. Hurd. We have not, in 

my view, developed the kind of private insurance tools that families 

need to deal with this problem. Could you give us some thoughts 

about whether you believe that there are private insurance policies 

and products available now to help families address the huge, 

humongous, often heartbreaking costs financially that they need to 

face in dealing with a family member afflicted with this disease. 

Mr. HURD. Well, I think, indeed, it is a big lack in the insurance 

market and it exposes some families to tremendous financial risk, 

catastrophic risk, because of the chances—there are not large 

chances, but there are chances that they might have to support a 

family member in a nursing home for ten years, and we know the 

costs of one year in a nursing home are approaching $100,000 per 

year. So you can see what the numbers are. 

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The main risky group would be where one spouse remains in the 

community and the other spouse is in the nursing home, because 

then the spending will come out of the family’s resources and impoverish the person in the community. 

Why are there not? So, we know that the products that are there 

are not satisfying to families because the take-up rate, as I mentioned, is 13 percent. Why are the policies unsatisfactory? It is difficult for the insurance companies to write kind of correct kind of 

policies. So the typical insurance policy has caps on the daily rate. 

It has caps on the lifetime amount that will be paid out. So the insurance policies do not address the extreme upper tail of costs, 

leaving families exposed to that cost. 

That is the part that needs to be covered, because, after all, you 

do not need insurance—well, we have insurance for eyeglasses, but 

you really do not need insurance for eyeglasses. You need insurance when your house burns down, not when you scorch your rug. 

And that is the analogy. 

But insurance companies do not know what that long-term, what 

that tail risk is, either, because, for example, suppose we have improvements in the ability to keep people alive with Alzheimer’s. So 

rather than having ten years in a nursing home, it now goes up 

to 15 or 20. The insurance companies do not know how to price 

that. They do not know what the actuarial value is of that and they 

do not know what the risk of that happening is. 

So there is a risk out there that nobody is willing to pick up and 

to bear, and we do not know the price of that risk. That was—the 

CLASS Act was supposed to address that issue, and, of course, the 

CLASS Act was not successful. But that is a gap in the insurance 

market that possibly public policy should be addressing. 

Senator BLUMENTHAL. Thank you very much, and again, my 

thanks to the panel and to our Chairman. 

The CHAIRMAN. And just to underscore what Senator Blumenthal 

has said, right now, this is about a $140 billion a year problem, 

and in another 30 years, it is going to be a trillion dollar problem. 

And of that trillion per year, it is going to be about two-thirds of 

that paid by Medicare and Medicaid. So, Dr. Petersen, another reason for you all to find a cure, not even to speak of the heartbreak 

and the personal stories, the cost. 

Now, Dr. Hurd, I want to ask you cost, but from a different 

angle. To take care of an Alzheimer’s patient, it is usually about 

$28,000 a year. A lot of the caregivers are the family members that 

are the same age, and the average household income of that age 

group over 65 is about $35,000 a year. So how are the families 

going to manage the cost? Until we find the cure, is it that we are 

looking at bankruptcy? 

Mr. HURD. The cost, of course, is spread over a number of payers, 

and families spend what they are able to. But we—families are facing bankruptcy. Families are facing catastrophic out-of-pocket 

spending for reasons that I mentioned previously. Right now, there 

is no effective way for families in particular situations to avoid 

that. There are no insurance products. There is really nothing that 

those families can do except do the best they can, and it is a situation—it is an insurable situation in principle where costs are enorDeShaun on LAP51NQ082 with DISTILLER

52 

mous for small numbers of people, less enormous for larger numbers of people. But we do not have those insurance products. 

The CHAIRMAN. To underscore what Senator Whitehouse had 

said, we are spending over close to $6 billion a year on cancer research and, of course, the budgets have been going backwards on 

Alzheimer’s research. It was about a half-a-billion dollars. In the 

sequester, that was cut back. The President has come out with his 

proposal, which is about a $100 million increase, which should take 

it somewhere in the range of $600 million. But that is a far cry. 

Some experts have said that if you really want to make some advances in finding the cure, that we ought to be spending $2 billion 

a year on research. Does anybody want to comment on that? 

Dr. PETERSEN. Well, I think that this is an appropriate observation, and the funding that has been expended on cancer research, 

on HIV/AIDS, on heart disease, presumably has been effective, because the annual mortality, number of deaths per year, in all of 

those disorders is, in fact, decreasing while the number of deaths 

due to Alzheimer’s disease, related to Alzheimer’s disease, is skyrocketing in the opposite direction. 

So one would think that—again, I am not an economist, but the 

investment of around $2 billion a year for research now would pay 

back so many times over in terms of the savings that Dr. Hurd has 

alluded to if, in fact, these costs could be reduced. It makes sense 

that this is the investment that needs to be made now. 

The trouble is, this is a difficult time—you know better than I— 

to make these kinds of statements. But, in fact, the investment has 

to be made right now. 

The CHAIRMAN. Presently, we have some assisted living facilities 

that offer specialized memory care units. Dr. Hurd, how do we go 

about having them properly regulated and how do we let people 

know what is appropriate? 

Mr. HURD. Well, I wish I had the answer to that. You have asked 

me something out of my area of scientific expertise. I could give 

you an answer as an informed reader of the New York Times or 

Wall Street Journal, but not as a scientific effort, so maybe I 

should pass to Dr. Petersen or Dr. Moulds on that one. 

Mr. MOULDS. I can take a little bit of a stab at it. So, assisted 

living facilities are regulated by States, which limits to a significant degree the Federal Government’s ability to intervene in the 

way that they are run. We certainly engage in research in my office, for example, at the Administration on Community Living, 

looking at best practices in these facilities, looking at model regulatory policy. We share practices across States. So there are those 

possibilities, but it is one of those things that is largely controlled 

by States. 

The CHAIRMAN. Do you think there is a Federal role for us to try 

to ensure that these residential facilities are providing the highquality care? 

Mr. MOULDS. I would say that, certainly, where we have levers, 

it would be an important area to be using those levers. As I said, 

we have limited levers available to us now. We can certainly share 

and push information and have not been shy about doing that. 

The CHAIRMAN. Do we have any leverage? 

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53 

Mr. MOULDS. As regulators, no, and there are—I mean, insofar 

as they are Medicaid beneficiaries and Medicare beneficiaries that 

live in some of these cases, we have—there are potentially some 

hooks there. But, again, the facilities themselves are regulated by 

the State. 

The CHAIRMAN. Senator Collins. 

Senator COLLINS. Thank you, Mr. Chairman. 

Dr. Hurd, I am very interested in the research that you have 

done on the costs, since many of us are aware of the emotional toll 

that Alzheimer’s takes and the horrible suffering that the victims 

and their families endure. Around here, you also have to look at 

the economics of a disease. 

Now, given that cancer and heart disease, cardiovascular diseases, are also age-related, could you give us a comparison of the 

trend lines for those diseases in terms of costs versus Alzheimer’s. 

Mr. HURD. I cannot give those directly. The cancer and the heart 

numbers that we came up with and cite in our paper come from 

studies of the medical expenditure panel survey, and I have not 

seen equivalent trends on those. But the defining aspect, of course, 

of the cost associated with Alzheimer’s and dementia is it is agerelated. Roughly speaking, the prevalence doubles every five years 

beginning among people in their 70s, and as the baby boom generation reaches those advanced old ages, then we see the very large 

increases in prevalence and, therefore, costs. 

I would not think those same trends would pertain to cancer and 

heart, where the age prevalence is not nearly so strong and so 

striking, firstly. And, secondly, the baby boom generation, the extremely large generation associated with those birth years, will 

have passed through those critical years and now are approaching 

the ages when Alzheimer’s and dementia is so prevalent. 

Senator COLLINS. And, fortunately, and in part due to the investments that we have made in research for those diseases, we do 

have some treatments, means of delaying the onset, even in some 

cases cures, and that is what is so troubling on the Alzheimer’s 

side, is that we can do so little. 

Dr. Moulds, I cannot help but think that this is one of those classic cases where an investment up front is going to save our nation 

so much money in the long term, and when we have Federal health 

programs like Medicare and Medicaid already in financial trouble, 

already teetering in some cases, does it not make sense to make 

that kind of investment in the hopes that we can save money later 

in Medicare and Medicaid? I am just talking about the economics. 

I am putting aside the terrible human suffering right now. 

Mr. MOULDS. Sure, and absolutely, and you would get a wholehearted agreement from both the President and the Secretary on 

that statement. It does make sense to invest in this now, which is 

why the President put forth the initiative a year and a half ago 

now and reiterated it in his 2014 budget. 

I will also add that there are, in addition to investments in the 

research side, there are key investments on the caregiver side that 

are incredibly important. One of the things that we know, that the 

research has shown about caregivers—and keep in mind that the 

best outcome for everyone, for a person with Alzheimer’s, for their 

loved ones and for the government, is to enable a person with the 

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54 

disease to stay in their home, be cared for by their family or other 

loved ones as long as possible. 

But what the research shows is that it is often fairly small things 

that make those arrangements impossible, that lead to a person 

with Alzheimer’s disease needing to go into a nursing home. So it 

is a sprained ankle or a thrown back or the fact that they could 

not quite accommodate the job that they are doing at the same 

time. So strategically placed reinforcements for the people who are 

providing the care, very, very important, as well. 

Senator COLLINS. Well, it is also why we should not be cutting 

home health care, because that can help people stay in their homes 

and avoid far more expensive institutional care, as well. 

I guess my concern today is while I completely commend the President for increasing Alzheimer’s research by $100 million in his 

budget and paying attention to the caregiver side, as well, when we 

hear that the Council has advised that at least $2 billion be spent, 

and I believe the number in the President’s budget is $564 million, 

we are a long ways away from the recommended amount. 

Now, I am also very cognizant of the budget constraints that we 

are living under. But does the administration have a plan for 

ramping up the amount, the investment in Alzheimer’s so that it 

is more on a pure level with the amount that we are investing in 

AIDS or cancer or other serious diseases? 

Mr. MOULDS. I think you framed the challenges very well. Certainly, the President and the Secretary recognize that this is important on many different levels. They are absolutely committed to 

funding this research going forward. I cannot speak to Presidential 

budgets beyond the 2014 budget, obviously, but I can testify about 

the imperativeness that both of them see in moving forward with 

this agenda. 

Senator COLLINS. When I look at the research levels, it seems to 

me that there are two areas that are really underfunded, and diabetes is one and Alzheimer’s is another, when you look at the costs 

that they are imposing on Federal health care programs, not to 

mention the suffering they are imposing on families across this 

country. 

Let me just ask a couple more questions, if I have the Chairman’s indulgence. 

The CHAIRMAN. Take your time. 

Senator COLLINS. Thank you. 

Dr. Petersen, one thing that we are going to hear is that, let us 

say we could magically wave a wand and produce the $2 billion 

that has been recommended, which I would love to do. What we are 

going to hear is the question, can it be spent wisely? If the current 

funding level is around $470 million, that is a huge leap, and we 

do not have—we cannot waste a single dollar nowadays. Are the 

projects out there? Are the clinical trials available? Would the 

money be well spent, or would it be more productive to have the 

money ramp up and have a plan over the next five years for what 

the funding level should be so that researchers like you can know 

what is coming and be prepared to spend this money very wisely? 

Dr. PETERSEN. Well, I think that the research community is 

ready to be able to absorb that and move ahead. But toward that 

exercise, with the summit that was held at the NIH last May for 

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55 

Alzheimer’s disease, as I was indicating earlier, there was a 

prioritization and a categorization of research areas and what it 

would take in each of those fields. That has been translated at the 

National Institute on Aging into certain concepts that would be appropriate for research. That was approved by the National Council 

on Aging, the National Advisory Council on Aging, and that has 

been translated into RFAs, requests for applications to the research 

community. They have been put out and now there have been research grant applications that have come in in response to that. 

On May 1 and 2 this year, there is going to be a similar summit 

for the non-Alzheimer’s dementias, the frontal temporal, the dementia with Lewy bodies, vascular disease. The same exercise will 

be undertaken then, where the disease areas are being brought out, 

categorized, the experts are coming together, and a prioritization of 

research undertakings will be made such that if the funding were 

available, here is where it would go. 

So I think the NIA is acting and the NIH is acting proactively 

as if. Now, if that does not come to be, we have got a problem. But 

I think people are thinking ahead because there is the hope that 

either the ramping up or a large bolus will come forward, and I 

think the research community would be able to march forward very 

rapidly. 

Senator COLLINS. Thank you. 

My final question, Dr. Moulds, Dr. Petersen referred to the international—I think there was an international conference that was 

held. If we can coordinate efforts around the globe for research, we 

have the potential to ensure that there is faster progress. Could 

you update us on what is being done to coordinate Alzheimer’s research around the world as the National Alzheimer’s Plan Act envisioned? 

Mr. MOULDS. I would be happy to. As you know, because you 

were instrumental in its passage, the NAPA legislation directed us 

to develop structures to better coordinate these efforts internationally. 

There are a couple of different efforts underway at the National 

Institutes on Aging. The first was the one that Dr. Petersen referred to, which was the symposium where we did international 

planning and looked at priorities in funding projects moving forward. They have also developed a tool that effectively allows countries and non-governmental entities to input work globally that is 

going on so that everyone is aware of work going on internationally. 

There are a number of countries that have plans in place, so in 

England, it is the Prime Minister’s Dementia Challenge. There has 

been an ongoing initiative in France. We have been contacted by 

the Japanese, who are working on a plan. The Koreans are working 

on a plan. This is an issue that is not constrained to our borders. 

Many of those plans also include research components and dollars 

that are dedicated to research. 

So we are engaging at a couple of different levels. One is a multilateral level, which are the planning activities that I mentioned 

and the tools for engaging multilaterally. But we are also engaging 

in a bilateral way. So we have frequent conversations with the 

leaders of the plan. 

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In Britain, for example, many of the initiatives that are part of 

their initiatives are starting—they are doing both demonstrations 

and evaluations, so we share early results from initiatives that are 

underway. We have the leader of the British plan and the leader 

of the Canadian plan who are coming to testify at the Advisory 

Council on Monday. 

So this is a very global effort. This type of coordination is going 

to be absolutely essential to maximize limited resources. But there 

are many partners in this because as populations age globally, this 

becomes more epidemic in all of the nations that are facing these 

aging challenges. 

Senator COLLINS. Thank you. 

I want to thank our witnesses today. You were all very illuminating and helpful to us. And most of all, I want to thank our 

Chairman for holding this very important hearing. I think it has 

been so heartening for the advocates who are here today to get this 

update on the plan and on our personal commitment, as well. I 

have worn this purple suit for many years during the annual day 

that the Alzheimer’s advocates come to town, and I fear I am going 

to have to keep it around for many, many more years and I would 

like us to get a cure so that I can retire it once and for all. 

[Laughter and applause.] 

The CHAIRMAN. Well, it is very becoming. 

Senator COLLINS. Thank you. 

[Laughter.] 

The CHAIRMAN. Dr. Moulds, we look forward to the receipt of the 

new plan. When do you think that will be coming? 

Mr. MOULDS. So, we anticipate probably mid-May, but almost assuredly sometime in May. As I mentioned, the second—this is an 

annual process, so we are required by the statute to update on an 

annual basis. The Advisory Council is charged with providing recommendations to the Secretary, which we share with Congress, as 

well, and post on our Web site. We have tried to make this as both 

transparent and as public a process as possible for numerous reasons. 

So the recommendations are with the Secretary. We are making 

great progress on the second iteration of the plan and we anticipate 

that it would come out shortly after the Advisory Council meeting, 

which is next week. 

The CHAIRMAN. Well, we look forward to it, and if you would rap 

the knuckles of OMB for delaying your testimony to me for this 

hearing, I would appreciate it. 

We are going to hold the record open for one week. There are 

many advocates that I know want statements entered into the 

record. 

Anything more, Senator Collins? 

Senator COLLINS. No. Thank you again, Mr. Chairman. 

The CHAIRMAN. All right. Thank you. 

The meeting is adjourned. 

[Whereupon, at 3:43 p.m., the committee was adjourned.] 

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