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86–299PDF 2014

A REPORT ON THE G8 DEMENTIA SUMMIT

HEARING

BEFORE THE

SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH, 

GLOBAL HUMAN RIGHTS, AND 

INTERNATIONAL ORGANIZATIONS

OF THE

COMMITTEE ON FOREIGN AFFAIRS 

HOUSE OF REPRESENTATIVES

ONE HUNDRED THIRTEENTH CONGRESS

SECOND SESSION

JANUARY 15, 2014

Serial No. 113–159

Printed for the use of the Committee on Foreign Affairs

(

Available via the World Wide Web: http://www.foreignaffairs.house.gov/ or

http://www.gpo.gov/fdsys/

(II)

COMMITTEE ON FOREIGN AFFAIRS 

EDWARD R. ROYCE, California, Chairman 

CHRISTOPHER H. SMITH, New Jersey 

ILEANA ROS-LEHTINEN, Florida 

DANA ROHRABACHER, California 

STEVE CHABOT, Ohio 

JOE WILSON, South Carolina 

MICHAEL T. MCCAUL, Texas 

TED POE, Texas 

MATT SALMON, Arizona 

TOM MARINO, Pennsylvania 

JEFF DUNCAN, South Carolina 

ADAM KINZINGER, Illinois 

MO BROOKS, Alabama 

TOM COTTON, Arkansas 

PAUL COOK, California 

GEORGE HOLDING, North Carolina 

RANDY K. WEBER SR., Texas 

SCOTT PERRY, Pennsylvania 

STEVE STOCKMAN, Texas 

RON DESANTIS, Florida 

TREY RADEL, Florida 

DOUG COLLINS, Georgia 

MARK MEADOWS, North Carolina 

TED S. YOHO, Florida 

LUKE MESSER, Indiana 

ELIOT L. ENGEL, New York 

ENI F.H. FALEOMAVAEGA, American 

Samoa 

BRAD SHERMAN, California 

GREGORY W. MEEKS, New York 

ALBIO SIRES, New Jersey 

GERALD E. CONNOLLY, Virginia 

THEODORE E. DEUTCH, Florida 

BRIAN HIGGINS, New York 

KAREN BASS, California 

WILLIAM KEATING, Massachusetts 

DAVID CICILLINE, Rhode Island 

ALAN GRAYSON, Florida 

JUAN VARGAS, California 

BRADLEY S. SCHNEIDER, Illinois 

JOSEPH P. KENNEDY III, Massachusetts 

AMI BERA, California 

ALAN S. LOWENTHAL, California 

GRACE MENG, New York 

LOIS FRANKEL, Florida 

TULSI GABBARD, Hawaii 

JOAQUIN CASTRO, Texas

AMY PORTER, Chief of Staff THOMAS SHEEHY, Staff Director

JASON STEINBAUM, Democratic Staff Director 

SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH, GLOBAL HUMAN RIGHTS, AND

INTERNATIONAL ORGANIZATIONS

CHRISTOPHER H. SMITH, New Jersey, Chairman 

TOM MARINO, Pennsylvania 

RANDY K. WEBER SR., Texas 

STEVE STOCKMAN, Texas 

MARK MEADOWS, North Carolina 

KAREN BASS, California 

DAVID CICILLINE, Rhode Island 

AMI BERA, California 

(III)

C O N T E N T S 

Page

WITNESSES 

Richard J. Hodes, M.D., director, National Institute on Aging, National Institutes of Health, U.S. Department of Health and Human Services .................. 5

Mr. George Vradenburg, chairman and founder, USAgainstAlzheimer’s ........... 24

Mr. Harry Johns, president and chief executive officer, Alzheimer’s Association ........................................................................................................................ 39

LETTERS, STATEMENTS, ETC., SUBMITTED FOR THE HEARING 

Richard J. Hodes, M.D.: Prepared statement ........................................................ 8

Mr. George Vradenburg: Prepared statement ....................................................... 30

Mr. Harry Johns: Prepared statement ................................................................... 42

APPENDIX 

Hearing notice .......................................................................................................... 56

Hearing minutes ...................................................................................................... 57

Written responses from Richard J. Hodes, M.D., to questions submitted for 

the record by the Honorable Christopher H. Smith, a Representative in 

Congress from the State of New Jersey, and chairman, Subcommittee on 

Africa, Global Health, Global Human Rights, and International Organizations ....................................................................................................................... 58

The Honorable Christopher H. Smith: G8 Dementia Summit Declaration and 

Communique submitted for the record ............................................................... 62

(1)

A REPORT ON THE G8 DEMENTIA SUMMIT 

WEDNESDAY, JANUARY 15, 2014

HOUSE OF REPRESENTATIVES,

SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH,

GLOBAL HUMAN RIGHTS, AND INTERNATIONAL ORGANIZATIONS,

COMMITTEE ON FOREIGN AFFAIRS,

Washington, DC. 

The subcommittee met, pursuant to notice, at 2 o’clock p.m., in 

room 2200 Rayburn House Office Building, Hon. Christopher H. 

Smith (chairman of the subcommittee) presiding. 

Mr. SMITH. The subcommittee will come to order. And we will be 

joined shortly by some of my colleagues, but I thought I would start 

because of the delay. And, Dr. Hodes, I want to apologize to you 

and the other witnesses and everyone here for that delay. We did 

have two votes, and such is life on Capitol Hill. So thank you again 

for your patience. I do appreciate that. 

On December 11th, the G8 convened a dementia summit in London to examine and presumably harmonize the various national action plans on the growing international crisis of Alzheimer’s and 

other forms of dementia. The outcome appears to indicate a coalescing around the U.S. plan to make significant headway on addressing dementia by 2025, which would have significant implications globally, particularly in low- and middle-income countries 

where increasing aging populations and numbers of people with dementia strain limited resources. 

On January 4th, 2011, President Obama signed into law the National Alzheimer’s Project Act, or NAPA, requiring the Secretary of 

the Health and Human Services to establish a National Alzheimer’s Project. Among other provisions of that law, the administration was mandated to create and maintain an integrated national plan to overcome Alzheimer’s disease; coordinate Alzheimer’s 

disease research and services across all Federal agencies; accelerate the development of treatments that would prevent, halt, or 

reverse the course of Alzheimer’s disease; improve early diagnosis 

and coordination of care and treatment of Alzheimer’s disease; improve outcomes for ethnic and racial minority populations that are 

at higher risk for Alzheimer’s disease; and coordinate with international bodies to fight Alzheimer’s globally. 

That congressionally mandated plan apparently found favor with 

the G8 which endorsed that plan as being comprehensive and forward-looking. But even before the summit, the U.S. national plan 

on Alzheimer’s led nearly a dozen other nations to adopt their own 

national strategies. According to the testimony at this subVerDate 0ct 09 2002 10:48 Jul 17, 2014 Jkt 000000 PO 00000 Frm 00005 Fmt 6633 Sfmt 6633 F:\WORK\_AGH\011514\86299 SHIRL
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committee on November 21st at the pre-summit hearing, this comprehensive approach is vital to meeting what is a looming global 

health crisis. 

The World Health Organization and Alzheimer’s Disease International’s 2012 dementia report estimates that there were 35.6 million people with dementia, including Alzheimer’s disease, worldwide in 2010. This number is projected to nearly double every 20 

years, increasing to 65.7 million in 2030 and 115.4 million in 2050. 

The global cost of this condition totaled $604 billion in 2010, according to Alzheimer’s Disease International. To put this figure in 

context, Alzheimer’s cost would equal the gross domestic product of 

the 18th place country in the world ranked by GDP. 

While other G8 countries may pledge funding to address Alzheimer’s and other forms of dementia in the developing world, we 

are facing an impending global health crisis over Alzheimer’s and 

other forms of dementia. The 2014 Federal budget request for U.S.-

funded global health programs was $8.3 billion. The focus is on 

achieving an AIDS-free generation and ending preventable child 

and maternal deaths through the administration’s Global Health 

Initiative. Under this budget, maternal and child health would receive $680 million, malaria $670 million, TB programs $191 million, and neglected tropical disease programs $85 million. Pandemic influenza and other emerging threats would receive $47 million. 

WHO estimates that more than half of global dementia cases are 

in low- and middle-income countries where cases are projected to 

explode. Across Asia, Latin America, and Africa these developing 

countries are expected to see rapid growth in dementia cases over 

the next several decades. In 2010, roughly 53 percent of dementia 

cases were in low- and middle-income countries. By 2050, WHO expects 70 percent of all cases to be found in those countries. So how 

will this impact our foreign aid portfolio, especially as regards global health funding? 

We need to better understand the level of international cooperation our Government can expect in the search for early detection 

techniques, prevention, and treatment of Alzheimer’s and other 

forms of dementia. There has been collaboration among scientists 

across borders on HIV/AIDS, but how much can we expect on the 

various forms of dementia? Many countries in the developing world 

don’t even have surveillance adequate to provide reliable statistics 

on the incidence of Alzheimer’s and other forms of dementia. Given 

the negative impact of the brain drain, they may not be able to be 

the active, effective partners we need them to be in this area. However, without their help, it will be difficult to even formulate programs to help such nations cope with this growing health threat. 

These are questions we hope to have addressed, if not answered, 

at today’s hearing. The administration was unable to participate at 

the subcommittee’s November 21st hearing, but we have the head 

of the National Institute on Aging to provide the administration’s 

view on what the summit produced. We are also joined by two representatives from the NGO community, both with long and distinguished careers and advocacy efforts that have really made a difference, who also participated in the London summit to give us a 

private sector view of those proceedings. 

3

We will need more than rhetoric to deal with this crisis. As more 

of us live longer worldwide, the threat of developing Alzheimer’s or 

some other form of dementia grows exponentially. We cannot afford 

to have a robust domestic program to fight this condition and find 

that our international efforts are undermined by the failure of 

other donors to play their proper role in this effort. 

I would like to now yield to my good friend and colleague Ms. 

Bass for any opening comments that she might have. 

Ms. BASS. Thank you, Chairman Smith, once again, for your 

leadership of this subcommittee and for holding this hearing which 

is of importance to all of us. I also want to thank our witnesses this 

afternoon and applaud them for their ongoing contribution to the 

U.S. leadership and robust global engagement in this field. 

I am struck by the number of people worldwide who are currently living with dementia, which I understand ranges from 36 

million to some 44 million people, many of whom live in the developing world. The fact that the United States is engaged with other 

nations in addressing the challenges of dementia is therefore highly encouraging to me as a legislator and speaks to the common goal 

needed to resolve the medical conundrum that is dementia. 

I believe it is fair to say that here in the U.S. all of us have been 

touched by stories of families—I know I certainly have—friends 

and neighbors caring for elderly relatives diagnosed with dementia. 

Many of these caregivers could not have done so without the tireless support of professional health workers and caregiver support 

groups. Such is the devastating impact of dementia. All of us wait 

in anticipation for a cure. 

At this time I want to thank—I know my colleague Congresswoman Maxine Waters will be attending soon. I want to thank her 

for her leadership on this issue as she serves as the co-chair of the 

congressional caucus on dementia. Representative Waters has 

kindly agreed to address this hearing today in my stead. And I 

know both of you, you were co-chairs because I believe you founded 

the caucus on dementia. 

Mr. SMITH. Ed Markey did, but he asked me to join him. 

Ms. BASS. Oh wonderful. Well, I know that Representative Waters will be joining us soon and I will get information from the two 

of you when it is over. So thank you very much. 

Mr. SMITH. Thank you so very much, Ms. Bass. 

I would like to now introduce our very distinguished first witness, and without objection I would ask unanimous consent that 

the G8 dementia summit declaration as well as the summit communique be made a part of the record. 

Dr. Richard Hodes, if you don’t mind, Doctor, I would like to wait 

another minute because I know three or four other members are 

on their way and I would hate them to miss your testimony, if that 

is okay with you. So we will stand in a very, very brief recess because I know there are at least three members that are on their 

way. 

[Recess.] 

Mr. SMITH. I would like to yield to the co-chair of the Alzheimer’s 

caucus, my good friend and colleague, Congresswoman Maxine Waters, from California. 

4

Ms. WATERS. I would like to thank Chairman Chris Smith, the 

co-chair of the Congressional Task Force on Alzheimer’s Disease, as 

well as Ranking Member Karen Bass, for organizing this hearing 

and inviting me here to participate. As the Democratic co-chair of 

the Task Force on Alzheimer’s Disease, I know how devastating 

Alzheimer’s and other forms of dementia can be for individuals and 

families. As populations age, more individuals are likely to be affected by Alzheimer’s and other forms of dementia. According to 

the World Health Organization, Alzheimer’s disease is the most 

common form of dementia accounting for 60 to 70 percent of the dementia cases worldwide. 

Here in the United States Alzheimer’s disease is the sixth leading cause of death and it affects over 5 million American families. 

One in nine Americans age 65 and older has Alzheimer’s, and one 

in three Americans age 85 and older suffers from this disease. The 

Alzheimer’s Association estimates that more than 7 million Americans over age 65 will have Alzheimer’s by the year 2025. Every 68 

seconds another person in the United States develops Alzheimer’s. 

Caregiving for dementia patients is especially difficult. More 

than 15 million Americans provide unpaid care for a person with 

Alzheimer’s disease or another form of dementia. Caregivers include spouses, children, and grandchildren. Caregivers face a variety of challenges ranging from assisting patients with feeding, 

bathing, and dressing to helping them to take their medications, 

managing their finances, and making legal decisions. 

Alzheimer’s and other forms of dementia present growing challenges not just in the United States but also in many countries 

around the world. According to data compiled by the Congressional 

Research Service, more than 35 million people worldwide suffered 

from dementia in 2010. By the year 2050 that number is expected 

to more than triple to over 150 million people. The World Health 

Organization estimates that more than half of global dementia 

cases are in low- and middle-income countries. The Congressional 

Research Service projected that by 2050 about 9 million people in 

Africa, 16 million people in Latin America, 29 million people in 

South and Southeast Asia and 31 million in East Asia will suffer 

from dementia. 

Alzheimer’s disease and other dementias present special challenges in low- and middle-income countries. In high-income countries like the United States, institutions and programs like Medicare, Medicaid, nursing homes, adult day care, and other social 

services provide critical support to dementia patients, their families 

and caregivers. However, in most low- and middle-income countries, public medical and social services for people with dementia 

are rare. Consequently, care for individuals with dementia in these 

countries is almost exclusively the responsibility of their families. 

The G8 dementia summit brought together national leaders from 

the United States, the United Kingdom, France, Canada, Germany, 

Italy, Japan, and Russia to discuss a coordinated international response to dementia. I look forward to hearing from the witnesses 

about their experiences at the summit. I am especially interested 

in plans to coordinate efforts to enhance dementia research, treatment, and caregiver support activities. I am also interested in 

plans to work with low- and middle-income countries to prepare 

5

them to respond to the needs of growing numbers of families affected by dementia. 

Once again I would like to thank my colleagues, Chairman Smith 

and Ranking Member Bass, and I yield back the balance of my 

time. 

Mr. SMITH. Thank you so much, Ms. Waters. 

I would like to now introduce Dr. Hodes. And I know that others 

will join us shortly, at least they told us they would. He is the director of the National Institute on Aging at the National Institutes 

of Health. A leading immunologist, Dr. Hodes was named director 

of NIA in 1993 to oversee studies of the basic clinical, epidemiological, and social aspects of aging. Dr. Hodes has devoted his tenure 

to the development of a strong, diverse, and balanced approach to 

research focusing on the genetics and biology of aging, basic and 

clinical studies aimed at reducing disease and disability including 

Alzheimer’s disease and age-related cognitive change, and investigation of behavioral and social aspects of aging. 

STATEMENT OF RICHARD J. HODES, M.D., DIRECTOR, NATIONAL INSTITUTE ON AGING, NATIONAL INSTITUTES OF 

HEALTH, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Dr. HODES. Thank you, Chairman Smith and Congress. Thank 

you very much for the opportunity to speak with you. What I will 

try to do is provide a background of the challenge we currently face 

in terms of a needy world and the accompanying challenges of cognitive change and Alzheimer’s disease, and in particular the way 

in which the recent summit in London of the G8 helped to reinforce 

international effort and collaboration toward that end. May I have 

the next slide, please. 

This is just a dramatic illustration of what has happened to the 

demographics, the age profile of the world. It just a global statistic 

showing here from 1950 to the present. And you can see the 1950 

at the left. That upper curve began showing that the world’s population under 5 was some 14 percent or so of the world’s population. 

The lower line, which is very low in 1950, is the proportion of people over 65, and you can see that is down around 5 percent. There 

has been a remarkable change in these proportions over time so 

that somewhere within this decade for the first time in human history there will be more individuals over 65 than there are children 

under five. And those curves will keep on happening so by 2040 

and 2050 we will have larger and larger proportions of the population at risk for diseases such as Alzheimer’s, and notably, we 

talked about the challenge societally, fewer and fewer individuals 

at younger ages capable of providing the kind of care that is currently provided informally by family members in large proportion. 

The next slide is last year’s very careful study of the cost of Alzheimer’s disease in the United States. In 2010, the first bar, illustrates the direct medical care costs over $100 billion. The next two 

bars, minimum and maximum estimates of informal care costs, giving a total cost, interestingly, that is in excess of what we currently 

pay for cardiovascular disease or cancer and with the trends, is 

projected to continue as you see here in 2040 as the number of people at risk for Alzheimer’s increases. The next slide. 

6

On that background is noted a very important event, was the 

passage of the National Alzheimer’s Project Act which mandated a 

national plan. The goals of the plan are illustrated here. The first 

one highlighted is the prevention and effective treatment of Alzheimer’s disease by 2025, toward which we have focused public and 

scientific input to the formulation of a number of goals and benchmarks. The other targeted goals refer to optimized care and quality, patient support, enhanced public awareness, and then tracking 

improvement along these lines. 

And the next slide is an illustration of the goals that came 

through in the communique and declaration from the G8 summit, 

notably with very strong overlapping consistency with the goals espoused in the U.S. plan. An ambitious goal here of again the 2025 

target for identifying a cure or disease modifying intervention or 

therapy. So a very important event, I think, was the coalescence of 

international opinion behind this goal and a commitment to do all 

that is necessary in order to achieve it. And the next slide. 

Importantly, in order to achieve it is the sharing of information 

to allow the coordination of efforts. And in the next slide, an example of the very real measures that are now in place to help international collaborations of this particular effort, one which was the 

outcome of a collaboration between the Alzheimer’s Association and 

the National Institute on Aging which established an ontology of a 

way to categorize all of the research that is supported internationally for Alzheimer’s-related research. It is a database which allows 

investigators, nations, planners and funders to understand current 

cross-sectional and trends in research and to maximize the opportunities therefore for filling gaps and for maximizing collaboration. 

At the G8 summit itself there was a commitment to the G8 nations 

to participate even more fully in the establishment of this database 

and its use and coordinating research activities. 

Next slide. To illustrate some of the ways in which broad, organized programs of international collaboration around Alzheimer’s 

disease are currently in place, and I will just show you three examples. This is one that was based on the Health and Retirement 

Study, a U.S. study that looked at population of retirement age and 

beyond, looked at variables of health, family structure, economics, 

and so it became a population-based study for understanding the 

risks and effect, the incidence over time, trends and cognitive 

change in Alzheimer’s disease, the family and caregiver situations 

involved in these populations, and importantly has provided a template then for international efforts across the world, indicated by 

the map here, so that a large proportion of the world’s population 

on all continents now is engaged in studies through largely NIH 

support, at least the level of catalyzing these studies with coherent 

and harmonized measures so that we can begin to understand 

worldwide the incidence, the challenge, the societal and economic 

context in which dementia will occur over years to come. 

The next slide is an example of another international effort, 

ADNI. This is the Alzheimer’s Disease Neuroimaging Initiative, a 

really landmark public-private partnership in which the U.S. public 

support through the National Institutes of Health along with private sector and involvement both from pharma, from imaging, from 

biotech, has set out to understand the early changes that occur in 

7

Alzheimer’s disease to allow intervention at early stage, well before 

symptoms, where there is the best chance to achieve an outcome. 

The fact that you see reflected here worldwide is that having established this in the United States with the very important leadership 

of the Alzheimer’s Association again, worldwide ADNI now has in 

all the nations, parts of the world illustrated here, parallel efforts. 

The same studies go on to measure, combine the power of the 

measurements on many people to test whether the course and 

characteristics of Alzheimer’s is the same in the United States as 

well as worldwide, another effort to try to synchronize and harmonize worldwide efforts. 

And finally in a third example, the next slide, one area where 

enormous progress has been made is in genetic discoveries. In the 

last year alone there was a doubling of the number of known genetic risk factors, feasible only through international collaborations 

involving large numbers of people in all of the nations shown here. 

So yet another example of understanding whether the disease and 

its genetics are similar worldwide, and recruiting experts worldwide into this collaborative effort. The next slide. 

So there will, in terms of the most concrete mechanism of followup from the summit, be a series of legacy meetings. The UK will 

host one on social impact investment, Japan on new care and prevention models, Canada and France on academia-industry partnerships, although all nations will be participating in these. And announced and accepted at the G8 summit was the U.S. leadership 

in a meeting which will occur in February 2015 in association with 

an international summit on Alzheimer’s research which will convene the broad international community to coordinate efforts that 

may come forward from that meeting of experts and scientists. The 

next slide please. 

And just a reminder of that summit, February 2015, this will repeat the summit that was held in 2012 in terms of its format. It 

will bring national and international experts together to establish 

priorities for Alzheimer’s research, and as noted will have the very 

particular feature of a session which will involve leadership from 

international funders and supporters of Alzheimer’s research to assure the best coordination of efforts. 

I thank you for the opportunity to speak and would be happy to 

address any questions you might have. 

[The prepared statement of Dr. Hodes follows:]

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Mr. SMITH. Dr. Hodes, thank you very much for your testimony 

and for your leadership. Let me ask you a few opening questions 

and then I will yield to my colleagues for any questions they might 

have. 

In reading the action plan, and you talked about it in your testimony, your written testimony as well, it does talk about, and you 

mentioned it, the three venues that will be held, Japan-led, UK-led 

and Canada and French-led. Are there dates yet for those? 

Dr. HODES. I am not aware of fixed dates. 

Mr. SMITH. You also note in the action plan it calls upon WHO 

and OECD to identify dementia as an increasing threat to global 

health. Now as we all know, the director general of WHO was 

there, Dr. Chan. And I am wondering, have they been? Has WHO 

made this a serious part of their portfolio or are they on the threshold of doing so? Because they have done some reports in the past 

and I have certainly read them and I know you——

Dr. HODES. I do not know further of any action taken by WHO 

since that important statement at the G8 summit. 

Mr. SMITH. Okay. So that will be an ongoing case of advocacy on 

our part to ensure that——

Dr. HODES. Certainly we will play a role as we do in WHO affairs, yes. 

Mr. SMITH. Now in the list of action items it talks about the UK 

establishing a new global envoy for dementia innovation. I wasn’t 

sure what that was. I looked and I am not sure. How do you define 

that? Or how do they define it? 

Dr. HODES. The intent here as best I understand it is that the 

UK will identify an envoy whose responsibility will be to attempt 

to correlate public-private international partnerships toward a common fund of resources in support of Alzheimer’s research. And I 

think that outline is the extent of the notion to date. The UK will 

appoint. The rest of the nations were in full agreement with there 

being such an individual to take the lead in collaborating international public-private partnerships. 

Mr. SMITH. We were all thrilled that the G8 is doing this and 

that the UK initiated it, but I am wondering if there are any 

thoughts to expand it to the G20 and then by extension to the rest 

of the world—Brazil, China, India, Mexico, South Africa—large 

populations obviously with large numbers, increasingly large numbers of dementia cases who make up G20 but not G8. Is there an 

effort to try to bring them into the fold? 

Dr. HODES. Absolutely. As you saw in some of the examples that 

I cited there was international representation far beyond the G8. 

Our plans for the G8 legacy meeting, in fact, will call for invitations far beyond G8, and there are many more nations in that, currently involved in Alzheimer’s research who are being asked to contribute to this ontology database that I mentioned. But without 

question, G8 was a very important set of leadership nations but all 

of our international efforts will extend far beyond that for broader 

international partnerships. 

Mr. SMITH. One of the bullets in your testimony is to increase the 

number of people involved in clinical trials and studies on dementia. Obviously domestically that will include African-Americans. It 

will include all people from every ethnic group in all of the G8 

18

countries. But is there any effort to try to include Africans and 

those who might not usually be part of these trials? Because we 

have been noticing, especially where longevity is now becoming a 

positive statistic, people are living longer obviously, that we are 

going to see a huge epidemic of dementia, for want of a better 

word, in places like Africa, with a decreased ability to cope with it. 

Dr. HODES. The challenge, if I can summarize it quickly, in carrying out the kinds of intervention, clinical trials which are currently happening is that the greatest emphasis is on analyzing people who are at high risk for disease long before there are symptoms 

of the disease, and tracking biomarkers such as through brain and 

neuroimaging, genetic analysis and so on. It is currently challenging to do these kinds of studies tracking such markers in nations that do not have the infrastructure for that kind of imaging. 

The way in which we are trying to do it though is illustrated in 

one study that attempted to maximize this. This is a study looking 

at individuals with early onset of genetically determined Alzheimer’s disease. Due to specific mutation they have brain changes 

detectable decades before they have disease. There is the largest familial cohort of these in the South American country of Colombia 

which is relatively less developed in terms of its biomedical research infrastructure. 

So in this case, NIH, together with partners are supporting studies in which those individuals will be studied both through establishing capacity in Colombia and through travel to the U.S., as one 

of the examples I can cite in which a generally less well developed 

country can be supported for research, as demanding as it is, in 

cases where this is particularly important to the research effort. 

Mr. SMITH. You testified that the international genomic Alzheimer’s project has discovered 11 new genes connected with the 

condition. How will these discoveries advance identification, prevention and treatment of Alzheimer’s, and with the collaboration 

that now has gone into a much greater area of cooperation, have 

we already seen some things that we were not aware of coming out 

of some of the other countries that are part of this initiative? Are 

we saying, hey, we didn’t know that, give us the information on 

that? 

Dr. HODES. Well, in fact, the information that led to the description of these 11 new genes came only when we were able to look 

at enough subjects with and without disease that could be provided 

by international investigators. No single country, no single population of available data had the power to identify these new genes. 

You asked the very important question about what happens next 

once we identify genes as risk factors. An important observation of 

the genes described so far is that they tend to fall into families or 

pathways. Many of them are related, for example, to inflammation, 

others to transport of membranes. 

When we have these clues, this drives the next generation of research which looks at ability to intervene and change the variables 

that are determined by these genetic risk factors and to look for 

clues that these are targets then for eventual clinical intervention. 

This is a difficult and challenging road, but each one of these new 

genes and gene pathways we identify provides a new potential target for next efforts at intervention. 

19

Mr. SMITH. Let me just ask you one final question with regards 

to money. Are we appropriating sufficient amounts of money for research for Alzheimer’s and are the other countries doing likewise? 

It seems to me that one of the greatest models we have is PEPFAR 

because the United States led and other countries did indeed follow 

and now the whole world is on the same page trying to mitigate 

the scourge of HIV/AIDS. And I am wondering if this G8 summit 

was the catalyst and whether or not we do indeed have a Manhattan-type mindset to really eradicate or at least find a therapy for 

dementia by 2025. 

Dr. HODES. Well, I think it is certainly clear that the scientific 

opportunities that we have before us in areas of Alzheimer’s research are vast and that the current fiscal constraints that we have 

are without question providing an important determinant in what 

research we can carry forward. We are gratified by the additional 

funding in 2012 and 2013 which added to our ability to carry out 

important studies. We are hopeful that there will similarly be an 

increase in funding available. The scientific opportunities, I think 

it is fair to say, in direct answer to your question, far exceed our 

current ability to fund all of the meritorious ideas, and we remain 

committed, understanding the reality of fiscal limitations, to doing 

the very best we can with resources available. 

Mr. SMITH. I know it is perhaps a difficult question for you to 

answer, but could you give us any kind of sense of how many laudable projects fall off the table because they cannot be funded because there is insufficient funding? 

Dr. HODES. I can give you just an overview in the sense that currently at NIA for Alzheimer’s research, as for all of NIH, the success rate for applications is in the range of 15 percent, of all applications received. I think there is wide agreement that meritorious, 

outstanding applications are fairly uniform through nearly double 

that amount. So one could safely say if we did no more than fund 

all the meritorious applications that we have before us, even without taking measures to more actively solicit additional applications, 

that we could fund twice as much research as we are currently able 

with the resources in hand. 

Mr. SMITH. Do you have hope that the G8 summit will produce 

a catalyzing effect? We saw with HIV/AIDS, once the bidding war 

in a positive sense started, countries began to step up to the plate. 

The Global Fund swung into action, and in every aspect it was like, 

we are going to resolve this. We are going to stop this pandemic, 

as Henry Hyde called it, the prime sponsor of the PEPFAR program, he called it the black death of modern times. And it wasn’t 

until that started that we moved into a situation where real resources were being brought to bear. Do you think the G8 summit 

may have that consequence? 

Dr. HODES. I think what I can say comfortably is that we have 

an enormous responsibility to show in the abstract and also in specifics that there are scientific opportunities before us that are likely 

to provide the kind of progress necessary to achieve this goal of 

intervention here by 2025. I think that the G8 summit was a landmark in that it brought together scientists who could make the 

very specific case with specific plans underlying those aspirations, 

and that this was embraced as you saw by the common goal across 

20

nations, having met, I think, the important obligation to show that 

there is a real plan in hand with a rational approach to conducting 

research that will take us to the goal in mind. 

I think we now stand and are hopeful that policy makers will 

take maximum advantage of the information we can provide, ask 

us to provide more than we can and leave to your hands what we 

hope will be a translation of these opportunities into research and 

real progress toward that goal and timeline. 

Mr. SMITH. Thank you, Dr. Hodes. 

Mr. Weber? 

Mr. WEBER. Gosh, I don’t know where to start. Dr. Hodes, you 

said in Colombia you all had identified, was it the largest biofamilial group? 

Dr. HODES. Yes. 

Mr. WEBER. Okay. 

Dr. HODES. So there were discoveries in the 1990s which uncovered a very rare but tragic and informative population in which a 

mutation in a single gene, actually one of three different genes, 

caused Alzheimer’s disease in anyone who inherited that disease, 

Mendelian Inheritance so-called, 50 percent of the offspring of 

somebody with that gene would have the gene. If you have the 

gene, 100 percent certainty of getting the disease age 50s, 40s, even 

30s. One such large family exists in Colombia. It is known exactly 

what the mutation is in those individuals. 

It is known that if you look at people with no sign of disease at 

all and do brain scans in their 30s, that individuals who have not 

inherited the gene all have a normal, if you will, brain scan and 

particularly without evidence of amyloid plaques. But the individuals who were in their 30s, who were not destined to have Alzheimer’s disease for another 15 or 20 years but who have the gene, 

already show clear abnormalities in their brain scans. This means 

there is an opportunity to try to intervene with treatments before 

potentially irreparable damage has been done to the brain, long before symptoms by using experimental treatments and tracking the 

biomarkers, like brain scans, to see if these treatments are effective. Because this is such a large population, it is an enormous scientific opportunity. It is also a population as you can imagine just 

desperate to be a part of a search for a goal. 

So in collaboration with investigators in the United States and 

in Colombia, with support from private sector as well as NIH, these 

individuals will be studied for interventions beginning, years to a 

couple of decades, before they actually develop disease to see if we 

can make progress in arresting the underlying pathology of Alzheimer’s disease. 

Mr. WEBER. Okay, you said a large group. Is that, and you may 

not know the exact numbers, I mean is it 5,000, 20,000, 150,000? 

Dr. HODES. The number of people in these families is in the 

range of 3,000. Approximately 500 will be studied. 

Mr. WEBER. Okay. And then you said, the chairman said, and I 

came in late so forgive me, I didn’t hear all of your testimony, but 

you discovered 11 new genes? 

Dr. HODES. Yes. New genes that are risk factors for Alzheimer’s 

disease. And important to distinguish the kinds of genes we just 

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nately, tragically, have Alzheimer’s disease if you inherit that gene. 

These are real Alzheimer’s causal genes. All the rest of the genes 

we talk about are risk factors. That means if you have the bad variant, the bad allele of that gene, your probability of having Alzheimer’s disease increased. It is not 100 percent, but it is a signal 

that something about that gene is involved in the process of Alzheimer’s disease. 

Mr. WEBER. So these are not new genes, we have just discovered 

the link to Alzheimer’s. 

Dr. HODES. That is fair enough to say. 

Mr. WEBER. Right. 

Dr. HODES. Since the solving of the human genome all the genes 

are there, you’re exactly right. What has been done is to show that 

these are linked to Alzheimer’s disease. 

Mr. WEBER. How many is that? Ninth grade physical science for 

me was way too far back. How many genes are there? 

Dr. HODES. In the range of 25,000. 

Mr. WEBER. 25,000, okay. So how do you intervene and change 

an individual who has inherited these genes? Does it take diet? I 

mean, how does that work? 

Dr. HODES. Well, just as an example of the kind of logic that is 

followed, if one finds that a number of these genes seem to be in 

pathways for inflammation and if there is evidence as there is that 

inflammation may play a role in the brain of those with Alzheimer’s disease, one takes this and uses it to design interventions 

that may, for example, decrease or modify inflammation in the 

brain to see if this will have a positive effect on the course of disease. So it isn’t necessarily a sign that that person with that variant is the only one for whom that intervention makes sense, it is 

saying that the pathway involved in Alzheimer’s is identified by 

these variants and mutations and it is those pathways which then 

become the target for experimental interventions. 

Mr. WEBER. Are all the other countries involved in this, are they, 

and I hate to use the word co-equal partners based on population, 

but how do we measure their seriousness, like the chairman asked? 

There has not been enough money. How do we get them to the 

table? 

Dr. HODES. Well, in some specific cases, such as the example of 

genetics, there are clear and strong international collaborations already. In terms of having the full scope of international collaboration in Alzheimer’s research, one of the initiatives that we mentioned, an international Alzheimer’s research database that was 

generated by NIA in collaboration with the Alzheimer’s Association 

is in the process of compiling all of the research supported nationally, internationally, by government and private and philanthropic 

agencies. 

This, for the first time, provides an opportunity to go online and 

ask any of the questions that you would like to for a given nation, 

a given organization, and a given area of research would change 

over time what is the level of support to many purposes. One is to 

address perhaps the question you have asked about the distribution of support internationally, but even at the level of the individual scientist or funder, want to go on to see if there are gaps, 

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developed. And to look at this across nations and even coordinate 

the efforts of nations to invest with the same database, the same 

understanding of where we stand now and what the needs are. 

Mr. WEBER. And part of your comments, you said we are interested in learning from other countries’ successes. And so I guess 

my question is, are we? 

Dr. HODES. I think there are categories of research carried out 

in an individual laboratory which then become internationally 

shared and inform all of us. So in that respect some of the discoveries of genes or underlying processes, whichever country they 

arise in, are communicated internationally and inform all of us. 

And this is one of the important commitments and it came out of 

G8 as well, to enforce or inform a culture of data sharing so that 

when information is made available it is made available as quickly 

as possible to all nations. 

In the area of the underlying basic biology of Alzheimer’s disease 

we look at diverse populations to see if there are differences in risk 

factors across countries. These do inform all of us. I think in that 

respect we are learning by international comparisons. For example, 

there are two that I can cite. There was one study that was called 

the Indianapolis-Ibaden study. African-Americans of Nigerian descent from around the area of Ibadan compared to residents in 

Ibadan for genetic and clinical manifestations of Alzheimer’s disease have revealed different influences of genes in environment. 

Similar study looking at Japanese immigrants to Hawaii and comparing with their Japanese populations who remain in Hawaii. 

So these are some of the examples by which we can learn the effects of environment and their influence on genetic predispositions 

or protective factors as well. I think these areas of research, and 

these are only examples, do provide the positive answer that yes, 

we learn from the experiences internationally. In terms of the 

health and retirement survey which I mentioned, we are just beginning now to have the capacity to look in countries internationally at their health status, their incidence of new cases of Alzheimer’s disease, their relationship to family structure, how care is 

being provided. 

This is the first step in learning from one another and learning 

lessons to even have that information, but in recent years, as that 

particular map that I illustrated showed, we are making enormous 

progress in having studies that are interpretable in a similar and 

common way across countries both developed and developing internationally. 

Mr. WEBER. And how is that information shared? Is it done 

through summits, through publications quarterly, through emails 

instantly? How is that information shared? 

Dr. HODES. Yes, I mean all of the above. And perhaps some of 

the more organized examples that we provide are in the databases 

that I mentioned. Easy to see in genetics, for example. So in 2012 

as part of the Presidential initiative and enhanced support for Alzheimer’s disease, there was money committed to sequencing the 

genomes of people with Alzheimer’s disease and control people who 

did not have Alzheimer’s. The sequencing, the DNAs collected, the 

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pleted, they are posted in an international database. The first 

group announced in December. The next in a month or two. 

So they are instantly, these data, instantly available and announced as such to the scientific communities. This is a prototype 

of the way we attempt to not only have the data available as quickly as possible, but in a place where people know to look for it and 

where the ability to manipulate those data is maximized. 

Mr. WEBER. And is there a parallel track for independent companies, drug research companies? Are they at the same time racing 

to discover this at the same time? 

Dr. HODES. Oh, there are areas of research in which there is a 

great deal of competition. Certainly the drug companies are doing 

some things independent of, for example, Federal NIH efforts, but 

some of the large prevention trials which are being funded in the 

last year or two with current and enhanced U.S. funds from and 

through NIH have important collaborations and co-funding by industry. This is most obvious in the cases of course where there is 

an intervention of something that is proprietary. 

But the Alzheimer’s Disease Neuroimaging Initiative, a very 

large initiative designed to identify the earliest changes in Alzheimer’s disease—brain images, biomarkers—is being supported by 

extensive contribution from industry, NIH. All of that with no selective advantage to anyone, the data become immediately available and posted to all. It is perceived by all involved to be of such 

advantage to both private sector and public that this common good 

and goal, has to the credit of all, I think, led to essentially instant 

access to these data. 

Mr. WEBER. Okay, I think I have exhausted my pea brain. Okay. 

Mr. SMITH. Dr. Hodes, just a couple of final questions. The point 

of developing an international action plan for research, what does 

that look like and who would take the lead? Is that a WHO lead 

or is that a U.S. lead? Will there be people actually tasked for research or it will be just a broad-brush set of bullets on a piece of 

paper? And secondly, are existing U.S. resources sufficient to implement these goals since there will be a great deal of sharing and 

collaborating? You answered the question about research dollars, 

but what about to implement this new global summit agenda? 

Dr. HODES. So just to outline the way in which the research 

agenda in the United States has been developed or presented, we 

recognized with the national plan an enhanced need to bring to 

bear the best of international expertise in deciding priorities and 

strategies in order to pursue these research areas. This was done 

in a summit in May 2012 and there were some 500 participants. 

The outcome was a series of recommendations by this international 

group of experts as to where the priorities lay. 

Those priorities and goals were translated into milestones, what 

it would take to achieve them, what kind of research on what 

schedule. This has all been shared with the national and international research community and we are in the midst of tracking 

progress toward them, funding and supporting that research as 

best as we are able. Currently, international funders have access 

to the same information. Through the efforts of NIA in collaboration with the Alzheimer’s Association we are convening annual 

meetings and more frequent than that, teleconferences, of interVerDate 0ct 09 2002 10:48 Jul 17, 2014 Jkt 000000 PO 00000 Frm 00027 Fmt 6633 Sfmt 6633 F:\WORK\_AGH\011514\86299 SHIRL
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national funders of Alzheimer’s research trying to invite and encourage common planning around these milestones. 

So I think a well-developed, evidence-based plan with targets, 

goals, milestones developed through the U.S. to the degree to which 

this can be implemented at an international level, I think we will 

see in some of these meetings to come are able to muster international support behind them. So the process, I think, is there. The 

international collaboration remains, I think, to be optimized, but I 

think the will has been expressed at G8 and subsequently in a very 

positive sense. 

And the way in which the resources of all of these countries 

might contribute to this common plan and achieving these common 

milestones is exactly the kind of planning that one would like to 

see. It has not yet occurred. Again, I think the G8 is a step toward 

expressing international will, not just by the G8 nations but then 

they as emblematic of a broader international community to converge on common goals. 

Mr. SMITH. Thank you. Dr. Hodes, I have some additional questions but I will submit them for the record and I know other members will as well. So thank you so much for your leadership and 

for your testimony today. 

I would like to now ask Mr. George Vradenburg who is the chairman and cofounder of USAgainstAlzheimer’s, an education advocacy campaign committed to mobilizing America to stop Alzheimer’s, and convener of the Global CEO Initiative on Alzheimer’s. 

He also directs Leaders Engaged on Alzheimer’s Disease, a coalition of Alzheimer’s-serving organizations. Through the Vradenburg 

Foundation he has supported the Alzheimer’s Disease International 

World Alzheimer’s Reports and the NIH global Alzheimer’s Research Summit. He has been named by the Secretary of Health and 

Human Services to serve on the National Alzheimer’s Advisory 

Council to advise on the first of a kind national strategic plan. And 

prior to December 2003 he held several senior executive positions 

in a large media of companies. 

We will then hear from Mr. Harry Johns who became president 

and chief executive officer of the Alzheimer’s Association in 2005. 

He has worked to build momentum for the cause by working to increase awareness and understanding of Alzheimer’s, emphasizing 

progress through clinical studies, focusing on public policy and advocacy, and targeting high impact research in detection, treatment 

and prevention of Alzheimer’s. The Alzheimer’s Association international conference is the world’s largest meeting on Alzheimer’s 

research. In 2011 he was appointed by the Secretary of Health and 

Human Services to the Advisory Council, and before joining Alzheimer’s, Mr. Johns spent more than 20 years with the American 

Cancer Society. 

STATEMENT OF MR. GEORGE VRADENBURG, CHAIRMAN AND 

FOUNDER, USAGAINSTALZHEIMER’S 

Mr. VRADENBURG. Thank you, Chairman Smith and Congressman Weber, and thank you for convening again this very important 

follow-up meeting to the one that you held 2 months ago just prior 

to the G8 summit. 

25

You asked at the outset, Mr. Chairman, what the private sector 

view is toward the G8 summit. And I would say that it is a potentially transformative event, potentially transformative. It set a 

global goal of stopping this disease by 2025, it set in place some 

key landmarks in terms of an international research plan and innovation platform, and it also committed to collectively and significantly raising the level of public resources devoted to research. 

Now those commitments are yet to be fulfilled, and of course one 

of our roles, or at least I see my role, is trying to press to make 

sure that those roles are fulfilled. We will have during 2014 and 

early 2015, a series of legacy workshops that will follow on, and 

each of those should be designed to set some very clear action plans 

in place that could be done at an international level so that we 

move this pile forward, not just for the 5 million Americans in the 

United States but for the now 44 million people around the world. 

Prime Minister Cameron gave a very eloquent, very passionate 

speech in which he analogized this G8 summit to the one held in 

Gleneagles by the UK several years ago which stimulated and accelerated the efforts against HIV/AIDS. So he positioned this summit precisely as you have positioned this: That is to begin to get 

the globe to attack this problem as a global problem affecting tens 

of millions of people around the country. 

Fifteen years ago, it was U.S. leadership that helped mobilize the 

global community to combat HIV/AIDS. The G8’s embrace of a goal 

to develop a cure or disease modifying therapy by 2025, which is 

the United States’ goal, signals that U.S. leadership is once again 

becoming critical to another global effort, this time to stop Alzheimer’s. Now just a word on vocabulary here. In the United 

States, we tend to call this Alzheimer’s and other dementias referring to the entire field. The rest of the world tends to call this dementia of which Alzheimer’s is a major portion. So by use of Alzheimer’s or dementia I encompass the same scope. 

As we discussed in November, the parallels between the scale 

and scope of this disease and global HIV/AIDS are striking. Shortly 

after our November hearing and just before the G8 summit, Alzheimer’s Disease International updated its prevalence figures based 

upon new studies in China, sub-Sarahan Africa and new population 

estimates from the U.N. Those estimates indicate that they now believe that 44 million people have this disease, a 22-percent delta 

over what they estimated before. And if current trends remain as 

they are, they estimate 75 million cases by 2030 and 135 million 

cases by mid-century. 

To put those in context, 44 million people with dementia is larger 

than the populations of Canada, Poland or Argentina, and 135 million projected by 2050 is a number that exceeds the population of 

Japan and nearly that of Russia, the tenth and eleventh most populous countries. Those numbers somewhat understate the impact of 

the disease since they do not account for family and other caregivers which, based upon U.S. experience, means that the total 

number of persons impacted by this disease may be three or four 

times the numbers that are actually attributed to those with Alzheimer’s themselves. 

And as you have mentioned before, perhaps equally concerning 

is the fact that 62 percent of these cases currently are in low- and 

26

middle-income countries with an estimate that it will move to 70 

percent by 2050. Think about the scale of the disease and the 

caregiving burden it will have on economic development gains 

made in global efforts against poverty and in our efforts in women’s 

empowerment since most of the caregiving burden is borne by 

women. So this is an economic development issue not just a health 

issue. 

The HIV/AIDS epidemic spurred leaders in the U.S. and the 

world to respond with a global fund to treat AIDS, tuberculosis and 

malaria as well as PEPFAR as you have already mentioned. Often 

overlooked however is Congress’ leadership in driving both of those 

programs. In the summer of 2000, Congress passed and President 

Clinton signed into law the Global AIDS and Tuberculosis Relief 

Act. That law authorized an aggressive U.S. response to HIV/AIDS 

and established the World Bank AIDS Trust Fund, among other 

things, which subsequently led to the succession of funds that we 

have today. So it was Congress’ leadership in driving this that in 

fact caused those funds to come into existence. 

What have we learned from the HIV/AIDS experience? Peter 

Piot, the former head of UNAIDS, the person responsible for driving the global effort against that disease, turning it from an epidemic to a manageable disease, calls Alzheimer’s the next great 

epidemic and a public health time bomb. With Alzheimer’s, we are 

on the verge of a humanitarian crisis that is potentially larger than 

the threat posed by HIV/AIDS. Beyond the public health challenge, 

we are also on the front edge of an economic and fiscal crisis. The 

cost of Alzheimer’s to health care and social support systems is 

huge and growing, already at more than 1 percent of global GDP. 

And Alzheimer’s is a significant driver of the growth in entitlement 

spending in the developed nations as well resulting from the rapid 

aging demographic. 

In its 2010 report entitled, Global Aging: An Irreversible Truth, 

Standard & Poor’s, who does rate sovereign debt quality, identified 

global aging as the dominant threat to global economic stability. 

Without sweeping changes to age related public spending they 

think sovereign debt will soon become unsustainable. When you 

overlay the spector of nearly 140 million persons with dementia by 

mid-century together with their caregivers, the need for a coordinated and robust action for a range of health, economic and fiscal 

reasons at the global level is apparent. 

Now the G8 dementia summit set out the basis for a global plan 

and global funding mechanisms to respond to this challenge. The 

G8 nations including the U.S. committed to identify cure or disease-modifying therapy for the disease by 2025; to increase collectively and significantly, their words, the amount of public funding 

for dementia research to reach that goal; to develop a coordinated 

international research action plan; to encourage innovation in discovery and care; to develop national incentive structures to encourage those innovations; and to report on those commitments to ensure progress is made. The UK committed to appoint a global dementia envoy which, as Dr. Hodes mentioned, is patterned on the 

fact that there were global envoys around HIV/AIDS; to stimulate 

innovation; and to coordinate international efforts to attract new 

27

sources of financing including a possible public-private and philanthropic fund to support global international action on dementia. 

The G8 ministers did commit to a series of legacy workshops in 

2014 and 2015 to assure that action plans are developed, executed, 

and have the intended effect. And I think it is the part of the 

NGOs, one of our responsibilities to ensure that those occur, that 

the action plans are developed and that we report them back to 

you, subject to your calling us again after those legacy workshops 

are held. 

I would urge this Congress to embrace the commitments by the 

G8 health ministers and to lay the foundation for an aggressive engagement by this country in a global action plan and corresponding 

global funding mechanism just as you did nearly 15 years ago for 

HIV/AIDS. Just as our national plan to address Alzheimer’s focuses 

on research, care, services and support for caregivers, so too can a 

global strategic plan. A global action plan should also set international norms for research, care, long-term support and services 

so nations can learn from each other about what is expected, what 

is possible and what mechanisms can be adapted from higher-performing nations for implementation in lower-performing nations. 

One example of what a global action plan might embrace is a reform of the clinical trial infrastructure. At the G8 summit and related follow-on events, a clear consensus emerged from industry, 

academia, and government that reforms in the clinical trial process 

would be a major step forward to reducing the time, cost, and risk 

associated with developing disease-modifying Alzheimer’s therapies. It takes far too long and costs way too much money to recruit 

and enroll patients in trials, to assemble the needed infrastructure 

anew with every drug candidate, and to conduct the trials only to 

see the hand-crafted trial infrastructure and learning for that trial 

dismantled and lost so it is not available to other drug companies 

and other drug candidates. 

Recognizing this, the Global CEO Initiative, which I convened, 

working with the New York Academy of Sciences, has made addressing this gap to develop a global Alzheimer’s clinical trial platform a top priority for 2014. Such a platform will be the type of 

groundbreaking initiative that could be supported with a global 

strategy and fund. A global funding mechanism to drive this innovation, to broaden the targets of attack on this disease and to scale 

improvements in quality care delivery is essential to drive this action plan. Low- and middle-income nations do not have the biomedical infrastructure needed to advance research but are necessarily experiencing the same humanitarian and economic costs of 

this disease, so they should contribute to a global fund even if they 

may not be able to conduct the research themselves in their own 

countries. 

One thoughtful idea put forward by Drs. Ron Petersen and Nick 

Fox, which I would recommend as well, is to ask each nation to 

contribute 1 percent of the cost of care that that society is sustaining for Alzheimer’s to research. Based upon current numbers 

that would imply a global commitment to research of about $6 billion a year. Now that sounds like a big number, but that is less 

than what we invest in the U.S. alone for cancer research. It is 

equal to the amount committed by the U.S. alone to global funds 

28

for HIV/AIDS and other infectious diseases. So we are talking 

about a global fund equal to what the United States itself is investing in cancer or investing in other global funds. 

At the present time, notwithstanding significant investments to 

research and other diseases, no individual nation or small group of 

nations appear to be willing alone to bear even the minimum level 

of investment needed to attack this disease, either because of fiscal 

constraints, internal political barriers, or to strategically 

reprioritize research investments toward Alzheimer’s innovations. 

Beyond traditional public investment, the Global CEO Initiative 

on Alzheimer’s, again working with the New York Academy of 

Sciences, is exploring innovative funding mechanisms that will attract increasing levels of private, philanthropic, social and financial 

capital to the Alzheimer’s efforts. New forms of crowd-sourcing, hybrid philanthropic and financial venture funds, and social impact 

investing models are emerging in other fields, and efforts are underway to assess their applicability to Alzheimer’s. In that regard 

we will be working with the UK and its dementia envoy among 

others. 

While these clinical trial and financing mechanisms are still in 

early development, they signal the willingness, and indeed, the eagerness of the private sector to work arm-in-arm with governments 

to address this global Alzheimer’s epidemic. And they signal the potential power of a comprehensive global action plan and fund that 

unifies the diverse stakeholders invested in finding a solution to 

this disease. Domestically, we must continue to lead the world and 

deliver on our commitments at the G8 dementia summit by aggressively implementing our own national plan and increasing the level 

of public resources to support Alzheimer’s research and other programs. 

While government budgets remain constrained, our taxpayers are already paying dearly for Alzheimer’s to the tune of $140 billion 

annually in Medicare and Medicaid costs attributable to this disease. At the same time, we spent only $500 million annually on 

Alzheimer’s research. With that in mind, I would urge Congress to 

enforce the commitments in our national plan and take two actions 

with regard to research. Build upon the increase in Alzheimer’s research included in the omnibus bill to double current levels of funding in Fiscal Year 2015. That is domestic investments. And set a 

marker consistent with the international norm I noted above of 

committing just 1 percent of the total estimated domestic cost of 

this disease to biomedical research. 

With total public and private costs in the U.S. estimated to be 

about $200 billion annually, this approach would yield the U.S. national goal of $2 billion in annual research funding, a target that 

matches the level of funding estimated by leading Alzheimer’s experts and recommended by the Advisory Council on Research, Care 

and Services as the level of public funding necessary to meet our 

2025 goal. 

Finally, I think it is worth revisiting a recommendation I and 

other members of the Advisory Council have long supported, a 

White House-level official tasked with coordinating our domestic 

and international efforts against Alzheimer’s and dementia. While 

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ability. Congress should consider creating such a position to coordinate both domestic interagency efforts, because they are not just 

HHS, they are DoD and they are VA, so they are major interagency 

efforts domestically, and to coordinate our global leadership role 

much as we did with respect to HIV/AIDS. 

Chairman Smith, Mr. Weber, I thank you again for convening 

this hearing. I urge this committee to continue its oversight focused 

on this issue and to strongly consider reaching out to additional 

parliamentarians, particularly those in other G8 member nations 

who share your strong interest in and commitment to forming a 

global working group of parliamentarians against Alzheimer’s. 

Such an alliance would support and indeed, I think, drive the work 

of government administrations in implementing the G8 commitments and expanding this effort. Thank you very much for reconvening and having me testify today. 

[The prepared statement of Mr. Vradenburg follows:]

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Mr. SMITH. Thank you so very much for that very comprehensive 

testimony and recommendations. We will follow up on it and I 

thank you for it. Your testimony is chock-full of action items for us 

and I thank you for that. 

Mr. Johns? 

STATEMENT OF MR. HARRY JOHNS, PRESIDENT AND CHIEF 

EXECUTIVE OFFICER, ALZHEIMER’S ASSOCIATION 

Mr. JOHNS Chairman Smith, Representative Weber, first of all, 

let me thank you for holding this hearing, and Chairman Smith, 

I want to thank you for your leadership over time on these issues. 

The NAPA, National Alzheimer’s Project Act, has made a huge difference already in the progress we are making on Alzheimer’s and 

your leadership on that has been really important, as well as the 

entire Congress. It is an honor to be here. It was an honor to be 

on the G8 panels to speak to those ministers, as were Francis and 

Richard Hodes. 

I just want to talk about three things very quickly in the limited 

time we have this afternoon: The G8 and the potential to advance 

the cause as a result of it; what the Alzheimer’s Association is 

doing as a nonprofit in that regard as the leader in the nonprofit 

world globally on this issue; and what the United States can do to 

advance this cause coming off of the G8 summit. We have talked 

a lot about the data, the statistics. The numbers are staggering of 

course on this. We know already that in the U.S., as you heard 

from Richard Hodes, that in fact we are going to get to the point—

it is already the most costly condition in the U.S.—where it is 

going to cost $1.2 trillion annually just for the care for this disease. 

So if you project that at all worldwide you see the kinds of outcomes that it is going to have. Right now the U.S., North America 

and Western Europe take up 70 percent of those costs, and fully 

a third here in the U.S. But that is, as you have already heard, 

going to grow dramatically across the world and in lesser-developed 

countries. 

In terms of your question about what is the impact of the G8, 

I think the G8 does have the potential to be a milestone as an 

event in the progress against this cause, against this disease. It is 

ultimately up to what we all do with what occurred at the G8 to 

determine whether or not it will be something that was small as 

a milestone or much larger. The kinds of things that were on the 

G8 communique at the end of the meeting, the 2025 goal, it is a 

little less ambitious than the 2025 goal contained in the U.S. plan 

but important nonetheless to get at what would be a cure or treatment by that 2025 date. Again, not quite as ambitious but important, and important for us to pursue on a global basis. 

The increase in research funding that is called for there is absolutely critical to all of this. If we do not continue to increase our 

funding of research we simply will not get there, as Dr. Hodes indicated. The clinical study participation increases that are called for 

in the G8 communique are also absolutely essential. The two 

things that hold back research progress fundamentally are adequate funding and adequate participation in clinical trials. Sharing 

data, which you have heard about previously already this afternoon, is essential to this. With limited resources worldwide being 

40

spent already on this issue, to duplicate efforts unnecessarily, not 

in the name of advancing the science but to duplicate those efforts 

where we will not see the additional gains, is simply not useful to 

us around the world. 

As you heard Dr. Hodes indicate, the Alzheimer’s Association is 

convening groups worldwide, along with the National Institute on 

Aging, to look at the very specific funding being done by agencies 

like ours, organizations like ours, by Federal agencies across the 

world, so that we can coordinate and maximize the returns on investment that we are all making on these things. Through our 

global research program at the Alzheimer’s Association, we fund 

into 28 countries already today and we intend to continue that kind 

of an effort on a private basis so that we can extend the advances 

worldwide from the best thinking worldwide. 

You may have heard the story of the young guy in Mongolia who 

took one of those open access classes from MIT and aced it at 100-

percent level with limited other knowledge. Now that is not an illustration of what necessarily will occur in Alzheimer’s research, 

but by making available more of the information across the world 

we can tap what are the knowledge bases of those countries as 

well, because research historically has not been shared well. 

So we are working on even another step in this process which 

will take the database that you heard Dr. Hodes talk about, a database of research projects, to another level which would be the sharing of all of the data from those projects worldwide. So we need the 

cooperation of other governments. We need the cooperation of other 

funders. We need our own Federal Government to see to it that all 

of those data are shared. 

We know that from the convening of our own research roundtable with all the companies engaged in drug development and imaging and other kinds of aspects of care in Alzheimer’s, along with 

the FDA and the European Medicines Agency, that by putting all 

of those people in the same room we can see new outcomes that 

we otherwise would not see. There is recently an FDA guidance 

that has made possible new clinical studies that previously would 

not have been a possibility under the old FDA approach caused directly by putting all of those people in the same room together to 

discuss what can be changed. And we will see advances from that, 

we believe, in the reasonably near term. 

You asked questions too about what is going to happen after the 

summit. We are working with the Alzheimer’s Disease International folks of which we are the sole member in the United 

States to convene workgroups across the world, particularly in our 

case on research. We will lead a research workgroup that will transcend the G8 and go beyond those countries to try to identify, 

again, how we can best utilize funding that is available in the 

world, but also what needs to be done in those countries where the 

leadership is not present the way it is in the United States today. 

The worldwide ADNI project, the Alzheimer’s Disease 

Neuroimaging Initiative that you heard Dr. Hodes talk about, is 

one of the best examples of what can be accomplished in a research 

effort by sharing those data. There are already more scientific papers, more scientific output from people who were not funded in 

that study than by the people who originally were. So we have 

41

more than doubled the return on investment from that research 

and we can do this across all of medical research and particularly 

all of it in Alzheimer’s. 

Now what can the United States do on this? The very basic leadership of the United States is fundamental to the changes that will 

occur in this cause, in this particular disease. You have talked 

about it, Chairman Smith, in terms of what happened in 

HIV/AIDS, in terms of what has happened in cancer, where I 

worked for many years. In many ways I think the model of what 

has occurred in cancer has shown us the advantages of research investment, whereas the model of the HIV/AIDS cooperation worldwide has shown us how to share those data and information. The 

fact is, if we did not have the National Alzheimer’s Project Act we 

would not have the G8. 

In terms of the question about whether or not the G8 will become 

the milestone that we would hope it would be, we have to continue 

to show the leadership in the United States to advance this cause, 

to make the commitments to new research funding. Because if we 

do not show that leadership, I am confident at least that we will 

not see the kinds of advances that we otherwise are going to need 

to have on a timely enough basis to deal with what is the aging 

of the population, very specifically the boomer generation in the 

United States. 

The timeline, as you have already heard, for the development of 

drugs is sufficiently long that if we don’t make those commitments 

now, we are about to hopefully see one that will advance this, but 

even others beyond that it is potentially too late to get the job done 

for the generations that will drive the huge levels of cost that you 

have heard about from all of us. And seeing to it again that those 

data are shared worldwide will be one of the other things, I think, 

that this Government can do to make a very big difference in these 

advancements. 

Just fundamentally, if we make those commitments today given 

the advancements that we hear from the scientific community 

based upon what we have already developed—you may not know 

that the research into Alzheimer’s in particular is only about 30 

years old. Cancer has been studied for about 100 years. The science 

community didn’t make the connection between what was the 

woman that Alzheimer discovered the disease in who was 51 years 

old, so the disease was considered an anomalous condition of people 

in middle age. So for 65 years there wasn’t any research done on 

this. We have a gap then in the development of the research, but 

we have learned a lot in those 30 years. We are at the point, potentially a tipping point, of learning enough to advance those kinds of 

gains very rapidly. 

There is a new collaboration that is taking place with the United 

States Federal Government, the Alzheimer’s Association, and with 

industry. It is called the Accelerating Medicines Partnership. And 

the idea of this is to have all those sectors working together with 

academia to identify the very best drug targets. Instead of working 

alone and in silos, to identify those together so that we can speed 

the development of drugs on the timeline that I am talking about. 

So if in fact we do that I believe based upon what I hear from the 

42

science community that we have the very real possibility of making 

rapid gains on Alzheimer’s and other dementias. 

So I thank you again for holding this hearing and for your leadership on this effort, and look forward to continuing to work to advance this cause and to find the change in the course of this disease. 

[The prepared statement of Mr. Johns follows:]


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Mr. SMITH. Thank you, Mr. Johns. Thank you so very much for 

your leadership and again, your very specific recommendations, as 

well as an elaboration of what you are doing. It was very, very 

helpful. 

We are joined by Congressman Chaka Fattah. Chaka? 

Mr. FATTAH. Thank you, Mr. Chairman. And the chairman and 

I have worked together on a number of health related issues including blood safety and cord blood. He has done a lot of good. And 

I appreciate the invitation to join you. This is a subject that I have 

an extraordinary amount of interest in. And I was on the floor, 

slightly delayed. 

We just passed the appropriations bill, or we are getting ready 

to pass it, and included in that is language that I have authored 

to internationalize the collaboration that we built in at the Office 

of Science and Technology, Phil Rubin’s work. And we have created 

language that would build on the G8 summit and build on the 

work of the EU and Israel and so many other countries and 

groupings of countries who have started to focus in on this. 

And George, you have been way out in front of this for a very 

long time, but I think I wanted to focus in on what you think the 

Congress can do. We have the national plan, we put additional dollars. There is, as you just mentioned, Mr. Johns, a sense of a tipping point. There are some very important clinical trials that are 

taking place now or getting ready to be launched into second and 

third phases. I mean, there are some things going on, but we are 

not in any way yet where we need to be. 

And so I note in your testimony, George, that you suggest that 

the Congress should in a similar fashion as we did with HIV, build 

a much more global approach to this effort, and if there are any 

other specific recommendations that the chairman and I and others 

who are interested in these matters may be able to focus in on. 

Mr. VRADENBURG. Well, you said I was way ahead, but I am following you, Mr. Fattah. You have been in front of this issue on 

neuroscience and how to get a White House office focused on it 

across agencies and now internationally, and I commend you on 

your leadership on these issues. I think that we need to press forward and periodically have this committee and other committees of 

Congress make sure that we are moving forward during 2014. 

It is a critical time as Harry has mentioned, and I agree, that 

we ensure that we pick this moment in time and say this is a turning point not just a dot on a long line, so that we, in fact, hold accountable for all of the commitments that are made out there and 

insist that the U.S. Government demonstrate how it is that they 

are moving this forward and using their leadership to do so. I have 

suggested to the chair of this subcommittee that there be a set of 

parliamentarians. That you meet with EU parliamentarians, UK 

parliamentarians, Canadian parliamentarians, and Japanese parliamentarians to ensure that there is political backbone to the commitments that are made, because it is going to take the parliaments of these countries as well as the national leaders and the 

health ministers to ensure that we get to a unified effort. I think 

that you need to invite the private sector to the table in a genuinely open and joint kind of approach, a unified approach. 

49

HIV/AIDS in the end—I am not going to say the end—we haven’t 

gotten to the end—but with respect to what started to drive that 

was the unity of purpose, the unity of effort and thus the clarity 

of a combined plan in which everyone’s roles were well defined and 

where people executed against a plan and could rely on each other 

to execute against a plan. 

So bringing together all of the stakeholders, now you can’t bring 

Madison Square Garden, but the leaders of the stakeholders and 

make sure the processes are transparent, to force this development 

of a global action plan, to authorize the existence of a global fund, 

will signal that in fact this nation is prepared to continue its historic leadership on these global health efforts and actually move 

the needle to ensure that what happened in London doesn’t stay 

in London. 

Mr. FATTAH. Well, let me ask just two very specific, concise questions, Mr. Chairman, on this point. So one is, the EU has a joint 

clinical trial initiative in which they have gotten all of the EU 

countries engaged along with Israel, and we have not joined in yet. 

And as a nation I think we should, because this issue of the clinical 

trials, which you mentioned in the testimony as I was coming in, 

I think, is very, very important. We have opportunities with inside 

of the work that you have talked about in terms of the pharmaceutical community. I have suggested that not only do we have Alzheimer’s, we have 500-plus other diseases and disorders that we 

haven’t come up with effective treatments for. I am trying to understate this. 

And I think we should be much more welcoming in terms of trying to get the pharmaceutical industry more full-throatedly involved in this, and even to the degree that we might have to adjust 

exclusivity issues, patent issues, in ways that could provide more 

of a runway for them in terms of the fiduciary burdens that they 

have, or find ways for them to partner, like what the Alzheimer’s 

Association, you are doing, for them to do research separate and 

aside and outside of their fiduciary burdens so that we can move 

forward. So if you could react to just to those two things. 

Mr. VRADENBURG. The Innovative Medicines Initiative of Europe 

has issued a call for proposals to which the response time is roughly April, to come up with consortia that will develop a Europe-wide 

clinical trial network system. They have invited the Global CEO 

Initiative, the industry coalition that I convene, to come up with a 

North American side to that. And whether that is a side or whether we develop a global platform and we work with them, there is 

enormous momentum on both sides of the Atlantic and in Japan, 

but right now it is focused on both sides of the Atlantic, to do something with clinical trial efforts in Alzheimer’s to develop linked patient registries so that we know the characterization that has been 

made of patients around the world. They get into longitudinal 

trials that are well characterized and studied and that in fact we 

can populate or pre-populate, potentially, global clinical trial platforms. 

So that project is underway. There is no question it is going to 

require some government assistance, but hopefully it will also involve some private funding since the value creation is good for industry as well as for governments. Your second point? 

50

Yes, sure. 

Mr. JOHNS. Well, certainly this issue of improving participation 

in clinical studies is absolutely essential. We know that already the 

three big prevention studies that are just getting underway in the 

United States are going to cause the need for many, many more 

people than we previously had participate. It is important to note 

here if you don’t realize already that one of the things that has 

happened is a consensus in the science community on this particular condition, is that there is a belief that intervening earlier 

in the disease is absolutely essential. So that is going to mean actually a prevention approach to the disease. The prevention approach 

means that many of the people who would need to be accrued into 

clinical studies will not have symptoms, will not have the disease 

actively in terms of ability to see it other than potentially on a biomarker scan. 

Mr. FATTAH. What we think of as early onset is pretty far along. 

Mr. JOHNS. That is exactly right. 

Mr. FATTAH. So we need to step in. But my second question was 

on this question about patent, lengthening the period of exclusiveness for treatments and solutions as a way of maybe taking a carrot approach to a more robust effort among the pharmaceutical industry. Because right now we are nowhere, we need to get somewhere, and I am convinced that the academic side of this is very 

important. But I also think that the pharmaceutical industry is 

going to be as essential as they were with HIV/AIDS. 

Mr. JOHNS. You are absolutely right, Congressman. Both are absolutely essential. Part of the problem though has been the underfunding on the front end of the pipeline. This is critical to recognize, because the pharmaceutical companies, if we had sitting here 

next to us one of the leaders of one of those companies, I have sat 

on panels with them previously, they would also tell you that they 

need the fueling of the pipeline. 

In all diseases, the basic research is not done by the companies 

because Wall Street will beat up their stock price. They won’t be 

able to make the investments in the parts of the pipeline, the later 

stages of development that they need to make. So it is absolutely 

critical that we tie these things together, not only the kinds of considerations you are raising this particular question on but also that 

investment in the front end of the pipeline to make all of this work 

together. 

Mr. VRADENBURG. You will see in the G8 commitments there is 

an explicit commitment: Take stock of our current national incentive structure for research working in partnership with the OECD. 

So there is an invitation to you, Congressman Fattah, to respond 

to the G8 by taking stock of our current national incentive structure. I encourage you to do so. 

Mr. FATTAH. Thank you, Mr. Chairman for allowing me to participate. 

Mr. SMITH. Oh, it is a privilege. And as Chaka said we have 

worked together on so many other issues including safe blood initiatives in Africa, so thank you for your work on Alzheimer’s. 

We do have another vote and it is a big vote so we are going to 

have to leave momentarily, but I just want to assure you, Mr. 

Vradenburg, that I would love to follow up with you on your idea 

51

of this global fund. We just had Mark Dybul testify, and Mark, as 

you know, was President Bush’s HIV/AIDS czar, then became the 

coordinator, and he is now the executive director of the global fund 

for HIV/AIDS, tuberculosis and malaria. 

And he used the words very similar to what you have used, the 

tipping point, Mr. Johns, you have mentioned potentially 

tranformational. We are at a tipping point and we could lose the 

momentum from the G8 summit if implementation is lackluster 

and not optimum. So we will do a series of hearings, I think a piece 

of legislation that tries to galvanize not just Congress but other nations, also, I think your idea of the working group. 

I will be leading the delegation to the OSCE Parliamentary Assembly in July, and I would like to reach out to my fellow parliamentarians. There are 57 countries that make up the OSCE Parliamentary Assembly. They usually send five, six members of their 

Parliament, depending on the country. In terms of Russia it is usually one of the top Duma members, often it is the speaker. So this 

would be an ideal time to form, do the advance work but do as you 

suggested, a working group within that venue of the OSCE PA on 

Alzheimer’s, especially using the G8 action plan as a mobilizing influence so we all go back to our respective congresses and parliaments to fight for additional funding and to make sure that our 

executive branches as well as our legislative branches are doing all 

that we ought to be doing to mitigate and hopefully end this horrible disease. 

We do have this vote so I will just ask, I have a lot of questions 

but maybe just if there is anything you would like to leave with 

us? Your testimonies again are very, very extensive, again filled 

with information that this subcommittee and membes on both sides 

of the aisle, I know, will go through again and again to pull out 

and to see what we can do to be of greater value in this all-important fight. 

Please. 

Mr. VRADENBURG. I want to just make one quite different point. 

One of the scarcest commodities in a field as diverse and eclectic 

as this is leadership. And your leadership on this——

Mr. WEBER. We have the same problem. 

Mr. VRADENBURG. I know you know the problem. And thus when 

we see leadership on Cameron’s part or on Obama’s part or on your 

part, we need to celebrate it and say, let’s go. Because we don’t 

need 500 leaders, but we need a sufficiently motivated, limited 

number of leaders well positioned to do what they can do and then 

to have that leadership group drive action. And action is the hardest thing to get when you get some diversity like we have got here 

with governments globally, industry globally, care problems not 

just research problems globally. This is going to be a challenge of 

leadership. So that is the one last point I would make. 

Mr. JOHNS. And certainly what I observed in talking to many of 

the members of Parliament from the UK who were there and the 

ministers who are part of the Parliament of course in that system, 

there was an embrace of this particular issue. From Cameron on 

down through that group it was pretty clear that they have embraced this issue, recognizing the human impact, the economic impact of the disease if in fact action isn’t taken on a timely enough 

52

basis. They made a commitment to double their investment in research. They are looking at the kinds of things that will speed drug 

discovery. They are looking at the kinds of things that will move 

clinical trial participation. 

So that kind of leadership that you have already shown and that 

make up the presence of the National Alzheimer’s Project Act to 

taking out those things to the next levels, the next steps will be 

absolutely critical, and the U.S. leadership again in particular will 

be essential. 

Mr. SMITH. Let me just ask you very briefly, obviously yourselves 

are doing, I don’t know how you could do anymore than you are 

doing on behalf of Alzheimer’s patients, research and for respite 

care for those who care, as you mentioned, Mr. Vradenburg, about 

the women who are often the caregivers, how difficult it is for them 

and so it becomes an empowerment issue. But it seems to me that 

one of the tipping points for additional resources on HIV/AIDS was 

when the Gates Foundation and others joined in and saw that their 

money had such a multiplier effect. Are you sensing that Gates and 

others may be realizing that this is a place where dollars spent 

now will multiply many-fold for our older Americans and those of 

course who have early onset? 

Mr. JOHNS. They are not particularly from the foundation that 

you have mentioned because of the way that they have defined 

their particular mission. 

Mr. SMITH. Mandates can change. 

Mr. JOHNS. Certainly. But we are certainly seeing, the Alzheimer’s Association has been spending a lot of time and effort in 

the last several years to raise the discussion in the American populace. We know that what happened in cancer, for example, as well 

as in AIDS, that when it was not discussed, more so in cancer 

where it was taboo topic to discuss—there was a study in 1961 that 

asked doctors if they told their patients they had the disease when 

they made a diagnosis, 90-plus percent of them didn’t tell them. It 

is unimaginable today, but it illustrates the condition at the time 

of what was a taboo subject to discuss. 

Too much of that is still present for Alzheimer’s, but we have 

made huge gains in changing that national discussion. We need to 

change that discussion worldwide too, but we need to make the advances that will continue to have people embrace dealing with this 

disease. Even the business community hasn’t so much wanted to 

deal with the disease. You don’t associate your product with something that people shouldn’t discuss. That is the way they have seen 

it, regrettably, previously. We are seeing cracks in that from the 

efforts we have made to change that discussion, so I think that parallels the kind of question you posed. 

Mr. VRADENBURG. I would say where I am seeing the appetite is 

on the part of the social impact investing movement. This is a 

movement that started in the UK but it is beginning to spread 

globally. And what it is is that the $10 trillion of high net worth 

individual asset management, they do polling of their client base, 

and these are everywhere from investable assets of 1 million on up. 

They ask them, would you like your investments to reflect your values? And the answer is yes. But guess what? We have very good 

systems for measuring financial return on investment. We have 

53

lousy systems for measuring social return on investment. And if 

what we can do is to begin to develop a clear plan that demonstrates if you invest $1 billion, Mr. Foundation 1 or 2 or 3, you 

will get this movement on this unmet need of on the most unimaginable proportions. 

And so what we need to do is get that clarity of plan and demonstrate how the investment of funds will actually have an impact 

on something that is going to be the scourge of this world if we 

don’t get acting. And that is where I sense there is a possibility 

here. But what this funding now from these very high net worth 

investors want is something that says, I want to know when I invest I will get a social return as well as a financial return. 

Mr. JOHNS. Yes, if I can say, and I know you have to go, Mr. 

Chairman. One last thing I would say is that in the question about 

what can you do, seeing to it that the administrations—this one, 

the next one—implement the National Alzheimer’s Project Act as 

you wrote it, passed it and put it into place is absolutely critical 

oversight on your part to be able to achieve what can be done. Laying out the kind of plan that George just mentioned, which is laid 

out in that plan, the National Alzheimer’s Project Act plan, the 

plan for the country as a strategic plan for Alzheimer’s, is a pathway to changing this in the United States and for providing the nature of the leadership we have discussed for the world. That is one 

thing I would ask all of you to do. It will make a huge difference. 

Mr. SMITH. Thank you. And I do appreciate your leadership——

Mr. WEBER. I am done. 

Mr. SMITH. Thank you, Mr. Weber. This may sound like a minor 

point, but just to get it on the record I did notice that the signers 

of the G8 were basically ministers of health or secretary of health 

except for us. And Don Moulds, I am sure, is a very good man, but 

did anyone take away that an acting Assistant Secretary for Planning and Evaluation——

Mr. VRADENBURG. Start with the proposition that Don Moulds is 

a good man, that the Assistant Secretary’s position is now acting, 

he was acting at the time, but also that Secretary Sebelius felt that 

she had some urgent business to attend to in this country, because 

she was planning to come. So it did not reflect any lack of commitment on the part——

Mr. SMITH. They——

Mr. VRADENBURG. Yes, they did. 

Mr. JOHNS. I did not perceive among the ministers that there 

was any ill perception. I too give credit to Mr. Moulds for representing us well. 

Mr. SMITH. I just wanted to get that on the record and make it 

clear. I thank you again and look forward to work with you on legislation, and we will see you soon. 

Mr. JOHNS. Thank you, sir. 

[Whereupon, at 4:03 p.m., the subcommittee was adjourned.] 

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MATERIAL SUBMITTED FOR THE RECORD BY THE HONORABLE CHRISTOPHER H. SMITH, 

A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW JERSEY, AND CHAIRMAN, 

SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH, GLOBAL HUMAN RIGHTS, AND INTERNATIONAL ORGANIZATIONS


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