[House Hearing, 113 Congress]
[From the U.S. Government Publishing Office]




                   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





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                      COMMITTEE ON FOREIGN AFFAIRS

                 EDWARD R. ROYCE, California, Chairman
CHRISTOPHER H. SMITH, New Jersey     ELIOT L. ENGEL, New York
ILEANA ROS-LEHTINEN, Florida         ENI F.H. FALEOMAVAEGA, American 
DANA ROHRABACHER, California             Samoa
STEVE CHABOT, Ohio                   BRAD SHERMAN, California
JOE WILSON, South Carolina           GREGORY W. MEEKS, New York
MICHAEL T. McCAUL, Texas             ALBIO SIRES, New Jersey
TED POE, Texas                       GERALD E. CONNOLLY, Virginia
MATT SALMON, Arizona                 THEODORE E. DEUTCH, Florida
TOM MARINO, Pennsylvania             BRIAN HIGGINS, New York
JEFF DUNCAN, South Carolina          KAREN BASS, California
ADAM KINZINGER, Illinois             WILLIAM KEATING, Massachusetts
MO BROOKS, Alabama                   DAVID CICILLINE, Rhode Island
TOM COTTON, Arkansas                 ALAN GRAYSON, Florida
PAUL COOK, California                JUAN VARGAS, California
GEORGE HOLDING, North Carolina       BRADLEY S. SCHNEIDER, Illinois
RANDY K. WEBER SR., Texas            JOSEPH P. KENNEDY III, 
SCOTT PERRY, Pennsylvania                Massachusetts
STEVE STOCKMAN, Texas                AMI BERA, California
RON DeSANTIS, Florida                ALAN S. LOWENTHAL, California
TREY RADEL, Florida                  GRACE MENG, New York
DOUG COLLINS, Georgia                LOIS FRANKEL, Florida
MARK MEADOWS, North Carolina         TULSI GABBARD, Hawaii
TED S. YOHO, Florida                 JOAQUIN CASTRO, Texas
LUKE MESSER, Indiana

     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             KAREN BASS, California
RANDY K. WEBER SR., Texas            DAVID CICILLINE, Rhode Island
STEVE STOCKMAN, Texas                AMI BERA, California
MARK MEADOWS, North Carolina


















                            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

 
                   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 subcommittee 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.
    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.
    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 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.
    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 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 
follow-up 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 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.
    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 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 talked about, three genes which guarantee that 
one will unfortunately, 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, if there are important areas 
of research that are being underdeveloped. 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 sequencing is done. As soon 
as it is done and quality control is completed, 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 international 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.
    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 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 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 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 I am not a fan of layers of democracy, I 
believe strongly in accountability. 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 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 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 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.
    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?
    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 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 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 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.]
                                     

                                     

                            A P P E N D I X

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                      Material Submitted for the Record


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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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