I
am charged this evening with sharing my view of research and advocacy in the 21st
century. This ambitious challenge stimulated me to think a bit about the
20th century; specifically, it stimulated me to think about a
few nationally defining events that directly or indirectly had an impact on
health and research for health. I've selected just a few of those to
reflect on with you.
World
War II galvanized the nation and stimulated a commitment to broader access to
higher education via the GI Bill, and, following World War II, for the first
time, the federal government became involved in funding basic science as an
engine of innovation and an economic driver. Sputnik was a wake-up call
to the
By
the end of the 20th century, Americans had become accustomed to a
vibrant economy, fueled by innovation and strong government investment;
accustomed to world leadership in science, including medical science;
accustomed to citizen activists having a voice that is heard by elected and appointed
officials; and accustomed to high standards in science education.
I’d have to say that those standards in science education have been
severely challenged for some time now; compounding that fact is the
reality that the other things we have become accustomed to may be in peril, as
well.
A
stunning event at the beginning of this century, the 9/11 attacks, galvanized
the nation anew. The threat of more terrorism within our borders has
framed much of our national discourse for the last three years, and I’m
sure you will agree that it will continue to do so more years to
come. It’s too soon to say whether the galvanizing events of
9/11 fully re-energized our economic engines, our educational system, or our
national well-being.
Not
long after 9/11, three years ago this month, we were visited by anthrax
terrorism. Quantitatively speaking, with 18 confirmed cases and 5 deaths, this
several-week long episode caused only a tiny fraction of the morbidity and
mortality suffered every day from influenza, itself just one of several very
real infectious disease threats. The impact of the anthrax episode was far
greater than its health toll, however. It was a wake-up call to the American
public and its decision makers akin to Sputnik: we now know that we are
vulnerable to several naturally emerging and re-emerging diseases, as well as
to those which have been termed “deliberately” emerging, such as
chemical, biological, or nuclear agents of bioterrorism. Research is an
important aspect of the broad public health response to emerging and
re-emerging diseases, and it is going forward in a robust
manor; rebuilding our public health infrastructure is an equally critical
component of the response. Like the need for upgraded commitment to
homeland security, the need for research and infrastructure rebuilding was not
well appreciated by the public or its elected officials a little over three
years ago; today, there is some progress to report, but a great deal more
work needs to be done. People like me who watch, and sometimes
try to influence, decision-making in Washington are concerned that not enough
attention is being paid to public health preparedness, and not enough
investment is being made now to prevent catastrophic loss of life and compromise to quality of life later – whether from introduced, or
naturally occurring, public health disasters.
I
include among high priority public health challenges the urgency of doing more now to combat
the staggering daily toll taken by chronic disease and disability. And, as this
audience is well aware, there is simply no time to waste when it comes to improving health
and well-being for people with cognitive disabilities. I urge the Coleman
Institute, powered by citizen advocates who are determined to make a
difference, to stay the course in implementing your agenda, so that a few short
years from now we will be reading about the challenges once faced by people
with cognitive disabilities in history books, where they belong.
It's
a fact that research changes the history of health and well-being. Many
people alive today do not know what an iron lung is; many physicians have
never seen a case of smallpox. Life saving and quality of life-enhancing
things that we regard as common sense today were not always so: consider
childhood vaccinations; screening for breast and prostate cancer; the use of
seat belts; putting babies on their backs to sleep;
practicing safe sex; screening the blood supply for toxic agents, getting flu
shots – the list goes on. The fact is that today’s common
sense is based on yesterday’s research. Research will lead us to tomorrow’s common
sense, as well, if we give it a chance – common sense that will consider
mental health as important as physical health. While eighty-eight percent of
Americans in fact do consider mental and physical health to be equally
important, only twenty-six percent believe that mental and physical health are
treated with equal importance. (Although I believe in the accuracy of
this public opinion poll data – my organization commissioned the survey
– I am surprised that as many as a quarter of our fellow citizens believe
that mental and physical health are treated equally, since the facts are sadly
otherwise.) These survey results were released on September 20th at a Washington press conference that included forceful remarks about the
immediacy and importance of stepping up to meet and master threats to mental
health, delivered by the Surgeon General, Admiral Richard Carmona.
Like his immediate predecessor Dr. David Satcher, who was the first Surgeon
General to issue a report on mental health, Dr. Carmona is a passionate
advocate for mental health. His bully pulpit voice is welcomed and
important, but it is not nearly enough. We’ll only get
to the level of common
sense where mental health receives the same attention and support as physical
health because you and your colleagues, friends and family, and hundreds and then thousands more like you, make it your
personal priority. Recent history shows us that if
enough people speak out, decision-makers will listen and make mental health
their priority, too. Advocacy, that’s what
it’s all about.
I’ve
been asked to comment on issues and trends in advocacy for research
nationally. That’s a welcome
assignment for me!
Here’s
my four-point overview of what I see as the encouraging trends:
Encouraging trend #1.
The potential offered by research has never been greater – in the
behavioral sciences as well as in basic and clinical sciences and assistive
technology. We have literally never had as many researchers at work
unraveling the mysteries of disease and disability, and their cure, treatment
and prevention. This is an exciting statement of possibility –
possibilities we are on the cusp of realizing – leading to lives that
will be saved and enhanced. You may have heard Illinois
Senatorial candidate Barak Obama address the Democratic Convention in July – he spoke of the
“audacity of hope” – he was speaking about the distinctive
qualities that make Americans American; about a belief in possibilities that is
sometimes called the American dream, or the frontier spirit – he was, to
me, speaking about research – which, more than anything else in this
great country of ours, epitomizes the “audacity of hope.” I think that the possibilities
of research today are more than enough reason for us all to be more
"audacious" in our advocacy for research.
Encouraging trend #2. Public interest
in health and quality of life has never been greater. Health information
is everywhere – on the front page, on television, in books, on the
internet – at Research!America, we commission public opinion polls that
clearly quantify heightened public interest – the polls not only show
very strong public interest, by the way, but also show strong public support to
pay for more research. That’s the kind of message that public
decision-makers need to hear, loud and clear, and audacious advocates like you
can deliver it! If decision- makers are skeptical that the public wants
to pay more for anything these days, research included, they should be
challenged to conduct their own polls – they do this all the time on
other issues, as we all know. We know from experience that when elected
officials ask questions about public interest in supporting research, they get
the same answers we get at Research!America – in scientific terms, you
could say that they are replicating our data. With enough encouragement,
public officials will also replicate your determination to put research to work
to meet the challenges of cognitive disabilities.
Encouraging trend #3. Public
commitment to those who have been historically underserved by research –
including those with cognitive and developmental disabilities – has never
been greater. Again, this is because research is moving more rapidly than
ever, and more people see that the possibilities are tantalizing, but it is also because people in the 21st century are
more willing to acknowledge that fairness has not always been practiced, even
as it has long been preached . . . Here’s a telling case in point involving a different kind of
disparity. In September (2004) in Washington the National
Museum of the American Indian was opened in a spirit of high
celebration, with crowds extending as far as the eye could see – there was
a palpable awareness of justice too long gone undone, a commitment to fairness
in the air and in people’s conversations on the Mall and in the
media. I think that a societal commitment to righting other injustices
can happen now, too. It can happen for long ignored, underserved people
with cognitive disabilities, too. And it’s about time.
Encouraging trend #4. Leadership for research has
never been stronger – leadership
within the research community and leadership beyond it. I mentioned
Surgeon General Carmona; there are also forceful and effective leaders
like Dr. Elias Zerhouni of the National Institutes of Health and Dr. Julie
Gerberding of the Centers for Disease Control and Prevention (CDC). There
are revered advocates like former first lady Nancy Reagan speaking out,
celebrities like Lance Armstrong, who was here at Fitzsimons today with the
Tour of Hope, Christopher Reeve, Mary Tyler Moore, Michael J. Fox, and
others. There are leaders like Research!
To
summarize: the promise of research has never been greater; public
interest and support has never been higher; public commitment to righting
acknowledged disparities has never been stronger; and leaders for research have
never been more numerous or more forceful. And I say: thank goodness for all of these
encouraging trends, because we are facing challenging times indeed. We
know what we want to accomplish: we want mental health parity, we want a cure for
Alzheimer’s; we want people with cognitive disabilities to enjoy
independent living; we want strong, sustained investment in innovation in
both the public and private sectors, to name a few.
Among
the issues and uncertainties we face in achieving our goals are:
roadblocks in speeding discovery to patients; daunting challenges in
creating the infrastructure it will take to combat chronic as well as emerging
public health threats; organized ideological resistance to removing
barriers to the conduct of promising new basic research, including embryonic
stem cell research; indifference to the task of attracting, training and
retaining the best and the brightest to all fields of science; disbelief
that we must bolster our nation’s world leadership in research in the
face of greatly expanded international commitments to research; and
despair at the challenge of sustaining vigorous funding for our federal
research agencies, the engines of private sector economic growth as well as
discovery for health.
Let
me speak to a few of these in more detail:
1. I expect you share my concern about the
projections for funding medical and health research in federal agencies.
The facts: the president’s FY05 budget proposal -- that’s the year that began on October 1 – sets
an increase for the appropriation to the National Institutes of Health at 2.6%.
The Congress has agreed with this low increase, although we hope the
Senate will prevail with a marginally higher increase when the appropriations
bills are finally passed in December or later. Inflation during this same
federal fiscal year is estimated to rise at
a rate of 4.9 percent. With this projected gap, the “real”
investment in research will lag, potentially limiting discovery and stifling
health advances we all might otherwise reasonably anticipate. The already highly competitive climate for researchers seeking support
from the NIH, support that is considered the “gold standard” for
medical research worldwide, is already becoming much cloudier. It’s
bad enough that only about one in three qualified, excellent research projects
could be funded; those odds are on their way to dropping to one in four or
lower. That means 3 of every 4 good ideas to improve health and quality
of life are going unexplored. This equation makes little or no common sense,
yet by design or default it may be allowed to continue.
The situation is no brighter for
other federal research agencies.
So, it is essential to commit to finding the money in the existing
federal budget, or, alternatively, add money to that budget. It’s
been done before…even in times of large budget deficits, as we face
now. This is a daunting challenge, no doubt about it, and it leads me to
point number two:
2. Competition with other national issues is driving leaders and
would-be-leaders in
It’s
also important to connect the dots by talking about research as an economic
driver – you may know the statistics right here in Colorado, which I
first learned from University of Colorado President Betsy Hoffman
– for every $1 million
attracted to the state for research, 38 new jobs are created, and good jobs, at
that. You might also say the case for health research is a health-defense
case. It’s instructive to compare large national expenditures, like
those for military defense, to health defense, that is, health research.
If we can afford a department of defense budget of well over $400 billion
dollars a year, we can afford more than one-tenth of that for all federal
agencies, combined, that conduct medical and health research, with its promise
of contributing as much as military defense to the welfare of our nation and
its citizens. Here’s another telling contrast: during the 2003
holiday shopping season, the nation spent 216 billion dollars on holiday
shopping. That's more than three times what we spent on all medical and health
research in public and private sectors combined. I don’t think
there is any question that we can find the dollars for research.
I’m
committed to convincing advocates for research not to be afraid to talk about money – it’s your money,
after all. Less than 6 cents of every health dollar in the
3. And speaking of the health care dollar,
that's another challenge. The
soaring cost of health care and increasingly apparent injustices in the system
– or systems – of health care delivery are very much on the
nation’s agenda this year, as they will be for several years to come. It’s time for researchers and advocates for research to talk
more about how research saves dollars as well as lives. Research,
researchers, and advocates for research, must be at the table during
discussions of how to make the health care system fair and keep its costs under
control. Given a chance, research will deliver on its promise of more
individualized, and thus more appropriate and more cost-effective health care,
including prevention, where the huge economic payoff lies. Targeted,
individualized health care and prevention will save money as well as save
lives. In addition, research on efficiency and effectiveness of health
care delivery, or what is called health services research, will help contain
the costs of health care. So too, will technology help contain health
care costs. Take the RFID chip Vint
Cerf has told us about. Using this
technology to help eliminate pharmaceutical dispensing errors will save countless
dollars, and many lives. There is
no time to lose in putting research and technology to work to save health care
dollars. As advocate extraordinaire Mary Lasker was fond of saying,
“if you think research is expensive, try disease.”
Here
is an example of how research saves money. Even before we
find the way to cure and prevent Alzheimer’s, if we could just delay the
onset of Alzheimer’s by 5 years -- something well within the realm of
possibility -- we could save $50B annually in health care costs. We can,
and health economists increasingly
are, applying this kind of thinking to the costs of many diseases and
disabilities – what audacious advocates must do is spread the word;
use examples of economic savings to the health care system to make the case for
investment in research.
4. A fourth challenge is to bring research
closer to home. Research!America polls show that 91% of the
public believes that it is important that we maintain our role as a world
leader in medical and health research and 92% feel it is important to ensure
adequate funding for research. Yet, approximately half the adult
population, and, anecdotally speaking, an appallingly large number of elected
officials, cannot name a single place in their area where medical or health
research is being conducted. Most Americans don't know
any people who do research by name or personally. Nor do they know what their elected
officials’ positions
are in terms of support for medical, health
and scientific research. This is a recipe for trouble.
Fortunately, it is easily and, for a change, inexpensively addressed.
Each of us can personalize research. We can make research
real to our elected representatives at home. You can let them know that there is
already some, but nowhere near capacity, research being conducted in your
state, in your community – research that has great economic as well as
health value.
5. The fifth challenge is to recognize and
take steps to counter the damage that can be done by special interests that
don’t seem to value medical and health research. For example,
I’m thinking of animal rights activists, and those
who would shut down stem cell research. We are watching the stem cell
issue closely as it has become politicized in the Presidential election
campaign and a bond measure supporting it is on the ballot in
There may be a
range of views on both these issues right here in this room. Common
ground on stem cell research must be found here and elsewhere or (1) medical
research will move abroad to countries that are moving aggressively to match
and exceed
Public
policy discussions of controversial issues are one of the areas in which the
media plays an important role in communicating research to the public. People turn to the media to become informed
about policy issues. The problem is that there is too often a dearth of
information in the media to help people become familiar with and make up their
minds about research policy issues – be they issues like animal research
and stem cell research; or threats to the integrity of peer review, and the
continuing need to overcome health disparities. Like most politicians, most
members of the media aren’t knowledgeable about research and research
policy issues and are not comfortable talking about them. Last week I
moderated a debate on science policy issues in
What
you stand for, what you are working so hard to accomplish, is worth
doing. Research and advocacy to catalyze and integrate advances in
science, engineering and technology to promote quality of life and independent
living for people with cognitive disabilities is worth the effort! It’s a goal we can achieve and we can afford. I
urge you to stay the course, and to allow me and my colleagues at Research!
Thank
you.