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Lou-Ellen Barkan interviews
David Hyde Pierce
L ou-ellen Barkan (LEB): So
much has changed for us since we
talked six years ago. Is that true for
you?
David Hyde Pierce (DHP):
In the fifteen years I’ve been
involved, things have changed dramatically, but not in a straight
trajectory. In the early years, we
focused on public awareness and
federal funding. Every year we
raised our goal and the government
responded. Maureen Reagan, who
was a real powerhouse gets the credit.
Growing up in the White House, she
understood how power worked in
Washington. She was unstoppable
and we made huge progress.
When Maureen died and we went
to war, the focus on Alzheimer’s
disappeared. But in the last eighteen
months, the pace of breakthroughs
is picking up along with media
interest. I wish we could take credit,
because so many dedicated people
have been working on the issue. I
think that’s part of what’s going on,
but sadly, it’s really the demographic
trend as baby boomers start hitting
65 and the prevalence of the disease
increases. That’s what is putting
pressure on government, raising
people’s awareness and growing the
momentum.
LEB:
One change is the increase
in media coverage. Almost every day,
there’s an Alzheimer’s related story
in the press. But, unfortunately,
media attention doesn’t off set the
demographic trend. No matter how
much coverage we get, we can’t make
up for the number of New Yorkers
who are getting older.
DHP:
You’re right to be concerned
because what’s at stake will affect
millions of lives. Because there’s lag
time between the initial research on
therapies and a drug that is available
commercially, we are sealing the
fate of the five plus million people
already ill and those to come.
I see a strong parallel between
Alzheimer’s and the early days of
the AIDS crisis. The play “The
Normal Heart” is a reminder of how
nothing was done for a long time.
I think it’s because the people who
were affected just didn’t seem that
important. They seemed to be on
the periphery, on the fringe — and
that’s how we think about older
Americans. Eventually, everyone
fi nds out the hard way that there is
no divide between older Americans
and the rest of us.
LEB:
Our social workers say we
are hurt by ageism, a bias against
worrying about things happening
to older people, or at least treating
these issues very diff erently than we
do when we worry about children or
younger adults.
I have to admit that in my first few
weeks in this job, I expected to be
greeted by a group of clients in their
80s and 90s. I was shocked to see the
office full of clients from seventeen to
fifty, frantic with worry about their
jobs, their parents, and their financial
security. And given the diffi culties in
my own family, I’m not sure why
I didn’t realize right away that the
disease aff ects everyone.
The good news is that as AD has
affected more of us, we are less afraid to talk about it. But I wonder when
we’ll become angry enough, because
that’s what happened with AIDS and
breast cancer. I don’t think we have
enough rage.
DHP:
In the early years with the
Association, I was very angry. What
fueled me was what the disease did
to my family. When it first happens,
when you first lose someone, it’s
unthinkable that you can live
without them. And then, even worse,
you find that you can and you
have to. I haven’t lost my hatred of
the disease but, over time, the pain
becomes manageable.
The great thing about the
Alzheimer’s Association is that it
keeps being restocked by passionate
people, especially young people. The
NYC Chapter’s Junior Committee
is such an inspiration. They’re
young, they’re passionate and their
dedication, drive and work ethic gets
my fires burning again.
LEB:
When I arrived in 2004, I
found a group of young professionals
with real commitment, and all they
needed was a little attention and focus
to turn them into the powerhouse
they are today. We gave them the
right to allocate the funds they raise
and made it exciting and personal
for them. In the last few years,
they’ve raised and allocated close to
$1,000,000!
The program also meets one of
our goals to train responsible
philanthropists, who are thoughtful
about the way they allocate money,
passionate about raising it and
willing to stick with it. We’re so
proud of NYC’s Junior Committee,
but the truth is if you want to keep
young people engaged, you need to
invest them in the outcome, because
they’re the ones that are going to pay
the bills if they fail.
 DHP:
That’s the same model we use
for the Association’s Zenith Society.
Donors get presentations on research
projects that have been vetted and
they vote on what they want to
support. There’s something about
realizing your voice matters, that
these are decisions that directly affect
you that makes the process more
meaningful. I think if government
gave us a true picture of a future
with a full-blown Alzheimer’s
epidemic, Americans might make
different choices.
I look at people and I think “Yes,
save as much money as you want
for your retirement and I’ll tell you
what you’re going to be spending
that money on. You’re going to be
spending it on your own or some
else’s care for Alzheimer’s disease,
unless we find a way to change the
course of the disease.”
LEB:
Our National Public Policy
office did a great job getting that
message out to Congress, who heard
us and passed NAPA. During that
same period, we grew the number of
our local advocates over 300% in less
than four months. Once advocates
understood they had a real task
to push NAPA through, they got
invested and involved.
DHP:
When people complain that
our government doesn’t work, I say
it works exactly the way it’s supposed
to, our elected officials do what we
ask them to do. And if you’re not
happy with them, you vote them out.
LEB:
So how can we make sure
that the candidates understand and
support our position?
DHP:
I’m stunned how often
Alzheimer’s disease is not mentioned
in national debates. They talk about
Social Security reform and Medicare
and Medicaid, but Alzheimer’s is
the greatest threat to the health care
system and for a long time, it was left
out of the conversation. That’s why
I’m excited about NAPA, which will
provide a way to keep Alzheimer’s at
the table.
LEB:
I attended a presentation
at Rockefeller University in which
I learned that, even with all the
focus on cancer and the National
Cancer Institute, there’s been very
little progress in curing some very
common cancers. Apparently, while
there has been great improvement in
treating breast cancer, there’s been no
improvement in curing melanoma.
NAPA is exciting because it gives us
a place to go with our concerns, but
it’s still up to us to make NAPA a
meaningful resource.
DHP:
NAPA is an idea that costs
government nothing. We can’t
underestimate the fact that every
member of both houses of Congress
voted for NAPA. We have to be
actively engaged in making sure this
becomes a real agency – and a burr
in the side of the administration.
LEB:
I think that if the President’s
mother-in-law, with whom he has a
reflfl ections
8 volume 35 fall 2011
very warm and loving relationship,
became ill with Alzheimer’s this issue
would get more attention. Nothing
brings the message home like a
personal experience.
DHP:
We’ve seen the spikes in
public interest when a public figure
discloses a connection to Alzheimer’s
or dies. That’s what happened with
President Reagan. But eventually,
the public’s interest wanes and since
Alzheimer’s is such a gradual killer,
people forget the number of lives at
stake and it falls out of the public eye.
Alzheimers is a stealth disease, like a
Trojan horse, that quietly works its
way through society. If we wait for
the public to catch up, it may be too
late, so those of us who understand
the threat must do our job.
LEB:
I remember the outcry when
Betty Ford announced she had breast
cancer. She was the first public figure
to openly disclose that she was ill.
And suddenly, mothers and daughters
and fathers and sons got concerned
and angry. They sustained that anger
until funding was approved and
increased. Their rage took us to a new
place.
DHP:
The thing that’s diff erent is
that with cancer, there’s more hope.
Our community has made progress
in diagnostics, helping caregivers
and reducing the stigma, but the
bottom line is that therapies have not
advanced and there are no survivors
of Alzheimer’s disease — yet.
LEB:
So what’s the next step?
DHP:
No one who has been
touched by Alzheimer’s needs to
be told to advocate. Now others
see the threat and realize this is
something they can’t ignore. There
are breakthroughs as scientists share
knowledge and we see elected officials with different political views
coming together. The truth is the
Association can’t do this on our
own and neither can government,
private industry or the scientific
community. It’s such a complicated
fierce disease. It is these partnerships
and collaborations that will defeat
Alzheimer’s.
LEB:
We agree and are actively
looking for ways to expand our
audiences. Our “Connect to Culture”
program has affi liated us with
museums, dance and music programs.
Have you heard about any other new
programs?
DHP:
Depending on the stage of
the disease, the arts are fertile ground
for reaching people with Alzheimer’s,
whether its museum experiences,
painting or journal writing — all
new ways of expression.
LEB:
And every time, we engage
with an institution, we have the
opportunity to tell our story and
bring on new supporters. And that’s
what you have done for us throughout
the fifteen years you’ve been working
on our behalf. I know there is much
more on the horizon and on behalf of
the NYC Chapter, I can tell you that
we are looking forward to sharing
every moment with you.
David Hyde Pierce’s longest-running
role to date has been as an advocate
for Alzheimer’s disease awareness and
research. Best known as Niles Crane,
the character he played for 11 years
on NBC’s hit sitcom Frasier (as well
as his 2008 Tony for the Broadway
musical Curtains), Pierce originally
got involved with the Alzheimer’s cause
for very personal reasons, losing his
father and grandfather to the disease.
A long-time supporter of the New York
City Chapter, we thank David for his
continued support.
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