The Alzheimer's
Association is the
leading, global
voluntary health
organization in
Alzheimer's care and
support, and the
largest private,
nonprofit funder of
Alzheimer's
research.
Editor-in-Chief Gary Barg sat
down for a wide
ranging conversation
with Harry Johns,
the association’s
president & CEO.
Gary
Barg: Tell
me about the
clinical trial
education campaign.
Harry
Johns:
Gary, I worked in
the health field for
a long time and as
you well know,
medical science is
impeded by the lack
of participation in
clinical trials
across medical
research. That is
particularly
problematic for
Alzheimer’s disease.
We saw an
opportunity to reach
out to people that
we touch every day
in our communities
from our chapters
and try to get more
people engaged in
doing things that
would benefit other
people down the
road.
Any of us who
have been touched by
this disease do not
want to see others
affected by it. We
know we cannot
eliminate it
immediately. But if
we can make an
impact on it, we at
least leave a legacy
for the people we
have cared for.
Gary
Barg: In an
Alzheimer’s trial,
there is the need
for a caregiver to
participate as well
and serve as an
in-home coach for
their loved one. To
educate that
caregiver is
actually really
supporting the
connection between
research and the
public.
Harry
Johns: Oh,
I think you are
absolutely right.
The caregiver plays
a critical role in
the decision to
participate and in
terms of ongoing
advice and care
because, as we all
know, the person is
diagnosed impaired.
Gary
Barg: On
another note, I am
really impressed
about the creation
of the early stage
advisory group. You
are one of the few
places, I think,
where now all
stakeholders have a
voice in Alzheimer’s
care. Can you tell
me a little bit
about the concept of
the early stage
advisory group?
Harry
Johns: When
I arrived at the
Alzheimer’s
Association, I heard
from many people who
were at an early
stage that needed a
voice in the
process, and we
certainly agree with
them. I worked in
the cancer field for
a long, long time,
so I am very much
accustomed to the
idea of survivors
being at the table.
In cancer, people
are treated as
survivors from the
point of diagnosis.
