We do not have
the same potential
in Alzheimer’s yet.
We hope to, and we
are certainly
working on that as
well as you know,
Gary. But until we
do, the voice of the
person who has the
disease today is one
of the most
important voices in
the entire
discussion as far as
I am concerned. What
we really want to
accomplish, for us
as an organization,
is to learn from
them what we can do
with them and for
them, and with their
guidance so we are
doing the kinds of
things they see as
most appropriate and
most beneficial.
Gary
Barg: I
think that is really
important for the
person with
Alzheimer’s to have
a voice as long as
they possibly can.
What is the early
stage advisory group
doing?
Harry
Johns: One
of the problems as I
see is that
lawmakers have not
really fully
recognized the
impact of
Alzheimer’s disease.
Part of that is
because we do not
see the person who
has it. We all know
the devastating
effects of this
disease, but I am
afraid congress and
policy makers across
the country have not
acted in a way that
we think is
commensurate with
the impact of the
disease. At the
Alzheimer’s
Association, we are
trying to provide
care and support for
all of those
affected today and,
tomorrow before we
have the disease
eliminated, and
ultimately trying to
eliminate the
disease. We believe
it is just
absolutely critical
that we have all
these voices engaged
in the discussion.
Gary
Barg: I
think that is very
appropriate. There
is a lot of talk now
about companies
being able to
develop new blood
tests that can
identify who is
going to develop
Alzheimer’s disease.
Does the association
have an opinion on
these tests, and are
you involved in any
of these tests?
Harry
Johns:
Well, we certainly
funded some of this
kind of research,
even including some
of the things that
are in the news
right now. We played
a role in some early
funding. But our
position in terms of
the testing at this
stage is that we
need more medical
evidence before we
would recommend any
kind of specific
test, Gary. But we
are certainly
believers today that
even with the
detection tools we
have got, it is just
vitally important
that people have the
option, and we think
should take
advantage of the
option, to get the
disease detected at
the earliest stage
they possibly can,
rather than going
through a process
without knowing what
is happening to
them; without being
able to plan for
their lives, without
being able to take
advantage of the
treatments that are
available today,
even if they are not
yet good enough.
They are not as good
as we need them to
be, but they are
better than not
being treated. We
believe early
detection with the
tools now available
is very important,
and we will continue
to advance on that
front as well. We
will continue to
look at and fund
research that will
ultimately get us
the kind of testing
that would do a
better job of this.
Gary
Barg: What
interesting research
do you see on the
horizon?
Harry
Johns:
There is a lot of
interesting research
on the horizon. I am
not a research
expert, but the
people that I talk
to in the research
community are pretty
generally excited.
That ranges from the
possibilities for
earlier detection
tools to ultimately
treatments for the
disease--things like
the Alzheimer’s
disease neuroimaging
initiative that we
helped initiate and
have funded, where
we are getting
information on
biomarkers.