Patients as Drivers: A Prescription for the Future

the power of ideas 2015

Patients as Drivers:
A Prescription for
the Future
Kathy Giusti
Founder and Executive Chairman
Multiple Myeloma Research Foundation and
Multiple Myeloma Research Consortium

An experienced
patient, visionary,
and advocate
offers insights into
the cancer journey.

18

November 2015 Edition

It’s a different world than when I was
diagnosed in 1996 with the incurable
cancer multiple myeloma. Today,
thanks to advances in sequencing
technologies, we have gained
unprecedented insights into the
genetic drivers of cancer. We now
have an arsenal of breakthrough
treatments that take into account
these genetics and patients’ other
unique characteristics, personalizing
care and giving patients their very
best chance of beating the odds.
And, with access to information with
the click of a mouse or swipe on a
smartphone and the increasing
availability of digitized health
records, patients now find
themselves as vital partners not only
in their care, but also in the research
process itself—a position that has
the power to transform the

landscape more than we can
even imagine.
Despite this progress, far too many
of the estimated 1.7 million people
who will be diagnosed with cancer
this year still struggle at far too many
steps in their cancer journey. I’ve
experienced this firsthand as a
patient still in active treatment and
as a caregiver to my identical twin
sister, who was recently diagnosed
with breast cancer, and as a longterm patient advocate. Where do
patients get stuck along the way,
and what can we as patient
advocates do to help?
At the moment of diagnosis:
Patients must get up to speed
quickly not only about their disease
and its treatment options but also
where to go to receive care.