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.