Time 100 honoree Kathy Giusti explains how multiple myeloma patients' expected lifespan has doubled from what it was 16 years ago
My personal JFK moment came on January 12, 1996. I will never forget that day. I remember where I was, what time it was, even the weather that morning when I was diagnosed with multiple myeloma. Unlike many patients who hear about the disease for the first time I knew too well what this incurable blood cancer was all about. Partially my knowledge came from running worldwide operations for a major pharmaceutical company. The other reason was this rare cancer also ran in my family—my grandfather had myeloma. To my amazement, I was being offered the same medicines to treat my illness that patients were taking back in the late 1950’s.
My future looked grim. I was happily married with a beautiful one year old girl and suddenly I was facing an uphill battle with an uncommon and heterogeneous cancer with virtually no modern treatments available and no drugs in the pipeline. I was told to get my affairs in order—I had three years to live, if I was lucky. Despite those odds, it wasn’t in my nature to pull the covers over my head and hide. With the help of brilliant partners, donors, friends and family we started the Multiple Myeloma Research Foundation (MMRF) with the hope of one day finding a cure.
That was 16 years ago. For decades so little progress had been made in the field of multiple myeloma. So, why now, over the past 10 years has there been so much progress, and why are we so equally as hopeful for the next 10 years to come?
The answer I believe lies in the myeloma community itself, which has worked skillfully to identify the barriers to cures and develop a plan to show patients and their families that the tiniest cancer is making the greatest stride as a result of this tight knit, integrated collaboration.
Today we work with the best scientists, pharmaceutical partners, biotech companies and academic centers in the world to facilitate progress in drug development. We remain eternally grateful for the work they do and the amazing trials of these pioneering drugs they produce so quickly. In the past decade myeloma patients have seen the FDA approve six multiple myeloma treatments, and counting – an unthinkable timeline in oncology. As a result, we have witnessed the doubling of our patient’s life span.
Our hope for the future is equally exciting due to the rapid advancement of technology in terms of genomic sequencing and the ability to store, integrate and share data in an open access world where patients have become more empowered in driving toward a cure.
We’re seeing today a more robust pipeline of treatments for the many subtypes of the disease than ever before. Treating patients with the precise combinations of treatments for their subtype is the way of the future. The world has changed since I was diagnosed and patients who once felt so alone now hold the key to the cure. The more we raise awareness, the faster cures will be found. And the acceleration of finding cures won’t take decades any more thanks to these new technologies. Now patients can play a major role in not only elevating the consciousness of the disease, but by providing their tissue, sharing data and entering new trials, they are transforming outcomes for themselves and for those future patients who have yet to be diagnosed.
Kathy Giusti is Founder and CEO of the Multiple Myeloma Research Foundation (MMRF), the leading private funder of multiple myeloma research.