Kathy Giusti was diagnosed with multiple myeloma in 1996, when she was a 37-year-old executive at the drug company G.D. Searle. She was told she had three years to live.
Twenty-eight years later, Giusti, 65, is thriving. One reason is the patient advocacy group she founded in 1998: the Multiple Myeloma Research Foundation. The group has raised more than $600 million for research, launched nearly 100 clinical trials, and helped bring more than 15 new drugs to market. That includes Revlimid and Velcade, bedrock treatments that Giusti herself took. Between 1998 and 2004, the five-year survival rate for the disease has increased from 33% to 61%, according to the MMRF.
That’s striking progress for a relatively rare cancer that is diagnosed about 35,000 times a year in the U.S., meaning drug companies were initially less interested in developing therapies. Thanks in part to better treatments that help patients stay alive, the number of people in the U.S. who live with myeloma has increased 80% to 180,000.
Yet when Giusti sat down to write a book about her experience and to give advice to other cancer patients, drawing on nearly 30 of her own personal journals, her first instinct was not to feel a sense of triumph — it was to offer apologies to her husband, her daughter, and her son for the toll her work and her illness had taken on their lives.
“I’ve had every resource you can imagine,” Giusti told STAT. “I have a great family. I have great friends. I had good insurance. I had everything I needed to do it right. And even I messed up. A lot.”
Others might disagree. “We would not be where we are today in the treatment of multiple myeloma without Kathy’s leadership,” said Richard Pazdur, the Food and Drug Administration’s top oncology regulator. Her book, “Fatal to Fearless,” was blurbed by everyone from newsman Tom Brokaw to research scientist Eric Topol.
“That she took everything she knew about the pharmaceutical industry, having been part of it, and has really built a powerful advocacy for multiple myeloma patients, is remarkable,” said Tony Coles, who was CEO of Onyx Pharmaceuticals, a myeloma-focused biotech, from 2008 to 2014.
