Photographs by William Taufic.
Organization
Multiple Myeloma Research Foundation (MMRF), Multiple Myeloma Research Consortium (MMRC)
Inspiration
At age thirty-seven, Kathy Giusti was diagnosed with multiple myeloma, an incurable blood cancer. “There was hardly any research going on,” says Kathy. “I was told I would live three years, four at best. There was very little room for hope.
“I was the mom of a one-year-old girl when I was diagnosed, and I had a son shortly after. I was going to do anything I could to be there for them,” explains Kathy, who had more than two decades of experience in the pharmaceutical industry at G.D. Searle and Merck. “I could at least jumpstart research, so that the next generation would have more promise than I did.”
Courage in Action
In 1998, Kathy founded the MMRF, with a mission to establish innovative, collaborative research models in tissue banking, genomics and clinical trials. “I knew it took ten years to get a drug approved,” says Kathy. “I didn’t dream we’d make such progress or that I would be alive today.”
Currently ten new drugs for myeloma have been approved by the FDA. “We had four approved last year alone,” she says. “We’ve tripled the life span of the patients we serve.” Kathy is now recognized as a pioneer of precision medicine, a champion of open-access data sharing and a strong advocate for patient engagement. She has been honored as one of three top disruptors in health care and one of the World’s 50 Greatest Leaders by Fortune magazine, as well as one of TIME magazine’s 100 Most Influential People in the World. In 2016, Kathy was named faculty cochair of the Harvard Business School Kraft Precision Medicine Accelerator.
Hopes & Dreams
“Many patients are doing well,” says Kathy, “but there are high-risk patients. There’s an urgency to make sure we have options for every patient. The greatest area of focus today is making sure all data is shared openly and freely, in the public domain for all scientists to share.” The result is progress across all cancers.
“I want to touch as many lives as I possibly can.”
“My kids are now twenty-two and nineteen,” adds Kathy. “I feel incredibly blessed. I hope no one has to experience this cancer. Moving forward, we need to focus on preventing cancer.”