n 1996, Kathy Giusti was a pharmaceutical executive and mother of a toddler, when she was diagnosed with multiple myeloma, a rare form of blood cancer. With no proven treatments at the time, Giusti decided to make the most of her professional expertise and create a foundation dedicated to funding drug discovery. Twenty years on, she is now in remission thanks to a combination of new treatments the Multiple Myeloma Research Foundation helped develop, plus a stem cell transplant from her fellow cofounder: Giusti’s identical twin sister.
The outlook for myeloma looks much better today. In just one month late last year, federal regulators approved three new drugs for multiple myeloma, bringing the tally up to 10, with more in the pipeline, most of which MMRF played some role in. Giusti talked with STAT about how she helped jumpstart an industry.
Back when you were diagnosed, were you told you didn’t have long to live?
I remember the doctor looking at me and saying, “You have three years at best.” Today we can look at our patients and say you have eight or nine [on average]. Even with all the success, this is not the time to become complacent. We do not have a cure yet.
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You’ve spoken about the importance of taking a business approach to developing treatments. What does the world of business have to offer patient advocacy?
When you’re talking about generating high levels of data, asking people to give up intellectual property, putting the data out into the world to share, you’d better understand the organizational structures that will allow you to do that, and the incentives that will let everybody feel they have won. That’s business.
You encourage patients to take charge of their own treatment the way you did, but is that asking too much?
This is the role of organizations like ours. Third parties like ourselves can literally walk the patient through the journey.
Shouldn’t doctors be doing that?
Imagine how many things you’re asking your oncologist to be aware of. A knowledgeable patient is still a gift.
Can you breathe more easily now that you’re 20 years past your own diagnosis and have done so much to help others?
I never breathe easily. Not a day that goes by when I’m not on the phone with two or three patients who are out of options. I’m way too close to the patients to ever step back and become complacent. [Also,] my identical twin now has stage 3 breast cancer. My dad died of renal cell carcinoma, my mom has melanoma. I do feel a sense of obligation to help other cancers learn what we’ve done here.
How do you unwind? What are you reading now?
The book I’m reading, Paul Kalanithi’s “When Breath Becomes Air,” is about a neurosurgeon who was 37 when he died of lung cancer.
Wouldn’t a book like that give you nightmares?
It’s really scary for me to read these things at night before going to bed.
Is there one object that represents who you are today?
An hourglass sits on my desk. It constantly reminds me that time is unbelievably precious and that you should cherish every moment. When I was diagnosed, every milestone of my daughter’s life flashed before my eyes. And then I got them back. I realized that while the milestones are important, it’s really the moments in between that matter the most.