How One Woman Used Her Multiple Myeloma Diagnosis to Fuel the Search for a Cure
(Health Magazine) – After being diagnosed with multiple myeloma, Kathy Giusti started the Multiple Myeloma Research Foundation (MMRF), a nonprofit organization, to help accelerate the search for a cure.
How did your journey with multiple myeloma begin?
At 37, I was living my best life, happily married, had a beautiful 18-month-old daughter, and was enjoying my career in the pharmaceutical industry. That’s when I got the call that I had multiple myeloma. My first reaction was, “What is it?” It wasn’t like somebody was saying breast cancer or leukemia. And then I realized it was one of the most fatal cancers out there. The life expectancy was three years, and without any drugs in the pipeline, there wasn’t any hope that I would do better than that. So I started writing journals for my daughter so that she would remember me and everything that we were doing together. I had to make this decision: Was I going to live like I was going to live, or was I going to live like I was going to die? And I decided to go with the first. Now, at 63, I’ve filled 25 journals and have two beautiful children.
Why did you start the Multiple Myeloma Research Foundation?
My grandfather had multiple myeloma many decades before me and I was being offered the same things that he had been on. So in 1998, I decided to start the MMRF with my identical twin sister, who was an attorney, so that we could focus on accelerating new treatments and building a pipeline of new drugs and therapies. Fast-forward and we’ve helped accelerate 14 drugs to FDA approval for multiple myeloma by speeding up clinical trials. And our patients are now living at least three times longer than when I was diagnosed. So it’s not three years. It’s more like living a decade.
Which of the MMRF’s initiatives are you most proud of?
The foundation was the first to develop its own collaborative tissue bank and the first to sequence its own genome in myeloma. And recently, the organization developed the CureCloud research study, the first at-home genome testing program for multiple myeloma patients. We already have nearly 600 patients in the study. Now, we’re focusing on addressing health disparities. When it comes to myeloma, I think that disparities are the result of a gap in precision medicine [medicine that uses information about one’s genes, environment, and lifestyle to prevent, diagnose, and treat disease]. We have to build trust within minority communities again and incorporate minorities into our registries for gene sequencing to find better solutions and treatments for everyone.
What’s your advice for newly diagnosed patients?
One: Research reliable sources. Start with dot-orgs, not dot-coms. So many people don’t realize there’s a foundation specifically for their disease. Second, find a specialty doctor who treats what you specifically have, because often you’re going to the local hospital and they have no experience in your disease. Third, know your precise diagnosis. It’s not enough to know you have multiple myeloma—you need to know your stage or your subtype. Fourth, pursue cutting-edge trials and treatments, because the science is changing all the time. And finally, share your data. Make sure you get into a registry. If you just focus on those five steps, you will be on the right track.