Kathy’s Story

I will never forget the doctor looking at me and saying, “I’m sorry, you have cancer.” And not just any cancer, one of the lousy ones with a weird name and no reliable treatments. Three years to live. Incurable. No grey.

It was 1996. I was 37, with a career and a one-year-old. I panicked. I wept. I fumed. When you know you’re going to die, the cruel reality changes everything. The moments I would miss as a mother, wife, sister cascaded before my eyes. But then something snapped. I went from WTF? to WTD? (What To Do?)

The thing about a death sentence is it gives you instant clarity. What matters? What doesn’t? I started to write down what was most important to me: a letter to my young daughter, Nicole, in this ridiculous green journal with a flower on it. Page one: more time, beat the odds, make it to kindergarten. Page two: having a baby, leaving my husband Paul with a second child, Nicole with a sibling. And then … leaving all three of them safe, cared for. That meant moving closer to my sister, a new home, a new job – starting a foundation.

“I wrote a letter to my daughter, in this ridiculous green journal with a flower on it.”

What I didn’t realize at the time is that my personal quest to find a cure – steps I took to protect my husband, my child – would begin a 25-year crusade to disrupt and galvanize a bureaucratic and deeply broken healthcare system, not only changing the course of my life but the lives of so many others facing a fatal diagnosis.

In 1998, I founded the Multiple Myeloma Research Foundation (MMRF). There we were first to establish a collaborative tissue bank, first to sequence the myeloma genome, first to build a clinical network, first to drive data to the public domain, and first to directly share data with patients. Our work has led to 15 new FDA-approved drugs and has increased life expectancy for patients from the three years when I was diagnosed to ten years today.

Then in 2015, I was asked by the Dean of Harvard Business School to Co-chair the Kraft Precision Medicine Accelerator (KPMA) and drive precision medicine across all disease. We convened more than 300 thinkers, doers, and disruptors on the front lines of business, scientific, and social change to answer one question: how can we bring better treatments to patients faster?

The promise of today’s science to change lives is truly amazing. And nowhere is it more amazing than in cancer: targeted therapies, immunotherapies, blood biopsies. But the hard truth is that the system remains badly broken. And fighting your way through it can be its own kind of death sentence. The greatest fear that lives in the hearts of patients is to know that a new drug out there is working… that a new field could be curative… but they may not live long enough to get it. That is a petrifying kind of terror. But I am living proof that if you take the right steps, you can buy yourself time. And with today’s science, a year can buy you a lifetime.

kathy giusti and her younger children

It’s been more than 20 years since I started writing to Nicole in that pink journal. Today I have over twenty journals, one for every year I never expected to live. And I’m still writing. I didn’t just see my daughter go to kindergarten, I saw her go to college and to graduate school. I didn’t just change careers, I moved closer to my sister, my rock – my biological and soul mate. And my daughter Nicole, my husband Paul and I got to go together to my son David’s soccer games, his baseball games, and his college graduation.

kathy giusti and her family at son's graduation

I am incredibly proud of what we all have achieved and am blessed to have a phenomenal, supportive family. But the fight continues. I face my own mortality every day, with every test result, just as every cancer patient does. And I continue to push for change where it’s needed most. To fix what is broken so others may heal. And to simplify the journey for others, so they can heal themselves.

“Today, I have over twenty journals, one for every year I never expected to live.”

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