Kathy Giusti: Cancer Warrior

August 14, 2014, 11:15 AM UTC
Michele Taylor pick-up
Photograph by Christopher Lane For Fortune Magazine

When Kathy Giusti learned in 1996 that she had multiple myeloma, a rare blood cancer, she was told she couldn’t expect to live much more than three or four years. Two years later Giusti, a pharmaceutical executive with Searle at the time of her diagnosis, started the Multiple Myeloma Research Foundation. Now six new drugs are approved for treatment of the disease, and the MMRF played a role in advancing all of them, with more in the pipeline. Life expectancy for many patients has doubled. Giusti, who has been in remission since a 2006 stem cell transplant from her twin sister, talked recently with Fortune about fixing the cancer research system, lessons for leaders, and more. Edited excerpts:

Why has your foundation been so much more effective than most other disease-focused charities?
Because we run it like a business. I took all the business practices I learned at Merck, Gillette, and Searle and brought them to this nonprofit entity. I knew we had to establish a vision. We had to write a strong strategic business plan, and we were very disciplined about that. I had to find the absolute best partners and team to work with us and then execute not only flawlessly but also urgently for the patients we were representing. The cancer research system was broken, and somebody had to fix it.

What was wrong with it?
It was built ages and ages ago. Back in the day, it was fine to say all our scientists are going to work in their single areas, and we’re going to ask them to continually publish to get promoted and to fill out cumbersome grants to get funding. Those things are not exactly nimble, and research is changing so quickly now. We were creating all these islands, and in a very uncommon cancer we needed collaboration in a desperate way. Every medical center would see a handful of myeloma patients, so you’d never have one center doing enough to make a big difference. We had to bring them together.

And you found a way to do that?
We did. We started by building the first centralized tissue bank in multiple myeloma, and today that tissue bank houses 4,000 samples for all of our scientists to use. Once we had this high-quality tissue, which is the name of the game in cancer research, we called the Broad Institute and TGen [Translational Genomics Research Institute] and said, “We want to sequence our genome.” We were the first to sequence our own genome in myeloma.

What are the lessons for leadership?
The most important thing a leader can do is set the vision and don’t stray. We said, “We are a research foundation. Our mission is to accelerate cures.” Many times people came in and said, “Why don’t you try this on the advocacy side,” or “Do this on the policy side.” Every time, we came back to, “We are a research foundation focused on new treatments and cures.” That tunnel vision helped us tremendously.

Any lessons for thinking about one’s own life?
Every time I go back to the Dana-Farber Cancer Institute to wait for my test results, and I wonder if I’ve relapsed or if I’m doing okay, I don’t think about my company. I’m proud of everything we’ve done, but at the end of the day it comes back to family. I’m still a wife, a mom, a sister—all of those things. If I’ve learned anything, it’s to live in the moment, and the gift that cancer gives you is, you just assume I’m only here today, and I am going to seize that moment and cherish it.

WATCH: Kathy Giusti discusses how to fix a broken medical system

This story is from the September 1, 2014 issue of Fortune.

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