Kathy Giusti Of The Multiple Myeloma Research Foundation (MMRF): “Brené Brown has been an inspiration for her directness”

Brené Brown has been an inspiration for her directness. In her book Daring Greatly, she talks about vulnerability as “uncertainty, risk, and emotional exposure” — that feeling when we step out of our comfort zone. I was in a meeting the other day that got really tense. I said to the person running it, “I’m sorry, but […]

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Brené Brown has been an inspiration for her directness. In her book Daring Greatly, she talks about vulnerability as “uncertainty, risk, and emotional exposure” — that feeling when we step out of our comfort zone. I was in a meeting the other day that got really tense. I said to the person running it, “I’m sorry, but I’m feeling incredibly defensive and uncomfortable.” I would never have said that a year ago. I love how directness can help make a difference.


As a part of our series about women who are shaking things up in their industry, I had the pleasure of interviewing Kathy Giusti.

As Co-Chair at the Harvard Business School Kraft Precision Medicine Accelerator, Kathy is working with disruptive leaders across the healthcare ecosystem to revolutionize and accelerate business models in precision medicine. As Co-Founder and Chief Mission Officer of the Multiple Myeloma Research Foundation (MMRF) and a patient herself, Kathy knows firsthand how to bring a community together to drive toward cures. It was at the MMRF that Kathy first drew on her extensive experience in the pharmaceutical industry to build collaborative models and align incentives, always with a focus on the patient.


Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”? What led you to this particular career path?

I grew up outside Philadelphia. My father was a doctor, my mother a nurse, so I felt I was already in the healthcare industry at a very young age. I was one of four kids born in just three years, possible because I have an identical twin. In my family, there was a strong emphasis on always moving forward. If anyone ever sat idle, they were given a job to do.

In college, I majored in pre-med and was accepted to medical schools, but decided not to enroll. Instead, I took a sales and marketing job at Merck. I went to Harvard, got my MBA, and then went to Gillette to learn the consumer side of marketing. I always felt that the business of healthcare was where I’d make a difference, so I joined Searle, where I was running worldwide operations, when I was diagnosed with multiple myeloma, in 1996.

In 1998 I founded the Multiple Myeloma Research Foundation, and I later had the good fortune to send my myeloma into remission, thanks, in part, to bone marrow from my twin sister, Karen, and to getting access to the right treatments that became available. In 2016, I was appointed the Faculty Co-Chair of the Kraft Precision Medicine Accelerator at Harvard Business School.

Can you tell our readers what it is about the work you’re doing that’s disruptive?

With my work in healthcare, I had a deep understanding of the business, but when I became a patient, suddenly I had a window seat to how incredibly challenging the healthcare system was to navigate. I went from getting a diagnosis to calling my sister and saying, “What just happened? And WTD (What To Do)?” It’s a devastating transition.

I quickly noticed that not all diseases were getting their fair share of attention or funding. Diseases like myeloma that are relatively uncommon — or diseases that skew older or impact African-Americans — were neglected. There were no new drugs in the pipeline for them.

My experience and research led me to focus my efforts in two places.

First, I’m using my voice to articulate where and why the healthcare system is broken. It’s a complicated system shaped by many different needs and incentives.

Second, through my work at the MMRF, I am doing a lot of things first. When we realized that tissue was indispensable “gold” for developing cures, we built a national tissue bank. When we saw the future of genomic sequencing, we became the first to sequence our genome. When we saw the importance of collaborative clinical trials, we built the first clinical network. When we saw the importance of data sharing, we were out front with a study to provide researchers with truly rich data on 1,000 patients.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

Around 1985, Veronica Lewis was my first boss at Gillette. She took a red pen to every single thing I ever wrote. She was super direct and told me to always be prepared and speak up. She would lead meetings and she would run the show, looking at commercials and creative, and she would chime in at just the right moment. Since I was so junior, I played no role. Then one day, she started by asking me to share my ideas — and I had nothing to say! I wasn’t prepared! It was torture. The entire creative team just stared at me, and I had nothing. Funny in retrospect, but I never, ever let that happen again.

We all need a little help along the journey. Who have been some of your mentors? Can you share a story about how they made an impact?

At Searle, there was a formal mentorship program. The interesting part of the story is that each of us in the program were told to write down who we wanted to mentor us. Everybody else said, “I’ll take my manager” or “I’ll take someone in market research.” Not me! I said, “I’m taking the CEO, Al Heller!” I was shocked that nobody else tried. So, he became my mentor and taught me the importance of rotation. I told him, “I want to be the first female president of a pharmaceutical company,” and he guided me. He told me to do things like learn to run a sales organization. I did every rotation he suggested, and I was on my way, until I got sick.

My second mentor is Dana LaForge, a classmate who became the chairman of the MMRF. He’s an amazing listener with a remarkable ability to manage governance. Some board situations can be challenging, and without him, I never would have gotten all those firsts done. He was literally watching my every move, encouraging me to take the risk, and backing me at board meetings: “She’s going to get this done; let’s support her.” His ability to serve as board chairman and to drive our mission forward makes me a much better leader.

Richard Hamermesh, my fellow co-chair of the Harvard Business School Kraft Precision Medicine Accelerator, is my third mentor. His advice to me has been to look outside healthcare. While I always found value in listening to different voices, that meant learning from organizations focused on other diseases. Richard helped me to think differently. He’d push us to look at other companies, including studying Netflix, Rent the Runway, and Facebook — which allowed me to think more strategically and creatively. I learned a lot from him to broaden my horizons.

In today’s parlance, being disruptive is usually a positive adjective. But is disrupting always good? When do we say the converse, that a system or structure has ‘withstood the test of time’? Can you articulate to our readers when disrupting an industry is positive, and when disrupting an industry is ‘not so positive’? Can you share some examples of what you mean?

I think disruption is always positive when it’s measured. The beauty of good disruption is forcing yourself to measure it.

Thinking through what measurements matter is also important. At the MMRF, I could measure how much tissue we’re banking, and how many genomes we’ve sequenced. But, at the end of the day, what mattered most was how many new drugs we got to market and how much longer our patients are living. To be able to reflect on the 15 drugs we’ve shepherded through approval — tripling survival — that’s what motivates the team, and that’s what motivates partners to work with us.

Can you share 3 of the best words of advice you’ve gotten along your journey? Please give a story or example for each.

Right away, I think of Nitin Nohria, Dean of the Harvard Business School, who always backed me on daring to lead. When it came time for him to organize leadership of the school’s new Kraft initiative, he reached out to me and encouraged me, by saying, “You can be bigger and bolder if you just embrace the challenge.”

Other important advice came from Elie Wiesel, the Holocaust survivor. He was also a myeloma patient, and I had the joy of sitting at his kitchen table with him. I would go to his house, and he would share advice softly: “If you have a voice, speak up — wisely and thoughtfully.” He was a remarkable example that you don’t have to be the loudest person in the room, as long as you believe in your convictions.

Brené Brown has been an inspiration for her directness. In her book Daring Greatly, she talks about vulnerability as “uncertainty, risk, and emotional exposure” — that feeling when we step out of our comfort zone. I was in a meeting the other day that got really tense. I said to the person running it, “I’m sorry, but I’m feeling incredibly defensive and uncomfortable.” I would never have said that a year ago. I love how directness can help make a difference.

We are sure you aren’t done. How are you going to shake things up next?

Next up is driving disruption for the patient — making healthcare practical and accessible. The practical starts even before a diagnosis, for example, having a good primary care physician and knowing your family history. I help people understand how to go about these things.

The part of accessibility I’m focusing on is disparities. It’s crazy how hard it is for a lot of people out there to get access to high-quality drugs and treatments. Quality care needs to be fair and accessible to us all. In my disruptive way, that’s where I’m headed.

When I was diagnosed 25 years ago, things moved slowly, so taking action quickly didn’t matter. It’s not like that anymore. Today, if you don’t know what to do, you can lose your life. A clinical trial could be open, an edited gene through CRISPR could be available, anything could be out there. But, you need to act quickly. Once you’ve started, you’ll figure the rest out.

In your opinion, what are the biggest challenges faced by ‘women disruptors’ that aren’t typically faced by their male counterparts?

I immediately think of “hard edges.” What I mean is, sometimes I have strong opinions. I don’t have strong opinions about everything, but when I do, and when I have reason to have confidence about my point of view, I express myself. Occasionally, it has been suggested that I soften my edges, and I’ll sometimes say, “Why do I have to? I have a point of view. Can’t I say it?”

For me, it goes beyond being “a woman with hard edges,” because I had a death sentence at age 37 and because I believe another could be uncovered at my next physical. I live my life with intensity, purpose, drive, and urgency. I don’t have time to mess around or soften.

Credit: Brilliant Studios

Do you have a book/podcast/talk that’s had a deep impact on your thinking? Can you share a story with us?

I love Grit, by Angela Duckworth. Her argument — that achieving success is really up to you — meshes with my priorities. Suleika Jaouad ‘s powerful memoir Between Two Kingdoms — about her journey with cancer — rings so true. I loved The Code Breaker, Walter Isaacson’s biography of Jennifer Doudna. Her work is so inspirational. I also enjoy Adam Grant’s podcast “WorkLife.” He has such a great “think like a scientist” approach.

I aim to balance what I read and listen to with some self-exploration. For example, I enjoy Glennon Doyle’s podcast, “We Can Do Hard Things” because of her deep thinking.

You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

Helping patients to know what they could be missing and empowering them to cure themselves are everything I stand for because there’s a real vacuum of practical advice.

Even with all my experience, navigating the healthcare system is still a challenge. Most recently, my mom had a stroke. She’s now using a walker, and I find myself on the phone with a neurologist, then a cardiologist, then her physical therapist. She had another mini stroke, and we’re bringing her back to the ER where she stays way too long, and then I’m wondering what I’m doing in the ER, and why can’t they admit my mother? The healthcare system is just so screwed up, and I know this sounds familiar to so many. If I struggle with it, how can others get it done? While it’s impossible today, we’ll make it change.

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

I always say, “Just do it, and do it now!” Tomorrow is not a given. I advise people to make a move quickly, do their best, and then, if they need to shift, they shift. The worst decision is no decision. When people sit around saying, “Well, I could do this, or maybe I could do that,” I remind them that they are doing nothing. Which traces back to my childhood, of course. Never sit idle. Never, ever.

How can our readers follow you online?

Website: https://www.kathygiusti.com/kathys-mission

Twitter: @KathyGiusti

Instagram: @kathy.giusti

Facebook: @KathyGiustiMMRF

LinkedIn: @KathyGuisti

This was very inspiring. Thank you so much for joining us!

This was very inspiring. Thank you so much for joining us!

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