Kathy Giusti Speaks As Part of the Welch MBA Forum

Kathy Giusti speaks during the Welch MBA Forum.  At left is Professor Stephen Brown.

Kathy Giusti speaks during the Welch MBA Forum. At left is Professor Stephen Brown. To watch video, CLICK HERE.

News Story: February 1, 2012

Kathy Giusti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF), and one of Times magazine’s “100 Most Influential People in the World” was at Sacred Heart University February 8 as part of the Welch MBA Forum. She spoke at the Schine Auditorium to a packed house of MBA candidates, faculty, staff and guests from the community.

She shared the very personal story of her battle with cancer, while also providing solid advice on how to launch a successful company – whether a for-profit or not-for-profit. Diagnosed with multiple myeloma at age 37 – an incurable cancer of the blood – Giusti’s first thought was that she did not want to leave her infant daughter without any siblings, and she wanted to live at least until her daughter was 5, so that she would have memories of her mom. Giusti proceeded to deliver a son and then went on to create the MMRF in an effort to battle her disease.

She did it using her experience in corporate America as an executive at Searle Pharmaceuticals, and she started with a strategic plan. She said her biggest challenge was convincing academic medical institutions and scientists to work more collaboratively as they were used to competing with one another for research dollars and publication space. Once she raised enough money to entice them to work together – the Foundation has raised close to $200 million – her team began its battle against the disease that doctors had told her would take her life within three years.

She told the crowd that the key to her success has been applying business principles in the not-for-profit world. “How can you raise money and talk to investors without a strategic plan? I was used to working with shareholders, so I knew I needed to report back to donors and patients,” she said. “We have the highest ratings of any disease-based not-for-profit organization in the country.”

Perhaps her biggest challenge is running a business while battling a fatal disease. “Do I wish I were more detached? Of course.  I’m never away from the cancer. I see the obits of people who have died from this disease every morning (because her clipping service marks any article that mentions myeloma). But I have an important job to do. If you don’t have people like us who will say the system is broken, that are willing to say it in a professional way, we will never change the landscape of cancer.”

Giusti’s next goal is to accelerate personalized medicine in multiple myeloma.  Critical to that initiative is building a customized, open-access IT system that will allow researchers, doctors and patients to look at patients’ clinical and genomics data and determine the best therapy for each patient according to his/her genomic profile. “We are looking for innovative partners to help us. We need companies that share our urgency and our transparency,” she said.

Because hospitals, universities, drug companies and physicians are so hesitant to share data, MMRF fielded its own study with 1,000 myeloma patients, beginning the day they were diagnosed. The study cost $40 million. “I find that outrageous. This information should be in the public domain where everyone has access to it,” Giusti said.

She said the cost of doing genomic sequencing is changing the entire landscape of health care. “It’s a lot more affordable than it used to be. In today’s world, patients will start to understand that it is their data, their tissue, their life.”

She told the MBA students that she is a big believer in MBAs – that it is something she looks for on resumes. “If you want to change the world and make a societal change, have a good base, good knowledge, good training, but also be willing to take risks,” she advised.

She confided that her dream had been to be the first woman president of a pharma company, but her diagnosis forced her to change direction. “When my circumstances dictated a change, I just went out there and did it. And I think I have made a bigger difference by doing this than if I had stayed on the corporate path.”

As for the future? Giusti said the most important thing is succession planning. “The reality is that it’s dangerous to have a fatal disease and be the face of the company. We go through succession planning at every board meeting. It’s important for everyone to know that the company is run by an executive committee.”

During a lively question-and-answer session, Giusti expressed appreciation for the thoughtful questions and also for the gratitude audience members showed for her work.

“I was faced with a death sentence and thought my child would never know me. Everything after that was a smile. I feel blessed to have gone from the lowest of the low to the highest of the high with each of my children,” she said. “There’s nothing to be sad about. I’ve had a chance to see my children grow, and I know what kind of people they are going to be. I’m scared, but I’m no longer scared that I’m leaving my children stranded.”