University of Vermont

Vermont Quarterly

An Impatient patient

Facing a rare cancer, alumna Kathy Giusti created a new research model

Kathy Giusti

By just about any odds, Kathy Giusti shouldn’t be here.

Once, she was a rising pharmaceutical company executive who understood both the science and the business side of her industry. Married with a daughter and a home in comfortable Lake Forest, Illinois, a sparkling future awaited the thirty-seven-year-old Giusti, a University of Vermont premed grad with a Harvard MBA.

It wasn’t merely cancer her physician was reluctant to tell her about on that painful day back in 1996, as she sped home along a Chicago expressway. It was multiple myeloma, an obscure blood cancer and little researched disease that mostly afflicted older men, often African Americans. It was nearly always fatal.

One day she was headed for the corner office, the next day none of that mattered.

So it is both surreal and unbelievable to sit, fifteen years later, with Giusti at her Multiple Myeloma Research Foundation office in Norwalk, Connecticut. Fighting to stay alive, she has transformed the way new cancer-fighting drugs come to market by bringing an aggressive investor’s approach to funding research.

“We are hugely impatient because we are just a phone call or email away from thousands of patients who have run out of options,’’ says Giusti, an athletic-looking fifty-three-year-old. “How are we going to solve that next obstacle? How are we going to execute faster and better? I don’t think that urgency ever goes away.”

Compact and vibrant, the woman with a fatal diagnosis exudes a burning intensity about the future. The opportunity of what’s still to come gushes forth, like fresh water.

She recounts the improbable story that has made her a national news story and one of Time magazine’s one hundred most influential people in the world.

The MMRF and accompanying Multiple Myeloma Research Consortium, both founded by Giusti, have served as a greenhouse incubator, raising an eye-popping $175 million in funding and pushing myeloma breakthroughs by tying industry and research together. Setting funding benchmarks, promoting collaboration, and targeting specific research has helped to lead to more than doubling the life expectancy for myeloma patients as new drugs have come to market faster.

A cell phone call from her daughter Nicole, who is finishing her early admission applications to college, interrupts the conversation. The call ends and Giusti thinks, out loud: “Will I be there to help set up Nicole’s dorm room? Will she be there, even, when a college acceptance letter arrives at her New Canaan, Connecticut, home for Nicole or her younger brother David?

“It is one thing to be diagnosed with cancer. It was another thing to be diagnosed with an uncommon cancer that had absolutely no awareness, no funding, and no hope,’’ Giusti says. “Even when they called and said I had cancer, in the back of my mind I’m thinking it’s not a bad one.”

“But then when I did the research,’’ Giusti recalls, re-telling her unlikely narrative. “I remember calling my sister, and I’m a pretty positive person. I said, ‘I can’t find one ounce of hope with this disease.’”

The prognosis was three or maybe four years. Back in 1996, this wasn’t a cancer where families and friends signed up to run for the cure. There weren’t celebrities and NFL players clad in cheery pink or hundreds of millions of dollars in research. Almost nobody fought for this cure.

In Kathy Giusti’s mind, this was a disease without a brand and a business plan. She changed all that. In the process, over fifteen years, Giusti and the foundation she started have created a new model: treat cancer research like a business, make people work together, and demand results. 

“She has brought awareness to a disease that simply wasn’t there before she got involved,” says Todd Golub, an oncologist and a professor at Harvard and the Dana-Farber Cancer Institute. Her leadership “makes a lot of things happen.”

Myeloma, or multiple myeloma as it is called when it appears in more than one location, is a fatal blood cancer that develops and grows in bone marrow. Malignant myeloma cells, transformed from plasma cells, take over, exploding in number. They crowd out other cells that produce other, vital, antibodies.  When Giusti was diagnosed, to live three years was a gift. A cure was irrelevant. The cancer always returned.

For Giusti, the immediate concern was her family and her wish to have a second child.  By the summer of 1997, she had left her job and given birth, thanks to in-vitro fertilization, to a healthy boy. Giusti moved from Illinois to Fairfield County, Connecticut, where both her identical twin sister, Karen Andrews ’80, and husband’s parents lived.

Giusti and her sister, also a UVM grad with a degree in biology, soon hatched an ambitious plan to raise money to fund myeloma research. Working closely with Karen, a lawyer with contacts in the media industry, the two sisters’ first fundraiser in Greenwich in October 1997 hit the jackpot. They brought in more than $450,000, using the money to fund an initial round of research and to form the Multiple Myeloma Research Foundation. Andrews, a senior executive with Hachette Book Group USA, remains an MMRF board member.

With her business background, Guisti realized before too long that new drugs wouldn’t be developed unless there was more collaboration and a common agenda among researchers.

“My whole frame of mind was to see if I could live out those three years. Maybe I would get it to four years so that Nicole would make it to kindergarten and she would remember that she had a mom,’’ Giusti says. “I was motivated to see if I could squeak out another six months or nine months by funding research.”

“It just became step-by-step looking at the research. Nobody was doing anything in this area at all. There was no money. The researchers have to follow the money trail. You can’t be a researcher and go into diseases that have no money because you won’t get any grant funding.”

A breakthrough came when researchers in the late 1990s discovered that Thalidomide, a sedative with a controversial history, was a promising drug for myeloma patients.

“People became interested in myeloma. It said to us maybe we should shift from a foundation focused on transplants and immune therapy … to a focus on novel drugs. That is completely our focus now,’’ Giusti says. “So that’s when we became more like a virtual biotech company. We built our own clinical network, so we could say, ‘hey, any new drug out there that wants to be tested in myeloma let’s bring them to our clinical network and let’s get the drug tested faster.’”

In essence, Giusti’s initiative speeds up the entire process, with its targeted funding and consortium of research centers that work together. The consortium now has fifteen academic institutions that publish their work jointly.

“We decide who do we need to bring together. How much funding needs to go to this area? What new drugs look good? Then we just build all that out,” she says.  “You are not funding a disease anymore. You are funding innovation.”

They are involved with thirty-one different drugs in nineteen different trials.  With its own tissue bank—and its own $40 million, one-thousand-patient study—Giusti’s foundation and consortium are increasingly driving the direction of myeloma research. Nearly half of all myeloma patients are on the foundation’s database.

“Having accountability in research is a very good thing and it’s possible we haven’t had enough of that in biomedical research. Being businesslike is a good thing,’’ says Golub, the Harvard oncologist who led the MMRF-funded sequencing of the myeloma genome.
There are significant risks, Golub admits. “It’s possible to take that business-like approach too far and squeeze out innovation and flexibility by being too rigid in one’s thinking about deliverables and so on,” Golub notes. “Kathy has been aware of that potential.”

Kathy and Karen Giusti

Decades ago, before motherhood and cancer and everything changed for better and for worse, Giusti was another UVM premed aiming for medical school. She sailed through her years in Burlington, graduating magna cum laude in 1980 and never looking back.

“I learned a great deal and did unbelievably well,’’ Giusti recalls of her time in Vermont during the late 1970s when she waited tables at What’s Your Beef and What Ales You while plotting a medical career. “It gave me a certain amount of confidence in my scientific skills. There wasn’t a time at UVM that I ever questioned my major.”

But it was her decision not to go to medical school and instead follow a business path through Harvard and then the pharmaceutical industry that set the stage for Giusti’s striking success after her fatal diagnosis.

The dearth of science was her first impression as she looked at the woeful state of myeloma research fifteen years ago.

“Back in 1996 people weren’t sitting there and taking on the science. They were doing more like support groups or brochures, more of the touchy feely. We went right to the science. That was the beginning of being different. ’’

“We are the group that has become known for designing, building, executing, refining and funding collaborative models. We decide who we think should be part of the model and how we incentivize them—with the endgame being extending the lives of patients,’’ she says. “It is our first and foremost incentive. It governs everything we do.”

Her gift, an aggressive business mind, and her curse, a fatal cancer, have changed the future for myeloma research, says Frank Douglas, a physician and MMRF board member whose career has stretched from the research lab to the executive boardroom.

“She is driven. She is a patient. She sees the possibilities,’’ Douglas explains. “She listens carefully and she is not afraid to be on the cutting edge. Most people are not willing to take risks.”

Giusti, who had a successful transplant in 2006 using stem cells donated by her twin sister Karen, remains healthy and excited about the prospect of personalized medicine, where myeloma research can provide the basis for treatment based on a patient’s DNA.

“Our ability to accelerate it and get it done quickly is going to be the driver towards learning so much more about this disease,’’ Giusti says. “I really do believe a cure is possible.” 

Indeed, the work funded by the MMRF has dramatically changed the prognosis since the day in 1996 when her doctor told her she had myeloma.

“We sit down and say based on all the new things going on in science and based on where myeloma is today, what is our next three-year priority? We don’t want to miss any major scientific opportunities.”

Four promising drugs have been approved by the FDA. Myeloma patients are living seven years and longer. There are eight more drugs in clinical trial, most of them tested through the clinical framework set up by the MMRF and MMRC. Mapping of the myeloma genome, funded by the MMRF, will likely lead to new breakthroughs.

In the midst of all this, Kathy Giusti is still here, beating the odds.

“Always in the back of my mind is the thought that I need to get another stem cell transplant. I could get incredibly sick. I could relapse tomorrow,’’ she admits. “At the end of the day. I am a woman who just wants to see my children grow.”

Giusti remains that doomed, hopeful mother, a cancer patient in remission on a mission. This is what drives her—and what is helping to change the way cancer will be cured.     

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