Kathy Giusti: The Woman Who Challenged Multiple Myeloma

At the time, multiple myeloma, a rare and understudied blood cancer, had few effective treatments and almost no research momentum.

“The chemotherapy I was offered was the same chemotherapy my grandfather had received,” Giusti said. “Nothing had changed.”

What followed was not a career pivot as much as a calculated intervention.

A workplace fundraiser by her colleagues at G.D. Searle evolved quickly. With her twin sister, Karen Andrews, she formalized the effort into the Multiple Myeloma Research Foundation (MMRF) in 1998.

“The money raised was moved out to a 501(c)(3). I was a reluctant entrepreneur,” Giusti said. “I did this kicking and screaming because I was dying. I wanted to take care of my family, and I resolved to approach this as a business problem.”

Kathy grew up in a small town outside of Philadelphia, the daughter of a physician and a nurse. At a young age she was interested in following her parents’ footsteps into the healthcare field.

When she received her acceptance letter to Jefferson Medical School, her father’s alma mater, she clearly recalls, “He ripped it up right in front of me and said ‘I don’t want you to do this. Medicine is changing. It’s very bureaucratic, and I think you would do much better in business.’”

She deferred to her father’s wishes and went into the pharmaceutical industry, which gave her a keen ability to assess the shortcomings of the resources available to confront her new diagnosis.

Her first analysis of the field: it lacked capital. Without grant support, few scientists built careers in myeloma. The MMRF began raising and deploying funds strategically—balancing major donors, events, and corporate partnerships.

Under Giusti, the MMRF has raised more than $600 million to fund research, more than 15 drugs have been FDA-approved to treat multiple myeloma, and many clinical trials remain underway. These efforts have accelerated the pace at which treatments are brought to patients and more than tripled patients’ survival rates.

“What I learned is how you spend your money is really important, but how you raise it is important too,” Giusti said. “We would have one-third of our money coming from major donors, one-third coming from events, and then one-third coming from corporations.”

The second barrier was biological understanding, primarily because researchers lacked access to high-quality tissue samples. This led MMRF to create a collaborative tissue bank, paying for samples and standardizing collection to accelerate study.

As genomic sequencing advanced, the foundation helped sequence the myeloma genome and later launched the CoMMpass Study, a large, longitudinal effort to collect genomic and clinical data from patients over time. Rather than relying on institutions to share information voluntarily, the MMRF made a radical commitment to create its own data infrastructure, making it open-source and broadly accessible. The organization also developed a national clinical trials network to speed enrollment and drug testing. These revolutionary efforts played a key role in the MMRF’s ability to move research along at a faster pace.

“Tissue and data are gold,” Guisti said. “If we wanted progress, we had to build the model ourselves.”

Over time, MMRF expanded into venture philanthropy, investing in biotechnology companies to encourage them to pursue myeloma therapies. Public-private partnerships and early data access agreements helped fund large-scale initiatives institutions could not easily support alone.

Raising capital proved to be the most persistent challenge.

Myeloma is less common than many other cancers, with approximately 36,110 new cases diagnosed each year, accounting for almost 2% of new cancer cases in the U.S., according to the American Cancer Society.

Anyone can get multiple myeloma, but it affects men more frequently than women, with Black people being diagnosed twice as often as people in other racial or ethnic groups. Additionally, Hispanic people are diagnosed with myeloma at a higher rate and earlier age than non-Hispanic white people; and over half of the people diagnosed with multiple myeloma are 65 or older.

The MMRF’s strategy was to align incentives across sectors. Academic centers were seeking publications. Pharmaceutical companies needed efficient trials and regulatory approvals. Regulators required reliable data. By designing collaborative models that addressed those incentives, Guisti positioned MMRF as a neutral convener in a field divided by competition.

Over the next two decades, the myeloma treatment landscape shifted. Numerous new drugs were approved, survival rates improved significantly, and for many patients the disease became a chronic condition rather than an immediate death sentence. Giusti was treated with some of the therapies her foundation helped accelerate, and she later underwent a stem-cell transplant using hemotopoietic (blood) stem cells donated by her identical twin.

The work expanded beyond research.

The MMRF built a patient navigator program to help patients address questions about their diagnosis, treatments, cost of and access to high-quality care, and clinical trial access. Giusti equates MMRF’s work as a whole as “putting our own healthcare system on top of a very broken healthcare system” to integrate the care they need across the vast system.

“The toughest questions are right at the beginning. What exactly do I have? Who should lead my care? Am I covered,” Giusti noted. “The ability for patients to integrate the care we need across a vast system is difficult. You’re bringing in a medical oncologist, a surgical oncologist, your transplant physician, radiation oncology, insurance companies.”

She credits the navigation system as being a huge support in moving myeloma patients from diagnosis through treatment to survivorship.

Giusti later served as a senior fellow at Harvard Business School, sharing the MMRF model across disease areas. She has argued that open data, cross-sector collaboration, and the strategic use of venture funding can accelerate progress in other cancers and complex diseases.

When she tells her story, she acknowledges the personal cost of operating in a state of constant urgency, and points to the tremendous support around her that kept her focused, including: her husband, who was with her for every appointment; her twin sister, who was her emotional crutch and cheerleader; and her young daughter.

“It’s hard to balance saving your life with living your life,” she said.“On the personal side, I learned a lot about my own urgency and the challenges that my urgency had on my own family. I was always pushing for a cure, and I did not set up any barriers to be honest with you. I was working 24/7. I think when I started writing my book, it was a time for me to reflect on a lot of things I missed and, probably, things I would have done differently.”

In 2024, she published Fatal to Fearless, a book outlining practical steps for patients navigating a fragmented healthcare system. The book is the culmination of years of informal advising, as patients across cancer types reached out to her seeking guidance on testing, specialists, clinical trial options, and advice.

“The book has been a huge lifesaver for patients sitting in fear, not knowing what the first step to take is,” Giusti said.

Giusti was given three years to live. Nearly three decades later, she continues to work in the field that once offered her almost no options.

Her approach has remained consistent: identify the bottleneck, recruit decision-makers, align incentives, and fund the gap.

So too has her why. She has been able to see both of her children marry, and she continues to live life to the fullest.