March 25, 2016

Kathy Giusti: The Cancer Patient Who Became an Advocate for Precision Medicine

By Jeff Briggs

Kathy (002)How do we make personalized cancer care a reality for more patients than ever before — not years from now, but today?

That has been the mission of Kathy Giusti since 1996 when she was diagnosed with multiple myeloma, a rare form of blood cancer.  With no proven treatments at the time for multiple myeloma, she was told by her doctor, “You have three years at best.” A pharmaceutical executive and mother of a young child, Giusti refused to accept the prognosis.

She decided to make the most of her professional expertise and in 1998 created a foundation dedicated to funding drug discovery, the Multiple Myeloma Research Foundation (MMRF). Twenty years later, she remains in remission thanks to a combination of new treatments the foundation helped develop, plus a stem cell transplant from her fellow cofounder: Giusti’s identical twin sister, Karen Andrews.

The hope was to one day find a cure for this fatal blood cancer.

But the medical research model built upon a system of competition for funding and publications wasn’t working for Giusti. When she was diagnosed, no treatment had been developed for multiple myeloma in decades, and what was available wasn't very effective.

She and the MMRF identified barriers slowing drug development, particularly in an uncommon heterogeneous disease like multiple myeloma and developed collaborative models to overcome those obstacles. Optimized to run like a Fortune 500 company, with a culture of speed, innovation, and results — the MMRF remains laser focused on accelerating new and better treatments for patients, leading toward towards a cure.

“In the not-so-distant past, all people with cancer were treated with a one-size-fits-all approach,” Giusti says.  “But thanks to recent advances in genome sequencing technologies and super computers, it’s now possible to ferret out the genetic mutations and other molecular abnormalities that underlie certain cancers. This information is one of the most important resources cancer patients can have because it can allow doctors to tailor treatments to the unique aspects of their cancer.”

This powerful MMRF philosophy has been well-proven as the most efficient way to continually speed the development of more effective treatments for patients. Its accomplishments include:

  • Establishing a multi-center tissue bank with more than 4,000 samples
  • Spearheading an initiative to map the multiple myeloma genome with world-class leaders in genomics
  • Creating the collaborative Multiple Myeloma Research Consortium (MMRC) of 21 world-renowned institutions
  • Launching the groundbreaking CoMMpass℠ Study to collect and analyze multiple tissue samples from 1,000 patients over a multi-year course, so that patients will eventually be matched with the right clinical studies and treatments
  • Building the CoMMunity Gateway, a platform to connect patients sharing sub-types of myeloma with each other and experts.

The results have been impressive. Ten drugs received FDA approval in the time it normally takes for one.  And clinical trials of many other promising therapies are now underway, including genomically-informed treatments – that is, those that target specific alterations in an individual that give rise to cancer or promote its spread – and immunotherapies, like checkpoint inhibitors and immunostimulatory antibodies, which are drugs that make use of a patient’s own immune system to fight cancer.

As the world's number one private funder of multiple myeloma research, the MMRF has raised over $300 million since its inception. It directs nearly 90 percent of its total budget to research and related programming.

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Giusti will bring this experience to her opening presentation at the 2016 Individualizing Medicine Conference: Advancing Care Through Genomics. Hosted by the Center for Individualized Medicine, the fifth annual genomics conference takes place October 5–6, in Rochester, Minn., home of Mayo Clinic.

The conference focuses on how to translate the promise of genomic medicine into better patient care. Experts in the field will offer updates on cancer research, on the latest discoveries in pharmacogenomics and what is happening with the National Institutes of Health’s Precision Medicine Initiative.  Epigenomics, the microbiome, and biomarker discovery are just a few of the topics featured in focused breakout sessions and case studies. They will take you into the details of research with some of the most knowledgeable experts in the field today.

Early bird registration begins online April 1.

Follow conference developments on the Center for Individualized Medicine blog; or on Twitter, at @MayoClinicCIM and #CIMCon16.

Tags: #CIMCon2016, center for individualized medicine, individualized medicine, Individualized Medicine Conference 2016, Kathy Giusti, Multiple Myeloma, Multiple Myeloma Research Foundation, personalized medicine, Precision Medicine, Uncategorized

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