Kathy Giusti founded the Multiple Myeloma Research Foundation after being diagnosed with the disease in 1996. As head of worldwide operations at a major pharma company at the time, she was horrified by the lack of drugs in the pipeline for her deadly "orphan" cancer. John Quackenbush is the director of the Center for Cancer Computational Biology at the Dana-Farber Cancer Institute and CEO of the startup GenoSpace, which provides tools for genomics research. Senior editor Linda Tischler sat down to hear about their new collaboration to upend cancer research.
Fast Company: Kathy, how are you feeling?
Kathy Giusti: I'm happy to say that I am in remission. That R word is something critically important to cancer patients, especially in a disease like myeloma. But I never lose sight of the fact that there is another R word called relapse.
Has your work at the foundation helped you defy the odds?
Giusti: In 15 years, we've raised $225 million, sequenced the myeloma genome, and opened 45 trials of 23 drugs—six approved by the FDA—which have doubled the life span of multiple myeloma patients. I've taken both Velcade and Revlimid, which we helped develop. But I was also incredibly fortunate to have an identical twin sister who was the donor for my stem-cell transplant. The combination of those things really helped me.
John Quackenbush: It also helped that you were a pharma insider and knew what did and didn't work. Often, what's most important is being able to figure out where the problems are and work around them.
Giusti: The number-one problem is that data is kept within the walls of the academic centers and within companies.
Quackenbush: We've created a culture in research where we don't want to share data, where the incentive is not to make it available to anybody who could use it effectively. It's not a community striving toward a solution.
Giusti: If patients knew this, they would be beside themselves. The system and the incentives are really, really broken.
What are the incentives?
Quackenbush: In the academic world, it's publication, promotion, and grant funding. Sharing data dilutes your ownership and recognition. On the commercial side, it's who can file the patent, get the drug to market, and hold the exclusive rights for the longest period of time. In both cases, people realize that, especially with rare cancers, the populations of patients they have access to are not big enough, but they're afraid to share data. The truth is, people have published a lot of garbage that hasn't had a big impact on clinical care. The studies tend to be too small, and there aren't easy ways to replicate them because you don't have access to the samples and the data.
Giusti: The hardest part of launching CoMMpass [a 10-year study involving 50 cancer hospitals to collect and analyze genomic data from 1,000 multiple myeloma patients and target treatments based on each patient's unique genomic markers] was that if you wanted to participate, you had to be willing to give up intellectual property. We had a lot of trouble getting the academic medical centers to agree. But the community centers that don't have to publish started enrolling.
Meanwhile, John was building a system that lets researchers securely analyze raw genomic and clinical data.
Quackenbush: When we first approached Kathy, we were thinking about two things. The first was that the data from sequencing a human genome is so large. Your genome is 3 billion bases long. [Base pairs are the building blocks of the DNA helix.] It's a tremendous amount of data, not something for an Excel spreadsheet.
The second thing is that your genome is uniquely yours. We have this myth in biological research that we want anonymous data. Well, guess what? Once I have your genome, you're no longer anonymous. But that genome is much more valuable if I know who you are, what treatment protocol you're under, and if I can follow up with you over the years. We realized we would need to encrypt that data so that researchers could extract only the information they need in a very secure way, just like your bank.
Giusti: So we spent two years amassing gorgeous, pristine data on myeloma patients, but what's the point if people aren't using it? We needed a way to put all of the data into a system so that researchers, clinicians, and bioinformatics specialists could use it. Late in our search for a partner, we saw what GenoSpace was doing and went, "Oh my gosh, this is amazing, amazing technology."
Quackenbush: It was like The Graduate—we ran to the church.
Giusti: John was intensely patient-focused and willing to talk about the barriers that we saw too. That was really important to us. We believe the power is shifting to the patient.
Quackenbush: We're now in a beta test, downloading this great data.
Giusti: We'll launch in late summer or early fall.
What's the incentive for cancer centers to participate?
Giusti: The director of the multiple myeloma program at Mt. Sinai Hospital in New York said the initiative is leveling the playing field, meaning that many centers can now get up to where a Dana- Farber or the Mayo Clinic is.
Quackenbush: Also, we are coming to understand that cancer isn't just a disease of a particular tissue. It's a molecular disease. And drugs that work in myeloma may work in colon cancer or breast cancer, if you have the right mutations.
Giusti: In myeloma, we found the BRAF gene [which, in its mutated form, causes cancer]. We were surprised to also find BRAF in melanoma. So all of a sudden, you've got a discussion going on between a myeloma group and a melanoma group. That's the world of oncology moving forward: It won't really matter what kind of cancer you have anymore. What's really going to matter is what you look like genomically.
Quackenbush: So two or three years down the road, tens of thousands of patients across the country could become part of this large data resource, and help drive innovation. What we're doing is putting in place the incentives for other diseases to join, right?
Giusti: Exactly. Now imagine all cancers doing this. Imagine the network we're creating and the conversation we're creating.
Has there been pushback?
Giusti: [Laughter] Oh, endless. This has been a nightmare. I always say, the greatest cost of leading is the cost of paving the way.
Quackenbush: If you think about the scientific revolutions that have occurred in history, they've been driven by one thing—the availability of data. From Copernicus to quantum mechanics, it's data that drives innovation.
[Photo by Erin Patrice O'Brien]
A version of this article appeared in the May 2013 issue of Fast Company magazine.