Dick Parsons, the former Citigroup chairman and Time Warner CEO, has tackled everything from the world’s most scrutinized media merger to serving as chairman of the Rockefeller Foundation. But about a year and a half ago, Parsons was forced to stare down one of his biggest challenges to date: a diagnosis of the rare blood cancer multiple myeloma. And now, Parsons is one of the very people assisting the vital research that could one day lead to a cure for the disease.
Multiple myeloma affects plasma cells and can leave patients anemic while attenuating their ability to fight off infections. Parsons was always at a higher risk for the condition as an African American male—of the 30,000 multiple myeloma diagnoses made every year in the U.S., 6,000 are for African Americans, and the condition also affects men in greater numbers.
There is currently no cure for multiple myeloma. Parsons’ disease is being kept in check through chemotherapy, he tells Fortune in a video interview. But 10 new therapies for the cancer have been approved in the past 10 years. And that’s been made possible by the efforts of people like former G.D. Searle and Merck (mrk) executive Kathy Giusti, whose own multiple myeloma diagnosis in 1996 spurred her to create the Multiple Myeloma Research Foundation (MMRF).
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The MMRF has a simple thesis when it comes to cancer research: the more data that’s centralized and publicly available, the better. The organization runs studies like the ongoing CoMMpass trial, in which Parsons is a participant. In the study, MMRF tracks multiple myeloma patients’ cancers over the long term (through diagnosis, remission, and relapse) by sequencing their specific cancers’ genomes multiple times.
That’s important because cancers can mutate, and knowing the genetic specifics of a patient’s cancer is key to matching them with—and developing—the most effective and personalized treatments possible. “If you don’t pool the tissue, the data, the findings, you will never, ever find a cure,” Giusti told Fortune in a video interview. “We put [all the information] in the public domain, every bit of data from our CoMMpass trial goes into the public domain.”
For more about Giusti’s work at The MMRF, watch:
MMRF has already sequenced more than 1,000 patients, producing what Giusti says is the second largest genomic dataset in America today. And while it’s always been Giusti’s approach, the democratization of data is now also a central pillar of the Obama administration’s precision medicine and cancer moonshot initiatives.
In fact, just last week, the National Institutes of Health (NIH) and the Department of Health and Human Services (HHS) finalized new regulations that will penalize federally-funded medical researchers who don’t post their clinical trial data to a public, national database in a timely manner.
The new rules build on other efforts under the cancer moonshot, which is spearheaded by Vice President Joe Biden. “Imagine if you all worked together,” Biden told more than 30,000 scientists, investors, and biopharmaceutical company executives while announcing a new Genomic Data Commons cancer database at the American Society of Clinical Oncology (ASCO) conference in June.
That level of collaboration could be key to tackling cancers of all shapes and forms and vindicating clinical trial participants like Parsons who may not see a cure within their lifetimes. Of the more than 1,000 patients sequenced by MMRF, 200 have already died, Giusti notes.