Marty Tenenbaum is a cancer survivor who is trying to fix the system. With his nonprofit, Cancer Commons, the Portola Valley internet entrepreneur is offering cancer patients access to potentially life-saving information about the latest cutting-edge therapies and experimental treatments.
“The challenge is the clinical trial system, which sets a very high bar for a treatment to be approved,” he said, “which may make sense for athlete’s foot” but not for life-threatening, late-stage cancers.
Cancer Commons is a free, online service for people with advanced cancers that analyzes their cases and recommends trials, or experimental, off-label treatments that might be right for them. It’s not meant to replace their medical care or treatment plans, but to augment them by giving people access to information they and their doctors might not otherwise have.
If there’s “a drug that helps a few people, the right thing to do is to get it into the toolkit of the physicians, and let them start playing with it,” Tenenbaum said, and the quicker the better when it comes to cancer.
Cancer Commons is funded by donors, among them Tenenbaum, who made his fortune in the early years of web commerce. His commitment is based on personal experience: He had a bout of life-threatening skin cancer himself and participated in a drug trial for an experimental treatment. Overall, the drug trial failed, but Tenenbaum did respond to the treatment. It seems counterintuitive, but Tenenbaum said it’s not uncommon.
“Many drugs help a few patients, but not enough to get approved,” he said. “That’s a bug in the system.”
The experience changed his life.
“Not only did I have a disease which was ‘unsurvivable’ at the time, but then I bet my life on a clinical trial on that disease which failed. That’s enough to give anyone religion,” he said. “And I basically made a pivot: I decided to commit the rest of my life and career to using my skills as an AI [artificial intelligence] guy and an internet entrepreneur to trying to beat cancer.”
He set up Cancer Commons in 2011 for people like him, who have exhausted traditional treatments and might find salvation in some unusual combination of medications or experimental therapy.
“[Patients] seek us out,” said Erika Vial Monteverdi, Cancer Commons’ executive director, “because oftentimes these treatment options beyond the standard of care aren’t communicated, and they generally struggle with finding their path forward.”
People who sign up deliver their medical records to Cancer Commons, which assigns a researcher to develop a report about trials and treatments that might help.
“We pride ourselves on providing patients with an actionable plan, meaning that we do the research on their specific case,” Monteverdi said. “The research is customized to their goals and preferences and what they’re trying to achieve. We hire Ph.D. scientists who have experience in these cancer types, that understand their case.”
She said Cancer Commons’ intent is to help doctors who might not have time to keep up with every new study or test out there.
“This is information for patients to discuss with their treating oncologist,” Monteverdi said.
Cancer Commons isn’t the only service that offers second opinions, but Brad Power, a cancer survivor and patient advocate who has used the service, said what sets it apart is that it is free. It’s also virtual, with no need to travel.
“You don’t need to physically be near the research centers,” he said.
He also said the fact that Cancer Commons is not affiliated with a hospital or clinic means there’s no financial motive, “which clouds a lot of what happens in health care.”
Cancer Commons’ main funder is Tenenbaum, who said that since its founding, around 10,000 patients have used the Mountain View-based service. At first patients found it through word of mouth, including recommendations from rabbis, Tenenbaum said. The cost per patient, estimated at $500-$1,000, is covered.
“No patient has ever paid for any services from Cancer Commons,” he said.
Tenebaum also sees Cancer Commons as a data-gathering organization. Patients might be helped by some combination of drugs, but if researchers and other cancer sufferers don’t know about it, the information is lost — and so are lives.
That means scaling up is necessary, increasing the number of patients and patient data in the system. It means more partnerships, like the ones Cancer Commons has with the American Cancer Society and groups that advocate for treatments for brain, pancreatic or lung cancers. And, Tenenbaum admits, it will mean more fundraising. But that’s part of his vision for the future of his nonprofit.
“Research done for one patient might help 10 other patients, or a thousand other patients,” he said.