After taking a personalized approach to healthcare and using genomic data to fight cancer, one man is helping others step into the age of precision medicine.
When Bryce Olson was diagnosed with stage 4 metastatic prostate cancer in 2014, he underwent the traditional ‘standard of care‘ treatments – surgery, chemo, hormone therapy – and managed to hold the disease at bay. These approaches helped stop the cancer, but the side effects were brutal and his quality of life suffered tremendously.
After Olson’s cancer returned with increased vigor, he opted for a novel, more targeted approach that forced his cancer into submission without the devastating and unnecessary chemo-associated sickness: Precision medicine guided by molecular testing.
Molecular testing of cancer, otherwise known as genomic or tumor sequencing, is part of a new era of healthcare called precision medicine. This customized approach to healthcare lets providers tailor treatment to an individual’s unique needs, taking into account the genomic sequencing of their cancer, health history, lifestyle and more.
“Precision medicine gives us one of the greatest opportunities for new medical breakthroughs that we have ever seen,” President Obama said after introducing his Precision Healthcare Initiative in January 2015.
Already, he noted, lives are being saved. Patients with leukemia saw white blood cell counts return to normal because a new drug was able to target a specific gene, and genetic testing for HIV helps doctors determine the right candidates for a new antiviral drug.
As healthcare continues to evolve from a one-size-fits-all model to more personalized care, access to precision medicine will increase. The cost and processing time has come down significantly. When the first human genome was sequenced two decades ago, it took 13 years and cost approximately $3 billion.
Today, the process can be completed in roughly a day for around $1,000.
But a lot of patients still don’t know that it’s available to them.
“Providers aren’t proactively offering the diagnostic tests to figure out what is fueling the disease,” Olson said. He pointed out a variety of factors, including a lack of time for practitioners, lack of training in genetics for oncologists, misunderstandings about insurance coverage (Olson’s DNA sequencing was covered by insurance).
Making Cancer a Manageable Disease
Olson hopes that precision medicine will lead to a time when cancer becomes a manageable disease. Thanks to genomic sequencing, he may live to see that happen. He’s already beaten the odds.
When Olson was diagnosed, he was just 44 – more than 20 years younger than the average age for prostate cancer diagnosis, according to cancer.org – and the cancer had already metastasized. He was given a five-year survival rate of just 28 percent.
“My doctors told me they thought my prostate cancer was one of the fastest growing they’d ever seen. I wasn’t expected to live longer than 21 months.”
Olson, a global marketing director for Intel, as well as a husband and father, didn’t want to sit by as “standard of care” treatments – approaches that had been developed decades ago – failed him.
He went to the Knight Cancer Institute at Oregon Health & Science University (OHSU), an international leader in cancer research and treatment, to have his tumor analyzed.
“We found out that my cancer uses a cell-signaling pathway that the standard care wasn’t even touching,” he said.
DNA data in hand, Olson found a clinical trial in Los Angeles that would be a “fit” for his unique cancer.
Though the trial was already full with advanced cancer patients, Olson was the only one who had sequencing data that indicated that the drug they were testing was a perfect match to address the way his cancer grew.
The trial organizers made room for him.
Fast forward to today – 16 months later, five months after he was expected to die – and Olson is the only one from that study still on the drug. Today, he has no evidence of active disease.
Sharing the Data
One of the goals of precision medicine is to share data – so that doctors in Cleveland can learn about what’s worked for doctors in, say, Helsinki.
Today, Olson’s data is uploaded into the Collaborative Cancer Cloud, a precision medicine analytics platform developed by Intel and the Knight Cancer Institute. It allows institutions to securely share genomic, imaging and clinical data to better understand the root causes of cancer and accelerate potentially lifesaving discoveries.
But it’s a lot of data to store and move around.
The human genome – its complete set of DNA – contains molecules made out of two paired strands (the twisting ribbons shown in illustrations of DNA). A person’s genome contains approximately 3 billion of these base pairs which reside in the 23 pairs of chromosomes within the nucleus of all our cells. Each genome contains an estimated 30,000 genes.
“Right now, we’ve sequenced a couple thousand cancer genomes,” said Dr. Brian Druker, director of the Knight Cancer Institute and the researcher behind the development of Gleevec, the first molecular-targeted drug able to kill cancer cells while leaving healthy tissue unharmed.
“We need to take that up to a million or more cancer genomes,” he said. “But the amount of data we’re going to have to collect and sort through is actually mind-boggling. We really need enormous compute power to discern what is going on in cancer.”
Not only does technology need to analyze and store this massive amount of data, it has to perform the analytics. It has to string together all of the DNA data, align it, compare normal cells with tumor cells and find the molecular differences that drive each person’s unique cancer.
The Broad Institute, one of the world’s largest genomics research centers, is forecasting that the market will generate 1 zettabyte (1 sextillion bytes) of data per year by 2025.
That means the industry needs a new way to manage its big data.
Eric Dishman, who – as manager of Intel’s Health & Life Sciences group – testified before a Senate subcommittee on precision medicine last year, noted that multiple threads need to come together in terms of both building the technical infrastructure and advocating for deep patient engagement.
“It’s really about behavior change and patient engagement – meaningfully engaging individuals in their own care and that of their families,” said Dishman, who was instrumental in developing Intel’s Connected Care Program for employees.
Dishman, now the director of NIH’s Precision Medicine Initiative (PMI) Cohort Program, knows from personal experience. He was diagnosed with two rare kidney diseases at age 19. After turning to precision medicine and undergoing a kidney transplant in 2012, he is now cancer free.
As precision medicine becomes the norm, getting treatment should be faster and easier.
Intel’s All in One Day campaign aims to create an ecosystem where a patient can go to the doctor, get a diagnosis and walk away with a personalized treatment plan.
“We believe this should be a human imperative by 2020,” said Olson. “If you’re suffering from some disease, you should be able to get that discovered and diagnosed by DNA and then progress to a targeted treatment plan within 24 hours.”
Patient with a Cause
As for Olson, he’s intent on helping others use precision medicine to beat their cancers. The first step, he said, is education.
“I talk to advanced cancer patients all the time; none of them have even heard of sequencing,” he explained. “Or they don’t understand enough of it to ask, so they don’t.”
“They’re like the Match.com for people with cancer to get on clinical trials with new drugs,” said Olson.
To help spread his story, he organized a music fundraiser called FACTS (Fighting Advanced Cancer Through Songs) to raise awareness and bring molecular testing to advanced cancer patients who need financial support.
When going through his initial treatment, he picked up a forgotten guitar and playing it helped him process the emotions of confronting his own mortality.
He wrote an album’s worth of songs and recorded an album with a few musician friends, including The Decemberists’ Jenny Conlee, who waged her own battle with breast cancer.
Olson is currently recruiting singers who have been touched by cancer to provide lead vocals on the album with the goal to publish in January 2017.
“More voices brings more power against the fight. I think this will be the first album written by a cancer survivor, sung by other artists directly impacted by cancer, and used to fund cutting-edge tests to help people with cancer,” he said.
Proceeds from the album along with individual and corporate donations will go to Consano, a non-profit crowdfunding platform for medical research. Olson envisions FACTS extending into a FACTS Festival in 2017, a kind of Coachella-with-a-cause and hopes it will become an annual event.
Clearly, Olson is a man with a mission.
“I was supposed to die five months ago,” he said. “I’m not even close to dying yet. I’ve got a long way to go.”