This cancer patient sequenced his DNA, found a trial treatment that’s working and now he’s using music to raise money for technologies that can make genomic healthcare — precision medicine — available to people fighting deadly diseases.
Told he didn’t have long to live, 46-year-old Bryce Olson is watching his prescribed expiration date shrink in the rearview mirror. Diagnosed with stage 4 metastatic prostate cancer in 2014, the Portland, Ore. resident is living proof that precision medicine can beat back a deadly disease.
“I was supposed to die 10 months ago,” said Olson in December during a recording session for FACTS (Fighting Advanced Cancer Through Songs). His music project aims to raise awareness for genomic sequencing and expand a new precision medicine trial at OHSU’s Knight Cancer Institute.
Olson sees a common thread between his genomic healthcare approach to fighting against cancer and his love for making music.
“Just how we collaborate to create and sequence music into a perfect song,” he said, “our individual DNA can be sequenced and medical and technology experts can collaborate to find a more precise treatment to manage and possibly cure disease.”
Olson, who has worked in sales and marketing at Intel since 1999, underwent “standard of care” treatments – surgery, chemo, hormone therapy – in 2014 to stop his cancer. The brutal side effects took a toll, dramatically changing his quality of life. His cancer returned with increased vigor.
He shifted swiftly to a novel, more targeted approach: Precision medicine guided by molecular testing. He got his DNA sequenced and learned everything he could in short order.
“Genomic sequencing will help guide my future treatments,” Olson said. “Unfortunately most people with cancer have no idea what specific genetic mutations are actually fueling their unique cancer growth, and not knowing that is dangerous.”
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 individual genomic mutations, health history, lifestyle and more.
DNA sequencing and other medical field advancements are helping healthcare evolve from a one-size-fits-all model to more personalized care.
The cost and processing time of gene sequencing continues to drop. 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.
More widespread use of precision medicine got a shot in the arm in early December, when the U.S. 21st Century Cures Act was passed with bipartisan support. It earmarks $6.3 billion to speed the discovery of new treatments for diseases such as cancer over the next 10 years.
“This is awesome for everyone battling cancer,” said Olson.
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 and misunderstandings about insurance coverage (Olson’s DNA sequencing was covered by insurance).
Making Cancer a Manageable Disease
Olson said precision medicine is helping him beat the odds. He believes it could soon make cancer a more manageable disease.
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,” he said. “I wasn’t expected to live longer than 21 months.”
After “standard of care” treatments he had his tumor analyzed at the Knight Cancer Institute at Oregon Health & Science University (OHSU), an international leader in cancer research and treatment.He rigorously searched and found a clinical trial in Los Angeles that would be a “fit” for his unique cancer.
Olson’s DNA data indicated that the drug being tested perfectly addressed the way his cancer grew. The trial organizers made room for him.
Fast forward to today – 21 months later, 10 months after he was expected to die. 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 OHSU 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.
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 OHSU 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 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 of MIT and Harvard, one of the world’s largest genomics research centers, is forecasting that the rise in sequencing will amount to a zettabyte (1 sextillion bytes) of data per year by 2025.
The institute recently announced a five year, $25M collaboration with Intel to help researchers conduct studies that leverage data that may have been unavailable to them before – because that data is stored on private, public or hybrid cloud computing systems.
“Our work is a step toward building something analogous to a superhighway to connect disparate databases of genomic information for the advancement of research and precision medicine,” said Eric Banks, director of the Data Sciences and Data Engineering group at the Broad Institute in a statement.
As a patient and tech industry professional, Olson has been at the epicenter of this medical field evolution. He points to Intel’s All in One Day campaign.
“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,” said Olson.“We believe this should be a human imperative by 2020.
Patient with a Cause
Olson wants to help others use precision medicine to beat their cancers – first by educating individuals then by raising money so everyone can access new treatments.
“I talk to advanced cancer patients all the time; none of them have even heard of sequencing,” he said. “Or they don’t understand enough of it to ask, so they don’t.”
When they do have genetic data, patients can turn to organizations like NCI Match to find appropriate drugs for their specific cancers.
He also pointed to Consano. “They’re like a Match.com-Kickstarter hybrid, helping fund research projects that are important to patients.”
Olson uses Consano as a platform for his FACTS project, a music fundraiser focused on expanding patient access to an upcoming precision medicine clinical trial at OHSU.
The idea for FACTS struck as Olson first went through chemotherapy. He picked up his long-neglected guitar and found that it helped him process the emotions stirred by his own mortality. He wrote songs and began recording an album with a few musician friends, including The Decemberists’ Jenny Conlee, who waged her own battle with breast cancer, and American idol contestant and Intel employee Johnas Street. Soon music legends Martha Davis of The Motels, Pete Krebs and Michelle DeCourcy, all cancer survivors, joined.
“FACTS is combining the work and passion so many people have for helping cancer patients’ access genomics and precision medicine,” he said. “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.
Olson expects the rock-n-roll album to be ready in February or March 2017, and is planning a FACTS Festival, a Coachella-with-a-cause concert that he hopes will become an annual event.
A majority of net proceeds from FACTS, including a $25,000 donation from Intel, will go to Consano.
Clearly, Olson is a man with a mission.
“I was supposed to die 10 months ago,” he said. “I’m not even close to dying yet. I’ve got a long way to go. Getting creative people collaborating and using new technologies, new approaches is what it will take to cure diseases like cancer.”
Editor’s Note: Bryce Olson will give a talk at South by Southwest titled Sequence Me: A Tragically-Uncommon Cancer Battle on 3/12 at 5:00 p.m. UCT.
Joyce Riha Linik contributed to this story.