Hacking childhood cancer: Creating support systems

Gordon represented Bristol Myers Squibb last month at this premiere gathering of the country's most innovative companies and disruptive thinkers presented annually in Austin, Texas. While SXSW may seem an unusual arena for a biopharmaceutical company, it helps to understand the scope of the festival and why Bristol Myers Squibb was there.

Gordon attended for a very specific reason: Helping childhood cancer patients is one of Bristol Myers Squibb’ priorities. 

“We’ve decided as a company to get much more engaged in the younger population to help provide solutions where there might not be any today,” he said.

This is only the second year that health has been a part of the extensive SXSW program. What began as a music and film festival expanded dramatically in recent years. With Mercedes Benz and Bud Light as two of the leading sponsors, SXSW has evolved into a giant networking platform that exposes attendees to a range of new ideas, products and people.

The panel presented by Bristol Myers Squibb was "Hacking Childhood Cancer: Creating Support Systems," with Gordon hosting two panelists, Matthew Zachary and Mona Jhaveri, Ph.D. Zachary is the CEO and founder of Stupid Cancer, a leading young-adult cancer advocacy, research, and support group. Jhaveri is executive director and founder of Sound Affects, a non-profit organization that uses a crowdfunding platform to support cancer solutions. 

“The majority of young teens and children survive a cancer diagnosis, but at that age there’s so much more to what that word ‘survive’ means and how they become functional, rehabilitated, productive citizens of this country,” said Zachary.

The panel dissected one of the most difficult issues facing pediatric cancer care today: how to improve the experience of those fighting for a healthy future. The panelists discussed unique ways to support “the consequence of cure” - as referenced by Zachary - for young oncology patients. 

At 21 years old, Zachary was diagnosed with brain cancer and given a prognosis of six months. That was 22 years ago. As a survivor of pediatric cancer, he uses his experience to help create support programs for young patients undergoing treatment today. The Stupid Cancer app helps young patients learn more about their disease, connect with peers who have a similar diagnosis and discuss their concerns.

“I wish there had been a lifeline or young adult program to help guide me and coach me. I started Stupid Cancer to be what I wished I’d had when I was diagnosed with cancer.” Zachary said of his younger years.

Zachary thinks that creating a platform for shared experiences and digital content improves health outcomes for the young adult cancer community by ending isolation, building community, providing education and fostering meaningful relationships.

“The imperative is patients are still consumers,” Zachary said, “Through our app, we push information directly to the oncology consumer and create a trusted patient community.”

It is crucial for innovators to find ways to make the care offered today more comfortable, which would include reducing painful procedures or creating ways to avoid isolation and keep children connected to the outside world, Sound Affects’ Jhaveri said.

"There’s value in educating the public and broader culture about pediatric cancer in order to influence change," Zachary said.

According to Gordon, it’s clear there are improved technologies and support systems available to help young oncology patients, but there is still a long way to go.  

"There’s a lot of innovation that can still happen to help with the gaps in the patient journey, and I think these platforms and technologies discussed here will go a long way to helping patients beyond just treatment," Gordon concluded.