Hacking childhood cancer: Creating support systems

Healthcare innovators tackle how to improve the experience of those fighting for a healthy future

April 25, 2018     

Helping childhood cancer survivors is about much more than providing treatments and follow-up care. It means finding tools to help patients thrive, emotionally and physically, long term. 

“We know that young people who get a cancer diagnosis need different care models than adults, because they have to think about post-survival in a different way,” Chief Commercial Officer Murdo Gordon told an audience during a panel discussion at South by Southwest (SXSW) Conference and Festivals.

SXSW 2018

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.

SXSW 2018

Bristol Myers Squibb was elected by the public and conference organizers to present a panel as part of the Health Track, hosting a conversation on helping pediatric oncology patients and their families cope with the emotional and physical side effects of living with cancer.

"Our goal is to change the pediatric cancer landscape by working with organizations to discover innovative support systems," said Gordon.

A new way to focus on post-survival

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. 

Matthew Zchary, Murdo Gordon and Mona Zaveri at SXSW 2018

“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.”

Survival is not the endpoint

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.

Mona Jhaveri

“We need to find new ways to deal with what we have and improve upon it, not invasive treatments, no more needles, no more keeping kids away from schools and birthday parties,” Jhaveri said

Quality of life is as important as survival, according to Jhaveri.

“As leaders and innovators, we need to cultivate a new culture around cancer, where we’re talking about it and how we’re talking about what is happening,” she said.

Sound Affects is a nonprofit organization that uses a crowdfunding platform and partners with musical artists to raise funds to help support biotech entrepreneurs who are developing technologies and other solutions for combating cancer.  

The aim shared by Jhaveri, Zachary and Gordon during their panel discussion is to extend the conversation far beyond the walls of the conference.

Matthew Zchary, Murdo Gordon and Mona Zaveri

"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.

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