Advocacy

Why the Pediatric Cancer Dream Team Incorporates Patient Advocates into the Research Process

by St. Baldrick's Foundation
October 16, 2019

“I’m an accidental tourist in the childhood cancer world,” says Patrick Sullivan, who chairs the Patient Advocacy committee for the St. Baldrick’s Foundation — Stand Up 2 Cancer Pediatric Cancer Dream Team. “It’s not a place I’d ever thought I’d be in, until I heard that my son had rhabdomyosarcoma in 2007.”

Patrick and Finn in slide.
Patrick Sullivan and his son, Finn.

Patrick’s role is more than just tourist, though. When the Pediatric Cancer Dream Team was created, its goal was to push the envelope, to marry the emerging fields of genomics and immunotherapy to create targeted therapies for cancers. It was also important to the Dream Team to involve patient advocates, to inspire and work alongside the researchers, to maximize the Dream Team’s success. Along the way, each researcher was paired with a young investigator on the team, to help the advocates better understand the science and to help the young investigators better communicate their work to families and the lay public.

Patrick’s Story Is Shaped by His Son’s Death

Patrick is based in Vancouver, British Columbia, Canada, and his son passed away from rhabdomyosarcoma, or RMS, on October 9, 2008. RMS is a cancer of the soft tissue and its treatment has changed very little in the past five decades. “When we were told that Finn had rhabdomyosarcoma in 2007, our doctors told us he had a 70% chance of survival, and in order to get there, they were going to treat him with three chemotherapy agents: vincristine, actinomycin, and cyclophosphamide. If he had been diagnosed in the 1990s, the 1980s, or the 1970s, we would have been told the same thing. If he had been diagnosed today, he would still be told the same thing.”

Patrick continues: “Because of what is bubbling up from the Dream Team, treatments are changing. Patients are alive today because of the types of immunotherapies that have been discovered as part of this team. Other patients with Ewing sarcoma, which has a very similar treatment protocol to RMS, will survive in the future because of immuno- therapy approaches that the Dream Team is moving forward today.”

His role on the Dream Team is not only to help change the results for future children who are diagnosed with cancers like RMS, but to help bring the perspective uniquely found in families who have been faced with a diagnosis. Each Patient Advocate represents a specific member institution of the Dream Team — Patrick is aligned with the BC Cancer Agency in Vancouver — and, while the advocates learn from the researchers, they also endeavor to share what they learn with others.

Patrick explains that his role is, in part, “to try and understand the science. We will never be scientists, but we have an important role in understanding it so we can translate it to the public.” He says that he realizes that technical cancer treatment information is probably something those not touched by cancer may tend to gloss over: “We’ve been fighting this war on cancer since the 1970s.”

But, Patrick says, “the reality is that we’re in a golden age of cancer research.”

“Finn Didn’t Fail Treatment; Treatment Failed Finn”

Patrick hopes that his work with the Dream Team can lead to brighter futures for other families that are faced with a diagnosis like Finn’s. “Finn didn’t fail treatment; treatment failed Finn. And what is incredibly exciting about this team – and being involved in it – is we’re a part of something that will change that. So that with the next kid like Finn, science doesn’t have to fail him.”

To learn more about the Dream Team, you can also visit the Stand Up To Cancer web page, where you’ll see information about the Pediatric Cancer Dream Team and other Dream Teams.

To get involved with St. Baldrick’s Foundation, click here for more information about events near you.

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