Guest blogger Max Wallace is the CEO of Accelerate Brain Cancer Cure (ABC2), a Case Foundation partner organization.
Last Tuesday, the ABC2 team attended a hearing of the FDA’s Oncologic Drug Advisory Committee in Silver Spring, MD. The Committee was there to consider the application by Genentech seeking accelerated approval for the drug Avastin to be used in treating recurrent brain tumors, and we were there to speak and provide support for the application. This story isn’t about us, though, it is really about Steve Thompson.
By the time Steve had the chance to rise to the podium, the focus of the meeting had shifted to intricate science topics. Throughout the morning session scientists presented slide after slide of clinical trial data and statistics. Rather than discussing the impact of brain cancer on patients and families, the discussions were centered on the reliability of MRI scans as true clinical end points. However, it was Steve’s story about his daughter Krista’s battle with brain cancer that brought the urgency of the issue into focus.
In 2004, when Krista was 13 years old she was diagnosed with brain cancer. Up until that point, she was living a normal healthy teenage life. Steve recounted the shock of learning about Krista’s diagnosis and the frustration he felt as a parent when he learned there were so few treatment options available. Unfortunately, Krista’s brain cancer progressed, but it was at that time she was placed in a clinical trial program and given Avastin, a new drug designed to limit the growth of blood vessels around tumors. Upon being given her first dose, Steve said he could see Krista regain her energy immediately. She lettered on the varsity swim team and received honor roll grades on her report card. In short, her life returned to normal. Even though Krista ended up losing her battle with cancer last October, Avastin allowed her to live the last year of her life with exuberance.
Standing next to Steve throughout his presentation was BethAnn Telford who is a brain cancer survivor and Iron Man tri-athlete. BethAnn embodies the spirit of seeking the joy of being alive and living life to its fullest as much as anyone I’ve met. She and Steve are a true inspiration, and I truly appreciate their participation in the FDA hearing. Without their stories, the proceeding might have been viewed as a bureaucratic exercise, but they brought it to life and made us all remember why we were there. Beyond being strong advocates for the brain tumor community, Steve and BethAnn are also raising money for cancer research through the Race for Hope, which will be held on May 3 in Washington.
By the time the FDA panel was asked to comment on the proceedings it was clear Steve’s comments made a big impact. One panelist explained that while survival data is important, we shouldn’t lose sight of the importance of providing patients with a high quality of life. The panel went on to vote unanimously to recommend approving Avastin, representing the first time in 10 years such a new brain cancer drug would be approved.
Listening to Steve it became clear to me that while the ultimate goal of ABC2, the organization I run, is to find a cure for brain cancer, we shouldn’t lose focus of the value which can be derived from finding ways to improve the quality of patients lives.
Photo: Steve Thompson is pictured in the center and BethAnn Telford is on the far right of the photo above.
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