Joe Mahaffey’s passion for early screening and advocacy started after watching his brother Charles Douglas “Doc” Mahaffey face his own diagnosis with colon cancer. “Doc was somebody who, when he was diagnosed with colon cancer, didn’t make it about him. He made it about turning what happened to him into something that could positively impact on others.”
Joe and Doc.
It was by chance that they discovered Doc’s colon cancer when he went in to see his doctor for cardiovascular issues. It was 2010 and Doc was 50. The diagnosis would turn into six years of clear scans, preventive colonoscopies, and being told there was no evidence of disease (NED). But the cancer would always come back.
In February 2012, pain in his lower back turned into another recurrence and more surgery, but this visit would lead to a connection that would deepen the family’s involvement with colorectal cancer awareness. They met Pam Gwaltney, a patient navigator at Novant Health, and she told them about Get Your Rear in Gear – Charlotte. The following year family and friends would sign up to participate for their first time. Doc would sign up to do much more as a member of the planning committee for future races.
By May of 2016, Doc’s disease had progressed and he had exhausted all standard treatment options. Though his medical team offered him the opportunity to participate in clinical trials, Doc decided he wanted to focus on his quality of life. More treatment and clinical trials would only wear him down even more, and he wanted to spend what time he did have feeling as well as he could and maximizing time with his children and family. Doc passed away in February of 2017, and Joe was right there to pick up where his brother left off – continuing the work he started in Charlotte with the race and carrying Doc’s legacy with him.
Doc at Call on Congress.
Though Joe was always Doc’s wingman in planning for the Get Your Rear in Gear event in Charlotte, he stepped up after Doc’s passing to be more involved. He also stepped in to the role of advocate. Unbeknownst to Joe at the time, Doc had always wanted a team from Charlotte to take their local message of awareness and screening to the national level. Joe found the perfect fit in the Research Advocacy Training and Support program with Fight Colorectal Cancer. “Anne [Carlson, with the Colon Cancer Coalition] told me that Doc was always hoping someone would take the role of advocate on the Charlotte team, which is something he never told me about. I just found the opportunity organically.” It was fitting for Joe as he stepped onto a path Doc was never able to pursue during this battle with colon cancer.
Joe made the decision to be a research advocate after meeting with staffers and health care liaisons at his first Call on Congress in 2018. “The idea is that hopefully lawmakers will see that I’m coming back year after year, and bringing data to the table on how research is saving people’s lives and how advocacy is impacting people’s lives.” Joe works alongside others with Fight Colorectal Cancer who know that changing policy will change outcomes in the fight to prevent this disease.
Joe the Advocate!
Joe is also pushing to change the screening options that are available for people of all ages. Thinking about his daughters and other young adults who may have genetic and family history of colon cancer, Joe gets frustrated with the limited access to testing and screening many face. “It bugs me so much that I can walk into a drug store and buy a direct-to-consumer DNA test for $99 to find out I’m part something, but if I want Cologuard to screen for blood in my stool, it needs to be prescribed or it’s going to be close to $700. Why can’t we make these simple take home screening tests easier and cheaper for consumers to access. How do we improve screening technology so that it’s less invasive, but extremely useful?”
Joe takes passion with him to the Capital for his second Call on Congress this week (March 18 & 19, 2019). More informed and just as determined, he knows that Doc’s story and legacy will go with him as he walks the halls to meet with senators and representatives from North Carolina. And he’s not alone. He’ll have other constituents from North Carolina alongside him, and cross paths with other Call on Congress attendees representing additional states and U.S. territories that have the same drive to make change happen – change that they know will save lives by preventing this disease before it starts.
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