Fifteen years ago, there wasn’t an organization dedicated to a comprehensive approach to addressing colon cancer. As we celebrate our 15th anniversary, we’re proud to be leading the charge to knock colon cancer out of the top three cancer killers. Over the years we’ve seen increased screening rates, the approval of several new colon cancer fighting drugs and millions invested in lifesaving and supportive programs. In fact, in 2013 alone we invested $3.9 million in prevention, research and empowerment programs, providing hope to nearly one million patients, survivors, caregivers and advocates.
As we reflect, we turn to one of our founders and current board chairperson, Kevin Lewis, who celebrated his 50th birthday this year. His passion for our mission to knock colon cancer out of the top three cancer killers is unwavering and his personal connection to this disease runs deep.
You’ve been with the Colon Cancer Alliance since the start. Can you tell us a little bit about what things were like in the beginning?
It started with 41 of us, who met on a listserv for colon cancer on ACOR.org. Back then, we didn’t have online communities like MyCCASupport.org or Facebook - this was the only online outlet available for those of us to connect.
When the owner of the listserv passed away, it spurred us to action. He’d always had this dream of an entire organization that supported those affected by colon cancer, a place where people across the country could turn to and find hope.
We were a diverse group of people who had been touched by the disease. We all walked a different path to get there – but we had passion. With his vision and money out of our own pockets, we decided to make it happen.
Can you talk about your own connection to colon cancer? What does turning 50 mean for you?
I’ve had to have a different prevention regime throughout my life than most. 16 years ago I found out I carry a genetic mutation called Hereditary Non-Polyposis Colon Cancer (HNPCC). This gene puts me at up to an 80% chance of getting colon cancer. Which means, I’m certainly no stranger to the screening process; I’ve been having annual colonoscopies since I was 34. I am currently the oldest person in my family that has the gene but hasn’t had cancer. Even my brother was diagnosed with colon cancer last fall.
Turning 50 for me means continuing to stay on top of my health and not getting what I was programmed to die from.[caption id="attachment_2078" align="aligncenter" width="560"] Kevin Lewis (middle) with brother Kelly and Colon Cancer Alliance staff at last year's Pocono Undy Run/Walk.[/caption]
When you started the Colon Cancer Alliance with the other founders 15 years ago, did you think it would become what it is today?
15 years ago, no one really knew about colon cancer and the need for screening. In 2000, when President Clinton declared March as National Colorectal Cancer Awareness Month, it was a BIG deal. Then Katie Couric went on live TV and had a colonoscopy. Slowly but surely, people have started to talk about this disease. Looking back, we had high hopes for the Colon Cancer Alliance, but never would have dreamed that what we started as a few volunteers working out of our basements would turn into the leading prevention, research and patient support organization for those affected by colon cancer.
As the years have passed, we’ve seen many changes in how the world perceives and addresses colon cancer. I mentioned Katie Couric as one example, but one of the most important successes I’ve seen is the general public becoming more invested in overall health. People have questions and are actively being proactive. They’re seeing that there are things you can do to prevent this cancer and they’re finding their voice through events like our National Conference, advocating on the hill, participating in an Undy Run/Walk, Dress in Blue Day, the Never Too Young campaign, etc.
For patients, new drugs and new therapies are instilling a new kind of hope in those affected. When we started in 1999, 5-FU was the only chemo drug to help colon cancer patients. Today, there are 10 approved drugs as well as better radiology and surgical options that help patients become cancer free. And on the research front, every day we are getting a better and better understanding of the correlation between genetics and colon cancer.
Recent studies say that only 1 in 3 adults who should be screened have been. What’s your message to the outliers – the defiant bunch?
First and foremost, get screened. And if one of these outliers is your mother, your father, a brother, a friend, etc., don’t be afraid to make a big deal about this. Screening isn’t something we can put off waiting for the polite opportunity; it can literally save your life. Secondly, a colonoscopy isn’t the only answer. You have other options – from blood tests to virtual scans. Talk to your doctor and the find the test that is right for you.
We still have more work to do. If you were to ask the public to do one thing to move this mission forward, what would it be?
It’s time to take things to the next level. We’ve seen amazing progress in the past 15 years, but it’s not enough.
Get screened! Talk about it. If there are people you know that need to get screened – encourage them to do so. Learn your family history. Don’t settle for “it will never happen to me.” We have to keep going to fight this cancer head-on and it’s going to take arming yourself with information and a willingness to take a stand and talk about things that can sometimes make us uncomfortable.
Trust me, as someone who gets a colonoscopy every year, there are things I’d rather spend my time doing. But nothing is more important than my health and making sure that I’m around to walk my daughter down the aisle and see this cancer knocked out of the top three cancer killers.
Thanks to the leadership and stewardship of Kevin, the commitment of our volunteers and community partners, and dedicated staff – there is no telling what the future will hold. Here’s to 15 more years of progress. And don’t forget, the Colon Cancer Alliance serves as a source of information about colon health. If you have questions or are in need of support, please contact our free Helpline at (877) 422-2030. We’re here to help!