Colon cancer is one of the most preventable cancers, and yet it continues to be the second leading cancer killer of men and women.
I am a stage three, now 17-year survivor of colon cancer, and I never should have gotten it. I had good weight, ate well, exercised. I had good insurance and a great job at the University of Texas, and did everything my doctor advised.
The reason I got it was that I didn’t know that there are different screening methodologies. What was promoted as appropriate at the time I experienced cancer, at age 50, was a stool test. I had one every year and it always came back negative. Had it come back positive, my doctor would have sent me for a colonoscopy. But it didn’t and, meanwhile, cancer was growing inside my body.
Because of my position at the university, I was invited to be on a statewide panel charged with developing a strategic plan to address the colorectal cancer crisis. It felt like it was me, a cancer survivor, and a room full of providers in white coats.
In one of the meetings, I listened as a prominent hospital official talked about a pilot project that went into an underserved community in Houston to talk about cancer prevention. Instead of preventing, he said, “we found disease.” They sent those with cancer to hospitals for treatment, but there were so many without insurance, that the hospitals refused to continue the pilot project.
That prompted me to ask, “If you don’t go back into this community, what will happen to the people? Will they be left to die?” The facilitator suggested the meeting take a break, and a local gastroenterologist approached me eyeball to eyeball and said, “The answer to your question is ‘yes.'” I left that room in tears.
Now I’m a pretty feisty person. I made it to top ranks of academe and I’m only five-feet tall. I knew that somebody had to do something about this, and wracked my brain. Whom do I know? Eventually, in my mind and my spirit, I realized I was the “somebody.”
I never set out to form a nonprofit or do anything with cancer. I was caregiver to my father who died of prostate cancer and I saw how cancer could ravage the body. I prayed to never get cancer. My prayers were answered for 20 years, and then it was my time.
The experience inspired me to create the organization, Hope Through Grace, to increase prevention, early detection and save lives. Nationwide, African Americans have the highest cancer death rate and are diagnosed more frequently with colorectal carcinoma at a later stage than other racial or ethnic groups.
We hold educational symposia in the community. We meet in churches. We do workshops for school bus drivers. We set up in the back of a post office for postal workers, we go to homeless shelters. We ask “What keeps you from getting a colonoscopy?”
Over and over, the same answers came back: no money and no time. For hourly workers, a trip to the doctor can mean being docked for pay. For others with no insurance or high deductibles, paying $8000 for the procedure is not affordable. The Affordable Care Act does provide coverage for a baseline colonoscopy, but my beloved state of Texas has declined to participate in it.
We knew we had to find a way to pay for colonoscopies. We set stringent requirements for eligibility, the main one being that the person is symptomatic and needs immediate attention. They provide evidence of their financial situation, and we help with the co-pay or connect them with a clinic that does the procedure at a discounted rate.
Prevention of cancer is a lot more economical to the taxpayers than paying for cancer treatment. And yet, a vice president at one of the charity hospitals in Houston told me, “I don’t know of anyone who would even attempt to do what you are doing.” I didn’t know any better. I didn’t know the barriers and the greatest barrier became funding.
I’m sad to tell you but I’m being honest. Over half the people we helped get screened had something going on in their colon and had no clue, from diverticulosis, to benign polyps, to full blown cancer. Even with that impact, we haven’t found enough funding to continue.
As for next steps, we are reorganizing, creating a cadre of ambassadors and health educators to help, and engaging grant writers. What we have learned is that it takes serious money to save lives, but there is no question about the benefit of what we are doing for this community.
(Grace Butler was honored as an Encore.org Purpose Prize Fellow in 2008.)