By Michael Shaw
InteliHealth News Service
Katie Couric, America's best-known advocate for colorectal cancer screening, has been talking up cancer prevention for more than two years. What has the experience taught her?
"What shocks me most is how common colon cancer is and how little the general public knows about it," she says. Colon cancer is the second-leading cause of cancer-related deaths for both men and women, yet it is the least discussed of all of the major types of cancer.
"I was surprised to learn from talking with many, many people around the nation that people just don't know they should get tested for colon cancer. Also, women seem to think colon cancer is a man's disease. It's not. Women have colons just like men, and they get colon cancer in nearly the same numbers as men."
Couric said a common misconception is that only people with a family history of colon cancer need to get tested.
"More than half of colon cancer cases are found in people with no family history," she says. "My husband had no family history, and he died when he was only 42 [Couric's husband, Jay Monahan, died of colon cancer in 1998]. That's why we say everyone should get tested."
Where It Began
Couric is the co-founder of a national organization dedicated to raising awareness of colorectal cancer screening and research, the National Colorectal Cancer Research Alliance (NCCRA).
The idea for the organization first took shape in 1998 during a lunch between Couric and Lilly Tartikoff, nationally known cancer fund-raiser and widow of television executive Brandon Tartikoff, who died from complications related to Hodgkin's disease.
"We were just checking up on each other, as we had both lost our husbands recently to cancer," Couric says. "She has always been a true crusader in the fight against cancer, and literally said to me, 'Katie, we've got to save the colons!'"
The two women joined forces with Lisa Paulsen of the Entertainment Industry Foundation (which runs several programs to promote health awareness) and launched the NCCRA. Corporate sponsors of the NCCRA include Aetna (founding sponsor), Bloomingdale's, the National Association of Chain Drug Stores, and Merck.
"We're planning to continue as long as there's a need to tell people to get tested for colon cancer," Couric says.
Beyond Her Wildest Expectations
Couric describes the achievements of the NCCRA as "amazing" and "beyond her wildest expectations."
"When we first looked at doing something we weren't quite sure exactly what about colon cancer, no one was talking about it. We weren't sure of the reason; because no one wanted to talk about it, they were too embarrassed, or no one was leading the charge."
The NCCRA quickly proved to be an effective health-advocacy organization. "The American Gastroenterological Association surveyed its members after the first month of the NCCRA's work," Couric explains. "Out of a thousand gastroenterologists who responded, three out of four reported dramatic increases in the number of patients screened for colon cancer. They also reported an increase in detecting polyps, representing lives saved purely by the power of awareness. That's really all it takes to make a difference with this disease."
Remarkable Achievement Mixed With Regret
Couric reflected on her role as a celebrity health advocate. "I'm pleased to hear that people think I'm making a difference. But I really wish this had not fallen to me. If only someone had told my family about the importance of colonoscopy, or the signs which suggest you should get a colonoscopy at a younger age, then perhaps my husband Jay would be alive today, along with a great number of the 60,000 mothers, fathers, brothers and sisters who die from this disease every year. There simply is no need for this disease to claim anywhere near that many lives. For each family, each one of those cases is a devastating tragedy."
More Work To Be Done
Couric points out that the job of raising awareness about colorectal cancer screening is far from over.
"A tremendous number of people who should be getting screened still aren't," she says. "These include people who are over age 50, people who have any of the few symptoms of colon cancer, or people whose immediate family members have had colon polyps or cancer."
Not Quite Over The Embarrassment
Couric maintains that embarrassment about body parts remains the biggest obstacle to screening.
"People are uncomfortable talking about having someone check 'down there' for problems. I'll be the first to admit that it isn't something people are likely to bring up at dinner, or at a cocktail party, but it should be discussed in the context of a person's health," she says. "People should ask their friends and loved ones about it. We owe it to each other to ask about colon cancer screening and take it upon ourselves to be screened. I realize it isn't pleasant, but as anyone who saw my own colonoscopy could see, it wasn't that bad, either. It sure beats trying to play the odds by not getting screened."
Colonoscopy Enters Millions Of American Homes
Couric is referring to a famous television broadcast of herself undergoing a colonoscopy. More than any other single event, this broadcast brought the importance of colorectal screening to the consciousness of the American public.
"I have received tens of thousands of letters from all over the country from people saying that my televised colonoscopy helped to demystify the procedure. That's really what I had hoped it would do. It also generated quite a bit of attention for the whole colon cancer cause not just the NCCRA, but for colon cancer as a disease. That, too, is what I'd hoped to do," Couric says.
Removing Roadblocks To Research
Part of the mission of the NCCRA is to assist medical researchers in their quest to find better tests, treatments and a cure for colorectal cancer. Recently, the NCCRA, in cooperation with Pharmacia and Pfizer, launched the Clinical Trials Resource Center. One goal of the resource center is to help scientists find people willing to participate in research studies of experimental diagnostic tests and treatments, called clinical trials. This will help scientists advance their research at a much faster pace.
The resource center will provide a database of people who are willing to participate in clinical trials. Accredited researchers, after receiving approval from the NCCRA's medical advisory board, will be able to use this database to find participants for their research studies.
"While the NCCRA has raised millions of dollars for the latest colon cancer research, sometimes studies are held up because of a lack of participants," Couric explains. "The goal of the Clinical Trials Resource Center is to demystify the clinical-trials process and encourage more people to sign up for clinical trials."
Getting People Involved
Scientists need participation from people with colon cancer and people without the disease but who have close relatives with colon cancer or with polyps (potential precursors to colon cancer, see Screening: It Works! )
"This research could be one of the critical keys to unlocking why some people develop cancer and some people do not," Couric says. "It can only be done if healthy people consider enrolling in studies to determine how and why they stay healthy.
Consider The Source
Largely thanks to Katie Couric, public awareness about colorectal cancer has skyrocketed. In addition, an incredible amount of information about the disease is now available on the Internet. How can a consumer deal with confusing, perhaps conflicting information and get the best guidance regarding screening?
"As I hope we all know,' Couric says, "there are no checks and balances on the Internet, which makes it very important for a health-care consumer to consider the source of information before deciding how much of it to believe and whether to act upon it.
"Traditional medical institutions have a big role to play in delivering health-care information over the Internet. These traditional medical institutions must make sure the information contained on their sites is accurate. Consumers who view their Web sites must know the source of the information and if there are any potential inaccuracies."
Nevertheless, Couric sees value in the proliferation of consumer-health information over the Internet. "Of course," she says, "the patient is never going to take over the role of a doctor in making health-care decisions. However, patients can now take the initiative to become informed about diseases such as colon cancer."
A Final Message
Couric can reach millions with her message about colon cancer screening, but she believes all of us can have an impact by talking to loved ones about this life-or-death topic. "Colon cancer screening needs to become as routine for everyone as mammograms are for women these days and with the same amount of family and peer pressure placed on those who aren't getting screened when they should."