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Why cancer is so hard to fight in rural Kentucky

March 25, 2016 at 6:30 PM EDT
Cancer is epidemic in eastern Kentucky, a result of medical illiteracy, limited access to care, unhealthy lifestyles and poverty. In fact, life expectancy in the region is five years shorter than the rest of the nation. But state health officials are aiming to change that with comprehensive prevention and education initiatives. Special correspondent Jackie Judd reports.
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JUDY WOODRUFF: But, first, poverty has had a persistent grip on Eastern Kentucky for generations. Its residents are poorer and less educated than any other region of Appalachia, and the impact on health is unmistakable. Life expectancy there is five years shorter than the rest of the nation.

Special correspondent Jackie Judd reports on efforts to turn that around.

JUDY WOODRUFF: There are a few certainties in Sam Wilson’s hardscrabble life, bluegrass that sustains him, and cancer that he expects will kill him.

SAM WILSON, Cancer Sufferer: I was laid up with cancer and didn’t know it, in my bladder, kidney, prostate, some in my bowels and colon.

JACKIE JUDD: In Eastern Kentucky, Appalachia, cancer is epidemic, and has been for decades. The highest-in-the-nation rates are fueled by a toxic combination of poverty, medical illiteracy, limited access to care, lifestyle choices like smoking, and a fatalism that says knowing you have cancer won’t save you.

SAM WILSON: My whole family, they just won’t go to the doctor anymore. My mother died of cancer and she wouldn’t go. Two of my sisters died with cancer. But they went to the doctor, but they still passed away.

JACKIE JUDD: Irene, did you try to convince him to go to the doctor when he wasn’t feeling well?

WOMAN: He finally told me after a few years, and he said, it’s so painful, something has to be done.

JACKIE JUDD: After a few years? Years?

WOMAN: Yes, he’s very lucky, yes.

JACKIE JUDD: Not months or weeks, years?

WOMAN: No. No. What, about four years maybe.

JACKIE JUDD: Kentucky public health officials are trying to change that storyline, to get people screened, so disease is discovered before it is too late to treat.

Tom Tucker is the director of the Kentucky Cancer Registry.

TOM TUCKER, Kentucky Cancer Registry: The old models for doing this, where we tell people that they need to do it, and they’re going to go do it, well, that’s obviously not going to work. So using other strategies that are culturally and socially appropriate for the population, that connect more appropriately, we are much more effective at doing that now than we were 10, 20, 30 years ago.

Has anybody ever talked to you about a colonoscopy?

JACKIE JUDD: About a decade ago, health officials trained their sights on colon cancer. And within seven years, screenings doubled and deaths declined 24 percent statewide. Part of the strategy is to reach people where they live.

TOM COLLINS, Rural Prevention Cancer Center: When’s the last time you seen a doctor?

MAN: Long time.

TOM COLLINS: Yes?

MAN: The only time I go is if a bone is sticking out or if I got to be sewed up.

JACKIE JUDD: Tom Collins with the Rural Prevention Cancer Center sets up shop in the county unemployment office, sweetening the deal with his homemade pies. About half of the people he corrals either leave with a home test-kit or agree to get colonoscopies.

TOM COLLINS: The challenge is educating them that they can do something about it, and that I can help them do something about it. You don’t have to get cancer.

JACKIE JUDD: The state legislature passed a law last year requiring insurance companies to cover colonoscopies.

But Debra Burchett had no insurance and no way to pay for a screening, even though she was having symptoms. Then, her doctor told her the county had begun offering free screenings for people in her situation. That probably saved her life.

And what was diagnosed?

WOMAN: Colon cancer, stage four.

JACKIE JUDD: So if you had not found the free program, would you not have gotten the colonoscopy?

WOMAN: Probably not. I probably wouldn’t be here today.

JACKIE JUDD: Another piece of this success story is Polly Gilbert and other lay health workers, who are known in the community and trusted.

Gilbert travels hundreds of miles a week, visiting people in their homes, educating them about preventive care and steering them to the proper services.

POLLY GILBERT, Kentucky Homeplace: Hi. What’s going on today?

JACKIE JUDD: So they will listen to you in ways that they may not listen to a doctor.

POLLY GILBERT: Sometimes they do, and we have been able to sway them: “Well, Polly says I need to come,” and not just because I’m such an influence, but I make them — they’re part of my family.

JACKIE JUDD: In the past couple of years, the increase in the number of people getting screened for colon cancer has plateaued. Even the trusted Gilbert runs into resistance, as she does with Sam Wilson’s wife, Irene.

You have never had a colonoscopy?

WOMAN: No, I haven’t.

JACKIE JUDD: Why?

WOMAN: Well, I guess because I haven’t had any symptoms or anything.

JACKIE JUDD: Public health officials are now tackling another disease that is devastating to the region. The incidence of lung cancer is Almost double here compared to the national average. Deaths are almost double. The challenge is to not only encourage certain lifelong smokers to get screened, but to get them to quit, and for others to never start.

It will be even more difficult than changing the profile of colon cancer, because smoking involves addiction.

JERRY BURCHETT: I have been smoking since I was probably 8 years old. Back in those days in this part of the country, it was nothing for kids to smoke. It was acceptable.

JACKIE JUDD: Longtime public health worker Becky Simpson hopes schools will begin using this anti-smoking program, even for kids as young as 10 or 11. Years ago, conversations like this never would have happened.

BECKY SIMPSON, Kentucky Cancer Program: I could not talk about it unless I had permission.

JACKIE JUDD: Why?

BECKY SIMPSON: Because we didn’t want to anger the people that we were working with. Tobacco was the cash crop. It was the way people made a living. And so it just was not OK to try and tell people don’t smoke, because that was how people made their living.

JACKIE JUDD: How many of the patients who you treat are typically from Eastern Kentucky?

DR. SUSANNE ARNOLD, Markey Cancer Center: We have about 50 to 70 percent.

JACKIE JUDD: Oncologist and researcher Susanne Arnold at the Markey Cancer Center in Lexington is investigating how to get screening numbers up in rural Kentucky, as well as looking at causes of lung cancer which may be unique to the region.

DR. SUSANNE ARNOLD: There’s got to be more to it than just a little bit more smoking in that community, that causes this gigantic increase in lung cancer rates. And the reasons for that are probably, we don’t clear carcinogens as well as the next group, we don’t process tobacco as well, so we have a higher drive for more nicotine and we smoke more.

We maybe don’t repair our DNA as well as other populations, and DNA damage is at the heart of cancer incidence.

JACKIE JUDD: Dr. Arnold sees progress battling cancer, but progress slowed by poverty and fiercely held custom.

Do you encounter what I would call that fatalism?

DR. SUSANNE ARNOLD: Yes, I do. And I’m struck by it, because it means that these people have been devastated, and they have been devastated over and over and over again, by not having anybody to reach out to help them. Ultimately, we don’t want people to lose hope.

JACKIE JUDD: The hope of public health officials is that the model used to bring down colon cancer deaths can be used to the same effect, not only for lung cancer, but for other diseases plaguing this depressed swathe of America.

As for Sam Wilson, he so wishes he had not ignored his health. He says, he’s been sick so long now, he almost forgets what it means to feel better.

For the “PBS NewsHour,” this is Jackie Judd in Campton, Kentucky.

SAM WILSON (singing): For letting me live just one more day.

Thank you.

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