NEWS

Special report: Cancer preys on rural Americans

Laura Ungar

MARIANNA, ARK. – In the home of the blues, amid dying towns, gravel back roads and endless Mississippi Delta farmland, cancer grows, spreads and kills mercilessly — even the types that can be caught or stopped with well-known screening tests.

Ruby Huffman, 73, got her first colonoscopy only after passing blood, and it found a huge cancerous tumor. Rita Stiles, 61, went at least a decade without a mammogram. And Tina Williams, 55, has had only one Pap smear in her life. Thousands of Ohioans discovered they had cancer after seeing a doctor thanks to the expansion of Medicaid.

The story is the same in many parts of America, USA TODAY found, and experts say there’s no excuse. Screenings that have been around for decades can detect breast, colorectal and cervical cancers at early stages, and even find colon polyps and cervical lesions before they turn into cancer. But their promise is limited — the nation’s progress against cancer diminished — because poor, minority and rural residents are left behind.

USA TODAY analyzed state-by-state data on screenings, incidence and death for these three cancers. The newspaper worked with the North American Association of Central Cancer Registries to compare states’ incidence-to-mortality ratio to see where deaths exceed what’s expected based on how often cancer strikes. States faring worst include Arkansas, Mississippi and Alabama, largely because cancers were found late, causing untold suffering and pushing up health costs for everyone.

Ohio ranked among the top 10 worst for all three cancer categories ranked — breast, colorectal and cervical.

“We really can alter survival from the disease with early detection,” said Andrew Salner, director of the Hartford HealthCare Cancer Institute in Connecticut, one of several New England states that fared well. “We can bring down mortality … if we can provide equal access to care.”

Getting preventive screenings and quality treatment is much tougher for people who struggle daily to get by. So cancer preys upon the poor. State-by-state rankings for poverty closely mirror those for cancer deaths.

About a quarter of Ohioans, nearly 3 million people, received Medicaid in fiscal year 2015, with 644,000 of them coming on through expansion. Of those added through expansion, 6 percent — nearly 40,000 — were newly diagnosed with cancer, said Sam Rossi, Ohio Department of Medicaid communications director.

“They were walking around with cancer that was undiagnosed and untreated ... That’s something I personally didn’t even think we would see with expansion,” Rossi said.

Rossi expects Ohio’s push to use managed care plans for Medicaid recipients will impact the state’s high cancer mortality-to-incidence rate. Currently, 80 percent of Medicaid clients are on managed care plans compared to 30 percent in 2006.

The reason, he said, is because managed care plans are focused on prevention, like annual checkups and cancer screenings, and the insurance providers send out reminders.

“We’re not able to do that (manage and send reminders) out of Columbus, which is why managed care is so important,” Rossi said.

Though the Affordable Care Act has brought coverage to millions, it hasn’t solved the myriad other problems impeding access to care, such as transportation difficulties, lack of education, inability to take time off from low-wage jobs for medical appointments, and shortages of doctors, hospitals and cancer-screening facilities. It hasn’t made all doctors “culturally competent” to effectively care for minority patients.

Though it eases financial barriers, “I don’t think the ACA is a panacea to make everything equal,” said Otis Brawley, chief medical officer for the American Cancer Society.

Government funding is no equalizer. States with the most cancer deaths often have less money to fight the disease, so their efforts reach only a few of the most vulnerable citizens. Rural hospitals dependent on government insurance struggle with low reimbursement that contributes to the demise of some.

Federal funding for cancer screening is in flux. A nationwide program that has provided more than 12 million mammograms and Pap tests for low-income women since 1991 lost $8 million in federal funds in the past five years. President Obama’s proposed budget for next year cuts $42 million from breast, cervical and colorectal cancer-screening programs on the assumption the ACA will improve access to screening. A bipartisan spending deal hasn’t determined specific allocations for particular programs, but previous House and Senate bills restored at least some of the money.

Ohio uses federal funding to run its Breast and Cervical Cancer Project, which provides screenings for uninsured women with an income of 200 percent or less than the federal poverty level. Between 1994 and 2012, the Ohio Department of Health reports 83,420 women across the state received screenings.

Positive screenings through the program would make women eligible for cancer treatments paid by Medicaid. According to Rossi, there typically were between 900 and 1,000 women each month receiving Medicaid through the cancer project program, but that has dropped to about 600 since expansion.

“The environment right now is very challenging,” said Amy Elizondo, a vice president at the National Rural Health Association. “The budget cuts in general, the hospital closures, the primary care shortages — all of that is sort of this perfect storm creating these disparities.”

STATE OF MISERY

Ruby Huffman curls on a couch in the small house she shares with her husband, Wayne, located off a miles-long gravel road running through flat acres of Arkansas maize. After being diagnosed with colon cancer in May, she’s had surgery to remove her tumor, a hysterectomy and several rounds of chemo.

When she was diagnosed, “the doctor asked if she ever had a colonoscopy, and she hadn’t. … She told me, ‘I don’t need one,’” said Wayne Huffman, a retired salvage yard worker. “If she would’ve got them when she was 50, (what was once a polyp) might not be cancerous.”

Statewide, slightly more than half of Arkansans 50 to 75 years old got a screening sigmoidoscopy or colonoscopy as recommended — compared with nearly three-quarters in the best-performing states, according to 2012 federal survey data in the American Cancer Society’s latest cancer prevention report. Less screening means more death. National Cancer Institute statistics analyzed by USA TODAY show Arkansas’ mortality rate of 17.6 per 100,000 was 20 percent higher than the national average, even though incidence was only 7 percent higher.

The trend is similar for cervical and breast cancers. Almost 40 percent of Arkansas women 40 and older got a mammogram and clinical breast exam in the past year, for example, compared with about 60 percent in the best-performing states. This contributes to a death rate 9 percent higher than the national average even though breast cancer strikes Arkansas women at a rate 11 percent lower than average.

Other Arkansas women are headed toward the same tragic path. Despite controversy on mammograms, women in their 50s need to be screened at least every two years, high-risk women earlier and more often. Stiles, the 61-year-old from the Delta region, recently got her first mammogram in about a decade on a mobile mammography van run by the University of Arkansas for Medical Sciences.

She “put it off and put it off,” she said, taking action only after her sister was diagnosed with breast cancer.

Earlean Lee, 64, also got her first mammogram in a decade on the van at the suggestion of a clinic doctor, a year-and-a-half after watching her husband die of kidney disease and colon cancer. Lee, who never finished high school, said she’s not sure why she waited so long between screenings, she just “forgot about it.” Lee lives in Hughes, a dying Delta town where tall grass surrounds rows of abandoned homes and a once-commercial street contains no open businesses.

Amid such desolation, the churches on nearly every corner are all that thrive.

WEB OF PROBLEMS

Preventing cancer is not a priority in such places, said Clifton Collier, CEO of the Lee County Cooperative Clinic in Marianna. “When you’re living in poverty, you have more immediate problems than seeing about getting a prostate screening or ‘Is it time for a colonoscopy?’” he said.

People might not know they should get a colonoscopy every 10 years starting at age 50 or have a Pap smear at least every three years as a young woman. “Health literacy” goes hand-in-hand with poverty and education levels. One in five Arkansans, and one in four in the Delta region, live in poverty, and only 14 percent of rural Arkansans have a college degree, less than half the national average.

Public health efforts often don’t reach the most vulnerable. Thomas Tucker, cancer registry director in Kentucky, echoes others: “The U.S. has the greatest cancer control program in the world — for the middle class.”

Doctor shortages only make things worse. Nearly a quarter of the U.S. population lives in rural areas, but only 10 percent of physicians practice there. A state report in Arkansas found one primary care doctor per 867 residents, much worse than the national average of one to 631. Not all doctors take Medicaid, lessening the impact of the state’s expansion of the program through a federal waiver. Cancer specialists are scarce in rural areas, and 26 of Arkansas’ 75 counties have no mammogram facilities, said radiologist Sharp Malak of UAMS, adding that such rural shortages are common nationally.

Bill Strickland of Center Ridge, Ark., said he was told he was fine after a colonoscopy at a hospital, which he got at age 46 after a colleague at the paper mill where he works developed colon cancer. A few years later, another colonoscopy detected potentially deadly Stage 3 colon cancer that required surgery and chemotherapy. “Looking back on it, maybe … these guys missed it the first time,” said Strickland, 56, who is African American and now gets his care at UAMS. “Now I tell people: Go to a place where they specialize in doing it, like an endoscopy center.”

Brawley said quality treatment is key to beating cancer, especially since every patient and every cancer is different. Research, including a landmark 2002 Institute of Medicine report called “Unequal Treatment,” shows that minorities, even those with incomes equal to whites, are likely to get lower-quality care. African Americans make up more than half the population in some Delta counties. Cancer kills them at rates much higher than whites.

“The Delta is very much the Deep South. There’s racial tensions,” said Holly Felix, an associate professor in health policy at UAMS. “Many of the patients say they’re treated poorer than their white counterparts. Providers may have inherent bias.”

Given all of the state’s socioeconomic challenges, Appathurai Balamurugan of the Arkansas Department of Health said he’s not surprised by its poor rankings on screenable cancers. He said he’s deeply concerned and cites efforts at improvement: the UAMS MammoVan, which travels to rural areas throughout the state, and an osteopathic medicine college under construction that might help relieve the state’s doctor shortages.

Still, he said, progress has been limited by resources. “We’re trying to do our best with what we have,” said Balamurugan, medical director of chronic disease prevention and control. “More can be done, no doubt at all. And more needs to be done.”