Found too late: Cancer preys on rural Americans

MARIANNA, Ark. — In the home of the blues, amid dying towns, gravel backroads 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.

Here, 73-year-old Ruby Huffman got her first colonoscopy only after passing blood, and it found a huge cancerous tumor. Sixty-one-year-old Rita Stiles went at least a decade without a mammogram. And 55-year-old Tina Williams has had only one Pap smear in her life.

The story is the same in many parts of America, USA TODAY has 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.

“We really can alter survival from the disease with early detection,” says 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.”

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

While the Affordable Care Act has brought insurance 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,” says Otis Brawley, chief medical officer for the American Cancer Society.

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

Meanwhile, 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 last five years. And 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 yet determined specific allocations for particular programs, but previous House and Senate bills restored at least some of the money.

“The environment right now is very challenging,” says 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.”

And these disparities can be as deadly as cancer cells.

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. She travels 1.5 hours each way every two weeks for treatment in neighboring Mississippi.

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,’ ” says 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 between 50 and 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% higher than the national average, even though incidence was only 7% higher.

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

Kathy Hall, 47, of Little Rock, wishes she’d had a mammogram when she should have. She was at risk for breast cancer after surviving Hodgkin’s disease as a teenager, and doctors advised her to get annual mammograms starting at age 30. But after having one at 32, she didn’t have another. She never thought cancer would strike. She was a busy single mom fresh out of law school with no health insurance. Then one morning when she was 38, she felt a knot the size of a small pine cone while adjusting her bra. It turned out to be Stage 3 breast cancer.

Hall had chemotherapy, a double mastectomy and breast reconstruction, and the cancer went into remission for almost a year, only to return in 2009 and spread to her liver, pelvis, groin and bones. A recent brain scan showed two lesions on her brain, and she knows it will take her life one day. But she hopes for as much time as possible with her 10-year-old son, Christian Fulmer. She treasures even the routine moments, like helping him make his favorite after-school snack of Nutella on toast.

“I’ve made peace with everything. I know what’s going to happen to me when I die,” she says. “My mission is to get that little one raised as much as I can.”

Other Arkansas women are headed toward the same tragic path. Despite current controversy on mammograms, everyone agrees that women in their 50s need to be screened at least every two years, high-risk women earlier and more often. But 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 says, 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, says she’s not sure why she waited so long between screenings, she just “forgot about it,” which is not unusual in poor, rural areas like hers. Lee lives in Hughes, a dying Delta town where tall grass surrounds rows of abandoned, dilapidated homes; a once-commercial street contains no open businesses and the schools are empty of children since the entire system closed last year.

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

Preventing cancer is not a priority in such places, says Clifton Collier, CEO of the Lee County Cooperative Clinic in nearby 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 says. “You’re trying to make sure food is on the table. You’re trying to make sure the lights are on.  So we neglect our health a lot of times.”

People also may 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% of rural Arkansans have a college degree, less than half the national average. The picture is similar in many rural areas and impoverished urban neighborhoods.

But public health efforts often don’t reach these vulnerable Americans. Thomas Tucker, cancer registry director in Kentucky, echoes other experts: “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% 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. And 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, says radiologist Sharp Malak of UAMS, adding that such rural shortages are common nationally.

Even having a facility doesn’t guarantee effective screening. “The quality of mammography is going to vary by socioeconomic status,” says the cancer society’s Brawley. “College-educated people get better quality mammography, better quality screening in general … (Poor people and minorities) are more likely to go to hospitals that are overcrowded and overburdened,” or get care from inferior doctors.

Bill Strickland of Center Ridge, Ark., says he was told he was fine after a colonoscopy at a local hospital, which he got at age 46 after a colleague at the paper mill where he works developed colon cancer. But just 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,” says 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 says quality treatment is also 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, many descendants of slaves and sharecroppers. Cancer kills them at rates much higher than whites.

“The Delta is very much the Deep South. There’s racial tensions,” says 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 says he’s not surprised by its poor rankings on screenable cancers. But he says he’s deeply concerned, and cites efforts at improvement: the UAMS MammoVan, which travels to rural areas throughout the state; a recent “Colorectal Cancer Roundtable” to develop a plan to fight this cancer, and an osteopathic medicine college under construction that may someday help relieve the state’s doctor shortages.

Still, he says progress has been limited by resources, which include about $9 million a year from the federal and state governments for cancer prevention, screening, diagnosis and treatment. “We’re trying to do our best with what we have,” says Balamurugan, medical director of chronic disease prevention and control. “More can be done, no doubt at all. And more needs to be done.”

Wealthier states tend to be much further ahead in cancer screening and treatment — and survival.

“Every state and locality has different resources available … Rural and frontier states have always been a challenge,” says Lisa Richardson, director of the division of cancer prevention and control in the U.S. Centers for Disease Control and Prevention, which helps fund state cancer control programs. “States that look better tend to have a better health insurance system, a health care system that functions better, and more coordination.”

Connecticut is among this group, as are Vermont, Hawaii and Rhode Island.

Along with the third-lowest poverty rate in the United States, Connecticut has some of the highest rates of screening for breast, cervical and colorectal cancer. Its incidence-to-mortality ratio for all three of these cancers ranks among the best in the nation. Even in breast cancer, where its incidence rate is sixth-highest in the nation, it fares well on mortality, ranking 39th among states – which doctors attribute to finding cancers early and treating them effectively.

Mary Witek’s cancer was found at Stage 1. The 50-year-old disability case manager from Rocky Hill had a routine mammogram on a Hartford Hospital mobile van in January 2013, then underwent a lumpectomy and eight weeks of radiation.

“I was lucky I didn’t need chemotherapy,” she says. “I have been blessed. I have not had any complications whatsoever.”

Witek says women in Connecticut are bombarded by messages about early detection on billboards and television and in newspapers. Susan Tannenbaum, an associate professor of medicine at University of Connecticut Health, says “we’re a very proactive state” in raising awareness about screenings, and they follow through with innovative efforts such as a UConn program offering breast cancer education and free mammograms to underserved women who come to them for dental care.

Doctors in Connecticut say the state’s small size and dense population help, since people don’t have to travel far for screening or cancer care. And compared with most other states, doctors are plentiful and insurance coverage is high. Only 5% of Connecticut adults lacked insurance as of mid-year, a Gallup-Healthways Well-Being index found, compared with 9.1% of those in Arkansas. Connecticut has also expanded Medicaid under the ACA.

But Salner says states without the advantages of wealth or small size can also make strides against cancer by truly understanding their unique problems, coming up with creative solutions and mustering political will.

In Kentucky, for example, a local gastroenterologist with a passion for preventing colon cancer started the nationally renowned Colon Cancer Prevention Project, which raised money and awareness of the disease and pushed for programs such as free screening for low-income, uninsured residents. Since the group started 11 years ago, the screening rate has more than doubled to 69.6% — and deaths are down more than 25%.

“A small group of people who are committed to work on disparity issues can really get it done,” Salner says. “If you look at the data, you can actually mount a cancer control program that makes a difference for people.”

If disparities are allowed to fester, however, experts say America’s groundbreaking research, technological advances and new treatments will only go so far toward defeating cancer.