In this Friday, Nov. 4, 2016, photo, Justin Hathaway hugs his daughter Ella, who suffers from Goltz syndrome, a rare illness that requires frequent care from medical specialists, at their home in Tonopah, Nev. Tears well up in the eyes of Ella's mother, lifelong Tonopah resident Acacia Hathaway, as she talks about last year's closure of Nye Regional Medical Center, the only hospital within 100 miles of her home. (Rachel Aston/Las Vegas Review-Journal via AP)
LAS VEGAS — Tears well up in the eyes of lifelong Tonopah resident Acacia Hathaway as she talks about last year’s closure of Nye Regional Medical Center, the only hospital within 100 miles of her home.
“It was . like the end of the world here,” says the 24-year-old mother of three, including a daughter who suffers from Goltz syndrome, a rare illness that requires frequent care from medical specialists.
Now, instead of visiting the local hospital when 4-year-old Ella suffers one of her seemingly inevitable infections, Hathaway or her husband, Justin, drive to Las Vegas - three hours each way. That’s in addition to twice-monthly trips for regular appointments with her doctors — all eight of them.
The inconvenience and expense are challenging, but the young mom agonizes most about what would happen if Ella suffered a medical emergency, reported the Las Vegas Review-Journal.
“If that one thing happens and she does not wake up for some reason, then it’s on me because there’s no hospital,” she said.
The dearth of hospitals is just one of the issues threatening the well-being of the roughly 300,000 Nevadans who, like the Hathaways, live in small towns like Tonopah and other rural communities. A shortage of medical professionals, an increasingly strained emergency care network and escalating costs of health care are threatening to turn them into health-care “have-nots” who pay a steep price for their rural lifestyle.
Kamin VanGuilder, a 48-year-old primary care doctor in Lovelock, says it’s vital that the state support its rural health facilities and their patients, who are slowly becoming isolated from care.
“Some of the sickest people are the ones with the least resources,” she said.
The problem is not limited to Nevada. Across the nation, residents of rural areas are experiencing health-outcome disparities.
A PUBLIC HEALTH CHALLENGE
Rural residents are themselves a public health challenge, as they are generally older, more isolated and less likely to be covered by insurance than their urban counterparts. They’re also more likely to smoke, suffer from obesity and hypertension and die from complications of diabetes.
But preventive care that could head off medical emergencies is hard to come by in many areas. Nevada’s rural and “frontier” counties - a term used for the state’s most-remote and sparsely populated regions - and reservations face severe shortages not just of doctors and primary care services, but also nurses, EMTs, dentists and substance abuse and mental health professionals. And in some areas, the numbers are dwindling, despite efforts to reverse the trend.
When residents do get seriously ill, the lack of local emergency care can trigger a quickly escalating response that exponentially increases the cost of care, particularly when air ambulances or long hauls in emergency vehicles are involved. Sometimes patients need to be rushed across state lines to reach the nearest hospital, which requires transfer from one ambulance service to another when they reach the border. The bills for those life-or-death trips are often passed on to the government and taxpayers.
Federal and state officials are well aware of the problem and are working to address it, but they’re trying to lock onto a moving target.
Nevada’s 14 rural and frontier counties, which account for roughly 87 percent of its 110,567 square-mile territory, are home to just over 10 percent of the state’s population. Eleven of the counties are expected to add to their populations over the next decade, resulting in overall growth of 7 percent, according to 2015 data from Nevada’s State Office of Rural Health.
That means roughly 20,000 more residents could find themselves in a situation like Roger Hooper’s.
Hooper, a former processing operator for a mining company who lives nearly 60 miles from Tonopah in the Big Smoky Valley, suffered a work-related brain injury in 2003. Now he catches a rides in a van operated by the Tonopah senior center at least twice a year to meet with his neurologist and primary care physician in Reno - nearly 350 miles away.
Surrounded by friends recently at the senior center, the 51-year-old, who lives alone, says he’s lived in the area all his life and doesn’t plan to leave unless he’s forced to by his health. The lack of health care options is worrisome, especially as he gets older, he acknowledges.
“If you have any kind of emergency,” he says, “there’s no place to go.”
Hooper’s attitude is a common one in rural Nevada.
CARE GAP WIDENS
Despite efforts to narrow the care gap, it continues to widen. The number of medical doctors per capita declined by nearly 10 percent in Nevada’s rural and frontier areas between 2004 and 2014, even as it was growing 15 percent overall in the state. And that in a state with an overall shortage of health-care providers.
“Those problems are aggravated in rural areas that have always struggled to recruit and retain or keep those types of professionals in their facilities and their communities,” says John Packham, director of health policy research in the state’s rural health office.
The loss of even one or two rural health-care providers can throw off the balance in an entire rural county, he added.
The state and medical schools have ramped up efforts to recruit new graduates to practice in rural areas, but with limited success. Doctors, nurses and other medical professionals are often reluctant to do business in a small town, fearing limited opportunities for socialization and profit, said Jessica Thompson, director of group practice operations at the Renown Health telemedicine clinic that opened in June in Tonopah.
Organizations like the Southern Nevada Health District are among those trying to boost physician and nursing recruitment in outlying areas.
Insurance companies and nonprofits are also creating mobile health clinics like mammogram vans that can travel the state to provide care.
Despite such efforts, the shortage of medical professionals is so serious in the Esmeralda County town of Goldfield that 32-year-old Danie Johnson and her 55-year-old mom, DeEtta Sligar, run a volunteer ambulance service for the town’s roughly 300 residents.
With no medical clinic in town and the nearest hospital more than 110 miles away in Bishop, California, Johnson, Sligar, two other EMTs and four drivers spend hours at a time ferrying ill residents across the border. They receive $132,058 a year from the county to keep their ambulance and an old backup running.
Since last year’s closure of the Tonopah hospital, which was 27 miles away, average transport times have gone from about one or two hours to roughly five to seven hours.
Johnson says she doesn’t mind the extra hours she spends driving across the desert, but is uncertain what would happen if the town faced a major emergency.
“It’s something you don’t want to think about,” she says.
The financial struggles of rural hospitals like Tonopah’s have proven hard to remedy.
From January 2010 to September 2016, 78 rural hospitals in the U.S. were closed, according to researchers at the University of North Carolina at Chapel Hill.
The economic recession of 2008, population trends and decreases in the demand for inpatient services all have contributed to the struggles of rural facilities, they concluded.
SPECIAL CHALLENGES
Packham of Nevada’s rural health office says health-care facilities in less-populated areas also face challenges that their urban counterparts don’t have to deal with, including recruitment, technology gaps and difficulties providing training for staff.
Closures spurred U.S. Rep. Cresent Hardy, R-Nev., and others to introduce legislation in April to incentivize the creation of new hospitals in rural areas and require the federal government to report on the status of rural health systems, which it hasn’t done in over a decade. The bill has been referred to a House subcommittee.
With the economics of running a rural hospital unlikely to change soon, many health-care experts are pinning their hopes of delivering quality care to rural patients on telemedicine services that can connect them to doctors and nurses in urban areas.
But that creates new issues, as rural clinics must find ways to fund telemedicine systems and often lack ready access to the technical expertise necessary to keep online or video conferencing equipment up and running.
‘YOU CAN WORK WITH A DOCTOR’
And some rural patients aren’t too keen on the idea of consulting with a doctor from afar.
“You can work with a doctor,” said 69-year-old Kristin Hougard, who suffers from partial paralysis and fondly recalls collaborating with a doctor at the Tonopah hospital to manage her pain and set a course for treatment. “You can’t work with a doctor on a TV screen.”
Like many of the desert-loving residents in Goldfield, Hougard said she’s considered moving but isn’t willing to trade her trailer on a small plot of land decorated with desert souvenirs for improved access to health care.
“This is security,” she said, gesturing around her trailer. “This is mine. They can’t kick me off it. They can’t make me move.”
But other rural residents like the Hathaways say the price of health in a small town like Tonopah has gotten too steep, particularly for a family with a chronically ill daughter.
When Ella developed a painful abscess in her tooth on Memorial Day, for instance, her parents rushed her to Las Vegas because there were no dentists available nearby.
Emergencies like that hit the family budget two ways, said Acacia Hathaway.
“My husband had to take off work to run my daughter to Vegas and beg the doctor (to see her),” she said.
With finances already stretched by her daughter’s health-care needs, Hathaway says she and her husband are ready to break the cycle - if only they could.
“If I had the money,” she says grimly, “I would leave.”