Post-Gazette Special Report:
Bob Burkey and his wife Paulette have lived in the house they built in Westmoreland County for almost 50 years.
Now, Mr. Burkey worries about paying for his diabetes medicine.
The monthly copay for his prescription has forced him and Paulette to choose between groceries and medicine.
Challenges like these are causing people in rural areas to die earlier and at higher rates from common diseases than urban dwellers.

And the divide is growing.
The rising cost of Western Pennsylvania’s rural penalty
April 26, 2024

Nearly 50 years ago, Bob Burkey and his wife Paulette would work all day, come home to their single-wide trailer for supper, then spend evenings clearing trees with chainsaws in a Westmoreland County glen where they would eventually build their new home.

These days, Mr. Burkey, now 78, walks gingerly with a cane around the modest home they built and worries about paying for the diabetes medicine prescribed by his family doctor. The medicine has worked well, melting off the pounds and greatly reducing his blood sugar.

But the monthly copay for his Ozempic prescription was $240, forcing him and Paulette, 74, who live on $3,500 a month in pension and Social Security benefits, to choose between groceries and medicine after exceeding a Medicare threshold in the first few months of the year.

“I told the doctor to put me on something cheaper because there was no way we could afford it,” said Mr. Burkey, a retired systems analyst for the county. “It’s just the anxiety of it all — and it feeds into depression.”

Bob Burkey listens intently as Dr. Paul Means explains his Ozempic medication. (Lucy Schaly/Post-Gazette)

In the meantime, in a strip mall 20 minutes away in Scottdale, a nurse’s aide at the doctor’s office of Paul Means was intent on getting Mr. Burkey into a drug manufacturer’s discount program for Ozempic, a wildly popular diabetes medication that retails for about $900 a month. Other drugs he’d tried stopped working.

“I will get it for you somehow,” Mr. Burkey remembers WVU Medicine nurse’s aide Christine Hackney promising. “If I have to be here 24 hours, I will get it for you.”

Bob Burkey gets his blood drawn at the Tri-City Medical Center in Scottdale. (Lucy Schaly/Post-Gazette)

Westmoreland County isn’t technically a rural county because it’s part of the larger seven-county Pittsburgh metropolitan area. But the sparsely populated corner of East Huntingdon Township where the couple lives shares many of the health worries with rural America, including difficulty getting and paying for the latest prescription drugs. 

Those are among the reasons people living in rural areas die earlier and at higher rates of common diseases than those in urban centers after adjusting for age and other factors, new research suggests. And the rift between rural and urban health has been growing.

“It’s a big and growing disparity in the U.S.,” said Arthur G. Cosby, professor of sociology at the University of Mississippi, who has spent much of his career studying the issue. “It just keeps growing. Our rate of innovation way exceeds our ability to equitably distribute it in society.”

The rural penalty
A view of rural Westmoreland County near unincorporated Ruffs Dale. (Lucy Schaly/Post-Gazette)

Adjusting for age and other factors, life in rural U.S. often means lives cut short by heart disease, cancer, unintentional injuries, lung problems and stroke at higher rates than in urban areas. Rural residents have not benefited from the advances in health and longevity that city dwellers have, research has found.

The size of what researchers call the rural mortality penalty is huge:

— In 2004, rural counties experienced more than 35,000 additional deaths each year when compared to urban counties, according to research conducted by Mr. Cosby and others that appeared in the American Journal of Public Health.

— By 2016, the number of excess deaths, above the number of deaths expected under normal conditions, ballooned to about 61,000 annually.

In many rural areas, health systems have been shuttering primary care offices, closing maternity units, ending joint replacement surgery and discontinuing chemotherapy, which has reduced some rural hospitals to little more than urgent care outposts. At a time when pharmacists lose over $100 filling brand name prescriptions like Ozempic, the sting pinches most in rural Western Pennsylvania drugstores, where mounting losses have pushed more than a dozen pharmacies out of business in recent months.

Congressional reforms that would increase drugstore margins have mostly stalled and even nonprofit hospitals operate according to free market norms. Few controls govern the medical services they provide. 

It doesn’t help that even as efforts expand to improve access to doctors and medical care via telemedicine, internet service in many rural areas is unreliable. Soon, more than 23 million low-income residents in the U.S. — including 745,124 Pennsylvanians, many of whom live in small towns — will no longer receive a monthly subsidy from the Federal Communications Commission that makes access to the internet and online medical records possible. Effective May 1, funding for the FCC’s $30-a-month subsidy for low-income people — a 2-year-old program that was part of the federal government’s Internet for All initiative — runs out.

The Berwick Hospital Center closed to all but mental health patients last year in Columbia County. (Sebastian Foltz/Post-Gazette)

“People who are already left behind will get even more left behind,” said Karen Lightman, executive director of Metro21: Smart Cities Institute at Carnegie Mellon University, who has studied the issue.

“That’s what happening: all this great stuff about connected homes and telehealth will be for rich people who live in rich communities.”

Only 40% of Dr. Mean’s patients — many living in the coal patches of Fayette and Westmoreland counties — access their health records online; just 20% look at the physician’s medical notes, he said, sometimes because of the high cost of an internet connection, where it’s available at all. Most of his patients are eligible for Medicare and many are low-income, too proud to admit they are having money problems, he added.

There are no endocrinologists practicing in rural Fayette County, where the incidence of diabetes is among the highest in Pennsylvania. That’s care that is standard for treating the disease in urban areas, including Pittsburgh, 56 miles away.

Many of Dr. Means’ patients choose zero premium Medicare Advantage health coverage for the affordability, but the plans’ co-pays for things like physical therapy along with tight household budgets forces some patients to work into their 80s and 90s, he said.

“These are hardworking people,” he said. “They just can’t afford not to work.”

Because so many of their patients are low income, Dr. Means’ staff struggles every day to connect them to medicines they can afford. Differences in the medications available to people living in rural areas — rather than the treatment or doctors’ education and training — is a key to understanding why patients living in cities do better overall, he said.

“We all read the same medical journals, go to the same conferences,” said Dr. Means, who is 54 years old. “We’re all board certified.

“But what good does it do for my patients to prescribe a drug that they can only fill for two months of the year?”

People left behind?
The Burkeys built their house in Ruffs Dale, Westmoreland County, 50 years ago. (Lucy Schaly/Post-Gazette)

Until around 1940, rural America offered an escape from overcrowded cities, many of which were plagued by polluted water, poor sewage and garbage disposal, and contagious diseases. The water was fresher in the country, the air was cleaner.

But the dynamic has reversed since the 1980s: emerging research shows that living in rural areas has become a liability to health instead of a benefit. The result, which has an outsized impact on politics and other social issues, has been a growing class of people in the U.S. who are more likely to be older and unemployed and embittered about being left behind.

Mr. Burkey, a Navy veteran of the Vietnam war, grumbles about deep-pocketed celebrities sweeping up supplies of Ozempic for weight loss, while he struggles to pay for the drug to control his diabetes. He shakes his head over illegal immigrants pouring into the U.S. from the southern border where they are provided food and shelter, while American seniors can’t keep up with the rising cost of living.

Rural demographics tell the story of the rural health penalty.

Research has long shown the people living in rural areas skew older, less healthy and less affluent, and that’s certainly true in southwest Pennsylvania.

Fayette County consistently leads the seven-county Pittsburgh metropolitan area in high unemployment rates, while the median household income and life expectancy in Fayette and Westmoreland counties trails statewide averages, according to the University of Wisconsin Population Health Institute. The over-65 population in the two counties exceeds the statewide average while median household income in the two-county area is lower than Pennsylvania overall.

But the reasons for the rural health disparities go beyond demographics.

A look at 47 years of U.S. rural and urban mortality trends at the county level, 1970 to 2016, controlling for the effects of education, income, poverty and race, found that people living in rural areas had not benefited from medical advancements in heart disease, cancer, lung problems and stroke that city dwellers had. The chasm has been growing: between 2004 and 2016, the rural penalty death rate increased 75% to 134.70 excess deaths from 72.97 excess deaths, both per 100,000 population, according to Mr. Cosby’s research published in 2018 and 2019.

Cancer survival rates are another example.

A turning point in cancer care for Americans came in 1991 when rates of the disease began falling after years of escalation. Adjusted for patient age, the cancer mortality rates for lung, breast, prostate, and colon cancers fell 32% through 2019, said Mr. Cosby, who included some 3,000 U.S. counties in the analysis that is awaiting publication.

Not so in rural counties.

Nurse's aide Christine Hackney, who works in this Scottdale office, promised to get Mr. Burkey into a discount program for his diabetes medication. (Lucy Schaly/Post-Gazette)

“Even though cancer rates were going down for most places, there were a large number of rural areas that had very small or no improvement in cancer mortality,” he said. “Rural areas are not participating in that big drop in cancer improvement.”

Overall, the mortality rate for rural, low-income Americans was about 20 years behind the rates for people living in urban areas, he found.

A new generation of GLP-1 receptor agonists, a class of drugs that includes Ozempic, is revolutionizing diabetes care, Dr. Means said, offering far more effective treatments. In addition to sugar control, the drugs have a protective effect on the heart and kidneys and have helped obese patients lose weight.

“It’s got everything we never had,” Dr. Means said. “It hits everything.”

The issue is fairness
Bob Burkey watches TV at home. (Lucy Schaly/Post-Gazette)

Mr. Burkey pressed a button on a remote controller and the living room easy chair where he’s been sitting eases him upright as he and Paulette get ready to leave for a routine checkup with Dr. Means.

To his relief, he said, Danish drugmaker Novo Nordisk a few days earlier had approved his participation in the program that will provide free weekly injections of Ozempic.

Mr. Burkey estimates that his wife spent at least 100 hours on the phone, submitting information then submitting it again to get approval. At one point, she was on hold for two hours before the call disconnected.

“I gave up,” Ms. Burkey said. “I said I’m not doing this. Why does it have to be so hard?”

Twenty minutes later, the couple pulled into the parking lot at Dr. Means’ office in their red compact Chevy. Inside, patients were lined up at the receptionist window.

Mr. Burkey tries to get out of his chair at home. (Lucy Schaly/Post-Gazette)

Dr. Means and Mr. Burkey are like old friends, with Mr. Burkey calling the doctor “Paul” because he has known him since he was a child growing up in Connellsville.

Christine Hackney, the nurse’s aide in the office, said she, too, was relieved that Mr. Burkey was accepted into the discount drug program.

Bob Burkey and wife Paulette get ready to leave for an appointment with Dr. Paul Means. (Lucy Schaly/Post-Gazette)

She spent lunch hours over a period of two months on the phone with Novo Nordisk representatives and automated attendants, and faxing information to the drugmaker on behalf of Mr. Burkey — something that Dr. Means said she does for many patients of limited means who need to fill prescriptions they can’t afford. The office receives no compensation for the additional work.

The issue is simple fairness, Ms. Hackney said.

“He worked all his life and he can’t get his medicine,” she said of Mr. Burkey. “And I just don’t think that’s right.”

Kris B. Mamula: kmamula@post-gazette.com 



Kris B. Mamula

Videography / Photography

Lucy Schaly


James Hilston

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Laura Malt Schneiderman