Tune in for this Alabama Public Radio News Documentary tomorrow night at 7 pm...
"I hurt so bad, and I just stayed in bed like, for years I stayed in bed. I couldn't get out of bed. I couldn't wait on myself."
We're sitting at the dining table with Fay. She asked us not to use her real name. During our visit, one of her favorite songs plays in the background on an old portable CD player. Fay is seventy two and following her first ever mammogram in the year 2000, she found she had breast cancer.
"And then they told me I had the worst kind," says Faye. "And, I said 'cancer? What is the worst kind? It's bad no matter you look at it."
It didn't stop there.
"It masticized to my spine," she says. "My back kept hurting and kept hurting, and I kept running to the doctor."
For Fay, running to the doctor takes explaining. That's because of where she lives in rural Alabama. The nearest cancer specialist is in Tuscaloosa. That's an hour and a half away by car and Fay didn't have one. She scraped together six hundred dollars for a used truck. Her latest checkup meant hitting the road at 2 a.m. She says that meant fewer stop lights.
"You know the truck made it all the way down there, without me having to stop," says Faye. "It was making all kinds of weird noises, like the transmission was gone. It wouldn't change gears, it wouldn't do nothing. It would only creep along."
And a study from the Alabama Department of Heath says Fay may be one of the lucky ones. The report shows sixteen percent of rural residents in Alabama have no transportation at all. And, Fay's not the only one feeling the pressure of finding health care...
"People are doing without the health care that they need, because there are not facilities, and people don't have the money," says Julia.
Like Fay, Julia doesn't want us to use her real name. Fifty four of Alabama's sixty seven counties are considered rural. That includes Julia's home town, which looks like a slice of middle America. Rural health advocates say seven of these counties have no hospital at all. That includes Coosa County which doesn't even have a doctor. In these communities, unemployment is often high and poverty is often common. Julia says rural health care is a constant worry...
"I have three kids who wear glasses, three kids who...three kids total—but, you've got to dental appointments every year, eye appointments every year. And, then when they're sick."
Then, there are the shortcuts to get health care... At one point, Julia's family raised cattle. They don't do that anymore. But when they did, they worked with a local veterinarian. Julia says if her husband needed medical help, and he didn't want to wait in line or face co-pays...well, you know where this is going...
"Living in rural area, and working on farms...most men are not going to take off and go to the doctor, or there's not enough time. And so...you know...it just happens." Julia admits it's not always a matter of convenience, and the choice of people seeing their vet instead of their doctor often comes down to money. "I know of local people who've ran up and got an x-ray at the vet clinic, to see if it really broke or not. Because they don't want the expense of hospital...what they've got to pay to go there."
National health advocates say Alabama is ground zero for everything that's wrong with rural health care. Studies rank Alabama worst in the nation for infant mortality. The state also has the most diabetics. In 2016, the city of Gadsden, east of Birmingham, had the lowest life expectancy in the United States. Despite all this, rural health advocates complain hospitals in Alabama get the lowest reimbursement national frm Medicare.That's why eighty percent of hospitals in the state are losing money.
"I think people in the United States of America just don't realize that places like Perry County, Alabama still exist."
Perry is one of of seven counties in Alabama that has no hospital at all. And, if you want someone who's happy with rural health care in Alabama, don't ask Kendal Gilchrest...
"We've actually lived in a third world country for a period of our lives. And there were more resources, and more networks of support for us as a family in that third world country, then there has been here."
In case you were wondering which third world country... "The Dominican Republic," she says.
Kendal, her husband Eric, and their young three children live in the town of Marion. The Gilchrests work at Judson College. On the subject of dealing with rural health care, Eric has an example from just last week...
"My son falls out of bed, middle of the night, it's two o'clock in the morning, and he wakes me up and he has blood rushing down his face, he had gashed his, the corner of his eye open, and there's blood all over his face," he recalls.
Between them, the Gilchrest's have four masters degrees and a PHd. But, even that didn't help them get around the fact that Perry County doesn't have a hospital. The Alabama Rural Health Association says residents in six other Alabama counties could be asking questions like this one...
"It's two o'clock in rural Alabama, what do you do?"
Just one county to the north, things seem less tense. Joseph Marchant's big concern is making sure two boys don't fall off a four foot tall stone wall outside the Bibb Medical Center. Marchant is the CEO. This rural hospital in the town of Centerville in Bibb County is just twenty five miles north of Marion where the Gilchrests live, but it feels like world away... Along with the Hospital, Bibb Medical Center has a dental clinic and a nursing home. Marchant says finances are tight, but it works...
"I think our system here is a little different," says Marchant. "It's because again we're a little more unique than some because of the diversification that we have on our campus."
And Marchant says his hospital isn't among the eighty percent in Alabama operating in the red. Eric and Kendall Gilchrest in Perry County prefer the medical specialists they can get in Birmingham, even though that means a three hour round trip. Bibb Medical Center has thirty five hospital beds. Alabama will only certify hospitals with a minimum of fifteen and Perry County where the Gilchrests live doesn't even have that.
"Unfortunately, they have to have fifteen in Alabama," says Dale Quinney. He's executive director of the Alabama Rural Health Association. He's looking for something in between the feast in Bibb County and the famine in Perry...
"There are some communities that perhaps can afford a hospital, financially, their patients will make it profitable, that don't need fifteen beds."
That begs the question—how low can you go when it comes to the number of beds in a hospital?
"We had three," says Debbie Berry. She's the director of operations at the Greene County Hospital in Leakesville, Mississippi. And, you heard right, she said three...
"But, when you have three beds, you wonder how are you going to make it?" asks Berry.
Dale Quinney says Leakesville does... "This hospital, fifty four employees, three beds, and as we speak it's expanding to seven beds, is operating at a profit. So, it can be done in the right location."
So, we hit the road to have a look. Leakesville is a three hour drive southwest of Tuscaloosa, or an hour northwest if you're coming from Mobile. Once on the campus of Greene County Hospital, we head through a sliding glass door, and up to the reception desk.. That's where we met Debbie Berry An automated lab unit processes blood samples from Greene County patient load. Berry says there's a lot of samples to handle...
"It went from them seeing one or two a day, when we came here—we're seeing three hundred and fifty now, a month," says Berry. "So, our numbers have just climbed tremendously, but we're offering so much more now than we did."
What makes it all work?
Joseph Marchant talked about the secret sauce at his hospital. The sauce at Debbie Berry's is what patients see when they walk in the door...
"We're the first hospital in the state to have only nurse practitioners in their hospital," says Berry. "We don't have any doctors in our facility."
And it's that formula of fewer beds and no doctors that's the rub for regulators in Alabama.
"I think it's a bit too simplistic," says Dr. Tom Geary with the Alabama Department of Public Health. He handles regulatory affairs, so he's familiar with how the business model of Leakesville's hospital will be received in Alabama.
"It's more complex on top of something that's already complicated," says Geary. The fifteen bed minimum for rural hospitals in Alabama is due to state red tape. It means these facilities can expand if they need to, without a state re-licensing process that can take years... "And so, this is a compromise situation of making a difficult situation at least feasible for smaller hospitals to get at least fifteen beds functioning," says Geary.
All of this takes us back to the town of Marion, and Judson College which is one of the big employers in Perry County. The voices of its college choir are one of the few signs of hope in a situation that seems to otherwise bleak.
"It's hard for us to support each other, because we're kind of just surviving," says Kendall Gilchrest. The irony for her and her family is that even if the State of Alabama relented and allowed a smaller hospital for Perry County, there's no guarantee that hospital would include everything patients need. For example, Kendal has three children. She recalls the pregnancy that would have made it four...
"Early on, I got sick. And, I thought it was just a stomach bug. I'm playing phone tag with this practice that I barely know ninety miles away, talking to on-call physicians, trying to weigh is it worth driving a hundred and eighty miles round trip just be told that I have a stomach bug. I end up choosing not to go in because I have two other children at home. Then, about five weeks later when I go to my monthly appointment, I find the baby had died."
"Labor's not fun anyway, but being jolted around in an ambulance on a rural roads is worse. It is painful," says Ashley King.
If there's anyone who can sympathize with Kendall Gilchrest, it's King. She's had her own problems with rural healthcare during childbirth. King lives in Hale County southwest of Birmingham. And, how many hours in an ambulance are we talking about...
"It was two and a half...to three," she recalls.
More on King's story in a moment. A four month old is getting a checkup at University of Medical Center in Tuscaloosa. This hospital in west central Alabama attracts pregnant women from rural counties up to ninety miles away. That's roughly twenty four counties. "
Well, the average patient either does not have a job, or works in a fast food restaurant, a gas station," says Dr. Catherine Skinner. She directs the Obstetrical Unit at the center. She says many of her patients from rural Alabama tell a similar story when the baby comes... "They will need transportation, so they'll have to get their friend to drive them. That friend will probably miss work the next day so they lose that income. They need gas money to get here. And, child care if they have other children."
That one out of every five pregnancies Dr. Skinner sees every day. The reason University Medical Center is so popular with rural families comes down to the numbers, Alabama has fifty four rural counties. Seven of these counties have no hospital at all. Of those that are left, only a fraction delivery babies...
"Today, only sixteen," says Dale Quinney. We met earlier. Quinney is executive director of the Alabama Rural Health Association. Quinney says it often boils down to the cost... "You have to have the specially trained staff, and of course your specially trained family medicine physicians, or OBGYNS. You have to have the labs, the incubators, special equipment. Those cost money. And you have to have that whether you have ten births or a thousand."
And, the financial burden isn't just because of staff and equipment...
"With obstetrics, there are huge liabilities as well." We met James Marchant earlier too. He's CEO of Bibb Medical Center in the rural town of Centerville south of Birmingham. Marchant's hospital stopped delivering babies in the year 2000. "There's a lot of risk. And when you have risk that certainly means there could be substantial costs or problems if you have a bad outcome."
And, Ashley King's case appears to fall into that category. She first became pregnant when she was just sixteen years old. Then, roughly twelve weeks before she was due...this happened
"I started having chest pains, labor pains, migraines, I was blacking out...driving down the road in Dallas County," says King. Dallas County is about an hour east of where King lives. Just heading home wasn't an option because Hale County only has a small clinic...
"They can do stitches, and broken bones. Other than that, everything else goes to Tuscaloosa or Birmingham," says King.
King and her baby needed specialized care at UAB Hospital in Birmingham. That's two hours away. "I remember bits and pieces of the ambulance ride and the very...I remember first getting in the ambulance and how bad it hurt to be jolted around in full blown labor. It's not fun."
And King isn't alone. Women in Bibb County faced similar challenges finding obstetrical help when Bibb Medical Center stopped delivering babies in the year 2000 James Marchant was in grade school when that decision was made. When he took the job of CEO at Bibb, he felt something was missing...
"We had people who were delivered here in the 1960's and 70's and will come back and say how the campus has changed," says Marchant.
Two years ago that led Marchant to pose a question to the hospital's board and its staff members... "What would re-opening obstetrics mean to the other parts of the system?"
In 2015, after juggling the budget at Bibb Medical Center, they did...
The newly opened maternity unit has one recovery room and a small waiting room. Bibb celebrated its one hundredth birth since deliveries started again in 2015, and financially it's breaking even. But, all may not be well. How the system works that could be its greatest weakness. Marchant says the doctors that handle births at hospital don't technically work for him...
"The group that's covering the labor and delivery that isn't employed by the hospital. They actually operate a medical practice here in Centreville," he says. "And they're an independent that work out of a federal qualified health center."
That federally qualified health center is paid for by a grant through the Affordable Care Act, or Obamacare. And, all the talk in Congress about repealing and replacing the Affordable Care Act has Marchant wondering how long the unit can stay open...
"We look at what's working, we look at what's not working. We try to effect the things that don't work positively, and we try to enhance the things that do work. It seems, in Congress that's not the way they do things."
Back at University Medical Center, a rural mother to be is getting a check-up after driving forty five minutes. Or more specifically, her grandfather drove her and her husband to the appointment. If Bibb County loses federal funding, and its labor and deliver unit closes, it could mean more than just extra work for the doctors in Tuscaloosa.
"We know that when labor and delivery units close, the infant mortality rate in that county rises," says Dr. Catherine Skinner. For her, that could lead to more examples of what she calls her nightmare patient scenario. "She knew she was having contractions. She knew it was time. And, she arrived too late to be able to stop labor and the baby was born prematurely."
And, studies indicate Alabama already has one of the highest infant mortality rates in the nation.
Problems with rural health care in Alabama sound recent, but they're not. In fact, 2017 marked forty five years since an Associated Press story broke on how the public health system worked against rural Alabamians based on their race. APR's Stan Ingold explains how this year also marked the twentieth anniversary of the White House apology for the scandal.
"You remember the Rodney King affair right? Police beat the **** out of the guy. The Tuskegee story is the Rodney King story of medicine."
Meet Peter Buxton.
He's known as the whistleblower on The Tuskegee Study of Untreated Syphilis on the Negro Male. In popular culture, it's also called the "Tuskegee Syphilis Experiment." Buxton was the guest of honor at a ceremony at Tuskegee University. It marked the twentieth anniversary of the official White House apology for the syphilis experiment. The audience in Tuskegee included family members of the men involved in the study. They were all helped when Buxton and the Associated Press broke the story in 1972. He says, back then, the turning point was a lunchroom chat with a co-worker at the U.S. Public Health Service.
"I'll never forget what he was saying, he said 'the patient was insane and desperate need of some kind of help, the family didn't know what to do,' they weren't sure what was going on."
This lead Buxton to dig deeper. What he found was a medical conspiracy...
"There is the study being run down in this place called Tuskegee and everyone in the study is black," Buxton recalls. "What's going to happen with the civil rights movement when they find out about it, so eventually the civil rights movement found out and people were very unhappy about it."
Buxton uncovered a program at the Public Health Service of finding African-American men from rural Alabama who had syphilis. Instead of treating these patients, the disease was allowed to progress while researchers took notes. It had been going on since 1932. Buxton recalls one doctor in Tuskegee who got into trouble for trying to treat one of the subjects with antibiotics...
"The poor doctor who did the right thing had the medical society and the county health authorities jump down his throat, 'look what you've done, you treated one of these guys, you're not supposed to treat them,' says Buxton. "If he had had, let's say pneumonia, there would have been a procedure to go through, some paper work, to get permission to save the guys life for Christ's sake...ah, you don't know what to make out of a thing like that."
Buxton tipped off a reporter from the Associated Press and the story soon broke.
"While the men started out just wanting just for me to settle their lawsuit and get an apology and they wanted a permanent memorial here," says attorney Fred Gray. Before Tuskegee, Gray's client list included civil rights icon Rosa Parks. "And without remembering it, we cannot make amends and we cannot go forward. Gray sued, the government settled, and in 1997 President Clinton gave the subjects of the Tuskegee Syphilis Study the words they wanted to hear...
"What the United States' government did was shameful," said President Clinton. "And, I am sorry."
"This is actually a copy of my great granddaddy's death certificate, and it actually indicates that he died from syphilis," says Lloyd Clements. He attended a gathering over the summer to remember the twentieth anniversary of President Clinton's apology. Clements is from Tuskegee and several of his family members were a part of the study... "Initially my great grandfather Dan Collis, he was a member of the Tuskegee Syphilis Study and his son, Sylvester Collis was also a part of the Tuskegee Syphilis Study and his grandson Ludie Clements was also a part."
Clements says his family has gone through a variety of emotions being a part of one of the dark chapters of Alabama and U.S. history...
"Initially there was a lot of hurt and anger involved knowing my family was involved in it.," says Clements. "Then the initial hurt turned to grief and sadness then finally it turned to forgiveness on my part for my family."
While the Tuskegee scandal symbolizes the low point in rural health in Alabama, there is an area where the state appears to be making at least some progress. It's a system where if rural residents can't visit the doctor, the doctor may be able to visit the patient over the internet. APR's Alex AuBuchon explains...
"So how is everything today?" "It's good. Everything's good."
I'm Alex AuBuchon, APR news. Mary Epp is 84 years old and a home dialysis patient. She's at a routine follow-up appointment with her endocrinologist, Dr. Eric Wallace at the University of Alabama at Birmingham School of Medicine. But Mrs. Epp isn't in Birmingham. She's at the Dallas County Health Department, seventy five miles to the south.
"They can not only see each other face-to-face, but they can use enhancements to listen to the heart rate, to monitor the EKG, to look into the ears, the eyes, the nose, the throat," according to Dr. Walter Geary. He's Medical Director for the Alabama Department of Public Health. Thanks to telehealth equipment at several county health departments across the state, Dr. Wallace is able to provide Mrs. Epp and many other patients a full-fledged checkup hundreds of miles apart. We met up with Wallace at a state conference on telehealth...
"Probably 80 percent of what physicians need to do can be done by listening to the patient," says Dr. Wallace." But we also need a physical exam. So what happens is I use a telestethescope to listen to the patient's heart and lungs and abdomen. I use specialized cameras to look at lesions, in dialysis patients, the exit site."
Dr. Wallace says providing care remotely is more than a convenience for these patients. He says it's quickly becoming a necessity, given the state of health care in Alabama.
"If we had 500 doctors to land in Alabama today, we still wouldn't have enough," says Ron Sparks. He's a rural health care and telehealth advocate "If we had 250 dentists land in Alabama today, we wouldn't have enough. So access to health care is definitely a problem in the state of Alabama. Using technology and using telemedicine is a way to reach folks who don't have access to health care."
Sparks previously headed the state's Office of Rural Development under Governor Bentley. He says the expansion of telemedicine is inevitable. "You've either used telemedicine, or you will use telemedicine,' claims Sparks. "It's gonna happen."
There are currently a several different small, regional telehealth networks offering different telehealth services. Dr. Wallace says he wants to see those providers work together. "My real vision for Alabama is that you have one overriding way of linking all of those networks together to create, really, a comprehensive network that is far reaching and able to link any provider with any patient across the state."
The Alabama Department of Public Health is taking the lead on developing that network. Jessica Hardy is the director of the Office of Women's Health at ADPH. "We have a very new telehealth program within the Department of Public Health, so we are growing, and we are being charged to try to go into eleven different areas of subspecialty at this time," according to public health medical director Dr. Walter Geary says the possibilities are nearly endless. "That could be done for just the entire state of Alabama, if we had the bandwidth to do that, for a huge variety of problems and complications. All kinds of chronic illnesses, from diabetes to Chron's disease, to ulcerative colitis, to diabetic ulcers of the feet... All those kinds of things require daily treatment management, but intermittent physician oversight."
Bandwidth is one potential hurdle to a widespread adoption of telehealth. Many rural areas in the state don't have consistent cell service, much less broadband internet. And supporting the high-resolution video conferencing along with medical readings in a telehealth visit requires a lot of bandwidth. Ron Sparks says it's hard to understate the importance.
"If you live in rural Alabama in today's world and you don't have access to broadband, that's like cutting off one of your main arteries to your heart," says Ron Sparks. "You're just not going to function very well. Big industry is not going to look at you. You're not going to have the health care that you deserve. You possibly could not have the emergency care, the public safety care..."
But the Alabama Department of Public Health has an unusual leg up. Thanks to a state mandate, county health departments have special broadband infrastructure and 60 of Alabama's 66 counties currently have the bandwidth for telehealth, even if other areas of those counties don't.
Another model is gaining lots of steam across the border in Georgia – telemedicine systems in school. "The child's there at school all the time. That school nurse probably knows that child pretty well," says Sherrie Williams, who works with the Global Partnership for Telehealth, based in Georgia
"What if she is able to take that child to the next level by providing these care services into the mix? So it really becomes a whole lot bigger than just that primary care model. It truly can create a system of care."
Williams says school-based telehealth can fill major gaps in community health care, especially after rural clinics or hospitals in those areas close. "When a hospital closes, usually those primary care doctors leave also, so you're left with a huge void. Not only for the children, but you're talking about entire populations at this point in time. So I think being able to put telehealth inside the schools is a huge step in the right direction in figuring out how to fill that health disparity in our rural communities."
Unfortunately, the model in Georgia isn't possible in Alabama, at least not yet, because of Medicaid regulations. State Medicaid rules don't consider schools an acceptable place to receive healthcare. That's not the only way Medicaid regulations are posing a bigger problem to telehealth. Alabama doesn't have what's called a "parity law" in place. That assures doctors get paid the same rate whether they see a patient remotely or in person. Georgia does, as well as Mississippi.
"Just across the border in Mississippi, their telehealth program has been going on 15, 16 years now. Michael Smith is the director of telehealth for the Alabama Department of Public Health. They have about 6,000 telehealth encounters each and every month. We can benefit from the successes that they have made, but still have a lot of work to do in terms of development of our program."
Alabama is starting on the back foot in terms of telemedicine. But Dr. Wallace is optimistic about the near future. "What I foresee, with all the progress we've made thus far in the state, I foresee that this time next year, you will have multiple subspecialties at UAB providing care across the state. Important care, care that we need to actually improve the outcomes of patients in our state."
All of the rural health solutions we've looked at so far have a price tag to consider. And, as we wrap our program, APR's Pat Duggins explains how Alabama fall short here as well.
"We're losing about a million dollars a year," says George Alford. He lives in rural Wilcox County. And he's not talking about his family budget... Alford is on the board of John Paul Jones Hospital in the town of Camden. "We couldn't even groceries delivered to do the meals without pulling some strings with some people to get enough money to pay off...for bread."
Elizabeth Kennedy shows us around. She's the Chief Executive Officer at John Paul Jones. Before you ask, the hospital isn't named for the famous Naval War Hero. Dr. Jones was a prominent physician in Camden. This hospital is a cash strapped facility in a poor county. Very poor. In fact, in 2014, the U.S. Census Bureau listed Wilcox County as the most impoverished county in the nation. For rural hospitals in Alabama, there's an area where they rank badly as well...
"If you're talking about Medicare, yes," says Danne Howard. She's Chief Policy Officer for the Alabama Hospital Association. Howard says eighty percent of the rural hospitals in Alabama are losing money...
"Healthcare is an odd bird, as far as what is billed, what it costs, and what is reimbursed," she says. "Take Medicare for example. That's the federal insurance program for the elderly. Rural hospitals in Alabama complain they get paid the lowest reimbursement rates in the U.S. Danne Howard says that because those rates are based on what hospital workers are paid, and that's where Alabama's rural hospitals get into trouble...
"They've even remained level, or they've even had to have some reductions and some staff layoffs," says Danne. "And so, we're showing we're not paying as much wages as other states, so, guess what happens? We lose money for the States that are paying higher."
In Alabama, rural hospitals get sixty to seventy cents from Medicare for every dollar's worth of treatment of service they provide the program. George Alford says John Paul Jones Hospital in Camden gets even less than that... "We collected, I think thirty some odd percent of that..." T
There are plans in Congress to try to adjust Medicare reimbursements to make them more fair. Alford says that wouldn't help because of what his hospital is paid by private insurers and Medicaid for the poor. He says they pay even less. "Ten percent on Medicaid. Then, Blue Cross Blue Shield and your other private insurers we collected about forty percent."
Simply put, John Paul Jones is swimming in debt.
Last month, the board announced it would close the hospital. But, George Alford says there was a "plan B" ...a proposed one penny hike in the county sales tax with the money going to the hospital. "It gives us a chance...a legitimate chance of continuing to serve, rather than folding out tent and saying 'well, it's been nice.'" But, not everyone's happy about it...
"It's a terrible policy solution. It's no way to run a hospital," says Jim Carnes. He's the Policy Director for Alabama Arise, a citizen's advocacy group out of Montgomery. "It's a real shame to put the burden of keeping that hospital open on the backs of Wilcox Countians, who are facing some of the stiffest economic statistics in the state and the country."
One irony is Alabama Governor Kay Ivey is from Wilcox County. Alabama is one of the states that rejected a plan to expand Medicaid with incentive dollars from Washington. Alabama Arise believes that could help hospitals in peril like John Paul Jones in Camden. Carnes plans to bring the idea back up in the 2018 legislative and he hopes Governor Ivey is listening...
"We haven't heard the Governor say much about the fact that this is happening in her hometown. But, I hope that's keeping her up at night. Because she knows these people. They are her people."
Supporters of John Paul Jones Hospital in Wilcox think they'll get permission from State for the one penny sales tax hike they want. That could keep services like this automated blood sample unit operating for now. Alabama Arise's goal to get Governor Kay Ivey to expand Medicaid coverage may be less successful. One of her first acts in office was to disband a task force that was looking at many of the rural health innovations we've talked about during this program.