In their latest attack on the Affordable Care Act, House Republicans are questioning why the Obama administration transferred money last year from the National Institutes of Health and the Centers for Disease Control and Prevention to pay for the operation of the federal health insurance marketplace.

“Now it appears that we are robbing Peter to pay Paul in order to finance the disaster that is healthcare.gov,” said Rep. Jody Hice, a Republican congressman from suburban Atlanta.
Hice complained at a hearing last week that the Department of Health and Human Services shifted millions of dollars last year from those agencies to help pay the $1.4 billion cost of running the insurance marketplaces in 37 states, according to an HHS spending document.

But HHS officials say they have authority to move money between agencies that are under their jurisdiction. And they note that only about 0.25 percent of each department’s funding – about 50 in all, including global health and AIDS and substance abuse treatment programs — was used to finance the exchange.

Congressional Democrats did not appropriate sufficient funding to support the startup and operation of the federally run exchange, partly because they expected most states to run their own marketplaces. More than three dozen states decided to rely on the federal government, leaving HHS scrambling to find money to do the job. In 2013, HHS took $454 million from the $15 billion Prevention and Public Health Fund, created by the health law, and $158 million from the health law’s Health Insurance Reform Implementation Fund, according to the Congressional Research Service.

In 2014, the single largest dollar amount that was transferred within HHS — $34.2 million — came from the Low Income Home Energy Assistance program, which helps poor people heat their homes in winter. Another $12 million came from the National Cancer Institute and nearly $11 million came from the National Institute of Allergy and Infectious Diseases. In contrast, the state-run exchanges received an “indefinite appropriation” from Congress to support their operations until this year when they were supposed to become self-sufficient. However, the federal exchange could not tap that money. Both the state and federal exchanges are also supported by premium taxes paid by those buying health plans in the marketplaces.

HHS officials say they have used their authority to transfer funds from one budget category to another when faced with pressing needs before, including paying for cybersecurity protection, caring for unaccompanied children caught crossing the U.S.-Mexico border and helping states provide medicines to individuals living with AIDS.

Sabrina Corlette, senior research fellow at Georgetown University, said the Obama administration is doing the best it can with funding limitations from the law and a resistant Republican controlled Congress. “A successful launch of the exchanges and health reform in general is a huge priority for the administration and in their first year of operation the user fees (from the exchange) are not completely covering their costs,” she said.
“They are having to run exchanges in more states than anyone anticipated …and they did the best they could with the cards they were dealt,” Corlette said.

Joe Antos, a health economist at the conservative American Enterprise Institute, agrees that officials can shift money between departments within their jurisdiction.

“There is no issue on whether they have the authority to do this,” he said, “but the question is whether this is the best way to fund the federal exchange.”

Antos questioned whether the federal exchange is costing the federal government more money not just because more states are using it than originally envisioned, but because of the technological problems that caused sign-up delays during the first open enrollment period in the fall of 2013.

President Barack Obama’s 2015 fiscal year budget proposed about $1.8 billion to operate the federal exchange, of which nearly $1.2 billion would come from the premium tax and $629 million would come from Centers for Medicare & Medicaid Services, according to a Congressional Research Service report last October.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

When my mother, Pauline, was 70, she lost her sense of balance. She started walking with an odd shuffling gait, taking short steps and barely lifting her feet off the ground. She often took my hand, holding it and squeezing my fingers.

Her decline was precipitous. She fell repeatedly. She stopped driving and she could no longer ride her bike in a straight line along the C& O Canal. The woman who taught me the sidestroke couldn’t even stand in the shallow end of the pool. “I feel like I’m drowning,” she’d say.

A retired psychiatrist, my mother had numerous advantages — education, resources and insurance — but still, getting the right diagnosis took nearly 10 years. Each expert saw the problem through the narrow prism of their own specialty. Surgeons recommended surgery. Neurologists screened for common incurable conditions.

The answer was under their noses, in my mother’s hunches and her family history. But it took a long time before someone connected the dots. My mother was using a walker by the time she was told she had a rare condition that causes gait problems and cognitive loss, and is one of the few treatable forms of dementia.

“This should be one of the first things physicians look for in an older person,” my mother said recently. “You can actually do something about it.”

‘Did Mom Tell You? She Fell Again.’

The falls started in 2004. My mother fell in the bedroom of her Bethesda home. She fell in the airport while returning from a trip to see my sister. Sometimes she told me, and sometimes a sibling would call or e-mail. “Did Mom tell you? She fell again.”

Millions of older adults fall every year, but it was my mother’s uneven gait that tripped her up. She was unsteady on her feet; the slightest incline threw her off stride. Sometimes she quickened her pace involuntarily. Sometimes she bent over before straightening back up.

She went to doctor after doctor. “I want a diagnosis,” she would say before the next appointment with a neurologist, geriatrician, urologist or orthopedist. “I’m convinced this is something organic — that it has an underlying biological cause.”

A series of neurological evaluations ruled out the obvious suspects: My mother didn’t have the tremor typical of Parkinson’s, a devastating, progressive disorder, and she did well on cognitive tests, so it wasn’t Alzheimer’s disease.

Next, my mother went to see an orthopedic surgeon. He said she had stenosis, or a narrowing of the open spaces of the spine, and recommended surgery. She underwent a complicated, potentially dangerous back operation, and she seemed to be walking more smoothly afterward — for a few months.

As time went by, though, she developed other symptoms. Perhaps because she wasn’t exercising, her blood pressure went up. She gained weight and was at risk for diabetes. She developed a persistent hacking cough, but no one could identify the cause since her lungs were clear.

She was also having trouble getting to the bathroom on time, so she had more surgery, this time to implant mesh designed to alleviate urinary incontinence. Medicare and private insurance picked up the tab, but once again the relief was temporary.

The bad news was that it had taken so long to get the diagnosis that some of the damage may be irreversible.

My mother had always been terrified she would lose her memory. Her mother, Helen, who died in 1988, had spent the last five years of her life bedridden, unable to walk and oblivious to her surroundings. Any physician who took a careful family history would know that my mother suspected Helen’s dementia was caused by normal pressure hydrocephalus, or NPH, a buildup of cerebrospinal fluid in the brain that causes difficulty walking, urinary incontinence and cognitive loss, in that order.

When my mother met with specialists, she floated the idea that she might have NPH. In some ways, she hoped that was the diagnosis, because it often can be treated by implanting a small shunt into the brain to drain off the excess fluid.

Around this time, another neurological evaluation that included MRI scans of the brain revealed that my mother had enlarged ventricles. Ventricles are the cavities in the brain that are filled with cerebrospinal fluid, and their enlargement suggested any number of conditions, including brain atrophy and Parkinson’s. They are also considered a red flag for NPH.

A neurologist in Bethesda had briefly considered NPH. He had done a spinal tap to withdraw a small amount of cerebrospinal fluid but ruled out the diagnosis when he saw no immediate improvement in my mother’s gait. But he may not have withdrawn enough fluid to see a change, experts told me.

One feature of NPH is passivity. My mother was forgetful at times, but what was more striking was her lack of initiative.  She didn’t make plans as she used to. She’d start a knitting project and drop it. She may have been less aggressive than normal about pursuing her hunch about NPH being the source of her trouble. “One doctor told me, ‘This doesn’t run in families,’ ” she said.

‘We Believe It’s Overhyped’

Two years ago, doctors finally got it right.

My mother and stepfather had gone to visit friends in Gainesville, Fla. They urged her to make an appointment at the University of Florida’s Center for Movement Disorders and Neurorestoration.  Doctors there suspected NPH as soon as they saw my mother walk across the room. They recognized the shuffling gait and what they call “magnetic” footsteps that seemed glued to the floor.

They sent her for additional tests, including a spinal tap to see if her walking improved after a large amount of cerebrospinal fluid was withdrawn — it did — and another imaging scan to rule out the possibility that the buildup was caused by an obstruction, such as a tumor.

Inserting a shunt is a dangerous operation: A thin tube is implanted in the brain to drain excess cerebrospinal fluid and release it into the abdomen.

“For some patients, [the surgery] can be life-changing,” said Michael Oaken of the movement disorders center. But it is a high-risk operation, he said, especially in the elderly.  About a third of patients who have shunt surgery experience a complication, such as an infection or a brain bleed that can lead to brain damage or death. “You have to be careful. A lot of people are shunted inappropriately,” Oaken said.

Why was my mother’s diagnosis missed by so many, and for so long?

A friend whose mother was diagnosed with NPH by a gerontologist early on in the course of her disease told me the doctor made the diagnosis after seeing a story about NPH on “60 Minutes.”

But for many physicians, “the possibility just doesn’t come to mind,” said Michael Williams, who serves on the medical advisory board of the Hydrocephalus Association, an advocacy organization, because it’s so rare.

Physicians are trained to search for the most obvious, common conditions first. Although NPH was first described in 1965 and is taught in medical schools, the diagnosis is controversial, even contentious. There is no definitive test, and some experts have questioned whether it is a real syndrome. Studies of patients who had shunts inserted have had mixed results, and randomized controlled studies will probably never be done, both for logistical and ethical reasons.

Daniele Rigamonti, a neurosurgeon at Johns Hopkins School of Medicine who wrote and edited a textbook about NPH, is convinced that it is underdiagnosed and that many nursing home residents who seem to have Alzheimer’s or Parkinsons’ dementia may actually have NPH.  He says it’s important to diagnose it early, before the buildup of pressure on the brain causes damage as the enlarged ventricles displace and compress adjacent brain tissue.

“To wait for the full triad [of symptoms] is foolish,” he said, referring to the three symptoms that define NPH: gait disturbance, incontinence and dementia. Even though it is a challenge to diagnose NPH when the only symptom is gait impairment, he said, “you don’t wait for a cancer to metastasize and spread to the brain before you recognize it.”

Bryan Klassen, an assistant professor of neurology at Mayo Clinic, is not convinced. He contends NPH is extremely rare and is not being missed.

“We believe it’s overhyped,” he said, adding that the surgery is dangerous, “and a lot of the time the results are underwhelming.”

Lasting Improvements

My mother had shunt surgery two years ago, when she was 79 years old. The surgery lasted less than an hour and a half. I’m only writing about it now because surgical interventions, like sugar pills, can have placebo effects that don’t last very long. But I noticed a change immediately.

My mother went home the day after surgery, and my stepfather brought flowers. And then my mother did something that she hadn’t done in years: She walked over to the kitchen counter, gently removed the flowers from the paper wrapping, clipped and cut the stems and arranged them in a vase in a striking arrangement. She had always had a flair for flower arranging but hadn’t seemed interested for quite a while.

Today she is dramatically improved; her walking, memory and concentration are all better. Still, I can’t help wondering: Did the delayed diagnosis result in some permanent cognitive impairment?

She’s much less passive and can actually be very persistent. She asked me to write this article to inform people about NPH. “Have you written the article yet?” she asked recently when I called. “Please, write it.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

BURNSVILLE, N. C.—It’s been a bitterly cold winter in the Blue Ridge Mountains for Julia Raye and her 13-year-old son, Charles. But despite the punishing weather, 2015 has been looking good: Raye is finally able to afford insulin and the other medications she needs to keep her diabetes under control.

She’s a self-employed auditor who relies on a $400 per month government subsidy to afford the private health plan she bought on healthcare.gov, the online federal marketplace for health insurance.

Before the Affordable Care Act made tax credits available to low- and moderate-income workers, Raye was uninsured. Back then, just one of her diabetes medications cost her $320.

“During that time, I had no insurance, and I really wasn’t taking my medicine. There were times when my sugars and things would get up to 600,” Raye said. “I remember getting to a point where the ambulance had to go take me in because I was pretty much in a diabetic shock.”

On Wednesday, the U.S. Supreme Court will hear oral arguments in a case that could cripple the Affordable Care Act and imperil financial assistance to 8.2 million health insurance shoppers like Raye in the states that rely on the federal health insurance exchange.

Since January 2014, Raye has had steady insurance, paying just $30 a month, while her son was covered by Medicaid, the public insurance program for low-income people. Treating her diabetes has improved her vision and the numbness in her feet, and, at age 48, she has gotten a long overdue mammogram.

Raye says she is watching the latest legal challenge to the Affordable Care Act with growing anxiety. If the court wipes out her subsidy, Raye says she wouldn’t be able to pay for treatment. Her diabetes would again worsen, she would be unable to work and she and her son would face financial ruin, she says.

In North Carolina, nine out of ten people who buy health coverage on the federal exchange receive a subsidy. If large numbers of people here and in other states lose financial assistance and drop their insurance, health policy researchers say insurance markets will be thrown into disarray.

“If you imagine someone who’s paying a hundred bucks a month and, all of a sudden, it’s $415 a month, which would be the average impact, then you could imagine some people are going to stop paying,” said Donald Taylor, an associate professor of public policy at Duke University. “You would imagine that the ones who wouldn’t stop paying would be the people who are the sickest, who need the insurance the most. And when you have only the sick people enrolled, that’s when you have what’s called death spiral.”

Health care economists say that would likely happen across the country. In three dozen states, the insurance marketplaces are run by the federal government because state lawmakers opted not to set up their own. If the Supreme Court wipes out financial help for those shoppers, the number of uninsured is expected to rise by 44 percent. The fallout would be heavily concentrated in the South: estimates show that of those who could become uninsured, 62 percent live in Southern states and 61 percent are white.

The Supreme Court last considered the Affordable Care Act three years ago in a case challenging the law’s constitutionality. Some court watchers say the fact that the justices agreed to hear this case—which many legal scholars considered a trivial statutory flaw—shows a renewed desire by the Court’s conservatives to upend the health law.

The lawsuit arose after a group of conservatives dissected the law after its passage. They noticed a six-word phrase that said financial assistance would be available to those who bought health plans through “an exchange established by the state.”

Michael Cannon, director of health policy studies at the Cato Institute, a conservative think tank, says the lawsuit “is about is the latest and most dangerous in a long line of false promises that the president had made about Obamacare. And this is not just a false promise, it’s also an illegal one.”

For its part, the Internal Revenue Service concluded Congress never intended to limit subsidies to shoppers only in state exchanges, and it issued a rule making them available in all states.

“With a colleague, I blew the whistle on this, and we complained the administration had no authority to do this,” Cannon said. “We began doing the legal research, we found out that this was actually an intentional feature of the law that the president was trying to rewrite.”

Rep. Sandy Levin, a Democrat from Michigan who chaired the Ways and Means Committee during passage of the health law, disputes Cannon’s assertion.

“That is just totally wrong,” Levin said. “I think the letter of the law, when you read the entire law, says that these credits were to be available to everybody, whatever exchange they were in.”

Even those who objected to the law never raised those concerns, he said. “What the opponents are trying to do is to look for any hook they can find, and the court should not allow them to find a hook that isn’t in existence that would tear apart the entire law.”

In Raleigh, N. C., that is exactly what Anna Beavon Gravely hopes will happen. Gravely is a community activist at North Carolina Family Action, a conservative political group. Now 26 years old, she has had to buy insurance on her own for the first time and was shocked by the cost.

“I don’t really see the return on it,” Gravely said. “It’s one thing to have [to] pay a monthly amount for cable or for Netflix, or HuluPlus, or a gym membership, because you’re getting something out of that. I feel like I’m not really getting anything out of my virtually $200 a month.”

Gravely says she rarely visits a doctor and doesn’t want the added benefits that the health law requires insurers to offer, including mental health and maternity coverage. She hopes the Supreme Court declares North Carolinians ineligible for financial assistance.

“I think that will help a lot of people understand the true cost of health care and what this does, how it’s driving up costs,” Gravely said. “It’s increasing the burden on middle-class families, on individuals like me who just want to have a plan that fits them and where they are in their life.”

More than four hours west of Raleigh, in the Blue Ridge Mountains, Julia Raye says health insurance was plenty expensive before the health law, when pre-existing conditions, including her diabetes, were not covered.

“I want to be able to go out and buy insurance,” Raye said. “But when they come back with figures like $800 a month, that is not logical. It’s half of what I bring in a month. I need this subsidy. This is what makes me be able to subsist. And there’s just no way I could function without it.”

After the Supreme Court hears oral arguments on Wednesday, a decision is expected by the end of June.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Transcript:

MARY AGNES CAREY: Welcome to Health on the Hill, I’m Mary Agnes Carey. The Affordable Care Act is headed back to the Supreme Court.  At stake are millions of subsidies that help people in more than three-dozen states afford health care coverage. Julie Rovner, a senior correspondent for Kaiser Health News, joins me now to discuss the case.  Hi Julie.

JULIE ROVNER: Hi, Mary Agnes.

MARY AGNES CAREY: What’s this all about? Lay out the case for us.

JULIE ROVNER: Well, it’s certainly not about the constitutionality of the Affordable Care Act. A lot of people are saying that. This is what’s known as a statutory interpretation case, something else that the Supreme Court tends to do when there’s an argument over what Congress meant.  Basically, the Supreme Court acts as a referee. And that’s basically what they’re doing here.

MARY AGNES CAREY: And what are the legal arguments on both sides?

JULIE ROVNER: Well, the challengers in this case say the phrase “established by a state” means that only tax credits that are given out in state exchanges are allowed. And that means, as you mentioned, more than three-dozen states that are using the federal exchange, healthcare.gov, can’t provide tax credits to people. Now they say Congress intended to do this in an effort to pressure states to create their own exchanges.  Those on the other side, including the government and the people who wrote the law say that’s not the case at all. It was just sort of an odd way that sentence was written and Congress always intended for tax credits to be available to everyone regardless of whether the exchange was established by a state or the federal government.  And that’s basically what’s at stake here.  We’re looking at a regulation by the Internal Revenue Service that implements that portion of the law that tax credits and the IRS said that everyone should be able to get those tax credits.

MARY AGNES CAREY: Everyone to receive them whether in the state or the federal exchange.

JULIE ROVNER: That’s right. Everybody who’s eligible regardless of who’s running the exchange.

MARY AGNES CAREY: So what happens if the court rules that people in the federal exchanges can’t get these subsidies any longer?

JULIE ROVNER: Well both sides agree on this; and the answer is basically chaos. It would be kind of a mess. Several states actually tried to reform what’s called the non-group market, the individual insurance market, by making insurance available to people with pre-existing conditions but without help for other people to buy insurance or to require them to buy insurance. And it did not work very well. In Kentucky, basically every insurer left the state when they tried it in the 1990s. There are various estimates. Somewhere around 7.5 million people would likely lose their subsidies. Because of the way the law is written, if insurance costs more than 8 percent of your income, you’re not required to buy it. So most of those people would not buy insurance. They wouldn’t have to. The people who would buy insurance are probably the people who need it the most. That would result in a risk pool that is sicker and therefore premiums would have to go up. Estimates are that premiums would go up somewhere in the neighborhood of 35 to 45 percent. Obviously for people who were getting subsidies, their costs would go up enormously. The average subsidy is about $268 and that covers somewhere in the neighborhood of three-quarters of their premium. So they would basically be priced out of these markets. Insurance companies are very worried about this. Hospitals and other health care providers are also worried about this. They’ve all written amicus briefs to the court saying this would be a real disaster if the subsidies were not available in these states where the federal health exchange is being used.

MARY AGNES CAREY: So on Wednesday we’ll have the oral arguments and then the judges begin their deliberations. Take us through some of the issues that guide those deliberations.

JULIE ROVNER:  Well as I mentioned this is what’s called a statutory interpretation case. They have to decide whether Congress intended for the subsidies to be available in the state and federal exchanges or just in state exchanges. And mostly when they get these cases, they use what’s called Chevron Deference, that’s a reference to a 1984 case. The way it works is that first it’s a two part test. They look at the language of the law and they say, “Is it straightforward or is it ambiguous?” If they find it ambiguous, then they are suppose to defer to the agency, in this case the IRS, as long as the IRS’ interpretation isn’t unreasonable. That’s why the challengers in this case are trying to make the case that Congress intended for the tax credits to be denied to people using the federal health exchange because that would make the IRS’ interpretation unreasonable, because only if the interpretation is unreasonable, would the Supreme Court then overrule it.

MARY AGNES CAREY:  There’s also some issue involved where if the federal government is going to change something with the states, they have to tell the states they’re doing that. That’s one of the issues here.

JULIE ROVNER: That’s right, a number of states in their court filings are saying that when they were deciding whether or not to have a state exchange, they didn’t know, no one ever told them there was a possibility that their residents wouldn’t get these tax credits if they didn’t create an exchange and that’s a violation of other sort of previous court rulings that said you can’t limit things, that you can’t limit what they states get if you don’t tell them what their options are. And frankly as someone who covered this law from its inception, I certainly never heard anybody talk about the idea that only states exchanges would have access to the tax credits. It simply was never discussed.

MARY AGNES CAREY:  Thank you so much Julie Rovner, Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

HAYFORK, Calif. — It’s Tuesday morning, half past eight and already hot, when the small bus pulls up to the community clinic. Most of the passengers are waiting in front — an old man with a cane, two mothers with four kids between them, packed lunches in hand.

Two more arrive. A gray-bearded man with a pirate bandana steps from the shelter of his Subaru. A sunken-cheeked woman rushes up on her bike.

“Woohoo! We have a full car!” the driver says brightly after they’ve all climbed aboard. The riders smile back, some with a hint of resignation. It’s time for the weekly trip to the clinic in Mad River, about 30 miles down a winding mountain road near the Trinity Alps. The tight twists and turns are hard on the stomach, but even harder on the joints — especially if you have chronic Lyme disease, as more than a few of these riders do.

Jeff Clarke, the 58-year-old in the black bandana, has Lyme, acquired long ago from deer ticks that dwell in the region’s sprawling forests. But today he’s going to ask about a lump that’s been growing in his left breast. It’s starting to hurt, and he’s worried. His fellow riders list their own ailments matter-of-factly: asthma, dental decay, diabetes, drug addiction, heart disease and much more.

They wouldn’t be making this trip if they didn’t have to. In Hayfork, “we’re down to the remnants of the medical personnel,” says Clarke, a well-spoken musician with a love for science, cats and NPR. “It just came to the point where if I needed to deal with anything important I just felt much more comfortable going over to Mad River.”

Like so many isolated American towns, Hayfork has lost its vitality and much of its youth to bigger places. For all its tree-lined ridges and breathtaking views, Hayfork is well beyond the tourists’ byways — more than an hour from the city of Eureka on the west and Redding on the east. It’s a 45-minute drive just to Weaverville, the tiny Trinity County seat.

Whether they’re too poor to leave or charmed by the star-filled skies, Hayforkers have mostly made their peace with isolation: No retail stores, theaters, museums, fancy restaurants – and Internet access that is iffy at best.

“We were always 20 years behind everything,” says Shannon Barnett, a 41-year-old a former school teacher who grew up here. “We were all just fine with that. Now it’s different.”

She’s referring to the exodus of basic health services.

For decades, Hayfork had been fortunate. Well after the rise of urban health systems and their intricate business models, it had a tight-knit local “system” founded on the simple, generous commitment of two people: a general practitioner and a pharmacist.

“He was everybody’s doctor,” Barnett says of Dr. Earl Mercill, a GP who moved up from the Central Valley almost 50 years ago. “You never thought about going to anyone else.”

But it’s been years since Mercill retired. Now his clinic is staffed by doctors who rotate in from Weaverville once or twice a week, and otherwise it’s run by physician’s assistants. There are no hospitals for miles, though helicopters swoop in for emergencies when needed.

The Mad River clinic isn’t an ideal alternative.  It’s bigger than Hayfork’s and offers a wider array of services but it’s still staffed mostly by physician’s assistants and about an hour away by bus. It’s so backed up with patients it can take weeks to get an appointment, Clarke says.

In these tiny towns of California’s  far north, lacking insurance is not the biggest obstacle to care. Even before Obamacare took effect, about four of five people were insured, roughly the same as in the rest of the state. A good number are on Medi-Cal.

What’s ailing these people is geography – that, and poverty. The median household income in Hayfork is about $34,000 a year, well below the statewide figure of about $60,000, according to the American Community Survey.  Unemployment is extraordinarily high – estimates range between 9 and 26 percent. Many people lack a sturdy car to drive, or even money for gas.

In the federal government’s parlance, Hayfork is a “medically underserved” community – one of roughly 3,500 in the country and 170 in California, according to the federal government’s latest numbers. By definition, these areas have too few primary care providers, high infant mortality, pervasive poverty or a significant elderly population. Some are islands of deprivation within otherwise well-stocked urban areas. Others are dots on the map like Hayfork, far from where doctors and medical services are clustered. According to the National Rural Health Association, only about 10 percent of physicians practice in rural America, where nearly a quarter of the population lives.

Health care is available on the other side of the mountain, says Greg Schneider, a 65-year-old writer and band mate of Clarke’s. “The problem,” he says, “is getting there.”

Lumberjacks and Janes

In 1967, long after its rise and fall as a gold-mining town, Hayfork struck it rich. That’s when a friend told Mercill, then practicing in tiny Arvin, Calif., that an even tinier town south of Oregon badly needed a doctor.

Mercill was intrigued. He visited a few times with his large and growing family (he and his wife Marianne eventually raised eight kids, four of them adopted).

Hayfork was still a mill town then, filled with lumberjacks and janes, as the women were known. It had restaurants, shops and even a thriving art and music scene.

After praying on the decision, the family moved up north, built a house and settled on 40 acres outside town. A few months afterward, Mercill opened his clinic downtown.

He was beloved almost from the beginning. He made house calls in the middle of the night — sometimes walking over precariously narrow log bridges or shuttling to his patients’ homes by snowmobile.

He delivered babies by flashlight after storms knocked down power and waited by his patients’ bedsides for hours until they felt better, sometimes charging little more than a slice of cake.

“If they didn’t have any money, I saw them,” Mercill recalls, frail now, but with a keen long-term memory. “If they could pay later, fine. If they didn’t, they didn’t. I never went hungry.”

Mercill couldn’t do everything, of course. If a patient needed a specialist or surgery he sent them to colleagues in Redding or Weaverville. Sometimes he drove along with them and assisted in the operating room.

Click to view slideshow.

In 1982, pharmacist Gerry Reichelderfer came to Hayfork, also on a friend’s recommendation. He fell in love with mountain life, and took over the drug store next to Mercill’s clinic.

Reichelderfer lived just seven minutes and a single stop sign away from his shop. He’d drive over and open up anytime people needed a prescription. If they couldn’t pay right then, he’d put it on an I.O.U. or let it slide.

The men joined forces, talking daily by intercom. The partnership would last nearly two decades.

A Turn of Fortune

In the late 1980s, the logging industry started to crumble. Under pressure from conservation groups, the mills in Northern California dominoed shut. By the time Hayfork’s mill closed in the mid-1990s, the population had dwindled to the low thousands.

“When all the workers left, they took all the families and young children,” says Rick Simmons of the Trinity County Historical Society.  “What was left over was people unable to go anywhere.”

Homelessness, poverty and drug addiction took hold. An underground market began to sprout around marijuana — bringing drifters, seasonal trimmers and unofficial security forces to town. The forests became a dangerous place to wander.

Clarke, a runaway and hitchhiker in his youth, was in some ways typical of Hayfork’s new generation. He arrived in the 1980s, in the clutches of methamphetamine addiction, a habit he picked up in the bars where he played guitar. For years, he landed jobs and lost them — working as a wood chopper, sandwich maker and cabinet craftsman. He started seeing a woman he met in rehab, then split with her, but not before they had a daughter. They named her Stormy Brooke. He gained custody and lost it more than once.

He wanted to get sober for her, if not himself. Seeing no hope for professional help locally, he drove to a clinic in Weaverville. His first need, he told the counselor at the desk, was housing — a roof over his head.

“He repeatedly said that’s not my job,” Clarke says.

Clarke stopped trying to seek addiction treatment after that. “Most of the progress I’ve made in the last few years has been behind the 12-step stuff I do,” he says.

The meetings at Hayfork’s Solid Rock Church saved his life, he says. He goes every Monday and has been sober 10 years.

His health is ok, considering.  He lost his teeth. His bottom denture wore out long ago and his top one is breaking. He has high blood pressure, a detached bicep and hepatitis C from a jailhouse tattoo. He developed chronic Lyme disease because he wasn’t treated right away with antibiotics.

Nowadays, Clarke lives behind the Trinity County Fairgrounds, in a two-room trailer next to the town cemetery. Supported by $889 a month in disability insurance, he spends his time organizing 12-step meetings, reading library books and science magazines, and volunteering as a sound engineer for gigs at a local coffee shop. On good nights, he gets paid a little. Most important to him, he says, is staying as healthy as possible so he can look after 23-year-old Stormy and her 2-year-old son, Tony, who lives with his dad.

Stormy, a tall beauty too insecure to know it, cuts herself and has made several attempts at suicide. Her porcelain arms bear the scars.

“She has no self-esteem,” Clarke says. “She has no faith in love, or trust for any other human beings. She has some real darkness inside her, you know? I’m sure I’m responsible for a majority of that.”

In June, during a fight with her father, she had what Jeff thought was a stroke. En route to Redding in an ambulance, she started seizing so they put her on a chopper. At the hospital, the doctors said she’d had a stress-induced seizure.

After three hours, her doctors released her with a prescription for klonopin to control her seizures and panic attacks, and told her to follow-up with her primary care physician.

“I had to laugh,” Clarke says. “We’re in Hayfork!”

Like losing a limb

Dr. Mercill hung onto his clinic as long as he could, finally selling it to a doctor based in Weaverville. That doctor recently sold it to Trinity Hospital, part of the Mountain Communities Healthcare District, also based in the city.

The saddened community dedicated a clock to him in the town center.  “It was like a limb being cut off,” Barnett says. ”I know at first I didn’t have another doctor for a long time. Other people didn’t either. They bounced around for a long time.”

Every once in a while, Mercill treated people who asked, but he’s 91 now, and hasn’t done that in years.

Two of Mercill’s kids grew up to be medical professionals – one a dentist, another a physical therapist–but they live and practice in bigger towns. The other children also moved away. One son, Steve, moved back from Southern California 21 years ago to care for his mother before she died. Now he’s caring for his dad.

Reichelderfer carried on at his pharmacy after Mercill retired, lending credit to Clarke and others when he could. But the economics of health care shifted under his feet. His business began to struggle. The reimbursements from insurers were too low, he said, and the clinic next door — a long time ally — began referring patients to bigger stores in Weaverville.

In Trinity County, where Hayfork is located, medical services overall became hard to find. In 2012, according to the Office of Statewide Health Planning and Development, there were 11 medical doctors currently practicing, roughly one per 1,200 residents. Statewide, the ratio is roughly 1 per 300.

Specialists like dentists and psychiatrists are nearly non-existent here. That lack of specialty care – particularly in mental health – wears on some residents. Stormy Clarke says that when she feels a panic attack or depression coming on, she simply tries to breathe deeply and distract herself by keeping busy. She also has a medical marijuana card and smokes regularly.

A county behavioral office offers counseling in Hayfork, but a counselor isn’t there every day and in-person visits are by appointment only. Sometimes the most expedient treatment comes in jail — Clarke calls it the “nudge from the judge.”

He mentions an acquaintance named Robbie, who suffers from paranoid schizophrenia. Since being released from jail, he’s been off his meds, Clarke says. He walks up and down Hayfork’s main strip along Highway 3, muttering to passers-by about the many people who are after him.

“In cities, you have places like outpatient programs for these types of people to go to, every single day,” said Julie Bussman, a psychologist at the Mad River clinic. “It’s a real hardship for people who are severely mentally ill to live out here because there’s not a lot of resources.”

In August, Bussman quit and moved back to Minnesota, leaving no psychologist for miles.

Back on the Bus

After the bus pulls into the Mad River clinic — a remodeled blue cottage that used to serve as a the local forest service office — the riders start their wait. They are used to it by now: The kids pull out games and books; the adults chat in the waiting room or by a weathered picnic table on the back lawn.

Everybody has to be seen before the bus can head back.

On this day, Clarke is among the first in line. The physician’s assistant on duty examines his chest lump and advises against a biopsy, an invasive procedure, because he wants to run more tests. Clarke takes the news with some concern.

“I was pretty freaked out. I went in there with the agenda of the biopsy. They wanted to explore other options,” he says afterward.

By the time the bus gets back to Hayfork, it’s mid-afternoon. He drives back to his trailer, frustrated and spent.

A few Tuesdays later, he takes the bus back to Mad River and is referred to a specialist in Weaverville.

It is another two months before he learns the lump is a side effect of the medications he’s taking — a hypothesis he’d mentioned earlier to physicians and their assistants in Hayfork and Mad River.

Now he has to start thinking about replacing those dentures, which means another bus trip — or several – around the mountain.

The Final Loss

Reichelderfer, 82 and in failing health, began looking earlier this year for someone to buy his store. He looked for months. Even the independents weren’t interested, in part because pharmacists’ family members weren’t keen on moving to Hayfork.

With great sadness, he shut his doors on September 18.

“I wish I could have been able to sell it to somebody,” he said, “for the convenience of the people.”

From now on, Hayforkers will have to get a ride to Owens Pharmacy in Weaverville or to Walmart or CVS in Redding.

It took only a few days to board up a drug store open for 32 years.

It’s a relic now, standing just yards from the clock the town dedicated to Dr. Mercill, with his years of service gratefully memorialized on a plaque.

Heidi de Marco and Carol Eisenberg contributed reporting.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

BAYOU LA BATRE, Ala. — Bayou La Batre calls itself the seafood capital of Alabama. Residents here depend on fishing and shrimping for their livelihood, and when they sit down to eat, they like most things fried.

It’s here that former U.S. Surgeon General Dr. Regina Benjamin has been trying to reverse the nation’s obesity epidemic one patient at a time. Benjamin grew up near Bayou La Batre and has run a health clinic in this town of seafood workers and ship builders since 1990. As obesity became commonplace around the U.S., health care providers like Benjamin began seeing the impacts of obesity all around them.

“We saw our patient population get heavier,” Benjamin said. “We saw chronic diseases start to rise, and if we continued, our entire community would totally be crippled, basically, based on chronic diseases.”

Two major trends are on a collision course here, as in the rest of the United States: a decades-long surge in obesity and the aging of the U.S. population. Today, one out of every three adults in the U.S. are clinically obese, and many who have lived for decades with excess weight, diabetes and heart disease are now heading into their senior years. Obese people are far more likely to become sick or disabled as they age, and researchers say this burgeoning demographic will strain hospitals and nursing homes.

“We’re potentially going to have a larger, older population that’s more likely to be obese, surviving longer with cardiovascular disease and other chronic diseases,” said Dr. Virginia Chang, a demographer at New York University. “I think that the primary fallout from increasing obesity is probably not going to be some huge hit to mortality. It’s going to be disability.”

Those consequences may already be visible, researchers say. Lifelong obesity, now common across the country, is poised to undermine improvements in disability rates among older adults.

Steven Austad, chairman of the biology department at the University of Alabama at Birmingham, studies the effects of diet and nutrition on aging using mice. He says researchers used to think that aging was driven by different processes. “Your heart aged, your brain aged, your feet aged,” he said. “But now, we’ve realized, there’s a handful of processes that are involved in aging all parts of your body. And it turns out, one of those processes is inflammation.”

Inflammation naturally increases as we age, but that process is exacerbated by belly fat, which secretes chemicals that cause further inflammation around the body. “If you’re obese, then your system-wide levels of inflammation are higher, particularly when you get older,” said Austad.

That’s one reason scientists think men and women who are obese are more likely to develop dementia, Alzheimer’s disease and certain cancers as they age.

Bob Parker, a Birmingham area resident, says his own weight is starting to catch up with him. As a realtor and Democratic party activist, he often attends meetings at restaurants and says all those nights dining out make it hard to eat well. Now, at age 60, he’s being treated for diabetes, high blood pressure, high cholesterol and sleep apnea. He’s lost 90 pounds—twice—and gained it back. “It’s taken some energy away, for sure,” Parker said of his weight. “I like to do things out in the yard and I just can’t work on them as much. So, that’s pretty galling to be honest.”

Obesity is an expensive disease, especially for aging seniors. One study found that while obese 70-year-olds live as long as healthy weight 70-year-olds, they will spend $39,000 more on health care. “Obese people have higher healthcare costs than non-obese people. This is true virtually throughout life,” said David Allison, director of the Nutrition Obesity Research Center at the University of Alabama at Birmingham. As a person gets into the age when health care spending goes up, “that difference is going to be bigger and bigger and more and more important.”

In part because of disability and poor health, surveys show more obese people are heading into nursing homes at younger ages and staying longer than non-obese residents. Two hours from Birmingham, in the northwest corner of the state, Generations of Red Bay is one of the only nursing homes in the region that is willing to take on the added expense of caring for heavier residents. Patients come from as far away as Texas.

Margaret Hilldouglas arrived here two years ago, at age 47, after she broke her knee. Surgery was considered too risky because of her congestive heart failure, so she languished in a hospital for weeks while a social worker looked for a nursing home that would accept her.

Patients like Hilldouglas require additional staff and costly equipment, including specialized beds, mechanical lifts, larger blood pressure cuffs and longer needles, said Aundrea Fuller, chief operating officer of Generations of Red Bay. “There are two certified nursing assistants for eight to ten residents. And that’s about twice the staffing that you would have for the general population of a skilled nursing facility.” Most of the obese residents that move in here, even the younger ones, will need this type of care for the rest of their lives, Fuller said.

At the University of Alabama at Birmingham’s weight loss clinic, Bernard Rayford, 55, said he wants to avoid that fate. “I’ve always prayed, Lord, before I be a burden, just take me. I saw myself being a burden, and me being a major problem,” Rayford said after a vigorous workout in the clinic’s gym. “The end was for me not to make it. Or for me to end up being in an ambulance. And that’s, that’s the direction I don’t want to be in.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Twenty-nine percent of children taken from their families and placed in foster care failed to receive at least one required medical checkup, the Health and Human Services Department Office of the Inspector General said in a report out today.

Such screenings can help spot health problems, including troubles with vision, hearing, development and mental health issues.

Those exams are particularly important for children in foster care because some have suffered neglect, abuse and other problems that could affect their health.

States set their own requirements, with many mandating that children be screened by medical staff within 24 hours of their placement in foster care – and again periodically under specific schedules that vary with age.

But the report — which looked at medical records in California, Illinois, New York and Texas — found that 12 percent of foster children didn’t get their initial checkup and another 17 percent did not get one or more of the periodic assessments required.

“Missing or late screenings may prevent children’s mental health needs, physical health needs, and developmental needs from being identified and treated,” OIG spokesman Mary M. Kahn said in a written statement.

The reviewed records were from July 2011 to June 2012. The report does not break out the specific failure rate in each state.

Most children in foster care qualify for Medicaid, the state-federal health program for the poor. In fiscal year 2011, Medicaid paid more than $5.3 billion for care provided to children in foster care.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.