Diabetes in Appalachia: “Just give me a pill”

Wednesday, Aug 8, 2012 07:45 AM EDT


In Appalachia, fighting diabetes means battling a culture where even vegetables tend to be covered in bacon fat

By This is the first of a three-part series on the challenges of rural health-care in some of the country’s poorest areas. The second and third parts will run Thursday and Friday.

PRESTONBURG, Ky. — Here in the heart of Appalachian coal mining country, where black lung disease and TB used to be major killers of men, a new epidemic is sweeping through the dogwood-dappled hollows that’s even deadlier than coal dust. The new threat is diabetes. Ads for diabetes counseling and testing clinics have replaced supermarkets as a major revenue source in local papers. Billboards urging middle-aged people to get tested appear almost everywhere there’s a straight stretch of highway.

Nationwide, diabetes affects 15 percent of all Americans; more than a quarter of all people over 65 are diabetic, while half are borderline. But in Kentucky and across the broad Appalachian region, a third of the population is believed to be diabetic, and health workers here believe that most diabetics don’t know it. Gilbert Friedell, who spent his life as a nationally known cancer specialist before founding a statewide health reform committee in Kentucky, however, rejects the conventional wisdom that diabetes prevention and care is a “health” problem.

“We used to say with cancer control in eastern Kentucky that if we were to apply what we now know about cancer, we could cut mortality by half in 10 to 15 years. The same thing is true with diabetes. We know what we have to do to prevent Type II diabetes and how to maintain a reasonable level of personal performance. We know these things. But, if we’re so smart, how come we haven’t fixed the diabetes problem? The answer is we’re still relying on individual approaches where it really requires community action and support.”

That insight led Friedell and the 25-member citizens committee that bears his name deep into the hollows of Kentucky, where strip miners have bulldozed off the tops of the mountains, and where earlier this year, a fierce tornado laid waste to thick forests of trees, blocked roadways and shredded the walls and roofs of gas stations, barns and mobile homes. That’s where the Friedell Citizens Committee launched the Tri-County Diabetes Partnership, drawing together an alliance of doctors, nurses, dietitians, teachers, church people, local health departments and even USDA farm extension agents.

Just above a branch of the Big Sandy River, Lora Hamilton coordinates the Floyd County diabetes program. She guesses that 15,000 of the county’s 45,000 people are diabetic. A few weeks ago she went to the Stumbo elementary school to talk about diabetes to the eighth graders. “The first question I asked was, how many of you have diabetes in your family. Ninety percent raised their hands. They knew there was diabetes in their families.”

Hamilton wasn’t surprised. With estimates that 50 percent of the mountain population will be diabetic in a quarter-century if current trends continue, she says most people are resigned — and believe there’s nothing they can do. “They tell me, ‘I’ve got diabetes or I’m going to get it. I’m just gonna have to live with it. My granddad lost a leg. My grandmother was on dialysis.’ And what I say is, ‘Well, you know you can keep that from happening by taking care of yourself.’”

Next door in neighboring Magoffin County, the USDA county home agent Brooke Jenkins-Howard provides family counseling.

“We have so many people who are diabetic. They go to the doctor and get the diagnosis and then they come to me for the practical side of things. They want to know what they can eat. They want recipes. We [in the Extension Service] have our roots in food, and people know us for that. A lot of times when you’re in the community and you have a reputation for doing these things for people you’re maybe easier to talk to than those medical folks who might be intimidating.”

Jenkins tells the story of a man who came to see her after having visited the county dietitian. The dietitian outlined appropriate food types he should eat, measured by grams of sugar and other carbohydrates and what each day’s total calorie count should be. “He took it home to his wife,” Jenkins-Howard said, “but she didn’t know how to put that information together into meal plans.” Part of the problem, as food anthropologists have long noted, is that changing diets is one of the hardest behavioral adjustments for any traditional population. More pointed is a misunderstanding of what it means to be diabetic.

“A common misperception people here have is, ‘I have diabetes; I can’t have sugar.’ That’s all they focus on. We try to concentrate on carbohydrates in the context of your entire meal plan. Breads are a big thing. Sweets are big. And people still want to fry food.”

“Fried foods. Absolutely! They want that bad!” Bertie Salyers broke in. Salyers recently retired as the Magoffin County health director in order to attend to health problems, including diabetes, in her own family.

Fried beans. Fried peas. Fried corn. “Killed” lettuce and onions in which hot bacon fat is drizzled over leaf lettuce and other greens. These are staples throughout the American South — and especially in the Appalachian region.

An equal barrier to controlling diabetes, Salyers says, is a deep-seated fatalism about both health and poverty.  “They come in and say, ‘It runs in the family. I’ve known I’m going to get it. Just give me a pill.’”

Recently Jenkins and the farm extension office initiated a weekly class on the local cable television network aimed both at diet and self-examination for diabetic symptoms. “We talk about food and diet habits. We can send out written materials to go with the lessons related to diet. We talk about screening for A1c [hemoglobin blood] levels, making your own foot exams [for neuropathy] and eye care [for signs of retinitis].” The object is to encourage diabetics or borderline diabetics to look for signs of the problems that can lead to amputations and blindness; the cable-TV lessons reach about 6,000 people, or half the population of the county.

And that’s good, says former health director Bertie Salyers, except for one additional problem: “So many people do not have access to that local channel. There’s a section of our county that has totally no access, and there are different spots that have no access.” Needless to say, she adds, almost no one in the south end of the county has access to high-speed Internet to take advantage of emerging “health home” monitoring online.

That same barrier plagues rural residents throughout Appalachia — and indeed in much of rural America — as does lack of high-speed Internet and home-diagnosis and monitoring kits for a variety of chronic diseases. But, says Salyers, the blanket of pessimism concerning diabetes and all the complications that go with it has also kept the majority from taking advantage of the screening and counseling programs that do exist.

“The resources are here, but a very small percentage of the people take advantage of [the screening and the classes],” she said at a recent gathering of health nurses and diabetes counselors at the Hope clinic in Salyersville.

Angie Conley, a nurse and diabetic counselor at Hope, offers free classes to talk about diabetes prevention and self-management, but she says few people come, even though they know how prevalent the disease is in their families. “They’re open to anybody,” she said, shrugging her shoulders. “It’s in the newspapers. It’s on the radio. But they don’t come,” Conley says.

The reason, Conley believes, is the general attitude toward pills and illness. “You’ve got to get them at the [clinic] door,” she continued. “If you don’t, they’re not going to come back for the classes. We’ve learned that.  You sit ‘em down and talk to them about diabetes and then they listen.”

One part of the reason, she and Salyers believe, is the cost. Though the Hope clinic is a FQHC (Federally Qualified Health Center), where a visit only costs $25, that’s a lot of money for most of the clinic’s clients, even if the clinic foots the bill for lab work that can cost thousands of dollars. Drugs for pre-diabetic or borderline patients who aren’t covered by Medicaid or Medicare can run another $75 to $100. Put those bills together with $4 a gallon gasoline to drive back over the ridges into town, and it’s more than they can afford.

“Our people,” she says, “have a disconnect between cause and effect, what the consequences are of what they do. Many people have been in poverty so long they’ve never practiced delayed gratification. It’s like I want it now — whether it’s a piece of pie or a new television. It doesn’t matter if I have to pay extra (on a credit card). It’s a cultural kind of thing. Any good results [from waiting] are so far out there they don’t matter. We’re so present-oriented that’s too hard to see.”

Nonetheless, nurse Kathry Hembry does see incremental progress among some patients.

“The number of people who come in [to the clinic] now versus 15 years ago is a whole lot better — the people who come in to get their eyes checked. Take the number of people in our community that’ve lost their legs due to diabetes. Ten years ago I could list you five people I knew personally; I can’t think of one right now. We are making progress; it’s just that we’re not making enough progress.”

Back to the east over the big mountain ridge in Floyd County, diabetes educator Cheryl Younce is running through her standard diet class for people newly diagnosed with the disease. After an hour and a half of rundowns on carb and calorie counting — all of it aimed at illustrating how people can control diabetes — the four clients who had showed up began to talk.

Maxine R., whose family was full of diabetics, thought she was healthy until last year, just after she turned 61. “The minute they told me I saw my mom with the needles stuck in her.” And then she went on, “I had a brother-in-law that had his legs amputated. He was sitting at the table one day eating a whole lemon pie. I remember he said, ‘Oh, my blood sugar is 900′ (normal is between 70 and 100 units). Then they amputated his legs, and even so gangrene set in. Then he died. Yesterday my sister-in-law collapsed even though she was on insulin. They took her to a hospital in Lexington and told her she had to go on dialysis. She weighs 400 pounds.”

Debbie G. has known she’s been diabetic for more than 10 years. “The last five years,” she said, “my job was real stressful and the way I’d deal with it was to eat. And the thing is I can’t remember to take my medicine. I get distracted, but when you get past 60, you start to realize you could die.”

David B., who’s 39, weighed 300 pounds when he went to his doctor last year unable to sleep. He always felt thirsty and found himself going to the bathroom every hour or two. “I went to my doctor and he lectured me like I hadn’t been lectured since I was 10 years old.” In six months he lost 80 pounds, but despite that he’s still diabetic, taking oral medicine and wondering if he can drive the disease back.

Tim D., who’s “in his early 50s,” has had diabetes for 14 years and “never paid attention to sugar. One day the air conditioning went out and I was drinking two quarts of juice a day — thirsty all the time. I didn’t pay attention to my meds and now I’m a full diabetic and have had 10 [arterial] stents inserted.”

Younce, the dietitian, acknowledges that far more diabetic patients could have shown up for her after-work class, but she says the public response in the Tri-County area has clearly improved. With as many as 22,000 residents either already diagnosed or borderline diabetics, and with advertisements for diabetic screening and treatment plastered everywhere, the epidemic is no longer hidden.

It’s still far from the vision Gilbert Friedell and his citizen corps hope for, but little by little, he and Bertie Salyers and the others want to believe they’ve begun to make a difference.

On the surface, argues Friedell, it’s all about nutrition, exercise and cutting overeating. “If you lose 7-8 percent of your weight and exercise strenuously 150 minutes a week, you can bring diabetes under control.” But to get there, he insists, requires real community action. “It can’t be top-down lecturing. The whole community has to be involved to bring about the difference in each individual.

“What we need is a comprehensive, coordinated health system in this country, which so far we do not have.”

Partial support for this story provided by the Henry J. Kaiser Family Foundation.


Healthcare in Appalachia:Dying for a Ride

Salon Series

No matter what changes we make to healthcare, in rural America, simply getting to the doctor is a big problem


This is the second in a three-part series on rural health-care challenges. Part one, on diabetes in Appalachia, can be read here. Part three will run Friday.

LOUISVILLE, Ky. — Fausta Luchini’s client was obese and suffered from hypertension. “David,” a middle-aged man, came from a farming family but wanted to make it on his own. And the clinical psychologist is still frustrated by the way the medical system failed him. All for the want of a ride to the clinic.

“David really wanted to work. He didn’t want to spend all his time in the rehab program or on [his family’s] farm, either,” she says. “But he couldn’t get a job because he didn’t have a car — or a driver’s license. Then he got a job at a fast-food restaurant. For a while he was coming into our center, [picked up by] Medicaid, and then he would leave around 10:30 in the morning. He was going over [to the restaurant] for the lunch shift and then coming back in time for a ride back home — which was resourceful.”

And it violated Medicaid rules.

Mental patients can only use Medicaid-funded transportation to come to a treatment center. When the taxis that held Medicaid contracts found out, Luchini said, they blew the whistle — which gets to the core of a major problem for rural patients who count on Medicaid. Behavioral rehabilitation formally aims to reinsert patients into family or community life. But clinicians who work in rural America say the absence of public transportation makes getting back into a normal community almost impossible.

Most of the Seven Counties clients live in rural towns and villages east and south of Louisville. Nearly all are poor and, says Seven Counties executive director Anthony Zipple, suffer from multiple illnesses that the Medicaid system doesn’t address. And too many of them can’t get to clinics on their own.

“These folks are at far higher risk than the general population for chronic, expensive, life-threatening medical problems,” he said. “The way we have [medical care] structured in the United States, and particularly in Kentucky, doesn’t make a lot of sense.” The central dilemma, say mental health specialists, is the categorization of care into separate compartments — and they say it’s not at all clear that even the reforms proposed under Obamacare address those divisions.

For example, a key part of the ongoing healthcare reform efforts requires patients to declare a “medical home,” much as it does in most European healthcare systems, in order to control costs and coordinate care through an “accountable care organization.” Zipple argues that the pieces of the system are not linked together in a way that makes sense. “The divide between behavioral health and the rest of medicine is substantial,” and that divide leaves his clients worse off than other poor people.

Medical care, public or private, he and his staff say, separates physical illness from medical treatment — not only in the way Medicaid and private insurance pay for care, but also with the research models governing pharmacological research into drug efficacy and side effects. “A lot of the medications we use, particularly the anti-psychotics, have side effects that induce all kinds of metabolic problems. It’s well-known that people on these kinds of drugs are at higher risk for weight gain, diabetes and increased cholesterol levels — all of which result in shorter life expectancy.”

Three recent morbidity and mortality studies in Maine, Massachusetts and Ohio showed variously 50 to 300 percent higher death rates for patients diagnosed with mental/behavioral problems compared to the same age groups in the general population.

“People with serious mental illness in this country die 25 years earlier than the rest of the population,” Zipple says. Roughly two-thirds of those conditions are generally preventable through a combination of dietary control, individualized medication and physical activity. And, Zipple says, life expectancy among mental patients has continued to decline as treatments have grown more expensive. “Life expectancy for people with serious mental illness has actually gotten shorter over the last decade.”

Much of that has to do with buses and taxis.

“Transportation is the biggest thing,” says psychologist Laura Escobar-Ratliff. Escobar-Ratliff works with the Seven Counties group in the rolling farmland of Shelby County, 40 minutes east of Louisville. Shelby County has no bus or taxi service to take people shopping, to fill prescriptions or to work, she says. Medicaid-reimbursed vans can pick up patients to come to her office — but only for rehabilitation treatment programs.

“But,” she adds, “there are caveats. If there’s a car registered to your address, you can’t use the service — even if the car doesn’t run.” Yes, she admits, patients can get written waivers from the Medicaid authorities in Frankfort, the Kentucky state capital, but only if the client pays a state-certified mechanic to fill out a form, and often the clients can’t afford the cost. If there is a car that the wife (or husband) has to use to go to work, a waiver can also be granted through formal application, but, says Luchini, “They don’t want to do that because they don’t want the boss to know her husband comes to Seven Counties [for mental health care].”

“And,” adds Escobar-Ratliff, “it will have to be repeated every year … so she has to go back to her boss to say that her husband’s [mental)[ condition isn’t a temporary thing — it’s chronic.”

“These are real barriers,” says Luchini. “But then if you get the [Medicaid] transportation, you may get picked up late, so you miss the appointment, and when they get you here we’re seeing somebody else — and you have to wait ’til the next time.”

Often, they said, figuring out transportation leaves mentally disturbed or retarded clients so lost or confused that they quit coming to Seven Counties — even though they believe that many, even a majority of their clients, could reenter their communities if Medicaid and state rules were redesigned. Often they say they are told that financial constraints don’t permit such changes. But Michael Ringswald, a Louisville banker who sits on the Seven Counties board of directors, insists that more flexible policies would actually save Kentucky’s Medicaid program money.

Ringswald cites a new report from a watchdog group, Kentucky Voices for Health, showing that the state spends nearly twice as much of its Medicaid money on institutional — or nursing home — facilities as it does on independent living support, exceeded only by Michigan, Alabama and Mississippi. Another report from AARP scored the state 46th in the nation in the quality of its long-term care. The same report estimated that more than 1,400 nursing home residents could be supported far more cheaply if the state and federal Medicaid systems redirected their policies and programs toward independent living for clients.

But the overwhelming majority of institutionalized behavioral care clients do not go into nursing homes. Instead they are sent to so-called Personal Care Homes, which are often abandoned hospitals or motels that, in Ringswald’s view, are simply “warehousing” institutions that take mentally ill people directly from the state’s psychiatric hospital, feed them, provide bathing facilities and administer anti-psychotic drugs — at a cost of $1,158 per month to the state.

Redirecting Medicaid behavioral care toward job-holding and independent living, he maintains, not only is better for the clients, “it drops the costs dramatically. Once you start warehousing them in personal care institutions, you’re always going to have to warehouse them.”

Partial support for this story provided by the Henry J. Kaiser Family Foundation.


Frank Browning reported for nearly 30 years for NPR on sex, science and farming. He is the author of, among other books, “A Queer Geography” and “Apples.” More Frank Browning.



Health reform may expose immigrant status of millions


9:29am EDT

By Salimah Ebrahim

WASHINGTON (Reuters) – As she was ushered into surgery eight years ago, Paula was confident that doctors at Washington’s Howard University Hospital would find the cancer that had been growing in her right breast for months. She was less certain about where she would wake up the next day.

“I felt scared because of the stories in other states … It was always in the back of my mind that a doctor, or an immigration officer dressed as a doctor, could take me,” said Paula, 60, of the fear that she would be exposed as an undocumented immigrant and deported.

Still cancer-free, Paula, who asked to have her last name withheld, waits in the tiny chapel of La Clinica Del Pueblo, a community health clinic in Washington, DC, where she receives routine care.

She and other illegal immigrants worry that their ability to access healthcare at facilities like La Clinica will become even more risky once President Barack Obama’s healthcare law takes effect. The reform requires all U.S. citizens and permanent residents to obtain health insurance, either through the government-run Medicaid program for the poor or by purchasing private insurance via state exchanges starting in 2014.

It also bars undocumented immigrants from participating. As more low-income citizens receive insurance, the fear is that many of the estimated 12 million undocumented immigrants will be easier to identify just because they lack coverage.

“It’s my 3 a.m. nightmare,” said Alicia Wilson, La Clinica’s executive director. “While we do not collect information about the immigration status of our patients, the fact that they will be uninsured could be taken as ‘code’ for also being undocumented.”

Paula is one of thousands of undocumented immigrants who benefit from the DC Health Care Alliance, one of the most generous taxpayer-funded health plans in the country for patients regardless of income or immigration status. Looking out at La Clinica’s crowded waiting room, she firmly clasps the card that gives her membership in the program.

“This is the card that opens a lot of doors … This clinic has protected us and it is helping us to get the help we need regardless of the risks,” said Paula, who entered the United States from Mexico on foot nearly 10 years ago.

In recent years, funding for both the clinic and the healthcare alliance has come under fire from conservative groups who oppose using tax dollars to pay for the care of illegal immigrants, as local governments already struggle with budget cuts in a weak economy.

Wilson and other advocates see that opposition gaining momentum once the healthcare law takes effect, particularly in states where anti-immigration sentiment runs high.


The 4 million U.S.-born children of such immigrants are also vulnerable when policies on immigration and healthcare collide.

According to the Urban Institute, nearly 1 in 10 U.S. families with children are of “mixed status,” with at least one parent who is undocumented and one child who is a citizen.

These children are likely to be eligible for insurance, including the government-sponsored Children’s Health Insurance Program (CHIP). But many remain out of the system because of their parents’ dread that the undocumented spouse will be identified and deported, since U.S. immigration authorities, part of the Department of Homeland Security, must verify a child’s residency status.

“You’ve got a community that’s caught in the nexus, the crossroads of two different laws,” said Jennifer Ng’andu, a lawyer and deputy health policy director at the National Council of La Raza – a national Latino civil rights and advocacy group.

According to Ng’andu, 8 percent of children from families where both parents are U.S. citizens don’t have insurance, compared with 25 percent in households where children live with at least one undocumented parent.

Robert Rector, a senior researcher at the conservative Heritage Foundation, said that making it easier for such families will set an unwelcome precedent that the country cannot afford, even if their children were born within its borders.

“These kids are very expensive. They are getting on average $10,000 a year in public education and welfare and other services that their parents are really going to never earn enough to pay for,” Rector said. “If you say this child was born in the U.S. and therefore gets to stay and we’re not going to do anything about it, you’re kind of creating an unlimited open avenue for future illegal immigration.”


Elisabeth, 26, an undocumented immigrant from Mexico City, is a single mother with three children, two of them U.S. citizens. Her worry that government authorities might split up her family is present each time she takes them to the doctor.

“I have a fear of hospitals, questions about my status and am always worried that the police will intervene, that my children will be taken away from me,” she said. “I live in the fear with every document I fill out, that it all goes to immigration.”

Elisabeth, who also asked for her full name to be withheld, said her own health has been compromised as a result. For two years she suffered in silence as a victim of domestic violence, enduring repeated beatings by her then partner and having her ribs broken while pregnant with her youngest child. The couple has since separated.

The healthcare she has received – such as giving birth to her children in the hospital – has been organized by Mary’s Center, another community clinic in the Washington area, and through the DC Health Care Alliance.

While immigrants do have legal protections that allow them to receive care from hospitals and other providers without endangering their status, even the slightest chance of exposure can be terrifying. In the first half of 2011, 46,486 who claimed to have at least one U.S. citizen child were deported, U.S. Immigration and Customs reported.


Ezekiel Emmanuel, a senior Obama healthcare advisor, acknowledges the concern that the law may expose immigrants.

“We were all aware of it,” he says. “Is that a negative tradeoff for getting universal coverage? Yes … It’s a visible consequence that we couldn’t do anything about given the politics of the situation.”

As the political debate over healthcare becomes increasingly focused on cutting costs, experts expect more scrutiny on the fate of undocumented immigrants.

“We’re in a time of fiscal austerity where you have 8 percent unemployment among predominantly legal citizens and yet you continue to have a system that openly invites illegal immigrants to come and stay,” says the Heritage Foundation’s Rector. “The first solution to the healthcare costs is to enforce the law (barring employment to illegal immigrants).”

Some health policy experts disagree, saying U.S. citizens would benefit even more if the health law included undocumented immigrants within its requirements.

Even when immigrants have insurance, their health costs amount to only half or two-thirds of the expenditures seen with U.S.-born citizens, according to a 2009 study by Leighton Ku, director of the Center for Health Policy Research at George Washington University.

“Many people think immigrants are overusing and overtaking emergency rooms, yet all the data shows they use emergency rooms less than citizens. They use everything less than citizens,” he said.

Broadening the pool of insured people to include those who use less health care means a larger population can help shoulder the costs of sicker Americans. State health insurance exchanges, which will allow individuals to buy subsidized health plans starting in 2014, exclude illegal immigrants, leaving out millions of young, healthy people who could otherwise spread the risk.

Health insurers are seeking a way around the problem, according to a senior official at one of the largest U.S. insurance companies.

“Here you’ve got a law which says everybody has to have coverage, but you have classes of people without access to coverage,” the official told Reuters on condition of anonymity. “Washington makes it very difficult for us to do the right thing.

“Obviously, we’re capitalistic and we want to make money, but at the same time we want the health system to work better, and the health system works better when people have access to coverage.”

An estimated 600,000 undocumented workers have private insurance plans through employer-sponsored programs. But they may lose out if their employers can’t manage those same plans within the state health insurance exchanges, or if premiums rise. The Restaurant Opportunities Center of Los Angeles, which provides affordable health coverage to 75,000 undocumented restaurant workers, is trying to figure that out.

“It’s not merely that they are not eligible for the subsidies, but that they cannot even get a policy from the health insurance exchanges even if they wanted to pay the full cost themselves,” Ku said. “If you’re an undocumented alien, we still let you go to the store and buy cereal or go to a car dealer and buy a car.”

(Editing by Michele Gershberg and Prudence Crowther)

States May Drop Medicaid Expansion, CMS Says


Cheryl Clark, for HealthLeaders Media , August 9, 2012

The federal announcement this week that states may choose to expand their Medicaid programs to 138% of the federal poverty level for some period of time, and then later drop out, could provoke some states deeply opposed or on the fence to reconsider.

But the news doesn’t answer many of the big questions that remain, says Matt Salo, executive director of the National Association of Medicaid Directors.

Earlier this week, Cindy Mann, director of the Centers for Medicare & Medicaid Services’ Center for Medicaid and the Children’s Health Insurance Program (CHIP) spoke in Chicago at the National Conference of State Legislatures in an effort to clarify the issue.

“A state can decide when to come in, if to come in and also, if a state does adopt the expansion and determines at a later time, for whatever reason, that it does not want to maintain the expansion, it could also decide, because it’s a voluntary program, to drop the expansion,” Mann told the American Hospital Association, which included the statement in a news briefing late Tuesday.

“The ability to opt out is certainly better than no option,” Salo says, adding that “some states have been reluctant because “they had felt trapped by the permanency of it. But I don’t think that in and of itself is enough to say that states will feel better about adopting the Medicaid expansion.”

Too many other questions about how the Medicaid expansion would work need to be answered soon, says Salo, whose organization last month sent a list of 47 questions about the protocols for the expansion programs to CMS. 

Questions about the Medicaid expansion provisions of the Affordable Care Act emerged June 28 after the U.S. Supreme Court ruled on a provision of the law that said if states did not expand their Medicaid programs to 138% of the federal poverty level, the point at which subsidies for the federal exchanges would kick in, would not lose all their federal Medicaid funding match, which ranges around 50%.  The court declared that invalid, saying that states could opt out of the expansion to 138% without losing all their funding.

Some 30 states, including many that challenged the constitutionality of the Patient Protection and Affordable Care Act, such as Texas and Florida, have said they don’t intend to expand, while others are await further clarifications before announcing their decisions.

The issue is a hot button one for hospitals, whose leaders worry that in states that don’t expand their Medicaid programs, millions of patients will remain uninsured, as if the PPACA had never existed. That would require hospitals to shoulder the costs of care when patients need it emergently.

Meanwhile, these hospitals are shouldering billions in reimbursement cuts and reduction in disproportionate share funds that they agreed to in anticipation that all states would expand their Medicaid programs.

Joy Wilson, health policy director at the National Conference of State Legislatures, the group holding the meeting where Mann spoke, said lawmakers in attendance seemed interested in the new option. “There was some comfort in that if they were if their states decided to do the expansion, and for whatever reason it didn’t work out fiscally, they would have an option to reverse that course,” she says. “There was some feeling that was a good thing.”

Wilson adds that many states “just don’t know what they’re going to do yet because they don’t have all their facts in front of them.”

One particular sticking point remains in what Salo and others call “the moving parts.”

States may now have a patchwork of programs to deal with the welfare or healthcare needs of the uninsured, provided they have no other source of coverage.  If a state expands its Medicaid program, the need for those patchwork programs—providing food, medicines, housing—would go away,  or at least be greatly reduced, and much harder to start up again. It could mean saying no to other sources of federal or state or philanthropic funds that the states could never get back.

Compounding the problem is that while federal funds pledge to pay for 100% of the Medicaid expansion for the first three years, after that the funding begins to drop to 90%, forcing states to pick up the tab for a large number of patients it didn’t have to pay for before.

Salo says that while he’s glad CMS has clarified this issue, there are dozens of remaining questions about how the expansion programs will work.  “The question that remains unanswered, which is still the most important one, is whether states can expand to a federal poverty level to a partial level below 138%?” he asks.

Take a hypothetical state that covers citizens with Medicaid up to an income level of 70% of the federal poverty level.

“If a state says no, we’re not expanding, the exchange subsidies will kick in at 100% of the federal poverty level, but there will still be a gap for people who earn incomes below 100%, and they will have nothing,” he says. In this example, anyone earning between 71% and 99% of the federal poverty level will have no coverage and will not be eligible for health insurance exchange subsidies.

Cheryl Clark is a senior editor and California correspondent for HealthLeaders Media Online.