When Claudia, a mother of seven who lives in a Dallas suburb, feels sick, she doesn’t bother trying to make a doctor’s appointment. Without health insurance, even a simple consultation would cost more than a day’s pay.
“I just take something over the counter or wait till I can't take it anymore,” she told me.
One such time occurred in 2002, when she had a complication after a gallbladder surgery.
“I was home for six days when I started to be in pain again,” she said. “I had just been in the hospital, so I was holding it off because I was worried that they'd send me another thousand-dollar bill.”
After several days of laying on the couch in agony, she gave up hoping that it would go away on its own. “I went to my husband crying, saying it was too painful. He agreed to take me,” she said.
Back at the hospital, doctors said the initial operation had punctured one of her bile ducts, and the bitter fluid was now leaking into her body. “The doctor told me that if I had waited longer, I would have been dead,” she said.
Claudia works in a warehouse for up to 11 hours a day, and though she’s occasionally wracked by aches and pains, she hasn’t gotten a physical in four years. Her children are healthy, but she admits that no one in the family has been to the dentist in a while. Her 19-year-old daughter pays for her own contact lenses with earnings from her job at McDonalds: Two paychecks for every optometrist visit.
Any money that otherwise might be spent on a costly out-of-pocket appointment is saved up instead for yearly trips to El Salvador, where Claudia’s husband moved with four of their children after he was deported eight years ago. Claudia has been managing like this since 2007, the last time she had a permanent job that provided health insurance.
When Claudia first learned about the Affordable Care Act, she was hopeful that the law would portend what its name implies.
But a few months ago, she arrived at a community meeting at the Irving public library to find that because she makes less than the federal poverty level, she does not qualify for the federal government’s subsidies to buy insurance. (The subsidies to buy insurance on the newly created exchanges only go to people who make 100 percent of the federal poverty level or more.) Without the subsidy, the family’s premium for a mid-level “silver” health plan on the exchange would be roughly $5,000 per year.
If she lived in, say, California or Kentucky, Claudia could simply enroll in Medicaid. The Affordable Care Act provided for states to expand the program to include low-income adults — a demographic that in most states has been traditionally ineligible for Medicaid, which was designed for children and pregnant women.
But in its June 2012 Obamacare decision, the Supreme Court ruled that states aren’t obligated to expand Medicaid, and Texas is currently one of the 25 states that have chosen not to expand the program. In April, Texas Governor Rick Perry, a Republican, called Medicaid expansion “a misguided, and ultimately doomed, attempt to mask the shortcomings of Obamacare” and has resolutely refused to consider it.
“I found out that Rick Perry had denied Medicaid,” Claudia said. “And I thought, ‘What's going to happen with me now?’”
It’s a question many Texans are asking themselves as vague newscasts about coverage deadlines and website fixes have stirred increasing numbers to learn more about Obamacare—with some finding bad news about their own prospects under the law. Texas has the highest rate of uninsured people in the nation, at 25 percent. In all, 1,046,000 people will fall into the state’s so-called “Medicaid gap”: the expanse between the minimum salary necessary to qualify for a federal subsidy to purchase insurance on the new Marketplace, or about $11,500 a year, and the maximum wage to qualify for Medicaid, which in Texas is about $3,500 for a family of four. At a time when millions across the country are gaining health insurance, it’s estimated that Texas’ Medicaid gap will swallow up 91 percent of the poor, uninsured adults in the state.
Of all the people who fall into this coverage gap nationwide, more than a fifth reside in Texas — in part because it, like many other southern states, also happens to have super-stringent Medicaid requirements. Able-bodied adults under the age of 65 without children don’t qualify for the program at all unless they are pregnant.
At free clinics and enrollment events in Dallas, “I don’t make enough to qualify for the subsidy” was a common ironic refrain, though most people I spoke with seemed to accept it as just another bureaucratic quirk.
“I thought with Obamacare I’d get better quality and services,” one woman told me. “I guess I don’t qualify.”
Not everyone faced the state’s decision with resignation, though. Rachel Pearson, an MD/PhD student at the University of Texas Medical Branch, sees low-income patients at a free clinic in Galveston.
“It felt like a slap in the face,” she told me.
“As a medical student, you’re constantly confronted with the bodies and lives of working-class Texans. You are called upon to sit and listen to somebody’s story, and you look in their mouth and their teeth are messed up, and you listen to their heart and there’s a murmur, and you’re telling them there’s a treatment for this, but the state has decided they should not be able to get that treatment,” she said. “These people deserve the fruits of the accumulated thousands of years of effort that have gone into making modern medicine.”
Without Medicaid or another form of insurance, getting to see any kind of doctor can be a struggle. But in Texas and other states that don’t expand the program, arguably the biggest challenge for the uninsured is — and will continue to be — accessing specialty care.
Texas’ network of community and charity clinics are relatively capable of providing in-a-pinch primary care to most of the state’s uninsured. But those in the Medicaid gap have few reliable options when it comes to surgeries, cancer treatments, and other higher-level care. The kind of treatment, in other words, “that most folks will never need. But when you do need it, there's no substitute for it,” said Anne Dunkelberg, associate director of the Center for Public Policy Priorities, a left-leaning Austin think-tank.
A frequent argument against Medicaid expansion here is that too few specialists participate in the program because of its low physician reimbursement rate. But a look at the current healthcare safety net in Texas reveals that, for all its warts, Medicaid still appears to be a better option, in terms of health access, than the status quo. Medicaid may have trouble attracting enough participating specialists, but for uninsured Texans, getting seen by a specialist under the current system requires a near-miracle.
Though the state has a network of indigent-care programs and low-income clinics, it often fails to provide the kind of comprehensive treatment for serious conditions that Medicaid or other private insurance would offer as a matter of course. As a result, thousands of Texans go without medical care until it’s too late, or they live with painful conditions that people with private insurance can easily avoid. And since many other red states have similarly tight Medicaid requirements, high uninsured rates, and anti-entitlement legislatures, Texas serves as an example of what’s to come in other states that don’t expand Medicaid.
“Generally, if patients don’t develop anything serious, we can keep them cranking along until they turn 65,’” Pearson says of the clinic in Galveston where she works. “But if they do develop symptoms of a more serious condition, our hands are very tied.”
Galveston is a skinny island off the state’s southeast coast, and it serves as a popular resort among spring breakers and wealthy retirees. Brightly colored condo buildings sit along its palm-fringed beaches, and a touristy “Pleasure Pier” makes for a lower-rent Santa Monica.
But like in many other parts of the state, its cheery affluence coexists with bleak destitution. The day I drove past the Salvation Army, where dozens of men lingered and smoked on a cement patio, to meet one of its homeless residents at a diner, a gaggle of people in Santa outfits jogged by me as part of some sort of Christmas-themed fun run.
The city has three main sources of employment: the University of Texas Medical Branch, a gleaming hospital complex; the port and petrochemical industry; and the hotel and restaurant business. Many locals lack the skills necessary to find work in the first two categories, said Jason Glenn, a medical historian at UTMB, and instead find themselves slinging margaritas or changing bed sheets at the Hilton. They also find themselves without insurance: One in four people in Galveston isn’t covered by any kind of plan.
The area is home to some of the state’s best teaching hospitals, the state-subsidized UTMB among them. Fifty years ago, UTMB was the provider of last resort for much of the state, attracting broke farmers in need of appendectomies. Citing financial concerns after the destruction wrought by 2008’s Hurricane Ike, UTMB gradually reduced the number of charity-care referrals it accepted, from 65 percent in 2005 to just 9 percent in 2011. More recently, UTMB and other hospitals have complained about the state’s practice of diverting of money earmarked for indigent care away from the hospitals and toward the state general fund, making it even more expensive for them to provide charity care. The Texas Health and Human Services Commission found that of the $37.48 million in reimbursements credited to UTMB in 2012, the $21.82 million federal share went into state coffers.
Galveston County, meanwhile, runs an Indigent Care program that covers the very poor. It has one of the more generous eligibility requirements in the state, covering people who make up to 100 percent of the poverty level (though it will likely cut the income cap down to 35 percent of poverty two years from now). Most of the state’s other indigent care programs only offer care only to people who make up to about $2,400 a year.
But even Galveston’s Indigent Care program can't get its patients treated at UTMB, and the list of local specialists it does have agreements with is short and changes frequently.
Into this picture walked Mark Oswald, a 61-year-old unemployed carpenter who lives at the Galveston Salvation Army. He has tan skin, a neat moustache, and a deep South Texas drawl that’s strained by a pernicious sore throat. He first felt the pain more than a year ago, when he was living in Humble, a small town north of Houston.
“I thought it was from some bad jaw teeth -- some poison from that coming into that gland,” he told me over a breakfast of beans and tortillas.
One day he looked in his mouth with a flashlight and saw “nasty-looking bumps.”
As an adult male with no children, he doesn’t qualify for Medicaid, but he likely would if Texas had expanded the program. With no way to see a doctor about his throat, he instead checked into a nearby emergency room, where a doctor prescribed penicillin.
It didn’t help. Oswald began taking handfuls of Tylenol and Ibuprofen each day.
Eventually, the pain grew so bad that he checked into another ER, where the doctors performed a CT scan and found a tumor at the base of his tongue.
“They gave me a disc and a findings sheet and said to take it to an [ear, nose, and throat doctor], when I got one,” he said.
I asked him what he did when he received the ER bill.
“I looked at the bill, saw the number, looked up to God and said, ‘Help them, Lord, please,’” he said, grinning.
Four months ago, he moved back to Galveston to be nearer to his older brother. Unable to find work, he moved into the Salvation Army, where he shares a room with 13 other men and is prohibited from staying between 7 and 5 each day.
He applied for treatment through Galveston County Indigent Care. It took about two months to get his application approved, he said, but the program promised to connect him with an ENT as soon as they could. A spokeswoman for the county's Indigent Care program told me that applications take between 21 and 23 days, on average, to process.
But the program suffers from a shortage of nearby, contracted specialists who treat rare diseases, said Susan McCammon, the co-director of the Center for Cancers of the Head and Neck at UTMB. Though Galveston has a population of more than 47,000, a specialist list published by the county in May reveals just two otolaryngologists—both in Houston, an hour away. Oswald has no access to transportation.
“The [Indigent Care] providers are far away, they change a lot, and we don’t know who they are,” McCammon said. "Cancer care is so far more expensive than what the county caps out at, so there are whole subspecialties that are not represented.”
The county spokeswoman said the program still does not have an ENT on contract, but is "fairly successful" at finding ENTs to treat indigent patients upon request.
Oswald kept calling the county regularly to check on the status of his appointment with a specialist. “I would say, ‘I’m dying of cancer here. If I don’t get the treatment soon, I’m gonna die.’”
In November, he went to St. Vincent’s, the Galveston free clinic where Pearson works. There, doctors took samples of his tumor and he was officially diagnosed with tongue cancer. That clinic didn’t have oncologists or ENTs on staff, either, but his diagnosis there proved to be the key to getting a specialist appointment. The Indigent Care program finally found an opening with an oncologist on December 31.
The time between when Oswald first described his symptoms at an ER and his first appointment for cancer treatment was about one year. McCammon said that ideally, head and neck cancers should go from diagnosis to treatment in 100 days or less.
“Head and neck cancer has about a 50 percent overall survival rate. Half our patients die, no matter what we do,” McCammon said. “But if they’re not able to get access to care, their cancer goes from curable to incurable.”
After UTMB cut back on charity care, McCammon began practicing palliative medicine, offering symptom management, counseling, and pain control for patients who could no longer get cancer treatment.
“The most vulnerable ones are the ones who make just too much to qualify for the county [Indigent Care program], but not enough to afford health insurance,” she said. “And obviously not enough to self-pay for cancer care, which ranges from $30,000 to $70,000.”
Indigent Care programs, which largely only cover urban areas, represent just one part of the patchwork of the existing backstops for uninsured Texans, a byzantine mishmash of ad-hoc charity care, free clinics, and sliding-scale programs that vary by county and city. Because of their differing eligibility requirements and provider networks, it can be hard for some, like Oswald, to know where to apply or who covers what.
Low-income, primary-care clinics called Federally Qualified Health Centers, for example, serve about a million uninsured Texans at reduced rates, but “even when they’re at peak performance, they can’t meet the total demand from the community,” said Elena Marks, a health-policy researcher at Rice University’s Baker Institute. “Pile on top of that that there are limitations to what they can do — their scope is really primary care only.”
The centers refer more complicated cases on to county hospitals, but the hospitals can’t fit in all of those patients, either, Marks said. And though Medicaid is often derided as an expensive program, much of the charity care in Texas public hospitals goes uncompensated, so hospitals hike fees to make up the difference, and local residents see their property taxes and insurance rates rise.
“Some patients just don’t get taken care of,” said Jose Camacho, executive director of the Texas Association of Community Health Centers. “We [FQHCs] will never be hospitals, we’ll never be rehab facilities, we’ll never have CAT scans. There’s no way that FQHCs can make up for the gaps that exist as a result of not expanding coverage.”
MaGuadalupe Huerta, a single mom who came to a recent ACA enrollment in Dallas, was dismayed to find that she didn’t make enough with her housecleaning job to receive a subsidy to buy insurance on Healthcare.gov. She receives healthcare assistance through a program called Parkland HealthPlus but was hoping to join a more robust plan.
She has been suffering from a broken dental bridge for months, but said it would cost $4,000 to fix, even with Parkland’s help. Through an interpreter, she said she can’t spend the money because she’s saving up to help her son with college.
For more routine ailments, the third of Dallas residents who are uninsured often head to one of the hundred or so free clinics in the area. Open Arms, a faith-based clinic in Arlington, Texas, is situated in a small, beige strip mall in an office with six exam rooms and an “Amazing Grace” sign above the entryway.
The place runs on donations: Nearby hospitals offer up their old equipment, local churches gather cash, Quest Diagnostics donates lab work, and sample medications come through AmeriCares. Patients are so grateful, the staff said, that they often stuff a few bills into a donations shoebox on their way out.
After the daily morning prayer, two retired physicians spend the day seeing about 10 patients each. Return patients can usually get an appointment, Open Arms CEO Fran Martin told me, but there’s almost always a waiting list for new patients. Open Arms doesn’t check the income or insurance status of their patients.
“If they're fibbin’ to us, they're the ones not sleeping,” Martin said.
Many arrive with diabetes, high blood pressure, and other chronic illnesses that have grown worse from neglect.
“I had one patient who was off his hypertension meds for six months because he thought he could do without them,” said James Jacobsen, one of the clinic’s doctors, said. For more complicated problems, the clinic calls around to local specialists who might be willing to take an occasional pro-bono case.
Demand for the clinic’s services likely won’t drop after the Obamacare enrollment deadline in March, Martin said, since so many of their patients will fall in the coverage gap.
In other cities, groups of doctors and specialists come together and agree to “donate” a certain number of procedures to uninsured patients each month.
In Fort Worth, the Tarrant County Medical Society runs one such cooperative, called “Project Access,” in which area specialists perform the procedures and a local nonprofit runs case management. The collective provides specialty treatment to 150 people a month, who usually wait about six to eight weeks until a participating physician has an opening.
The specialists are not reimbursed, but the program charges patients $100 for a procedure. They told me they rarely turn anyone away.
Still, there’s little reliable money for the state’s various Project Access programs. The Dallas version of the program, for example, shut down a year ago after its funding fell through.
There are, of course, a number of arguments against expanding Medicaid. While the federal government would pick up much of the immediate cost of the new enrollees, it sticks states with 10 percent of the tab after 2020. A just-published study found that people use emergency rooms more, not less, once they enroll in Medicaid, somewhat undermining the argument that the expansion would funnel more people toward cheaper primary-care doctors. (Though it’s worth noting that people tend to use all sorts of healthcare more — not just ERs —once they get insured.)
And physicians are indeed reluctant to accept Medicaid: Its lower reimbursement rates mean that more than a third of doctors won’t see new Medicaid patients, a shortage that is especially acute among specialists.
“I think that we have an unhealthy obsession with the uninsured rate in Texas,” John Davidson, a health-policy analyst at the conservative Texas Public Policy Foundation, told the Texas Tribune. “It distracts us from the much more important question of healthcare for the indigent population. Insurance and care are not the same things.”
Martin and others at Open Arms said they aren’t sure whether expanded Medicaid would help patients like theirs, and suggested that there would always be needy people either way.
Others, like Governor Perry and his fellow conservative lawmakers, are simply ideologically opposed to government-administered healthcare.
Brian Swift, with the Tarrant County Medical Society, said Project Access was a shining example of how groups of doctors could organize their own indigent care programs without federal help.
“It's an example of a community coming together to decide what the community needs,” he said. “You don't have to have all this intrusion by the government to make this work.”
Still, it takes a doctor-rich (and literally rich) area like Tarrant County to organize a robust network of highly trained specialists who all agree to dispense free care. Smaller towns in rural Texas would likely have trouble rounding up comparable teams of big-hearted surgeons and radiologists.
What's more, research on Texas’ uninsured population shows that, despite the assortment of available charity care programs, lacking insurance does, in fact, translate to lacking access. According to preliminary estimates from the Agency Healthcare Quality and Research, between 2009 and 2011, insured adults in Texas were nearly twice as likely as uninsured adults to say that they could get specialty care when they needed it.
In 2000, the Access Project (not affiliated with Project Access) found that one-quarter of the state’s uninsured adults were not confident in their ability to get necessary treatment. That was almost twice the percentage of Medicaid recipients who felt the same way, and about four times the number of privately insured people who did.
Similar trends have emerged in other states: No Medicaid and no insurance often means no appointments with endocrinologists, cardiologists, and other non-GPs. In 2004, the California Healthcare Foundation found that, for uninsured patients, getting specialty care was “often” or “almost always” problematic for 16 of 24 different types of specialists. While some uninsured patients were able to see specialists, getting these ad-hoc charity treatments were described as a “difficult, case-by-case effort.” But unlike Texas, California is expanding Medicaid.
Furthermore, initiatives like Project Access don't compensate specialists at all, and Medicaid would — just at a lower rate than private insurance.“In terms of those who are contributing their time, it’s very admirable, but I don’t think it’s a functional alternative [to insurance], given that they’re constantly scrambling to get money for these very expensive procedures,” said Jacqueline L. Angel, a professor who studies health disparities at the University of Texas.
And part of the reason for the state’s Medicaid doctor shortage is that the Texas’ Medicaid provider fees are among the lowest in the country, at just 65 cents for every dollar that Medicare reimburses. Health experts think that boosting the reimbursement rate would entice more doctors to participate in the program.
Studies on Medicaid’s health benefits show mixed results. One Urban Institute paper found that Medicaid provides its beneficiaries with similar access to care as employer-sponsored insurance, except at a lower cost for the individual. For example, patients would spend more than four times as much on out-of-pocket medical expenses if they were uninsured, and three times as much if they had employer insurance, as they do with Medicaid.
Meanwhile, a New England Journal of Medicine study that looked at Oregon residents who won a Medicaid lottery found that getting coverage generated no significant improvements in cholesterol or hypertension in the first two years. It did, however, encourage people to go to the doctor more, raised their rates of diabetes detection and management, lowered rates of depression, and reduced financial strain.
Estimates from researchers at UTMB found that about 9,000 additional Texans will die each year because of the Medicaid gap. A New England Journal of Medicine study found that states that had previously expanded Medicaid saw a 6.1 percent reduction in the death rate among adults younger than 65.
While critics of Medicaid point out the program’s spotty record of saving money or alleviating certain health conditions, its proponents say that many of its shortcomings apply to Medicare and private insurance as well.
“No one who works with the poor or access to healthcare thinks Medicaid is perfect,” Dunkelberg, the Austin healthcare researcher, said. “But our private insurance is really screwed up, too.”
“I don't think there's any viable alternative to Medicaid that's being offered,” she added. “We don't like to admit it, but in Texas we have a ton of people who work and whose families are still in poverty. We have to find a way to either get them a reasonable standard of care, or just say we don't think that's important in society.”
For her part, McCammon also said she comes down “firmly on the side of Medicaid expansion.”
“Perry said that we don’t need Medicaid expansion because we have emergency rooms, but often, these issues are not emergent enough to get it done through an emergency room,” she said. “Those people will die difficult deaths.”
Oswald said he wasn’t familiar with Medicaid. He did want to tell me about one healthcare policy idea he had heard long ago, though.
“I once had a girlfriend who was from Costa Rica, and she said that there, they take your medical right out of your paycheck, so when it comes time to go to the doctor, it doesn’t cost anything,” he said. “I thought that was kind of neat.”
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