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LAREDO, Texas — In mid-May, 20-year-old Anissa Rangel’s gums began to bleed. At first she assumed it was related to her gingivitis, but one morning, she woke up in the bedroom that she shares with three siblings and saw her gray nightshirt stained dark red across the shoulder. A month passed before she told her mother that something was wrong. By then, another symptom was visible: purple bruises on her arms and legs.
It had happened to her twice before, once as an infant and again in eighth grade. “The first time we brought her in [to the hospital], they called the police on us,” recalls her father, Jose Rangel, a disabled truck driver with gout and a heart condition. It was only later that the doctors diagnosed her with idiopathic thrombocytopenic purpura, a platelet deficiency that causes fatigue, bleeding and speckly bruises called petechiae.
During her previous episodes, both acute, Rangel was admitted to a local hospital and subjected to bone-marrow tests. As a baby, she was given an intravenous blast of gamma globulin to revive her platelet count. She maintained her health through steroids, regular checkups and bloodwork, all paid for through public health insurance.
Things were different in May. Rangel, now a student at Texas A&M International University, was no longer eligible for the Children’s Health Insurance Program. She was kicked off Medicaid when she turned 19, though she and her family were as low-income as ever. Texas does not cover poor adults other than new moms or parents raising young children.
Sometimes we don’t get tests done. Anissa needed this, [her father] needed that, and we choose. What is the priority?
As a result, the entire Rangel clan — uninsured except Jose, whose disability-based Medicare recently came through, and oldest daughter, Juanita, who has employer-sponsored coverage — came to rely on the discounted sliding-scale services offered by charitable health clinics. And with a number of chronic illnesses in the family, every month brought tradeoffs. “Sometimes we don’t get tests done,” says Alma Rangel, Anissa’s mother. “Anissa needed this, [her father] needed that, and we choose. What is the priority?”
On July 15, fatigued and with mottled skin, Anissa Rangel visited Dr. Jaime Estrada at Laredo’s Providence Clinic. Estrada, a pediatric hematologist and oncologist based in San Antonio, has driven the 160 miles to Laredo at least once or twice a month for years. He has seen Rangel with and without insurance for much of her life, keeping a close eye on her platelets and red and white blood cell counts.
The bloodwork revealed worryingly low levels of all three. She would need a bone marrow aspiration to test for leukemia and lupus — a procedure that, without insurance, could cost up to $5,000. “So I told her to go to the emergency room in San Antonio,” he said, knowing it couldn’t turn her away. “That was the only option.”
The next morning, accompanied by her mother and sister, Rangel drove straight to the emergency room at San Antonio’s Methodist Children’s Hospital, Estrada’s home base. Although she was technically too old to be treated there, he managed to get her admitted and stabilized with saline and antibiotics. The next day, an infusion of gamma globulin stopped her gums from bleeding and chased the splotchy bruises from her face and body.
The average customer did not understand Texas’ decision [not to expand Medicaid]. People were like, ‘I thought ‘Obamacare’ was going to help me.’
health director, Christus Santa Rosa Health System
Rangel is one of 2 million Texans without health insurance because outgoing Gov. Rick Perry rejected federal Medicaid expansion funds under the Affordable Care Act (ACA). Now she falls into the coverage gap — ineligible for the state’s existing Medicaid plan but too poor to receive a subsidy for a private health plan.
The ACA was originally designed to provide low-income citizens and qualifying immigrants with either public insurance through Medicaid or subsidized commercial insurance, and the Lone Star State was set to receive billions in federal dollars toward this end. But after a 2012 Supreme Court decision allowing states to opt out of Medicaid expansion, Texas and about half the other states refused the funding.
In Texas — which has 6 million uninsured residents, the most of all the states — the consequences are particularly dire. Patients like Rangel are left to seek treatment at emergency rooms and free clinics, pushing families, hospitals and state and local governments into debt. November’s gubernatorial election could make a difference: Democratic candidate Wendy Davis has pledged to expand Medicaid, but she trails Republican Greg Abbott, the state’s attorney general and an ACA opponent, in polls.
The ACA, aka “Obamacare,” has a bad reputation among many Texans, including the law’s intended beneficiaries. “Things were better before,” Jose Rangel says. He believes that prior to the ACA, health providers were more attuned to those lacking coverage, whereas they now expect people to have insurance.
Meanwhile, those who tried to buy a plan through the federal health insurance exchange only to find themselves in the coverage gap felt wronged by the system, says Andrea Guajardo, director of community health for the Christus Santa Rosa Health System. “The average customer did not understand Texas’ decision [not to expand Medicaid]. People were like, ‘I thought “Obamacare” was going to help me.’”
As originally conceived, it would have helped millions more. The ACA allocated federal funds to enlarge every state’s Medicaid pool and lift the eligibility caps to 138 percent of the federal poverty level: In Texas a parent with two kids is currently limited at 19 percent, or $3,600 in annual income.
It would have cost the state nothing to make this expansion through 2017 and very little thereafter — less than one state dollar for every nine federal. (Medicaid is a jointly funded program.) Those making 100 to 400 percent of the poverty level qualify for help in the form of a subsidy to buy private health insurance on the federal exchange, a regulated marketplace.
Terry Holloway, 52, whose construction career was cut short by an injury, has lived without health insurance for many years. On a scorching July morning, he visited San Antonio’s Barrio Family Health Center with his wife, Leslie, because he “ran out of insulin pens. I couldn’t afford it,” he says, holding a paper sack containing two free doses. Had Texas chosen to expand Medicaid, he would have been covered; as it stands, he relies on charity care to manage his diabetes and seek treatment for his kidneys, heart, right foot and back.
The ACA was intended to have built-in financing and incentives, with more federal money for insurance and less for uncompensated care, but the Supreme Court decision has thrown the law off balance. By choosing not to expand Medicaid, Texas has ensured an eventual reduction in federal support for safety net hospitals serving uninsured patients — Disproportionate Share Hospitals (DSH) payments — with no commensurate increase in public health insurance reimbursement.
“One of the ways they fund the Medicaid expansion is, as Medicaid eligibility ramps up, it decreases that Disproportionate Share Hospitals fund,” explains Leo Cuello with the National Health Law Program. This became a huge problem after the Supreme Court case, he says. “No one thought that these two things could happen separately.”
Although DSH (pronounced “dish”) funds have been under threat for years, they remain an important budgetary supplement for hospitals that the poor rely on. Texas received more than $1 billion in federal DSH payments in fiscal year 2014. Last November, under pressure from hospital associations in states refusing to expand Medicaid, Congress voted to delay “Obamacare” cuts to DSH until 2016, but a recent report [PDF] from the Department of Health and Human Services shows that uncompensated hospital debts are already on the rise in these states.
Texas is also grappling with increased health care costs. Despite its rejection of Medicaid expansion funds, it is still required by the ACA to temporarily raise certain reimbursement rates and expand funding [PDF] for preventive screenings and behavioural and mental health treatment. Texas must also pay for new Medicaid enrollees drawn in by the welcome mat effect: With talk of health insurance in the air, previously uninsured but eligible patients are more likely to obtain coverage.
“Given our demographics and being a border state with a lot of small employers, I think we knew there was always going to be some stranded costs [under the ACA], and of course the nonexpansion of Medicaid just exacerbates that,” says John Hawkins, senior vice president of advocacy and public policy for the Texas Hospitals Association (THA).
In partnership with the Texas Left Me Out coalition and business groups eager to shift their insurance burden to the government, the THA has lobbied for a Texas solution to the coverage gap. Along the lines of what Arkansasand Indianahave done, they propose that Texas use federal expansion money to purchase private insurance for the poor rather than enroll them in Medicaid. A bill to do just that, sponsored by Republican state Rep. John Zerwas, was defeated in the last legislative session, but advocates vow to try again.
Starving hospitals of funding
The state health department, individual hospitals and providers have pursued an alternative Medicaid strategy since 2011. The idea was to “do things more cost-effectively, and that includes for the low-income, uninsured population,” says Lisa Kirsch, deputy director at the Texas Health and Human Services Commission. Yet this strategy has made it more cumbersome for providers to get reimbursed and provides for a gradual reduction in charity care funds, from $3.9 billion in fiscal year 2013 to $3.1 billion within the next few years.
As federal funds grow scarce, Texas hospitals will rely more and more on local property taxes to finance charity care programs for the uninsured. In San Antonio, about a quarter of the budget for University Health System, a public teaching hospital and network of outpatient clinics, comes from Bexar County tax revenues. (By comparison, federal DSH money accounted for only 3 percent of the budget in 2013.) Some of this funds CareLink, a financial assistance program for patients living on up to 200 percent of the federal poverty level (about $38,000 annually for a three-person household), regardless of immigration status.
Nicaraguan immigrants Gloria Villa, 52, and her mother, Gloria Salas, 75, fall into the state’s coverage gap, ineligible for Medicaid or subsidized insurance. Through CareLink, they pay $20 per month to get treated for asthma, knee and back trauma, eye ailments and diabetes at a facility in their West Side neighborhood. Their two-person household survives on a monthly disability check of just $1,000, which Villa has drawn since tearing her shoulder on the job as a parking attendant.
“It’s a great program for people who don’t have insurance,” Salas says. “They work with you if you got money or you don’t, so you can afford it.”
My mom, she already has to worry about my dad, with bills and stuff. I didn’t want her to deal with my stuff.
Texas resident in the coverage gap
But CareLink is no substitute for Medicaid or other comprehensive health insurance. Coverage is limited to University Health System facilities and excludes organ transplants and kidney dialysis. According to Virginia Mika, executive director of CareLink, an estimated 26,000 of the program’s 38,000 members would have qualified for expanded Medicaid under the ACA.
When Anissa Rangel had government-funded children’s health insurance, her regular blood tests were free, and doctor visits cost only $5. Since aging out of the program, she has had to pay $25 for primary care appointments and $29 to $75 for the labwork she needs to monitor her health — not insignificant expenses, which explains why she kept her bloody gums and bruises a secret. “My mom, she already has to worry about my dad, with bills and stuff. I didn’t want her to deal with my stuff,” Rangel says.
In August, three weeks after her discharge from the hospital in San Antonio, she followed up with Estrada at the Laredo clinic. She submitted to blood tests and sought counsel for the bumpy rash that had spread across her arms — an allergic reaction to the gamma globulin.
The hospital bills were already trickling in, starting with a small one, $18 for pathology. Many more, in far greater amounts, would arrive soon.
Rangel requested a leave of absence from Texas A&M International for the fall semester. She was worried not only about her health but also about the family’s budget. Tuition or medical bills — something would have to give. “I’m probably going to go back to school at some point, but it doesn’t necessarily have to be International,” she says. “I was thinking about going into medical billing and coding. I know a lot about that.”