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| ILLUSTRATION BY RUTH GWILY |
Without a transplant, Geronimo Oregón would die of liver failure. Could he navigate one of the most restrictive health-care systems in the country?
Geronimo Oregón was wheeled out of the intensive-care unit at Houston’s Ben Taub Hospital on April 17, 2016, his body wired with electrodes and his mother at his side. He had arrived in the emergency room six days earlier, complaining of confusion, stomach pain, and shortness of breath. Physicians had drained nearly half a gallon of fluid from around his right lung, corrected his sodium imbalance (a cause of his confusion), and relieved the worst of his pain. Now Oregón was being transferred to the step-down unit, a kind of limbo between the I.C.U. and the general ward. His new room had a vacuum pump on the wall. When the suction was on, a bright yellow fluid drained out of a tube in his nose and into a clear cannister. Every part of his body—his belly, his face, his eyes—was the same vivid shade. He had jaundice, the result of old red blood cells leaking into his tissues rather than being cleared from his body as waste. In medicine, this is known as a stigmata, a physical mark of illness. Oregón was dying of liver failure. A calculation made using his blood work showed that, unless he received a liver transplant, he had only an eighteen per cent chance of surviving the next ninety days.
I have been an internist at Ben Taub for the past six years. In that time, I have rarely seen patients who lack health insurance, like Oregón, make it to the transplant list. The hospital is part of Harris Health, a county-funded network that provides care for the indigent, but as with most safety nets it does not cover organ transplantation, which can cost hundreds of thousands of dollars. This may be why, when I took over Oregón’s care, I fixated on the tube in his nose. Rather than prolonging his life with invasive equipment, shouldn’t my colleagues and I gear our treatment toward
helping him die comfortably? Normally, we would have recommended against resuscitation efforts, such as shocking his heart if it stopped or connecting him to a ventilator. But when we explained this to Oregón and his mother, Emma, she put a stop to the conversation. Her son, she pointed out, was only thirty-six years old—much too young to die. The medical team decided that addressing Oregón’s breathlessness would be a top priority, even if it meant performing more procedures.
Then a medical student noticed something in Oregón’s history that the rest of us had missed: he used to have Medicaid, but it was taken away. The second part of the revelation was not so surprising. Texas is perhaps the worst state in the union to live in as someone who is poor and terminally ill—a direct result of the political bickering surrounding the Patient Protection and Affordable Care Act, also known as Obamacare. In its original form, the legislation would have helped Oregón. It was designed to insure that all Americans—particularly those who worked but did not have employer-sponsored health care—received basic coverage. As part of this goal, the law mandated that states extend Medicaid to any adult under the age of sixty-five who earned as much as a hundred and thirty-eight per cent of the federal poverty level (F.P.L.). Oregón made only six hundred dollars a month, or sixty-one per cent of the F.P.L. at the time, working as a gas-station attendant. But after the U.S. Supreme Court struck the mandate down, in 2012, some states—including mine—chose to reject the Medicaid expansion and the federal dollars that came with it. Texas now has the strictest Medicaid qualifications in the country. According to
a 2015 report from the Kaiser Family Foundation, for an adult in a family of three to receive coverage, his household income must be less than four thousand dollars per year, just nineteen per cent of the F.P.L. In most cases, childless adults, no matter how little they earn, cannot receive coverage at all.
My colleagues and I had assumed, from experience, that Texas would not fund a transplant for Oregón. But the first part of the medical student’s discovery—that he had ever had coverage to begin with—gave us hope. How, we wondered, did Oregón qualify for Medicaid in the first place? Could he again?
Oregón was born in Mexico City, raised in the state of Michoacán, and brought to Houston illegally when he was nine. His father had largely abandoned the family years earlier, leaving Emma to make ends meet by working night jobs. The money was enough at first, but then, when Oregón was thirteen, he began having seizures in school. Emma took him to Ben Taub, where he was diagnosed with epilepsy. Medication brought his convulsions under control, but he never returned to school. His father, believing that Oregón would receive better treatment in Mexico, demanded that he be sent to live with his grandparents in Michoacán. Emma eventually relented out of fear of her ex-husband, who had been abusive toward her in the past. Back in Mexico, Oregón’s grandparents put him to work tending their livestock. He didn’t return home to Houston until the age of twenty, this time as a legal U.S. resident. He had only a sixth-grade education, but he was bilingual; he joined the Job Corps, a federal career-training program, and found employment immediately.
Oregón worked low-paying jobs—as a dishwasher, a cook, and at the gas station—for most of his adult life, always making enough to pay his portion of the rent that he shared with his mother. He received affordable medical care, including treatment for his epilepsy, through Harris Health. In December of 2010, Oregón’s primary-care doctor detected early signs of liver damage—the beginning of a condition called cirrhosis—in his blood work, diagnosing it as a result of hepatitis C infection. Hep C, a virus, can be transmitted through contact with infected blood or, more rarely, through unprotected sex, and is a common cause of liver disease. According to the World Health Organization, hundreds of thousands of people die of complications from the virus annually, and as many as thirty per cent of patients with chronic hep C infection develop cirrhosis within twenty years. Since Oregón was young and never drank—alcohol abuse aggravates liver damage—the specialists at Harris Health decided not to treat his hep C, out of concern that mixing antiviral medications with his epilepsy drugs would worsen the damage. They monitored his health consistently for years.
On June 9, 2014, Oregón went to his night shift at the gas station feeling a little tired. A few hours in, he experienced a wave of nausea, suddenly vomited a large quantity of blood, and passed out. An ambulance brought him to Ben Taub, where doctors admitted him to the I.C.U. Oregón’s liver disease, they discovered, was progressing much faster than expected. He would need new medications and, eventually, a transplant. The liver specialist, aware that Harris Health could not cover the procedure, referred Oregón to a hospital social worker, who recommended that he enroll in Social Security Disability Insurance, a program for workers who have reliably paid Social Security taxes but become disabled before they reach retirement age. S.S.D.I. would give Oregón enough money for rent and food, and it would also help him recoup some of his mounting health-care costs. More important, it would change his Medicaid status: in Texas, if you’re disabled, you can qualify for the program as long as you have less than two thousand dollars in assets and
earn less than seven hundred and thirty-three dollars per month. Oregón seemed to fit the state’s narrow standards.
After he was discharged from the hospital, Oregón went to the disability office, filed the appropriate paperwork, and, in September of 2014, acquired his Medicaid card. Two months later, however, he received notice that his health-care benefits had been terminated. S.S.D.I. payments are calculated according to a person’s average lifetime earnings before he became disabled. When Oregón’s started coming in, they amounted to nine hundred and twelve dollars per month, which put him over the Texas income threshold. The fact that he had paid into Social Security, in other words, made him ineligible for social health care.
Had Oregón lived in any other state, this would not have happened. In a Medicaid-expansion state, such as West Virginia, Oregón would have had no trouble maintaining his coverage. And even in other states that didn’t adopt the expansion, like North Carolina and Missouri, patients like Oregón still have hope of a transplant in a life-or-death situation. That’s because these states allow for a “medically needy” pathway, or a “spend-down” program, whereby patients can meet the Medicaid limit by deducting certain items, including unpaid medical bills, from their income. Texas has such a plan for children and pregnant women, but not for the disabled. When I told this to a social worker at a liver-transplant center in Missouri, she sighed over the phone. “Texas sounds tough,” she said.
For nearly the next two years, Oregón received frequent checkups from his physicians at Harris Health, and Emma took on extra work, including night shifts at a local sports bar. One avenue remained open to them. Disabled Texans who can’t get on Medicaid and can’t afford insurance may apply early for Medicare, the federal health-care program that usually applies to Americans older than sixty-five. But even those who have paid enough into the system, as Oregón had—his paychecks were small but consistent—must wait twenty-four months before coverage starts. This is in addition to the five-month waiting period for S.S.D.I. benefits. In the debate over the Affordable Care Act, Congress considered shortening the twenty-four months to six. But when the Congressional Budget Office estimated that the change would add eighty billion dollars to the A.C.A.’s cost, legislators dropped the issue, hoping that an across-the-board Medicaid expansion would help cover most of the patients left in the gap. It certainly would have covered Oregón. Instead, he would have to wait until January of 2017 to be approved for Medicare—many months after he needed a new liver.
Before my first float—the overnight shift in which a fresh doctor takes over the care of a particular specialty’s patients—the chief resident gave me some advice. “Never go down alone,” she said. Since calling for help during this shift usually involves waking up a supervising doctor, the natural instinct is to do so only when a catastrophe is imminent. That first night, I was caring for a woman with congestive heart failure. As she relayed her history to me, she had to stop often to cough. I told myself that the cough wouldn’t worsen, but soon she was fighting for breath, sitting up in her hospital bed and gripping the guardrails. I knew I had let things go too far, so I called a resident. He took one look at the chest X-ray I had ordered and made a diagnosis: the woman had fluid in her lungs. She required a diuretic, which we quickly ordered. I apologized to him for not having recognized obvious pulmonary edema myself, and for calling him so late. “Why else would I be here?” he said. In a matter of minutes, the patient started breathing much better.
After Oregón was transferred to the step-down unit, we updated his mother on his worsening condition every day. We told her how the fluid around his lungs had started to suffocate him, how his liver could no longer stop him from bleeding into his skin, and how his kidneys had started to fail, all in the less than forty-eight hours since he had left the I.C.U. We considered new funding possibilities and ran into dead ends. Would the Social Security office lower Oregón’s disability check to seven hundred and thirty-three dollars a month so that he could requalify for Medicaid? No, administratively this wasn’t possible. Would the nearest transplant center consider performing the procedure as charity? This also wasn’t an option. Although Oregón was deemed a good candidate, there was no financing for his post-operative care, which included expensive immunosuppressive drugs. Even purchasing health-care insurance outright wasn’t feasible. The open-enrollment period for Obamacare had passed, and private insurers told Emma that her son’s illness did not meet their criteria for a life-changing event.
Ultimately, it seemed that the only way not to go down alone was to alert someone with power and influence. On April 26th, with Oregón still deteriorating, the medical team at Ben Taub called the office of John Culberson, the representative for Oregón’s congressional district, in Houston. Culberson, a Republican, opposed both the passage of Obamacare and the Medicaid expansion. But Oregón was a constituent, so two of Culberson’s staffers immediately began asking officials around the state who might be able to fund a transplant evaluation. Two days later, Emilie Becker, the medical director on call for the Texas Medicaid program, phoned me directly to say that several administrators at her office were working on the case, too. They needed one more piece of documentation, though—Oregón’s latest bank statement. Could we expedite things by faxing it over?
Oregón was by this point in no condition to manage the request on his own; his head was pulsing with pain and his kidneys were in total failure. His mother found the bank statement and gave it to the medical team. Three entries appeared in Oregón’s transaction history: a deposit of nine hundred and eighteen dollars from the Social Security Administration, a cash withdrawal the next day in the amount of nine hundred dollars, and another deposit of nine hundred and eighteen dollars twenty-nine days later. With the fax on its way, I relayed to the team my fear that, because the monthly Social Security check exceeded the stated limit for childless adults with a disability, our efforts would amount to nothing. One of the social workers was so confident of this that she wrote as much in a note, appending it to Oregón’s chart: “He will be denied this benefit.” Later the same afternoon, however, I received a call from the Medicaid office. Oregón had been approved.
As we hurried to transfer Oregón to a transplant center, a staffer at Culberson’s office called for an update. I thanked her for her help. “Of course,” she said. “This was someone’s life at stake.” Although she and her colleagues had not dealt with a situation like this before, staffers for two other U.S. representatives in the Houston area recalled instances in which only congressional advocacy had helped a critically ill patient obtain coverage. I spoke with financial counsellors at several liver-transplant centers around Texas, who estimated that, in a given three-month period, between one and nine patients are disqualified from Medicaid because their disability payments are too high. Nobody could say what becomes of these patients—whether they somehow purchase insurance or move to states with less stringent Medicaid rules, or whether they simply die from lack of a transplant. “I’m sure that happens,” Representative Gene Green, of Texas’s Twenty-Ninth Congressional District, which serves eastern Houston, told me. When I called Becker to thank her, too, I couldn’t help but ask how, in the end, Oregón had qualified. She didn’t have an answer. “It seems like you got the right people involved,” she said.
On Friday, April 29th, Oregón was transferred to Baylor St. Luke’s Hospital, where he was evaluated by the transplant team. Shortly afterward, his blood pressure dropped dangerously low. He was intubated and placed on a ventilator, and his physicians also began dialysis, to take the strain off his kidneys, and set up a constant stream of intravenous medications. Very quickly, the documentation of Oregón’s treatment, prepared for billing purposes, took on an ominous tone: “This patient has a high probability of sudden, clinically significant deterioration, which requires the highest level of physician preparedness to intervene urgently.” Nevertheless, the team at Baylor St. Luke’s was able to get him stabilized. They decided that it was time to place him on the transplant list. According to the liver specialist, he would likely receive a good rank; livers are meted out according to necessity, and his condition was dire.
That same day, however, the nurses noticed that something wasn’t right. When they inserted a needle into Oregón’s arm to draw blood, a procedure that, even in a heavily sedated patient, would cause a flinch, he didn’t move. Even more concerning, when the doctors moved Oregón’s breathing tube around to test whether it would still provoke a natural coughing response, he only lay there—no cough, no fidgeting, nothing. A CAT scan confirmed the worst: bleeding in the brain. Surgery was not an option, since the bleeding was too widespread. The doctors waited five days to see whether Oregón would regain basic brain function, performing the same reflex checks over and over. Once it became clear that he would never recover, Oregón was taken off the transplant list. On May 10th, a month to the day after he came to the E.R. at Ben Taub, his mother asked the medical team to remove her son from life support.
Oregón’s wake was held two days later, at Santana Funeral Directors, a squat red brick building on the service entrance to one of Houston’s busiest freeways. I arrived late in the afternoon, after finishing my rounds at the hospital. Emma greeted me at the entrance and walked me to her son’s casket. “Look at him,” she said, pointing out how the yellow in Oregón’s skin had darkened into a dusky brown. “We didn’t have to use much makeup.”
I expressed my condolences as best I could. I said that Oregón wasn’t suffering anymore. I said that she had inspired my colleagues with her devotion to her son. I asked whether it would be O.K. for me to write about what she had been through. “Please do,” she said. Throughout Oregón’s stay in the I.C.U.s at Ben Taub and Baylor St. Luke’s, Emma had slept beside him, on a love seat, and rubbed his swollen feet after the doctors and nurses left the room. Before that, when he grew ill, she had stayed home with him, even though she couldn’t afford it, to care for him and make sure that he didn’t fall. Now, at the wake, she remained by his side again.
When I had finished talking, Emma asked me to pass along a message to the team—not just the doctors but also the social workers, the administrators, and a congressional staffer who had visited with her and her son. It was something that Oregón had told her toward the end, when it looked as though he might indeed receive a transplant. “I feel so important,” he had said. “Everyone treats me like I’m rich.”
Ricardo Nuila is an attending physician at Baylor College of Medicine and a professor of medical humanities at the University of Houston Honors College.
