“Isn’t there anything I can do?”
In the chemotherapy ward of a Houston hospital, Chaille White pleaded with the nurses behind the admissions desk to allow her the treatment she desperately needed. She had arrived for her appointment with little left to lose. In the months since Hurricane Katrina had swallowed her hometown of New Orleans, much of what had sustained the 26-year-old had fallen like dominoes. A noxious black mold carpeted every inch of her condemned house. Chaille (pronounced “Shay-lee”) and her 3-year-old daughter, Hailey, had evacuated with a single suitcase hours before landfall. With the state in crisis, she had lost her job as a receptionist with the Louisiana Board of Medical Examiners. And with it, she had lost her health insurance—a catastrophe for a woman who has struggled with lupus since age 16. White had long fought the autoimmune disease with powerful drugs, but six months without access to specialists had taken its toll: Lupus was now attacking her kidneys. Chemo was the only thing standing between White and a lifetime on dialysis.
On February 28, the last domino fell: Her five months of emergency Medicaid, extended to 50,000 Katrina survivors by the state of Texas, expired. When White arrived at Conroe Regional Medical Center near Houston on March 2, the nurses explained that without insurance, the only way she could get chemo was to pay half the price of each $3,500 treatment up front. “We had lost everything,” the single mother says. “I couldn’t come up with that kind of money.” The nurses simply shook their heads and sent her home.
By now, the stories of ruin caused by Hurricane Katrina are heartbreakingly familiar. But for White, as for the approximately 44 percent of other Katrina evacuees who had no health insurance after the storm, the hurricane was only the beginning of the devastation. When Katrina ripped through the Gulf Coast, it laid bare every weakness of the American health care system—first and foremost, that your health insurance is so often connected to your job. Roughly 200,000 working people lost coverage when they lost their job, estimates Blue Cross Blue Shield of Louisiana in Baton Rouge. Like White, the bulk of them are middle- or working-class residents, not destitute enough to qualify for public insurance and not wealthy enough to afford a private policy, which can cost from $50 to more than $400 per month, says Fred Cerise, secretary of the Louisiana Department of Health and Hospitals in Baton Rouge. The trend is mirrored nationwide as companies cut back on benefits and the government does less to fill the gaps. “This is a wake-up call,” says Diane Rowland, executive vice president of the Kaiser Family Foundation in Washington, D.C. “It speaks to how fragile the employment based insurance system can be.” And the massive job loss came on top of so many other miseries. “Generally, we talk about people losing their jobs and insurance, but not also their home, their possessions, their schools, their community,” Rowland says.
One year later, the survivors of Hurricane Katrina are being robbed of their health. In New Orleans, White had seen a rheumatologist and kidney specialist monthly. The private insurance she got through work had covered it all. Living with a chronic disease for nearly a decade had made her tough—stoic, even. But she also knew that her symptoms would be likely to flare up after her flight from the gathering storm. “Lupus has made me a stronger person, better able to deal with things,” she says. “But the more stressed out I get, the more problems it creates.”
Nearly 4 in 10 female caregivers who were displaced reported that their health was only fair or poor—a much higher number than before the storm, according to a study by the National Center for Disaster Preparedness at Columbia University Mailman School of Public Health in New York City. An “astonishingly high” 68 percent of women showed signs of depression, anxiety and post-traumatic stress disorder (PTSD), says David Abramson, lead investigator for the study. “Every day that passes that people don’t get health care will have an impact down the road,” Abramson says. “We are looking at decades’ worth of problems.”
On the eve of Katrina’s landfall, White had watched the news reports with weary resignation. “I had left so many times before, and it was always a false alarm,” she recalls. “We knew that we needed to get out. But you could never have told us we would not be going back.” In the predawn hours of Monday, August 29, 2005, White’s extended family gathered near her home in the sleepy, tree-lined Gentilly neighborhood, and headed for the only hotel where they could find vacancies, a Marriott a five-and-a-half-hour drive west in Houston. They were five cars full, four sprawling generations who had lived in the city their entire lives. One of White’s uncles and his wife were among the only ones who stayed behind. “He helped build the levees,” White says. “He was sure that they wouldn’t fail.” Two days later, he was swept off his roof and drowned while his wife watched; the Coast Guard later plucked her to safety.
In New Orleans, White and her daughter had lived with her mother, Ranata, the owner of a temporary staffing service. “We loved our house,” White says wistfully. They had shared a three-bedroom home with a backyard garden, often hosting family barbecues by the pool. In Houston, the three crowded into a single hotel room for nearly two months. Unable to obtain one of the limited number of rooms that FEMA subsidized, they dipped into their savings to pay the hotel bills until they could secure a townhouse using rent vouchers from the city. “To have three people in one room for two months—and one of them a 2-year-old? It was miserable,” White says.
Nevertheless, she quickly found a new job helping out at the Disaster Recovery Center in Houston, where evacuees went to get aid and information. The job did not provide health insurance, so her only option was Texas’s emergency Medicaid offer. (Louisiana residents who lost their employer-sponsored coverage did not receive even this benefit; a bipartisan federal bill to give emergency Medicaid to all Katrina victims was opposed by the Bush administration and blocked by a handful of conservative senators who objected to its cost.)
Despite her persistence, White couldn’t find a lupus specialist who would accept Medicaid. Doctors in many states, not only those affected by Katrina, find it so complicated to get reimbursed by the program that they turn away its patients, according to physician surveys. So in November, when she broke out in itchy, red spots, White went to the emergency room—the first stop for most underinsured Americans. Doctors at Northwest Medical Center in Houston had little to go on: White’s medical records had been destroyed. It was a pervasive problem. Hundreds of patients had turned up at the University of Texas M.D. Anderson Cancer Center in Houston, for example, not knowing which combination of chemotherapy they needed. “The medical records were gone,” Abramson says. “The medications were gone. Providers were gone. Patients had no way to get referrals or to show what drugs they were taking.” Electronic medical records, still a rarity in the United States, would have prevented the problem, because paper files are vulnerable to flooding, says Nancy Szemraj, communications manager for the Office of the National Coordinator for Health Information Technology in Washington, D.C.
That November day, doctors told White the hives were stress-induced and sent her home with an antibiotic. But she was back in the emergency room right before Thanksgiving; this time, doctors at Northwest lanced a massive, infected boil that stretched across her abdomen. In December, she returned to Northwest twice, first with uncontrollable vomiting, which doctors said was related to a bladder infection, and then shortly after Christmas with dangerously spiking blood pressure. Four days later, she left work early with a crushing migraine. “It felt like my head was going to explode,” she says. “I knew I needed to get back to the hospital.” This time, ER doctors at Memorial Hermann Medical Center consulted a nephrologist. “She needs to be admitted immediately,” he told them. White’s kidneys were failing.
In addition to chemotherapy, the doctors prescribed a drug regimen that cost White $600 a month, even with Medicaid. Chemo knocked her flat and left her immune system so weak that she was forced to resign from her job at the disaster center. She pulled Hailey out of day care—the risk that she would bring home a virus was too great. But the sacrifices seemed worth it: Tests on her kidneys were promising.
Then White’s Medicaid expired. “I’ve contacted my doctor, but there is nothing he could do to get me insurance,” she said in March, after being turned away from the hospital. By day, she worked the phones, calling lawmakers and lupus advocates, reapplying to Medicaid. “I’ve gone door to door to hospitals to see if they would take me—anything so that I can continue my treatments,” she says. At night, after she tucked in Hailey, she lay in her own bed, unable to sleep. She stared at the ceiling and said a quiet prayer.
Despite all her losses, White still had too many assets to receive Medicaid under its standard rules: For a single mother with one child in Texas, the annual income ceiling to qualify is a mere $2,772. And “singles and childless couples, even if they are literally penniless, are ineligible for public coverage,” says Ron Pollack, executive director of Families USA, a health care advocacy group in Washington, D.C. “The safety net is more hole than webbing.” Employees who leave their job can keep their coverage for 18 months under the federal Consolidated Omnibus Budget Reconciliation Act, or COBRA, passed in 1986. But they typically must pay the full cost, plus a 2 percent fee. And workers at companies with fewer than 20 employees aren’t eligible. Of those people who do qualify, Pollack says, “more than four out of five don’t participate—that’s clearly a question of affordability.” Yet efforts to make insurance cheaper, such as government subsidies, tax credits and market reforms, have fallen flat in Congress in recent years. Even the Katrina debacle has not been enough to rouse much interest, says Newt Gingrich, former Speaker of the U.S. House of Representatives and founder of the Center for Health Transformation in Washington, D.C. “If government leadership would take advantage of this opportunity, it could be a genuine moment of innovation,” he says. “What’s frustrating is that I don’t see any evidence of a serious effort in that direction.”
In the case of the Katrina uninsured, experts are keenly worried about people neglecting their peace of mind as well as their physical condition. The number of psychiatrists in three Louisiana parishes dropped from 251 before the hurricane to the full-time equivalent of fewer than 33, according to state figures. Worse, the full extent of the trauma may not have revealed itself. “A person might not have been depressed in the immediate aftermath, but eight months of living out of a trailer or in a shelter, not knowing how you’ll pay your bills, has brought on depression,” says Raymond Crowel, a psychologist and vice president for mental health and substance abuse services for the National Mental Health Association in Alexandria, Virginia. Even a strong thunderstorm can trigger PTSD in a hurricane survivor, sometimes years later. Crowel sighs at the prospect. “This is a continuing, slow-motion disaster.”
Chaille White went two months without chemotherapy before applying for disability under Social Security—essentially an admission that, at 26, she would never work again. At press time, she was receiving temporary Social Security payments until the government could process her claim. She restarted her monthly treatments May 1, and doctors have been encouraged by her progress. Still, her spirits darken in the days following her treatments, when her migraines pound and her immune system is so weak she can hardly get out of bed.