BRISTOL, Tenn. -- On her 32nd birthday just over a year ago, Monique "Nikki" White had such severe pain from lupus, a disease in which the immune system attacks healthy tissue, that she couldn't open her presents. Three weeks later, as skin lesions spread over her body and her stomach swelled, she couldn't sleep.
"Mama, please help me! Please take me to the E.R.," she howled, according to her mother, Gail Deal. "OK, let's go," Mrs. Deal recalls saying. "No I can't," the daughter replied. "I don't have insurance."
In the morning, she had a seizure and had to be rushed to the hospital anyway. Doctors found that her kidney had failed, her liver wasn't much better and her intestines were perforated, a symptom of pancreatitis. Those can be life-threatening side effects of lupus or of a drug she was taking. Her rheumatologist prescribed it in June, telling Ms. White to return every four to six weeks and undergo a CT scan so that he could check for signs of infection or organ damage.
But Ms. White didn't go back. In July, she received a notice that she was being thrown off the Tennessee Medicaid program, known as TennCare, which launched an ambitious expansion in 1994 to cover people like her. Now, it was being scaled back because annual costs more than doubled over 10 years.
The CT scan would cost Ms. White at least $2,000 if TennCare wouldn't pay. Each visit to the rheumatologist would cost another $80 and each blood test at least $183. Ms. White had been too sick to work regularly for four years, and she told her primary physician that she couldn't afford to see the specialist again.
Many Americans have health insurance, and 47 million don't. But lots of people are in a messy middle -- sometimes insured by employers, sometimes by government, sometimes not at all. Ms. White was left without health insurance just as her disease took a turn for the worse. While battling to stay alive and going from doctor to doctor, she had to navigate among government programs, private insurance rules and hospital charity.
Her case illustrates how arduous the American health-care system can be, even for an educated person in a middle-class family. Unique among developed countries, the U.S. delivers medical care through a patchwork of public and private entities, paid for by another patchwork of public and private insurers. Coverage is tied to the workplace or to intricately crafted government programs. For some, the system can offer more flexibility and better health care than that offered by national health regimes, but others can get lost in the tangles.
Ms. White's rheumatologist, Chris Morris, says follow-up tests he recommended would have turned up danger signs. The primary-care doctor, Amylyn Crawford, says: "If she had insurance, she would have gone to the emergency room sooner."
Nikki White had more advantages than many patients. She went to college, once aspired to be a doctor and worked in a hospital trauma ward. She researched her disease painstakingly. "She always went to doctors with a list of do's and recommendations," her mother says.
Her mother and stepfather, both retired managers at a unit of the pharmaceutical firm GlaxoSmithKline PLC, helped her pick her way through the medical maze. She saw at least a dozen doctors and got care from at least five hospitals. One Tennessee hospital estimates it spent $900,000 on her for which it was never reimbursed.
But the state Medicaid bureaucracy dropped her, only to reverse itself months later. Meanwhile, miscommunication with a doctor kept her from getting follow-up care when she needed it. The family didn't always understand every option available to Ms. White. A proudly independent woman, she sometimes refused to seek assistance. All this proved fateful in her struggle against a serious disease.
Nikki White grew up in Bristol, in the Appalachian Mountains in northeastern Tennessee. Her parents divorced when she was 18 months old; her mother remarried when Nikki was five. An only child, tall and lanky, she liked to water-ski, took ballet lessons and played soccer and basketball.
At age 13, she started having severe stomach pains that forced her to quit basketball. She was sick so often that some teachers thought the honor student had gotten lazy, her mother recalls. Mrs. Deal took her daughter to doctor after doctor, but none came up with a definitive diagnosis for lupus, a disease that's often hard to recognize. By the time she graduated from high school, the 5-foot-11-inch blonde weighed just 120 pounds.
Ms. White became convinced through her own research that she had lupus long before she was diagnosed in 1994 at age 21. When the doctors made the diagnosis, Ms. White told her mother, "I'm not crazy," her mother recalls.
Though lupus can be fatal and has no cure, most people who have it live normal life spans, according to the Lupus Foundation of America. Mary K. Crow, past president of the American College of Rheumatology, puts the figure at 80 percent to 90 percent. Doctors manage it by adding or subtracting medications and changing dosages to prevent complications. "All different organ systems are involved and the disease changes over time and there are various complications people can have," says Dr. Crow, a professor at Cornell University's medical school.
After her diagnosis, Ms. White stopped dating. She dropped her ambition to be a doctor. After studying psychology in college, in 1999 she worked at a Barnes & Noble bookstore and then began at an Austin, Texas, hospital trauma unit evaluating patients before treatment. The hospital job came with health benefits.
In 2001, her lupus worsened, and Ms. White quit her job and moved back into a garage apartment next to her parents' home in Tennessee. She couldn't get private health insurance at any cost, her mother says. "I would have sold my house but she wouldn't hear of it," her mother recalls. "We would've depleted everything. We would've done everything it took to get her better."
To try to counter lupus' effects, Ms. White exercised. She continued to study the disease obsessively. "She was totally involved with her health care and she knew better than any one of us what should be done," says her stepfather, Tony Deal. She wrote a novel, never published, about a psychiatrist with lupus. She stayed well enough to occasionally help her parents with establishing a tree farm -- their business after retirement -- and to take her cranky dog Hugo for morning walks while singing, "You Are My Sunshine."
For a while, Ms. White resisted her mother's pleas that she enroll in TennCare, the Tennessee version of Medicaid. In 1994, Tennessee had expanded its program beyond the federally mandated coverage of low-income children, pregnant women and the disabled -- broadening it to cover uninsured adults and those who found it difficult then to get private insurers because of pre-existing conditions. The young woman said she didn't want to be on welfare, her mother recalls. But she finally applied and was accepted in October 2003.
She started seeing Dr. Crawford at a federally funded health clinic. The young doctor says she was impressed with the patient's knowledge of her disease and often took her recommendations.
When Ms. White's condition worsened in early 2005, Dr. Crawford turned to Dr. Morris, one of the few rheumatologists in the area willing to treat TennCare patients. He agreed to accept TennCare payments that he says were below his costs, as well as the program's restrictions on visits and prescription drugs. He saw Ms. White frequently between February and July.
He became concerned that lesions on her chest were signs of an inflammation of the blood vessels that threatened her kidneys and other organs. He prescribed azathioprine, an immunosuppressant sold under the brand name Imuran, to treat the symptoms. He ordered the follow-up CT scan, return visits and blood tests to watch for any signs of danger: Both the disease and drugs used to treat it can damage the liver, blood and pancreas.
During the summer of 2005, TennCare warned Ms. White in several letters that changes to the program would eliminate her coverage. TennCare overall had ballooned to cover nearly a quarter of the state population and was contributing to a budget deficit, causing a political firestorm. Gov. Phil Bredesen, a conservative Democrat who inherited the program, tried first to reduce benefits. When a lawsuit stopped that, he eventually eliminated 170,000 Tennesseans from the expanded program, roughly one-third of them people who had been rejected by private insurers. TennCare suggested they go to federally funded clinics, and offered new subsidies to hospitals coping with a surge in charity cases.
Ms. White's concern was mounting over the drug she was taking. On July 31, she appealed her termination in a handwritten letter to TennCare. "If left on these medications without medical supervision or for an extended period of time, these drugs could lead to the formation of cancer," Ms. White wrote.
Meanwhile, she somehow got the azathioprine prescription refilled, even though pharmacy receipts show a refill required a doctor's OK. Ms. White underlined the drug label's warning that she needed regular blood tests.
With Ms. White's health deteriorating, her mother says she and her daughter called Dr. Morris at least 10 times separately or together without reaching him. "His office would never let us talk to him and we would always leave a message for him to call us back," Mrs. Deal says. Dr. Morris says he received only two phone calls and asked a nurse to return them.
Dr. Morris says his office learned in August that TennCare would not pay for the CT scan he had ordered. But if he had realized Ms. White was avoiding care because of the cost, he says, he would have asked her to come in anyway or at least see her primary physician, Dr. Crawford.
Ms. White also applied for Supplemental Security Income, a federal program for the disabled administered by the Social Security Administration. Tennessee is one of about 30 states in which disabled SSI recipients, by law, qualify for regular Medicaid. But the agency determined that she didn't, at the time, meet its strict definition of disability.
Because she had been insured by TennCare for more than 18 months, she should have been protected by a federal law adopted in 1996 to try to prevent private insurers from rejecting applicants based on pre-existing conditions, with some caveats. A three-page TennCare form letter she received in July 2005 alluded to that protection only indirectly, saying, "You have special rights if you apply for health insurance within 63 days."
Ms. White didn't know about the details of the federal law until four months later, in December, when TennCare mentioned it in another form letter eight days after the rejection of her appeal. TennCare spokeswoman Marilyn Wilson says the agency waits to send such details to rejected applicants until it can include the precise date their Medicaid coverage ended.
As Ms. White's skin lesions spread to her hands, she had to wear gloves to use a pen. Still, she jotted down symptoms on whatever happened to be close at hand -- journals, napkins, little pieces of paper that marked her place in her Bible. In an Oct. 10 note, she wrote, "Awake choking on blood running down back of throat; nose bleed ensued shortly afterward. Good amount of blood covering my face, teeth, in my mouth. Lasted about 10 minutes...Surging pains in my head, but deeper, as if in my brain. Pulsing pain continued intermittently. Really frightened, tried not to panic."
"She would tell me that if she didn't get any kind of medical help, she wouldn't last much longer," says Brittney Hill, who roomed with her both in Austin and Bristol.
Then came the emergency visit to Wellmont Bristol Regional Medical Center on Nov. 21. She survived a series of surgeries that day to clean up dead tissue in her stomach, and seemed like she was bouncing back.
Over the next 10 weeks, Dr. Michael Rowell at Bristol Regional had to perform more than two dozen additional operations to clean up recurring dead tissue. Her stomach remained open throughout that time. Doctors told Ms. White's parents several times that she wouldn't survive. But when she woke, her mother recalled, she said repeatedly, "I don't want to die. Don't let me die."
Thomas W. Green Jr., an internist who coordinated her care, says, "The whole hospital got very, very emotionally involved with this girl and this family. She didn't give up. They didn't give up. There were minor, major miracles, major setbacks."
The hospital kept going even though Ms. White had no insurance. Bristol Regional spent about $900,000 on Ms. White's care. Her tab was one of the nonprofit hospital's largest charity cases that year. In all, it wrote off nearly $19 million in 2006. "We spent a lot of money on this girl and nobody complained about it," Dr. Green says.
The family hired a lawyer to appeal her rejection as disabled by the Social Security Administration. And when the final TennCare rejection letter came in early December, the family recruited help from friends and acquaintances to help find private insurance. In early February 2006, BlueCross BlueShield of Tennessee agreed to accept an application.
On Valentine's Day, just when her family was confident that Ms. White would eventually go home from the hospital, doctors found a fungal growth near a heart valve. Dr. Green says it was a side effect of the heavy doses of antibiotics she had taken in connection with the long series of surgeries.
Bristol Regional didn't have the resources to perform the new surgery, Dr. Green says, but if the growth wasn't removed, the infection could spread to her brain and trigger strokes. "She was saying, 'I don't want to die,'" Mr. Deal says. "She's a fighter. She wants to live. We want to give it all to make sure she has the best chance to survive."
By early March -- eight months after TennCare's letter first announcing it was ending her insurance -- Ms. White was informed that her BlueCross coverage was in place, and would cover expenses from February. It was an expensive policy: $6,000 a year with a $2,000 deductible and a cap on out-of-pocket spending of $5,500 for care outside the BlueCross network.
Dr. Green tried to get her admitted to Nashville's Vanderbilt University Medical Center, but, according to Vanderbilt spokesman Craig Boerner, surgeons there "determined that she was too sick for surgery." Eventually, she was flown to Duke University Medical Center in Durham, N.C., on March 5. Mr. and Mrs. Deal rented a furnished apartment near the hospital for $1,685 a month. Mr. Deal drove 240 miles each way between Duke and Bristol to take care of the tree farm.
On March 31, the family's appeal to the Social Security Administration was successful. Ms. White, sicker than when she previously applied, was declared a disabled person -- and thus eligible for standard Medicaid in Tennessee.
But by that point, "her illness was extraordinarily complex," says Michael Cuffe, chief medical officer at Duke University Health System. Ms. White had "an overwhelming" fungal infection, respiratory failure and acute pancreatitis -- which was causing the "death and decay of body parts," he says. Because her immune system was so weak, doctors couldn't operate to remove the fungal growth.
On April 29, her mother found her lying in a pool of blood in her hospital bed, bleeding that Dr. Cuffe says was caused by infections and perforated intestines. On May 1, Ms. White asked her mother where she was going to be buried.
About 10 days later, Ms. White had a stroke. Doctors say it wasn't a surprise; lupus patients are prone to blood clots. Ms. White managed to sign a Mother's Day card on Sunday, May 14. But at 3:20 p.m. on May 28, her heart stopped.
A few days later, Dr. Morris's office staff read her obituary in a newspaper. "She would have survived longer had we been able to provide care the way I wanted -- do the proper monitoring and adjust the medicine accordingly," he says. "It's a sad situation all around."
Dr. Crawford is more emphatic. "She'd probably have stayed (alive) if she had TennCare," she says. "No one can say that it caused the problems. It did have an impact on her, on her stress level and on her access to medical care, particularly specialty care. There's a difference between the death of a 20-something versus somebody who's 70 or 80 years old."
Mr. and Mrs. Deal have kept Ms. White's cellphone active so they can keep listening to her voice mail greeting. They wonder if they might somehow have overcome their daughter's independent streak and done something that would have saved her life. "If I had my life to live over," her mother says, "I would have forced Nikki to go to the emergency room that night. If I could've forced her to go, I would have. But I couldn't."
Ms. Wilson, the TennCare spokeswoman, says that trying to expand Medicaid coverage beyond traditional definitions "nearly bankrupted our state." Litigation over the TennCare cutbacks persists. She notes that "if there's a silver lining," it's that for 10 years before the program was curtailed, the state "was able to pay the insurance bills for some Tennesseans who would not have had access to Medicaid payments in any other state."
On June 5, eight days after she died, the state of Tennessee put Ms. White on the traditional Medicaid rolls.
The form letter was sent after TennCare received updated Social Security records showing that Ms. White had been certified as disabled, says Patti Killingsworth, chief administrative officer at TennCare.
"You don't have to wait until you get your TennCare card to get care or medicine," the letter said. "Just take this letter with you."
How and when Monique "Nikki" White had health insurance:
1973-1999: Covered by parents' insurance from childhood until she leaves college
2000-2001: Covered by employer's insurance
2001-October 2003: Uninsured. Ms. White leaves her job because of illness and loses coverage. Unable to obtain individual private insurance, she eventually submits to mother's entreaties to apply for Medicaid.
October 2003-July 2005: Covered by TennCare, Tennessee's expanded Medicaid program until July 2005, when Ms. White is notified she is being cut because program is being curtailed. She appeals but anticipates rejection because she is no longer eligible.
August 2005-January 2006: Uninsured. She seeks federal Supplemental Security Income disability status, which usually makes Medicaid coverage automatic, but is initially denied. She later seeks private insurance.
February 2006-May 2006: Covered by BlueCross BlueShield of Tennessee. On March 31, Social Security certifies her as disabled, which restores her Medicaid eligibility.