A Tragic Story

As it is my 500th post I have elected to tell a story from T. R. Reid’s Healing of America. This story of Ms. White eloquently captures the problems of the American healthcare system. Functionally, America does not have a healthcare system, it has a healthcare marketplace that is driven to produce as large a profit as possible.

According to studies arising from Harvard, one of the conservative bastions of capitalism, each year 40,000 to 44,000 Americans die every year with a medical condition that could have been readily addressed if the person received adequate medical attention but died because they lacked adequate medical insurance. The Harvard figures do not include the number that do not die but who become prematurely disabled or miss work at a high rate due to untreated medical ailments. While horror stories can be told about any system in the world, Ms. White’s story is more common than Americans wish to admit, and some will heatedly claim the Harvard figures and Ms. White’s story are lies.

In blue print is Ms. White’s story as found in two sections of the Reid's book. It is rather long for a blog but deleting sections would do the story a disservice.


RESIDENT OF ANY OTHER rich country, she would be alive today. Around the time she graduated from college, Monique A. “Nikki” White contracted systemic lupus erythematosus; that’s a serious disease, but one that modern medicine knows how to manage. If this bright, feisty, dazzling young woman had lived in, say, Japan—the world’s second-richest nation—or Germany (third richest), or Britain, France, Italy, Spain, Canada, Sweden, etc., the health care systems there would have given her the standard treatment for lupus, and she could have lived a normal life span. But Nikki White was a citizen of the world’s richest country, the United States of America.

Once she was sick, she couldn’t get health insurance. Like tens of millions of her fellow Americans, she had too much money to qualify for health care under welfare, but too little money to pay for the drugs and doctors she needed to stay alive. She spent the last months of her life frantically writing letters and filling out forms, pleading for help.

When she died, Nikki White was thirty-two years old. “Nikki didn’t die from lupus,” Dr. Amylyn Crawford told me.“Nikki died from complications of the failing American health care system. It was a lack of access to health care that killed Nikki White.” Dr. Crawford is a family physician at a no-frills community health center in an old strip mall in a downscale section of Kingsport, Tennessee.


Who was Nikki and what is behind her story? T.R. Reid goes at the end of his book returns to her.


The late Monique “Nikki” White, the bright, vivacious young woman…Tall, slender, athletic, she grew up in a middle-class family in Bristol,Tennessee; her parents were both middle managers in corporate America, and she was covered by a family health insurance plan until she finished college in 1999.

She earned a degree in psychology at the University of Texas and went to work after college for a bookstore near the campus in Austin. It was a perfect job for her. But Nikki, beginning to feel ill, felt obliged to look for a job with health benefits—the bookstore didn’t provide them, and her parents’ plan wouldn’t cover her after she finished school. She found work at a hospital in Austin, where she was eligible for the employee health insurance plan. Some days, Nikki was too sick to go to work; she developed severe stomach pains, extreme fatigue, and skin lesions on various parts of her body.

A doctor confirmed that Nikki had contracted systemic lupus erythematosus, a chronic inflammatory disease that mainly strikes women. This was not good news, but it was hardly a death sentence; about 80 percent of Americans with lupus live a normal life span. “For the vast majority of people with lupus,” says the Lupus Foundation of America, “effective treatment can minimize symptoms, reduce inflammation, and maintain normal bodily functions.” But effective treatment requires health insurance.

In 2001, Nikki was so ill that she had to leave work. That’s when the long, frustrating, and eventually fatal struggle with America’s health care system began for Nikki White. Like most working Americans, she lost her health insurance when she lost her job. “The timing was just tragic,” said her family physician, Dr. Amylyn Crawford. “The insurance system dropped her at the point when she needed it most.”

With grim determination, Nikki applied to every individual insurance plan she could find—in vain. No for-profit insurance company in the United States was willing to cover a person who had chronic lupus. Unemployed and uninsured, she moved home and set up an apartment over her mother’s garage in the green, rolling Appalachian country where Tennessee, North Carolina, and Virginia meet. This not only provided free housing, but the return to Tennessee also meant she could enroll in TennCare, the local version of Medicaid, the government program that provides health insurance for the poorest Americans.

Nikki had trouble finding a specialist who would treat her condition at Medicaid’s payment rates—Medicaid pays doctors less than Medicare, the U.S. government program for the elderly—but eventually she found a rheumatologist who agreed to take her on. The doctor prescribed azathiopine, a drug that would control the inflammation that was causing painful lesions on Nikki’s chest and hands. He warned her clearly that this powerful medication could have dangerous side effects. To avoid them, she needed regular blood tests, CT scans, and office checkups. Neither Nikki nor her mother could pay for such expensive care.

Fortunately, they had TennCare to help. In the summer of 2005, though, Tennessee cut back sharply on its TennCare insurance program. Under the new rules, Nikki White had too much money to qualify for Medicaid. Once again, she was uninsured. She kept trying to get health coverage, but all her appeals were denied. By now, her hands were so painful from the lesions that she had to wear thick gloves just to fill out an application. “She fought and she fought and she fought,”

Dr. Crawford recalled later. For months at a time, as Nikki dealt with a bewildering onslaught of cold bureaucratic form letters, it was unclear whether she was insured or not. “If your TennCare has ended, you should not have gotten this letter,” one missive said. That was followed by another, equally mysterious: “If this box is checked, the person listed in line 3 has at least 18 months creditable coverage. IMPORTANT! This does not mean you have coverage now.” The state Department of Human Services sent TennCare Form Letter 207.5, explaining the extent of her legal right to get insurance: “You can still apply for individual health insurance coverage. Some companies may let you buy a different kind of insurance (not a HIPAA plan). But, they don’t have to. AND, they don’t have to cover preexisting conditions.”

Nikki White was a college graduate and had worked in medical care. She knew how to research health insurance regulations. Eventually, she figured out that Medicaid would have to give her coverage if she was legally determined to be “disabled.” She began filing applications with yet another government department, the Social Security Administration, the agency that determines whether or not an American is disabled. Denied.

By the summer of 2005, Nikki White began to fear that she would never get the medical care she needed. “I don’t want to die,” she said on her thirty-second birthday. “Please don’t let me die.”

In her last weeks of life, Nikki began to receive medical care. In November of 2005, she suffered a seizure—due to kidney failure and perforated intestine—and was admitted to the emergency ward at Bristol Regional Medical Center. From that point on, her insurance problems didn’t matter; under federal law, the hospital had to treat her until her condition was “stable.”

Over ten weeks, she had more than twenty-five operations, all provided gratis. By then, though, the patient was too sick for any hospital to save. In the spring of 2006, at the age of thirty-two, Nikki White died.

Officially, the cause of death was listed as “complications of lupus.” In fact, as her doctor said, the proximate cause of death was a health care system that failed to provide the treatment that would have saved her life. Monique White was an American citizen, guaranteed equal access, along with every other American, to certain basic rights. But she didn’t have equal access to health care. If Nikki had received the standard treatment regimen for lupus readily available to any American with health insurance, she could have lived a normal life span. If she had been a resident of any other developed nation, she could have lived a normal life span. No other rich country would have tolerated the inequality that left Nikki White dead.