The Danger Within Us

DENNIS FEGAN WOKE UP with a start. He rolled over, pulling some covers with him as he scanned the darkness for his clock radio. Slowly his eyes focused on the tiny fluorescent lights telling him it was just a few minutes after 2:00 a.m. He flicked on a light, went to the laundry room, where he kept a calendar and a pen, and made a vertical mark under the date. It was July 2, 2006.

Fegan had trained himself to mark each seizure on his calendar to help his doctors manage his medicines. This night would prove unusually bad. He was awakened repeatedly by a pain in his throat. In a fog of fatigue and darkness, he eventually lost count of just how many seizures he had—but by morning there were a dozen marks on July 2, 2006.

Every Sunday for the previous fourteen years, Fegan, an imposing 48-year-old veteran of the hardscrabble Texas oil industry, had had brunch with his parents at the Town & Country Café in a small strip mall not far from Fegan's home, in Corpus Christi, Texas. This custom was his parents' way of keeping tabs on him ever since he'd been diagnosed with epilepsy. But that morning when his parents called, Fegan told them to go along without him. He wasn't feeling well. Nothing serious. He just needed to get some sleep. He didn't mention that he was having a bad run of seizures.

As they finished brunch at the Town & Country Café, his parents, seated in a booth and served by their favorite waitress, Colleen, decided to bring some food to their son. They ordered the breakfast Fegan loved—egg-and-potato taquitos—to go, then drove over to the working-class section of town where he lived.

Fegan's parents, George and Irene, had been born and raised in Texas. Like most of their neighbors, they were "good Republicans," no-nonsense people who raised their children in a strict Catholic household. George was a geologist with the sprawling Texas oil industry. He was proud of his work and grateful for the stable income it provided. He and Irene liked both Presidents Bush, and they didn't hold much truck with people who were always harping about excessive corporate profits and the need for social welfare. Fegan had followed in his parents' footsteps. The last president he liked or paid any attention to at all was Ronald Reagan.

Irene knocked on the front door of Fegan's small, neat ranch house. When she got no response, George banged on the door. Finally they dug up a spare key they had and cautiously let themselves in. As they reached the small dining room, Fegan staggered out of his bedroom looking dazed. He peered at his parents, sat down at the dining-room table, and abruptly lost consciousness. Unable to reach him in time, George and Irene watched helplessly as Fegan fell sideways off his chair, slamming his head hard onto the uncarpeted floor.

Within a few minutes, Fegan roused, got up, and sat back down in the dining-room chair. Then, as if in a movie set to run in a sickening continuous loop, his parents watched the same scene all over again: Fegan fell off the chair, this time slamming face-first onto the floor. Within a span of minutes, he awakened. Now fearful of another fall, he wiggled across the floor and propped himself up in a sitting position with his back against a wall and his legs splayed in front of him. His jeans were wet with urine. He looked half dead. And then he fell over again.

Fegan's cycles of passing out, waking up, and passing out again repeated like clockwork. His parents frantically dialed Fegan's neurologist, Dr. Juan Bahamon. Even though it was a Sunday morning, the doctor answered promptly and told them to dial 911 for an ambulance. He'd meet the family at the hospital. While they were waiting for the ambulance, Fegan told his parents he'd been having seizures since two that morning. Now, some ten hours later, Fegan's parents privately wondered how long he could last. They later learned their fears were not unwarranted.

By the time the ambulance arrived at Fegan's home, Irene and George Fegan had watched their son lose and regain consciousness at least eight times. The lead paramedic, believing Fegan was having seizures, injected diazepam, a drug commonly used to stop the life-threatening continuous seizures known as status epilepticus, directly into an intravenous line they'd placed in Fegan's arm. Surprisingly, the diazepam had no effect at all. Fegan continued to pass out and rouse at regular intervals. By then an ugly series of bruises was forming on Fegan's forehead from his falls. But the crew was too distracted by something else to pay attention to the bruises: when they hooked him up to a heart monitor, what they saw stopped them dead in their tracks.

Although he didn't yet know it, Dennis Fegan was already fatefully entangled in a complicated web of human error, corporate manipulation, and regulatory failure that would turn his life into a Kafkaesque nightmare—and that would encapsulate much of what is worst about the American way of healthcare.

The troubles of the US healthcare system are widely recognized. They have been the subject of countless articles, books, and television news stories. Politicians have debated their causes and possible cures for decades. Yet the seriousness of those problems, and the enormous price we pay in wealth, resources, and lives, are still not fully understood by most Americans. Consider a few of the appalling facts.

According to the Institute of Medicine (IOM), Americans today not only live shorter lives, they're also sicker than the people of virtually all other well-off nations.30 And according to the United Nations, the US ranks number 43 in life expectancy, below Costa Rica and Cuba and just ahead of Lebanon.31, 32 Life span has declined over the past two decades in the US for the first time since World War II.33 Now, in 43 percent of US counties, women are no longer living as long as their mothers.34–36

Personal habits such as smoking and drinking are part of the cause of our shorter, sicker lives, but only a small part: Americans smoke and drink less than people in a number of peer countries.37, 38 What the US does have compared to other wealthy nations are higher rates of violence, obesity, and drug use.30 Only three nations included in the IOM report have higher homicide rates than the US: Mexico, Turkey, and Estonia.30 But even these issues account for only a fraction of the excessive mortality in the US.

One huge problem is our squandering of resources on ill-advised treatments. The US spends trillions of dollars on healthcare each year, and 20 to 30 percent of that care is considered unnecessary.39–41 Many treatments do significant harm beyond wasting resources: medical interventions (including implantation of medical devices) are now the third leading cause of death in the US, killing an estimated 225,000 to 440,000 Americans each year.42 That's more deaths than from diabetes, murder, car accidents, and AIDS combined. By 2012, prescribed medicines, such as blood thinners and drugs for diabetes, were causing so many deaths that the nonprofit group Institute for Safe Medication Practices conducted a study to quantify the number of deaths and concluded that prescribed medicines are "one of the most significant perils to human health resulting from human activity."43 Although the precise number of deaths from medical error, drug and device complications, and overtreatment is subject to debate, even if the numbers were cut in half they would still comprise the third leading cause of death in the US.

We also have a problem unheard of in other wealthy nations: a large uninsured and underinsured population, which is associated with an estimated 45,000 avoidable deaths per year.44 Despite the promise of the Affordable Care Act of 2010 (often called Obamacare), unpayable medical bills continue to be the leading cause of bankruptcy in the US.45–47 As we spend more and more each year on healthcare, we threaten not only patients' lives but also their personal finances and the nation's economy.

The causes of these devastating statistics are numerous and complex, with roots in politics, economics, and social and cultural forces. But at the heart of the problem is the growing wealth gap, which has a profound effect on life span, and a massive healthcare industry that is sapping our economy.48–51 Healthcare is now the single biggest sector of the US economy. It is bigger than big oil, bigger than big banking, and bigger even than the famous military-industrial complex that President Dwight Eisenhower warned about in his farewell speech. In 2013, the most generous estimate pegged the price of the military-industrial complex at $1.3 trillion, while healthcare expenditures in 2015 were $3.2 trillion, consuming nearly one of every five dollars spent in the US.52, 53

We may be less healthy and long-lived than the people of dozens of other nations, but in one respect America comes first: we are number 1 in healthcare spending, far surpassing all other countries.

Life Expectancy vs. Healthcare Spending by Country, 2015.
Credit: Longevity from World Health Organization data; expenditures from the Organisation for Economic Co-operation and Development.

The poor performance of US healthcare strongly suggests that we are not getting what we should in exchange for this massive investment. And the wealth and power of the healthcare industry helps to explain why this is so. Over the past two generations—since the late 1960s—American healthcare has gradually been transformed from a relatively modest professional endeavor ruled mainly by traditional ethical norms governing independent doctors into a vast network of institutions dominated by for-profit corporations whose chief loyalty is to their shareholders and nonprofit organizations that function much as for-profit entities do.

While universities, government agencies, and some not-for-profit organizations such as certain hospitals and clinics continue to play an important role in developing, regulating, and administering healthcare treatments, they have been increasingly forced to follow the dictates of for-profit medical groups, hospital chains, insurance companies, drug manufacturers, and medical device makers, whose huge economic footprint translates into enormous political clout. Taken together, this interlocking network of organizations makes up the medical-industrial complex. In October 1980, Arnold Relman, then editor of the New England Journal of Medicine, described "The New Medical-Industrial Complex," comparing it to the military-industrial complex, and said it posed "troubling implications."

The birth of the medical-industrial complex can be traced in part to the explosion of new healthcare technologies beginning in the 1950s and '60s, an era of healthcare innovation marked by the development of the first vaccines against polio, measles, and mumps.54 The cardiopulmonary bypass machine first came into use in the early 1950s. Pacemakers, hip replacements, organ transplants, polymerase chain reaction, DNA fingerprinting, gel electrophoresis, stents for heart disease, and stem-cell therapy were all developed after 1960. CAT scans and MRIs were first performed on humans in 1971.55 Commonly prescribed drugs exploded from a mere handful to many thousands, aimed at treating everything from high cholesterol to infections, restless leg syndrome, balding, overeating, and cancer.

Some of these innovations offer amazing benefits to the victims of age-old afflictions. Certain childhood forms of leukemia are now curable.56 Infections that were previously life-threatening have been transformed into minor inconveniences. Diseased and worn-out human hearts, livers, and lungs can be replaced or transplanted. The discovery of stem cells, the primordial cell type that gives rise to every other cell type—from hair to brain to liver and nerve—has brought researchers around the world close to developing lab-grown organs of every sort. Doctors have successfully implanted lab-grown skin, corneas, and bladders into human patients.

Some of the most recent breakthroughs have been so dazzling that they strain credulity. When an Internet image of a mouse growing a human ear on its back went viral, some viewers said it must have been digitally altered. It wasn't. The hairless laboratory mice running around in cages with ears on their backs were developed by Robert Langer, an MIT researcher, and Dr. Joseph Vacanti, director of the Laboratory for Tissue Engineering and Organ Fabrication at the Massachusetts General Hospital, in Boston.57 The human-size ears, which take up almost the entire back of a mouse from neck to tail, begin life as a biodegradable ear-shaped scaffold, which the researchers seed with bits of cow cartilage. The structure is surgically implanted under the skin of "nude mice." The ears can be made to order for shape and size to match the needs of the human recipient.

The growth of complex body parts took a giant step forward in early 2008, when Doris Taylor created the first beating lab-grown heart.58 Like Vacanti, she created a scaffold by dissolving the cellular material of a rat heart, then placing a mix of heart stem cells on the matrix. With careful environmental controls, the cells not only began to beat, they also even grew their own blood supply. "It's gorgeous," Taylor said of her creation. "You can see the whole vascular tree, from arteries to the tiny veins that supply blood to every single heart cell." By coupling lab-grown hearts with pacemakers, she hopes to create a supply of made-to-order, rejection-free human heart implants—a salvation for thousands of people who die each year while awaiting traditional transplants.