In February 2007, Garet Hil’s 10-year-old daughter came down with what looked like the flu: a persistent fever, vomiting, dizziness, fainting. On her third trip to the pediatrician, the doctor told the family to take her to the emergency room. There, a blood test delivered frightening news: her kidneys had shut down.
“They put us in an ambulance and rushed her to a nearby hospital that had a pediatric nephrology unit, which put her on dialysis immediately,” recalls Hil. “That saved her life.”
Unfortunately, dialysis also threatened to take over her life. As the long-term treatment for permanent kidney failure, dialysis is a good-news/ bad-news technology. It is life-preserving, but often debilitating and demoralizing—akin to saving polio patients with iron lungs, or treating cancer with never-ending chemotherapy. Dialysis patients are prone to anemia, bloating and weight gain, low blood pressure, and infection from their catheters. They gradually lose the ability to urinate and can drink very little (not very little alcohol—very little anything). Many children on dialysis suffer from stunted growth. Dialysis does not make patients well. It simply postpones their deaths.
“Yes, it keeps us alive, but this is not what living should be like,” wrote Bill “Epoman” Halcomb, the founder of the patient community at IHateDialysis.com. (Halcomb died in March 2007, after 13 years on dialysis. He was 34.) Dialysis patients typically spend three or four hours hooked up to a machine, three days a week, making work, school, or travel extremely difficult. “Tuesday, Thursday, and Saturdays I show up around 4:15 in the morning, and I’m on the machine by about 4:30 or so. It’s about 8:00 or 8:15 when I’m out of there,” Henry David, a 60-year-old Los Angeles business owner, explained to me in February. Why start well before dawn? “It’s my choice, because I want to have something of a life.”
The Hils wanted more than “something of a life” for their little girl, who turned out to have a rare genetic disorder called familial juvenile nephronophthisis, which causes the kidneys to develop incapacitating cysts. It has no cure, but one treatment can solve the problem for years, even decades: a kidney transplant.
Unlike dialysis patients, transplant recipients can live normal lives, with few restrictions besides the need for immunosuppressant drugs. Since getting a transplant in late May, David says, “I can eat anything I want to eat. I’ll be able to travel. I don’t need a nap every day. There’s no comparison.” Despite the high price of drugs, transplants overall cost less money—a lot less money—than long-term dialysis.
You might think that such a superior treatment would be standard. But kidneys are hard to come by. In the United States, more than 80,000 people are on the official waiting list, all hoping that someone will die in just the right circumstances and bequeath them the “gift of life.” Last year, only 16,517 got transplants: 10,550 with the cadaver organs allocated through the list, and 5,967 from living donors. More than 4,000 on the list, or about 11 a day, died. And the list gets longer every year.
For those who survive long enough to get transplants, the wait routinely lasts years. The odds are particularly bad in large cities. Take the nation’s largest transplant center, the University of California, San Francisco. In 2008, its surgeons did an impressive 347 kidney transplants, including 231 with organs from deceased donors. But 5,271 people are on UCSF’s waiting list—meaning that, relying entirely on deceased donors, they would expect to wait an average of almost 23 years. If, like Steve Jobs, who recently got a liver transplant in Memphis, you can travel great distances on short notice, you can register all over the country. But few kidney patients are that flexible. They wait, they get sicker, and, too often, they die.
With 300 million people in the United States, the numbers shouldn’t be so daunting. Eighty thousand people wouldn’t even fill the Rose Bowl. Surely we could find enough kidney donors to end the list. But solving that problem demands creativity, daring, and, above all, a sense of urgency—a radical break with the fatalism fostered by dialysis culture. Kidney patients ought to command the kind of outrage that demanded a cure for AIDS. The list doesn’t have to exist. It is a result not of medical necessity or economic constraints but of public ignorance, conscious policy, and complacent institutions. Too many people are suffering unnecessarily.
To end the list, we first have to give up the idea that “organ donor” means someone dead. Deceased donors are, of course, essential for hearts. But not for kidneys. And not enough people die in exactly the right way to meet the need for kidneys. The best estimate is that there are between 10,500 and 13,800 brain-dead potential organ donors each year. More than half already become donors, and not all their kidneys can be used. If every single person who died the right way became an organ donor, an optimistic estimate would be that 7,000 more kidneys a year would be available for transplant. Since the list is now increasing by 6,000 a year, that would be enough to end it—in 80 years.
And even those numbers understate the problem. Though the list is inflated with “inactive” patients who aren’t healthy enough for transplants at the moment but don’t want to lose their place in line, it does not include a host of others who would be good transplant candidates right away—nearly another 80,000, estimates a study published last year in the American Journal of Transplantation. “The potential need for kidneys is a lot greater than the waiting list itself,” says Arthur Matas, the director of the renal-transplant service at the University of Minnesota Medical School and a past president of the American Society of Transplant Surgeons.