The Crusader

In the United States, 18 people die each day waiting for an organ transplant—most of them waiting for kidneys. One Coloradan is trying to improve those odds by taking on nothing less than the entire transplant establishment.

October 2008

Bob Hickey was ready. In November 2003—after four and a half years on kidney dialysis, after four and a half years spent dreading the painful dialysis needles, after suffering from crushing fatigue and waiting for news of a kidney transplant that never came—he decided to end his life. The 57-year-old Hickey had once been an A-lister in Vail, someone who was invited to the best parties at the best restaurants several times a week. He'd been a private pilot, flying his beloved Beechcraft Bonanza between Colorado and Kansas, where he directed a managed-care foundation. He'd been a skier. A runner. A six-foot-four-and-a-half-inch picture of the American Dream. But all that faded into the past when he was diagnosed with kidney cancer in 1997. Though he tried to make the best of his four-times-a-week dialysis treatments, truth was they got the best of him. Ending his life, he thought, would be easier than continuing to endure it.

Hickey told his wife he was going down-valley, got into his beige Audi A6, and drove to Mountain Hospice in Edwards, where he inquired about how they might help a friend die. He'd already spoken to a doctor friend about what stopping dialysis would be like: one week feeling ill and fatigued, a second week in a coma, then death. Out of respect for his wife and four grown sons, he decided to wait until after Christmas and New Year's Eve to let them know of his plans.

When he finally told them, his wife, Sally, seemed accepting of his decision, however she did talk a friend into encouraging Hickey to give it another month. Then on Sunday, while waiting for the day he'd stop dialysis treatment, he opened the Denver Post and saw an article about a new online service called MatchingDonors.com that matched altruistic living organ donors with people looking for kidneys and other organs. Although skeptical, Hickey paid a $295 registration fee and within a month was overwhelmed by more than 4,000 e-mails from perfect strangers willing to give him one of their kidneys. After a lengthy process of elimination, Hickey ultimately chose Rob Smitty, a 32-year-old meat salesman from Chattanooga, Tennessee, to be his donor.

Hickey flew Smitty, and his family, to Denver, where the men were prepped for surgery. Then reporters got wind of the unusual arrangement, and Hickey's story exploded in the Denver media. As Hickey and Smitty lay on gurneys outside the operating room at Presbyterian/St. Luke's Medical Center, Hickey's transplant physician, Dr. Igal Kam, marched into the room, furious to have learned he was the unwitting participant in a Web-based organ transplant. Waving a newspaper in Hickey's face, Kam refused to do the surgery.

In the United States, almost 100,000 people are on the national organ transplant waiting list, and about 80 percent of them are waiting for kidneys. The list is so long because demand for kidneys, like diamonds and oil, far outstrips supply of the precious resource. Of the roughly 80,000 people needing kidneys each year, fewer than 17,000 will receive one. Many of the rest will die waiting.

But here's the thing about kidneys: Unlike other organs, which must come from deceased donors, kidneys can be donated by live human beings. After all, we've each got two of the fist-size, blood-cleaning organs, and we need only one. Because of this, people can—and do—donate kidneys to each other. Husbands give to wives. Sisters give to brothers. Best friends happily climb onto the operating table for one another. Each year, in fact, about 35 percent of kidney transplants are living donations between loved ones. But until Bob Hickey came along, no one in the United States had knowingly found an altruistic donor stranger through the Internet.

Hickey's case set off alarms throughout the transplant community. Physicians were worried about money changing hands because it's illegal in the United States to pay for human organs. Nevermind that Hickey wasn't paying for the kidney and that MatchingDonors.com makes it clear to registrants that kidney sales are forbidden. Ethicists believed then—and still do—that his case would open a floodgate of sorts, creating a situation in which people did surreptitiously pay one another for their organs. The best ethical, legal, and fair way to distribute organs from strangers, they claim, is through the national system set up by Congress in 1984 and managed, under contract, through a nonprofit organization called the United Network for Organ Sharing. UNOS manages the distribution of cadaver organs based on a combination of objective criteria, including donor-recipient compatibility and length of time spent on the national waiting list.

When people choose to bypass the national system and give their kidneys to strangers, ethicists believe objectivity and medical need get tossed out the window in favor of wholly subjective criteria, says Dr. Mark Fox, associate professor at the University of Oklahoma College of Medicine and former member of a UNOS ethics committee. "What you get are people taking out ads along the lines of, 'Hi. I'm Mark Fox. I need a kidney transplant, I'm a Catholic Democrat, a college basketball fan, I like the Cincinnati Reds, and here is a picture of me. If you think I'm cute, science be damned, medical need be damned—if there is anything personally about me you find appealing, please make your organ available.'"

Two days after Hickey's surgery was scrubbed, Dr. Kam, his physician, relented and performed the transplant. The next day, Hickey felt like his old Type A self.

In the beginning, he thought about returning to the work he loved. With a Ph.D. in clinical psychology and an emphasis in addictions medicine, Hickey had created a national reputation in narcotic addiction treatment. He'd served on a White House task force under Nixon, consulted with Indian reservations in New Mexico, taught at several universities including Rutgers, and had been—up to the time of his kidney cancer—working as CEO of the Behavioral Health Managed Care Corporation, which provides services for substance-abuse treatment and prevention, and mental health.

Fate, however, had another plan for Hickey, and that plan arrived in the form of e-mails. Thousands and thousands of them. All from people who'd heard about Hickey's case in the national media and wanted his advice about how to find willing donors and/or convince unwilling doctors to conduct the surgery they so desperately needed. Though he was still recovering from his own surgery, Hickey answered each of these letters. "Everybody deals with terminal illness differently," he says, "but the one thing they all need is someone to listen and give them hope." With such a long history in addiction counseling, soothing people came easily to Hickey.

Then, a month after his transplant, Hickey received a desperate and determined plea from a woman named Jeanette Ostrom in Jamestown, New York. Jeanette's 33-year-old son, Paul Cardinale, had suffered from kidney disease since he was born. His father had given him a kidney 10 years earlier, but now that organ was failing. Although Cardinale had found a potential donor through MatchingDonors.com, the local hospital, Buffalo General Hospital, was refusing to conduct the surgery.