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.
Hickey is quick to point out that he is not against the excellent work done by transplant physicians. After all, he is alive today because of one. What he's upset about are the inefficiencies in the current bureaucracy. He wants a more transparent system with greater accountability—a system in which fees and inefficiencies and conflicts of interest are brought to light, in which more centers are willing to accept directed donor transplants by altruistic strangers, and, most important, in which UNOS is no longer in charge.
To this end, he has been in contact with Senator Chuck Hagel and Congressmen Henry Waxman and Mark Udall, trying to get a congressional hearing to look into the perceived UNOS inefficiencies. His goal? "To get UNOS shut down," says Hickey.
Let's say, for the sake of argument, that the national system improves and becomes the efficient, transparent, conflict-free organization Hickey envisions. That still wouldn't begin to address the single biggest issue faced by the transplant community, and that is the severe shortage of available cadaver organs. This shortage is why Hickey is still doing whatever he can to convince more transplant centers to consider altruistic living donors, regardless of how the donor and recipient meet.
How much Hickey has been an influence is difficult to say, but more and more transplant centers are coming around to the idea. The three local transplant centers have all changed their policies, including Presbyterian/St. Luke's and the University of Colorado Hospital, which is remarkable given that Dr. Kam, the physician who initially refused Hickey's surgery, conducts transplants at both hospitals. "We now consider these cases on a case-by-case basis," Kam says. "If it is an acceptable match, if the donor passes psychological and medical examinations, and we're convinced there is no exchange of money, we will consider it."
Still, the number of Internet-arranged organ donations forms just a tiny percentage of the overall number of transplants performed each year. Since Hickey's transplant, MatchingDonors.com has helped facilitate 86 organ donations—Hickey has been personally involved with 16 of them—and more than 40 others are in the works. The small number is not for lack of willing donors. MatchingDonors.com currently has 356 people seeking organs through its website, but an astonishing 5,150 individuals have signed on as potential donors. The reason more transplants have not taken place is that finding medically compatible matches takes time.
Because 18 people die each day in this country waiting for organs, obviously something else needs to be done to boost the nation's organ supply.
So here's the irony of it all. The reason many physicians have refused to conduct Internet-arranged transplants between strangers is because of the fear of money changing hands. But Dr. Kam, Robert Hickey, and members of UNOS's own ethics committee all agree that money is exactly what's needed to boost the nation's supply of available cadaver organs. Not money as in writing a check to donors. Instead, the one thing they agree on is that the United States needs to begin thinking about a system in which people are incentivized to donate their organs through such things as contributions to a retirement program, college education fund, or health insurance plan. A UNOS committee is currently investigating the feasibility of offering incentives to families of cadaver donors, but they expect that incentivizing living donors is the next step.
Three years ago, Bob Hickey and his wife, Sally, scaled down their lifestyle and moved west from the hubbub of Beaver Creek to much-quieter Eagle. Today, he lives in a new housing development in a Craftsman-inspired home with a broad and inviting front porch. Sitting inside his tidy office, which smells like vanilla thanks to a scented candle burning nearby, Hickey reflects about how his life has changed since the transplant.
Today, he doesn't care as much about fancy dinners in Vail. He'd rather sit on his back patio with a glass of cognac and stare at New York Mountain. He doesn't fly anymore, because the anti-rejection drugs he's on have caused Type II diabetes. He does, however, see his grandchildren and neighbors often, and he remains in regular contact with Rob Smitty. Hickey and Smitty, to this day, consider each other close friends.
Mostly what he does is work with kidney patients. Leaning back in his chair, hands clasped behind his thinning gray hair, Hickey says he spends about 25 hours a week on transplant-related issues. He's currently helping 10 people connect with donors, talk to doctors, negotiate fees with hospitals, raise funds for transplant costs, and otherwise navigate through the system. "I thought all the trouble I got into was because of my own stupidity," he says. "Then I realized that no one told me the rules of the game." That's why he's so willing to shine a light for others. "Every time someone gets a transplant, I feel like I've succeeded."
Hickey cries easily when he reflects on the long, painful months leading up to his decision to end his life. He raises his shirtsleeve to reveal the scars in his left arm from the dialysis lines. But it's clear the past is not where he wishes to dwell. He'd rather talk about how invigorated he gets challenging the system, and how grateful he is that he can return, in some small way, the gift Rob Smitty gave him on October 20, 2004.
Hickey is not a religious man. But it's not much of a stretch to look at his life, a life spent helping others in one way or another, and believe in some kind of karmic destiny. When Smitty and Hickey met in Denver four years ago, it was a meeting of altruists—one of them giving life so the other could go on giving.