The CrusaderIn 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.
By Shari Caudron
5280 Denver's Magazine - 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.
Something about Cardinale's case roused Hickey to action. A few days after being cleared for travel—just six weeks after his own transplant—he flew to New York, met with Ostrom, and together they contacted local reporters to create public awareness of her son's story. "My case was still news, and the local media outlets were interested in the story," he says. Hickey also talked with the powers that be at the hospital and laid out a simple, straightforward argument. One, there was a donor willing to give a healthy kidney to a needy recipient. Two, no money was changing hands. And three, just because the donor met the recipient on the Internet—as opposed to at church or work or through family connections—that didn't mean the relationship was any less valid. Plus, Hickey argued, shouldn't the owner of a healthy kidney who was willing to undergo surgery to give up that kidney have some say in where that organ went? "I don't think anybody should be prohibited from dictating what their preferences are," he says. "I'm not Jewish, but I have no problem if a person who is Jewish says they want their kidney to go to another Jew. I just don't see this as an ethical issue."
In the end, Buffalo General agreed with Hickey's arguments and Cardinale received his transplant. But Hickey also received something of value, and that was the knowledge that he—a regular guy from Colorado who happened to have received a lot of press attention, could be instrumental in saving lives. "If I hadn't received so much media coverage, I think I would have quietly gone back to my normal life."
A strong sense of compassion and moral duty spurred him on. A self-professed bleeding-heart liberal, Hickey has a lifetime of experience helping others. In 1964 in Toronto (Hickey was born in Canada and emigrated in 1970), he volunteered to help women at the city's first abortion clinic. This was years before abortion became a hot-button issue in the United States, and Hickey was the clinic's only male counselor. Later, when Hickey was beginning his career in substance-abuse treatment, he worked with homeless drug abusers at a free medical clinic in the Haight-Ashbury area of San Francisco. "I saw these folks needing help, many of whom were my own age," Hickey says. "Looking at them, I'd wonder, 'How come I'm here, and they are there?'" He brings the same philosophy to his work with kidney patients. He managed to live because of the generosity of a living donor. Others should be allowed to do the same.
So, in addition to working directly with patients, Hickey put himself on the speaking circuit, paying for his expenses from his own savings. He appeared on Nightline, spoke at a Harvard symposium with some of his detractors, and implored young doctors at medical conferences to consider this new altruistic form of transplantation. He also met with transplant teams at local hospitals and shared his story. In fact, he still does, and to date Hickey estimates he's directly encouraged at least 11 transplant centers to change their policies regarding altruistic stranger donation, including Porter Adventist Hospital in Denver, and that he's indirectly had an impact on several more. But this is out of a total of 253 kidney transplant programs nationwide. "It's a slow process," Hickey says. "I often feel like Don Quixote."
While compassion for other people may have lit Hickey's fire, anger has kept it burning. A few days after his transplant in October 2004, Hickey came across an article about the enormous fees collected by organ procurement organizations (OPOs), the centers responsible for recovering and distributing cadaver organs for transplant. The article, which focused on Denver-based Donor Alliance, claimed that in 2003 the organization charged an average of $19,500 in fees for recovery of a kidney, an amount that exceeded the national norm. These charges were passed on to transplant centers and eventually paid by the patient's insurance company or Medicare. In 2003, Donor Alliance took in $12.4 million in organ, tissue, and bone recovery fees. By 2006, that number had risen to more $19 million.
Hickey was shocked. Here UNOS was saying it was illegal to charge money for organs, and yet it looked like OPOs were doing just that. So he did a little digging. He reviewed the tax returns for all 58 OPOs in the United States and saw that, collectively, their income exceeded $1 billion. He began to believe that maybe people didn't want to change the existing system because there was so much money tied up in it, money that was reflected in real estate holdings and six-figure salaries paid to executives and board members. "I've run nonprofits and I know you can make money in a nonprofit: The key is not to claim it as earnings," Hickey says. "What you do is you put it into cars or real estate or bonuses. You can put lipstick on a pig, but it's still a pig."
Jennifer Moe, director of communications for Donor Alliance in Denver, says the current fee for kidney recovery is $25,000, but she says all of the organizations charges are regulated and audited by the Centers for Medicaid and Medicare Services. "They determine the standard acquisition charges, and we undergo an audit process on an annual basis," she says, adding that it costs money to recover organs for transplant and the organization has to recoup its expenses.
The fees charged for recovery represent just one item on a long list of grievances Hickey has against the existing transplant establishment. Spend a few hours with him and he'll tell you about conflicts of interest—the board members of transplant organizations are typically the same physicians who are in line to receive organs for their patients. He'll tell you about the $585 fee patients are charged by transplant centers to be placed on the national waiting list, and how, if you've got the money, you can list yourself with any number of transplant centers and improve your odds of a faster transplant, which is exactly the kind of unfair workaround the national system was designed to guard against. He'll tell you how people in certain geographic areas receive organs more quickly than others. In Colorado, for example, the median wait time for a kidney is 31 months, versus a national average of more than 40 months. This is because six out of 10 drivers in Colorado have agreed to be listed on the national organ registry, which makes us second only to Utah in the number of people willing to donate their organs. As a result, Colorado has a good supply of cadaver organs in an area with a relatively low population, thus speeding up the wait time. But this kind of inequity shouldn't happen in a system where everyone is supposed to be treated equally.
Hickey's concerns have been validated by a lengthy investigative series in the Los Angeles Times that revealed a host of holes in the national transplant system. Among other things, the series pointed out a severe lack of oversight by UNOS (48 transplant programs failed to meet federal survival standards in 2005); manipulation of the system by certain transplant centers; conflicts of interest that make oversight difficult; and lack of transparency. The latest unfavorable news came in March, when a transplant surgeon accused of illegally hastening the death of a prospective organ donor was ordered to stand trial on felony adult-abuse charges.
Members of the transplant community admit the national system is not perfect. Joel Newman, assistant director of communication for UNOS, acknowledges the current system favors people who have money to register at more than one transplant center, that there is the potential for conflicts of interest among physicians who sit on boards, and that the amount of time spent on the list is a poor indicator of who needs an organ most. However, he emphasizes that the organization is in a constant state of self-assessment to find better ways to manage the complicated task of organ allocation. In fact, UNOS has 21 national committees currently working on everything from ethics and organ availability to policy matters and patient affairs. Hickey himself routinely shows up at public-input meetings sponsored by UNOS.
Their reaction? "I'm a persona non grata," he says.
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.
http://www.5280.com/issues/2008/0810/feature.php?pageID=1343
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