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.
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.