Why the Campaign for Living Kidney Donation is “Bullshit” Part Two
The “terrible crisis of organ availability” is actually a public health crisis with origins in diet, lifestyle, obesity and diabetes — combined with an aging population that increasingly refuses to let go when the time comes. It’s all in how you look at it, and the transplant industry has been very successful in getting us to see the situation from their perspective. It’s time to reconsider live donation when a leading transplant surgeon tells colleagues that data on donor safety is “bullshit.”
Everyone into the Donor Pool: Part Two
Ronda would later recall exactly what she supposed to recall when thinking about that episode of Dr. Oz.
“The Dr. Oz show inspired me. I remember the way that show made me think and feel. I felt sadness and compassion for anyone that was on dialysis and in need of a kidney. I recall thinking that if this is safe to be a living kidney donor and I can still go on living a long normal healthy life, then why not step forward to save someone’s life?” she says. “I thought, why not check out what it takes to become a living kidney donor and do the match-testing for someone to save their life.”
Kidney donors are often referred to as Good Samaritans, and for Ronda, a solid believer in the tenets of Christianity, submitting oneself to become an instrument in the miraculous gift of life that is organ transplantation would be an exercise in living one’s faith.
“I was thinking that if everyone stepped forward, no one would have to die,” she says. “I thought of the people in need of a kidney transplant with great compassion and love. If this is something that is not going to harm me, I wanted to help. I told myself that I needed to find out how to become a living kidney donor.” Ronda concluded that donating a kidney would definitely be the Christian thing to do.
Then she went on her afternoon school bus run and didn’t think much more about it.
“The crisis in renal transplantation deepens each day as the number of patients on the waiting list swells,” says Robert Montgomery, trolling for donors.
But the only commodity in short supply is honest information. “This is a crisis in ethics, not numbers,” says one nephrologist. What Montgomery, whose living depends on transplanting organs, calls the terrible crisis of organ availability is actually a public health crisis with origins in diet, lifestyle, obesity and diabetes — combined with an aging population that increasingly refuses to let go when the time comes. It’s all in how you look at it, and the transplant industry has been very successful in getting us to see the situation from their perspective.
This line in a Baltimore Sun story is typical of the backward reasoning that is driving the campaign for living kidney donation: “The problem of finding healthy kidneys to replace ailing ones is growing as kidney failure mounts with accelerating rates of high blood pressure, diabetes and obesity.”
Difficulty in persuading healthy people to give up one of their kidneys is not the problem that needs to be addressed. The problem lies in finding ways to stop the accelerating rates of high blood pressure, diabetes and obesity. The problem is that we are resorting to cutting healthy organs out of healthy people in response to a difficult, long-term situation. The swelling of the waiting list is entirely manufactured, and even if it wasn’t, transferring kidneys from younger, healthier citizens to the afflicted and/or elderly is not going to solve the problem no matter how they spin it.
The facts they are trying to spin are these: Of the more than 100,000 people that Oz said were in danger of dying for the lack of a selfless donor in 2009, many were waiting for other organs like hearts, lungs, livers or corneas. There were roughly 76,000 people on the waiting list for a kidney, and about 25,000 of those people were actually on “inactive” status, meaning that for one reason or another, they couldn’t accept a donor kidney.
So there were about 50,000 eligible people waiting for a kidney, the same as every year since 2001. And that figure is not what it seems. Currently, about ten percent of those waiting are listed at multiple transplant centers, with each listing counted individually (see registration fees below). Some people aren’t healthy enough to be placed on the active list in the first place; and many are waiting for their third or fourth transplant, because, as Montgomery says, “kidneys are not like diamonds, they don’t last forever.”
The rate at which active patients were added to the list certainly didn’t indicate a looming public health calamity — it had been declining for years. You might think that a trend toward a smaller waiting list is a good thing. But the keeper of the list, the United Network for Organ Sharing (UNOS), is a private, nonprofit corporation that gets most of its management from the transplant industry and most of its $41 million budget from recipients who have to pay registration fees to get on the list. By 2003, the campaign for live donation was going so well that there were more live donors than dead ones, and recipients who brought their own donors didn’t have to wait on a list or pay any registration fees.
This, UNOS Treasurer Tom Beyersdorf told the board of directors, “has caused budget problems.”
The board unanimously approved a change in the rules requiring every recipient to register and pay, BYOD or not — despite the fact that a recipient with a living donor has no need for the national matching system which is UNOS’s raison d’etre. (The board had no statutory authority for the money grab, and they are powerless to enforce it. Taxpayers, however, through the Centers for Medicare and Medicaid, are paying it anyway.) Also, the rules were changed to allow people who became unfit for transplant to stay on the list, ostensibly so they could continue to accrue waiting time — until sometime in the hazy future when they might be well enough to accept a kidney. Some people were allowed to join the waiting list as inactive patients.
The result was a 500% increase in the number of people listed for kidney transplantation who were unable to undergo kidney transplantation, which, in addition to bolstering the budget, helped create the appearance of a dire organ shortage of epic proportion.
Montgomery wrote in a successful application for $1 million in federal grant money in 2009 that “waiting times average 5–7 years.” While there were patients who spent five years or more on the waiting list, in 2009 the average time was either 2.3, 2.8 or 3.5 years, depending on which set of numbers one chooses to interpret — and the numbers are all over the place. Data collection is very sloppy and notoriously unreliable in the transplantation business, which allows those with a vested interest in its continued expansion to be pretty selective about what figures they use.
“Remember,” says a former UNOS committee member, “this is private industry. With this crew, data is for marketing, not scientific inquiry.”
Montgomery’s assertion that a third of the people on the waiting list would die before they get a transplant is misleading in more ways than one. If all you had to go on was the information on the Oz program, you would think that every year more than 33,000 people are doomed because the rest of us are too selfish to make the effortless gift of life.
But, in 2009, according to the same data used by Montgomery, the annual death rate for those on the waiting list for a kidney had actually decreased by more 30% over the previous decade, and the number of people who died while on the list that year was around 4,600. Given the fact that half of those people were inactive,it is more likely that there were about 2,300 people whose lives might have been prolonged by a kidney transplant. And even then, you need to ask what exactly these people died from, because the cause of death was “unavailable” for about half of them. Although they most likely succumbed to heart disease or diabetes, they could have died from cigarettes or old age for all anybody knows — and, considering the ever increasing number of people over 65 and even 70 on the list, old age is not an unlikely factor.
So, tragic as it is, the only reasonable claim that Oz and Montgomery could make in 2009 was that about 1,150 people a year may be dying for lack of a donor — and there is room to question even that figure, because a study in a leading transplant center reported that “it was not possible to determine with certainty whether those who died while waiting had actually been good candidates in the year preceding their death.”
To put the Great Kidney Shortage in perspective, the Centers for Disease Control and Prevention recently reported that the hospital acquired infection Clostridium difficile will kill 29,000 Americans this year.
One Sunday morning about a month after the Oz show, Ronda listened to Herbert Cooper, Senior Pastor at People’s Church in Oklahoma City, deliver a message about miracles. The following Wednesday night she showed up at the church’s Epic Auditorium to greet students arriving for the weekly youth ministries program. Her fellow greeter was a 36 year old African American we’ll call Evan Johnson.
They’d seen each other at other church gatherings, but had never spoken. Working the doors to the auditorium that night, they struck up a conversation. The subject turned to travel, and Evan told Ronda he didn’t get around much anymore because he was on dialysis.
“When I heard the word dialysis, I remembered the Dr. Oz show and I asked Evan if that was for his kidneys, and he told me that it was.” Ronda says. “He told me how he had been on dialysis for six years and that he was on the transplant waiting list and he knew that any day now he would get the call for a kidney. He did not seem to be telling me these things to make me feel sorry for him. He spoke with great faith and strength in all that he was facing. He seemed determined not to let his circumstances keep him down.”
Listening to Evan brought back the emotional electricity of that show to Ronda; healing and prayers and the gift of life — and miracles. “I remembered how my heart was stirred to help someone,” she says. “I thought that if this is safe to do and I can live a normal life with just one kidney, why not give one away so someone does not have to die. I remembered how I had planned to check out living kidney donation but never did, and now right in front of me standing was a man in kidney failure on dialysis needing a transplant.”
And before she had time to think much more about it, Ronda said to Evan Johnson, “If I am a match, you can have one of mine.”
She says that those were her exact words, and “I don’t know who was more shocked to hear them, Evan or me. But I had spoken them and it was too late to take them back. Besides, what were the chances that I would see the Dr. OZ show that stirred compassion in me, and then one month later, meet a man in my own church who was in need of a kidney? It seemed like fate and not a coincidence at all. It seemed like God had planned this meeting and He was testing my faith. I decided to trust God and go forward with testing to see if we would be a match, to see if this was the miracle that I was supposed be part of.”
You wouldn’t think so, but spontaneously blurting out an offer to give one of your kidneys to a stranger is not an unusual phenomenon. According to studies, donors “report that they did not technically ‘decide’ to donate, but rather the desire to donate emerged automatically… The automatic response reflects motivations to either help others or act morally appropriate, or to acquiesce to familial expectations of self-sacrifice. This suggests that LDs’ [living donors] decisions are often made without being adequately informed of or comprehending the risks, benefits, procedures, alternatives and outcomes of donation.”
Rather than a practical consideration of the risks to one’s self or the real benefit to the recipient, the snap decision often springs from an innate desire to help. “Thus, the decision-making process for some can be construed as somewhat superficial in the sense that it challenges ethical presumptions that LDs undergo moral deliberation of the risks and benefits to themselves of donating.”
It turns out that some people are just built that way. Last fall, Georgetown University researchers scanned the brains of altruistic kidney donors and found that “people who donate kidneys to strangers have significantly different brain structures than those who don’t.”
After your announcement that you intend to become a kidney donor, the next step is to see if you are a match for a specific recipient, assuming you are gifting someone in particular. It is common knowledge in transplant centers that the decision is pretty much a done deal at this point in a donor’s mind, with each successive step in the process making the resolution all that more irrevocable. Ethicists and donor advocates say that donors should be made aware of exactly what they are getting into long before any testing starts.
“The donor evaluation process is actually out of order. They do the matching tests first, and once they say you are a match, you are roped in,” says a donor advocate. “This is even before they have done any medical or psychosocial evaluation. The depth of education and information depends on what the surgeon wants you to know. The independent donor advocate is not really independent, and probably follows the dictates of the surgeon.”
As surprising to herself as it was, Ronda placed her trust in God and called the transplant coordinator at St. Anthony Hospital in Oklahoma City, where the motto is “We Believe in the Power of Prayer®”.