A few weeks ago, the Washington Post broke the dramatic medical news that as many as one third of all people waiting for an organ transplant are actually ineligible to receive one. Could this mean that the shortage of kidneys, livers, hearts, and lungs is not as dire as we thought?
Unfortunately, no. If anything, the fact that many patients are ineligible is a sign of urgency, not a reason to be complacent.
According to the United Network for Organ Sharing (UNOS), the entity that maintains the waiting list under a monopoly contract with the Department of Health and Human Services, there are 98,517 people — transplant candidates — waiting for an organ. By summer, the queue will reach a daunting 100,000, with three quarters seeking kidneys.
Are these numbers just “propaganda” meant to generate a false sense of crisis?
Yes, according to Donna Luebke, a nurse, and former member of the UNOS board of directors. “The list is what they use for propaganda,” she told the Post. “It’s the marketing tool. It’s always: ‘The waiting list. The waiting list. The growing waiting list . . . It’s what they use to argue that we need more organs. It’s dishonest.”
Luebke believes the numbers are hyped. In truth, the organ shortage is every bit as dire as it has been portrayed — even worse.
Strikingly, most patients who are designated by their physicians as ineligible for immediate transplant were once fit enough to receive an organ. Tragically, they deteriorated during the years-long wait and became too sick to transplant. And over 6,400 died last year (over two-thirds of them patients awaiting a kidney), unable to hold out for what would have been a life-saving organ.
In some regions of California, for example, where the waiting time is so protracted, physicians assume most patients will not survive long enough to receive a renal transplant. So they put every referral on the list and then when the candidate gets near the top they do the evaluation — thus, they do not “waste” their time doing evaluations on people who will die while waiting.
Another reason physicians deem patients ineligible is because they developed a reversible condition, such as infection, which make them too fragile for surgery or the anti-rejection medications that protect the new organ.
Indeed, the shortage itself is the very reason that doctors keep these “ineligible” patients on the list. If the meter were totally reset — by removing temporarily ill candidates from the list altogether — they lose all their accumulated time and would probably not survive a new wait after becoming healthy enough for transplantation. Let’s be clear: being ineligible on the list does not affect whether or not the active people get transplanted.
We cannot afford to lose sight of the reason the list exists in the first place: a desperate scarcity. If organs weren’t so hard to find, there would be no list at all or only a short one. In all of American medicine transplantation is the only treatment that is rationed by supply. With an ample pool of organs, patients would receive kidneys, livers, hearts, and lungs with the same routine efficiency as people with broken legs get them set.
In fact, the waiting time to renal transplantation is getting longer. Today is it five to eight years in major cities and by 2010 it will be ten years for some patients. With about one in three waitlisted patients on dialysis not surviving beyond five years, the majority of candidates just don’t have that kind of time.
This very trend is potent evidence why those who say the need is not so pressing are dead wrong. If the list had so many ineligible patients, then time-to-transplantation would be getting shorter not longer.
Finally, the waitlist doesn’t even reflect the full scope of the problem. A 2008 study in the American Journal of Transplantation estimates that over 130,000 dialysis patients with a “good prognosis” (defined as an expected five-year survival or longer on dialysis) are never even referred for transplantation. These voiceless thousands don’t show up on anybody’s “list.”
Nonetheless, there are concerns about crying wolf. “It’s unfair. It’s simply unacceptable,” Arthur Caplan, a bioethicist at the University of Pennsylvania’s School of Medicine told ABC News. “You can’t have one-third of the list out there that doesn’t really belong . . . you can’t inflate the numbers.”
Inflation? The real deception is suggesting that the organ shortage is a manufactured crisis.
– Sally Satel is a resident scholar at the American Enterprise Institute. Benjamin Hippen is a nephrologist and member of UNOS ethics committee.