06.19b. Racial Discrimination in Kidney Transplants. On June 18 I reported on how an aborigine criminal in Australia received a lower sentence because of his race. A different odd sort of racial discrimination is going on in America: the rules for who gets kidney transplants are being designed to give blacks an edge they would not have if no racial lobbying was at work. A June 18, 2004 WSJ article was titled: "In Kidney Quest, New Rules Boost Chances for Blacks; Reform Seeks to Close Gap In Transplant Wait Times; Worries About a Downside" , but it could as easily have been titled, "In Kidney Quest, New Rules Suppress Chances for Whites and Asians; Politically-Motivated Regulations Seeks to Close Gap In Transplant Wait Times; Unnecessary Deaths Will Result".

The issue is who gets priority in the waiting lines for kidneys donated by auto accident victims. This is determined by a formula whose two biggest items are how many years you have been waiting and how good the tissue match is (which matters to how likely the transplant is to succeed rather than be wasted). It used to be that a good match was as important as waiting 7 years; now it is as important as waiting 2 years.

In itself, this rule change is not obviously wrong-- some tradeoff between years waiting and likelihood of success is reasonable if we are to use a centralized, bureaucratic formula system like this. What is striking, though, is that the motivation for the change seems to be nakedly racial. Blacks do badly when success of transplant counts more, because they make up 35% of the people waiting and get 18% of the transplants but donate only 13% of kidneys, and race is correlated with the success of the match.

If one was going to a purely racial system, of course, blacks would get less than they do currently-- they donate 13% of kidneys but get 18%. This is about power, though, not even just about thinking in terms of racial equality. From the WSJ article, it seems to be quite open that the rule change was racially motivated. I would think this would make it illegal, even though the rule change itself is not nakedly racial. Compare the rule change to a public high school that requires all of its teachers to speak French. That requirement is not by itself discriminatory or illegal. If the school says, though, "We are getting too many qualified black applicants, so we are imposing the French requirement so more of our teachers will be white," that school district will get hit with a lawsuit immediately.

Here are some excerpts from the WSJ journal story, not listed in the order they are in the article. First, some figures:

Although racial disparity is a major concern everywhere in health care, it has drawn special attention in kidney transplants. Blacks have a rate of kidney disease that is four times that of whites and make up 37% of the dialysis population. Yet they received only 18% of the transplants in 2001, according to the latest federal figures. The gap can't be explained by differences in ability to pay: Everyone with kidney failure is eligible for transplant coverage under Medicare.


Of the 58,432 Americans on the national waiting list for kidneys, 35% are black. The median waiting time for blacks -- defined as the time it takes half of those who signed up to get a kidney -- is 4.7 years, compared with about 2.2 years for whites, according to figures for people who got on the list in 1998.


Today blacks make up 12% of the population but donate 13% of kidneys nationally, up from 9.5% in 1988.

Second, the unhidden racial motivation and the increased chance of transplant failure:

Concerned by the long wait, the federal contractor in charge of distributing kidneys has changed the rules to move blacks up the waiting list. But some fear that the new rules, which reduce the emphasis on matching a kidney to its recipient, could lead to higher rejection rates and the waste of scarce kidneys.


In the first eight months after last year's policy change, 2,213 kidneys were transplanted into minorities, mainly blacks, up 9.7% from the prior eight months, according to data presented last month at the American Transplantation Congress in Boston. Meanwhile, 5.5% fewer whites received transplants. Researchers believe the initial results may have been skewed somewhat by a backlog of blacks who had been waiting a long time. But they still expect a significant long-term benefit for blacks.

What no one knows is how many additional organs will be wasted under the new system. Already, 10% of kidneys are rejected by recipients' immune systems in the first year. A study with data on 71,595 patients, published in February in the New England Journal of Medicine, predicts that 2% more kidneys will be rejected due to the change -- a level that policy makers considered an acceptable trade-off.


Surveys show blacks tend to be less enthusiastic about transplants. Even when they're eager, blacks have more trouble getting on the waiting list because they have higher rates of obesity, high blood pressure and diabetes. That means they're more likely to be judged too sick for a transplant operation. Healthy blacks are also less likely to be referred to the transplant list and, once referred, 44% less likely to complete all the steps to get on it. Many blacks say one reason for these statistics is racial bias -- conscious or unconscious -- including white doctors who fail to guide black patients through the long process.

"Everybody should have a fair shot of getting an organ," says Carlton Young, an African- American kidney transplant surgeon at the University of Alabama in Birmingham. "It's a civil-rights issue."

The kidney waiting list covers organs taken from dead donors such as people who were killed in car accidents. That's the most common kind used in transplants. An alternative, growing in popularity, is to get a kidney privately from a living relative or friend. But blacks get disproportionately fewer of these kidneys, too. High blood pressure is again a problem: It sometimes rules out African-Americans as live donors because the operation to remove a kidney would be too risky. And blacks are less likely to ask family members for a donation, researchers say, although it's not clear why.

To help blacks and other minorities, United Network for Organ Sharing, the nonprofit federal contractor that allocates organs from cadavers, has begun rejiggering the waiting-list rules.

The waiting list isn't strictly a first-come, first-served system. The rules emphasize avoiding rejections so as to put scarce organs to the best possible use. But most of the donors are white. Due to innate genetic differences, blacks are more likely to reject kidneys from a white donor than a white recipient would.

When a kidney becomes available, it is tested for six proteins involved in the body's immune response. UNOS compares the results with a database of everyone on the waiting list. If anyone is a perfect match on all six, that person automatically gets the kidney. In the case of more than one perfect match, blood type and body size usually break the tie. This is a longtime rule that isn't changing.

But for 85% of kidneys, there are no perfect matches. Then a point system takes effect, giving people credit for a variety of factors. In this screen, only the two proteins judged to be most important are counted, and each counts one point. Children under 11 get four points. So do people who have donated an organ before. Each year on the waiting list counts for another point. The person with the most points in their local area gets the kidney.

This process has changed significantly in recent years to make matching proteins less important, as antirejection drugs made compatibility a less critical issue. Twice -- in 1995 and May 2003 -- UNOS changed the scoring system, ultimately reducing the number of points available for partial protein matching to two points from seven. The result is a boost for blacks, who on average are less compatible with organs from white donors but have more points for waiting time.

Another proposal, which will soon be tested in several regions of the U.S., is being hotly debated. It would backdate all patients' waiting time to the date they began dialysis. Overall this would aid blacks, who sign up for the transplant list an average of five months later than whites. "This would be the blow which would finally give us equity," says Clive Callender, a Howard University kidney transplant surgeon.


Blacks may be more likely to fall victim to the practices of dialysis centers, which take in some $30,000 a year for each patient and have a disincentive to refer patients for transplant. Federal law requires the centers to inform patients about the possibility of transplantation, but some centers discourage patients by not presenting the idea in a positive light, says Brenda Dyson, president of the American Association of Kidney Patients.


As they decide whom to recommend for transplant, some doctors may be influenced by the fact that only 57% of organs are functioning in blacks five years after transplant, compared with 69% in whites, according to government data. The reasons aren't fully understood. It may have something to do with differences in the immune systems of blacks and whites, and with adherence to the complicated post-transplant regimen, which requires taking many drugs and seeing doctors immediately when complications arise.

There's another rule change which also seems to be racially motivated but which is getting more opposition--I'll explain my guess as to why, below.

To level the playing field, Los Angeles surgeon Gabriel Danovitch proposed in 2002 that everyone's waiting time should be counted from the date he or she started dialysis.


Many felt the change would reward lazy patients of any race -- or worse, those who had been kept off the waiting list at first because they were judged "noncompliant" with doctors' directions. For example, a patient who shows up late for dialysis treatments might be kept off the list on the theory that he'd be unlikely to take care of his kidney once he got a transplant.


In November, UNOS's patient committee, which includes patients, donors, donor families and patient advocates, rejected Dr. Danovitch's idea in a 16-0 vote that included its two black members. The committee feared organs would go to patients who would take poor care of them. "We cannot afford to waste a single organ," says the committee's chairwoman, Deborah Surlas, who received a kidney-pancreas transplant in 1993.

Ms. Surlas was angered by the possibility that formerly noncompliant patients could "walk in with all this waiting time and jump ahead" of patients who were compliant all along. Some committed patients, she points out, spend years carrying beepers and not traveling in case a compatible kidney shows up and they need to go for a transplant right away.

Opposition to Dr. Danovitch's proposal was so strong that UNOS's governing board didn't bring it to a vote. But in November 2003, the board approved a test program, under which any region can implement the policy for three years so long as it studies its consequences. So far, Los Angeles and the state of Michigan have tentatively decided to give the idea a try and several other regions may follow suit.

I think this change created more opposition because existing patients are, by definition, people who are on the waitlist, and so tend to like rules that give an advantage to someone who has been waiting longer. The person with an easy perfect tissue match isn't going to be on the waitlist long, and hence won't be lobbying very long. He will, however, not want to push other people ahead if they did not take the trouble he did to get onto the waitlist early.

The real problem is the centralized bureaucratic formula system. It takes no account of the patient's willingness to pay or of his value to society in any way except for having been an organ donor-- which must affect only a trivial (nonzero even?) number of cases. In particular, it is an outrage that Medicaid patients, whose care is paid for as charity by the taxpayer, should not be at the absolute end of the line. Not only is the taxpayer who need a kidney donation paying for the pauper who needs one-- the pauper is taking the kidney the taxpayer needs!

A better system would be to auction off the kidneys, with Medicaid patients getting any left over. Also, anyone who gets a friend or relative to donate should be rewarded by his insurance company with a cash payment, since he has saved the company the cost of the kidney. The amount an insurance company is willing to bid would be part of the policy, just like the amount the insurance company is willing to pay for doctors, and the insured patient could supplement that amount with extra payments from his own funds if he wanted to. If some deserving poor person couldn't pay, he could try to persuade other people to help him on the basis of his merits, rather than forcing them to pay taxes regardless of whether he was a drug dealer or a saint. And if someone wanted to pay for a kidney that was not a good tissue match and would probably be rejected, that would be his risk to take.

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