Kidney allocation changes urged to cut disparities

African-Americans are less likely to be referred for a transplant and wait longer for a kidney once they're referred.

By Andis Robeznieks — Posted April 25, 2005

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Saying that a rare opportunity exists where "David can slay Goliath," surgeon Clive O. Callender, MD, is promoting a plan he believes will eliminate racial disparities in the nation's kidney transplant allocation system.

As the United Network for Organ Sharing goes through a top-to-bottom evaluation of its kidney allocation process, Dr. Callender, an African-American, is asking that it reconsider a proposal that the UNOS board rejected in November 2003: That patients are placed on the waiting list as soon as chronic maintenance dialysis starts.

UNOS has formed a Kidney Allocation Review Subcommittee that has stated that "everything is on the table" as it tries to find the perfect balance between giving everyone an equal chance at getting a kidney and making the best use of the kidneys available.

"That's the reason I'm here today," Dr. Callender told the panel at a March 11 public hearing. "Because you do listen and you are open to change."

Experts believe it's time to reassess how kidneys are allocated because there have been anti-rejection drug improvements and it is not as important to have a perfect match in order to perform a successful transplant.

Officials are trying to address acknowledged disparities based on blood type and geography, and to settle disagreements on basic issues such as allocating kidneys to the sickest patients first.

Some in the transplant community said allocating kidneys to the sickest patients first penalizes people who take steps to protect their health.

UNOS Ethics Committee chair, Mark D. Fox, MD, PhD, said he believed Dr. Callender's request was worth exploring again because it is theoretically sound and "patient- focused."

The complicated UNOS kidney allocation algorithm now in place includes a point system that accounts for issues such as antigen matching, geographic considerations and time on the waiting list.

But placement on the waiting list may be affected by the timeliness of a patient's evaluation and referral to a transplant center. And these actions may be impacted by a patient's education, financial situation or ability to navigate the health care system.

UNOS's goals are to match donated kidneys with patients for whom they will do the most good, to have a fair allocation system, and to minimize the discarding of kidneys that could have been transplanted, said Dr. Fox, a physician ethicist at the University of Oklahoma College of Medicine in Tulsa.

"The goal is to not penalize patients for issues that are out of their control."

Eliminating penalties

Speaking before the UNOS panel, Dr. Callender said it's time that the potential penalties be eliminated. He said putting patients on the kidney transplant waiting list when chronic maintenance dialysis begins would be a "magic bullet." in the fight to overcome disparities caused by subconscious "institutionalized racism."

Dr. Callender, the founder of the Washington, D.C.-based National Minority Organ Tissue Transplant Education Program, wrote about disparities in care in the May-June 2004 Seminars in Dialysis. In that report, he cited studies that indicate African-Americans are less likely to be evaluated and referred for transplantation, and -- once evaluated -- have significantly longer waiting times to receive a kidney.

"The longer you wait, the greater the likelihood of having a graft failure," he said. "If your time on the waiting list begins when you're permanently placed on dialysis, it would level the playing field for people of color."

Kidney transplantation is particularly important to the African-American community because more than one-third of those on the U.S. kidney waiting list are African-American -- even though they account for only 12% of the nation's population. Higher hypertension and diabetes rates in the African-American community are believed to contribute to that statistic.

Some changes addressing drug improvements were made in May 2003, and these are believed to have resulted in greater access to kidney transplants for minority patients, but conclusive numbers are not yet available.

While "understanding the spirit" of Dr. Callender's request, Dr. Fox said UNOS may need more time to study potential unintended consequences of a policy change.

Robert Sade, MD, a member of the American Medical Association's Council on Ethical and Judicial Affairs and a former member of the UNOS Ethics Committee, said one of those unintended consequences could turn out to be a higher rate of failure with transplanted kidneys because of less-controlled matching.

Dr. Callender said he is conscious of that argument. "That hypothesis has been raised before and I would like to test that hypothesis," he said.

Dr. Sade said that Dr. Callender's request was "not unreasonable," and that one of the advantages to making the change is that it would make it more difficult for anyone to "game the system."

"Using the criteria they now use, it's possible to game the system by naming patients to the list as soon as they walk in the door," Dr. Sade said.

But he said other factors besides waiting time would have to be addressed in order for disparities to be eliminated.

"Disparities suggest that there are differences in the levels of care that give rise to different outcomes and, in kidney transplantation, it's been noted that African-Americans are not entered onto the waiting list at a higher rate than whites," Dr. Sade said. "I think this change would have a substantial effect on disparities in kidney transplantation, but it wouldn't fix the problem entirely because part of the problem is entrance to the system.

"If they are not on the waiting list, they aren't going to get a kidney," he added.

Some also have suggested that using the term "institutionalized racism" may dampen enthusiasm for making the change he's requesting. Dr. Callender disagrees.

"That's how I see it, so that's how I call it," he said.

"Even some people of color are afraid that it will get people angry, but I don't hesitate to use it because it's applicable. If you want things to change, you have to make people uncomfortable with the status quo," Dr. Callender said.

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Disparities and dialysis

African-Americans with kidney failure are less likely to be referred to an organ transplant center and more likely to wait before being placed on kidney transplant lists, compared with whites. Clive O. Callender, MD, founder of the National Minority Organ and Tissue Transplant Education Program, believes that putting people on the waiting list as soon as they start dialysis would help eliminate the disparity.

Referral rates
to transplant center
Placement on waiting
list within 18 months
of starting dialysis
Black women 50.4% 31.3%
White women 70.5% 56.5%
Black men 53.9% 35.3%
White men 76.2% 60.6%

Sources: "Seminars in Dialysis;" New England Journal of Medicine

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