Organ network reviews kidney allocation policies

As stories regarding the lengths to which desperate patients will go to get an organ continue to grab headlines, the United Network for Organ Sharing has started a top-to-bottom review of its deceased donor kidney allocation policies with the stated purpose of creating a more rational system.

Although the system strives to be fair, officials acknowledge disparities based on blood type and geography. Those are just two of the issues they must hammer out along with making more precise decisions in balancing justice -- which looks at how long a person has been on the waiting list -- and utility -- which seeks to make the best use of scarce resources.

"Everything's on the table," said UNOS Ethics Committee Chair Mark D. Fox, MD, PhD, a physician ethicist at the University of Oklahoma College of Medicine in Tulsa. "We're trying to look at every aspect of this. There are so many factors to balance."

Dr. Fox met with other physicians and UNOS officials in Chicago March 11 to hear from patients who had received kidneys and from those still on the waiting list.

The patients gave powerful and sometimes emotional testimony. UNOS Kidney Allocation Review Subcommittee Chair Mark Stegall, MD, said the patients' statements would be weighed when making any changes to the system.

He added that it was possible to absorb the emotional testimony and still come out with a rational system that balances the highly charged issues of quality versus quantity of life.

"You really care about what happens to individual patients, and we never forget why we're in this business," said Dr. Stegall, a transplant surgeon at the Mayo Clinic in Rochester, Minn. "But we know there are 60,000 stories out there, and we have to find the best way to help them. You can get passionate about that."

He added that primary care physicians have "two giant roles" in this equation. One is to spread the word that transplant is becoming a more viable option for patients on dialysis. The other is that they are considered partners in taking care of patients before and after transplants.

At the hearing, patients told the panel stories about receiving misinformation from doctors, being discriminated against because of health status, race or ethnicity, and of the misery of dialysis three times a week.

"End-stage renal disease sucks!" said a Chicago-area woman when asked which was more important: quality or quantity of life. "We want both. We want your life."

UNOS asked that the patients' names be kept out of any news reports, but the patients themselves told intimate details of their struggles.

A 57-year-old, San Francisco-area man said he felt discriminated against because he is HIV positive. A panel member told him he originally could have been denied a kidney because of concern that the drugs he would have to take to suppress his immune system might cause more harm.

"I was told the transplant might kill me, but I was dying anyway," the man replied. He said he believed his assertiveness was the only reason he ever received a kidney transplant.

A 35-year-old California woman told how she's been on the waiting list for four years, even though her brother has the same blood type and is a willing kidney donor. She said he lives in El Salvador and has had difficulty getting into the United States for the operation. It was noted that this complaint is more common since the Sept. 11, 2001, terrorist attacks.

Regional disparities also were addressed. Some speakers called for a national allocation system to lessen the waiting times that exist on the East and West coasts. But others said this might be lead to an unfair situation in which high-donating regions have to subsidize those areas where organ donation is less common.

There was also disagreement for allocating kidneys to the sickest patients first, as some said this penalizes people who take steps to protect their health by keeping their blood pressure down. Panel members said they would try to explore whether it should give a kidney to a person who might use it for 15 years or to a person whose life expectancy is unknown.

There was even discussion about whether it was fair to allocate kidneys to patients who are the best genetic matches. Although it was said this provides for 15% to 25% better kidney function and duration, it also is based on the "randomness of genetics" and leads to some patients having shorter waiting times than others.

The only policy everyone seemed to agree on was giving children priority, because of how a lack of kidney function could lead to other health problems as young bodies develop.

Future hearings are set for April 22 and May 10 in Chicago. After that, Dr. Fox said, the subcommittee will start to develop policy based on information it has gathered.

Robert Sade, MD, a member of the AMA Council on Ethical and Judicial Affairs and a former member of the UNOS ethics committee, did not attend the hearing but praised UNOS for its thoroughness.

"We applaud UNOS for its open process of considering these very complex allocation issues," Dr. Sade said. "Examining it as one piece makes a lot of sense and could avert some of the inequities that may arise when a system as complex as this is built piecemeal."