April 3, 2008 — -- Last year a patient at Boston's renowned Beth Israel Deaconess Medical Center was sick enough to be at the top of a liver donation list, but conscious enough to calculate his risks of dying.
When a liver became available, it came with a catch. The donor had a history of risky sexual behavior and the organ could give the middle-aged recipient hepatitis — or worse, HIV/AIDS.
"The patient was not in the ICU and was able to answer questions, but it took him several conversations for him to make up his mind," said Kimberly Sullivan, his nurse and transplant coordinator.
"It depends on what might be transmitted," she said. "But if you look at it from the perspective of a dying patient, would he rather die or have a small chance of developing something like hepatitis B? Most patients take the organ and a chance at life."
More patients and their doctors are struggling with this dilemma as policies for using "high-risk" organs — those that might carry infectious diseases like HIV or undetected cancers — are shifting, according to transplant experts.
Because of the dire need for donated organs, a growing number of the sickest patients are taking the gamble. Though doctors say the risk of later developing an infectious disease or cancer is rare, it does happen, and the consequences can be tragic.
Just this week, Stony Brook University Medical Center in New York revealed that an organ donor, who had been misdiagnosed with bacterial meningitis, had actually suffered from a deadly cancer. His liver and pancreas were transplanted in two people who later developed the same lymphoma and died. Two kidney recipients had the organ removed and were undergoing chemotherapy, the hospital said.
Last year, four Chicago organ transplant recipients got HIV and hepatitis C from a donor who was considered at high risk of carrying the diseases. And in 2004 and 2005, both rabies and West Nile infections were transmitted to transplant patients via donated organs.
The incidents have prompted hospitals across the country to revisit their policies. At New York University Medical Center, where two of the cancer victim's organs were transplanted, stronger proof of bacterial meningitis status is required before a deceased patient can be considered an organ donor. The University of Minnesota, which transplanted the pancreas, has made a similar policy change.
The United Network for Organ Sharing (UNOS), the nonprofit organization responsible for coordinating all organ transplants in the United States, bans the use of an HIV-infected organ or one with acutely spreading cancer or some severe infections.
UNOS only requires a medical assessment of the donor organ, but because the need is so great, it does not prohibit organs from donors with a history of cancer or risky sexual behavior.
As of this week, 98,713 Americans were on the national wait list for organ transplants, according to UNOS. Only 28,354 of them received transplants last year from 14,395 donors. More than 6,000 patients die each year waiting for donor organs.
Today, a blood donor is banned from giving blood just on the basis of their sexual orientation for fear of spreading HIV/AIDS, but an transplant doctors accept organs from donors who have worked as prostitutes or have a history of injecting drugs.
Blood banks are so wary that they ask people who have had any organ or tissue transplant to wait 12 months before giving blood. After the mad cow scare of the 1990s, Americans who have lived in some European countries for only a year are banned as blood donors.
"The risks of transmission are approximately the same, and the tests that are applied to donated blood are, with respect to some diseases, actually more accurate than those used for organ donations," said Dr. James AuBuchon, professor of pathology at Dartmouth University's Hitchcock Medical Center in New Hampshire.
But, the guidelines for accepting organs is not as "codified" as for blood donations, according to AuBuchon, who serves on the board of the American Association of Blood Banks.
"The difference is the supply," he said. "Although we are frequently tight in our blood supply, there is the perception that we can find what we need despite the very strict health screening and testing requirements."
In organ transplants, the risk comes because some infections, like HIV/AIDS or rabies, can lie dormant. A donor organ can test negative, but disease can still develop up to a year later.
"The system does everything reasonable to prevent disease transmission," Dr. Vivian Tellis, head of the kidney transplant program at Montefiore Medical Center in New York, told ABCNews.com.
But critics say transplant hospitals have varying policies on informing patients about high-risk organs and — according to federal regulations — have no obligation to even tell the potential recipient.
"The issue is who should be making these policies – UNOS or the local transplant center?" asked Dr. Scott Johnson, surgical director of renal transplants at Beth Israel.
UNOS has recently written new regulations that require hospitals to obtain signed consent when using high-risk organs, and those policies are currently available for public comment.
Johnson estimates that about 5 percent of donated organs nationwide fall into the high-risk category. Most times, the risk of potential disease transmission is far outweighed by numbers of lives saved.
"It's about risk versus benefit," he said. "If you're sick in the ICU and you don't get an organ, you are going to die. You have to make a decision about what is available."
The "key component," according to Scott, is informed consent to ensure that organ recipients, their families or proxies understand the odds. But those risks are relative when a patient is clinging to life.
Once death has occurred, there is a finite amount of time before irreversible damage occurs in the organs, and the decision to go ahead with a transplant must be made quickly.
"It's up to the doctor to help the individual understand what the risk is, but sometimes even we don't even understand the risk," he said.
But Joan McGregor, a bioethicist from Arizona State University, says that organ donation networks are much more "closed" about their procedures than the national blood banks.
"The blood system went through some very public disasters with kids with hemophilia getting HIV and hepatitis from blood," she said, "My sense is that there should be more national regulations of the screening and the informed consent processes."
McGregor's concern is for the sickest of patients — those who may be in a "weakened state" waiting for a transplant — who may not be capable of making an informed decision about the risk of later developing a disease.
"People need to know what they are getting into," she said.
Transplant surgeon Johnson agrees that the average patient may not have a "sophisticated" medical background and relies on the doctor to assess potential risks. That, too, can be problematic.
"You impose your own bias on them and force them into a decision that may not be right for them," Johnson said.
"It's a really hard decision what to do with the poor guy in the ICU on a breathing machine hours away from death's door," he said. "An organ comes up and you talk to the family and make a decision, and the guy wakes up and we tell him we gave him a high-risk organ, and he says he didn't want it."
Still, Johnson argues those risks are relatively small. "Most patients who get organ transplants die of natural causes," he said. "The organs are out-living the patients."