George Boucher endured more than three years of dialysis waiting for a new kidney, even turning down one organ on his doctor’s advice because it came from a high-risk donor, his wife said.
But in May 2005, less than a month after the 54-year-old Rhode Island man received the long-awaited organ, Boucher was dead, felled by a rare infection that lurked undetected in the transplanted kidney.
The source? A pet hamster bought the month before the organ donor’s sudden death.
It was a diseased rodent whose virus, lymphocyticchoriomeningitis — known as LCMV — was transmitted from the donor to four people who received her organs, killing three of them. The fourth became critically ill, but survived.
Last month, that victim and the families of the others settled a two-year lawsuit against the retailer PetSmart, who they claimed failed to screen the sick hamster or to warn pet owners about potential dangers.
But Boucher’s widow, Helen Boucher, 60, of Pawtucket, R.I., said the confidential financial settlement does little to resolve a more vexing question: How can transplant recipients be certain the organs they get are safe?
“It’s just mind-boggling,” said Boucher, a loan-servicing manager. “We only heard good things about transplants.”
Certainly, receiving an organ infected with a hamster virus is a rare thing. So is a man contracting uterine cancer from a woman’s diseased kidney, as in the recent high-profile case of Vincent Liew.
In Liew’s case, the donor’s disease was discovered after the transplant, but doctors didn’t think the uterine cancer could spread to the 37-year-old Queens man. His widow lost a bid last month for more than $3 million in damages when a jury ruled in favor of the hospital that performed the transplant and follow-up care.
Though unusual and shocking, such cases are examples of a small but growing number of diseases passed on through donor organs, including bacterial infections, viruses such as West Nile, rabies, tuberculosis, parasites and several kinds of cancer.
Prime for infections
Organ recipients are unusually likely to develop life-threatening illnesses from such infections because the transplant drugs they take suppress their immune systems dramatically.
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No question, most transplants are safe — and necessary. More than 28,000 are performed in the U.S. each year, but 108,000 people need the operations and more than 6,500 die waiting.
As demand for transplants grows, however, concern about safety is rising, too. Many transplant experts are calling for better screening and tracking of donors, even as others worry that extra steps will slow down transplants and risk wasting urgently needed organs.
No one knows how many diseases are transmitted through infected organs, said Dr. Matthew Kuehnert, director of the Office of Blood, Organ and Other Tissue Safety at the federal Centers for Disease Control and Prevention. The U.S. does not have a national surveillance system in place to monitor disease transmission after donation, and a landmark report last fall suggested that the nation’s periodic monitoring is patchy at best.
The United Network for Organ Sharing, which oversees transplants, began requiring reports of disease transmission in 2004. Since then, they’ve been steadily rising, from seven reports of diseases from donors in 2005 to 152 reports in 2009.
Overall, that suggests that about 1 percent of organs from deceased donors may transmit infections, but that number is likely an underestimate, Kuehnert said.
“Because of the dire need for organs, emphasis has been on monitoring transplant availability, and not on unintentional disease transmission,” he said.
But Dr. Michael G. Ison, who heads a UNOS advisory committee on transplants, said many infections transmitted by organs are known and expected and can be treated successfully in the recipient.
The rising numbers actually represent greater awareness of and attention to the issue, said Ison, a transplant infection expert at Northwestern University's Feinberg School of Medicine in Chicago.
All donated organs are required to be screened for a battery of infections, including HIV, hepatitis and syphilis, as well as rare diseases such as the HTLV virus, which can cause leukemia, the cytomegalovirus, or CMV, and the virus that can cause Epstein-Barr syndrome.
But because organ donation is usually conducted in a crisis, where time is crucial, infections sometimes are present in organs that test negative initially. Screening practices can vary by institutions because they can be expensive and incomplete. And some infections can’t be screened at all.
That was the case with Boucher and the others who got the organs infected with the hamster virus. There is not an approved screening test for LCMV, and even when the tests are conducted, they’re not sensitive enough to be routinely reliable.
No one even thought to test for the intestinal parasite that infected the kidney received last year by Peter C. Platt, a 68-year-old New Jersey leasing industry executive who had to be hospitalized within weeks of his March transplant. Doctors couldn’t control the infection that ensued and Platt died on July 15. A CDC investigation revealed that he was infected with strongyloides, an intestinal parasite common in sub-tropical countries. His donor, a middle-aged woman who lived in Las Vegas, was originally from Honduras, where the parasite is endemic.
“Wrong is the word I come up with often,” said his widow, Shirin Platt, 67, of Freehold, N.J., who has pressed health officials to provide better information about transplantation risks. “It was so wrong.”
All transplant recipients are warned of risks, said Ison, the infection expert. And, often, in cases of very rare infections, the situation is tragic but unavoidable.
“Most of the time, I don’t think there’s anything that could be done differently,” he said. “No matter what, there’s no way we would be able to prevent every disease transmission.”
To put the issue in context, many of those who need organs will die without them, Ison said.
Amid looming shortages, patients are reluctant to turn down potential organs because of the low risk of infection. And some transplant candidates are so eager for the organs, they may minimize the risks.
“Are you kidding me? He dreamed about it every day,” said Helen Boucher, noting that her husband had suffered from polycystic kidney disease for more than 35 years. “Maybe we just didn’t pay attention because we were so excited because we were convinced everything was great.”
But some experts say that without reliable data, patients aren’t able to make realistic assessments of the risks versus the benefits of transplantation.
Kuehnert has called repeatedly for a surveillance network to monitor organ transplants. The 2009 report “Biovigilance in the United States: Efforts to Bridge a Critical Gap in Patient Safety and Donor Health” warned that the nation’s current patchwork of rules and voluntary efforts weren’t enough.
Instead, the report called for a centralized system for blood, organ and tissue donations that would track reports of adverse events and quickly trace products from a single donor that are often transplanted into multiple people.
In Boucher’s case, the donor’s infected kidneys, liver and a lung went to local patients, with devastating results, and her corneas were sent to Algeria, where they were used in a 4-year-old girl and a 29-year-old woman. Those patients did not report infection many months after the transplants.
Progress on creating a better monitoring system has been slow. A web-based reporting system, called the Transplant Transmission Sentinel Network, was developed as a pilot project jointly conducted by CDC and UNOS. But there’s no agreement yet about what information will be collected, Kuehnert said, and finding funding for the new system remains a challenge.
Better screening of organs using advanced microbiologic testing could cut the number of undetected infections, some experts suggest. The CDC is preparing guidelines to address that issue, but they are not yet in place, Kuehnert said.
For patients and their families, improved detection can’t come too soon. Helen Boucher said she believes transplant recipients need more information about donors, including whether there are pets in the house that could be possible sources of infection.
There’s no question George Boucher desperately wanted a new kidney, she said. But he was doing fine on dialysis and could have waited for another organ.
“If the situation were to happen today, I would want to know,” she said. “Then let me make the decision and then let me take the chance.”
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