He was watching TV in bed when he got the call. It was the transplant team at the University of Maryland Medical Center in Baltimore. They had a kidney for him, from a donor who had just overdosed in a New York deli. Did he want it?
Brian wasn’t in great shape. His failing kidney made him exhausted, he had no appetite, he would soon need dialysis, and he’d been diagnosed with hepatitis C, probably contracted decades before, when he was addicted to heroin and cocaine. But that didn’t mean he was ready to take just any old organ. “I’m not about to jump out of the frying pan and into the fire,” he told STAT. “I won’t take one from someone who was shooting dope or selling sex.”
This dilemma has become surprisingly common for transplant patients, as the nation’s opioid epidemic yields a tragic surge in organ donors. And surgeons themselves face a quandary: How much of the overdose victim’s story should they reveal to desperate transplant candidates?
Brian’s doctors believed disclosing how the donor died was just part of getting the patient’s informed consent. Yet other surgeons feel that this is a breach of the donor’s privacy, and that it may not be doing the patient any favors: The stigma surrounding drug addiction can lead someone to turn down an organ that could have saved his or her life.
With little guidance about exactly what constitutes informed consent, surgeons walk this fine line every day.
The numbers have been staggering, especially in those areas hardest hit by the opioid epidemic, said Alexandra Glazier, president of the New England Organ Bank. This year about 21 percent of the organ donors in the region died of a drug overdose, she said, compared with 4 percent in 2010.
That trend has been true across the country, according to the United Network for Organ Sharing, or UNOS, which runs the nation’s transplant system.
Under normal circumstances, a doctor would not consult the patient before accepting an offered organ. Once an algorithm has determined that an organ could be a good match for a recipient, that person’s surgeon has an hour to make sure it is indeed a good fit. If it’s not, the organ goes to the next patient on the list.
But in special cases, the surgeon needs the patient’s informed consent before accepting the organ. It could be that the kidney or lung comes from an older donor, and so may not last very long. Or the donor could be defined by the Public Health Service as being at an “increased risk” of carrying an infectious disease such as hepatitis C or HIV.
Donors who injected drugs, as well as those who had been incarcerated, had sex for drugs or money, or had recently been on dialysis, are among the large group of people classified as being at higher than average risk for one or more of these viruses.
Initially, a patient has to consent to even be considered for one of these organs. If they do, and one becomes available, then a more specific conversation is in order — and that’s where things become tricky.
Often, a patient’s willingness to accept an organ changes drastically depending on what he or she knows about the donor.
How risky are high-risk donors?
At 26, Brian was getting high off heroin and cocaine “as often and as long as possible.”
“As long as there was some money available, all day if I could,” he said in an interview, on condition that his last name not be published.
He started out sniffing drugs, but ended up injecting them, so he’d get a bigger bang for his buck. He shared needles when he needed to.
Two years later, he’d kicked the habit. Now at 54, he still lives in Baltimore and is still sober. And he’s adamant that he doesn’t want a kidney that has been through the same things he has.
“He was shooting drugs and sharing needles,” he said of a potential donor. “Just because they tested it for HIV and it came out negative doesn’t mean it’s not in the incubation period.”
He’s right. Donors’ blood gets tested for common viruses, and although the testing has gotten better over the years, it’s still not perfect. Laboratory machines can detect tiny bits of viral genetic code in the blood, but if the donor caught an infection in the last week before death, there may not be enough RNA or DNA to be picked up.
That’s why transplant centers are required to get special informed consent for donors at risk of infection — even if the chances of disease transmission are slim.
“It’s for transparency reasons, making sure that patients are aware of the organs they’re receiving,” explained Dr. David Klassen, chief medical officer at UNOS. “They are labeled high risk, but if you really look at the data, the risk in these donors is really quite small.”
UNOS can put a transplant center on probation for not following Public Health Service rules on seeking informed consent, but what to tell patients to meet these directives is left to the discretion of the surgeon and the hospital.
Part of the debate among surgeons has to do with how much risk each “at risk” behavior actually presents.
Dr. Carlos Marroquin, chief of transplant surgery at the University of Vermont Health Network, tells patients whether a donor was an injection drug user, a gay man, or someone who spent time in prison, but he doesn’t equate these different experiences with different levels of risk.
“You don’t want to give someone a false sense of security,” he said. “Your grandmother, who you think has perfect blood, could still end up being hep C- or HIV-positive, or hep B-positive. You don’t know what they’ve done.”
Dr. Emily Blumberg, a transplant specialist at the University of Pennsylvania’s Perelman School of Medicine, however, does the exact opposite.
For her, someone who died because of an injection drug overdose is more likely to have an infection that the test won’t pick up than someone who briefly spent time in prison. She breaks that down for the patient, saying that one particular donor was engaged in the highest of high-risk behaviors, while another was on the lower-risk end of the spectrum.
She won’t reveal anything that could potentially make the donor identifiable, though, and that means not telling the patient how the donor died.
“Every center interprets this a little differently in terms of protecting their recipients and the donor’s personal information,” Blumberg said. Her own practice has been reinforced by her experience. “I’ve had patients who have spent a lot of time trying to identify donors,” she said. “They may be online looking at obituaries. People are pretty savvy with the internet.”
At Massachusetts General Hospital, transplant surgeon Dr. Nahel Elias feels that details from the donor’s life are none of the recipient’s business. He doesn’t say whether the donor used IV drugs, spent time in jail, had sex for money or drugs, or was a gay man, “just like I make no difference if the donor is male or female, black or white,” he said. “I tell them, ‘You have to understand the risk is very low, but obviously there is no such thing as a risk-free organ.’”
‘I would’ve taken a monkey’s liver’
Some surgeons have yet another reason for not revealing that a donor died of a drug overdose: The stigma around drug use can bias patients’ decisions.
While accepting an organ from a donor who was an IV drug user may seem very risky, those donors actually tend to be younger — and often healthier — than many others, and so may cause fewer health problems for the recipient.
They often haven’t had high blood pressure, and don’t have much fat built up on their livers. Meanwhile, the diseases they could potentially transmit are becoming less worrisome: New drugs have made hepatitis C easier to treat, and HIV, if not curable, can be managed with medication.
Dr. Charles Rosen, at the Mayo Clinic in Rochester, Minn., feels required to explain why a donor is at an increased risk of transmitting diseases, but doesn’t feel particularly worried about it.
“It’s not a very major issue for me,” he said. “There are far greater risks that we take: If the liver is fatty, if the liver had prior damage from trauma, if the liver is from an older donor …”
Some doctors have noticed that patients say no to the organs of IV drug users anyway.
“We get into a problem of the emotional distaste of many of our patients,” said Dr. Jonathan Bromberg of the University of Maryland School of Medicine. Still, he feels it’s important for his patients to have as much information as possible, and so he does reveal how a donor died.
Many patients — especially those waiting for hearts, lungs, and livers — are too sick to say no to an organ that could potentially save their lives.
In 2012 and 2013, when Sue Needle was on the transplant waiting list, her liver failure seemed to affect every single part of her body. Her abdomen became filled with fluid, and her doctors had to drain off 8 to 9 liters a week. Her legs were so swollen she couldn’t walk. Because her liver couldn’t filter toxins out of her blood, her brain began to go haywire, making her confused. Her ovaries began to bleed.
She agreed to a transplant from a donor who had been found unresponsive — after the organ had been rejected by two other people. “I was so sick I would’ve taken a monkey’s liver,” said the 58-year-old, who lives in Fort Worth, Texas.
Dr. Sander Florman, director of the transplant institute at Mount Sinai Health System in New York, said it’s quite possible that patients will decide to reject an organ because of stigma, but it doesn’t worry him. After all, there were about 120,000 Americans waiting for transplants in late July.
“The harsh reality is that most of those people waiting for a kidney are not going to get one. They’re going to die while they’re on dialysis. There just aren’t enough organs,” he said. “We have over 1,650 people waiting for a kidney here. If one person says no, the next 10 will say yes.”