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.”
I am in the process of becoming a live donor . I have hepatitis c and was also a IV user for years . I know if it was for my child I would take an organ from anybody if it would save their life ! Who would turn down an organ based on donor’s history ?!? This is crazy . I just want to be given the opportunity to save somebody’s life .
I have had Heart problems for 30 years. I was on the transplant list 20 years ago and had 3 dry runs. I insisted on working as long as I could and each dry run I had to charter a private plane to fly to where the heart was. Lucky for me I had a Dr. who wanted to do more then maintain my heath and talked me into getting listed again. I spent 5 months in the hospital waiting on wonder drugs to keep me alive until 2/14/2016 my Dr came in my room about 9:15 pm and said we have an offer. My donor died of a drug overdose and he informed me of all the risk of taking it. I only had one question for my Dr. would you put this heart in one of your family members? He said yes , I took the heart and I am now 7 month post transplant and the only regret I have about taking this heart is that a young man made some bad choices and died fo rme to live. I tell everyone I am not a recipient I am a caretaker.
God bless you . So many people look harshly upon drug addicts and their organs . I’m in the process of becoming a live kidney donor . Drug addict for twenty years . I just want to save somebody’s life . I am not a bad person just because I’ve made bad choices in my life . I am glad everything worked out for you .
Mine did. He felt it was important for me to know and understand the potential risks, though all the initial tests, including HIV were all negative. The liver itself was what he described as, “pristine.” I also had very little time left to live, and I knew it. I had to roll the dice, and fortunately, they came up 7’s.
People with HIV can get kidneys but only from other people who have HIV or Aid’s. This man you are talking about well I share for a lot of people & he I choose not to. He has HEP C not any different from HIV in a technical term. He should have to do the same. There was another man who was going to donate as a paired exchange for a child who needed a kidney. He passed all the test, I mean alllllll the test, another child was going to get his and her donor was giving to the child he was doing it for. I was in the news, He could have lied but he was an honest man and he checked a box which put him in a High Risk area. Now he was a living donor so he had extensive testing done and he had no viruses nothing but a very healthy kidney, Right before surgery parents asked why is he a high risk ? DR. had to answer he checked a box saying since 1979 he has had sex with another man. Parents turned the kidney away even if it could cost their child’s life ( NOT A DARN THING WRONG WITH ORGAN) So other child was not getting their kidney. People flocked to Hospital when they heard the news wanting to be tested for young girl Mr. DR I will cal him was going to donate for. Since then though he did finally get to donate & young child got their kidney.
This is what will happen people will start lying or not even care to donate, Thank God Mr DR dd not give up.
This other person & his Dr. are assuming to know the said persons history, nope did not. In fact I was around then when that happened he did not tell people all of his story on site he is on, he made it seem like it had what we called when we were kids cooties. It is people & Dr.s like that who are making decisions based n only what they have.
In fact the person who did over dose, it was in beginning of trying drugs. So basically he said no to a good kidney . I do pray they were able to save several lives so that young persons death will not have been in vain. He is judging from his drug experience , Heroin yes it will make you do some low down filthy things but this person did not die from that.
I feel he & any on else turning a organ down because it may come from some one like he was should be only able to get one from a person who has HEP C.
It is a shame how they go on FB & tell people they need a living donor because it s healthier that is a crock of slop. We have eope who like to censor their own donors which is not a good idea. I will not share for them, sorry but they want people who are between 25 and 40. No not right also all a living donor will do is help them get off the waiting list. I do share for some great people, every day. On every social site there is and I do it because I am good at helping others and there is a few of us who make pages for peple also we share every day. I read their stories & post coordinator numbers blood matches.
We care so this article to me I have seen parents whose children have had so much medicine pumped into them still after fighting a battle with cancer, drug over dose & much more choose to allow their child to donate.
I do not think the Dr.s of patients should have the rights to tell their patients what they died from unless they are going to get all their records and not make the person look like some hooker or scum. His words just disgust me…
We care & we are short enough on donors with out letting some guy like this make that choice then come on Facebook & say this & that and then on here he compares this person to him. Make him wait…..I am on FB I share for a a lot of people, So hey you are welcome we will help any one for Free to share & get your story out there to help increase your chances of getting a kidney donor. know if you stay on Dialysis to long heart problems start & much more. WeNeedASpareKidney2015 will help any one in need
This article is distressing for me. It is ‘another thing’ the patient has to worry about. As a nurse/case manager and patient advocate, it is my understanding that determining the state of the organ is a medical process. If the organ meets the requirements and is safe for transplant, should the details of the organ donor matter?
The patient makes the decision to take an organ when he/she goes on the list. It is then they should be advised of the risk. Most are too sick when they are given the news an organ is available to have to decide if they want that organ due to the fact the donor might have been addicted or have some other unsavory behavior. That is not the right time to share this information and adds another burden to an already sick and sometimes desperate person.
Do not worry, you see he has a page he did not tell all the people there about his condition. In fact the young lady who OD was a first timer, To me if people who have HIV can only get organs from people with HIV well since he turned her down he should have to wait also only be able to get one from a HEP C. He missed out because he classified her as him
I understand your concern and thought on this but I have to disagree with you. As a heart transplant care taker I feel I had the right (or my family if I was to sick) to know every detail about the organ I was being offered. My reasoning for this comes from when I got my first pacemaker. The only question I was ask was are you right handed or left? They wanted to know in case I was a hunter and which shoulder my gun would be against. Not until afer having the surgery was I told I could no longer be around high voltage along with a list of other things. I was a certified welder and now with a pace maker I could no longer weld. Had I know this ahead of time I would have not had it done. I have spent over a year of my life in ICE, 8 heart attacks and a ejection factor of 9 when I went in for my transplant so yes I understand this side real well.
I was the lucky recipient of a liver transplant in 2000. My docs informed me at the time that the donor had been exposed to Hep C and, as I already had it, I took the chance. My choice was that or death from Liver cancer. There was some evidence that the two types of Hep C would have fought each other to my benefit, but that became a moot point once I was in the Harvoni trials and was cured of the disease. I did have to hold my breath for 6 months waiting for HIV tests but that was longer than I was expected to live without it. I would do it again without a doubt – I suspect we don’t inherit people’s brain diseases (addiction) with one of their organs. Of course this fellow wasn’t racing the clock so he chose not to recognize (or, perhaps, appreciate) the greatest gift he was ever going to be offered.
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