The night before Hatem Tolba received the liver transplant that saved his life, he lay comatose in a hospital intensive care unit. A dialysis machine was doing the work of his kidneys, and a cocktail of medications kept his heart beating.
Four years later, he has gained back 50 pounds, and his jaundiced eyes have cleared. Sitting in the dining room of the suburban house he shares with his wife and daughter in Shrewsbury, Massachusetts, the 49-year-old says his new liver is like having “a whole new engine.”
But Tolba’s remarkable recovery from liver failure has a painful undertone: He got a transplant because of a preventable tragedy. Though he knows few details about his donor, he was told the 21-year-old man died of an opioid overdose. And it weighs on him. “It’s kind of a quagmire, to be honest with you,” he says. “I can’t imagine a family losing a child in that way.”
While the number of opioid overdose deaths nationwide has doubled since 2008, the number of those victims who have become organ donors has quadrupled. Partially as a result of the newly available organs from overdose deaths, the list of people waiting for transplants — nearly 124,000 at its peak in 2014 — has begun to shrink for the first time, after 25 years of continuous growth.
Massachusetts, where Tolba lives, may be the epicenter of the convergence of these two crises. In 2016, nearly 2,000 residents of the state died of opioid overdoses, a rate 2.5 times the national average. Meanwhile that year, more than one-third of organ donors in the state died of drug overdoses, the highest share in the country.
That the overdose epidemic would have this silver lining was not a forgone conclusion. It’s only been possible due to the generosity of overdose victims and their families. Clinicians have also had to adopt new practices to make it possible. And patients who receive such transplants have had to accept additional risks — and are often left, like Tolba, grappling with challenging emotions about the toll that made their survival possible.
How the opioid overdose epidemic and organ donation became connected
The uncomfortable nexus between the opioid overdose epidemic and organ donation evolved because it’s relatively rare for someone to die under conditions that allow for organ donation — but opioid overdoses often meet those conditions.
For organs from the dead to be eligible for donation, the donors typically will have suffered brain injuries so catastrophic they will never revive, yet will have arrived at hospitals in time to be put on a ventilator that continues circulating blood to their organs. In the US, these circumstances occur in fewer than 1 percent of deaths: The leading causes are strokes, blunt injuries including car accidents, and cardiovascular incidents. Now fatal opioid overdoses, which can slow respiration to the point that the brain is starved of oxygen, are a growing part of that list.
According to preliminary data, 49,031 Americans died of opioid overdoses in 2017, and opioids made up two-thirds of total drug overdose death in the US.
The epidemic has affected the whole country, but some states have been hit harder than others: Opioid overdose death rates are highest in most of the Northeast, including Massachusetts. “We started noticing the increase in overdose deaths in 2012,” says Alexandra Glazier, director of New England Donor Services, which coordinates organ donation across much of the region.
In most cases, by the time emergency responders arrive, the victim is already dead and their organs have lost viability for transplant. But several thousand make it to hospitals and ventilators before being pronounced dead. The victims are often young: Nearly three-quarters of inpatient opioid deaths were ages 25 to 54.
Far from being a welcome opportunity for the transplant community, Glazier says the devastation presents a solemn responsibility. “Although it has a silver lining, in terms of its impact on organ availability, or at least it has in our region, it’s still not something we hope continues.” And organizations like hers continue many other efforts — educating the public about opportunities for donation, designing systems to make registering as a donor easier, fostering better coordination with hospitals and transplant centers — to boost the number of transplants, even if the overdose epidemic were to wane.
How doctors and patients are turning tragic opioid overdose deaths into lifesaving transplants
Tolba wouldn’t have obtained an organ so quickly if not for changes in medical practice that have enabled more victims of opioid overdose to become donors. These changes also help explain how, while the number of opioid overdose deaths has doubled since 2008, the number who became organ donors has quadrupled.
Historically, people who died of opioid overdoses were often injection drug users, which also put them at elevated risk for carrying blood-borne infections like HIV and hepatitis C that made organ donation impossible in the past. But many of the victims of today’s opioid overdose epidemic are younger and with a shorter history of drug use, says Jay Fishman, who co-directs the transplant program at Massachusetts General Hospital where Tolba was treated. “A lot of them are first-time drug users,” with organs that can be viable for transplantation into patients in need.
Moreover, transplant programs have developed processes to allow donation from those with infectious diseases. Since 2013, federal law has allowed the transplant of organs from HIV-positive donors to HIV-positive recipients. And with the recent advent of new cures for hepatitis C, hospitals have begun transplanting infected organs into recipients and then treating them for the disease. In Massachusetts, more than one-fifth of donors fall into this category of “increased risk,” among the highest share of any state. Fishman credits this to improved tools for screening potential donor organs for disease and clinicians’ growing comfort managing any infection that emerges in the recipient.
This is not to say that the pervasive stigma that characterizes so much of America’s response to substance misuse does not reach into conversations between transplant clinicians and their patients. “Some refuse due to the stigma,” Fishman allows, “but when posed with lifesaving transplants in very sick people, that refusal rate for a quality organ is low.”
When Tolba was in the hospital waiting for a liver and finally matched with one, the donor had hepatitis C. Tolba’s doctors explained to him that receiving a transplant from that individual would likely infect him with the disease, but he could then undergo treatment for it. He accepted; at the time, he was so frail from liver failure that this was safer than declining the organ and running the risk that he would not match with another before it was too late. In the end, after a successful transplant and a three-month course of therapy for hepatitis C, he had a healthy donor liver and was infection-free.
Changes in medical practice have affected who we seek out to be donors
As transplant programs have become more willing to match patients with donors who are at elevated risk of carrying viral diseases, organ procurement organizations like New England Donor Services have been energized to pursue such donors. This falls to staff like Daniel Miller-Dempsey, a family services coordinator who deploys to hospitals to meet with the kin of potential donors. Traveling by car, he covers facilities all the way from Greenwich, Connecticut, to Bangor, Maine.
Despite his relative youth, at 42, Miller-Dempsey has worked at the organization for 18 years. He says he was drawn to it more as a calling than as a job. When he was a teenager, his father fell ill, and both he and his sister ultimately became living organ donors for him. This introduced Miller-Dempsey firsthand to the suffering of patients and the reward of donation.
Now having spent nearly two decades working closely with people bearing witness to the death of a family member, he says there is a universality to the experience. But overdose deaths have a unique poignancy.
“Those people are better off here, having fought their battles with drugs and won, for their families and for their kids,” he says. “It’s heartbreaking to know that so many people are dying from this.”
The way a organ donor dies may not affect the function of the organ — but that history can still be significant to those involved
For organ recipients like Tolba who receive a transplant from a young overdose victim, the tragic provenance can be an uncomfortable burden to bear. But for an overdose victim’s family, the knowledge that in death their loved one saved someone else’s life can provide a modicum of meaning that they sorely need.
The morning David Maleham got the call about the fatal opioid overdose of his 38-year-old son Matt, he says was shocked but not surprised. “It was a call I had dreaded for years.”
The oldest of four, Matt was bright and charming, but in his short life, he faced severe challenges. According to David and his wife, Roxanne, while Matt was still a young child, a family friend sexually abused him, and later he developed bipolar disorder. Dogged by the trauma, he sought relief in opiates and ultimately developed an addiction. He would struggle to get clean for the rest of his life.
Over the phone that morning, David learned that Matt had overdosed in a parking lot the night prior. He had been unconscious nearly an hour before he was taken to a hospital.
When David and Roxanne arrived at his side, he was on a ventilator but his brain activity had ceased. They said their goodbyes and then asked to donate his organs. It turned out to have been Matt’s wish, too: The hospital staff showed them his driver’s license, which indicated he had registered as an organ donor.
Several months later, the Malehams got a letter from the man who received Matt’s liver. He had been in prison when he fell ill, he explained, and he went on to apologize for it, as if the transplant should have gone to a more deserving recipient. Thinking of her son’s own run-ins with the law, Roxanne disagreed. “You’re the one Matt would have chosen, without a doubt.”
As it turned out, the man’s sister had recently died of a drug overdose. The same epidemic that had struck her down now gave him a new lease on life.
David, who retired after a business career to become a pastor in a small church, is not a big believer in coincidences. Knowing the transplant changed someone else’s life eased the pain of his son’s death, at least a little.
“If it weren’t for that, what a waste. What a pointless death. What did that accomplish? The answer would have been nothing.”
Ted Alcorn is a researcher and writer in New York. Find him on Twitter at @tedalcorn.