Ted Alcorn | Vox

The waiting list for organ transplants is finally shrinking — for a grim reason

2018-10-01T09:23:44-04:00

Hatem Tolba with his wife, Julie, at their house in Shrewsbury, Massachusetts. Hatem received a liver transplant in 2014 from a victim of the opioid epidemic. | Ted Alcorn for Vox

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.

Thousands of organs are lost before they can be donated. Here’s how to save them.

2018-05-25T08:30:57-04:00

There is something near-miraculous about the organ donation system, which allows tens of thousands of Americans a year to give up parts of their body they no longer need to extend the lives of others.

And yet tens of thousands of viable organs are also lost each year rather than going to patients desperately in need of them. Researchers recently estimated there are only half as many donors as there are deaths with potential to donate.

Given how life-changing an organ transplant can be, and the scale of demand, how could we ensure that every potential donation finds its way to a recipient?

We tend to focus on the surgeon as the key figure in the equation. But as it turns out, the success of organ donation hinges just as much on other links in the chain.

If we supported the entire organ transplant system and held it to better account, we would ensure that more organs from the dying could become a gift of life for someone else.

Here’s how that might work.

There’s an urgent need to increase the number of organ transplants

2017 was a record year for organ donation and transplantation, as the number of deceased people whose organs were recovered for donation surpassed 10,000 for the first time. Those donations, combined with organs offered by nearly 6,000 living people, together meant that 35,000 desperately ill people got lifesaving transplants. But that same year, more than 50,000 people were added to the waitlist.

Of those people currently on the US transplant waitlist, 81 percent need a kidney, 12 percent need a liver, and the rest need a heart, lung, pancreas, or intestine. They suffer from conditions as varied as diabetes, alcohol abuse, or hepatitis C, but what they have in common is that one of their vital organs is irreversibly failing.

As organs become available for transplant, they are matched with the sickest nearby patient with whom they are compatible, following a complex protocol that takes physiological and geographic factors into account. To reach the front of the line, patients may have to wait until their illness is very advanced, and, as a result, undergo surgery when they are least able to physically tolerate it.

Transplant centers control which patients are added to the list; they can be conservative in putting forward only those who they believe will benefit. Dr. Seth Karp, director of the Vanderbilt University Transplant Center, estimates that only one in 10 patients who die of liver disease in Tennessee was even on the waiting list for a liver.

But organ donation after death is still the exception, not the rule

The supply of organs, in turn, is largely handled by a network of nonprofits that work in hospitals but possess skills that clinicians have little opportunity to practice — because within the health system, organ donation is actually fairly uncommon.

Organ procurement organizations (OPO), as they are known, oversee all the hospitals in one of 58 donor service areas (DSAs) across the country. When a hospital flags a patient with potential to donate, the OPO dispatches a staff member to the bedside. They and their colleagues serve as a liaison between all the parties involved — the donor hospital, the transplant center, the mourning family — and must perform the alchemy of turning one person’s loss into another’s reprieve.

Howard Nathan began working at the Pennsylvania-based OPO Gift of Life in 1978, as a transplant coordinator. Today he is the organization’s president. Their essential responsibility, as he sees it, is to represent the people on the waitlist: “They don’t have a voice at the bedside of the donor. We’re their voice.”

The OPO’s work is a balance of sensitivity and speed. They have difficult conversations with patients’ families on what may be their darkest day. Once the patient dies and blood ceases circulating oxygen, every passing moment means the organs are further compromised, reducing the likelihood of a successful transplant, so the OPO coordinates and carefully manages their swift transportation to whichever transplant centers are ready to make use of them.

As medicine has evolved, so has organ donation

Part of the challenge is that organ procurement must evolve in step with changes in how we treat illness, and how we die.

Historically, transplant surgeons were reluctant to accept organs from older patients or organs that had to be transported from a great distance, which left them depleted of oxygen. They favored donations from younger people who had suffered a traumatic injury or illness resulting in irreversible loss of brain function (known as “brain death”) but whose circulation had been maintained by life support. This preserved oxygen flow to the organs, creating a window of time for matching them to a recipient.

With advances in post-transplant care, surgeons are increasingly able to transplant organs previously considered marginal. Those include donations from older patients, organs transported over longer distances, and after deaths where the patient’s heart stopped. These donations after cardiac death present additional challenges because the clock starts ticking immediately upon death, leaving less time for the transplant. But cardiac deaths are nearly as numerous as brain deaths, so they hold potential to double the number of deceased organ donors.

Drawing on four years of data on deaths across the country, researchers calculated there are more than 24,000 deaths with potential to donate each year, more than double the number of actual donors in 2017. The researchers found that among people who died at age 39 or younger, 60 percent became donors, but of those ages 40 to 59, only 30 percent did, and just 11 percent of those ages 60 to 75. Of qualifying cardiac deaths, only one-fifth became donors.

“These data highlight the large number of unrealized donors under our current system of organ donation and transplantation,” wrote one of the study’s authors, Dr. David Goldberg at the University of Pennsylvania, in an email. “Efforts to standardize OPO practices are needed, especially among OPOs with the lowest donation rates.”

When OPOs focus on finding more donations after cardiac death and expanded donor criteria, it can yield major returns. When Jeff Orlowski took over the OPO LifeShare of Oklahoma in 2012, they were focusing on a few major referral hospitals because that was where trauma patients went.

Under his leadership, the organization reallocated personnel to better serve all 145 hospitals in their area. And where they had been facilitating 80 to 100 donations a year, their total nearly doubled to 183 in 2017.

The “three-legged stool”

Invariably, the organ donation system’s performance reflects some factors that can’t be easily attributed to any one entity so much as to the delicate collaboration between them. “The DSA is like a three-legged stool,” says donation expert Teresa Shafer, referring to the hospital caring for the dying patient, the organ procurement organization soliciting the donation, and the transplant center that will use it. Success, she explains, requires that “the OPO, the transplant center, and the donor hospital are firing on all cylinders.”

One place where they haven’t been is New York City, which has the lowest rate of donation in the country. Between 2004 and 2014, organ donations there fell by 10 percent even as they increased by 20 percent nationwide.

The local OPO, LiveOnNY, was slow to develop a practice of soliciting donors after cardiac death. And local hospitals were disengaged. Dana Lustbader, who has worked in New York on both the OPO and hospital side, recalls that during her medical training in Wisconsin, organ donation was integrated into the curriculum and this was reflected in its prominence in medical practice there. “A brain-dead donor was managed as aggressively as a living person who had pneumonia on a ventilator. They were both aggressively managed and equally important,” she said. “Here in New York, it’s a different culture.”

LiveOnNY is renewing efforts to build a culture of donation, recently co-hosting a summit with the Greater New York Hospital Association and initiating projects in half a dozen hospitals to test better approaches. But it’s not the only locale that could benefit. Shafer has called for a similar convening of hospitals and OPOs nationwide, like one a decade ago that substantially boosted donation rates.

Donations from the living have stagnated, and there’s an opportunity to boost them too

Another way to increase organ transplants is to look beyond the dead. While most transplanted organs in the US are donated by the dying, about 40 percent of kidney transplants and 4 percent of liver transplants are from living donors.

A healthy individual with two kidneys can part with one kidney, as they can with a portion of their liver, though with a higher degree of risk. Last year Vox’s own Dylan Matthews gave a kidney to a stranger in what is called a nondirected donation, inspiring his colleague German Lopez to do the same in March. (Such procedures are rare, though — only one in 30 living kidney donations is nondirected. The vast majority of donors are someone known to the patient.)

From the recipient’s perspective, a living donor is preferable because the donated organ typically functions better. Also, because living donations are arranged outside of the deceased donor system, recipients needn’t wait until deteriorating health moves them to the front of the waitlist, so they are typically in better condition to endure surgery.

Dr. Dorry Segev, a professor of surgery at Johns Hopkins School of Medicine, says increased rates of living kidney donation could help meet the country’s needs. “In my opinion, there are enough healthy people in the United States to easily alleviate the shortage,” he wrote in an email. But while the number of living kidney donations tripled between 1990 and 2004, it has since stagnated.

Efforts to turn this around have focused on making it easier for sick patients to seek out potential donors. After observing that patients are often reluctant to solicit a kidney donation themselves, Segev and a team of researchers created a program for training a “champion” among a patient’s peers to ask on their behalf. They also developed a smartphone app that allows patients to post about their need to social media, significantly increasing the likelihood a donor will come forward.

“We don’t use bad livers. We use good livers with bad stories.”

Once the family of a deceased (or living) donor agrees to move ahead with donation, a transplant might seem sure to follow. But there are further hurdles. For an OPO to make good on the promise of a donation, it needs a transplant center to accept and use it. And researchers have shown that some transplant centers are much less likely to accept organs than others.

This is partly a predictable consequence of the way transplant centers are regulated. The Centers for Medicare and Medicaid Services evaluate them in large part on the share of patients that undergo a successful transplant and survive at least one year. These measures are appealing on their face but do not reflect the outcomes for patients whose transplants the centers forgo. It’s as if in baseball, batters faced no penalty for letting pitches go by, whether in the strike zone or not: batters might be less likely to swing and miss, but they’d also waste many more good pitches.

Some transplant centers are defying these incentives. George Loss, the chief of transplant surgery at the Ochsner Clinic in Louisiana, has embraced a different paradigm for the clinic’s liver transplant practice. By considering donors typically thought of as “marginal,” Ochsner gains access to livers that other centers have declined, effectively expanding its supply. This allows a higher volume of transplants, and its patients get to the front of the line more quickly while they are healthier and better able to tolerate a less than ideal organ.

The criteria by which surgeons judge organs are somewhat subjective, and this may be part of the problem. Facing the decision of whether to accept an organ under a narrow time constraint, a prominent risk factor — say, if the patient was obese or had a history of alcohol abuse — may be enough to dissuade a surgeon from moving forward. In contrast, Loss says at Ochsner they thoroughly scrutinize all offered organs, examining scans and other evidence themselves rather than relying on secondhand reports. “We don’t use bad livers. We use good livers with bad stories.”

Other centers have embraced a similar philosophy. Loss thinks the shift could be accelerated if clinicians formed an advisory group that transplant surgeons could consult when making these tough calls.

New technology may help doctors use more marginal organs too. A randomized trial published in Nature this month found that livers donated after cardiac death that were preserved using a novel device were significantly less likely to be discarded for appearing too marginal — and yielded equivalent or improved survival for their recipients — than livers donated after brain death and stored using conventional methods.

States like New York are trying to foster a new culture of organ donation

The biggest predictor of whether a person will donate an organ is whether they previously registered as an organ donor. Should their family raise objections, the OPO will not necessarily override them, but authorized donors end up donating more than 90 percent of the time. The share of the population on a registry varies enormously across the US, from Washington, Montana, and Alaska, states where it exceeds 85 percent, to New York, where fewer than 30 percent of residents are registered.

Cultural mores vary across the country, but experts say state governments can take steps to make it easier to donate. Every state now has a digital portal for authorizing donation, but some do more to integrate it into other processes residents will encounter.

After years of delay, in 2017 New York launched a modern online registry and now offers people using the state’s health insurance marketplace the chance to join. Since 2017, more than 147,000 people have used it to enroll, according to health department data. Gov. Andrew Cuomo also signed a law allowing 16- and 17-year-olds to register as donors.

States can also engage and educate community directly. Public service announcements promoting organ donation now festoon subway cars and kiosks around New York City.

To increase the availability of organ transplants, advances in technology and greater investment can’t hurt, but the real success will come from getting doctors to work better together, asking dying patients hard questions in the best possible way, and making a more honest assessment of risks and returns.

These advances aren’t easily billed, and our medical system is not adept at promoting them. But achieving them has the potential to extend tens of thousands of lives.

Ted Alcorn is a researcher and writer in New York. Find him on Twitter at @tedalcorn.

Correction: A previous version of this story stated that OPO LifeShare of Oklahoma’s total number of donations in 2017 was 159. In fact, it was 183.