Salem transplant recipient advocates for those still waiting
Sep. 16—SALEM — For Mark Moore, one of a million people in the United States whose lives have been saved by an organ donation, the statistics are surprising.
Data from the Organ Procurement and Transplantation Network show there were 169 million people registered as organ and tissue donors in the United States last year. But only three out of every thousand die in a way that allows them to make that final gift.
The numbers underscore the desperate need for more people to register as organ donors, according to Moore, a liver recipient.
"I always thought that if you were a donor, you're good to go, and that no matter how you die, they'll be able to recoup something from you. But that's not the case," Moore said.
The parameters for traditional organ donation are specific: Only those who are on a ventilator at the time of death can be considered.
Myriad groups involved in the complex organ donation process, including Massachusetts-based New England Donor Services, last week touted the completion of the nation's one millionth transplant. Almost 70 years had elapsed since a future Nobel laureate first transplanted a kidney from one identical twin to another at Boston's Peter Bent Brigham Hospital.
Despite so many successes, an average of 17 people die each day awaiting an organ donation.
Moore, who is married with two daughters, recalled being hospitalized repeatedly between his 2017 diagnosis with Stage 4 cirrhosis and his liver transplant three years later. He attributed the condition to nonalcoholic steatohepatitis (NASH), which is similar in effect to long-term, heavy drinking even though it occurs in those who don't abuse alcohol.
During one of those hospital stays, he was assigned to the same room as another patient with cirrhosis. Both were experiencing high ammonia levels, disoriented and close to comatose.
"We became friends," Moore said. "We would talk countless hours in the middle of the night because we both couldn't sleep."
The friendship showed him the importance of commiserating with someone who understood exactly what he was going through. He decided then that he wanted to volunteer with New England Donor Services, or NEDS, the organization that facilitated his transplant, to be there for others going through the same experience.
They remained in touch until, one day, his old hospital roommate didn't pick up the phone.
Moore found out the morning after his own successful transplant surgery that his friend had died while waiting for a liver.
"Here we were, going through the same thing, and I survived and he didn't," Moore said.
The news reinforced Moore's decision to volunteer with the organization, he said. He wanted not only to be there for other recipients, but to reach out to more potential donors.
There are currently more than 105,892 candidates on the waiting list at transplant centers throughout the United States. Connecticut's centers at Hartford Hospital and Yale New Haven Hospital have 1,123 candidates on their waiting lists.
Steven Averhart, director of family services with NEDS, leads a team of 12 coordinators who serve as the link between grieving families considering organ donation and the patients awaiting transplants.
NEDS is one of 57 organ procurement organizations tasked by the federal government with coordinating the transplant process. It's a sensitive chain of events that involves getting consent, collecting the organs and transporting them to the waiting recipient while the clock ticks.
Eligible donors are typically those who experienced a severe brain injury in circumstances such as a car crash or stroke, according to the nonprofit Donate Life advocacy group. They are in a hospital on a ventilator at the time they are declared brain dead, which allows them to remain on the ventilator through the recovery surgery so oxygen continues to flow through the organs.
Averhart said coordinating organ donation requires a delicate approach, especially when the person being declared brain dead is not already a registered donor.
In those cases, Averhart said, "We work with families to try to paint a picture of transcendence, letting them know their loved one has the opportunity to save the life of another through organ and tissue donation."
Racial health disparities
United Network for Organ Sharing, or UNOS, the nonprofit umbrella organization comprising the regional procurement organizations, described 2021 as a record-breaking year for transplants. There were more than 41,000 of the surgeries, which UNOS said was more than double the rate from 25 years ago.
But the agency is not without criticism.
A study from the National Academies of Sciences, Engineering and Medicine earlier this year found inequities in the way the transplant process is administered. The group said a person's chance of being referred for a transplant evaluation, being added to the waiting list, and receiving a transplant "varies greatly" based on factors including race and disability status.
The Associated Press reported that anger boiled over last month in Washington, D.C., at a Senate committee hearing where lawmakers blamed UNOS for cumbersome organ-tracking and poor oversight.
Averhart, who started his career in the organ donation field at a procurement organization in Chicago, acknowledged the donation process has taken hits lately. He said some are appropriate and some are not.
"There is, without question, groups of people who have been suppressed, oppressed and depressed for hundreds of years," he said. "Having said that, with NEDS we certainly follow all the guidelines needed and we go above and beyond to make sure that we're doing what we need to do."
He cited the creation of NEDS' Social Equity Workgroup in June 2020 to reduce racial health disparities in transplant access.
"Though there has been some criticisms, I can say personally I have not seen them," he said. "Here at NEDS, this is a fantastic (organ procurement organization) that really is for the betterment of all people."
Dr. Oscar Serrano, a surgeon at Hartford Hospital who performed Moore's transplant, said the Hartford Hospital Transplant Program and NEDS have partnered to reduce the inequities that exist in the field and improve access to transplants through various initiatives and events.
He cited a recent symposium put on by the organ procurement group on effective initiatives to reduce transplant disparities. He sat on the panel about how to improve access to living kidney transplants for vulnerable populations, and how to identify risk factors in non-white patients for end-stage renal diseases.
"This is just one example of our combined efforts to improve access to care, break down barriers, and lower the stigma around donation," he said.
Leaving a space
Moore ― showing a tattoo on his arm with the date of his transplant and the words "Because of you, we live" ― said he left a space for the name of his currently anonymous donor.
He first wrote to the donor's family when he got home from transplant surgery to try to find out more about the person who saved his life.
"My wife actually had to write the letter for me because I was so weak I couldn't hold a pen," he said. The message was conveyed to the family through the procurement organization and the transplant center.
He did not get a response, so he sent another letter on the anniversary of the transplant.
According to Averhart, the overwhelming grief makes it difficult for some donor families to answer letters from recipients. On the other side, some recipients find it difficult to respond to letters from donor families when they are alive and walking because of someone else's demise.
Moore remains eager to learn his donor's name.
"As long as I'm on this earth, I will write every year or every six months," he said.
