As overdose deaths increase, so do life-saving organ donations

Debbie Deagle lost her son Stephen not once, but twice.

The first time was when her 32-year-old son fatally overdosed from fentanyl on his way to a treatment meeting. The second time was when a patient who had received his heart from an organ transplant passed away after the surgery.

“To me, that was like my son dying all over again,” Debbie said, sitting in her parents living room on a recent rainy afternoon in Somerville, Mass. “The thought his heart was beating somewhere was a little comforting, and when they told me the heart transplant recipient didn’t make it, that sort of shattered me all over again.”

One of the ripple effects from record numbers of fatal overdoses from heroin, fentanyl and prescription opioids in New England and across the nation, is a spike in the number of organs getting donated.

“We are seeing this here more than nationally,” said Helen Nelson, Senior Vice President of Organ Donation Services at the New England Organ Bank.

Since 2000, the number of organ donors in New England who died from “drug intoxication” has ballooned from 7 to 58 in 2015, according to federal data. Nationally, there’s also been an increase – in 2000, 66 donors died from drug intoxication compared to 848 in 2015.

“While we have the growth in the number of donors, which makes more organs available, it does seem to go hand in hand with the drug overdoses,” Nelson said. “It’s definitely something we’ve seen jump since 2012. It’s a huge jump.”

The silver lining to the drug epidemic is some patients waiting for a life-saving organ transplant are getting it sooner. That knowledge can prove comforting to families of an overdose victim.

“Once the tragedy has occurred, they and their families can elect to proceed with the gift of life,”said Dr. David Axelrod, a surgeon at Dartmouth-Hitchcock Medical Center in Lebanon who heads the hospital’s transplantation unit.

“That is for many families to feel there’s some sense of purpose in an otherwise very tragic event.”

There are over 123,000 people in the United States waiting for organs.

“There’s a huge and persistent need for organs in this country,” Axelrod said.

That need is especially great in New England, where wait times for organs in highest demand like livers and kidneys are longer than other parts of the country.

Donors who died from an overdose in New England are nearly double the national average. Nationally, 9.3 percent of all deceased organ donors died from an overdose in 2015. In New England, that rate is 18 percent.    

While the number of donors who died from overdoses in New England is relatively small, so is the total number of organ donors. That means the families who are deciding to donate after an overdose are making a difference.

New England’s organ shortage can be chalked up to the fact that it’s one of the nation’s healthiest regions, with low rates of heart disease, gun violence and car accidents and a relatively good health care system.

But New England is also being hit particularly hard with the drug epidemic; 3,316 people in New England died from drug overdoses in 2015, according to the latest statistics from each state’s medical examiner’s office.

New Hampshire saw a record 437 fatal overdoses in 2015, surpassing the record death toll of 2014.

Records for how many donors came from New Hampshire specifically aren’t available.

But the trend in New England is clear.

Last year, 20 percent of New England’s organ donors had a history of IV drug use. The national rate is half that, at 10 percent.

About a third – 34 percent – of New England donors met the increased risk guidelines, which could mean drug use or risky sexual behavior, compared to 22 percent nationally.

Stephen Deagle was one of the people who lost his battle with addiction.

“He was my shining star,” his mother said. She and her son were an inseparable pair from the start – Stephen’s father passed away when he was young, and Debbie raised him as a single parent nearly his whole life.

“We were like peas in a pod,” she said. “We were best friends.”

Debbie remembers her son as an intelligent and generous man who loved people, music and his job working with computers.

The two had lots of deep conversations and Debbie imparted her love of ’70s and ’80s rock on her son; the summer before he passed away, the pair went to a Tom Petty concert at Fenway Park.

Stephen used to tease his mother, telling her, “Ma, you think you’re young and cool, you’re old and you’re not.”

He passed away from a pure fentanyl overdose in January 2015, after a nearly 15-year struggle with prescription pills and heroin that started after he was prescribed Oxycontin following surgeries to remove his wisdom teeth and fix a piece of broken jawbone in college.

“Honestly, I never thought I was going to lose him,” his mother said.

When she got the call that her son was in the hospital, Debbie flew through traffic, racing from her home in Revere to Boston Medical Center.

“What ran through my mind was that somebody saw him like I’ve seen him, nodded, but that he would be fine,” she said. “I never thought when I was driving there that I’d never get to say goodbye to him.”

Stephen was in a coma for six days, until doctors told his mother the chances of saving his organs was slipping away. He already had the organ donor designation on his license.

“My son would be so happy to know that he gave life to people,” Debbie said. “That’s what he wanted.”

Organ donation from drug users still carries a small amount of risk, but advances in medicine have made it so that testing for infectious disease in donors is fast and accurate.

“The sensitivity of these tests is greater,” said Dr. Jay Fishman, associate director of the Transplant Center at Massachusetts General Hospital. “It’s low, it’s not zero, but it’s low.”

Infectious diseases like HIV, hepatitis C and hepatitis B are the biggest thing doctors and patients have to consider when an organ donor is a former drug user.

Fishman recently went back and retested 168 organ recipients whose donors were drug users and found that none of the organs had transmitted disease.

“Now we do this testing, we say to the patient, we’re going to give you an organ from somebody who we think is completely negative, but the risk is not zero,” Fishman said. “That gives us a level of safety that we couldn’t provide in the past. It’s really quite a good situation.”

In rare cases, organs that have already been infected with these diseases can be transplanted to someone who is already HIV or hep C positive.

“If we detect it, we can still use those organs, but we use them more selectively,” Axelrod said. “It actually allows us to use these organs that were previously unused.”

Many people who die from drug overdoses are young, meaning their organs potentially still have decades of useful life ahead of them.

“We don’t have anything to suggest these organs are anything less than ideal,” Fishman said.

The cruel irony that one of the worst drug epidemics to hit New England is providing others with life-saving organs isn’t lost on Fishman, Axelrod and Nelson.

“It really is a terrible situation, especially as it impacts young people and people who are not traditional drug users,” Fishman said. “We’ve got to make some headway on this, this is not the way we want to get our organs.”

It’s been nearly a year and a half since Stephen passed away, but the pain hasn’t eased for Debbie Deagle.

“I still can’t sleep,” she said.

Instead of sleeping, she paces around her home in the early morning hours, holding one of the many framed pictures of her son, talking to him and leaning down to kiss the glass.

All of the pictures in the house of Stephen have lipstick marks left on them, she said. When she’s watching one of his favorite television shows like 1950s drama Mad Men, she’ll turn one of his pictures to face the screen and ask him if he likes the episode.

The one bright spot for her is the knowledge that pieces of her son are sustaining three other people – two people who each received one of his kidneys and another who got his liver.

She would like to meet them in person someday.

“For me, I’m happy,” Debbie said. “My mom’s a diabetic, and she could have used a kidney a long time ago. I totally believe in donation.”

(Ella Nilsen can be reached at 369-3322, enilsen@cmonitor.com or on Twitter @ella_nilsen.)