October 24, 2021

Ending the stigma

Parents of children who died using opioids part of fight to change attitudes toward addiction

Todd R. McAdam

Kevin Russell, Cindy Russell, Dean O’Gorman and Karlene Shafer stand beneath a banner they created to call attention to opioid overdoses. The Russells’ son, Ryan, is on the far right in the banner. O’Gorman’s son, Spencer, is on the far left. Shafer’s daughter, Nicole Sherman, is to the upper left of Ryan Russell’s photo. Opioid overdose deaths in Cortland County dropped to four in 2018 from 14 a year earlier, state data show.

The four parents and a recovering addict leaned in as they talked about opioid addictions.

Much has changed since their children died — new attitudes, new resources, new efforts.

Much remains to be done, and behind their optimism, and their concern, is the stigma that comes with addiction.

Cindy Russell touched the necklace she had on with her son Ryan’s face embossed on it. She recalled the time she took Ryan to the hospital because he wasn’t feeling well and the nurse treated him as if he was a third-class citizen. Cindy and her husband, Kevin Russell, didn’t know their son was battling an addiction and was in withdrawal.

It’s three years since Ryan died at 27 from an overdose of heroin laced with fentanyl. The Russells said stigma related to addiction is changing — whether by admitting there’s a problem, treating addicts with more empathy or getting more resources for people dealing with addiction.

Karlene Shafer nodded. Dean O’Gorman and Kevin Donovan both assented from across the table.

Shafer lost her daughter, Nicole Sherman, in 2017 at 38 to an overdose, O’Gorman lost his son, Spencer, in 2017 at 22 and Donovan is a recovering addict.

The parents are part of the bereavement group 607-315 Healing Hearts for parents who have lost children to addiction. Since they lost their children more has been done to get access to treatment, they said. More people are trained to use naloxone. More are looking to shift the culture. More people talking about the issue. Just more.

The data

After a spike in the number of opioid-related deaths in 2017, and the number of people going to an emergency room during an overdose — and the number of people seeking treatment for addiction — all those numbers are down in 2018.

Down nearly 70%, in the case of overdose deaths, show data from the state Department of Health, returning roughly to pre- 2017 levels.

“Data does not adequately describe the burden,” Donovan said. “I think it’s important to not get lost in those numbers and those percentages because what we see on the ground and what we know to be true is that this is an acute crisis.”

“It’s still happening,” he added. “It’s going on all around us regardless of what the numbers may show for a given year.”

More naloxone kits have also been distributed, especially among non-emergency responders — to 416 in 2018 from 284 in 2016, said Catherine Feuerherm, director of the county health department.

“It’s creeping up a little bit each year,” she said. “Obviously we believe Narcan is a good thing. Every time it is used it gives people a second chance.”

Changing stigma

Spencer O’Gorman might have survived if the stigma associating shame with addiction didn’t cause a delay in efforts to revive him. O’Gorman said Spencer might have lived had naloxone been administered quickly, rather than a half-hour or more after the overdose began.

Addiction is not the movie scene of someone with ratty clothing heading into a dark alley and buying drugs, Shafer said. It could be anyone — a coworker, a relative, a friend, a random person walking down the street.

That’s just one of the stigmas the families are trying to break. They said people can’t sit in their living rooms and act as if addiction isn’t in their backyards if communities want to see change.

“A couple years ago, there weren’t a lot of people who would say my son or daughter died from an overdose; we want to prevent yours from dying,” said Donovan, the founder and program director of Healing Hearts Collaborative in Syracuse, an opioid abuse prevention program.

That has changed and Donovan said it’s because of people like O’Gorman, Shafer and the Russells, who share their stories.

“Addressing that stigma is huge and I think that people don’t realize the stigma exists within the people that are addicted and that prevents them from seeking treatment,” he said.

Russell said two days before her son overdosed, he came to her crying.

“He told me that he was the black sheep of the family,” she said. “He absolutely wasn’t, but he felt like the black sheep of the family because he had a drug problem.”

“As a person in recovery, my shame and my guilt and beating myself up over my addiction kept me in active addiction for a long time and it perpetuated relapse a couple of times,” Donovan said. “My family has been great, too, but I think the sad part is as awareness is increasing we see it out there, but a lot of people don’t internalize it until it’s too late.”

But if there’s community support, he said, it become easier to feel like one can get into recovery.

“Everybody is always like ‘It’s a choice, it’s choice,’” O’Gorman said. “It’s not always a choice. You got people who are on pain medication that’s prescribed and become addicted.”

Others, he added, have other underlying mental or emotional issues.

“Even if it was a choice,” Cindy Russell added. “How many bad choices have we all made in our lives?”

Harm reduction

Ryan Russell sought treatment for his addiction several times, but couldn’t get into a program. Few facilities had space and those that did were for brief, 30-day periods, not ongoing support for people who will deal with addiction for the rest of their lives.

He relapsed and overdosed, instead.

There are a number of counties, including Cortland, which are implementing more harm reduction programs. These programs acknowledge that people will use drugs or relapse and that there may not be treatment space for everyone and gives them avenues to getting help or preventing deaths from overdoses.

“It says, ‘How can we keep those people safe and alive without judging them?’” Donovan said. “We’re talking about people, let’s give them as many chances as we can.”

Cortland County has developed a number of new ways to provide people with another chance:

n Guthrie Cortland Regional Medical Center: In 2016, the hospital’s emergency room department staff, overseen by Dr. Russ Firman, decided to cut the amount of opioids it prescribed and have deeper conversations with patients to get to the root cause of issues that may lead to addiction.

“That was the first step of saying we own this a little bit, we, need to cut down opioids,” he said.

It cut opioid prescriptions in half in 15 months, and reduced the number of pills per prescription, too.

There’s also been a shift in the hospital’s culture toward addictions, he said. “No longer do we treat people with judgment.”

The hospital also recently began administering suboxone — which is used to help with withdrawal symptoms. A person would come into the emergency room and a doctor would give them the name of provider who would give them a prescription of suboxone and then they could get it administered at the hospital.

“None of us are prescribers, but we don’t have to be,” Firman said. “We just need to start them on it.”

About two years ago, the hospital started administering suboxone to people in the hospital for longer periods so they wouldn’t sign themselves out to go get more drugs to stop the withdrawal symptoms. While in the hospital a doctor can discuss recovery programs and providers.

“Some people aren’t willing to talk about it, but when they are ready we have a culture that’s there to support and help,” Firman said.

The hospital has also added a box to drop off unwanted medication — the first non-police box in Cortland County — with money from the Rotary Club. It also partnered with the state for an overdose prevention program: When overdose patients leave the hospital, they or a relative gets a naloxone kit and training.

“We just give it to them no questions asked,” he said. “We want people to have them in their homes.”

n The Angel Program: Under the Angel Program, drug users can surrender themselves, their drugs and paraphernalia to city police and ask for treatment. If the addict does not have any warrants or detainers, police will contact an “angel,” who will sit with the participant until that person is taken to Helio Health clinic by someone from Centers of Treatment Innovations.

n Cortland County Health Department: The Cortland County Health Department has for years pushed naloxone training on police, first responders and anyone who might come in contact with someone who might overdose on opioids.

“We have a fairly comprehensive approach from all angles for this,” Health Director Catherine Feuerherm has said.

Courtney McCallen, a public health educator who teaches people to administer naloxone, said the good thing about administering naloxone without knowing what the person took is that it won’t hurt them.

Naloxone isn’t an automatic lifesaver, she said. If enough opioids remain in the system, the patient could slip back into overdose. But it buys 30 to 90 minutes to get help.

Since 2015, The county Health Department has trained more than 1,000 people to use naloxone.

Doing more

Nicole Sherman had been dealing with addiction. She had gone through rehab, returned to live with Shafer and Sherman’s son. Her son went to work one day; when he returned home, he found her. She had overdosed.

While much has changed in Cortland over the past few years, more needs to be done, the families said.

O’Gorman supports anything that helps someone who is addicted, but there are a few things he’d particularly like to see: getting more people trained to use naloxone; having a needle exchange program so addicts can be safer and have easier access to treatment, while reducing needles in neighborhoods. He also wants to make signing oneself out of hospital more difficult for addicts following an overdose.

Another big issue for Donovan is access to treatment.

“I think the bottom line is that it needs to be easier for people to access treatment then it is for them to access drugs,” Donovan said. Treatment can’t be limited to a month, either, the parents said. Some may need help for a year. Some may need more still. Addiction lasts a lifetime.

They also said more publicity for groups that help people both with addiction and for those who have lost someone to addiction would help change the stigma.

“Our stories are different, but our end result is the same,” Shafer said. “It’s everywhere and you just want to help them all, but if we can save one person, one family from going through what we’re going through, then putting ourselves out there makes it worth it.”