Do too many family-led heroin support groups sap their effectiveness?

CINCINNATI — As heroin claims the lives of a rising number of Tri-State residents, family-led support groups and organizations to fight the epidemic are popping up regularly.

“Family members learn a lot, and they feel like, ‘If I had just known this ahead of time, I could have prevented this.’ There’s also the thought of, ‘I do not want my child (or loved one) to die in vain,’” said Ann Barnum, vice president of Interact for Health.

It’s a phenomenon that has addiction and grief experts divided about whether too many similar heroin-fighting groups are drowning themselves out and loosing effectiveness or whether there’s room for even more.

Why Create Groups Instead of Join Them?

Helen Magers, a clinical counselor in Cincinnati who specializes in addiction and trauma, regularly works with clients who are grieving.

Starting an organization to fight what killed a loved one is a common way to deal with grief, she said.

“It feels like taking control. They haven’t had any control over their family member who was using. Heroin almost becomes personified. It becomes the enemy, and I think family members often feel so helpless when this their loved one dies from an overdose they grab on to something that they can control,” Magers said.

When Kim Sefton lost her 21-year-old son Jake to a heroin overdose in 2015, it took her two months to learn what really killed him.

He was fully functioning at home and in his job as a nurse. There were no signs of heroin use, she said.

That’s why she decided she needed to warn other parents — or at least do something so her son’s death could have a purpose.

In her search for groups to join, she said she found nothing close to her rural Butler County home and few groups focused on awareness and prevention of heroin use.

“I just felt like I had to do something. If I didn’t do anything, I felt like I was part of the problem because nobody was really doing anything about it. I felt like it would be wrong not to and there was no choice,” she said.

That’s when she founded Heroin To Overcome, also known as H20. It’s a group, mostly formed with her inner circle of friends and neighbors, focused on cautioning the community about her son's story and similar ones.

“I wanted to reach people that have nieces and nephews they want to talk to. It’s not always about if you’ve lost someone directly. It’s people that are not in trouble yet,” Sefton said. "I wish somebody would have been there for me. I wish somebody would have said, 'Open your eyes.'"

The intimacy of a small group is a reason why some people prefer to create their own heroin-fighting organizations instead of joining forces with existing larger ones, experts said.

"Nobody really starts a charity or an organization totally thinking that they are going to completely irradiate heroin use but they go primarily, I think, for the support — for the emotional support of other people who have gone through the same thing. If you have a small group, you’re more likely to be heard than if it’s a larger group,” Magers said.

Many grieving families also opt to create their own group because they want the work they accomplish to be in their loved one’s name.

“They don’t want to end up joining with somebody else because that doesn’t honor that child or loved one in some people’s (minds),” Barnum said.

Are There Too Many Groups Fighting Heroin?

When Colleen Perry’s son Aaron overdosed on heroin and died inside a Paul Brown Stadium portable bathroom last year, creating an organization to fight the drug that killed her son was not in the cards.

Perry, who frequently shares her son’s story when she meets a new person, said she didn’t start a group because there are already too many local groups tackling the same thing.

"I think (family members) do it because they are so angry that this is like their outlet,” she said. "A lot of them are duplicative. They are all wanting to do the same thing — raise awareness. You have to really pick and choose which ones you want to follow or read about."

“I think they do lose (effectiveness). I’ll start with one and then I’m in another one that does the exact same thing,” Perry said.

Barnum understands the reasons why family members start their own groups, but she encourages people to join forces with powerful existing ones instead.

“Unfortunately, more groups is not the answer. More groups working in a coordinated way is part of the answer,” she said. “I think there’s probably always room for differences but most of the groups look very much the same."

She pointed to the Kentucky-based group People Advocating Recovery as an example of a organization that became effective because it consolidated with smaller groups and developed a larger voice.

Barnum said family-led groups tend to dissolve as quickly as they pop up.

“The cycle of grief is such that people do this for a while and then they’re not grieving as much and need to move on. Because they draw in a narrower group of people, there’s not enough people (to keep it going)," she said. 

Laura Jackson, a local addiction counselor at Catholic Charities, said there are not too many heroin-specific groups in the area.

“They are all interconnected anyway. Once you start meeting people involved in the cause of reducing heroin deaths, you seem to see a lot of the same faces. I think having many groups offers people many portals of entry. More likely to include more people, get the word out,” she said. “One may interest someone more than another, different strokes for different folks.”

For Sefton, joining forces with another group is not out of the question in the future — if location and her mission align.

“I still feel like I would jump on anybody’s bandwagon that was doing the same thing I’m doing because it’s too much work for me. I would love to help somebody else with the same cause,” she said.

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