Addiction's Toll: 129 Families Share Their Loss on Capitol Hill

Four weeks ago, Emmett Scannell, a sophomore at Worcester State University on a full academic scholarship, died of a heroin overdose. "We never would have thought that heroin would come into his life and steal him from us," said Scannell’s mother, Aimee D’Arpino. "But it did, just six weeks after entering college."

Because of medical privacy laws, D'Arpino wasn’t notified of the seven overdoses Scannell had suffered – and survived -- over an 18 month period. She says he got a “quick, spin-dry detox” in the emergency rooms he ended up in but couldn’t access real treatment because his insurance company said it wasn’t “medically necessary.”

Had he gotten treatment -- had she had all the information -- would he still be alive today?

"Those are questions I can't answer," she said. "And we're here today because we don't want other parents to have those same unanswered questions when they're thinking about their children."

D’Arpino stood outside the U.S. Capitol Thursday with her 9-year-old daughter, Alice, cowering against her and her 18-year-old son, Zachary, also in the crowd. They were one of 129 families gathered there to tell the stories of loved ones they lost, or nearly lost, to opioid addiction, and to ask Congress to finish their work on opioid legislation.

The number 129 is significant. Every day, 129 people die from substance abuse and addiction. “That’s like two commuter planes crashing daily, or an entire high school graduating class that we lose,” said Jessica Nickel, executive director of the Addiction Policy Forum. “And we have done so little about it for so long -- until, maybe, now.”

The House passed 18 related bills last week, and the Senate passed its bill in March. The two need to be conferenced together so that one consensus bill can be sent to the president for his signature – within the next few weeks, they hope. Yesterday, some of these families spoke at a hearing of the House Bipartisan Task Force to Combat the Heroin Epidemic.

“Washington will not solve the problem,” said Ohio Sen. Rob Portman. “But we can be better partners.”

For Nickel, this work isn’t just a job. Both of her parents were heroin addicts, and she spent parts of her childhood homeless and in foster care. She lost four uncles and three aunts to addiction. Her father died while on a waitlist for treatment that never materialized.

Every week, Sharon LeGore of York, Pennsylvania, visits her two sons in two different prisons, as well as her grandson, who’s in a detention facility because he has no parent who can take care of him. She can’t visit her daughter, Angela, who died of a heroin overdose in 1998.

The passage of bills through both chambers of Congress is a huge step, but advocates and members of Congress note that there still has not been a single dollar of new money appropriated to address the opioid addiction crisis. “In 2014, Ebola took the lives of 14,000 people,” said Gary Mendell of Easton, Connecticut. “Congress appropriated $5 billion in emergency funding. The overprescribing of opiates has taken the lives of almost 15 times that number.”

Mendell is a former hotel magnate who now runs a nonprofit, Shatterproof, dedicating to ending addiction. Mendell’s son, Brian, lost his battle with addiction in 2011. Gary Mendell said that they were together, Brian said to him, “Dad, someday, people will realize I’m not a bad kid. I just have a disease. And I am trying my absolute hardest.”

Michelle Jaskulski from Cudahy, Wisconsin, has never been one of the 129 mothers to lose a child on any given day to addiction, but she says she wakes up every day knowing she could be. “I’m here to bring a face to the 50,000 families that have someone currently struggling in active addiction,” she said.

Margot Head and Bill Williams of New York’s Upper West Side lost their son in 2012. Head calls it a “systemic failure.” Emergency rooms operate a “catch and release” program, she said, and the insurance company refused to pay for treatment, saying it wasn’t “medically necessary” despite 15 overdoses in a nine month period. “Insurance companies are deciding the fates of our children,” Head said.

Their son turned 24 in a coma. “He was in a coma for six weeks,” Head said. “But there was going to be no miracle.”

Jennifer Kelly of Tolland, Connecticut, has almost given up waiting for a miracle. Her 22-year-old daughter, Justice, has been in a coma for nine months.

“My daughter was home with me and overdosed," Kelly said. "I rushed her to the emergency room and she died in my vehicle. The emergency room staff was able to resuscitate her.” She’s now in a brain rehabilitation center in New Hampshire in a persistent vegetative state.

“I’ve lived for [nine] months full of hope that we would have some recovery but we haven’t had any," Kelly said. "The suggestion now has been to bring her home or to hospice. No parent should have to make those decisions."

"We haven’t fully decided what to do, but she’s just a shell of the girl that I once knew.”

The families will spend the next two days visiting Congressional offices to ask their lawmakers to come to a quick agreement on the bills and send them to the president, fully funded, within the next few weeks. All of these events – the lobby days, the press conference, the hearing – were organized in just 12 days as the House worked through its legislation.

The families were willing to come to Washington at a moment’s notice, most paying their own way, to tell their stories in hopes that 129 people won’t lose a child to addiction tomorrow.

Above: 129 families gathered in Washington, D.C., Thursday, to give voice to the struggle against addiction. 1. Sharon LeGore speaks of her ordeal outside the U.S. Capitol building, surrounded by other families impacted by opioid abuse. 2. Aimee D’Arpino lost a son and 9-year-old Alice lost a brother to heroin just four weeks ago. 3. Jennifer Kelly and sister Colleen Bridgeman, with a picture of Kelly’s daughter, who has been in a coma since August. 4. Margot Head and husband Bill Williams lost son William to addiction in 2012.