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Urgent: Recreational users need to know that killer chemical lurks everywhere, say parents whose kids died from fentanyl

Dylan Kai Sarantos, 18. Thought he was taking ecstasy. Died May 8 in Los Angeles.

Alexandra Capelouto, 20. Thought she was taking Percocet. Died Dec. 23 in Temecula.

In a donated ballroom in Columbus, Ohio, parents rose to their feet as their child’s name was read aloud. Many had endured the trauma of discovering their babies’ lifeless bodies.

Jessica and her dad, Steve Filson. (Courtesy Filson family)

Jessica Shely Filson, 29. Thought she was doing cocaine. Died Jan. 22 in Redlands. 

Alexander Hastings Neville, 14. Thought he was taking OxyContin. Died June 23 in Aliso Viejo.

By the time all 21 names were read aloud and all the parents were standing, tears streamed down the face of U.S. “drug czar” James W. Carroll, director of the White House Office of National Drug Control Policy. “It was a very powerful moment,” said Michael Gray of Long Island, who organized the national meeting on Oct. 26. “We had to wait for him. He was openly weeping, so he couldn’t speak.”

California was over-represented at this somber gathering of parents on a mission — parents whose children were killed by fentanyl, a cheap synthetic opioid some 50 to 100 times stronger than morphine. These kids were not hard-core addicts, their parents say: Many had just started to experiment, or were celebrating birthdays, or were seeking a thrill or trying to self-medicate a diagnosed mental illness. It only took one pill, one line of “cocaine,” one single incident, to kill them.

The ghastly terminology is “one and done,” and these parents are gently but firmly demanding a reboot of how America understands “accidental overdose deaths.”

“There was nothing accidental about Jessica’s death,” said Steven Filson of San Bernardino. “My daughter, and I would venture to say none of them, intentionally ingested something containing fentanyl. These are not overdoses. These are poisonings.”

Forgotten

Much of the huge spike in “accidental overdose” deaths over the last several years hasn’t been fueled by long-time addicts, these parents and number-crunchers say, but by first-time, intermittent and recreational users — “the largely forgotten constituency.”

They’re the casualties of a paradigm shift that began in 2013, when cheap fentanyl from China began showing up in drugs artfully manufactured in Mexico to masquerade, convincingly, as the real thing. Fentanyl has even been laced into marijuana to punch up the high.

Because it’s so powerful, and in the hands of amateurs, fentanyl turns every instance of drug use into a Russian Roulette with four bullets and two blanks, Gray has said. He calls it a weapon of mass destruction, wants dealers treated like terrorists and the nations that export the chemical sanctioned.

Other aching parents simply want it classified as drug-induced homicide and seek stiffer penalties commensurate with the crime.

There’s one thing they all want while legislation is pondered and drafted and debated: A major campaign to educate youngsters — and their parents — about the killer chemical that can render even the most neophyte experimenter “one and done.”

Alexander Neville, pictured during a trip to Palomar Mountain in 2019, died on June 23, 2020. (Photo courtesy of the Neville family)

” ‘Weapon of mass destruction’ is a really huge idea, but no matter what penalties you put on it, fentanyl’s going to be here,” said Amy Neville, mother of 14-year-old Alex, who died in June.

“Everyone in the world that will listen needs to know about fentanyl. It’s killing the long-term drug addicts and the first-time partygoers. It’s taking out anyone and everyone. Parents need to talk about this with their kids and kids need to understand that, if it’s not a prescription with their name on it, they shouldn’t take it. If they’re at a friend’s house and have a headache and the friend says, ‘Hey, I have something for that, try this,” they need to have that worm in their ear: ‘Fentanyl. Oh, wait. Fentanyl.’

“Put that worm in their ear. If I had that in my ear, my son would still be here.”

Gray’s daughter, Amanda Beatrice Rose Gray, 24, struggled with mental illness the last several years of her life. She’d feel an episode coming on and up her prescription of benzodiazapines, “turning off her brain” until it passed, much like a wolfman hiding away during the full moon, her father said. When a new psychiatrist decided to adjust her medications and it wasn’t working, she sought relief elsewhere. “She turned off her brain, permanently,” Gray said.

Amanda Beatrice Rose Gray died on Jan. 11, 2018. Lately, her mother has been yelling at the television. She’ll see a public service announcement for COVID and say, “They could pull those together in six months. Where are my TV commercials? This has been going on for six years. ‘That pill can kill. Don’t snort that powder. If they say they have a prescription and offer you a pill, they’re lying, don’t take it,’ ” said her husband.

Sounding the alarm and educating people is the most important thing right now, San Bernardino parent Filson said.

“There’s people dropping dead every day from all this crap. Something has to be done.”

Action

The parents of the 21 children represented in Ohio last week have thrown themselves into activism. The Nevilles formed the Alexander Neville Foundation, aiming to speak directly to middle and high school kids about unseen dangers and forever consequences. Gray has the Actus Foundation, aiming to change national policy and improve data collection. Filson works with DrugInducedHomicide.org trying to revamp criminal penalties, and the list goes on and on.

“This is not a grief support group,” Gray said. “This is a working group.”

The nearly two dozen parents who gathered in that ballroom last month with the drug czar and Ohio state officials have one very specific goal in mind: Replicate the successes that Candy Lightner had with Mothers Against Drunk Driving to change attitudes, and law, surrounding fentanyl.

On May 3, 1980, Lightner’s 13-year-old daughter Cari was walking to a church carnival with a friend when she was struck by a car with such force she was knocked out of her shoes and thrown 125 feet. The driver never stopped. It wasn’t his first time: He had been arrested earlier for another drunk-driving incident. When police told Lightner that the driver probably wouldn’t get much in the way of punishment, Lightner was enraged. “Death caused by drunk drivers is the only socially acceptable form of homicide,” she later told People magazine, channeling her anger and grief into the organization that became Mothers Against Drunk Driving, a national powerhouse pushing awareness and tougher laws across the nation.

“The vision is to be like MADD — there’s no difference with this,” Filson said. “You’re getting killed by a drunk driver or a drug distributor.”

The U.S. pours some $600 billion a year into battling addiction, but Gray fears officials are missing the point. These dollars go toward “legacy” drug policies — treatment and supports for long-term addicts. But that spending completely misses the segment of the population where overdose deaths are increasing most rapidly: Among the non-addicted, non-habitual users, “a population which is not even addressed by the thinking and policies of the old paradigm.”

The Centers for Disease Control maps three waves of opioid overdose deaths:

  • The first wave began in the 1990s, with increased prescribing of opioids. Deaths from natural and semi-synthetic opioids have been increasing since at least 1999.
  • The second wave began in 2010, with rapid increases in overdose deaths involving heroin.
  • The third wave began in 2013, with significant increases in overdose deaths involving synthetic opioids, particularly those involving illicitly manufactured fentanyl.

The market for illicit fentanyl continues to evolve, the CDC said, and the drug can now be found combined with heroin, counterfeit pills, cocaine and marijuana. The carnage is clearly related: All opioid-involved death rates decreased by 2% between 2017 and 2018. Prescription opioid-involved death rates decreased by 13.5%. Heroin-involved death rates decreased by 4%.

But synthetic opioid-involved death rates —fentanyl and its cousins — increased by 10%. All told, nearly a half-million people died from opioid overdoses between 1999 and 2018, the CDC said.

California at risk

Pandemic is only making the landscape bleaker.

In 2013, only 3% of overdose deaths in Los Angeles County involved fentanyl. In 2019, about one-third (32.8 percent) involved fentanyl. In the first seven months of 2020, fentanyl was responsible for nearly half, said Nicole Nishida, spokesperson for the U.S. Drug Enforcement Administration.

Data from the coroner’s office show there were 800 drug-caused deaths in Los Angeles County during the first seven months of 2019. That has leaped by 48 percent in the first seven months of this year — to 1,184, she said.

Nationally, the Overdose Detection Mapping Application Program reports that suspected overdoses rose 18 percent in March, 29 percent in April and 42 percent in May compared to those same months in 2019.

The carnage is particularly grim in California. While China has clamped down on fentanyl exports, the raw ingredients are still being shipped abroad and then manufactured into finished product in Mexico, according to the Brookings Institute. It’s flooding over the border and hitting the Golden State particularly hard: In that Ohio ballroom, eight of the 21 youngsters represented were from California.

The DEA has been cracking down on dealers. On Monday, a San Fernando Valley man was sentenced to 15 years in federal prison for selling fentanyl to a 22-year-old who died 20 minutes after ingesting the drug. Eric Kay, a longtime Angels public relations employee, was charged with conspiracy to distribute fentanyl after star pitcher Tyler Skaggs died last year.

Some parents think the charges should be more like murder and less like selling drugs, and are pushing legislators to that end. But education is the real weapon in this fight. The word needs to get out. People need to understand.

”This crisis-crosses all demographics,” said Filson, who is now raising his granddaughter. “We need education on a national level to wake everyone up. Our kids have to quit dying in this way.”

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