PEORIA — Sue Tisdale of Canton had never heard of the drug naloxone until after her 28-year-old son died of an opioid overdose in 2015.
Today she is an expert.
Tisdale and her daughter, Jessica Kinsel, are working for the Human Service Center in Peoria to teach people about opioids and distribute overdose kits in 38 counties around the state through a $678,000 federal grant.
It’s part of a mission the Canton residents began after Richard “Duney” Long died at age 28. They founded the Overdose Awareness Walk held each summer in Canton and created a support group in Fulton County to help overdose survivors. After learning about naloxone, they began distributing it through a standing order from Dr. Tamara Olt, the founder of the JOLT Foundation and a Peoria physician who lost her son to opioid overdose in 2012.
Late last summer, when the Human Service Center was awarded a grant to distribute naloxone (often sold under brand name Narcan) and do opioid education around the state, Tisdale and Kinsel were recruited to help.
The work has been therapeutic, said Kinsel.
“That’s the only thing that pushed us to get through it — helping others,” said Kinsel. “It’s rewarding at times, like when we hear about someone who was saved. But then there is this pull, ‘if only we’d had that for Duney.’”
Naloxone's benefit: Time
Last September, Illinois joined the growing ranks of states making the antidote for opioid overdose available to everyone.
In the executive order establishing the Governor’s Opioid Prevention and Intervention Task Force, a standing order for naloxone was issued allowing people to purchase it without a prescription at participating pharmacies. The drug is also being given out for free at locations all over the state by various agencies, including the Human Service Center in Peoria.
The wide distribution of naloxone is an effort to reverse a frightening trend. The executive order projected more than 1,900 people would die of opioid overdoses in 2017 — more than one-and-a-half times the number of homicide victims, and nearly twice the number of fatal motor vehicle accidents.
“In the last two years we have seen an explosion of overdose death in Illinois, and a lot of that is a reflection of synthetic opioids being in the drug supply,” said Amanda Kim, head of strategic health initiatives for the Illinois Department of Public Health. “We realized we need to get on top of this before it gets worse.”
Synthetic opioids such as fentanyl and carfentanil — originally created to subdue elephants — are much stronger than heroin. A small amount can be fatal. Naloxone, which is given as a shot or a nasal spray, blocks the effect of the opioids in the brain. Breathing is restored and the person wakes up.
Studies have shown that overdose education and naloxone distribution programs work to lower the rate of opioid overdose death, Kim said.
“Naloxone is a critically important tool in fighting the opioid epidemic,” she said. “It saves lives and gives people the opportunity to make it onto the path to recovery. They need to be alive to get into treatment.”
Dr. Lewis Nelson, professor and chairman of the Department of Emergency Medicine at Rutgers New Jersey Medical School and director of the Division of Medical Toxicology, has been working on the frontlines of the opioid epidemic for several years. He started two naloxone distribution programs in the last three years — one in New York and one in New Jersey. He says the drug should be widely distributed and used, but cautions that it is not a benign intervention. While naloxone has zero effects when given to someone not under the influence, it has risks for opioid addicts.
“It puts you into withdrawal, which can occasionally be a life-threatening process,” Nelson said. People wake up sick, and sometimes combative. They could go back into overdose as the naloxone wears off, and if they use opioids again too soon, the consequences could be grave. Opioids stay in the blood for several hours even as the naloxone blocks its effects in the user’s brain. Using opioids during that time could be fatal.
People are encouraged to go to the hospital after getting naloxone, but frequently don’t.
“Despite our recommendation, they don’t come into the hospital for evaluation. They wake up and leave,” said Nelson, who is also concerned that bystanders are administering naloxone unnecessarily. Someone in the grip of a strong high may look like they are in distress, but may ultimately be fine. Administering naloxone may put opioid abusers into withdrawal.
Because of these issues, Nelson expressed concerns about how effective the widespread distribution of naloxone is in the effort to stem the rising tide of death.
“We know that it wakes people up. We all believe it’s a good thing to empower people the ability to overpower overdose, but we just don’t know if it’s saving lives,” he said.
Nelson stressed that long-term treatment is key to saving lives. He pointed to a study presented last fall by lead researcher Dr. Scott G. Weiner, an emergency physician at Brigham and Women's Hospital in Boston, which found that 10 percent of people who received a dose of naloxone died within one year.
"Naloxone doesn't save lives in many cases, it often just delays death," said Nelson. "You have to get connected with some form of treatment program to stop using opioids. Time to do this is the true benefit of naloxone for most people."
Destigmatizing the disease
Sue Tisdale believes her son would have survived his overdose if he’d had naloxone for his girlfriend to administer. Long likely overdosed because his tolerance was down after a six-month stint in jail on charges related to his drug use. Autopsy results showed he’d used small amounts of a variety of drugs, his sister said.
The days following release from incarceration are a dangerous time for addicts, Tisdale said. She knew her son would go back to his old life and habits and be stressed by the need to find work to support his two sons, who were 12 and 6 months old when he died. Tisdale tried to immediately get her son into a treatment program — it would have been his second time in rehab — but he put it off.
“He said there were things he needed to do first,” Tisdale said.
For many addicts, treatment is not easy to attain. Long paid for his treatment the first time he went to rehab, but many addicts don’t have the money, and it can take months to get into federal and state funded opioid treatment programs in central Illinois.
"Naloxone is an important tool for keeping addicts healthy until they are ready to get into treatment," said Chrissy Smith, program director for the Human Service Center in Peoria.
The drug is part of the harm reduction strategy taught to addicts served by the center. Since they are unable to stop using, clients are taught to be careful — go slow and use smaller doses because street drugs could contain anything, don’t use alone or lock the door, and keep naloxone handy.
The Human Service Center is a behavioral health care organization with comprehensive mental health and substance abuse services. It’s one of eight agencies across the state working to get naloxone into the hands of both emergency responders and the public through the Drug Overdose Prevention Program, a joint effort of the Illinois Department of Health and the Department of Alcohol and Substance Abuse, which is being funded with federal dollars allocated in the Comprehensive Addiction and Recovery Act of 2016. The Human Service Center, with the help of the JOLT Foundation and some independent contractors, has taken on the largest territory in the state — 38 counties, as far north as Jo Davies and as far south as Bond.
“We really care about this,” Smith said. “It’s important. We’ve been knocking on doors and cold calling. You have to really care.”
They began by contacting all the emergency responders in each county, including the volunteer departments.
“About 90 percent already had naloxone,” Tisdale said. “But some of the mid-size departments had been talking about it but not doing it.”
In recent months, educators have been reaching out to the general public. Each week Tisdale and fellow opioid educator Chris Schaffner have visited fire stations, schools, churches and community groups — basically anyone who will have them. They bring the overdose kits which each contain three retractable syringes and three doses of naloxone, and they explain how to administer the drug. They also talk about the opioid epidemic. Even more than naloxone, people want information, Tisdale said.
“That’s the big plus about this grant,” she said. “To let people know about the problem.”
Tisdale has spoken to people who don’t know anything about opioids or naloxone.
“They say, ‘We don’t have a drug problem,’” she said.
Tisdale didn’t know for a long time that her bright, funny son had become addicted. He was 15 when he and his friends started experimenting with prescription painkillers from their parents’ medicine cabinets. Many people start with prescription medicine — often for a legitimate medical issue — and later switch to street drugs, which are cheaper and easier to get.
Part of the reason to educate the public about the opioid epidemic is to erase stigma. Until it affects a loved one, most people think of addicts as that person on TV being resuscitated on a street corner. In truth, many addicts are functioning members of society just trying to get through the day, Smith said.
“There are those people (who have hit rock bottom), but a lot of it is ‘I use every day so I can function — so I can go to work and take my kid to school,’” said Smith. “It’s not about the high, it’s about being able to function and not get super sick.”
The effort is part of a sea change in the thinking about addiction. Once considered a personal weakness, experts now know that addiction is a progressive disease. Instead of punishing addicts as our society has done in the past, the trend is toward helping people recover.
“Addiction is an illness no different from diabetes or heart disease. It is brain-based,” said Amanda Kim, head of strategic health initiatives for the Illinois Department of Public Health. “We need to get that information out there and de-stigmatize it so the community can become supportive of these efforts, and people feel free to get into recovery.”
Leslie Renken can be reached at 686-3250 or lrenken@pjstar.com. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.