Jeff Cullen was a handsome, athletic young man. A great surfer, who loved goofy comedies like Dumb & Dumber and had an affinity for animals. Pretty much the stereotypical California Golden Boy, except for his long, serious problem with heroin.
On August 5, 2008, he signed up on a four-week waiting list for an intensive, six-month drug treatment program. He died later that evening. A heroin overdose. He was 27 years old.
"Jeff was in nine treatment facilities over 12 years," says his mother, Denise. "Neither he, nor we, his parents, were ever told about his risk of overdose or anything about overdose prevention, including naloxone."
Denise Cullen has since become an advocate through her grief-support organization, Broken No More. Her friend and fellow advocate Gretchen Bergman has also experienced the ordeal of her sons enduring opioid addiction.
"I was never informed about naloxone, even when the danger was so high," Bergman says. "Not when one of my boys would be released from jail. Not when they were on a waiting list for detox or a treatment facility. Not when they were showing signs of relapse."
Given what we know about overdose, these omissions are as unjustifiable as they are tragic.
Pretty much everyone - researchers, the Obama Administration, Fox News - is by now aware of the opioid overdose crisis. Drug overdose remains the leading cause of accidental death in the US, with 47,055 fatal overdoses in 2014. And around 61% of those deaths involved Rx opioids or heroin.
Presidential candidates have recently turned opioid addiction into the stump speech topic du jour. 60 Minutes, CNN, the New York Times, the guy in the cubicle next to you - they're all talking about heroin, prescription painkillers and overdose deaths.
They're also talking about naloxone - the drug that reverses opioid overdose, is simple to administer, and is increasingly available around the US, thanks to a raft of legislation across 44 states and counting, and support by major retailers such as CVS. By 2014, naloxone had been used to reverse over 10,000 overdoses in the US - and we can be sure the number has risen dramatically since, saving many more lives.
With naloxone now so readily available that even some jails are providing it to people on release, why are so many addiction treatment facilities failing to do the same?
Although data is lacking, experts' observations and anecdotal evidence overwhelmingly suggest that only a tiny minority of treatment facilities currently provide overdose education - including preventing, recognizing and responding to an overdose and the risks of mixing certain substances - or offer naloxone.
Eliza Wheeler of the Harm Reduction Coalition has worked on naloxone access for almost 15 years, tracking the uptake of distribution nationally. "I have spoken to so many parents that tell the same story," she says. "Their son or daughter was in treatment, they were doing well, they got out and used again and overdosed. No one in the treatment program ever talked to them about overdose or naloxone."
"It seems unconscionable to me that treatment programs have been so slow to incorporate overdose prevention information into their treatment and discharge planning," Wheeler continues. "If treatment professionals and programs feel like there is not enough evidence, please have them talk to some parents that have had to endure the greatest loss imaginable as their children leave treatment and lose their lives."
Major organizations are well aware of naloxone's ability to save lives. Leading health bodies in the US and abroad - including the American Medical Association, the American Public Health Association, the Substance Abuse and Mental Health Services Administration (SAMHSA), the Centers for Disease Control and Prevention (CDC), the American Society of Addiction Medicine, the World Health Organization and the UN Office on Drugs and Crime - endorse expanded access and use.
Yet drug treatment programs apparently haven't received the memo.
Julia Negron is another mom and advocate. Her entire life, including rock'n'roll marriages to Chuck Negron of Three Dog Night and John Densmore of The Doors, has revolved around drugs: using them, recovering from her addiction to them, and ultimately helping others to recover. She spent decades as a professional in the treatment industry. She watched her own son battle heroin like she had in the 1970s. And she's alive today because naloxone saved her. Twice.
"Time and time again my son was discharged from treatment programs having heard nothing about overdose prevention, much less been equipped with naloxone," she says. "Being discharged from treatment is exactly the point at which relapse risk and overdose prevention education must occur - not just saying to the client, 'Go to 12-step meetings and find a higher power.'"
This is critical because of two key factors: abstinence and tolerance.
The relationship between abstinence, tolerance, opioids and overdose has been well researched and documented for many years. According to the World Health Organization, a reduction in tolerance, seen when opioid use recommences after a period of abstinence, markedly increases the risk of an opioid overdose.
This commonly occurs during the first weeks after discharge from residential treatment or detox. Peer-reviewed research affirms the considerably heightened mortality risk in the month following treatment, demonstrating the need for overdose prevention education aimed at this population.
Opioid overdose is hardly a crisis that snuck up on us. These numbers have been climbing for around 15 years. Yet an abiding fixation in this field with abstinence as the only response to addiction - with a corresponding misperception that harm reduction measures are "enabling" - could be why many programs stubbornly refuse to tell their clients how not to die if they relapse after treatment.
Many also continue to eschew gold-standard practices such as medication-assisted treatment (MAT), including opiate maintenance drugs like methadone and buprenorphine, clinging to the belief that abstinence will work for all of their clients, forever.
But of course it won't. It doesn't for the thousands of people who cycle in and out of opioid treatment year after year. The National Institute on Drug Abuse (NIDA) acknowledges that approximately half of people treated for substance use disorders will relapse. The treatment industry has a responsibility to help protect those who do.
Maria "Alex" Alexander runs a program in California that provides job training and life skills to at-risk kids and adults overcoming obstacles. In the 14 years she's been drug-free, she has watched friends, colleagues and family be discharged from treatment with no information on how to prevent, recognize or respond to an overdose, nor any information about naloxone. She's frustrated and angry because it's personal for her. Naloxone saved her life five times. All of those times followed a period of abstinence and confinement, either in treatment or jail.
"I was never given any information on overdose prevention," she says. "It is heartbreaking to have staff of treatment centers and sober livings tell you, 'Treatment is overdose prevention.' It is not. There is simply no argument any more for refusing to educate patients and provide naloxone."
Recommendations and support for this already exist. The American College of Medical Toxicology, American College of Clinical Toxicology and the American Association of Poison Control Centers all support access to naloxone in both residential and non-residential addiction treatment programs, as well for people discharging from correctional facilities. Some excellent guides for treatment programs provide in-depth information about how to integrate overdose education and naloxone provision. SAMHSA clearly supports overdose prevention education and naloxone provision within an opioid treatment program context in their 2015 Federal Guidelines for Opioid Treatment Programs.
But although SAMHSA's 2013 National Survey of Substance Abuse Treatment Services indicates that the vast majority of respondents offer relapse prevention services, we don't know how many specifically provide overdose prevention education or naloxone, because it's not included in the survey.
Could starting to fix - or at least, measure - this problem be as simple as adding a few words to a code, a guideline or a survey?
While the treatment industry is largely failing to incorporate overdose education, there are some shining exceptions, as Eliza Wheeler acknowledges.
"I am excited to see treatment programs here and there throughout the US finally addressing overdose and providing access to naloxone," she says. "But it angers me how slow the progress has been. I'm still waiting for a final end to the outdated and disproven belief that by talking about the reality of drug use, relapse and overdose we are somehow encouraging someone to use drugs."
Tarzana Treatment Center in Los Angeles, California, for example, is an abstinence-based program helping to pioneer this reality-based approach to safety and health in post-rehab life. They provide overdose education in monthly group meetings, including information about naloxone and how to use it to save a life.
Their philosophy, articulated on their website, is both common-sense and cutting-edge. It should be replicated throughout the treatment industry:
"We are both grateful for this national effort that is using naloxone to reverse a terrifying trend, and proud to be in a position where we can help to potentially save a lot of lives.
Our goal with substance use treatment is abstinence for each and every client. Someday that may be a reality. For now, we accept that harm reduction needs to be a part of the journey to recovery for some addicts…
Naloxone's purpose is, hopefully, to be a one-time use drug that prevents an accidental death. Along with probably saving a life, the close call may and should be a gateway to getting on and staying on the road to recovery…
To put it bluntly; if they won't stop, we need to make sure they don't die and can have another chance at life."