What We Wish We Had Known…

August 2nd was the 5th anniversary of our son, John Leif’s, death by overdose from heroin. As we look back over the years, there is so much information available now than there was for the families of young people addicted to opioids in the early years of this century. So much we wish we had done differently with this son of our hearts – if we had only known.

In the early years of his addiction and recovery programs, we learned how co-dependency and enabling went part and parcel with alcoholism and addiction in family systems. We read all we could about it and worked hard to change from enabling and need-based love to detaching and loving with “tough love.” Sadly, as we now understand, tough love does not work for opioid addiction, because as Dr. Nora Volkow, director of the National Institute on Drug Abuse, says: “The concept of letting children hit bottom with opioids is not the best strategy, because in hitting bottom they may die.” Continue reading “What We Wish We Had Known…”

American Pain

From my earliest memories, I have had leg aches. They come on fairly suddenly for no apparent reason. It wasn’t until my 20’s when I figured out they related to the weather and changes in barometric pressure. I know, it sounds like folk-magic. But it’s true . As I was growing up, my parents would wrap my knees in stretch bandages and rub my legs with witch hazel. One thing they never did was offer me a pill for my pain. Never. In the pre-1980’s world, pain was part of life and mostly bearable.

My how things have changed. America­­­–with 5% of the world’s population–went from consuming less than 5% of the world’s prescription opioids in the 1960’s to now consuming some of the highest percentages of prescription opioids such as oxycodone, morphine, fentanyl, etc.

In 2015, John Temple,  an investigative journalist and journalism professor, wrote American Pain. It was one of three key books released that year in response to our opioid epidemic, the other two being Dreamland and The Big Fix. The title is taken from the “king” of the Florida pill mills, American Pain, a mega-clinic expressly created to serve addicts posing as patients. From a fortress-like former bank building with security guards, American Pain’s five doctors distributed massive quantities of oxycodone to hundreds of customers a day, mostly traffickers and those addicted, who came by the van load. Former strippers operated the pharmacy, counting out pills and stashing cash in garbage bags. Under their lab coats, the doctors carried guns. Continue reading “American Pain”

KNOW YOUR ENEMY

“Know your enemy” is a phrase that repeatedly returns to my mind when I am looking back on the years of our children’s adolescence. Regrettably, what we have learned is too late for our son, but not for millions of other sons and daughters. I believe that we are at war with an enemy that, as it is taking the lives of our children, it is also taking the future of our nation and our world.

If you know the enemy and know yourself,

         you need not fear the result of a hundred battles.

If you know yourself but not the enemy,

         for every victory gained you will also suffer a defeat.

If you know neither the enemy nor yourself,

          you will succumb in every battle.

The Art of War by Sun Tzu (Chinese military strategist, 5th century BC) Continue reading “KNOW YOUR ENEMY”

Coming Out of the Black Hole

In doing further research in support of the upcoming publication of our memoir, I have found many new groups, websites, and blogs about the opioid epidemic. It is very encouraging. And I was thinking back to 2005 when we first discovered that our son was using Black Tar Heroin. We were in an absolute black hole of information––there was nothing to be found on the internet or in our community, even though it had been a decade since this new way of producing and marketing heroin had hit the streets of the west coast. Eventually we discovered Black Tar Heroin: The Dark End of the Street, a1999 documentary directed by Steven Okazaki. Filmed from 1995-98 in San Francisco. Continue reading “Coming Out of the Black Hole”

No Magic Bullets

Last week here in Tucson, Arizona, some young people were together at a house using heroin. They were unaware it was laced with fentanyl. Friends ran to a nearby restaurant and flagged down police to help one person who was unresponsive from an overdose. He was revived with Narcan (naloxone). The officers were then taken to the house where six others had overdosed. One 19-yr old did not make it. Tucson Police all carry naloxone because they are usually the “first responders” to victims of overdose. Sadly, our Pima County Sheriff officers do not carry it – with the line of reasoning being that it is too costly for the training and they are not usually the first responders.

Naloxone (Narcan, Evzio, injectable or intranasal spray) was patented in 1961, and is an opioid antagonist—meaning that it binds to opioid receptors and can reverse and block the effects of other opioids by displacing them from the opioid receptor sites in the brain. Whereas an agonist causes an action, an antagonist blocks the action of the agonist. It has been used in hospital “code arrest” emergency situations for decades. It is being carried by emergency personnel and families of addicts because it can very quickly restore normal respiration to a person whose breathing has slowed or stopped as a result of overdosing with heroin or prescription opioid pain medications.

But it is not a magic bullet. Statistically, most opioid overdoses happen when the user is alone. By the time they are found, usually many hours later, it is too late for resuscitation. Another reason is that public safety experts are concerned, and rightly so, because addicts may be less motivated to find a way to quit using opioids since they can be revived. Their family and friends will also feel less anxiety and less concerned about urging their addict to get long term help. A recent news special interviewed several opiate addicts who had been revived multiple times with naloxone. One was an older man who is a “career addict”. He has no real desire to get clean and carries naloxone in case any of his friends need it. The other was a young woman who had overdosed and been revived several times and had finally gone through a recovery program and is clean and sober. She is very thankful for the times she did not die because finally, finally she was able to get to the point where she wanted to leave her miserable life of addiction and be free. But let’s remember: she needed a recovery program option. We cannot just turn those addicted to opioids back onto the streets after reviving them.

She is an example of the recent statistics that it takes on average 10-12 recovery attempts before an opiate addict can stay clean and sober long-term. Ten to twelve. It is a fact that relates to the addictive quality of opioids. For many of those addicted to opiates, those 10-12 attempts will never happen without overdoses and then being revived with naloxone. We, as a society, must be willing to offer this chance to those who are trapped by addiction to substances that have poured onto our streets and into our schools at an unprecedented rate. Our son went through several recovery programs and was at the point of really wanting to be free of his addiction. But without the needed medication, such as Suboxone, his last relapse proved fatal. He died of a heroin overdose at 25 yrs old – alone. There was no magic bullet for him.

BLOG: MAT, Part 2

MAT––Medication Assisted Treatment. Dr. Hillary Kunins, a clinical addiction expert, dispels the notion that treating an addiction patient with medication is simply exchanging one drug with another. Here is a link for a 2 min video where Dr Kunins offers a simple explanation of why physical dependence is not the same as addiction.

Here are the drugs that are currently in use for opioid addiction. Methadone has historically been used for heroin addiction, since the early 1970’s, when it was authorized by the FDA but restricted to daily dispensing clinics. Because it is an opioid-like drug, it has tended to only keep addicts alive, but never really able to be drug-free.

Nearly a half-century ago, buprenorphine was developed in England, where chemists were competing to invent a less addictive painkiller than morphine––it turned out to be far more addictive. It is now sold as Subutex and is an opioid partial agonist. An agonist is a chemical that binds to a receptor and activates it, producing a biological response. Like heroin, buprenorphine attaches to the brain’s opioid receptors creating euphoria, but it does not plug in as completely, so its effects are reduced. It is slower acting and longer lasting, attenuating the rush of sensation and eliminating the plummets afterward. But there is still potential for abuse and it can produce side effects such as respiratory depression.

Naloxone (Narcan, Evzio, injectable or intranasal spray) was patented in 1961, and is an opioid antagonist—meaning that it binds to opioid receptors and can reverse and block the effects of other opioids by displacing them from the opioid receptor sites in the brain.Whereas an agonist causes an action, an antagonist blocks the action of the agonist. It has been used in hospital “code arrest” emergency situations for decades. It was used on me before a surgery when I had been given too much anesthesia and was beginning to go in to respiratory arrest. It is being carried by emergency personnel and families of addicts because it can very quickly restore normal respiration to a person whose breathing has slowed or stopped as a result of overdosing with heroin or prescription opioid pain medications.

Naltrexone (Vivitrol, monthly injection) is an opiate antagonist that is more slowly released than naloxone. It is primarily used to manage opioid dependence or alcohol dependence and abuse by blocking neural pathways to the brain for dopamine neurotransmitters. It requires going through complete withdrawals and detoxification first because it will not work until opioids are out of the system. People who try to take opioids after taking naltrexone are at risk for opioid overdose and death since it takes using large amount of opioids to overcome its effects.

Suboxone––four parts buprenorphine, one part naloxone––was approved by the FDA in late 2002. Generally, although not accurate, when the word “buprenorphine” is used, people are referring to Suboxone. In addition to side effects from the buprenorphine in Suboxone, if a person has been taking it for a long time and they no longer receive it, they will suffer withdrawal symptoms similar to those suffered when stopping other forms of opiates. And, suffering from these withdrawal symptoms can worsen underlying mental disorders like anxiety or depression. At times, withdrawal can become overwhelming, which happened to jL, which sends patients into buprenorphine abuse and dependency. This has created a debate over the use of Suboxone and Subutex for addiction treatment.

A new study in The Lancet (January 27, 2018), sponsored by the National Institute on Drug Abuse (NIDA), compared the effectiveness of extended-release naltrexone with buprenorphine-naloxone in the US. The results were both promising and disappointing. While naltrexone is as effective as buprenorphine-naloxone once treatment begins, it is also significantly more difficult to actually start naltrexone because of the prolonged detox period—which can span more than a week—that buprenorphine-naloxone does not.

The biggest regret we have had since our son’s death in 2014 is that we did not take his doctors advice and have John Leif on Suboxone. There were many reasons that went into this decision, but the main one was that our health insurance did not pay the costs for any “mental health” coverage. Since we had so many years of our son’s relapses and recovery expenses, we decided to let him just “try harder” with the 12-steps and a sober living house. Sadly, it was not enough for a young man who desperately wanted to be clean and free of his enslaving addiction––he need MAT and we believe he would be alive today if he had been given that option.

Finding Help Thru The Maze

My husband and I just returned from a wonder-full vacation in Europe. We felt privileged and blessed in every way. Although we were enjoying our new experiences together, our son’s death from a heroin overdose was never far below the surface. We carry a lingering pain, knowing that although we tried our best to help our son, the three of us could never seem to find our way through the maze of dead ends and wrong turns for the right treatment for his increasing dependence on the substance that would eventually take his life.

While we were in the Netherlands, my husband, a pharmaceutical scientist, was contacted by a client and asked to analyze data from a drug study that was being conducted 15 minutes away from where we were. The human study, in those with opioid addiction and the control group without, is searching for a better medical approach to help addicts when they want to become clean and sober.

Half a world away from home we were reminded of people struggling with opioid addiction. And half a world away, there is still shame and stigma attached to being an addict, and there are parents, families, and friends living with the pain of watching someone they love not actually living life but hanging on from day to day, never knowing when their loved one will be another statistic in the world-wide epidemic in which there are few viable options for help.

The ongoing opioid crisis has drawn attention to the widening gap between the high need and limited access to substance use treatment in the United States. A recent Substance Abuse and Mental Health Services Administration report found that of 21.7 million Americans in need of substance use disorder treatment, only 2.35 million received treatment at a specialty facility. This led to a new study recently published in the Journal of Addiction Medicine, where several researchers and physicians searched for the predominant barriers for addicts receiving treatment (https://scienmag.com/study-looks-at-barriers-to-getting-treatment-for-substance-use-disorders).

Four broad themes were identified:
Patient Eligibility – Difficulties in determining patient eligibility for a particular and appropriate treatment center.
Treatment Capacity – Even if a patient is eligible, providers have trouble finding out whether space is available.
Knowledge of Treatment Options – Health care providers may not understand the levels of available and appropriate care for substance use treatment.
Communication – Difficulties in communication between referring providers and treatment facilities contribute to delays to starting treatment. The need for direct referral – “from the emergency department to a bed” – is particularly high for patients with opioid use disorders.

“Access to substance use disorder treatment is often a maze that can be difficult to navigate for both providers and patients,” Dr. Blevins and coauthors write. Yes, and it was even more so for those of us who found our teenager using heroin in the early 2000’s. No one was talking, our doctors had no experience with opioid addiction, treatment options were extremely hard to find and expensive, and for many of us, not covered by insurance.

For those of us who tried so hard to maneuver our way through the maze, we continue to live with the pain from feeling that we failed our son in a million different ways, while we tried so hard to get it right. May our being open about our experiences help those of you still living a tension-filled life find the answers you need to get you through the maze quickly so there may be a different outcome for you or your loved one.