Fentanyl & Breathing Under Water

BREATHING UNDER WATER

I built my house by the sea.
Not on the sands, mind you;
not on the shifting sand.
I built it of rock.

A strong house
by a strong sea.
And we got well acquainted, the sea and I.
Good neighbors.
Not that we spoke much.
We met in silences.
Respectful, keeping our distance,
but looking our thoughts across the fence of sand.
Always, the fence of sand our barrier, always, the sand between.

And then one day,
-and I still don’t know how it happened –
the sea came.
Without warning.

Without welcome, even
Not sudden and swift, but a shifting across the sand like wine,
less like the flow of water than the flow of blood.
Slow, but coming.
Slow, but flowing like an open wound.
And I thought of flight and I thought of drowning and I thought of death.
And while I thought the sea crept higher, till it reached my door.

And I knew, then, there was neither flight, nor death, nor drowning.
That when the sea comes calling, you stop being neighbors,
Well acquainted, friendly-at-a-distance neighbors,
And you give your house for a coral castle,
And you learn to breathe underwater.

(Sr. Carol Bieleck, RSCJ, from an unpublished work)

I first heard this poem as it was read at our son’s memorial by the director of a recovery program we had attended with JL in Tucson. It is full of spiritual metaphors and allusions to addictive behaviors. It came back to me this week as I received the latest information on fentanyl deaths in a report from the Centers for Disease Control (CDC), summarized by CNN:
Fentanyl deaths skyrocketed more than 1,000% over six years in the US.
By Nadia Kounang, CNN, 03/21/2019
https://www.cnn.com/2019/03/21/health/fentanyl-deaths-increase-study/index.html

Continue reading “Fentanyl & Breathing Under Water”

Memories

I am surprised when, although it has been over four years since our son died of a heroin overdose, memories surface and grief follows. The surprise comes because the memories seem to come ‘out of the blue’, from no particular trigger and for no particular reason.

My husband just had a memory that was triggered when he heard our seven year old granddaughter express trepidation over seeing a bird that had died and fallen into the back yard. It was as if our son was seven again, full of wonder and normal childhood fears. His voice, his emotions, him.

I have had memories of our son as I’ve been working in our daughter’s garden or driving to the grocery store. JL as a young adult, just his face in some everyday interaction, triggering the sadness that he is no longer on this earth, part of our life, living the life that most 29 year olds are living.

It seems that memories don’t need a reason to rise to the surface from out of our hearts. Our son has been in our hearts since the day he was born and he continues to live there. It is the strongest ‘evidence’ we have that life does not stop after we die and physically leave the land of the living. We are eternal beings and I am very thankful for that.

Change Our Way of Thinking

In the 1970’s, Bob Dylan sang: “We’ve got to change our way of thinking, make ourselves a different set of rules…”

I thought about this song recently as I remember how differently we, as parents of an opiate/heroin user, thought a decade ago. We thought, and were taught, that if our son just worked the 12-Steps hard enough he could gain lasting sobriety.

We had an abrupt and jolting wake up call on August 2nd, 2014. And what we have learned since our son’s death is that it’s just not that simple. Yes, there are opiate addicts – better, those with Substance Use Disorder – who have survived this deadly addiction without Medication Assisted Treatment (MAT), but they are few and far between. And they did not achieve sobriety with one attempt.

Last week,I heard an update on the current Ebola outbreak in the Congo. Two hundred people have died already and those fighting the battle are using every resource possible to contain it. It is terrible.

What if we treated the opioid epidemic with the same urgency and resources?

A sheriff in a county near Seattle had a similar epiphany last year after he was elected sheriff. He toured the jail and and saw it had become a de facto detox center full of very, very sick people. TY Trenary said: “Detoxing from heroin is like having the worst possible stomach virus you can have. People are proned out, just suffering.”

Last year, leaders declared the opioid epidemic a life-threatening emergency. The county is now responding to the drug crisis as if it were a natural disaster, the same way it would mobilize to respond to a landslide or flu pandemic.

The county’s program includes small steps, like making transportation easier for people in drug treatment. They train family members and others in the community on steps to reverse overdoses with medicine, and they send teams of police officers and social workers to help addicted homeless people.

The new approach is paying off. The teams have helped hundreds of people find housing and drug treatment.

I have changed my way of thinking – how about you?

https://www.npr.org/sections/health-shots/2018/10/28/658476111/a-rural-community-decided-to-treat-its-opioid-problem-like-a-natural-disaster%20?utm_source=npr_newsletter&utm_medium=email&utm_content=20181104&utm_campaign=&utm_term=

STIGMA, Part 2: How to Remove Stigma

Although name-calling is childish and something most parents teach our kids to not do––even when provoked––it’s surprising how many families use it as a weapon and carry its poison into adulthood. The name-calling and negative labeling we have been subjected to from prominent political leaders in the past few years must have been learned at home and seems effective with others who are similarly immature. I was raised with the saying, “Sticks and stones may break my bones, but words will never hurt me” as a way to deflect hurtful, shaming words. As I came to realize when I grew up, it is the farthest thing from true. Negative labels stick like glue to our hearts and souls, and for those struggling with addiction and alcoholism, come to define them––especially to themselves.

When words are dismissive and disdainful they telegraph judgment of addiction as a moral failure, chosen and desired, for which a person deserves to be shamed. Let’s change our vocabulary with true words that describe addiction for what it is: a chronic disease of the brain. Change the inaccurate and stigmatized word “abuse” to “substance-use disorder”: a health issue that can be treated successfully with medication, group involvement and support, and therapy.

Hazelden says their “fundamental addiction stigma-smashing strategy is to shine a light on people who are in recovery and expose the reality that people actually do recover from addiction; that it’s a chronic disease that can be successfully managed for life; and that it affects individuals who are every bit as moral, productive, intelligent, talented—and humanly flawed—as the next person.” That means you and me.

Also, educating health care professionals is very important as they work on the front lines in many areas: in prescribing medications and monitoring patients more closely in order to get them the right help as early as possible. They need the basic knowledge to recognize substance use disorders, understanding the complexity of the disease and the recovery process. Statistics show that physicians are still over-prescribing opiate pain medications, especially after accidents and surgeries, and not making use of physical therapy for pain management. In Dr. Jana Burson’s blog about stigma she cites one doctor who is pro-stigma, saying is “a good thing because stigma discourages deviant behavior and has a civilizing effect on society… and people with substance use disorders are irresponsible.” This doctor said of people who relapse back to drug use repeatedly “it is a behavior almost always under one’s control…” Dr. Burson says, “Loss of control over substance use is one of the hallmark criteria for the diagnosis of substance use disorder.” See her blog for the remainder of this important discussion.

https://janaburson.wordpress.com/2018/07/16/stigma-and-substance-use-disorders/

And prevention. This is the best weapon we have to fight against the epidemic that is taking the lives of over 70,000 mostly young people every year in our country. Trying to stop the immoral manufacturers of addictive drugs in illicit labs in China and Mexico––and by big Pharma in US––is a lofty goal and worth continued effort. But those drugs would have limited consumers if we focus our attention on clearly and openly teaching our children about drug and alcohol addiction from an early age and continuing the dialogue as they mature and experiment. And yes, even as some of our own children become the the 20% who find that, among all of their friends that try the same drugs at a party, they are the ones who can’t just walk away, they would know they can come to us without shame and stigma and ask for help.
The AMA and Am. Society of Addiction Medicine (ASAM) have a good article on stigma:
https://www.asam.org/resources/publications/magazine/read/article/2015/12/15/patients-with-a-substance-use-disorder-need-treatment—not-stigma

SAFETY NETS

On August 7, 2018, Rolling Stone reported that Demi Lovato was given Narcan (naloxone) by paramedics in response to a drug overdose after 6 years of sobriety.“I want to thank God for keeping me alive and well,” she said. Yes, God – He works through people and available medications. After 2 weeks in the hospital, she entered rehab. I imagine she has health insurance for hospital expenses and the rehab costs should be no question considering her career.

But how many other Americans battling addiction are not insured – or under-insured – or insured without mental health or rehab coverage, as our son was? And how many can afford the costs of detox, rehab, medications, and long-term recovery programs? Here are some average costs:
Outpatient detox: $1500
Inpatient rehab: 30 days, up to $30,000 / 60-90 days, up to $90,000 or more
Medication: Methadone $5,000 yr / Suboxone $200-600 mo
Sober Living Homes: $500-$2000 mo

Opioid addiction needs detox, rehab, medication, and then – as has been proven time and time again – at least a year of sober living and perhaps a lifetime of medication – along with a 12-step community. Where is a student or an unemployed or under-insured addict supposed to go when there are no safety nets in our society?

The New York Times August 8, 2018 article “Too Little Too Late: Bankruptcy Booms Among Older Americans” – another group for whom safety nets have disappeared. In a study from the Consumer Bankruptcy Project, “A three-decade shift of financial risk has occurred from government and employers to individuals – who are bearing an ever-greater responsibility for their own financial well-being as the social safety net shrinks…older Americans turn to what little is left – bankruptcy court.”

We, as a society, should be ashamed of this. Are we so independently minded and lacking in empathy that we cannot accept the need to collectively care for the weak among us – those in need – with social safety nets? In previous generations, families took care of their own – from birth until death. But as modern society has shifted from rural and communal to urban and individualistic, there is a need for we as a society to have safety nets in place.

Our daughter and family live in Australia. They are the beneficiaries of one of the best single-pay health systems in the world. When we tell friends about it, the response is, “They have socialized medicine, right? They can’t get medical care when they need it and people die on the streets.” As the conversation continues, we hear they are a socialist country and lack freedoms we enjoy. None of this is true. They enjoy a very good standard of living and pay higher taxes – taxes that provide a safety net for each and every citizen.

As the opioid epidemic continues to take the lives of so many, leaving families destroyed, we need to not only acknowledge that addiction is a disease that can be treated with medication, rehab, and community, but also fight for a health insurance system – a social safety net – that cares for Americans from birth through death.

 

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.

Medication Assisted Treatment – Part 1

Medication Assisted Treatment, or MAT, is finally gaining acceptance as a response to drug addiction in the US––it is a cultural shift from the view that addiction is a “moral failure.” The Hazelden Betty Ford Foundation, one of the top drug treatment providers in the country, used to subscribe almost exclusively to the abstinence-only model, based on an interpretation of the 12 steps of Alcoholics Anonymous and Narcotics Anonymous popularized in American addiction treatment in the past several decades. But in 2012, they announced they would begin providing MAT. There are four opioid substitutes that are used for MAT in opioid addiction: methadone, buprenorphine, naloxone, and naltrexone. More on these in the next blog.

November 6, 2013, the New York Times did an extensive article discussing the development, use, and risks of opioid substitutes, in particular bupreorphine and the combination drug, Suboxone. The author explaining that “While addiction is considered a chronic, relapsing disease, experts believe that replacing illegal drugs with legal ones, needles with pills, or more dangerous opioids with safer ones reduces the harm to addicts and to society. Addicts develop a tolerance to its euphoric effects and describe themselves as normalized by it, their cravings satisfied. It also diminishes the effects of other opioids but, studies have shown, does not entirely block them, even at the highest recommended doses.”

In a Frontline report in 2016, one of the doctors who specializes in addiction medicine related that doctors are limited by the DEA to treat only 100 patients per year with Suboxone. The thought behind this law is that they don’t want it to be abused––and it can be abused, as a commodity sold on the street to ward of withdrawals or for those who cannot afford the cost of a doctor and the medication. Our family faced the dilemma of the high costs for the doctors visits and the Suboxone because they were not covered by our son’s health insurance. We made the decision for him to not use this option, all hoping that a sober living house and meetings would help him succeed in his desire for sobriety. He was dead from a heroin overdose 7 months later.

The physician on Frontline pointed out the contradiction––the contradiction that has frustrated me and my husband for years––that there is still no limit on how many oxycodone or other opioid prescriptions physicians can write—the very abuse of which is documented to be fueling the opiate epidemic and creating the need for Suboxone. I personally experienced this absurd mentality towards opiates when my oral surgeon sent me home with 60 Vicodin after a root canal––60. I used two. He is the same oral surgeon who did JL’s wisdom teeth extraction and gave him multiple prescriptions for Percocet two weeks before and two weeks after the surgery––which fueled his relapse on heroin and ultimately, his death. He should have his license revoked.

As of a 2017 report by SAMHSA (Substance Abuse and Mental Health Services Administration), physicians who have prescribed buprenorphine/Suboxone to 100 patients for at least one year can now apply to increase their patient limits to 275 under new federal regulations. It is good to see movement in the right direction and I hope there will be more progress soon, especially in terms of making medication options a covered public health care benefit available to addicts who want to get their lives back.