STIGMA, Part 1: What and Why

In the Greek and Latin worlds, a stigma was a mark or brand, especially for a slave, identifying the person as “inferior”. When stigma began to be used in English, it meant the kind of mark or stain you can’t actually see. (Merriam-Webster). Social stigmas are based on perceivable characteristics, associated with certain behaviors that distinguish a person from other members of society. They convey disapproval and disgrace. Dis-approval. Non-approval. Dis-grace. Non-grace. Being dissed.

In an article on The Stigma of Addiction from Hazelden Recovery we learn: “The stigma of addiction stems from behavioral symptoms of substance use disorder… impaired judgment or erratic behavior, which can result in negative consequences including legal, occupational and relationship problems. Understandably, these consequences cause embarrassment and shame among those affected. They also create stigmatized attitudes and perceptions among the wider public, a response that perpetuates and exacerbates the private shame associated with drug addiction.For generations, this combination of personal shame and public stigma has produced tremendous obstacles to addressing the problem of alcoholism and addiction. Today, the stigma of addiction is seen as a primary barrier to effective addiction prevention, treatment and recovery efforts at the individual, family, societal levels. Addiction stigma prevents too many people from getting the help they need.” The article goes on to discuss the irony that many of these stigmatizing behaviors diminish and/or disappear when a person is appropriately treated in recovery.

In my family, and in most others, alcohol and drug addiction is considered private, and “is something only whispered about. Even when the symptoms of the disease are obvious to all around, individuals and families avoid seeking help for fear of even acknowledging the problem. This is one reason only one in 10 Americans with a substance use disorder receives professional care.” (ibid.) When talking recently with some of our son’s friends and former addicts, they are unwilling to let their past drug use become public knowledge because of the potential negative repercussions they justifiably fear in their careers and relationships. What does this say about us as individuals, communities, employers, and society in general?

Hazeldon, with almost 60 years experience treating alcohol and addiction, says “the same undercurrent of addiction stigma keeps addiction under-diagnosed, under-treated, under-funded and misunderstood by many, especially as compared to other chronic health conditions such as heart disease, asthma and diabetes.” Why? The individual is seen as having a moral failure instead of a health problem. I have an anecdote I share with people when we discuss addiction. When I have been given oral opiates when leaving the hospital after surgery, I take one or two and then opt for the pain because I hate the way they make me feel: disoriented, unable to sleep deeply, and not myself. My husband recently had surgery that he was warned would be painful for 4-6 weeks following the procedure. That was an understatement. He was given a prescription for 10 days of opiates. We thought that would be unnecessary. We were wrong. When he was taking the pain meds as prescribed, he was his normal, cheerful self – it was like magic. As soon as they wore off, he was cranky. Of course he was in pain, but it was more than that. Why?

For us, it’s not difficult to understand. He has the “addiction” gene, as we call it. There were alcoholics in both of our mothers’ families. He got the gene that I seemed to have dodged. Did he ask to have that gene passed down to him? Did he decide he would feel good taking opiates for pain? Of course not. And neither did our son. Nobody makes the decision on how their brain will react to different substances. It happens. The issue is what a person does once they know that a mind-altering substance spells “pleasure” to them? Do they keep a safe distance from it as John has done or do they play with fire? For parents with addiction in our family trees, prevention is our best and most powerful weapon. Two books to aid parents in prevention are:
The Teen Formula : A Parent’s Guide to Helping Your Child Avoid Substance Abuse By  Dr Dave Campbell and Drug-Proof Your Kids by Arteburn and Burns.

Had we known then – when our son was an adolescent – what we know now, we would have made significantly different decisions regarding our attitude towards pain medications, drugs, and alcohol – and especially begun discussing addiction in general and in our family in specific. I believe our son would still be alive if we had.

https://www.hazeldenbettyford.org/recovery-advocacy/stigma-of-addiction

A Different Death

Yesterday, my husband John, and I, along with family and friends, celebrated my father’s life of 92 years with a beautiful memorial service. He was buried with military honors for his service during WWII. In the week since his death, friends have asked me how I was feeling about his death – knowing that this death is the now the fifth death in my immediate family since 2001. First my younger brother at 40 from AIDS, then my sister at 56 from breast/brain cancer, then my son at 25 from a heroin overdose, then my other brother at 51 by suicide – and now my father.

This death, of a great-grandfather, is different than the previous four in so many ways. Not only do we expect grand-parents to pass away before their children, grandchildren, great-grandchildren, but we know by the 10th decade of life, the day to meet our maker is fast approaching. For my father, he was doing quite well mentally, but his health was declining rapidly this year. By August, we knew his days were numbered – and so did he. The dying know they are dying, and for my father, it made him sad. He loved life and he loved his family. And even though he had a strong Christian faith and confidence in waking up in a new and unimaginable existence with his loved ones who went before him, he still had a very natural trepidation of the process of dying.

His last two weeks were marked by no appetite and finally no ability to even drink – his body was done with this life. With John holding his hand, he took his last breath and his spirit left the room – and left this earth. How did I feel? Sad because we will no longer enjoy his presence, and his death marks the end of an era of the large Italian family dinners and parties. But I was also relieved that he was no longer suffering in a body that was giving out.

The unexpected death of our son from a heroin overdose was different in every way imaginable. I look back now and wonder how John and I made it – how we didn’t end up institutionalized under heavy medication. I remember in the first few months feeling that my mind was on the verge of splitting in two – my heart was already broken – but it is our minds that hold us together. The love and support from our close friends and family surely were part of that glue. But the real potion that caused us to not tip over the edge was the mercy and grace of God. Without Him, we wouldn’t have had the courage to go on or the strength to look ahead with hope of an eternity with our son and with our other family members.

For those of you with friends who have lost a child to a drug overdose, please remember that a sudden, unexpected, preventable death is different from all other losses. These deaths are not natural, the lives were not completed, the parents and family can not just move on. They need your love and support – and prayers.

The Best Laid Plans

Mac Miller – 26 year old rapper – died of an apparent overdose last week. One more beautiful young person lost in the prime of life. Friends and fans have unanimously said he was one of the sweetest guys they’d ever known with a great sense of humor. Miller spoke openly about his struggles with addiction over the years: “It just eats at your mind, doing drugs every single day, every second. It’s rough on your body.”

August 31st is International Overdose Awareness Day. I think we are all very aware of the enormous and continuing-to-rise number of drug––mostly opioid––overdose deaths. It is clear from conversations with many of the famous and not-famous users, like our son, that they have every intention of controlling their addiction and no intention of overdosing. But something goes wrong…

Dr. Jana Burson, an addiction treatment physician in North Carolina, has a great blog (https://janaburson.wordpress.com/) with insights gathered from her patients, many of whom are long-term opiate abusers. “I’m not gonna overdose. I know my limits.” Dr. Burson writes in August 2017: “I really hate hearing these words. Usually patients say this in response to my concerns about their pattern of drug use while I’m prescribing methadone or buprenorphine. But many patients feel they are the experts. They can’t imagine making a deadly mistake with their drug use. But I’ve heard this phrase from people who are now dead from overdoses.”

She recently cited a study in Australia 2013, where overdose deaths have risen steadily since 2007. In that country, unlike the U.S., heroin use is declining while prescription opioid misuse is rising. This study looked at non-fatal overdoses in very experienced people who inject drugs––an average of 21 years of IV drug use––half of whom were in a MAT (Medication Assisted Treatment) drug program.

Most of these overdoses happened in private homes––many the subjects said they were impaired by alcohol or benzodiazepines. Over a third of the subjects had used fentanyl, a very powerful illicit opioid, leading up to the overdose. The authors of the study concluded that these experienced drug users were aware of common risks for overdose, yet drug intoxication from sedatives such as alcohol or benzodiazepines may have clouded the user’s thinking when injecting opioids. They also found that unexpected availability of drugs contributed to overdoses.

This was our son’s story: It was his first night after 6 months in sober living––but it was not his first night using again. He had been on Percocet for oral surgery (a huge mistake) a month before he overdosed and then had returned to IV heroin use the week before his overdose. He had been drinking with friends the first night in his new apartment––his decision making abilities were impaired. We are not sure exactly how much heroin he injected, and since it was Black Tar heroin from Mexico, the strength is absolutely unpredictable. What we do know from the autopsy is that he had many times more heroin in his body than a fatal dose. His was an overdose that he would not survive. Was this his last conscious thought: “I’m not gonna overdose. I know my limits.”?

Epidemic Worsens, Hope Wains

In a March 6, 2018 public health report on NPR, Rob Stein reported the grim news on recent CDC statistics: across America, overdoses from opioids increased by an average of 30% in 2017––some areas were as high as 109% while others remained stable at 20%––occurring in every region and every age group of men and women. The latest data could underestimate the overdoses, because many people who overdose never end up in the emergency room (like our son) so are not accounted for.

“We think that the number of people addicted to opioids is relatively stable. But the substances are more dangerous than five years ago,” acting CDC Director Anne Schuchat says. “The margin of error for taking one of these substances is small now and people may not know what they have, due to availability of newer, highly potent illegal opioids, such as fentanyl.”

Sadly, 20 years on in the opioid epidemic, things are still worsening and government policies are doing nothing to help. Declaring it a “health emergency” but failing to fund quality public health care and the long-term recovery expenses that are essential for opiate recovery is creating a false sense of well-being when there is none.

“Emergency room staff need better training to make sure people with substance-use disorder get follow-up addiction treatment,” says Jessica Hulsey Nickel, president and CEO of the Addiction Policy Forum. “Too often, addicts are simply revived and sent home without follow-up care, only to overdose again. We can use this near-death experience—use it as moment to change that person’s life.”

These overdose deaths have contributed significantly to life expectancy in the US dropping for the second year in a row. This is alarming public health officials since life expectancy gives us insight into the health of a nation––the last time we had a drop was during the AIDS epidemic.

In another study about “Deaths of Despair”, Anne Case & Angus Deaton, economists at Princeton University, report “It’s also a crisis in which people are killing themselves in much larger numbers—whites especially. Deaths from alcohol have been rising as well––we think of it all being signs that something is really wrong and it is happening nationwide…The decline of well-paying jobs, security and good benefits may be fueling a sense of frustration and hopelessness,” Case says. “That may be one reason fewer people are getting married and having children outside of marriages.They have a much more fragile existence than they would have had a generation ago. As a result, these deaths are related to the fact that people don’t have the stability and a hope for the future that they might have had in the past.”

Hope for the future––something we all need––something that is increasingly hard to find in our fragmented society. Many, many voices are calling us to return to the basics for sustained human health and growth: real community, true spirituality, public and private integrity, simplicity of lifestyle, and sincere and tangible love for each other: love is a verb

https://www.npr.org/sections/health-shots/2018/03/06/590923149/jump-in-overdoses-shows-opioid-epidemic-has-worsened

https://www.npr.org/sections/health-shots/2017/12/21/572080314/life-expectancy-drops-again-as-opioid-deaths-surge-in-u-s

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 and decreases the desire to take opiates. 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.