When your child is dying from cancer or another serious or terminal illness, people rally around you with support and comfort. You can freely talk about the disease, the course of treatment and how you are dealing with it.
There seems to be some unspoken rule, however, when that loved one is suffering from addiction. Unlike other diseases such as cancer, heart disease or diabetes, there is shame that surrounds the disease of addiction.
When my son was dying from opioid addiction, to me it felt like he had stage 4 cancer and only a miracle of God would save him from that terrible disease. I wanted to talk about it. I needed to talk about it. I did talk about it. I found not everyone was comfortable when I broke that unspoken rule that says you're not supposed to speak openly and candidly about addiction.
When I spoke candidly about his disease and treatment options, I often got that awkward silence and a look of shock and disbelief that led quickly to a change in subject. I decided years ago that I was going to ignore that stigma and do what I could to make a change. I would simply pretend stigma didn't exist and speak freely about our circumstances. I must say, there were many that listened caringly and empathetically, and for that I am grateful. But that dark cloud of shame still hovered over. I felt it, so I can only imagine what it must have felt like to my son.
He expressed to me the guilt and shame he felt over a disease that he really had no more control over at the time than someone suffering from any other serious illness. He didn't decide one day that he wanted to be an addict. I have yet to speak to anyone suffering from addiction who says that is what they wanted. My son didn't want it. I listened to him cry on many occasions and voice that he just wanted to be normal; that he wanted to be the son, brother, uncle, and grandson that his family deserved. Yet he made a choice one day to take that first pill, and shortly after it was no longer a choice for him. His body required that pill to function.
That cloud of shame, that unspoken rule, that stigma, is often a hindrance for those trying to reach out for help and seek much-needed treatment. That was the case for my son.
Sadly, even a proven treatment for opioid addiction such as buprenorphine carries with it a stigma. Medication Assisted Treatment (MAT) is the use of medications combined with counseling and behavioral therapy to treat substance use disorders. For someone struggling with opioid addiction, MAT relieves the withdrawal symptoms and psychological cravings that are experienced when the person makes the decision to stop taking or abusing opioids.
According to the National Institute of Drug Abuse, MAT decreases opioid use, opioid-related deaths, criminal activity, and infectious disease transmission. It increases social functioning and retention in treatment and improves outcomes in babies born to opioid-dependent pregnant women.
Still, MAT is widely underused. According to the CDC, in 2017, there were 47,600 opioid-related overdose deaths in the United States. If MAT is proven to reduce overdose deaths, why aren't more people with opioid addiction treated with MAT?
After a relapse following completion of a residential treatment program for opioid addiction, my son, desperate for help, enrolled in a Medication Assisted Treatment program at UAMS. While in the program he had friends and family tell him things such as "you're just trading one drug for another" and "you'll be on that the rest of your life." My son was discouraged from continuing a treatment that is proven to decrease the risk of overdose.
This stigma can also hinder the availability of MAT. Due to the negative public opinion, doctors may be hesitant to complete the training required to prescribe MAT. Arkansas currently has a limited availability of MAT prescribers. According to the Drug Enforcement Agency's most recent report, Arkansas has fewer than 200 physicians certified to provide buprenorphine treatment for opioid use disorder, and many of these are not even prescribing buprenorphine.
This limited availability was also a hindrance to my son continuing MAT. While he was participating in the MAT program, he moved away to a rural area of Arkansas that didn't have a MAT program. I believe the combination of the lack of availability and the stigma he was facing both contributed to my son stopping the treatment that was helping him.
MAT is a viable treatment option for opioid use disorder that should be considered. Just as the patient with cancer or heart disease listens to all options and makes an educated decision on which treatment to pursue without shame, the person suffering from opiate addiction should be able to make those same decisions without the hindrance of society-induced stigma or lack of availability of MAT providers.
My son ultimately lost his battle with addiction. In August 2018, he died of a fatal opioid overdose. For him, the disease was terminal; yet there was a proven treatment option.
I'll never know what the outcome would have been had he continued the Medication Assisted Treatment program. That's one of those "what ifs" I deny myself from contemplating too much. However, I do feel like it's a good reason to speak up and hopefully spark conversations that might keep someone else from having that same "what if."
Although I was determined to ignore the stigma, I still found myself at times giving in to the fear and kept my mouth shut when I should have spoken up. I wish I would have fought more to explain the science and the effectiveness of MAT while he was here. I can't change that now, but I can change what I do today.
Today, I can speak up.
It's time for all of us to speak up about the stigma of addiction and Medication Assisted Treatment. It's time for us to educate ourselves to the treatment options that could mean life to someone suffering from opioid addiction. Our voices and our advocacy could save a life.
Today, I say, break that unspoken rule. Speak up, because shame kills! Do what you can do to stop the stigma of addiction and Medication Assisted Treatment.
Paula Cunningham, RN, is the manager of medical policy administration at Arkansas Blue Cross and Blue Shield and a board member of Speakup About Drugs.
Editorial on 04/07/2019