Commentary: Getting Past the Stigma and Treating Addiction as a Chronic Disease

I recently received a call from a very senior level executive at a prestigious medical school, asking for advice on how to help his 26-year-old son who has a serious heroin addiction. The son had been through five residential treatment programs over the past several years, at a cost to the family of over $150,000. The troubling thing about this call was the reason this man reached out to me. He called me because I have been public about my own son’s drug overdose – he was calling me as another affected father and had no idea that I had any familiarity with the field other than my family experience. Let’s just stop there. Consider if this high-level executive’s son had been suffering from a rare tropical disease, he would have unhesitatingly sought and received guidance from a leading medical expert – not a father who had lost his child to that disease. In this case, he was literally too ashamed to contact one of his own organization’s physicians. This extraordinary degree of stigma and sense of isolation that families still experience is unjustified and incapacitating.

So how can we get past the stigma and ensure that our children, our loved ones and everyone affected by addiction receives the appropriate care? Like other chronic medical illnesses, substance use disorders have biological, social and behavioral components; and effective management of the disease requires attention to each of these pieces (similar to Type-II Diabetes). According to the Food and Drug Administration’s standards for effectiveness, there are presently four prevention interventions, five medications and more than a dozen behavioral therapies that can be called effective in preventing, intervening early and managing substance use disorders.

We know the best outcomes are achieved when the disease is identified and intervened upon early in its trajectory. But even serious, chronic cases can be treated effectively. Self-managed, continuing recovery can, and should, be the expectable outcome from all addiction treatments.

Yet many physicians and counselors have never even heard of these medications or of many other “evidence-based” behavioral interventions and most were never trained in how to manage substance use disorders. Many specialty addiction treatment programs are not staffed to provide anything other than basic group counseling. Other programs are not licensed or funded to provide these more effective but more costly therapies and medications. And still, other programs refuse to provide them on ideological grounds. For example, there are currently three FDA-approved medications for the treatment of opioid addiction, yet less than 30 percent of addiction treatment programs offer addiction medications, and less than half of the eligible patients in those programs ever receive them.

Based on a recent review of the issue by the American Society of Addiction Medicine, the Treatment Research Institute and the Avisa Group, it appears that the most significant reasons for the lack of physician utilization are lack of training, legal and regulatory controls on the medications and, most significantly, written and unwritten insurance coverage limitations.

It is time and it is possible for individuals with emerging substance use disorders to have all available medical facts associated with the progression of addictive disease; to receive full disclosure and information about all evidence-based treatment options for their condition; and to have full access to all evidence-based therapies, medications and services.

I am hopeful that the Affordable Care Act and the Parity Legislation together will create basic fairness for individuals and families affected by the disease of addiction. But those landmark pieces of legislation are not enough to eradicate the crippling stigma still associated with this disease. We must stand together—as parents, as patients, as practitioners—to demand the already available health benefits for the prevention and treatment of substance use.

A. Thomas McLellan, Ph.D. is the CEO of the Treatment Research Institute (TRI) with more than 35 years of experience in addiction treatment research. From 2009 to 2010, he served as Science Advisor and Deputy Director of the White House Office of National Drug Control Policy (ONDCP). In 1992, he co-founded and led TRI (until his ONDCP appointment) to transform the way research is employed in the treatment of and policy making around substance use and abuse. Dr. McLellan received his B.A. from Colgate University and his M.S. and Ph.D. from Bryn Mawr College. He obtained postgraduate training in psychology at Oxford University in England. 

12 Responses to Commentary: Getting Past the Stigma and Treating Addiction as a Chronic Disease

  1. Judy Walters | July 19, 2013 at 1:02 pm

    Dr. McLellan, Thank you so much for writing this article. I have made it my life’s mission to remove the stigma and stereotype connected to the words addict, addiction and recovery. I am a recovery co-dependent with an alcoholic husband of 28 years and two of four children that struggle with substance abuses. Five years ago, I joined a faith-based, long-term recovery ministry as their project manager/marketing and P.R. Manager and I facilitate classes for women in the program. I also have a Celebrate Recovery group at my church. The guilt and shame that lead to denial is crippling. If there was no guilt and shame, there would be no need to be in denial. Here’s what I’ve come to know: I absolutely adore addicts in recovery. They are the most brave, courageous and real people I know. Their transparency is their strength and I believe that as God pulls His army together for the end days, they will come from the banks of recovery.

    Thank you for letting me share. God Bless you. I pray your article really impacts this issue.

    Judy Walters
    jwalters@faithfarm.org
    (561) 737-2259

  2. Michael Abbott | July 19, 2013 at 1:29 pm

    The criminal justice is probably the most significant single example of stigmatizing thinking and actions regarding addiction. In my community, the district courts and state law set the tone for the attitudes and treatment of addiction. Treatment providers don’t want to take that on because it would be bad for business.

    • Terrance Reeves, MD | July 29, 2013 at 9:54 pm

      Thank you for your insight and career Dr. Mclellan. Some of the comments about your article reflect the enormity of the misinformation in our society. Not take on the criminal justice system because it would be bad for business? C’mon. (Michael Abbot comment). Law and the courts are, broadly speaking, a reflection of societal views, they do not make them.
      If twenty guys in a frat party a bit too much many weekends are they bad guys? Fast forward 20 years and two of those guys are addicted to alcohol. Are these the “worst” two of the bunch or did they have a biological milieu conducive to alcoholism? Society says the former. Modern medicine says the latter. Knowledge is the most reliable answer for false perceptions. Educators have a gigantic job to do!

    • Kathleen arch | August 12, 2013 at 1:17 am

      You managed to single handily hit the nail on the head. Our justice system has created a stigma that cripples our efforts to end the War on Drugs and End The Stigmas associated with addiction.

      Addiction is a disease, and the medical community, while they have declared addiction, a disease they too fail to embrace our need to help our children.

      The justice system (and I take offense to the word justice… As it is far from justice when addiction is part of the same sentence) loves to label this epidemic as a War on Drugs yet they spend more in prosecution and incarceration then on they do on funding a solution.

  3. Joe Miller | July 21, 2013 at 12:07 am

    Realistically speaking, as long as we insist upon the criminalization of the users of these substances the disease model of addiction will never be taken seriously. Addicts and their families will continue to be stigmatized as criminals rather than folks suffering from the consequences of a medial condition.

  4. Doug | July 22, 2013 at 1:22 pm

    I am sorry for Dr. McLellan’s loss. I think our field will be taken more seriously when we can agree on terms. Not everyone likes the APA term “substance use disorder” (SUD) but like “diabetes” it allows for the possibility that not everyone with the same diagnosis has exactly the same needs or treatment. I suggest we avoid terms like “addict”, “alcoholic” and “addiction” because they are a small subset of SUDs and conjure visions of dirty needles in parks and alleyways, street crime and DTs. Given those stereotypes and their basis in fact I would argue that much of the stigma is self-inflicted. What other “disease” “makes” patients steal their doctors’ prescription pads?

  5. Carlos | July 23, 2013 at 5:07 pm

    For one thing professional staff members have to continuo to insist that there is such thing as a Alcoholic or Addicted personality that do not exist Stimatize discriminate and stereotype us all.

    Blog The Worst Treatment I Ever Had

  6. Mark Schenker, Ph.D. | July 24, 2013 at 11:27 am

    Dr. McLellan does a fine job of noting the problems in our service delivery system and the stigma of addiction in our society. I believe there is one additional reason for the lack of dissemination of new treatment options, and that is the prevailing ideology of most current treatment programs. As a clinician with 30 years of experience in this field, I am a firm proponent of 12 Step programs for most patients struggling with recovery for addiction, and I hail the role of these programs in stimulating research and knowledge in this area. However, there is often a sense in this arena that there is no other alternative route to recovery, that any medication use is relapse, and that such other techniques are illegitimate shortcuts to recovery. I think that we need to re-think our concepts of recovery, and what routes may be valuable in reaching this goal. Bill Wilson himself was quoted as saying that “AA has no monopoly on recovery” and he personally continued to explore other modalities. It is important that we remain open minded about our approach to helping those who still suffer from addiction.

  7. Rob Fleming | July 28, 2013 at 11:15 am

    Some wise engineers taught me many years ago that “problems are just misunderstood opportunities” (their research led to cell phones). Maybe we need to make stigma work for us.
    One of the reasons we don’t invest in early intervention; broad-based, appropriate treatment; and continuing recovery support is lack of public understanding and commitment.
    We tried the moral model (“bad addict, bad!”). We tried the medical model (“it’s a disease”). Many people can shrug these off because they think they are not affected personally. It’s time to try an economic model (“pay me now and pay me later”) that shows that all those behaviors that produce stigma also produce large, shared costs (externalities). Preventing those costs through prevention, early intervention, and effective treatment may have immediate costs, but they save far more in the long run.
    People are more sensitive to economic arguments (i.e. more selfish) in economic hard times. They are more reinforced in their opinions when they are in communities that share them, not separated by stigma (e.g. the Tea Party). We did not get significant research on AIDS and de-stigmatization of homosexuality until the families and friends of gays became a political force.
    Maybe what we need is an alliance of outrage composed of the people whose loved ones have been marginalized, let down, and discarded allied with the people outraged at the higher taxes and health care costs imposed by not dealing effectively with SUD. These folks vote and make campaign contributions. It’s time to redirect the stigma from the people with the disease and put it on the people and institutions who promote it. Let’s picket the stores that sell “bath salts”. Let’s pack the hearing rooms when SUD service budgets and alcohol taxes are considered. It’s time for “Al Anon with teeth”.

    • Teresa FNP-BC | December 13, 2013 at 6:09 pm

      Wow! I have never heard this issue so well articulated. I am a nurse practitioner and have been assisting with the treatment of patients for addiction in a primary care clinic for over 4 years. We use Suboxone and have 200 people in treatment and a waiting list longer than that. I know that a lot of my fellow nurse practitioners and even the physician’s in the community feel that I am wasting my education taking care of “addicts” because they have told me so. They ask me if I’m afraid of my patients. I tell them I do not have a single patient on my panel that I feel would break into my car or home but I’m worried about the ones not in treatment that we know are out there but don’t know who they are. I wish I could somehow make these professionals understand that we are losing an entire generation to this crisis. I have seen the children of hospital administrators, nurses, educators, and many other “up-standing” members of the community as patients and none of them ever thought this would happen to them…but it did. I love my patients and I am pulling for each and everyone of them but most won’t make it and some will die between treatment programs. I wish we could get the decision makers to recognize this as a chronic disease and lift the restrictions on treatment. Nurse practitioners do not write suboxone but in my state they can write Lortab. Physicians are only able to see a maximum of 100 patients for treatment with Suboxone with strict guidelines to follow. Most physicians don’t feel it is worth the trouble. Nurse practitioners should be allowed to write suboxone and take care for these patient on their own. Nurses have always stepped up and taken care of those patients that were to much trouble for others. I recognize the importance of treatment and will continue to take care of these patients as long the two physicians I work with will let me.

  8. Thomas McLellan | August 2, 2013 at 4:08 pm

    Thank you all for continuing this conversation. I appreciate your various perspectives. I hope these discussions will ultimately lead to public demand for improved availability and quality of care. Recognizing the need to change the way in which addiction is perceived and managed has never been more important than it is today.

  9. Shawn's Mom | September 26, 2013 at 8:41 am

    It will be one year on Sept. 30 that I lost my beautiful 22 year old son, Shawn Sperling, to a heroin overdose. What started as an OxyContin prescription quickly became an addiction to it and then a heroin addiction because heroin is so easy to get and so cheap. Shawn was arrested for forging a doctor’s prescription for oxycontin, yet the court kept slapping him on the wrist, even though I begged the judge to court order a residential treatment program for him. The case kept getting postponed and in the meantime Shawn turned to heroin. It was a fight to get insurance to pay for a residential rehab for him and when they finally did, we had to wait fir a bed to be available. All this passing time is deadly to an addict. Shawn went into a residential treatment center and he was doing so well. Then after 45 days insurance said that that wouldn’t pay for it anymore so he was out the door. Three days later my son, Nicky found him unresponsive on the kitchen floor. It was the day before Nicky’s 24th birthday. It is almost a year since the last time we heard the laugh that won him the title of “best laugh” in the yearbook. Shawn was a loveable, popular, witty kid. We called him “Ferris Buehler” because like the character in the movie he was loved by all. Something needs to be done to change the stigma attached to addiction. It is a terrible disease and needs to be treated like a terrible disease. Insurance companies need to pay for residential, longterm treatment. Shawn wasnt ready to be released after 45 days and its disgusting that an insurance company decided that it was enough time. Insurance companies need to work with rehab facilities to ensure that beds are immediately available and that the care will be longterm. Outpatient state funded programs are a joke. Shawn’s friend got introduced to heroin waiting outside for a ride home from a state funded facility. They sell drugs openly at these places and nobody cares because they’re getting government funded and the people who are “treated” there only go because they are forced to or they lose their welfare benefits. It’s ridiculous. And when these dealers get arrested they are out within hours, ordered to attend these outpatient programs where everyone looks the other way because they’re getting state funded. Meanwhile our kids are dying. This is an epidemic and until its taken seriously by insurance companies and the courts innocent lives like my beautiful Shawn’s are lost.

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