Advocacy Becomes Deadly When We Accept Anything and Demand Nothing

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Advocacy Becomes Deadly When We Accept Anything and Demand Nothing

By Chelsea Laliberte 05/19/16

As advocates, if we make it seem to the public like we have all the answers, we are fooling ourselves and those who truly need us.

Advocacy Becomes Deadly When We Accept Anything and Demand Nothing
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The rise of the addiction and overdose awareness movement has been spearheaded by impacted people, like me. When I lost my younger brother, Alex, to an overdose in 2008 my family and I started Live4Lali, a nonprofit based in Illinois focusing on substance use and harm reduction education, support and advocacy. I’m proud to be a part of a movement that has created an incredible social shift, providing a powerful platform for people who were once silenced and shamed for their drug use or a loved ones. 

Advocates have become local celebrities and the go-to resource over researchers, physicians and public health experts. After all, we speak the language of the people. Social media has given us an outlet for information sharing, storytelling, access and support. For nonprofit organizations like Live4Lali, researching, philosophizing, overanalyzing and sharing was our initial objective. Now into our seventh year, we know there is not a perfect science to it. When given a platform, I believe it is our responsibility as advocates to ensure information is promoted wisely and safely. Words can be weapons, especially if they are driven only by ideology and not by science. 

We don’t have all of the answers. Neither do the National Institutes of Health, American Society of Addiction Medicine or National Institute on Drug Abuse. They admit that most mental illnesses are treatable but not yet curable, and not one perfect treatment works for everyone. So if you get the impression that your local advocate is sounding like they have all of the answers, they probably don’t. Never be afraid to ask for the source of the information they are promoting. 

Being an advocate is about giving a voice to the voiceless and empowering people towards positive change. As advocates, if we make it seem to the public like we have all the answers, we are fooling ourselves and those who truly need us. My message: if we aren't too careful with our education and support tactics we can put people's lives at risk.

At the core of the overdose epidemic killing 129 people per day is the reality that we need to fix what has been broken. The failing systems of criminal justice, health care, government, economics, immigration and security upholding this public health crisis have been woven into the fabric of who we are. We know change is necessary. There’s too much to lose without it. And yet, even through the development of the movement to remove stigma from mental illness and substance use, our inability to identify a magic bullet or grasp relief from the destruction has created a dangerous phenomenon born out of our desperation. I call it, “the anything goes” plan.  

Let me give you a real example of how this plan can be wasteful and dangerous. It’s clear that there is a major shortage of affordable, quality substance use disorder treatment. Some would say that those who want help should “take what they can get.” A few years ago, I would have said that if Alex were still alive today. I would crawl on my hands and knees through the Sahara desert if it meant he could have been treated for his dependency. I can’t help Alex anymore, and I know now that this philosophy would have most likely not worked. 

I see the aftermath of this plan in our walk-in clinic everyday among the people who have been through rounds of inpatient abstinence-based treatment only to be told, “there’s no better treatment” and methadone or buprenorphine is “cheating.” In the middle of an overdose epidemic, some people might be of the mindset that any type of support, treatment, education or recovery program will suffice. I disagree. 

The typical help-seeking opioid dependent individual– we’ll call her Jenny - will most likely be uneducated on her options for treatment. This might be because the people accessing her care are ideologically against certain types of treatment, are in cahoots with centers willing to provide them funding for the referral, or are followers of the “anything goes” model. It happens everyday. 

Jenny might head into an abstinence- and/or faith-based facility, which as a standalone philosophy is not shown in medical literature to be effective for opioid use disorder. Sadly, this is what 90% of treatment centers in America offer. This facility will not provide extensive dual-diagnosis services, and if it does, depression and anxiety disorders are the most it can handle. Most likely, the program will not have a physician’s oversight and instead of providing individualized programming, it will group people together who are experiencing similar issues.  

The centers will not talk to Jenny about harm reduction - reducing negative consequences associated with drug use - so there will be no discussion about ensuring her friends and family have naloxone, the opioid overdose antidote, among other strategies. They probably won’t tell Jenny that if she uses that she shouldn’t use alone, nor offer her medication-assisted treatment to reduce cravings. The centers will not provide extensive family education and support. Jenny will probably go in for 30-45 days then head back home to an environment that was/is supportive of Jenny’s needs (then and now), where there is a great probability she will overdose and die. 

If that’s not bad enough, once Jenny has completed said treatment and uses again when she returns home, those people who encouraged her to seek help or the people who provided the navigation will tell her she was not strong enough or appreciative enough, that she didn’t try hard enough or pray hard enough. She will be given up on for the next person in line. She will be blamed and the cycle of shame and guilt will start all over again. This is a scenario that happens every single day in America. Let me be clear: I am not knocking inpatient facilities, I am critical of the outdated concepts that are deemed appropriate for everyone. 

The majority of advocates are good, kind people who want to help others, create change and end stigma. We know mental illness or substance use disorder is not a matter of willpower. So, why are advocates still promoting this outdated concept? At what cost are we advocating for anything and everything, when we know it’s not working? Why are we not demanding more from health care and from our government? 

I didn’t set out to save a couple of lives. I set out to help end this war entirely so that my children will have reliable resources, support and positive ideas for how to cope with their daily lives and the struggles they might face. It’s worth caring about because it’s life or death, and every life matters. 

Chelsea Laliberte is the Executive Director of nonprofit advocacy organization, Live4Lali, which focuses on substance use and harm reduction education, legislation and support. She is the cofounder of the Lake County Opioid Initiative and a Masters of Science in Social Administration student at Case Western Reserve University, focusing on Mental Health Counseling. 

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