In layperson’s terms, a Grand Challenge is a big, hairy problem that nobody can solve because it has so many interconnected moving parts. It’s like smoothing out wrinkles on a sheet where you smooth one wrinkle, and it just moves to another area. The same principle applies to achieving change among different parts of society. So, I bring together pivotal players from various segments, organizations, backgrounds, and specialties to develop and coordinate their actions toward a common goal.
Grand Challenge to Eliminate Stigma Around Mental Health and Substance Use Disorders
We know that stigma kills. Stigma prevents people from getting treatment, and sometimes that can lead to loss of life. More often, it leads to needless suffering. My experience in this Grand Challenge exposed me to antiquated laws and policies that perpetuate stigma. For example, if you’re living in subsidized housing and have a substance use relapse, you can be kicked out of your housing. Statistics show that 40-60% of people with an addiction problem will relapse at some point1, and veterans have an even higher propensity for relapse due to mental health issues like post-traumatic stress disorder (PTSD)2. So, in these cases, if you relapse — all of a sudden, you’re homeless, and if you have a substance use disorder – it just makes things worse. People have relapses all the time, including with alcohol and nicotine, which does not affect their ability to pay rent. So, why should they be penalized for it? These laws don’t recognize substance use disorders, but they manage to embed stigma deeper into vulnerable parts of society. There are many examples of how stigma appears socially, in how people behave together and think together. People with mental illness are treated differently in the workplace, community centers, places of worship, healthcare, and the criminal justice system, to name a few.
I was watching a TV show with my family the other night, and a character who was having some real challenges on the show was being introduced. Here’s what I heard from the dialogue, “We’ve looked into everything, they could have a real physical problem, or it could just be psychological.” Well, ‘psychological’ is real, and we know that whether you have schizophrenia or mild depression — it’s a real phenomenon with real consequences. When you get into severe mental illness, you’re talking about brain disease. It’s a fact, not a theory. I wish television and movie writers would be more considerate of how they perpetuate stigma with their writing.
One of the goals of this initiative is to establish parity so that when someone feels like they’re having a problem, they go ahead and get help, just like you would if you hurt your body. You wouldn’t sit at home alone and not tell anyone. If you broke your arm, you’d go to the ER. Because of the stigma, many people stay at home and don’t tell anyone if they’re feeling seriously depressed or having uncontrollable thoughts. According to the Mental Illness Policy Organization, about 50% of people with mental illness are untreated.3
It even comes down to how we think about it ourselves. I might be embarrassed by being depressed or anxious. I have battled my own stigma. My mother developed schizophrenia when I was a little kid. For most of my adult life I was embarrassed by this. I am being treated for anxiety myself, but until recently, I never would have told anyone outside my close family. Do I feel that I am less than others because I’m experiencing these feelings, that something is wrong with me, that I have a character flaw? Now I know better, but I don’t know if that would be so if I hadn’t been exposed to this initiative. We have to address how people think about mental illness and ensure that we’re looking at the issue three-dimensionally (laws, social behavior, and inside our own minds) and that we’re tackling this issue on a national scale. This initiative will likely take 10 to 20 years to realize fully, but it will create a society we can be proud of. I imagine an America free of the stigma, with the knowledge, attitudes, and behaviors that support everyone with mental health and substance use disorders.
The backbone organization, the Huntsman Mental Health Institute just formed a multi-year partnership with the Ad Council. They are a nonprofit that uses the power of communication to address the most urgent issues in America. They’re known for “Rosie the Riveter,” “Smokey the Bear,” and “Friends don’t let friends drive drunk,” among other campaigns. While our agreement is a 7-year commitment, we’ll likely be working on it even longer than that. I expect to see this campaign launch in 2023, although they have several notable campaigns already underway in this space, including Seize the Awkward, that helps teenagers start conversations with their peers. We’re also building a partner network of thousands of organizations. Other notable partners include The Carter Center, The American Psychological Association, the American Psychiatric Association, Shatterproof, SAMHSA, the National Institute on Drug Abuse, and the Jed Foundation. We have over a hundred partners right now — we’re just scratching the surface.
Why substance “use” and not substance “abuse?”
Historically, both “use” and “abuse” terms were used to create inclusion. But the word abuse implies a perpetrator and victim. We’ve learned that using substances in a destructive way is not necessarily something that someone has control over. We now view alcoholism as a disease, not a genetic or behavioral component. Some people can’t stop drinking when they start, and the same applies to cocaine or heroin use. Opioid use carries a tremendous amount of stigma. Medications like buprenorphine, methadone, and naltrexone work so well in treating people with opioid addictions that some detractors are against their use because they claim it is just another thing these people can be addicted to. The stigma has become a barrier to treating the people who need it most.
More than ten years ago, the American Society of Addiction Medicine and the AMA revised the definition of addiction to reflect a chronic brain disorder rather than a behavioral problem or making wrong choices.4
Our Grand Challenge points out that people have disorders because they have a brain disease, not because they’re weak.
Nationally, we want to provide impartial implementation to all communities, including those historically marginalized; the poor, African-Americans, Hispanics, LGTBQ, and socially isolated white conservative men living in rural areas. Year after year, 70% of deaths by suicide in the U.S. were committed by white males, and 90% of suicide deaths overall had a diagnosable mental illness at the time.5 We want to ensure that necessary care reaches all people, especially the marginalized and vulnerable.
The Grand Challenge to Eliminate Stigma Around Mental Health and Substance Use Disorders has only been around for about three years. Momentum kicked up when we started reaching out and created a leadership team with top decision-makers of some of the largest professional societies in the mental health space. On our team is Daniel H. Gillison, Jr., CEO of the National Alliance on Mental Illness. NAMI can honestly boast about having the most significant penetration of local volunteer oriented communities across the United States. Also among our leaders are John MacPhee, CEO of The Jed Foundation; Arthur Evans, CEO of the American Psychological Association; Saul Levin, CEO of the American Psychiatric Association, Gary Mendell, CEO of Shatterproof; Janet Lindow, CEO of the Rural Behavioral Institute, and many more! We have had great success in getting organizations to participate in our conferences. Earlier in January, we had participants from 14 organizations representing 1,000s of people attend our strategic planning.
We ran into a challenge at our recent summit with being seen as lacking diversity. Some who came to our Summit thought that all our leaders were white and were hoping for something different; for them, this was more of the same. Unrepresented. But the truth is that we do have diverse people in our leadership. They just were not on display at that event and we could have done a better job of promoting them. That’s on us. Nonetheless, we take the spirit of their concern to heart, and a team of people from different backgrounds put together a set of recommendations so we can address this issue. The country is going through a reckoning with diversity — not just racial but all kinds of diversity, gender, cultural, religious, age, disability, and more. There are so many different parts of society that it’s a real challenge for us to figure out how to operate within this fragmentation of America. But, it’s who we are today, and we will figure out how to equitably implement our initiative, including developing our leadership community with people from as many different communities as possible.
How will this Grand Challenge affect the mentally ill and maybe the world?
I was recently talking with a friend who shared that her son had suicidal tendencies and severe depression and needed to be hospitalized. She had a neighbor whose son had cancer, and the community rallied around her neighbor and brought meals to the house, but no one wanted to talk to my friend or her son. That’s precisely the kind of stigma that we want to eliminate. That’s why I imagine a world where it’s okay to share when there’s a severe mental illness involved and where people rally around it and are not afraid of it. I imagine a world where people can seek the treatment that they need. I imagine a world where people are not only comfortable requesting treatment for their family members but where they get the support they need and deserve.
Yesterday, I was talking to someone in law enforcement, and he told me what it’s like, “to show up when we get a call if we’re going to be talking to a schizophrenic or where we’re going to be talking to someone who’s bipolar. The police get scared.” We all know the horror stories about what police have done wrong in the past, but the other side of the coin is that your average law enforcement professional wants to do the right thing.
Police get scared because they don’t know what they’re walking into, they are not trained for it, and they probably don’t know how to deal with somebody with schizophrenia. There should be universal training for law enforcement and other first responders. In a world free of stigma, people in various careers would be trained appropriately and respond accordingly. People of all capacities would be equipped to deal with this daily, like the doctor treating that broken arm. We see GenX folks in job interviews and the younger generations who are not afraid to talk about their mental condition, stress, and anxieties. They don’t have nearly as much stigma as Baby Boomers. They’ll pipe right up and ask, “What are your mental health benefits?” If they don’t like what they hear, they’ll walk. Unfortunately, mental health benefits often cover significantly less than traditional physical health benefits. Many young people are in therapy, and their health insurance won’t cover it. Either they pay out of pocket, or they stop going. That’s something else that should change.
What motivates you about this specific Grand Challenge?
My life experience. I grew up with a mother who had schizophrenia and a sister who has bipolar disorder. I lived through the difficulties inherent in getting good treatment. This Grand Challenge is focused on eliminating stigma. The beauty is that it puts us in touch with many leaders currently addressing mental illness issues, like homelessness, PTSD, addiction, rehabilitation, and care facilities. It’s all interconnected. Our society seems to love putting stigmas on everything. It’s our goal to bring people together. Stigma knows no boundaries. Stigma impacts us all regardless of political affiliation, wealth, or status. This is an opportunity to work together and see each other as human beings.
A few of the Organizations Involved with The Grand Challenge to Eliminate Stigma Around Mental Health and Substance Use Disorders:
Ad Council, American Psychiatric Association, America Psychological Association, Carter Center, Human Rights Campaign, Huntsman Mental Health Foundation, Huntsman Mental Health Institute, Jed Foundation, National Alliance on Mental Illness, National Institute on Drug Abuse, One Mind, Shatterproof, Silence the Shame, Substance Abuse, and Mental Health Services Administration, and the University of Arizona College of Medicine.
- Understanding and Avoiding a Relapse into Addiction | Hazelden Betty Ford Foundation | Published Apr 20, 2021
- The 5 Stages of Relapse for Veterans | Heroes Smile | ©2022
- The State Of Mental Health In America | Mental Health America | ©2023
- David E. Smith, MD | The Evolution of Addiction Medicine as a Medical Specialty | AMA Journal of Ethics® – Illuminating the Art of Medicine | Published December, 2011