In 2011, Gary Mendell’s 25 yr old son, Brian, died by suicide after struggling with addiction for a decade. As Gary was supporting Brian through his recovery, remission, and relapses, he realized that, unlike other diseases, there was no real place to go for help. No huge foundation funding research. No 5k’s. So in the wake of Brian’s death, Gary created it himself. This week, Nzinga talks to Gary about the formation of Shatterproof, ATLAS (a treatment locator, assessment, and standards platform), and the immense importance of providing evidence-based education, resources, and treatment options.
Please note, In Recovery contains mature themes and may not be appropriate for all listeners.
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[00:28] Dr. Nzinga Harrison: Hello, everybody. Thank you for listening to In Recovery with Dr. Nzinga Harrison. So most of the time this is a question and answer show, but we are also all about breaking down stigma, providing education, linking you all to resources that might be helpful. And so you’ll notice that every now and then you’ll hear a show where we have someone on where it’s not necessarily a question and answer, but we’re talking about a resource they have to offer, or a program that they’re running, or a piece of information that we feel like would be helpful to have. And so you’ll see us mixing up the shows that way.
[01:02] Claire Jones: Yeah. And that being said, that doesn’t mean they should stop asking questions because we obviously want to hear from you. So if you do have questions, keep calling. Keep filling out that form.
[01:26] Dr. Nzinga Harrison: This is National Mental Health Awareness Month, and so we’re actually going to do a series of episodes on the crossover between mental health and addiction. And so let me just start with my soapbox that that’s not a crossover. Addiction is mental health. This idea that we’ve separated them is the same thing as like this us and them idea is fake. But we’re going to talk about some things traditionally thought of as mental health other than addiction. I am a little bit star struck to be talking to someone that I know really well through our work with Eleanor Health and his amazing nonprofit, which is called Shatterproof, which was built to try to reverse the stigma in this country around addiction and make the world of treatment and recovery easier for people to navigate. So while I know all about this person, this is my first time meeting him over Zoom. It’s none other than Gary Mendell who founded Shatterproof. So, Gary, thank you so much for coming on In Recovering.
[02:35] Gary Mendell: Thank you so much for having me, really.
[02:38] Dr. Nzinga Harrison: How about you just get into telling us how Shatterproof got started, the mission and the work of it? Would love to hear about your personal story as well.
[02:45] Gary Mendell: Well, unlike most in this field, my career was in business. Not in healthcare or nonprofits. And my older son, Brian, was struggling with addiction. And he struggled for eight years and tragically, tragically, we lost him in October of 2011. You know, like any parent that had gone through this, you struggle to make sense of what happened. And as I did so. Because I own my own business, I was able to take some time off and really throw myself into trying to figure out what had happened. And how I could have let this happen as a father. And what could be done to help others. And after three months of doing so, a few things became very apparent to me that struck me hard. One was how many people in this country are struggling with the addiction to drugs or alcohol. It’s 25 million people. Third largest cause of death in this country behind heart and cancer. The second thing that struck me was that my vision of addiction while my son was alive was wrong. I dealt with addiction when my son was late-teens and 20s. But then I read research after he passed away and learned that literally eight out of 10 of those addicted today became addicted before their 18th birthday.
[04:24] Gary Mendell: Which really struck me hard. But what struck me the hardest is when I learned that our federal government had given out grants of tens of billions of dollars to researchers all across the country in the decades prior to my son dying. And those researchers had successfully used that money, and successfully created a body of knowledge, which if used, had proven to reduce the number of our kids who ever used drugs and ever become addicted by 20 to 40 percent, depending on the study you looked at. Yet all this information was sitting in peer-reviewed medical journals. And shockingly, tragically, was not in use in our communities and our healthcare system. As a father, it just destroyed me learning that this information, if it was simply just used, we could have prevented my son’s life and hundreds of thousands just like him. Not to mention what it could do for those who haven’t passed away to improve their quality of life. And what became very clear of why this wasn’t being used is there was not in this country one well-funded national organization to ensure that research that was proven to work was being implemented, to make sure this was out in use in our society.
[05:57] Gary Mendell: And the reason behind that is, you know, for decades, who would create a nonprofit for a situation where many people didn’t view it as a disease, they viewed it as bad people with bad character doing bad things. But I could see sitting at my desk eight years ago that the Affordable Care Act was going to provide some momentum, some slight tipping point to be able to create a nonprofit like American Heart Association, American Cancer Society, Susan Komen, Autism Speaks, all the rest for this disease. And that organization then would have the ability, assuming it was well-funded and it can bring people together, to create the change that was needed to protect other families. And that was what led to the founding of Shatterproof seven years ago.
[06:56] Gary Mendell: Today, we’re focused on three pillars of work. One is transforming the treatment system in the United States. Two, taking information and put it in user-friendly format for families and communities to help guide them through either prevention or treatment or recovery. And then number three, our third pillar, which we’re just beginning, is to really target and end the largest cause of death in this country related to this epidemic, and that is the stigma that’s associated with it. The stigma against good treatment, the stigma against medications, the stigma against those with this disease on and on.
[07:44] Dr. Nzinga Harrison: So talk to me about, number one, transforming the treatment system. So as you’ve taken a bird’s-eye look into the treatment system, what’s wrong with it and what does transformation look like?
[07:56] Gary Mendell: Sure. What’s wrong is a short answer we all know which is, in most cases, everything. So let me move to our plan to transform it. It’s a five-point plan. The first thing is we need one national standard of care for the treatment of addiction. Number two, once we have one national standard of care, a way to measure which treatment programs in the country are following the standard of care and which ones aren’t. Number three, quality of care is only one piece of it, but the other piece of it is if you have a family member or yourself who is addicted or a close friend, not only did they need to go to a treatment program that’s offering quality care versus ones that aren’t, but also the right type of care. Do you need to go to residential or do you need to go to outpatient? And if you’re in the wrong one, which is most appropriate for you based on your diagnosis, it could be the best treatment program in the country, it’s not going to help you as much. Number four, most people in the treatment industry are good people who want to help people, but they need better resources to be able to do so. And that comes to payment reform. And when I say payment reform, it’s not just about increasing rates. It’s also about having models of payment that facilitate quality care and incentivize quality care. Making sure that the right things are reimbursed at the right levels, and protocols that don’t have evidence research behind showing their work are not being reimbursed.
[09:45] Gary Mendell: And number five, move this into professional education: medical schools, nursing schools, psychiatric schools, etc., where every doctor that graduates medical school, or every student that graduates medical school to become a doctor ,has basic education in the prevention and treatment of symptoms within your body, whether it’s asthma, diabetes, heart disease. Not specialty care, but basics, but not so for addiction. And so this needs to be brought into professional education. So that’s the five-point plan. On the first one, it’s done, and that’s how we met.
[15:12] Claire Jones: Can you two tell me a little bit of how you came to find each other?
[15:16] Dr. Nzinga Harrison: Yeah, I can start it out. So as we were conceptualizing Eleanor Health — I’ve been practicing addiction medicine since 2006, let’s call it, when I finished psychiatry residency. And so just over that time, I said this system is too disjointed, because I’m working in the system, so I’m on the other side with family and loved ones wanting something different for the people that I’m taking care of. I can’t find a program that will do MAT and residential care because of the overwhelming abstinence-based orientation of the country. I can’t find a program that will actually do individualized treatment plans. And so as I was forming Eleanor Health, I said one, everything we do is going to be evidence-based and data driven. Two, we’re going to treat people the way human beings should be treated. So we are value based, in that we value the people that come to us, but also our reimbursement fee for service — like, when you pay for quantity of service, then you provide quantity of service. We want to be paid by quality of service. We want to go to somebody’s house — if they just had surgery, we want to send them a gift package like we want them to know we care about them. And so I came up with this whole set of literally what once I got introduced to Shatterproof was like their guiding principles. And I was like, where has Shatterproof been my entire career? Because we don’t want Eleanor, Health to be the only ones thinking this way.
[16:51] Claire Jones: So, Gary, can you tell us what those eight guiding principles are?
[16:55] Gary Mendell: Sure. Actually, we came up with eight, but it’s really seven, because one of them is screening, which is to get people into treatment. So let’s just take the other seven, which are once you’re in treatment, what are the things that should be done? So the first thing is you’ve got to have a quality assessment. Not just being assessed for addiction issues, but also being assessed for mental health issues or physical issues. Number two, once you’re assessed and you have a treatment plan, you need to be continually reassessed and your treatment plan altered. Can you imagine a scenario that you go into a hospital for chest pains and they say, here’s your plan for the next 30 days? No. Here’s your plan for the next 24 hours, let’s retest you and alter it. And then let’s test you three days later or a week later and alter it. So a personal plan for each patient that is continually altered on how well that patient is improving or not improving. Number three, very specific to this disease, fast access to treatment. We have to have treatment programs that have the funding available that if someone calls, they either have availability or they can direct you to a provider that has availability.
[18:28] Gary Mendell: Principle four: long-term disease management. What this refers to is moving a patient through different levels of care based on how they are doing at every point in time. For someone addicted, it could mean starting with intensive outpatient care. And if they do well, moving them to regular outpatient care, moving them to less intensive care after that, into recovery support. Or at some point time, if the person relapses, they may need a higher level of care. So the big picture of this is moving through different levels of care, just like someone would with any other disease. Number five, coordinated care for every illness. When my son was alive, going through care, I used to arrange a call every Tuesday night with his therapist, his sober coach and his treatment program. Why should I have to do that? You don’t have to do that for any other disease. It’s all in your medical records and everyone’s talking to each other. Number six: behavioral health care providers that are credentialed needs to be a part of this. Number seven: for a couple forms of addiction, whether it’s those addicted to opioids or those addicted to alcohol, there are medications which absolutely have proven through research to improve outcomes significantly. Yet more than half of the providers in this country do not even offer the medications. And last, its recovery support system.
[20:05] Gary Mendell: The second-to-last treatment program my son went to was the best for him. It was the first time that he ever asked, Dad, can I stay longer? They’re really helping me. And they’re really getting into not just addiction issues, but what mental health issues do I have, my anxiety. They’re helping me with that. But where they fell down was they had an assistant looking through a database to find out where he goes next. Versus really understanding the right support he needed at a step-down level to help him. So it’s getting that right, next set of care on a maintenance level for someone in recovery. It’s recovery supports with the right insurance. Reducing stigma in this country, a huge part of it. But the right support system in place for people to recover, just like someone with any other disease.
[21:03] Dr. Nzinga Harrison: Is there a place where parents and loved ones and support systems can access those seven bullet points that you put, because one of the things that can be so debilitating about addiction and substance use disorders is that this country has made it just exceedingly hard to even know what to look for.
[21:29] Gary Mendell: Even better. We have that information already on treatment programs in six states. And we published it on our website. It’s TreatmentAtlas.org. Any family member can go there today. It’s been up for about a month. And the first thing that a family is asked to do — or someone looking for treatment or someone looking for them — is take this 13-question, less than 10 minute assessment. All in consumer-friendly language, which will put the patient down one of four paths. Either hospitalization, residential, intensive outpatient or outpatient. And then once you hit submit and you’re given a recommendation, it then says find treatment. If you hit that button, and you’re in one of the six states that we have information, it will preload the recommendations. So if your recommendation was intensive outpatient, it will preload intensive outpatient and only show you the treatment program within a certain radius of your zip code that fits that criteria.
[22:38] Gary Mendell: And then the user can also filter by what insurance do you have? What are you addicted to? Opioids or alcohol or some other drug? Are you an adolescent or adult? And you can run through a bunch of filters to narrow down the list of treatment programs that hit those criteria. And actually, one of the filters also is does the treatment program offer medications to treat someone addicted? So once you run through those filters, it shows you each set of treatment programs and then you can compare them and see, go right down the list, all the things they do and all the things that they don’t.
[23:13] Dr. Nzinga Harrison: For the folks not in those six states, how do we make it possible for them to ask these questions when they’re searching treatment?
[23:21] Gary Mendell: Sure. Well, the first thing is everyone in the country, no matter what state you’re in, can take that assessment. So once you take that assessment, it’ll immediately take off the table someone who is most appropriate for outpatient thinking they should go to residential. So that’s everyone in the country taking those 13 questions.
[23:41] Dr. Nzinga Harrison: I cannot emphasize how excruciatingly important that is, because we have this idea in this country that a 28-day inpatient or residential stay is the cure for addiction, when we know that that may be the first step for some people, but this is a long game that has to continue over a lifetime for a chronic medical illness. And I think addiction treatment to this point has really been like — I hate to say it this way because, you know, I don’t like to be pejorative or mean — but literally anybody can start an addiction treatment program right now. And do equestrian therapy and meditation by the ocean. All of which is important, but without the evidence base variables there. And on the other hand, can treat people horribly and punitively for negative drug screens, which also is not evidence-based. And on the other hand, not talk to the family, or discharge you without an after-care plan. All of these are rampant.
[24:44] Gary Mendell: I could not agree with you more. For every hundred people who take this, some who would have gone to residential, because that’s what we all think, some will shift to outpatient, which is more appropriate to them. There may be a few in there who would have thought that outpatient and it tells them residential, but there’s going to be many that would have thought residential and they don’t need residential. Not only do they not need it, they’ll do worse. My son went to eight different residential programs because that’s what I was told. And that’s what we thought. And he may have done well with one. Or maybe he didn’t need any. I don’t know.
[25:26] Claire Jones: I mean, why is it that just anyone can start treatment? And why is it that all of this information that was funded by the government, all of this research was there and nobody was using it?
[25:44] Gary Mendell: Ultimately, most everything comes back to stigma. Why have we traditionally had 14,000 “rehabs” outside of the healthcare system, not regulated, not part of our healthcare system like any other disease? It ultimately comes back to stigma. Like, why should a hospital treat addiction? Why should a doctor treat addiction when it’s a bunch of bad people who aren’t trying hard enough with poor character? This system has been outside of the healthcare system because no one was paying attention to it. Not taught in medical schools. Don’t want those people in my waiting room. I wasn’t taught in medical school, so I can’t bring it into our hospital system, etc. Because 80 percent of Americans in a recent survey, 80 percent, said, I’m not comfortable associating with someone addicted as my friend, my coworker or my neighbor or marrying into my family. So if you’re addicted, you feel it. And you don’t want to let anybody know you’re addicted. And even worse, you start to believe it. And you start to believe you are not worth it. And you are not worthy of getting a good job or living in a neighborhood with your friends. You believe it and you lose hope and you feel you’ve lost your self-esteem. You feel worthless. This is a treatable disease. This is just as treatable with the same success rates as someone with any other chronic illness, such as diabetes, asthma or heart disease. And when the public is educated to the fact that if you get evidence-based treatment, you can live next to somebody who is addicted because it’s no different than someone with diabetes, heart disease or asthma. If they get evidence-based treatment, they will do fine.
[27:55] Claire Jones: How do we, both on a larger organizational level like Shatterproof and a treatment level like Eleanor Health and then on an individual level like me, who until working on this podcast, didn’t know a lot about this world, work to break down stigma?
[28:14] Gary Mendell: We need to get people to TreatmentAtlas.org so they get quality treatment. Because if the country is riddled with people who are not getting quality treatment and they’re constantly relapsing, well, there’s no reason for the stigma to change. It’s about getting tens of thousands, and then eventually hundreds of thousands of organizations doing three simple things: using their channel of distribution to educate people that this is a treatable disease. Number two, changing language. Absolutely changing language. This is not just what feels right. I can show you research. The first group is told the story about Johnny, who’s an addict, and the second group is told a story about Johnny, who is addicted to drugs. In the first group, it’s let’s get him to punishment because he’s an addict. That’s the impression you get. And the second group is no, he’s addicted. Let’s get him to healthcare. And number three: policies have to be aligned. We need the same benefits, healthcare benefits, same health insurance as any other physical disease. We need hiring and firing policies to be the same. We need to diagnose someone with the disease and get them to healthcare, not to the criminal justice system. And I’m going to say this — I could say this a thousand times — just like any other disease.
[33:33] Dr. Nzinga Harrison: OK, so let’s get to our listener questions.
[33:36] Claire Jones: So the first one actually goes back to something that you said about what you would do on Tuesday nights, where you would coordinate all of these different people together to sort of make a streamlined process for Brian’s treatment. And we got a question from a listener who says, how do I tackle what feels like an insurmountable set of addictions and disorders? Where do I start in trying to get help with alcoholism, gambling, severe PTSD, anxiety and grief? I’m being treated by several people, but they don’t work together. The psychiatrist prescribes drugs for anxiety and depression, but she doesn’t want to hear a lot about my life. Grief counseling for my children’s dad’s suicide, therapy somewhere else for PTSD. It’s ended up that almost all of the help isn’t working, even though it feels like I’m getting some. The pieced-together approach makes it more daunting and easier to hide some of my issues.
[34:30] Gary Mendell: You know, I’m not a professional. One quick response is could she play the role that I played, and she organized a call, a conference call for 30 to 45 minutes on a Tuesday night with all the professionals together. Because they need to talk and compare notes. The therapist will know so much more, if she’s understanding what medications you’re taking and why from the psychiatrist who’s prescribing them, etc. So that’s one option. Another option is to ensure that each one is inputting into medical records what their experience with the patient is, and they can all go on a medical record and read each others’ notes. That’s another option as well. \
[35:20] Dr. Nzinga Harrison: I agree with both of those options. And that third option that I always put on the table for people, I don’t like to hear that you have a set of care providers that don’t want to talk to each other. Because a care provider that wants to do a good job, wants to talk to every single other person who’s involved in your care. So I would also put on the table, keep looking. You may be able to find a place that can address all of those for you. There are not a lot of places that have it all in one place, but even if you’re getting it from five different places, each of those five care providers should want to be coordinating with your other care providers. And so if that’s not the case, you may want to keep looking.
[36:06] Gary Mendell: I 100 percent agree with that. And if you’re in one of the six states where Atlas is, that is one of the areas that you can look through the information and find a provider that offers all pieces.
[36:20] Claire Jones: OK. The second question that we have is from someone named Frankie. And they say, “my younger brother has been struggling with benzo and opiate addiction for about five years now and is currently actively using. His apparent motivation to change waxes and wanes. My heart hurts to see him go through so much pain and suffering. For the times that he asks for help, our family has gone through hell and back navigating insurance and treatment centers. One of the main obstacles we have is trying to decipher if the treatment center is any good. The last residential rehab he went to left him out in the cold after 28 days. No recommendation for aftercare other than going to NA meetings, and of course, no help finding after care when asked. He doesn’t have an interest in going back to inpatient, but he is open to outpatient. What are the questions we should be asking the clinics to screen if they care? And what would you consider good or at least good enough?
[37:15] Gary Mendell: The first thing is to go on to TreatmentAtlas.org and have the patient or some other family member who knows the patient well answer those 13 questions and get a recommendation of the type of care, whether it’s hospitalization, residential, intensive outpatient or outpatient. And if you’re in one of the six states, it takes you to the quality information. If you’re not one of the six, it will then take you to FindTreatment.gov. Then we provide a set of questions that you can ask the provider to find the right care. And one of the biggest ones, because you mentioned the patient is addicted to opioids, is finding a treatment that offers the three FDA approved medications. I am 100 percent behind every patient getting treating for this disease like any other disease. And so if I had chest pains tonight, I would sit with the doctor the next day across his desk, and it would be a doctor with credentials, and that doctor would say the following: “The bad news is you have a problem with your heart valve. The good news is there’s ways to treat it. Here’s three medications. Here’s the pluses and minuses of each. You decide. Or you could try to do nothing for a while. Abstinence. That’s OK, too. But here’s what the research shows on the risks and benefits of each of the three. And you decide as a patient.” That is bulls-eye what should happen with this disease.
[38:53] Dr. Nzinga Harrison: If you have opiate use disorder or alcohol use disorder and you’re not thinking about medication assisted treatment with buprenorphine, Suboxone, Naltrexone, methadone, even if you’re not thinking about that, I encourage you to filter for a program that offers that because like Gary said, you want to get these are the options. This is what the evidence says about each of these options. So you can have a full set of information to make your decision. And if you go to a program that doesn’t offer MAT, that last piece of information about the evidence around MAT and how it can affect the chances for getting your illness into remission and keeping your illness in remission will be missing. Any words of wisdom you would like to give? Maybe the number one thing you wish you knew as a parent when you were navigating treatment for the first time?
[39:52] Gary Mendell: I would say that the treatment system in the United States is not near where it needs to be compared to other diseases today. If you have any treatment program tell you you’re asking too many questions, it’s the wrong treatment program. Learn the principles of care. Learn the questions you should ask a treatment program. If you happen to be in one of the six states, we have quality information. It’s all laid out for you. Take the time to read it and understand it. And the last thing that I ever tell any family member that I speak to is when you get off the phone with me, either walk down the hall or get in your car or pick up the phone, and talk to your loved one who’s addicted. And don’t just tell them you love them. They already know that. Tell them how proud you are of them of working through a difficult chronic illness. How proud you are of them. That’s what they should hear.
[40:57] Dr. Nzinga Harrison: Thank you, Gary. Appreciate you.
[41:00] Gary Mendell: Nzinga, thank you for all you’re doing at Eleanor Health, because we know you’re delivering quality care there. So thank you and your entire team for everything you’re doing there. Thank you both for helping me get this message out. Really appreciate it.
[41:21] Dr. Nzinga Harrison: So that was Gary Mendell, CEO and founder of Shatterproof. You can see why I said at the top of the show that I’m a bit star struck. He has taken the most painful experience of losing his child and turned it into something that will save so many lives. And so I could not be thankful enough to Gary for coming on the show. If you want to know more about Shatterproof, you can find it at Shatterproof.org. You can also Google Shatterproof Atlas, which I absolutely love because it is an atlas that will help you navigate what is a broken, fragmented system. So with that, I think we can sign off. Hope to talk to you next week.
[42:15] Dr. Nzinga Harrison: In Recovery is a Lemonada Media original. The show is produced by Claire Jones and edited by Ivan Kuraev. Music is by Dan Molad. Jessica Cordova Kramer and Stephanie Wittels Wachs are our executive producers. Rate and review us and say nice things. And follow us @LemonadaMedia across all social platforms, or find me on Twitter @naharrisonmd. If you’ve learned from us, share the show with your others. Let’s help destigmatize addiction together.