Action, Alliance, and Hope for a Cure. Schizophrenia, A Treatable Brain Disease (Ep. 76)

Guest: Gordon Lavigne, CEO,  Schizophrenia and Psychosis Action Alliance

And Alfonso Guido Jr., JD

The vision of S&PAA (The Schizophrenia and Psychosis Action Alliance is this: 

to see schizophrenia and psychosis spectrum disorders universally recognized and treated as neurobiological brain illnesses.

Its mission?:

to create a movement for systemic change to improve care, support, and equity for the millions of people living with schizophrenia and psychosis spectrum disorders - and to find a cure.

Sounds good to us! 

We ask:

1. When and why was Schizophrenia and Psychosis Action Alliance (S&PAA) formed?

2. Some may recall that the name was originally SARDAA. Why did you rebrand?

3. Why did each of you come to work in mental illness/health advocacy? Are you family members?

4. What are two or three of the most important things S&;PAA does?

5. What kind of research is most needed?

6. How do you work with NAMI? Weren’t they formed for similar reasons as S&PAA?

7. What other mental health organizations do you work with and how?

8. Do you think there are too many groups or that some may someday consolidate?

9. What issues does S&PAA follow and advocate for in Congress?

10. Mimi was at this spring’s Congressional educational event and participated in the Angry Moms

demonstration. Mindy is also a member of the Angry Moms. Will there be more events like this?

11. How can our listeners engage with S&;PAA? Can they join as a member?

12. What one change would each of you most like to see in national mental health policy?

13. What most needs funding?

14. Anything else you would like to add to this conversation?

LINKS:
https://sczaction.org/
https://www.guidelobby.com/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Transcript

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SPEAKER_00 0:00

Most of mental health lobbying is we want what they have. We being the underfinanced public mental health system want what they, our primary care brothers and sisters, have.

SPEAKER_01 0:14

We're angry because we have so many fights that we must pursue in order to give our community the dignity, the respect that they deserve to be well and to be loved.

SPEAKER_03 0:28

Those are the voices of Gordon Levine, CEO of the Schizophrenia and Psychosis Action Alliance, and Al Guida, advocate for mental health public policy. Both in the fight to create a movement for systemic change, to improve care and support and equity for those with schizophrenia and psychosis, and to fight for a cure. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. Welcome to episode 76. Tonight, we're going to have an episode that Mindy and Mimi and I have been talking about doing for a long, long time, talking about schizophrenia as a treatable brain disease. And we've got just the guests to tell us all about it. This is Taking Action with the Schizophrenia and Psychosis Action Alliance. Mindy Gryling is on the board, and we're bringing in in a second Gordon Levine, who is the CEO and Al Guida Jr. Before we bring them on, Mindy, last time we did we did a podcast, your your Jim had had a bit of um a relapse. Is he doing better?

SPEAKER_02 1:51

Thank you for asking. I'm so glad that he is doing better. You know, he I think he just absent-mindedly took too much medication. But then when he wasn't feeling well, he added some more things on to that, and then he had seizures. But luckily, we worked with his doctor, who you know is Dr. Robert Lateman, also on the board of Schizophrenia and Psychosis Action Alliance. And he's all perfect now, as perfect as he's going to get. I met with uh Jim and I meet with Dr. Leitman together, and we did it yesterday afternoon. We had his blood levels, everything is tip top again. And Jim is blowing out his birthday candles just a few minutes ago. His birthday was yesterday. My husband Rogers is tomorrow. So we're so happy that that we're back in gear for the birthdays and for life.

SPEAKER_03 2:42

That's wonderful. And as all our listeners know, it's it's a roller coaster. It's there's many, there's many games, and none of them are fun, but uh, you know, it's good that it what sometimes what goes around comes around, and we consider ourselves lucky when it does. So I'm really glad. Mimi, by the way, is traveling again. She was hoping her plane would take off late so she could join us from the airport, but it was on time. So we have her two moms in the trenches, and we're going to bring on Gordon and Al in a moment. As my listeners know, what we're going through here is um this pre-trial period in minimum security jail for my son, my first time being the mother of an inmate. And uh it's been it's been interesting because he sounds more like himself right now than he has in a long time. And I think it's because he's making friends. I think being with 55 other people, and like he says, Well, I'm doing, I'm doing pretty well considering I'm in jail, but he's also my son is so sweet, and he's like, It's my friend's birthday, and we're gonna make ramen noodles for a surprise birthday party for him. So I I've been in the process of collecting letters, character reference letters about my son, who I I call Ben for publicity purposes. And that has been so heartwarming and also so heartbreaking for me to get all these letters of support from all these people who love him, customers that he used to wait on at the restaurant where he worked, the management of the restaurant, the manager of another place where he worked. And it's so heartwarming to see how many people care. I was able to collect 11 letters and friends of mine. And uh, you know, I just hope it affects it. I hope it gets the public defender and the judge to see a clearer picture of who he is, and that we get him some help instead of a sentence.

SPEAKER_02 4:38

So that's where we are because that's wonderful that people came through for him. And you know, doesn't that say something though about our mental health system? That he's uh making friends and has a community in jail. Maybe if he'd had that on the outside, he wouldn't be there.

SPEAKER_03 5:00

Yes, and maybe if he'd accepted it. Because what's interesting, there's something called choice fatigue when you have too many choices and you just can't make choices. And you know, we'll be talking, actually, Alan Gordon and I were talking about you know, uh people's rights, and we talk about that a lot. But sometimes I feel like my son does better when he doesn't have that many choices. And right now, where he is, he he's told when to eat, he's told who he's going to live with, he can pick and choose his friends from among them, he's told when it's playtime, and I actually feel like not being able to say no actually puts him in a position to make the most of the situation. That's just my armchair psychology. But anyway, so we're okay, he's safe. I'm gonna see him on Saturday. Took a while to get a visit, and that's where we are. So thank you. And I uh Mimi will tell us next time she comes up. So let's talk about now. Is there a shorter way to say schizophrenia and psychosis action alliance? S PAA. All right, so SPAA has a vision. And that vision is to see schizophrenia and psychosis spectrum disorders universally recognized and treated as neurobiological brain illnesses. And the mission is to create a movement for systemic change in order to, yes, please, improve care, support, and equity for the millions of people living with schizophrenia and psychosis spectrum disorders.

SPEAKER_02 6:33

So that's and I'm and I'm gonna say when we get Gordon on here, maybe the first thing we can ask him is we just had our annual meeting uh last weekend in Texas, and we changed both of those things that you just read, the vision and the mission. So I think they're even better. So Gordon can tell us what they are when he gets here.

SPEAKER_03 6:54

Let's bring on uh turn on, please enter and turn on your cameras, please. Al and Gordon. Al, please say your name correctly for me so I don't Randy.

SPEAKER_00 7:05

It's Al Guida.

SPEAKER_03 7:06

Guida. Yes, ma'am. Guido, because I wrote it wrong. Guida. Okay. I wasn't that far off, so I'll just put that mistake in there because I'm a human being. All right. So, well, why don't we just start off by telling us the new mission?

SPEAKER_01 7:20

Sure. And and thank you for having us. And certainly we are grateful for all of the advocacy and awareness uh that all of you have been doing for all of these previous uh podcast episodes. Um, we look forward to this conversation. Um, so the Schizophrenia and Psychosis Action Alliance has been around um since about 2008. We actually go a step farther back if you uh trace our history even uh to uh 1985 um in Michigan uh with the schizophrenic uh anonymous organization, which was a peer-based support group, uh, which morphed into uh the Schizophrenia and Related Disorders Alliance of America, which then about two years ago in uh March of 2001 changed into SMPAA or Schizophrenia and Psychosis Action Alliance. What cuts across all of that time horizon is our unwavering commitment uh to support those living with schizophrenia and psychosis. And obviously, over that time span, um uh we have learned a thing or two about um how our um messaging is resonating, where the science is going. Uh, and as Mindy suggested, um, we actually um refocused uh and and um modified our vision and mission slightly, not abandoning anything that you read. All of those things are still very much true. Um, but we um we wanted to highlight some additional aspirational goals and some very specific areas where we think we can have um short-term impact, but the long-term vision is to cure schizophrenia. Um, without that, none of this um really matters, right? But in in the meantime, a cure is not going to happen today or tomorrow. It's gonna take some time. Um, and and and the medical and scientific experts would tell you in order to quote, have um the definition fulfilled as a cure, you need to have both disease-modifying therapeutics plus you need to have preventative measures. We don't fully have either, um, but we believe that the science is becoming strong enough that it's not um out of the ballpark to aim for those things. Initiatives like um a biomarker initiative that our organization is a steering committee member at the NIMH to find uh biomarkers for schizophrenia.

SPEAKER_02 9:40

And for in case everybody doesn't know, National Institute of Mental Health is NIMH.

SPEAKER_01 9:47

Exactly. Um so we think the science is there to say um very confidently that um cure is possible with more in um investment in science and research, of course. Um, but until there's a cure, there is recovery. And our mission is to um try to remove all of the systems level barriers that exist, which are plentiful. They're in every direction for those living with schizophrenia and psychosis. But we also know that um there is proven techniques, um therapeutics, social support systems, et cetera, um, that can enhance and support people for meaningful recovery. And those are the things that we're going to be pursuing, and all of the wrap around education, research, care, and support and advocacy and policy that is required to be successful with all of those things.

SPEAKER_02 10:41

And we did have a little bit of um disagreement, not a lot, but about when we changed our vision to curing schizophrenia. Some people were like, you know, can you actually cure it? But we came around to an almost unanimous decision, and that was because there are so many people that that think it isn't even treatable. You know, so if you have this huge vision, even if it's five years away or 40 years away, as someone said, it's really um it gets people to thinking they we really should accelerate, we should do something. It's just a a really, I think, um markedly different and so much more proactive and positive of a vision. I just um I love it. And I first when I first saw it, I had to pause too because I thought, I don't know if Jim is ever going to be cured. But listening to the people there that have more research knowledge than I do, I came around and I really um I think it's I think we are doing really good work at this organization.

SPEAKER_03 11:48

Can I just say, in a way, I feel like I'm interviewing the three of you now. Like I'm but you know what I'm feeling as the mother of someone with severe schizophrenia, and and you know, Mindy and I were talking before about character letters I'm collecting for my son. I'm sure you guys heard it because you were when you were listening. These were not letters from before he was ill. These were were some of these people have known him before his illness took hold. But these were letters when he was successfully being treated with the medication that worked the best for him. He spent nine years. These are letters of how well he was functioning, even with schizophrenia, with proper treatment. As Mindy and I were saying, you know, 65% of who we could have been, I'll take it for now. But when to hear the word cure just brings tears to my eyes. When you say four or five years, I'm like, bring it on. That is nothing. You know, to aim for that. That is just so exciting for me to hear your mission as it was and your mission as it is. Now, now, Al, you've got more than three decades of experience in health public policy and government relations. And you're both in our nation's capital, you're a top strategic thinker, and you're adept at advancing legislation and public policy. So, so what is, I think I can guess, but what is your role with SPAA?

SPEAKER_00 13:16

And I've I you know I've helped to represent SPAA on Capitol Hill, as Gordon's has indicated, for about five years now. And so one of the debates on Capitol Hill now has a direct relationship to your son's uh current situation. Um there's an active debate on the Finance Committee, which governs Medicaid uh about um Medicaid coverage for uh inmates uh in uh state prisons and county jails. Now that doesn't sound like a mental health or addiction treatment specific policy, but it is because uh there's such a high incidence rate for mental illness and substance use disorder uh among individuals that are uh that are in custody or that are in our uh in our nation's um penal systems. And and I'm sure you've discussed this um in previous editions of your podcast. But essentially we've re-institutionalized um what was a uh a population that was served in in state hospitals in our nation's uh penal system. So uh I think uh the the Cook County jail system and the uh Los Angeles County jail system and the New York City jail system uh uh trade places seemingly in terms of operating the largest inpatient uh psychiatric hospitals in the United States. Uh so so I I'm so I I gotcha. I I you know, I mean, as a matter of fact, I was raised by a man with schizophrenia. My father had uh had uh had schizophrenia. That's why I'm in this business. That's why I've dedicated most of my professional life to advancing public policy in the mental health and uh addiction treatment space. So I've I I've got a you know some understanding of what you've been through trying to raise this young man. And I'm sorry that he finds himself in the in the circumstances that he's now in. And unfortunately, he's living the life that many, many people with schizophrenia live, which is behind bars or in some kind of an institutional setting. And I'm I'm sorry about that. I really am.

SPEAKER_03 15:43

Thank you. And you know, it we're we're hoping that because this is all pre-trial. It's just it's pretrial. So they are working really hard to get him into a jail diversion where he'll get substance abuse and mental health help. Uh, that's an interesting process that I'm learning. And we did, if if uh for our listeners, we did interview Alisa Roth, a uh New York Times journalist who wrote the book, Insane America's Criminal Treatment of the Mentally Ill. So we, if if you're interested in learning more about that specifically, that's a couple of episodes back. So um, Mindy, I'm gonna ask you uh grab a question and ask it in light of what you would most like all our listeners to know about SNPAA and and where it's going, where's the hope?

SPEAKER_02 16:33

Well, I would most like listeners to know that um that it's an organization on the rise. You know, there's ebbs and flows of nonprofit organizations that people start with a lot of passion. And Gordon kind of went through our history, and I've only been on the board a couple of years, but um, it's gone through a lot of iterations. But I feel like with this uh retreat that we had, our annual meeting in Texas this past weekend, that we have arrived where we're on the cusp of doing the most important work that we've ever done. Um, we are we've been kind of a research organization. And, you know, as you know, I'm a former legislator. And when people come forward to policymakers with research, I always think that's really good. But I always ask them then, how do you want to apply that? What do you want us policymakers to do? And that's where I think we are just arriving. So I know Gordon can talk more about that, but before we get to that juncture, I just want to bring in the um the the event that we had last spring that I think was kind of a catalyst for us to get more at into advocacy, and that was the Angry Moms event on Capitol Hill. I was back here in Minnesota at the NAMI National Convention, and I had a chance to sell books there. So I'd already been signed up for that before this one got scheduled, but I hope to be there next year. And maybe Gordon and Al can talk about that and then um also talk about some of our plans for for another one coming up this year.

SPEAKER_01 18:13

Gordon. So we exist because we are trying to shine a light on the realities of those living with schizophrenia and psychosis. We also know that in order to be effective, we have to translate real-world experience into fact-based arguments. So a lot of our research, we don't do biomedical research, however, we do support biomedical research approaches, things that like the National Institutes of Mental Health AMP Accelerating Medicine Partnership for Schizophrenia, the Biomarkers Project. But in-house, the types of research that we pursue, total cost of schizophrenia in the United States study that we did about two years ago, which basically talked about the total economic impact of schizophrenia of $280 billion to the United States across all domains of daily living, um, is meant to give flight and focus to advocacy. Because what we know is the existing policies and laws nationwide are dramatically inadequate to supporting this population. Um, so our intention is absolutely, we have two words in our name that I want to highlight action and alliance. We want to do stuff with people. And we absolutely do not want to go solo. There's this whole thing in the nonprofit world about um working together. Is that a good thing? Is it a bad thing? We think it's an essential thing. Um and we're we're we can't do this alone. But we also realize that there are there are places that we can focus that perhaps larger organizations, either for whatever reason, aren't able to take the lead, um, they can be a secondary or or a third in line, uh, all in under the same umbrella working together. In other cases, we're not the lead. We're we're number three on that list, but we're all rowing in that same direction together because we we can't do everything alone. But what we want to do is shine a light. We want to be nimble, we want to be fast, and we want to be honest about the overall systems level problems and barriers that exist. So this event last May, so it happened to World Schizophrenia Day uh during mental health awareness month, which is May. Um, it'll happen again next May. Um, but we as an organization um had never done a focused event, we had had an event in Capitol uh Cap on Capitol Hill before, but actually flying a lot of advocates in to go visit their local uh elected officials and to really press forward with key legislative priorities is something that that is essential. And we look forward to doing that again in the future.

SPEAKER_02 20:57

And it's too bad Mimi isn't here because we did have Sue Maida on for a program who started The Angry Moms, and Mimi Feldman was actually in Washington at that event. The picture that that um SPAA has on the website of the moms who were there, Mimi's front and center with her big smile. So that was just a cool organization. And I don't think it would have happened with just the Angry Moms. It took the SPAA being nimble and working with Al, who has the smarts to connect everybody and make all those office visits on Capitol Hill. And it also took um a lot of fundraising from SPAA to make that happen. You can't just get into those rooms and without um without all that that planning. So Al, do you want to add anything to that about the uh events?

SPEAKER_00 21:57

I I I I would so so Randy uh It was a dynamic partnership between SPAA and the Angry Moms. And so what I would say is it was dynamic. So it was sort of good news and bad news, right? So the good news is it was uh it was it it was a terrific show of advocacy, and I think it had an impact. Uh it generated uh uh you know a dear colleague letter on Capitol Hill directed at the Food and Drug Administration um uh uh regarding uh attempting to improve access to a 40-year-old generic antipsychotic medication. Okay, so so you know, so therein you can say what it is. Therein lies the therein lies the challenge, it's it's uh it's closetine. Right. And so therein lies the challenge, right? So the fact that the fact that that the that the one of the best medications on the market to treat persons with schizophrenia and bipolar disorder is a 40-year-old generic medication is an indication that uh our pharmaceutical that that we haven't advanced in the armamentarium necessary to properly address the clinical, the day-to-day clinical needs of these individuals. But having said that, it was it was a wonderful show of advocacy and it produced a result, which forced the FDA to respond. As a matter of fact, then Gordon and I were uh you know on Capitol Hill today on the Senate side, trying to approach the Senate mental health caucus regarding the exact same issue with a follow-up letter to the FDA on the exact same uh on a follow-up piece of advocacy in an effort to force the agency's hand to produce more access to this vital medication, which the agency uh for in in a misguided way, as far as we're concerned, is uh narrowing access to uh this life-saving drug.

SPEAKER_03 24:08

So the fight goes on to uh reduce or eliminate the REMs for clozapine. And we invite you to hear our episode with the Angry Moms. But Angry Moms is history is full of angry moms, and we can't do it alone. We need partnership, like you say, working together. So I'm curious about two things. One, Al, you have shared that you grew up with a father who had schizophrenia. So I that maybe fueled your passion for this. Gordon, I'd like to know if you have a similar story that fueled your interest. And then I keep going back to hope. Like when you say we're looking for a cure, can you say more? I know you're not a biomedical company, but you are working. Can you can you tell us where the hope is? Like where, just give us an idea of what sort of research could lead to treatments that are different from from what we have now. I mean, I heard at a NAMI conference that the schizophrenia treatment or mental health mental illness treatment is where like cancer treatment was 50 years ago. It was like chemo or nothing. And what will get us, what will get us past that? So, Gordon, if you would just share if you have a personal story first, and then can we talk about cures?

SPEAKER_01 25:27

Sure. So, like like every family in the United States, my family has been touched by severe mental illness, um, severe depression, OCD, um, bounce of psychosis. Um, so it's very personal and very real. I also have um experience professionally um with different conditions, Alzheimer's, altism, ALS. Um, so I have a lot of nonprofit um insights into how other patient advocacy organizations have built the cause to be as effective as possible. Um, in terms of hope, um, so our organization led a broad coalition. We did it with NAMI, American Foundation for Suicide Prevention, National Council for Mental Well-being, Mental Health America. We were the lead organization to organize what the FDA calls the patient-focused drug development initiative, uh, which has been around for about 15 years. And in many different conditions, there is a focused, dedicated day where the real-world evidence of that particular condition is brought to light in a panel presentation, a pre-meeting survey. Our shorthand PFDD patient-focused drug development meeting occurred one year ago, almost to the day, next week. Um, and it was the first time that schizophrenia had ever been highlighted in this way. Uh, there were 63 staff from the FDA there, and in a year of preparation for this meeting took that long to do. Um, what we discovered was through some pretty detailed analysis, if you look at central nervous system conditions, um, and you look at the number of clinical trials that are in place for the different, you know, uh conditions that fall under that CNS umbrella. Schizophrenia was number two, right? Alzheimer's is very high, a lot of a lot of action going on. Schizophrenia was number two, about 60 ongoing clinical trials. Now, we we started looking into that, like, how does that compare? And and some of our advisors said it's robust. Now, thank God it's robust because there hasn't been anything um novel, innovative, disease modifying. We've got these 40-year-old, 30-year-old, 20-year-old antipsychotic medicine medications with a really lousy side effect profile. We need desperately need new therapeutics. And what we were able to amplify is what matters most to patients. Do you really want to gain 100 pounds and and not be able to easily get to work, not be able to cook dinner, not to be able to go on a date, drive your own car? No, that's not a meaningful, thriving lifestyle. So we were able to highlight what matters most to our our community and to advocate, and I'll I'll tell you with without saying which which is gonna actually be approved, no one knows, but there's an existing um late-stage um review uh for Car XT, uh, which is actually going to be focused on an entirely different brain receptor, um, which is differentiated. So the fact that, without saying whether one is better than the other, we don't know.

SPEAKER_03 28:39

Right.

SPEAKER_01 28:39

But what matters is there's innovation going on in the pipeline, uh, that there's over 50 clinical trials. Like if that doesn't give you hope for better stuff, I'm not sure what does, but we also know that we haven't fully optimized what is already in, you know, in the toolkit, so to speak. That's why we're so focused on removing barriers related to things like clozapine. And there are other issues with other medications where you can't find a prescriber. The prescribers haven't been fully, you know, trained on some of the realities of what works best for people living with schizophrenia. And then you got the whole reimbursement and payer landscape, which adds additional complications to it. So there's just education all around that has to take place.

SPEAKER_02 29:28

So how I one thing I've been, I know I'm on this board, but I would like to hear the history. You know, you went through all the uh different, like I said, ideations of this group. You know, with passion, mental health groups spring up here and there, and then some consolidate, some fade away. And you said, uh, I liked what you said, Gordon, about um action alliance. You know, we're about taking action and we don't always have to be the lead. Obviously, NAMI is the big um organization, the big gorilla in the in the pool. And I was on that board um uh 20 years ago. And then we did focus on uh serious and persistent mental illnesses, but over time that uh that group has gotten to be they kind of bragged about at one time. I heard somebody bragging about we're all things to all people with mental illnesses. And um, so I see this group focusing on schizophrenia and psychosis-related disorders as really important because the fo there's just not as much focus, I don't think, on people with schizophrenia. And I think that's the viewpoint of a lot of our listeners. But could you talk about how we do work with NAMI? Um, because alliances are important. And are there other organizations that SNPAA works with and how do we do that?

SPEAKER_01 30:56

Sure. So our approach is we've got a handout to anyone who will accept our hand. Um in in the last several years, um, NAMI uh and and our organization have so we are both steering committee members on the Accelerating Medicine Partnership for Schizophrenia project. That's a five-year initiative. Uh, we're going into year four uh together. Um we also have a handoff relationship. When you call the NAMI helpline and someone says, I've got symptoms, my son has symptoms of schizophrenia, I'm concerned. Uh, we are their referral partner to our helpline for trying to provide additional support. Um we also uh work uh on policy-related issues uh together. Uh so there's there's there's a lot of of collaborative um intentions. Um, however, we also know that because they're very broad, right, they they can't be all things to all people. And and and certainly there are roles um and and activities that make more sense for us to lead under our banner, which which we are proud to do. But we also know that the scale and and the sheer size of an organization like NAMI is very useful to leverage, um, and there's a willingness at the most senior levels of both organizations to do that.

SPEAKER_02 32:16

That's fantastic.

SPEAKER_00 32:17

And many, if I can, I on this clozepine issue. So, in addition to the angry moms, Gordon uh created a relationship with the uh American Association of Psychiatric Pharmacists and the AAPP. As a matter of fact, we team with them on the briefing, and Dr. Deanna Kelly from the University of Maryland School of Pharmacy was on the hill with us today. So Gordon's very good at creating these relationships both in and outside the mental health community to advance your agenda.

SPEAKER_02 32:49

Wow. I mean you know, you were mentioning a little bit, Al, but I in case our listeners missed it, I think it's just this week that the Senate, the U.S. Senate started a bipartisan mental health caucus with two uh Republicans and two Democrats. And so I'm really proud that one of those senators is uh Senator Tina Smith from my state of Minnesota. And so I know that we're uh I've called and we're gonna be talking with her, I think on a Zoom meeting perhaps uh soon. So I consider that like so wonderful to get to talk to my senator with this or wonderful SPA aide that I serve on the board for. But could you give us a peek at how it went with your meeting with one of the other chairs, I think the one from California. Uh how did that go today?

SPEAKER_00 33:38

It went well. And Mindy, if I could say, so and look at I'm, you know, I've got gray hair here, as you can probably see, and uh I've been a mental health lobbyist, for better or worse, uh, for the best part of 30 years. And so there's a through line throughout those 30 years. Uh members of Congress that are willing to lift water on behalf of mental health and mental illness have a have a family member with an access one severe mental illness, an immediate family member. That goes back to Senator Pete Domenici from New Mexico and uh Senator Paul Wellstone from Minnesota back in the 90s, all the way through Senator Gordon Smith from Oregon, had a son that uh completed suicide uh through Lynn Smith from Michigan, Congresswoman from Michigan to today. So um Senator Padilla, the the Senator we met, the Democratic co-chair of the of the Senate Mental Health Caucus, his mother-in-law um has uh by has a combination of bipolar disorder and schizoaffective disorder. An SNPAA board member uh that lives in California saw a San Francisco Chronicle article and the article that that discussed the senator's personal history, you know, discussed their first date uh uh that the senator had with now Mrs. Padilla, where she discussed her her mother's battle with schizophrenia, with with schizoaffective disorder and bipolar disorder. And the article seemed to suggest that the mother-in-law is on clozapine. And we brought that up today in the meeting. So it went pretty well, all things considered. That's wonderful. Talk about nimble and serendipitous. You know, the Republican co-chair is Senator Tillis from North Carolina. So Senator Tillis had a had a medical surgical condition. He was being treated with steroids. It was a steroidal treatment. And then that triggered the steroid treatment triggered mania. So it triggered mania. So and and then, you know, apparently then it then it it it basically it was to it it mimicked bipolar disorder. He both had mania and then uh uh major clinical depression for a period of two years, as I understand it. And so uh that's that's why he co-chairs uh the Senate Mental Health Caucus. So so it's so so these are new members uh that have stepped out. And and by the way, Randy, Mindy, these acknowledgements would have ended political careers when I began this 30 years ago.

SPEAKER_02 37:02

Some of us of my age and maybe yours, Thomas Eagleton, we all uh remember what happened to him. He had to drop out running for um national office because of just depression and that he had seen a therapist, you know. I mean, that not to mention um if someone, I mean, I don't even know if it was a long-term mental illness, but that just knocked him out. So let me say two things.

SPEAKER_03 37:29

And so it it it makes me feel very good to hear a bipartisan and a committee filled with people to whom this situation is humanized. I we can all agree there are some crazy things happening in Washington right now. And part of that is that the truth isn't there. They're just seeing opinions, they're seeing opinions on social media, but when mental illness comes home to you, to your family, it humanizes it. And now you have to go, wait a minute, this is a real problem. Let's talk about facts. And that makes me feel very glad to know that you were there, that there are lawmakers there that care. Um hold on a second. So I I would like to ask you if we have listeners who are going, how do I get involved? What can I do? How can I help SNPAA? Is there, can they join as a member? Can they engage? How can our listeners who want to join this fight, what opportunities are there for people to get involved?

SPEAKER_01 38:48

There's a couple of different ways to get involved. First and foremost, is we want to be here to help, right? So if you or anyone who you um have in your family, your friendship circle that is looking for any type of support, education, information for schizophrenia and psychosis, we're here. Um we're not 24 hours a day, seven days a week, uh, but during normal business hours, we even check on weekends, reach out to us. We have support groups for those who are either diagnosed themselves or their care partners, and we have a lot of resources we'd like to provide. That's number one. Number number two, we're a nonprofit organization, and like all of them, none of us exist without uh the support of the public and those who believe in our mission through financial donations. Um, that's essential. The third thing is we do want to create a movement for change. And, you know, someone mentioned the angry moms and and you in the trenches, and to to carry forward the analogy. You know, I'm an angry CEO. Al is an angry government relations specialist. We're angry because we have so many fights uh that we must pursue in order to give our community the dignity, the respect that they deserve to be well and to be loved. Um, so we have a ton of work that needs to be done, um, and we need all the help that we can get that's amazing.

SPEAKER_03 40:17

Uh I think the last question would be what haven't we asked you that you would like us to know? And how can people get in touch with you?

SPEAKER_01 40:29

I think the the question, uh, if I were sitting in your in your seat would be, how long is it going to take? You know, you talk a good game, you got this cool vision, it's aspirational, it's the moonshot, but you're more practical because you're you're pursuing recovery um in all of its forms, whatever that means. But how long? Like I look look, you guys know very well there there's not a second that goes by where you're not thinking about the impact. Is your son or daughter okay? Um when will I hear from them again? Um and that's a very stressful um experience. So so when is all this so-called change going to happen? And while Al and I can't sit here and give you an exact day and time and year, there's there's a lot to be paying attention to. The fact that that we can walk through the corridors of Congress and have elected officials, Senator Fetterman's another great example of someone who has actually been hospitalized and can come back to the halls of Congress in a bipartisan way and talk about that experience. And we're talking about schizophrenia and what has traditionally been the scarier forms of mental illness. To the fact that people are actually listening and not running for the hills gives us hope. Um, you're gonna see progress from the clinical trial perspective. There's there's a, like I said, one of the medications is gonna have the final readout of phase three in a couple months. Um, you have a whole host of other phase three and phase two new therapeutics that are right behind it. Um, you have all this action going on on Capitol Hill. And we know if you look at bipolar eating disorders and depression and anxiety, broadly speaking, the fact that you have Hollywood and just part of our normal course of action these days, people freely talking about these traditionally taboo topics, you're gonna see that come toward toward our side of the fence pretty soon as well. So I I've never felt in the history of our organization um more hopeful than what we're gonna see in the next two to three years. Um, and that's still too slow, but I think things are quickening. The pace is is moving faster.

SPEAKER_03 42:49

I love that. Thank you, Al. Anything you want to add? And maybe you can also add like the name of your website and all that as well.

SPEAKER_00 42:56

Oh, uh we're at we're at uh guideconsulting services.com and um or pardon me, guidelobby.com, guidelobby.com. So Randy, I would also concur with with Gordon and look, I what I would say is again, I've been at this for a very, very long time, and public attitudes have changed for the better over those three decades, without a doubt. The public dialogue and discussion about mental health more broadly is is absolutely extraordinary. Absolutely extraordinary. Now, has it caught up to individuals with severe and persistent mental illnesses? No. There is much less stigma associated with uh clinical depression and anxiety than existed in the past. But I think we're making progress and certainly uh discussions among public office holders, among celebrities, uh, you know, among chief executive officers about. Mental health issues, it's it's unprecedented in the time that I've been doing this work. So that leads me to some hope that we can generate the resources necessary to uh expand the public mental health system. Gordon has been talking about the scientific development. My most of my work is try to generate the Medicaid and related financing for a radically underfinanced system. Most of mental health lobbying is we want what they have. We being the underfinance public mental health system want what they, our primary care brothers and sisters, have. That's that's 90% of what I do. I really do think that that these changes in public attitudes is, and we really saw this demonstrated during COVID, is generating a sea change that helps with the advocacy in this space with respect to the resources that the system needs to be able to better support Randy, Mindy, your children.

SPEAKER_03 45:11

And uh and people like your father.

SPEAKER_00 45:13

And the millions of people with schizophrenia that you know that live in the United States.

SPEAKER_03 45:18

Well, as I say, from your mouth to the legislators' ears. I think I played with that phrase a little bit. I know you're fighting you're with us fighting the fight. I mean, truly living the alliance part and the action part for schizophrenia and psychosis. And I thank you so much for the work that you're doing. And so it's guidelobby.com and the schizophrenia and psychosis action alliance. That's the same website, or is there a different website?

SPEAKER_01 45:51

It's sczaction.org.

SPEAKER_03 45:55

Scczaction.org. We'll put that in the show notes as well. And you've just heard it. And Mindy, any final words? I just want to thank you both so much for joining us and for your work.

SPEAKER_02 46:08

I echo what Gordon said. I've never been so hopeful about and else about schizophrenia in general, and um, Gordon about this SPAA organization. I think just like our podcast, we're not afraid to say schizophrenia, three moms in the trenches. And we have you know tons of listeners. We do nothing but grow and grow and grow. And we wouldn't have probably wanted to hang our hats on that word uh 20 years ago. And now we have this organization, schizophrenia and psychosis action alliance. We're proud that that's what we're working toward, and that's who we're working toward. So it gives that alone gives me hope. But all the action that's coming is is incredible.

SPEAKER_03 46:56

Wow, wonderful. Well, thank you so much for joining us tonight. We're Schizophrenia Three Moms in the Trenches and two men of action with organization behind them that gives us hope. Thank you.

SPEAKER_01 47:08

Thank you.

SPEAKER_03 47:09

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.