EPISODE 4: KIM WITCZAK
[Andy Miles] Hello and welcome to Akathisia Stories, a podcast co-production of MISSD and Chicago's Studio C.
MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.
In this fourth episode of Akathisia Stories, we hear from Kim Witczak, whose husband, Woody, was having trouble sleeping in the summer of 2003. He paid a visit to his regular doctor and left with a three-week sample pack of Zoloft. Kim was out of the country for the first three weeks Woody was on the drug; when she returned home, she was alarmed to see what was happening to her husband of almost 10 years.
[Audio: Kim Witczak] I will never forget: He came in with his blue dress shirt, which he had an undershirt under, and it was just drenched with sweat; dropped his briefcase at the backdoor; went into a fetal position on our kitchen floor with his hands wrapped around his head like a vice, going: “Help me, Kim; help me. I don’t know what’s happening to me. It’s like my head’s outside my body looking in. Help me, Kim. Help me.” And I remember just looking at him – and I had no idea, but we calmed him down. You know, I’m like, “Let’s try breathing; let’s try praying; let’s try yoga. If this job is so stressful, quit.” You know, I had no idea.
In a moment, Kim will share Woody's story — and her own. Her advocacy work has taken her to the nation's capital not only to testify before House and Senate panels but to serve on the FDA Psychopharmacologic Drug Advisory Committee.
[Audio: Kim Witczak] Being appointed on this committee I think is a success in that I’m not going to be just the rubber stamp, which I see a lot of. So for me, I think it’s a success that I have a seat at the table. But I’m often the only one that votes no.”
Kim Witczak is a leading international drug safety advocate and speaker with over 25 years professional experience in advertising and marketing communications. Kim co-founded Woody Matters, a nonprofit dedicated to advocating for a stronger FDA and drug safety system. She also co-created and organized the international, multi-disciplinary conference Selling Sickness in Washington, D.C. In 2016 Kim was appointed Consumer Representative on the FDA Psychopharmacologic Drug Advisory Committee and is on the Board of Directors of the National Physicians Alliance and MISSD. She is also an active member of the DC-based Patient, Consumer, and Public Health Coalition, making sure the voice of non-conflicted patients and consumers is represented in FDA-related legislative issues. She recently talked to me via Skype from her home in Minneapolis.
AM You say that you like to call yourself the accidental advocate. Let’s begin our conversation with the story of how that came to be. In 2003, your husband, Woody, had just started his dream job as vice president of sales with a startup company, and as a consequence was having some trouble sleeping. What happened then?
KW Yeah, so I do like to call myself the accidental advocate because this would never be my choice. But it was kind of – sometimes we don’t get a choice. And as you’ll hear the story, you’ll understand why I became the advocate that I am today.
In 2003, my life looked very different than it does today. I was married to my husband, Woody, for almost 10 years. He loved life. He was full of life. And we had a great marriage – you know, just living life, planning the future, planning to have kids. And at the same time, he had just started his dream job as vice president of sales with a startup company, selling electrical lighting, and he was really excited because he was very into the environment and wanting – you know, he was excited about “You can save half the money!” – you know, he had this – I mean, it was a really – I mean, he was very excited about this. But, you know, with a startup company, he also was having trouble sleeping, which is not uncommon for entrepreneurs at all. But he went to his doctor, his general practitioner that he’s gone to for years, and was telling him he was having trouble sleeping. And Woody was a guy that typically needed eight hours of sleep a night, and usually got eight hours of sleep.
So, anyways, he went to the doctor; talked about this new job that he took. And after, like, a 15-minute conversation, Woody left with a three-week sample pack of Zoloft and was told to take these drugs; it would help take the edge off and help him sleep. So, Woody, being a guy who – a military kid; you know, doctors have fixed his, you know, his knees in sports, et cetera; you know, he listened to what the doctor said, which is not really uncommon for most people and, you know, the way we have been kind of trained to think. So Woody went home with the three-week sample pack of Zoloft, and that’s what he was given for helping him sleep.
I happened to be out of the country when he got these drugs. So I was out of the country the first three weeks that he was – when he was given Zoloft and started taking Zoloft.
AM And you write on the WoodyMatters.com website that the three-week Pfizer-supplied sample pack that Woody came home from the doctor with automatically doubled the dose, unbeknownst to him, from 25 to 50 milligrams after week one, with no cautionary warning given to him or the family about the need to be closely monitored when first going on that drug. And as you say, you were out of the country.
KW Yeah, I was out of the country. So one of the things with these Zoloft, this sample pack, is, first of all, there was no packing that came with it. Right? It was just a three-week sample pack that – which is, I guess, is pretty standard, that after week one you kind of step it up. So week one was 25 milligrams; week two and three, it was 50 milligrams. And there was no warning. So you have to go back to 2003. There were no black box warning. There was no association known with suicide and antidepressants at that point. So there was no reason to even be warned, you know, back then, other than what somebody else knew – the FDA and drug companies have long known. At that time, we were not made aware that there was any link between antidepressants and suicide.
So Woody, you know, took the three-week sample pack, did what the doctor said – you know, take week one, week two. And I was out of the country, as you mentioned, not even in town. I was in New Zealand on a shoot. So I wasn’t even near Woody for the first three weeks that he got put on the drug. But during that time, we were still talking almost every day from New Zealand and Minneapolis, and, you know, I didn’t physically see him, but I know my parents and people that did see Woody noticed that he was a lot more anxious. So he definitely was having these, you know, side effects that he wasn’t aware of. You know, he still had the ones that the doctor told him about, you know, like, “You might have some diarrhea; you might be” — ironically, “you might have some trouble sleeping,” which is why they gave it to him in the first place, which doesn’t even make sense, now looking back. But again, I think Woody did what most people do, which is just trust the doctor is giving them something that will do them – will help more than it will harm.
He did have the side effects that the doctor mentioned that might happen, which is – you know, again, if you listen to the commercials that were airing back then, as well, you know, you had the Zoloft with the bouncing ball, a little white, you know, saying: “Are you anxious to talk to your boss? You may have a chemical imbalance.” And then you have the Paxil ones at the time that were, like, a label, you know, like, “I’m shy,” “I’m nervous,” “I’m,” you know, “anxious,” but then as soon as you take Paxil, you now have a name. Now it’s, “Hi, I’m Kim.” You know, so that was the environment that we were living in back then when Woody got put on this drug.
AM So when did you start believe that the drug was causing these problems for Woody?
KW Well, I don’t think at the time we realized any of it. Right? I will never forget: I had just gotten back from New Zealand; I was excited to see him. And I will never, for the rest of my life, I will never forget: He came in with his blue dress shirt, which he had an undershirt under, and it was just drenched with sweat; dropped his briefcase at the backdoor; went into a fetal position on our kitchen floor with his hands wrapped around his head like a vice, going: “Help me, Kim; help me. I don’t know what’s happening to me. It’s like my head’s outside my body looking in. Help me, Kim. Help me.” And I remember just looking at him – and I had no idea, but we calmed him down. You know, I’m like, “Let’s try breathing; let’s try praying; let’s try yoga. If this job is so stressful, quit.” You know, I had no idea.
So I would say I didn’t know that the drug was associated with it. I’m thinking, “Oh, jeez, if you’re like” – you know, I didn’t know what was happening, but he did call his doctor and we got him calmed down. And he did call the doctor and told him, and the doctor said, “Oh, well, you’ve got to give this drug four to six weeks to kick in.” So, of course, then, you know, why would we be thinking it’s the drug? Right? We never questioned the drug. And Woody, the next week of his life, every night he would come home and say: “Kim, what do you think of hypnosis? I’m going to beat this feeling in my head.” Then it would be: “What do you think about acupuncture? I’m going to beat this feeling in my head.” “What do you think about yoga?” So everything he was talking about was beating this feeling in his head. And at that point, never again thought anything of questioning the drug. I didn’t know to question the drug. I don’t think Woody knew to question the drug. And it wasn’t until after the fact that we started to learn all of what we did, which then eventually led to my advocacy of getting the black box warnings for suicide put onto these drugs. But during the time we had no idea.
AM So at this time, I mean, he’s exhibiting these changes in his behavior and making it clear that he’s suffering from something that he’s never suffered from before, but I have two questions about that. One is, did he have any history of any sort of panic attacks? And the second question is: At the time, was he still able to conduct his everyday life? I mean, was he still going to the job and that sort of thing?
KW Yep, I would — so history of any depression, anxiety, panic attacks? No. He had no history of depression. He had no history of mental health or any other mental, you know, conditions, such as anxiety, other than, you know, maybe not being able to sleep, but nothing in the sense of panic attacks, which is what I think he was clearly having.
And then, in terms of was he able to conduct – absolutely, a hundred percent. Woody, during this time, was still running. He was – but he couldn’t – he couldn’t do his normal run. He wanted to train for a full marathon. He was only running about three miles a day, but before going on the medication and having these impacts – or this effect, he was running probably 10 miles a day, and I know this because he kept – I mean, he was pretty anal and he kept his running journal, just so he could keep track of all his miles. So during that time he was still doing that. He was still doing all of his business. You know, he had just started. And, I will also say, when we – when Woody started this new opportunity with the startup company, we were very methodical in that we always lived within one paycheck, so that we could have this flexibility of either, you know, staying home and having a kid, starting a business, so we didn’t have any financial – we didn’t have financial issues. We didn’t have marital issues. So there was nothing else that was really added to the, you know, into the mix, per se, other than, the only thing that had really changed in Woody’s life was the addition of putting Zoloft into his body. The only thing.
AM So you just mentioned the running log that he was keeping at the time. I was wondering, was he leaving any accounts of the suffering he was experiencing in any kind of written form?
KW No. There was nothing. Nothing. You know, I think Woody was this – if you knew his attitude, it was like, “I’m a Can-Do!” Like, I think about his resume and, like, how he’d always sell himself. Like, he was literally one of these most positive people. He would walk in there. He literally loved life, so he would not be one that would be sitting there writing things down, other than telling me that he didn’t know what was happening to him. You know? Like, other than that verbal, but now, you know, looking back, I think, God, that is such a sign that if somebody is acting out of character or “out of norm,” you got to be paying attention to it. Right? That was definitely out of character, out of norm for our family and with Woody.
And even thinking about the couple days leading up to his death: We had just had a huge party at our house, and he was like total, classic Woody, you know. But the next day we were getting ready, we were cleaning up, and he was a little – you know, he was tired. So we were laying there and he’s like, “Oh, when you get back, we got to get figured out – the only way we could have kids was doing in vitro, so – he was a planner, so he wanted to have that, you know, planned. We, you know, just planned our 10-year-anniversary trip to Thailand. We were going to Hawaii with his family at Christmas. So we had all these, like, plans, but the thing that I’ll never forget, he said when we were laying there after this big party, he goes: “Kim, I don’t know what’s happening to me. I’m having the worst nightmares that I’ve never had before.” And I’m like, “What do you mean?” And he goes, “I don’t even want to repeat them, they scare me.”
And I, again, look back and that was another classic something that was out of the character, out of norm for Woody, because we used to always joke about how he never dreamed. He’s like, “I don’t remember, I don’t dream.” And I’m like, “Yes, everybody dreams.” So the fact that he always would say he didn’t dream and then he was talking about these nightmares that he didn’t want to repeat to me because they scared him, and so I believe somewhere in those nightmares there were some really bad thoughts that were coming through.
But to answer your question, did he write anything down? No, other than expressing some things to me, and, you know, my family noticed that he was a little shorter; you know, like he was really anxious, like he was – they had him over for dinner, when I was out of town, and they noticed that he was – he couldn’t sit down at the table; he was constantly moving. And he would be going to the bathroom back and forth, and he was, like, so out of character, again, from how Woody would ever have been, because he was such a chill person and he would be definitely sitting and conversing with the family, and not anxious and moving around. So that was another thing that, again, hindsight, looking back, was out of character.
AM And did anyone at that party mention anything about observations that they made?
KW No. Nothing. Woody was – he was on fire. He was his classic self. I would never have guessed. And even people — you know, because obviously it was a couple days later that he was found dead — people literally, at that point – nobody could believe that Woody actually took his own life. Like, nobody could believe it when they actually heard the news, and even people who were at the party, they were like, “What? That was classic Woody.” And these are people that have known him for the last, you know, however long that we’ve lived in Minneapolis.
AM So do you want to talk about that day?
KW Sure. So I had just left again out of town for – I’m a producer in advertising, so I was out of town in Detroit and left. But nothing made me think there’d be any reason not to leave. Right? So I wasn’t worried about it. It was just another trip that I normally take. And we both have traveled, you know, our entire marriage together, so it was not a big deal. But anyway, so I remember calling him and we talked all the time; you know, back then we didn’t really have – I mean, I guess there were cell phones, but, you know, emails. He would always call me in the morning. I’d check with him. We’d, you know, talk many times during the day. So the last time I talked to him it was on a Tuesday, you know, August 5th evening, and I remember, like, talking to him and he seemed really out of it, like, “Yeah,” like, almost like a zombie. So I feel like, now, again, you know, I should have – looking back, he was probably having one of those, like, completely-out-of-his-body kind of experiences, but anyways, he was – I’m like, “Is everything all right?” “Yeah.” Like, he sounded like a zombie. And I’m like, “I love you.” “I love you,” whatever. So it was just – “Do you want to go?” And he’s like yeah. So that was it.
The next morning, I went to call him and it went into voicemail. I was like, that’s weird. And then I kept calling him. No answer. I was like, that is so weird. Then I would send him an email, going, “Woody, where are you?” Like I’m, you know – again, not thinking that there would be anything wrong. I’m just like, where are – more like, “We talk all the time; where are you?” And then it wasn’t until I call our home voicemail and there was a message from one of the partners in his business who said, “Woody, where are you? We’ve got this huge meeting down” – it was with Target – “and where are you?” And I thought at that point, something’s not right, because Woody would never miss an appointment. He was super responsible.
So I kept calling and then I would call his mom. And then I started – I did start getting panicked a little bit, because I thought maybe he, like, fell and hit his head or something, you know, maybe because he was so tired and all of that. So again, not thinking – this was not what I was thinking. So I finally call my dad around, like, 7:30 at night and I said: “Hey, Dad, would you do me a favor? Go check our house because I haven’t heard from Woody all day and, you know, he’s been really tired and was stressed on his job, so I’m just afraid, like, maybe he fell and hit his head.” My dad’s like, all right, because my parents didn’t live that far away from – so my dad goes over to my house and Woody’s car was out in the driveway. No big deal. Goes in our house. No sign of Woody. No sign, anything. Then opens up our garage door because it was a detached garage and goes out there, and there’s Woody hanging. And I will never forget the call. I can’t even imagine what it was like for my dad. My neighbors were outside. I can’t even imagine. But I remember getting the call and I was at a studio in Detroit, now like 8:30 at night. And he’s like, “It’s bad! It’s bad!” I’m like, “What do you mean it’s bad?” He’s like, “Woody’s dead.” I’m like, “What do you mean?” Like, I couldn’t even, like, get my head wrapped around. I’m like, “What? He’s dead?” I couldn’t even remotely get my head around “Woody’s dead.” And I was like, “What do you mean he’s dead?” And he’s like, “He’s hanging.” I’m like, “Hanging?” Like, there couldn’t have been anything that would ever say that Woody, who loved life, would ever hang, like, go and hang himself. But he was hanging from the rafters of our garage and dead at age 37.
So obviously I’m in Detroit thinking, how am I going to get home? But my dad, obviously – I can’t even imagine the shock – called my mother and then my sister and brother-in-law, and they come over. And obviously, then, the whole whatever happens when somebody dies, you know, the coroners show up, the police show up. And at that point, the coroner called and said – wanted to talk to me, because obviously I’m his wife, and wanted to know if he was on any medications. And I was like – you know, I didn’t even really know what it was. Right? I’m like, “Um, yeah, he was taking something; it’s probably up in our bathroom, up in our medicine cabinet in the bathroom.” She goes, “Well, there’s a bottle sitting under a light”– it’s so crazy — under a light on our kitchen counter was this bottle of Zoloft. And she goes, “There’s a bottle of Zoloft down here under the kitchen counter right as you’re walking out the door.” I go, “Yeah, that’s it.” And she goes, OK. And she said, “Well, we’re going to have to take it with us; it might have something to do with his death.”
So I think that was kind of the first clue for, you know, obviously my brother-in-law, who was there — I’m sitting in Detroit thinking how am I getting home, what just happened? My whole life fell apart. You know, I was like completely a zombie and not even understanding what had happened. But I do remember, when she asked me that, wanting to know if there was a note, because Woody — as I said, Woody and I traveled a lot and we left notes all the time, because, again, you know, texting wasn’t a big thing then. So we left notes. It was usually like “honey-do” lists, you know, “pick up my laundry,” whatever. But always, he would leave notes that would end with like – or start with “Hello, sunshine.” There was no note — nothing — but this bottle of Zoloft sitting at the kitchen counter under a light on the way out the door. And so that started one thing. And then the front page of our Minneapolis Star-Tribune had an article that said the U.K. finds link between antidepressants and suicide in teens.
So the combination of that night and the deep knowing of who Woody was – Woody would have been the last person who would ever take his own life. Ever. Ever. And I still – it’s what motivates me today, because I knew him. Like, there’s nothing – so instantly – instantly, obviously, my life had fallen apart. I was trying to figure that. But my brother-in-law, my sister’s husband, went home and Googled “Zoloft and suicide,” and all of this stuff came up in Google. And so he spent the next, like, week going, my brother just took his life, like, this guy who loved life? Like, he was trying to wrap his head around it and started doing all this research and found that the FDA had hearings in 1991 when it was just Prozac on the market and there were all these random suicides that were happening, and at that point, there was an FDA advisory panel, much like what I sit on today, where they were looking at the link, the possible link between antidepressants and suicide and violence. And that was in ’91. So he’s, like, watching all these YouTube videos that were out. And finally, after, you know, we, you know, obviously did Woody’s funeral and ceremony in Minneapolis and we also had a subsequent one in Chicago, but he came to me and he goes, “Kim, I think I found out” – “I think I discovered what happened to Woody.” And literally, the next – I mean, I could show you – I have binders in my office of just articles we start pulling, start researching. I have shelves full of books, and some of the first books that we started reading, like The Antidepressant Fact Book by Dr. Peter Breggin; there was another one by Dr. Healey, and Dr. Glenmullen, and started reading it and literally, it became, like, this is it; this is exactly what happened to Woody.
AM So when in this process did you come to know the word akathisia? Did it come up in the initial research that you did?
KW It was probably almost initially because they talked about akathisia in several of these books. And then it was – so eventually I did have a lawsuit and hooked up with Baum Hedlund out of L.A., and they’re one of the first, you know, law firms that has taken on the industry. You know, there were all kinds of suicides back then, even some pretty famous ones like Phil Hartman and his wife; they had represented that family, the murder-suicide. But, you know, for so long these companies had been able to get away with, you know, blaming the victim, like, “Oh, they were sad; they were depressed; they had money issues; they had – they were, you know, an alcoholic.” I mean, just all the excuses that I see that they blame. And I think the power with Woody back then is that there was nothing. Like, he literally went from “this” to “this” in the short five-week span. So when we contacted the law firm, we were telling them about this scenario where Woody kept telling me that his body was outside his head looking in – or his head’s outside his body looking in. And almost immediately, the law firm’s like, “We’re interested,” because they had a document that they had where Pfizer, it was somebody from a South Africa FDA-equivalent agency writing in to Pfizer chief medical officer, Dr. Roger Lane, stating that they had doctors reporting of patients who were on 50 milligrams saying that they were detached from their bodies. And Pfizer writes back to the — you know, in this email saying, “Oh, what you’re describing happens on all SSRIs; we don’t know why.” And so it was the exact same thing. Right?
So then you start linking all of these other documents, and one of them being an article, a journal article that, again, Dr. Roger Lane wrote, that was not discovered in the lawsuit because it’s – in public, but it was in some random medical journal where they describe akathisia, that it happens on 3 to 5 percent of the people, but if a person gets akathisia bad enough, quote-unquote, “death could be a welcome result.” But what was the horrible part of that is — so follow-up in one of the other documents was Dr. Roger Lane wrote an article to Pfizer sales people and said, the attached journal article, describing akathisia, where death can be a welcome result, is not suitable for general practitioners, only neurologically inclined psychiatrists. So that right there says they intentionally kept it from GPs, and where, you know, 70 – they somewhat estimate 70 to 80 percent of these drugs are written by GPs.
AM So, as you said, you were involved with this legal action, and at the same time, your story was being picked up by various media outlets and you were going public in a pretty significant way. Was it difficult to go public and then to withstand things like the questioning that you mentioned where they’re interrogating you about the quality of your marriage and that sort of thing? And also, did it help having your brother-in-law, Eric Swan, as a partner in that journey?
KW Well, I can answer that one first and foremost. (Laughs.) I couldn’t have done this without Eric. I’m so, like, lucky that I had my brother-in-law, that was the one that put it together, but also, he was, like, my support. And he also, like, knew how to navigate D.C. Like, D.C. – like, the funny thing is Woody loved D.C. I hated D.C., which is ironic. And so I was lucky because I had somebody like Eric who knew and loved politics and loved all that stuff. So he was able to help navigate. But also, more importantly, he was my support. Like, I’d be writing – I mean, we’d stay in the same room, and if he was being interviewed right now, he would say yeah, she drove me crazy, because I would rewrite and rewrite and rewrite my speech until like four in the morning. He’s like, you’ve got to get to bed because you’ve got to go testify in like – whatever. He was awesome. So yes to that one.
Being public? You know, this was never about a lawsuit so much as it was about making sure that Woody’s story is told, because we started learning all of this and started seeing all of these documents and starting reading this, and meanwhile, you know, the media and all the advertising – and I’m in this business – is promoting this, like, “You may have a chemical imbalance.” And then you start looking at it; you’re like, Woody’s story – his death will not make a difference if it’s not told – right? – and the lessons from it, because our family already knows. And it was too late for our family. So if we could do something to save another family so they don’t have to ask after the fact, “How come we didn’t know"?” then it made it.
And you know, Woody always said, “I will never judge my life based on my job, my money, how much I — you know, my career; it will be based on my family, my friends, and leaving the world a better place.” And he was a guy that was, you know, fighting city council because they were putting up two cell phone company towers in our neighborhood and wanted to know if I wanted to get involved and go get people to sign in the neighborhood and go down to city council, and I’m like: “No, what’s the use? You’ll never win.” And I remember he said, he goes, “Kim, I’d rather try like hell and lose than do nothing at all.” And I feel like that spirit of who Woody was is actually what kept driving this.
And then, you know, I had another friend just last week – or two weeks ago took his life and everybody called me and they’re like, we think it’s the drugs, and so for me, I think it’s getting worse and it’s why we need to keep the media attention, podcasts, everything, the message going about the dangers of these drugs. I am, like MISSD, Woody Matters and me personally, I’m not against the drugs. I’m not antidrug. I am pro-information. I’m pro, you know, transparency. It’s about making sure that we have all of the information. It’s about informed consent. You know, we need to have all of the information, not just the information that the companies and the industry, both, you know, the medical industry as well as pharmaceutical, want us to believe. It’s a big machine, and mental health is big business. So I guess that’s the importance of why telling Woody’s story and continuing this all these years later is my real motivating factors to make sure we educate the public.
AM And you just mentioned that you think that things have in some way gotten worse. In what ways would you say that’s true?
KW I would say – well, suicides are skyrocketing. The antidepressant prescription rate is higher than ever. So for me, when I look at that and go, common sense, something’s not working. Right? So then I also now sit on the FDA advisory panel as the consumer rep representing the public, and I see what’s happening at the approval level of the new drugs that are coming on the market. So the big thing right now is treatment-resistant depression, which means that because there’s no drug on the market for that particular condition that it can have – it can be fast-tracked through the FDA with less stringent clinical trials. So, you know, the U.S. has always been known as being the gold standard, having, you know, two double-blinded placebo-controlled studies. Well, that’s not what’s happening with new drugs that are coming to market for treatment-resistant depression. So basically, what that is saying: If you’ve been on antidepressants, one or two and you’re still depressed, you may have now treatment-resistant depression. And now, all of the organizations that I have learned, like National Alliance for Mentally Ill [National Alliance On Mental Illness], the American Suicide Association [refers to either The American Foundation for Suicide Prevention or American Association of Suicidology], that all take money from industry, now come to these hearings saying that we need new drugs because the current antidepressants on the market don’t work. So that’s what I’m saying. It’s getting worse. And then you have people that go into — like doctors, and if you have that same kind of thing of like somebody experiencing head outside the body, “My god, I’m getting worse; I feel like I’m having these psychotic episodes,” the doctors are thinking that it’s their “disease” getting worse, so they now are starting to put them on another drug, so it’s just this system. And who’s paying the price? We are, you know, the public, for this.
AM So in 2016 you were appointed consumer representative on the FDA Psychopharmacologic Drug Advisory Committee, as you just alluded to. And you advocate for a stronger FDA and drug safety system. What successes would you point to?
KW Well, I think being appointed on this committee I think is a success in that I’m not going to be just the rubber stamp, which I see a lot of. So for me, I think it’s a success that I have a seat at the table. But I’m often the only one that votes no. And that to me is really frustrating. It makes me [ask] “Why do I even keep doing this?”
AM So does that “no” vote have an impact, or is it, you’ve registered your vote but then they just move on do whatever they’re going to do?
KW I would say the “no” vote happens and it gets – it’s part of, you know, the record, and what will happen is, you know, anybody, the media, the public can go back and look at all those transcripts. But I think what’s more important than just the vote, it’s the questions that we get to ask. I will say I feel like I had one success. It was for a Parkinson’s psychosis drug. It was the third time they had come to get this drug approved, but now they’re using fast-tracking breakthrough-designation, so, you know, they only have to have one clinical trial, and it got quickly rushed by. Right?
Fast-forward: I remember leaving that hearing. I voted no and same with the person who actually represents the disease population, so she had Parkinson’s. Both her and I were the only two “no” votes, and I remember leaving, “What’s the point? These things are all going to happen?” I go, “Mark my words, there will be deaths associated because there were deaths in it, and it will end up in trial lawyers’ hands.” I remember thinking that. Well, two years later I get contacted by CNN and they want to know – because they started investigating the number of deaths; there’s already been 700 deaths associated with this drug. And they wanted to know why I voted no. And then we got to, you know, start talking about that, and, you know, my advice to the media and to, you know, CNN at the time is to really go and when you see somebody votes no, go find out about the “no” votes. It’s not about the yes, because, of course, they’re going to go out and promote it as yes. And I said also, you, as media, you’re – the media has a job that they need to do more than just repeat the press release that comes from the company that says “It’s a breakthrough drug for Parkinson’s patients,” or for whatever patient group, because that breakthrough is misleading because that breakthrough is really something that was allowed through the FDA and how they were able to fast-track it. But it’s a loaded word for the public because people think, oh, my god, this is, like, the latest and the greatest. So there’s some of that that the media does need to know.
So those are some of the things that I would say I feel like – I hope that I’ve, you know, been able to make a little bit of a dent in it, but at the end of the day, it’s still sad because, you know, suicides are up and I see what’s coming and how it gets approved and what the messaging is around it. And I always want to say, maybe less is more.
AM And whose interests do you think the FDA is most interested in? The public’s or big pharma’s?
KW What does the website and the mission statement say and what happens in reality – (laughs) – may be a little different. The industry’s paying the FDA to approve the drugs and to review their drugs, and then there’s all of – you know, look at the FDA commissioner who just left, Scott Gottlieb, who just went to go work as a board member on Pfizer’s board. And so I think there’s – but yet, at the same time, there’s some – there’s amazing people at the FDA doing their job, who work tirelessly for us, the public. So it’s one of those where I think, you know, it’s the top, the revolving door.
AM So moving beyond the FDA to speak more broadly, what are some of the things that you’d like to see happen?
KW Well, first of all, I think the public needs to – we need to start educating people at the – and we, the public, need to start pushing back. I think we need to deal with the narrative of and really start the cultural attack of, like, the quick-fix-pill-idea mentality, because I think, you know, one of the things with – especially in mental health, it’s big business. I mean, health care in general is big business, but mental health is really big business. And it’s something that we all have that we have to – you know, we’re mental, spiritual, physical beings, and I think we need to be rethinking the way that we deal with some of these, you know, mental conditions that we have, such as anxiety and depression and, you know, start looking at other alternative ways besides just throwing a pill at them, because, you know, when you look at — you go to your doctor and they have the mental health questionnaire that people think is – in intention is a good thing. Right? Oh, good, we can talk about, like, how’s things going at home? But if you actually look at the questionnaires that they’re using at the doctors’, it was created by Pfizer, the PHQ-9 form. And it’s like, “In the last two weeks have you cried, have you felt sad, have you less than worthy?” I’m like, I felt all of them because I’m human. You know, so I think it’s about educating the public, so that’s what I’d like to see. I’d like for the public to feel empowered with information so that they can ask the questions of their physicians and feel like we can have a real conversation and have some true informed consent, versus just throwing pills at everything.
AM And have you seen a shift in the people you talk to, in their mentality, over the years as to, you know, a certain a level of drug skepticism, or would you say that the majority of people that you encounter kind of believe that these drugs are the answer, just as the drug companies would like them to believe?
KW I would say – you know, obviously I’m out there; I speak to a lot of people and people will be like — they know where I’m at; they know where I come from. Right? So I feel like they’ve – maybe a little bit educated or, like, oh, you know, that’s nice. But I think it’s still them, not me – right? – meaning, “Oh, well, that’s out there, but they don’t know my situation.” Or, you know, “I still need that.” So I feel like there maybe is a little bit of skepticism, but I don’t think we’ve gone far enough in really understanding how it’s all connected. You know, and that’s one of the projects I want to work on is kind of, you know, follow the money. And all of the places that are being fed into the system that’s creating this narrative, you know, from the advocacy groups to the media to, you know, obviously the companies to, you know, the social media to – and follow the money and the education in the universities and where that money’s coming – so I want to, like, kind of show how big the system is, because I think when you start understanding that, you might be like, oh, wait.
But at the end of the day, like, last week I got — my sister had sent me a text and she’s like: “Hey, what do you know about this drug? My friend at work just got put on it for hot flashes.” And I was like, huh – and it was a generic. You know, it was just the chemical name. So I didn’t know the chemical name, which is part of what I think we need to also, like, the public needs to be a little bit smarter on that, too, is like when they give you and everybody’s being told we have to take generics, and of course, there’s legal issues with generics that if something happens you don’t have – other than in a couple states you have legal rights. But it’s more to understand, so, like, this drug, I went and looked at it and I was like, huh, I had never even seen it, so I went and Googled it and I was like, what? It’s an antidepressant that they gave her for hot flashes. And this woman started having these reactions but didn’t know that it was an antidepressant. So she was given an antidepressant for hot flashes, so I immediately said she’s got to push back at her doctor; like, why – they didn’t even tell her. Like, they should be telling her, “FYI, we’re giving you an antidepressant and there are some, you know, things” – but didn’t tell her anything; just said this would be for taking care of hot flashes.
And I said, what kind of research was done? So she shows me it was done by a psychiatrist and it had 25 people in this study for hot flashes. And I’m like, that is something that all of us should be concerned and really ask those questions, because this woman shouldn’t – I mean, hot flashes? An antidepressant for hot flashes and wasn’t even told that it was an antidepressant?
AM So how often do you hear from people who have questions or have stories to share, and have you heard from people that your advocacy has had an important impact on their lives?
KW Well, I do hear from people all the time through Woody Matters and through just my advocacy work. But, unfortunately, the people I hear from are usually people that learn after the fact and they start putting pieces together. And I think, on the one hand, it helps make peace for them in what happened to their family. Right? But to me, that’s not good enough because they had to learn – and I’ll get, like, emotional – they had to learn the hard way that we did, and so that means, like, I don’t want people to ask me or to contact us after the fact. I mean, sure, like, it made me feel better when I started putting it all together, but it’s too late. I want people to start paying attention before – and nobody should ever have to learn after the fact what other people have known. So I want to see more proactive on the front end, and, you know, I have some ideas and working on some Netflix, but shows like what you’re doing and the advocacy and work that MISSD is doing, just even getting that word akathisia. But I guarantee, if you went and did a study right now and go ask a bunch of doctors – not psychiatrists; I want you to go ask general practitioners, the doctors that we go to every day – right? – ask if they know what akathisia is. I guarantee they don’t.
AM And you’ve encountered that?
KW Oh, yeah. And they all think I’m still making this — but this is where the power of documents and the importance of why we need documents made public is because now you can actually – when I go show doctors some of these that are not my – they’re not my words anymore. It’s Pfizer’s words; it’s the FDA’s words, and they start seeing this and it’s like, whoa — that’s pretty hard to argue with. But I think, at the end of the day, all of us, including our doctors, we need to be willing to try on what if what we’ve learned or been told is wrong? What if? It’s not saying it is, but just asking the question, “what if?”
AM So after 16 years, you’re still very active in this. It sounds like you might be as active as ever. How often do you find yourself in a position where you’re telling this story in this sort of detail as we’ve gone into today? And is it painful recalling that experience?
KW I actually appreciate going into some of the detail because I think there’s some real knowledge in the details of what happened to Woody in terms of what he was experiencing, so that that maybe could help another family. I think most of the time, I also, because I’m so far removed and it’s way beyond Woody now – you know, he’ll always be my inspiration, but it’s way bigger than Woody. So I think that in time passing, that’s less. But from the beginning, I feel like in some ways this was given – was why I ended up or why I started out saying “accidental advocate.” It’s like it became my purpose. And I was always able to somehow hold myself together from the first time and working and why I was asked to testify in the Senate is because I didn’t – it became – it was about Woody, but it was bigger. I was able to see it bigger than Woody. But I would always say, when people are like, oh, you’re so strong, I’m like, “Yeah, because you don’t see me go home at night, and so you don’t get to see my day to day.” So it’s – you know, I forget sometimes because I can, you know, quickly say, “Oh, and my husband was found hanging,” and I forget that people are like – it startles them a little bit. But I’ve said it for so long so it’s like – I’ve kind of, like, numbed that piece out, in a way. So I appreciate you going into detail.
AM And do you think your work will ever end?
KW I don’t – you know, I really thought – (laughs) – I really thought back in the day, when I first started out that – I’m like, all right, I’ll just get the black box warnings on and I’m good. But as we started to go through it, I realized it’s way bigger than just antidepressants. It’s our entire drug safety system and how the FDA works. And also, sitting in the marketing space – and I love — like, I love my business, advertising, and I still work in it, but, you know, part of – I think the – you know, we’re one of the only countries in the world that allows drug ads.
AM With cute little figures, as you pointed out.
KW Yes. Of course, it’s all about distraction. What I’ve seen is it’s not just pharma who’s out there lobbying against it. You now have the media companies and you have advertising agencies and you have the national advertisers associations that are all — they’re all in support of keeping it, because obviously it’s big business. And so I just think that there’s got to be some – if we’re not going to fix it there, we’ve got to have some responsible advertising or responsible communications.
AM You just were talking about how you can say things like “he hanged himself,” you know, kind of reflexively, but after 16 years, are you still in some form of shock that this is what happened to Woody?
KW Oh, a hundred percent. A hundred percent. I still, to this day, I’m like Woody’s gone? And I’m like, “I can’t believe this is how you actually died.” You know? Like, “I can’t believe that you actually took your own life. I can’t believe that” – that’s why I was saying, like, when I hear myself retelling the story, that – and I, at the time, I never, of course, beat myself up or questioned why didn’t I know, because I didn’t know, but I look back and I’m like, god, why? I mean, it’s so obvious. You know? And that’s, I guess, the thing that comes with time. And it’s also why, I think, you asking these questions has really gotten me to think differently about the kind of questions and being OK with people going into, like, some of those details, because I think those are the critical details that could have been places in time that I could have pushed and said “This is the drug,” and we could have maybe had an opportunity. But a hundred percent I look back and I go, I can’t believe this is literally my life. (Laughs.)
AM So you said that going back to 2003 and getting involved with this, Woody was, you know, of course, your motivation and continues to be, but in 2019, how would you describe the motivation to get out and do interviews like this and serve on the FDA committee and the whole list of things that you do? Has that changed?
KW Well, I feel like it’s been my purpose. I feel like it was, obviously, in the beginning a huge part of my healing, but now I feel like I have a responsibility. I feel like I have been given the ability, I’ve been given the experience of what has happened. I know what I know and I feel like I have a responsibility to do my part because I don’t want anybody to have to ask after the fact, how come I didn’t know? And I feel that is what drives me today. It feels like a responsibility.
AM So what’s the most important thing that someone listening to this can take away from your experience?
KW Just in mental health, I’ve thought a lot about this and what has happened and I could have, you know, easily let this whole thing destroy me. And did I have some depression? You know, did I go through some of that, my own experience, and how did I deal with things? So I think there’s that piece of it that just got me thinking differently about mental health versus just if they – and I remember right after Woody died, the doctor asked if I wanted to take something. And I remember, I looked at her and I go, “Uh, I think this is what killed my husband, number one, and number two,” and I said: “My husband died – aren’t I supposed to hurt? Like the pill is never going to bring him back.” And then she said to me, “But you don’t need to hurt.” And I think about that now and I’m like, but I kind of did need to hurt because that’s why I can sit today where I sit; it’s because I went through that dark tunnel and came out of it.
AM That’s stunning, that she would have said that.
KW Yeah. Or just the belief that we don’t need to hurt, but I don’t think life was ever meant to be lived in – feeling nothing — right? — being numbed out. I think life is the lows so you can have the highs and the highs and the lows.
But I would say for people listening to this: Number one, I think you know your loved one better than a doctor will ever know them. Right? And so if something doesn’t feel right and you – doesn’t seem right, just keep in there and be advocating and educating yourself. And when they say, well, that might be your “disease” getting worse, if somebody’s having a side effect, challenge them, ask them, get informed, because I think we are our own best advocates, and to really think twice about just handing over our power to, like, the doctor, which is being educated by the, you know, the companies or the medical journals that are still being written by the companies. You know, the company, the industry is so deeply ingrained in our current medical system that I think we do need to become our advocate and asking, like, is that the right – is that really the right course for it? Because these drugs were never meant – these are serious, mind-altering drugs that have serious side effects and consequences. They’re not a benign pill. They’re not like that white bouncing ball that Zoloft personified in the commercials. They are serious drugs. They were never tested to be on for multiple years.
AM So I want to ask a final question. It sounds like once you came to know of akathisia, you never doubted that that’s what killed your husband.
KW Oh, I would say that whole head outside the body and “death can be a welcome result” describing what akathisia is, I think it was a classic case. There’s no other way to even describe what happened to Woody. You know, I always say it’s a medication-induced suicide. I’ve said it from day one. And I will continue to say that. And even when I get contacted by people, it’s — you know, like I was just saying, it was very interesting having a friend of mine — it’s the first friend that I knew personally before who took their life. Right? And he was a really well-known photographer, very successful, had some anxiety, got put on meds, and took his — he was found hanging. And I went to his funeral a couple weeks ago, and it was crazy sitting there 16 years later, almost 16 years later, being fully present and aware, and yet I felt – because when Woody – you know, when I went through that with Woody, you know, I was in total shock and it was a blur, and all of that, but now I’m sitting there and I could feel the enormity of the loss, of their loss, and my friend, his business partner who had to find him. And so it’s a pretty big – a really big — I guess, you know, my advocacy has a pretty strong emotional component to it.
If you'd like to hear more of my conversation with Kim, there are three podcast extras on the Akathisia Stories web page: you can find it at studiocchicago.com/akathisia-stories. In the segments Kim talks about becoming involved with MISSD and the first time she met MISSD founder Wendy Dolin; the legal battle she waged in the courts; her work producing the Selling Sickness conference, and more about her work with the FDA panel and its involvement with the drug Chantix.
[Kim Witczak] Days before the FDA advisory panel had all the information, and it was a Thursday, I get a call from the FDA saying that it had been brought to their attention that I have an “intellectual bias,” and I was removed. I was recused from serving on the committee. And I think, you know, when the FDA said I had an intellectual bias, I remember saying, what do you consider an intellectual bias? Because if you consider me and asking all the questions from a safety point of view, I will always have an intellectual bias because that is where I’m coming from. It’s safety that matters to me, once it’s on the market.
Again, that's studiocchicago.com/akathisia-stories. Look for the “podcast extra” link for this episode. [Or click here]
If you'd like to find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start.
[Wendy Dolin] "If you go to our website, the section that says What Is Akathisia? you will see the two MISSD videos, as well as we have an educational PDF that you can print off. We also are on Facebook and Twitter. If you like this podcast, learn more about akathisia and just send it to your contacts."
That's MISSD founder Wendy Dolin.
You've been listening to the Akathisia Stories podcast. We'll have another episode next month. If you'd like to share your own story for this podcast, please email firstname.lastname@example.org, and please share this podcast and subscribe. I'm Andy Miles and I'd like to thank Kim Witczak for her time and candor, and I'd like to thank you for listening.