Q & A TRANSCRIPT
WENDY DOLIN IN CONVERSATION WITH ANDY MILES, WINTER OF 2019
AM MISSD is the Medication Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin. Several questions come from the name alone. Can we start with medication-induced suicide and the related but not widely known term akathisia?
WD Yes. Thank you.
Medications can be life-altering and so important for so many people, but there are many medications, many classes of medications, that can give a person suicidal thoughts. In many ways, it’s not a traditional suicide; we often refer to it as an adverse drug side effect. And the thing about akathisia that’s significant is it gives the sufferer suicidal thoughts. These are not people who wanted to end their life, necessarily, but want to end the reaction. Many words have been used to describe this: I feel my brain is on fire; I feel there’s worms crawling all over me. And a very famous scientist, who actually worked for Pfizer, said death can be a welcome result.
And the word akathisia means motion; it’s an old term, a Greek term, and it’s been around for a long time but people never really named it. People will say, “That’s what happened to me, that’s what happened to a loved one, but there was never a name.”
AM If there was a typical case, what’s the time involved where someone is suffering from that?
WD It can happen pretty rapidly. The mission of MISSD states that when you stop, start or change the dosage of any medication, you need to be aware there could be a change. In Stewart’s case it happened six days after he started the medication; other cases it can be a month, but to be aware and to be in tuned with your body.
My main point for people is this: If the reason you’re taking the med, whatever it may be – and instead of feeling better you start to feel worse, I think that you need to talk to your doctor, prescribing doc, and say, hey, I’m feeling terrible.
AM And the organization is named in honor and in memory of Stewart Dolin. Please tell us who he was and what his story was.
WD He was a very wonderful husband. I mean, we were high school sweethearts. We met in 1968. We were together 42 years, when he passed away. Unbelievable father, very well respected attorney, loads of friends, tons of outside interests. He was an avid skier; he liked to, you know, bike. And in 2010, I’d say June-ish, he was starting to experience some stress at work and -- actually at my suggestion, I said, why don’t you talk to a doctor about getting on a medication? And he did. And so six days before he died on July 15th, he started the generic version of Paxil called paroxetine, and almost from the time he started it, you know, going backwards in time, there were so many strange things that occurred that week. And I remember, the night before he died, he was tapping his knee at dinner and going, “I don’t get it, Wen, I still feel so anxious.” But he was a very proactive guy and was doing exercise and he meditated. And then, the very next day, he got up from his desk after having a lunch meeting with a client where he had a salad with a dressing on the side and made a future date for two weeks, got up from his desk, walked to a train that he never would have taken – it was actually headed to O’Hare Airport – and ended his life. I mean, no history of mental illness; no – zero debt. You know, both kids were well-launched and on their own, and it was just a great time in our life. But he had some stress at work, just like many people do.
And after researching this – actually, it wasn’t me; I was in a state of shock – friends discovered the word akathisia. And once I read about it and did some research, it was like one of those moments where you know you just can’t go back, that this has to be your mission for education.
But a superior guy, well-loved – in fact, his law firm, Reed Smith, gave him a tremendous honor. There’s something called the Stu Dolin Leadership Award, and it goes on in perpetuity for the team that best represents his style of leadership. So he was, you know, a well-regarded partner, client, friend. I mean, our life was pretty golden.
AM And in his case, he was going on the SSRI for the first; it wasn’t an adjustment.
WD No. It was starting. In his case, it was starting a drug.
AM And are those cases fairly common?
WD Yes. We hear a lot about – actually, the whole mission. I mean, we hear – we get tremendous write-ins about people who started a drug, or people who were trying to taper off a medication, or they were changing the dosage. I mean, I have to say, they’re pretty equal in the stories that we hear regarding akathisia.
AM And once your friends had looked into this and made you aware of akathisia, were you basically persuaded from that point on that this was the cause of your husband’s death?
WD Yes. I remember a friend of mine who really got this going – unbeknownst to me; she was doing her research – and I remember about a month after Stewart died walking my dog and she said to me akathisia. And I was like, you know, what is this? And I am a social worker by profession. I had never heard of it. And I got home that night and I googled “Paxil, akathisia and suicide,” and there was this wealth of information, and when I read the symptoms and signs, and Stewart had been exhibiting so many of them, I just was in shock, and I realized – you know, I guess if this could happen to Stewart – and I say this all the time when I speak – this could happen to anyone, and it became my life’s mission.
AM Yeah. You say that many different classes of medications can cause akathisia, from antibiotics to antidepressants. Can you elaborate on this?
WD I think that we’ve just heard many of these drugs – the mood stabilizers, the antipsychotics, SSRIs – and then people – one of our board members, a newer board member – in her case, her father – again, very similar to Stewart: no history of mental illness, you know, great relationships – he had been prescribed Prednisone for some back pain and then he was given Soma, which is a muscle relaxant, and I think when he was coming off the Prednisone and starting the Soma, he became akathisiac, and he killed himself. And you know, then you hear from the – when I speak a lot with military families, they talk about Neurontin, the pain med, or the malaria drugs. So, you know, I can go on and on, but there’s just been a litany of – a laundry list, I should say, of medications that can have this side effect.
AM Yeah. And MISSD as an organization is not antidrug. And we live in a country where in 2016, for example, some 325 million prescriptions for antidepressants were filled, including 15 million for Paxil and paroxetine – that, according to IMS Health, a health care information company. These drugs are ubiquitous, and many people are convinced that they need them to live and, in many cases, for good reason. What have you found to be the best way to approach these delicate issues, and what best practices do you advocate for those taking antidepressants? I noticed, for example, that MISSD supports the practice of tapering and close monitoring during the strenuous process of getting off these SSRIs.
WD Thanks. That’s always a great question. The reason that MISSD is not antidrug is we are well aware of the fact that lots of people have been helped by these medications, and I think because we don’t operate a scare campaign and are not trying to ban medications, I think it’s just awareness. I mean, I think the way we address this antidrug is, if you’re getting signs or symptoms, talk to the prescribing doc. If you feel that you are really not acting yourself, we say go to the ER, you know, call 911. We also advocate the buddy system, that if you are stopping or starting or change the dosage of a medication, let somebody know.
So our protocol is – actually the director of MISSD came up with a wonderful analogy that makes so much sense to me – is we tell people, look both ways when you cross the street, because there’s the risk you could be hit by a car, but you still cross the street; you just have awareness. So all we are saying to the public is just be aware. If you are starting to act differently, then I think this is a conversation you need to have with your doc, and it’s just to us awareness.
AM Yeah. So The New York Times said that akathisia is a fairly common and well-known side effect of antipsychotic medications, commonly used to treat disorders like schizophrenia but increasingly given for a variety of mental health complaints, including depression. But the association with antidepressants is not as well recognized.
WD Yes. You’re absolutely right. It’s not. I mean, no one has really wanted to use the word akathisia because I think that it always has a negative connotation. And so I think that people just have felt it but they haven’t had a name for it. You know, we get a lot of information from people that write in and let us know that this has been their effect. And it resonates with them.
AM And I imagine that those sorts of testimonials that you receive on a pretty regular basis are one of the many things that keep you going and doing this.
WD Right.
AM And it’s been several years now.
WD Yes. I mean, we have produced two videos and our first video, which I believe was released maybe three, four years ago, as of last night hit the hundred-thousand mark. And with that hundred-thousand mark, many, many people write in and say, “This happened to me, I didn’t know it had a name.” And I think it’s been kind of hidden. You know, I think a lot of the pharmaceutical companies, when they’ve talked about it, they refer to it as emotional lability; they don’t really call it akathisia. And as a therapist, to me, emotional lability is you get a little moody. This is not giving, you know, someone who’s non-suicidal suicidal thoughts. So I think that we learn a lot by when we speak and when we put things out there.
AM And the people who have come into your life through this cause, many of whom have also suffered the loss of a loved one, what has that added to your life?
WD I think what that has added to my life is the fact that it just reinforces how important our work is. In fact, two other board members came to us because they did some research, and one doctor had said it was the worst case of akathisia they had ever seen in their practice, and that facilitated the daughter of the person who passed away to reach out to us. Another woman, whose father had just died, saw me on NBC 5 News Investigates and was like, “That happened to my father,” and reached out to us. So I think it’s given me just so much motivation to know that we’re making a difference.
What’s even more fascinating to me is, you know, when you start out an organization in honor of someone, you know, the first few years it’s friends and family of Stewart Dolin, friends and family of the board members, but the last two or three years, I’d say at least a quarter of the people that attend our MISSD events are people who have heard of us and come from all over the world, literally, because they believe this is the place where they can get some comfort and understanding as to what happened to their loved one.
AM Yeah. And [with] what sort of frequency do you mount events like that, and is there one coming up?
WD Yes. Thank you. October 17th this year we’re having our annual event. That will be at the Wintrust Grand Banking Hall on LaSalle. That’s the big event, but thanks to what’s been happening, we are out there twice a month doing something incredible. You know, I’m teaching classes at schools of social work, speaking to veterans, doing podcasts. Quite excitingly, this summer the Royal College of Psychiatrists had invited me to attend their conference in July in London, and this attracts over 3,000 U.K. physicians, and after me submitting my materials, they felt that the message was so important that I’m going to be on a panel with other doctors that will be discussing drug side effects. So it’s unbelievable to me the opportunities that have come from this.
AM Yeah. And you’re not just involved in an education and awareness campaign, you’ve also been involved with a legal battle that’s gone on for several years. In 2017, you sued the drug manufacturer GlaxoSmithKline (GSK) for product liability stating suicide risks associated with the drug paroxetine were concealed. A jury concluded GSK failed to properly warn of these risks and awarded you damages. An appeals court, though, overturned the ruling and you will be petitioning the U.S. Supreme Court to review the case. Or have you already?
WD Yes. We filed in December a petition for the United States Supreme Court to hear our case. Interestingly enough, when we were overturned in the Seventh Circuit, it wasn’t because they didn’t – you know, were questioning, you know, what killed Stewart, it was more a technicality. The issue in the lawsuit was, who’s to blame? Was it GSK or the FDA? The lower court held GSK accountable, the Seventh Circuit held FDA accountable, and because there’s a split currently right now in the country, we filed it to the Supreme Court, which will basically be deciding mostly on whether or not – you know, who’s responsible. But what has come out of this litigation has been it’s given wonderful press to the word akathisia. And interestingly enough, the jurors in my lawsuit actually saw the real drug studies where close to 30 people died during the drug trial and 40 people developed akathisia, and they did not feel the need to report this. So this has just brought up all sorts of issues.
And another big issue, which the public is not aware of, is that generics in this country are protected. In other words, 85 percent of Americans pretty much take generics. Being older and being on Medicare, I have no choice; that’s the only thing that’s covered. If you are killed, maimed, or anything happens to you, generics are protected.
So what was significant about my jury was they looked at it in a different way. They didn’t care whether Stewart was on a generic; it became a product liability case, because if you lie about your product in the state of Illinois, you need to be held accountable, and I think when the jury saw the real side effects, I mean, how could you not be offended by that? And that’s why, after six weeks and a gruelling trial, they sided with us. I mean, whether or not the Supreme Court takes – you know, hears the case, and it’s a very obviously small percentage, I feel gratified that this case is important enough that it even is, you know, worthy of being, you know, going to the Supreme Court.
AM Yeah. But if they don’t pick it up?
WD It’s basically done. But I’ve always, in my mind, put my lawsuit in one category and the work of MISSD in the other. And so yes, it will be disappointing, of course. I feel that it’s an important issue because you’re leaving Americans with no legal recourse. I mean, in our country there’s a remedy for everything, and this is an issue that just has no remedy. The state supreme courts are split, the circuits are split, and so someone has to decide on this. But the work of MISSD goes on and, you know, will never stop.
AM So late last year MISSD did a campaign to bring Akathisia awareness to riders of the Chicago Transit Authority trains. You’ve also released public service videos, created an akathisia presentation for first responders and offer a free one-hour continuing education course. Are these all projects of the organization’s education foundation?
WD Yes. I mean, the main thing that we use our money for is to raise awareness, and because we have an international and national and local presence, just through talking to people, we figure out what people need. And by going to all these conferences, we have expanded the populations we work with, and we’re willing to go anywhere. I mean, we’ve done a lot of work recently with veterans because this group of returning vets, sometimes vets who haven’t even seen combat, are killing themselves, I’d say, 22 to 23 suicides a day. And just recently the Congress is starting to look into this – whether it will actually get some attention. But two bills have been introduced to look at the drug cocktails with veterans that are suiciding. And so these are the things that we do. In fact, the train signage program has been immensely successful and we just recently authorized more monies for more train cars, and we’ve decided that – I believe it’s the Pink Line that goes out to many of the medical schools and so we are going to start a campaign that way.
AM And what makes it an effective campaign, in your view?
WD I think what makes it an effective campaign is that I think people can really relate to it. When we just started MISSD, we primarily focused on the SSRIs, or antipsychotics, and through – shared at MISSD, through talking to people, we found out that this could include Malarone that you take – you know, malaria pills that you take when you go out of the country. It can include Chantix, the smoking cessation drug. And I think that as – since our message is broad and it’s public safety-directed, I think we get a great audience, because people can relate to that. They know of someone who had a side effect; they personally have had a side effect. And so I think that really draws their attention.
AM And what about some of the other things I mentioned? For example, who is the one-hour continuing education course aimed at?
WD That was actually – I’m glad you bring that up because that course was actually approved by the National Association of Social Workers. We went through quite a rigamarole to get that program launched. And one of our other current MISSD education projects is we are now taking that program and working with the American Medical Association to get CMEs [Continuing Medical Education] so that this will then be available to doctors. And it’s a wonderful tool and it’s free. I mean, you go to MISSD.co and it’s there, it’s free, because that’s, you know, we are an education organization and this is the way we educate people.
AM Have you encountered doubters, naysayers who –
WD You know, that’s a great question. We really haven’t. If I had to look over – the majority of comments we get – you know, there’s a few, there’s a few who even though we say all the time we’re not antidrug, there’s a few people that are worried that we could possibly be discouraging people, but I can’t say enough: Every single solitary thing and every action of MISSD does not lead to an antidrug message. In fact, articles are sent in to us – you know, people have been really significantly hurt by a drug company and they’re very angry: We don’t put those articles on the MISSD website.
The interesting thing is if we get any criticism, a lot of people blame their prescribing doctor, and our reaction to that is I actually saw the Dear Doctor letter that Stewart’s physician received regarding Paxil where they said, you know, basically this was the next best thing since sliced white bread, and it reduced the risk of suicide, when literally they knew that there was an 800 percent risk of suicide with their medication. So those tend to be the criticisms that we get mainly, and we’ve tried to respond to them. In our videos, when I speak, I say you need to call your prescribing doc or go to the emergency room or, you know, call 911, and we get very strong reactions from some people who feel like, well, all they’re going to do is going to give me more meds, they’re going to make it worse. But quite frankly, other than never taking a medication to begin with, there’s really nothing else we can suggest.
Also, part of the work that I’ve done with MISSD, which has been very exciting, is because I’m, you know, an internationally recognized advocate, I’ve been involved with several D.C.-based, you know, safe-patient awareness groups, and when I did work – was asked to be part of the National Center for Health Research’s training program, what was shocking to me was the nature of drug trials and how sometimes there’s so few people in these drug trials, and they’re not followed for a long time. So there’s a lot of issues that are out there that gives you pause.
AM So I understand you won an international award from ISEPP last year.
WD Yes. This was really exciting. I was nominated for this, and what ISEPP stands for is the International Society for Ethical Psychology and Psychiatry, and they do their humanitarian/special achievement award, and they gave me the award for akathisia and the awareness that I’ve raised internationally. So it was a very exciting award to receive.
AM Well, congratulations.
WD Thank you.
AM OK, so where can people find out more and get the best information about this?
WD If you go to our website, missd.co, you will see that we have a section called In the News, where we are continually posting current articles regarding, you know, medications. 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. Also on the website is the section Contact Us, and we get one or two shared at MISSD questions all the time. We also are on Facebook and Twitter and we, you know, encourage people to go there. I mean, our best thing that we ask of the viewers is just if you like this podcast, if you found this topic interesting, learn more about akathisia and just send it to your contacts. And this is the way we spread our message. And I hope that people will really look at the signs and symptoms of akathisia. They’re listed in the videos, listed on the website.
WENDY DOLIN IN CONVERSATION WITH ANDY MILES, MAY 30, 2019
AM Do you have an update on the Supreme Court?
WD Yes, I do. On Tuesday of this week the Supreme Court denied our appeal to be heard, and also it denied sending the case back down to the Seventh Circuit. We were hopeful with a ruling that they had made on the drug Fosamax, which had gotten sent down to the Third Circuit, that they would do the same for us. And unfortunately, they didn’t. So right now the case is officially dead.
AM OK. And is there any recourse there or –
WD I don’t know. I mean, we’re talking. My lawyers are talking about a few things. But I have no idea. I mean, I would assume it’s very, very speculative, if anything.
AM Yeah. And this just happened, two days ago.
WD Just happened two days ago. I was really disappointed, obviously, because in my mind this is a common-sense argument, and that is, if you lied about your drug and someone has an adverse drug reaction, someone needs to be held accountable. From lawyers I’ve spoken with, in our country, there’s recourse for everything that happens. And yet, when it comes to drug reactions, they’re not held accountable. It keeps going on and on and on. Monsanto lied about glyphosate and its safety; now we know it’s a carcinogen. I mean, Purdue Pharmaceutical lied about the opioid, saying it wasn’t addictive and it was completely addictive. And I can go through drug company after another – Johnson & Johnson with talcum powder that’s causing cervical cancer. And we get this information from lawsuits where good law firms can do their research and subpoena records. And so what bothers me is that the Supreme Court basically said it’s the FDA; you know, it’s called preemption. And you’re leaving 85 percent of Americans now without legal recourse, and that’s staggering.
AM So I know you have thoughts on FDA composition and funding. What are some of the concerns you have there? I know I was surprised when you cited a statistic as to the funding mix the FDA receives. I would have assumed it was entirely government-funded, but it’s not.
WD I find the most disturbing statistic about the FDA is that I thought they monitored everything, and literally, you submit a drug study trial to the FDA and they take some time to approve it. But I thought they were a neutral body that would actually review the data, and what I came to find out is whatever the pharmaceutical or device companies send them, they’re basing their rulings on that. And in the case of my case, we found out that they had lied about the problem with suicides over the age of 24. They warn up to the age of 24, but then they stop at 24, even though people died during my drug trial, the drug trial for Paxil, and people became akathisiac and they never bothered to report it to the FDA.
The other interesting dynamic is what they call the revolving-door policy, that people who work for the FDA go to work for Big Pharma and then Big Pharma goes to work for FDA. So you literally aren’t getting any kind of what I consider objective information.
I think the other big thing that’s disturbing to me, and I think – this is something that’s bothered me – is Stewart took generic Paxil called paroxetine, and what came out in our pretrial motions is that even though GSK, the maker of Paxil, had created the label – they did all the studies – the fact that Stewart took paroxetine, which is the generic – this is how the argument went: GSK said, we didn’t manufacture the generic, and then the generic company goes, well, we’re just following your formula, and then the FDA seems to be – is supposed to be monitoring things, and there’s this whole back and forth as to who’s really responsible for changing the label. And meanwhile, nothing gets done.
AM Yeah. So there’s another group of people that we haven’t talked about yet, those being people who suffer the effects of Akathisia and don't take their lives. There is a MISSD video that shows two of them in states of great distress. What is life like for people suffering chronic Akathisia?
WD That’s a great question. Actually, it’s very interesting: When I first started MISSD, I was pretty much focused on what the – akathisia that had an instant onset. But then, through our work and everybody writing in, we found out that this was chronic; it could go on for years, or permanently. And I think what people write in is just the inability to be still and pacing and tapping and rocking back and forth, and they cannot get comfortable, and then the internal, you know, torture. I mean, that – you know, that breaks my heart. People describe it, as in our other video, you know, that their brain’s on fire or their tongue feels like they’re sucking on a battery. And I think that it’s really, really tragic. I mean, when you talk to people who have – you get how they describe it. I mean, if your viewers are interested, if you go to any of the two akathisia videos, there’s comments from people who have written, and their internal experiences are awful.
AM So later today we’re going to head to CAN TV for an event you’re doing with veterans. What is the story of your becoming involved with the veterans you work with, and how do military service and akathisia typically intersect? I would imagine PTSD and post-op recovery are a couple leading reasons why former military personnel become medicated.
WD I became aware of the problem with overmedication of the military when very, very early on, when MISSD did their Out of the Darkness walk. At that time we had t-shirts with our logo on the front and the definition of akathisia on the back. And inevitably, during that walk, people kept tapping me, and they were inevitably military people and said, “I never knew it had a name, I didn’t know what this was about, and that’s what happened to my loved one.” And we started to – and then all of a sudden, around that time they were doing a lot of stories in the news about suicides in the military, and I had read an article, I believe in Military Times, where it talked about this was the most highly medicated group of veterans coming back from war, and their suicide rates to today are still 20 to 22 a day. And so we decided that this was a very important population, so we put resources towards going to – I forget the acronym, but it’s the Army physicians convention and we went to D.C., we went to Virginia. And ironically, one of our board members knows the founder of K9s for Veterans, Mike Tellerino, and I met with them and, you know, heard their stories. And then I also spoke at one of their events, You’ll Never Walk Alone, and again, everybody kept coming up to me: “I knew this was a problem, I didn’t know it had a name.” And so Mike and I did our first show just introducing their viewers to what is akathisia, and then this show tonight will be further discussions of what is akathisia, and also there’s been some interesting legislation out there that we’re hoping could make a difference.
I think what’s tricky about this is, yes, veterans have PTSD; they have trouble adapting to civilian life; there’s guilt; there’s multiple deployments; there’s multiple reasons why they are having struggles. But what I find staggering is no one has yet done the correlation between medications and suicide. So this new bill that I will be talking about tonight actually is – the second bill that’s just been introduced but no action yet, where they’re – the VA is finally saying, what drugs were they on, how long were they on them, what were their combos?
And the other staggering statistic about the military is I met vets who came up to me at these events and talked to me – one person was on 18 drugs, you know, and there’s this – and the problem is, VA services are limited and so they’re given three months cocktails of drugs with no in between, and what ends up happening is they take the medication; they’re not feeling great, so most doctors up the dosage. Then, after that, they introduce another drug to kind of counteract that, and then if you are having pain from your injuries, you’re on Neurontin; that leads to – can lead to suicide. So you get these multiple cocktails with lack of regulation. And, you know, we hope to raise awareness.
AM So this is a bill that’s been introduced in the House in D.C.?
WD Yes. I mean, there were two bills. There was H.R. 4640 that was introduced in 2016, and it still says “Introduced,” if you look up the bill. And then in January of this year, another bill was introduced. I believe it’s Veterans Overmedication and Suicide [Act]. So there seems to be an awareness now that this could be a contributing factor, but whether or not any action is taken on it, I have no idea.