BBC Sounds, music radio podcasts. Hey there, I'm Asma Khalid. And I'm Tristan Redman, and we're here with a bonus episode for you from the Global Story podcast. The world order is shifting. Old alliances are fraying and new ones are emerging. Some of this turbulence can be traced to decisions made in the United States. But the US isn't just a cause of the upheaval. Its politics are also a symptom of it. Every day we focus on one story, looking at how America and the world shape each other. So we hope you enjoy this episode and to find more of our show, just search for the Global Story, wherever you get your BBC podcasts. Today we've got a special BBC investigation for you all. It's a really, really fascinating story. But I also want to note that this episode talks about sex and there's a mention of suicide. So please take care while listening and if you have little ones around, you might want to listen to this at a different moment. When Charlene was 42 years old, living in Massachusetts, she began taking this new medicine to help her with mild depression. The drug worked. Her mood improved. But after taking it for a while, her behavior also started to change dramatically. I had this kind of insatiable sex drive all of a sudden and that meant seeking out men wherever I could seek them out. What Charlene didn't realize, because the thought never crossed her mind, was that these changes were a side effect of her new medication. Millions of people all over the world have been prescribed drugs like the one Charlene was taking. They're called dopamine agonists and they're used to treat various illnesses from Parkinson's to depression. But for an alarming number of patients, these drugs don't just treat the symptoms of those diseases. They also have side effects that can fundamentally alter people's personalities. I'm Asma Khalid and today on the Global Story, a new BBC investigation has heard from hundreds of people whose lives were turned upside down by prescription medications. How did this happen? And why do patients say they weren't sufficiently warned? Well Noel, it's a pleasure to meet you. Thanks for coming on the show. Thanks for having me. Noel Titheridge is an investigations correspondent at the BBC and he's been working on this investigation for over a year. I kicked off our conversation by asking him how he first came across the story. Well, I heard about a case going through the courts in France. So that involved a French man who's suing a pharmaceutical company saying that they didn't properly warn him about side effects of the medications he was on. He says that he developed compulsive sexual urges, what's known as hypersexuality, that ruined his relationship. He also said that he had lost more than $100,000 to compulsive gambling. I'd never heard about this before and I couldn't believe that prescription medications could be that powerful. So I wanted to know how widely are these drugs used and how common are these side effects? Okay, and I know your reporting specifically looks at this class of drugs, dopamine agonist. Can you walk us through what these drugs are used for? What do they do? What do they do to our brains? Yeah, well, they're a family of drugs. They were developed and manufactured by multiple companies. These drugs are widely used for Parkinson's and then other conditions like restless leg syndrome and even in some cases, depression. Now, the way they work is they boost dopamine activity in the brain. So dopamine is this chemical that's vital in coordinating our smooth movements. So the drugs can be really effective for Parkinson's sufferers that suffer from shakes and tremors. But we also know dopamine is that key chemical in driving feelings of motivation and reward. You know, the idea of the dopamine hit, this need for incident gratification. And it's thought that these drugs can over-stimulate these feelings of motivation and reward. So just to be clear, you've been investigating this now for, is it more than a year now? And spoken to hundreds of people, you say, who took these medications, who had very similar problematic side effects. Yeah, that's right. You know, over 350 people in all have been in touch with us. Many of them talk about ruinous sexual urges, about compulsive gambling that costs them tens, hundreds of thousands of dollars. And what's really striking is that many of them say that they weren't properly warned about these side effects. And this has had devastating consequences. So as you say, you have spoken to hundreds of people. And I know you've done some original reporting for us here at the Global Story. You spoke with a woman by the name of Charlene, who lives in the U.S. Can you tell us a little bit about her? Yeah, so Charlene's 52. She's from Massachusetts. At the time, it was 2016. And I was seeing a psychiatrist for depression. I'd had depression on and off since I was a teenager. I was functioning, though. I had a career, had a master's degree, was doing well, had a partner. So life was going pretty well. It was just these symptoms that I wanted to see if we could control better. So she was already on an antidepressant drug, but her psychiatrist prescribed her another drug from this family that we're interested in called dopamine agonists. And it was this drug she prescribed alongside her antidepressant. So Charlene starts taking one of those dopamine agonists. And what happens after she starts taking that medication? Well, for the first couple of months, nothing. And that's actually common to lots of people that have contacted us. It's not like these side effects immediately emerge. And that often makes it hard to spot them when they do emerge. Now, Charlene works with blind people. That was her job. She helps them, teaches them navigational aids, things like canes and guide dogs. And it was while working with a client that she'd already known for some time that her new behavior began to emerge. I was working with this client who was very flirtatious with me. So I would tell my colleagues, oh, he's very flirtatious with me, but never in my mind would I have thought I'm going to have a relationship with this person. Ethically, it wasn't something I would do. But then one day something changed. All of a sudden I was very bold and went up to him and just said, why don't you just kiss me? And he did. That launched me into so much more danger from that point on. I should provide a little bit of context. Imagine you're a person who's had this kind of depressive state for your life. And then suddenly this dopamine is in your brain and it's pushing it to the highest level that it can get. It feels pretty good. You think your depression has been cured. And it feels like you're living your best life. And part of living my best life was, well, I had this kind of insatiable sex drive all of a sudden. And that meant seeking out men wherever I could seek them out. I would go to bars and get all dressed up and just pick somebody up at the bar. It can be anybody on the street. I went into the local pizza place and found a guy. The local 7-Eleven found a guy. I needed to have sex with as many people as I could have sex with. That's what it felt like. There was this, you know, a lot of people who were like, I'm not going to be able to get a job. Like there was this drive that you had to do this. So for Charlene, this had consequences. She'd been in a stable relationship for six years. She confessed to her partner that she'd been sleeping with other men and he ended the relationship. But crucially, he would have had no idea that her new impulsive behavior could be attributable to the medication that she's on. But after the relationship, the consequences begin to get even more serious. Some of these sexual encounters that she described involved significant physical abuse. So that one summer of 20, it was 2017, I had estimated I had sex with about 25 different men. And they would bring a friend the next time and it would be a threesome and then a foursome. And then I think it got up to one time five, five different men. It ended up turning into some very unsavory characters. And so when you think about how that feels in the moment, it felt good. It felt like I was really elated doing that, that satisfied that need. But then after you realize, why am I having sex with five men? But it doesn't occur to you that something's wrong. Something's wrong with you due to the medicine. It's just you kind of think, well, I'm 42 or 43. Maybe this is what it's like to not be depressed. Maybe this is what it's like to be perimenopausal. And there was no kind of thinking at that time that something was really wrong. Gosh, no, this sounds really, really awful. And it sounds like she also doesn't know why these things are happening to her. Were the behavior changes that Charlene exhibited largely sexual behavior changes? Did she experience other types of compulsive behavior? She did. Many of the people that have contacted us talk about developing multiple impulsive behaviors. Now, hypersexuality was a really significant one for Charlene. She also developed other forms of impulsive behavior, which again had significant consequences for her. There were so many things that I did compulsively. I would dye my hair day after day until it finally all started falling out and I had to shave it off. I was driving aggressively, getting into road rage incidents with people. One of them was spending money, so I'd go into any kind of clothing store and buy a lot of clothes. Just spent money until there was no more money to spend anywhere and there were no more credit cards I could get. And then I ended up taking out all of the retirement I had in a previous job and just kind of bottomed out. Gosh, it seems like she did not understand the risks of the medication she was taking. And my understanding from your reporting is that it seems like the awareness of these drugs is not as high as it could be. So what's the history of this? Where does this all begin? Well, this goes back a long time, actually. These drugs began to be used for a particular type of tumor in the 1980s, a tumor that's called a pituitary gland tumor, but relatively at low levels. But then in the 1990s, they begin to be used for Parkinson's disease. Parkinson's disease is the fastest growing neurological condition in the world. There are some 12 million sufferers and that number is thought to be about to double before 2050 because of aging populations. But this drug was this time seen as a miracle medication. A previous generation of drugs used for Parkinson's had side effects all of their own. They cause involuntary movements, which are highly embarrassing for sufferers of Parkinson's. So these dopamine agonists are able to tackle the shakes and tremors that sufferers of Parkinson's face, but they also don't cause some of the involuntary movements. So these drugs then widely begin to be used for Parkinson's and then other conditions like restless leg syndrome and in Charlene's case, depression. And what exactly is restless leg syndrome? Yeah, restless leg syndrome is a condition which causes an uncontrollable urge to move. Many sufferers of this condition describe awful sensations, particularly late at night, that can cause chronic sleeplessness and really affect people's quality of life. So to be clear, when the medications first were put on the market, no one it sounds was talking about these side effects. You didn't hear this from doctors, you didn't hear this from researchers? Well, exactly. These hadn't appeared to any great degree as far as we understand in clinical trials. So you've got a situation where patients aren't aware, prescribing doctors aren't aware and they don't appear in leaflets at all. But our investigation found out that doctors did begin to share stories about the crazy, wild experiences that their patients were having. Now, these side effects that led to huge debts, they led to the breakup of marriages, criminality and even in some cases, suicide. I see. So you've outlined a timeline for us in which these drugs really started to become popularized in the 1990s. Throughout the early 2000s, there's still no official report on the side effects, no warning that's being given to patients. But it appears there is some anecdotal evidence building that these drugs might not be safe for everyone. So when are these side effects, this anecdotal evidence, when does it actually first begin to be properly investigated? Well, academics in the early 90s begin to publish reports proving this link between these drugs and impulsive behaviors. And this is followed by clinical research by the pharmaceutical companies. So this is the early 2000s then? Yeah, this is the early to mid 2000s. There's a significant study that finds that one in six people on these drugs develop impulsive behaviors. Wow. Now, to kind of put that in perspective, health authorities here, they say that a side effect is very common if it affects one in 10 sufferers. So while not all side effects will be extreme or severe, some academics put the relationship even higher. They say one in three people are affected. Oh, wow. I mean, the staggering data to see in the side effects. And so once researchers detect that these side effects are indeed fairly common, once that is proven, why do the drugs stay on the market? I mean, presumably I understand they are helping patients, but there has got to be some sort of tension looking at the pros and cons in that dynamic. Well, these drugs can be life changing for many people, particularly we're told by Parkinson's sufferers for them. In the early stages of the condition. And regulators have always made these calculations that the benefits overall outweigh the risks. But what many people tell us, these people that have gone in touch with us that have experienced these side effects is that the complete scale of these side effects and the nature of them. Everyone needs to be aware of it. So warnings do appear in the mid to mid. And how so? How are the warnings disclosed to the public? They begin to appear in the leaflets, the packaging that you'll receive in the medication in that small font. It'll say that in that small font. Exactly. But what people say to us is that the warnings weren't sufficient enough. They hadn't been sufficiently warned to make the link between their newly developed and pulsed behaviors and the drugs that they were taking until it was far, far too late. So Charlene, in her story, she started taking these drugs 10 years ago. I find it hard to compute why if the research was done, you're saying in the early 2000s, why someone like Charlene in the year 2016 was not aware of the risks of the medication she was on. Unless that information was not being fully disclosed, right? You say that the risks were known, that they were beginning to be printed on leaflets. How do people continue then to take the drug and not know the side effects? Well, we've kept hearing the same complaints by people. One is that they weren't warned properly by their doctor. It wasn't taken seriously enough that there was a kind of like tittering or a kind of joke made about the sort of sexual side effects when actually it was a lot more serious for these people when they developed. Other people complained about the language of the warnings that they weren't clear enough. What do they say? Do you have an exact language description? Yeah, so around sexually impulsive behavior, this term hypersexuality that for a lot of people is quite hard to understand. What does that mean? Because isn't hypersexuality an actual disorder? Yeah, it's compulsive sexual urges. So anyone can behave impulsively, but when impulsive behavior is deemed as harmful, that's considered an impulse control disorder. And hypersexuality is one of these kinds. And in the warnings that appear on leaflets, they talk about sexually altered interest, increase in libido, generally harmful behavior. But the people that developed extreme cases of these side effects, they say that the way that these manifest is often in porn addiction, in use of sex workers. And they're saying that that's the sort of language that they think the warning should include. I mean, increased libido by itself doesn't sound particularly harmful. Well, and many men say that when they were told this in appointments in their 56s and 70s, they actually thought this might be a good thing. You know, when they're experiencing declining libidos themselves. But if the language had talked about, you know, porn addiction and partners, families would hear that language, they may be able to recognize these new behaviors when they emerge. But crucially, the other aspect of all this is that people say that some of these behaviors, sex addiction, gambling addiction, they can be really shameful. How do you tell your doctor in a brief appointment what you're going through? That's what stops a lot of people reporting this and getting into further and further problems. You've spoken and you're reporting to hundreds of people. Did any of them bring legal cases against the drug companies, against their medical providers as a result of the side effects they experienced? Yes, some have. They appear few and far between. So there are clinical negligence cases. That's where you say you weren't warned by your doctor. But this can be really hard to prove, right? So people say, how do you begin to evidence that your doctor didn't warn you about a side effect in an appointment that may have taken place, you know, a decade ago? Where there have been cases generally, they involve gambling. People that can say, look, I wasn't gambling before. You can see that through my bank statements. I begin taking these drugs and look, I've lost $100,000. But with other forms of impulsive behavior, like sexually impulsive behavior, where relationships have been ruined, families have been broken up, how do you evidence the harm in those cases? I imagine it's also difficult for the patients you've spoken to to weigh up how much agency they had, right? Because I do think, particularly when you talk about sexual behavior changes, some folks might be wondering, well, hey, is this just not on me? People do change their sexual behaviors over their life, and is that just not a part of it? Do they wonder? And do they struggle with how much agency they had? Yeah, that's a real theme here. So there's one particular case, which is quite striking in that regard. It involves a family who's previously really respected father stole more than $600,000 from vulnerable elderly clients. So his legal practice involved having control of the financial affairs of lots of local elderly people in his community. But extraordinarily, he was stealing this money and he was paying for sex workers with the money. And bizarrely, he was using it to pay for antiques. One of his great hobbies was antiques and he was spending huge amounts of money on antiques stealing from his clients. More than a dozen people that lost huge sums of money. This story took a really tragic turn when the lawyer was sent to prison. But interestingly, the sentencing, the judge said that while the drugs were responsible for this man's behavior, he still felt he must have been able to spot his behavior and he should have been able to warn someone and seek help from a doctor. That is a really interesting ethical question. Exactly. And it's very tricky territory, but I think as Charlene put it in one of the clips that we've played here, you've got this dopamine hit loop and it changes your judgment. Where does the personality begin and where does the medication end? I have to ask, what have drug companies said in response to your investigation? Yeah, so we've spoken to some of the manufacturers. They say that these drugs were extensively trialed, that they've been approved and continue to be approved by regulators around the world who make this benefit versus risk calculation and they say that the side effects are clearly stated. So you say that drug companies put these warnings on the medication. Is it your sense that there is more that can be done to make these drugs safer somehow? Well, there have been attempts over the years. So one American academic paper said that there should be a black box warning on these drugs. Like cigarettes. Exactly, like cigarettes. You know, that extreme in terms of the potential side effects. In Big Fund, you're saying. Exactly, in Big Fund. But the FDA, the US Drug Regulator said that it didn't feel that these side effects were sufficiently serious when compared with the benefits. And it said, it's extensively evaluated this and issued multiple updates. Okay. We want to know how Charlene's story ends. You know, she talked about bottoming out. How does she finally realize what was happening? Well, Charlene had taken out $50,000 from her retirement savings to fund her compulsive shopping. But soon that money dried up and she began shoplifting. And it's at this point, amidst all her other behavior, that she goes back to her psychiatrist. And I went to see her and said, you know, I think there's something wrong. Maybe I have bipolar disorder because that was what I thought. And I remember her whipping around and she had a rolling chair and she whipped around and said, it's the medication. She was 95% sure it was the medication and she had to get me off of that medication. But even then, no, I was not convinced. I thought there's there's no way it's the medication. How could the medication do all that in my head? And that's what I thought because that's how much I was unaware that something like that could happen. Gosh, does she go off the medication? Yeah, she does. But she says it's had a significant impact on her that her depression has gotten worse. And she cites the PTSD that she developed from the sexual encounters and the abuse that she suffered as a cause of that. It's had a devastating impact. I mean, I'm still trying to recover. It gets me choked up to even talk about it a lot of the time. I know there are many people out there who are on this drug and they have no idea of the damage that this can cause. So I think it's really important to get the word out there that there are other people who've been through this. And you can make it through and to that it doesn't have to keep happening. This doesn't have to happen to them. So, Noel, you started investigating these cases more than a year ago. And as we say, you've spoken with hundreds of people, hundreds of case studies. People are still, in fact, getting in touch with you. So I just want to ask Noel here at the end what you've learned. Well, it's been an overwhelming experience. These are really difficult stories to hear, but there's also something really satisfying. Whenever we publish one of these stories, we're flooded with people getting in touch. And what's been really striking is the number of cases from people in the U.S. where this seems a really underreported subject. We've been approached by lots of people in America who were sort of saying, I've never seen this written about before. Thank God, it wasn't just me that this happened to. But it feels to me that unless we can reduce the shame and the stigma that people suffer when they take these medications and experience these side effects, then they'll continue to be underreported. And unless people have true knowledge of the scale of these side effects and their consequences, how can they make truly informed decisions? It's a really, really interesting story. Noel, thanks so much for bringing your reporting to us. Thanks so much for having me. That was Noel Tithridge, an investigations correspondent at the BBC. And in response to Noel's investigation, the National Drug Safety Regulator in the UK has said it will begin reviewing the warning labels for several dopamine agonist medications. If you appreciated today's show and broadly the type of journalism that we bring you here on The Global Story, where we go in-depth every day on one big story at the intersection of where America and the world meet, then I've got a favor to ask. Could you take a moment to write a review or rate us wherever you listen? It really helps other people find us. And by the way, if you all have questions for us, we love hearing from listeners. We want to know what stories you're interested in hearing. You can email us at TheGlobalStory at BBC.com. Today's episode was produced by Viv Jones. It was edited by Brigid Harney and mixed by Travis Evans. Our video producer is Matt Pintis. Our senior news editor is China Collins. And I'm Asma Khalid. Thanks as always for spending some time with us, and we'll talk to you again tomorrow. Thank you.
