The Global Story: The medications that can trigger sex and gambling addictions

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1:07Hey 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 U.S. 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.

1:50It'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.

2:19Noel Titheradge: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.

3:03I'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?

3:27Well, 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 this 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.

4:04he 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, you 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 agonists. 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.

4:47Now, the way they work is they boost dopamine activity in the brain. So dopamine's 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 instant gratification. And it's thought that these drugs can overstimulate these feelings of motivation and reward. So just to be clear, you've been investigating this, Noel, for is it more than a year now?

5:26and 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 cost 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.

6:04You spoke with a woman by the name of Charlene, who lives in the US. Can you tell us a little bit about her? Yeah, so Charlene's 52. She's from Massachusetts.

6:15Noel Titheradge: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 was prescribed alongside her antidepressant. So Charlene starts taking one of those dopamine agonists.

6:58And 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.

7:28Noel Titheradge: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.

8:05Noel Titheradge:I should provide a little bit of context. Next, 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.

8:48Noel Titheradge: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. Like there was this drive that you had to do this.

9:24So for Charlene, this had consequences. She'd been in a stable relationship for six years. is 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.

9:54Noel Titheradge: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.

10:43Noel Titheradge: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, Noel, 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.

11:32She also developed other forms of impulsive behavior, which, again, had significant consequences for her.

11:39Noel Titheradge: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.

12:31And 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. You know, these drugs began to be used for a particular type of tumour in the 1980s, a tumour that's called a pituitary gland tumour, but relatively at low levels. But then in the 1990s, they begin to be used for Parkinson's disease. You know, 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 ageing populations.

13:12But 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.

13:54Many 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.

14:34These 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 noughties begin to publish reports proving this link between these drugs and impulsive behaviours.

15:23And 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. 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, that's staggering data to see on the side effects.

16:01And 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 gotten 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.

16:47So warnings do appear in the mid to late. And how so? How are the warnings disclosed to the public? So 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 impulsive 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 risk of the medication she was on, unless that information was not being fully disclosed.

17:39You 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?

18:14Do you have an exact language description for this? Yeah. So around sexually impulsive behavior, this term hypersexuality that for a lot of people is quite hard to understand. And what does that mean? Because isn't hypersexuality an actual disorder? Yeah, it's compulsive sexual urges. So, you know, 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. I see. And in the warnings that appear on leaflets, they talk about sexually altered interest, increase in libido, generally harmful behaviour.

18:49But the people that developed extreme cases of these side effects, they say that the way 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 50s 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 recognise these new behaviours when they emerge.

19:29but 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 Music Music Music Music

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23:00Offers may vary. Visit Julesosco.com for more details. 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 a decade ago, Where there have been cases, generally they involve gambling.

23:42People 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.

24:17And 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 whose 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.