The Risks and Realities of Withdrawal

Brought to you by the Capital One Saver card. With Saver, you ear an unlimited three percent cashback on dining, entertainment, and at grocery stores. That's unlimited cashback on ordering takeout from home, or unlimited cashback on tickets to concerts and games. So grab a bite Grab a seatts and earn unlimited three percent cash backack with the Sver card Capital One. What's in your wallet? Terms apply. See capital onene. com for details From New York Times, I' Maelbar This is the Daily. In his latest public health crusade, Robert F. Kennedy Junror is asking why millions of Americans have been taking psychiatric drugs for far longer than ever intended I've been on Zooft since I was eight years old. I've continuously been on antibpressis twenty seven years. I've been on Luvox thirty years. I've been on them longer than I've not been on them process He's highlighting an open secret in medicine are much better at starting drug treatments than at stopping them. told to take it daily And I never questioned that. I don't really think I even asked or thought about how long I would be on it. I did not know that I was keeping on them for the rest of my life. And that patients who want to end their treatment are increasingly taking matters into their own hands All of a sudden, I felt so strongly that my brain was like, you need to get off this medication Ellen Barry takes us inside the growing movement T de prescribe It's Monday, june twenty second Ellen, nice to have you on the show. Thank you for having me. Let me just start by asking how you came to this topic of deprescribing. And for the uninitiated, can you just define that phrase Drescribing is the art and science of carefully tapering off a psychiatric medication or reducing a psychiatric medication I first heard the term really from patient groups. There has long been a sort of a subculture of people who talk to each other on the internet about being harmed by medication or feeling that their medication isn't working anymore who sort of compare notes on how to get off them And those communities, that's nothing new. They've been out there for decades, really since the early days of social media What's new is that this group largely of patients now has a seat at the table as federal health policy is developed. And that's because of RFK Junior. I want to thank President Trump for entrusting me to deliver on his promise to make America healthy again ident Kennedy made it clear during his confirmation hearings that one of the things he was looking at would be curbing the use of psychiatric medications in the US fififteen percent of American youth are now on Aderol or some other ADHD medication He talked specifically about antidepressants in those hearings that these medications were sort of dependence forming that we prescribe them too freely Even higher percentages are on SSRI's and benzOs. We're not just over medicating our children. We're overmedicating our entire population. And what he was talking about was the most widely used category of psychiatric medications SSRIs Listen, I know people including members of my family who've had a much worse time getting off of SSRIs than people that have getting off heroin. He said that SSRI antidepressants are harder to quit than heroin Is that true No, there's no evidence supporting that SSRIs are used by probably around thirty five million American adults These are selective serotonin reupttake inhibitors like Prozac or Zoaft or Lexipro. They're considered so It's safe to prescribe that overwhelmingly they're prescribed by family doctors or GPs rather than psychiatrists. And they're used for sort of an ever expanding array of different problems, not just for depression, but also for kinds of anxiety disorders, obsessive compulsive disorder Social anxiety, PTSD And that list, you know, has just continued to get longer Right. And here he is assailing and questioning the most widely used medication in basically all of mental health. Right, so after the confirmation hearings at the beginning of twenty twenty five, I think we were all watching closely to see what was he actually planning to do? And at the beginning of May, Secretary Kennedy appeared at a summit on overmedicalization that was held by the Maha Institute and Inner Compass Initiative, which is a support organization for people going off mental health medications The thesis of the entire day was overuse of SSRI's And at the end of that day, he announced a set of regulatory changes that all kind of aimed to encourage clinicians to help patients get off SSRIs S. So he's beginning to articulate a kind of federal regulatory vision for deprescription What specifically is he proposing He sent a dear colleague letter, which is direct communication to hospitals and doctors And the dear colleague Letter essentially said, don't default to using medication for depression and anxiety other modes of treatment. and we know that Lots of things are effective treatments for depression and anxiety psychotherapies Pably the number one alternate mode, but also sleep and exercise and diet and lots of other things. So that It's sort of common sense advice. It wasn't controversial. And just to be clear, he's not a doctor, RK Junior, but he's basically writing a letter to colleagues in the world of public health and the medical community And then he introduced a billing code that would allow Medicare and Medicaid providers be reimbursed for helping patients get off medications And why is that important It's important because It can be complicated and time consuming to help people quit a psychiatric medication Eespecially if they've been taking it for a long time or they're taking a complicated cocktail of four or five psychiatric medications, it takes a lot of time. Usually psychiatrists are reimburse for fifteen minute med checks every month. That's just not enough time So he's financially attempting to incentivize doctors to participate in de prescribing Yes. And another thing he set in motion is what's called a technical expert panel to develop guidelines for tapering off SSRIs. And this panel would create a new set of recommendations for healthcare providers on how best to do this Ellen, what's the reaction? to these proposals to this speech from The Secretary of Health and Human Services from the world of medical experts out there. I was really curious about that because it was noticeable that there were no medical organizations involved in putting together this sort of day of policy making around the use of SSRIs And when I reached out to them, I think there was a degree of alarm that they had somehow been excluded from this process, which sort of drives it you know, one of the central functions of psychiatry. And I had an opportunity to find out a little bit more about that because the American Psychiatric Association held its annual meeting ten days later That is extremely convenient journalistically. I'm going to assume you went. What did you find What I found was kind of twofold. Some people that I talked to were worried that this was just the first step in a much more ambitious plan on the side of Secretary Kennedy that would lead to a bigger discrediting of psychiatric treatments. So their fear is that whatever this is, it's just the beginning, maybe a side door into greater government what perhaps restrictions on these drugs So a lot of doctors who I interviewed in the hallways outside sessions at the APA said that SSRIs are the foundation of their practice that they are so safe that they've been using them for so many years and that they turn people's lives around, they make the difference between being able to get up in the morning and get dressed and get to work and not being able to do those things. So a lot of them were kind of passionate about saying what they have seen with patients And I think the worry is that people are going to be driven away from taking medications or that somehow their access will be restricted How many doctors at this conference were open to or even in agreement? RFK Junror is talking about here when it comes to deprescription Yes, so there was a second big takeaway that I had from this gathering, which is that a substantial number of doctorors there agreed that this is an area where we could do a lot better that is Training of psychiatrists focuses a great deal on putting people on medications, but much less on what it means to take them off and what a challenge it can be. And a number of people I interviewed expressed frustration over that. In one of the panels that I attended, a Dror Ronald Winschall from Columbia University School of Medicine, said that when he look back at his long career One of the things that he most regretted is not taking patients off medications until Later than he should have that is hesitating for various reasons, even when he thought that the medication was no longer needed or no longer effective It sounds like the second group of doctors you're talking to feel like RFK Ji. has identified a problem in their world that everyone should be more focused on Yeah. I think there was a lot of discussion of prescribing at this conference. There was a number of panels on de presrescribing different classes of medications. There was a new de prescribing handbook and it was selling a lot downstairs in the exhibition hall And in conversations with doctors, a number of them acknowledge that this is an area where we could do a lot better at supporting patients One thing we haven't talked about here is objective research that would clarify the questions We're discussing If I on the assumption now is that doctors aren't talking enough getting off these drugs. That's certainly the case RFK Jr.' making, some doctors are making it too. The implication is that people on these drugs for too long So what does the research tell us? about long term use of SSRIs The reality is that there isn't all that much research on that. Most of the clinical trials we have on these drugs are efficacy trials and they're shorter term, like six to eight week trials that are necessary for FDA approval There's some longer term work, but Very little that tells us what happens after three years or five years or ten years? And I think when SSRIs were first introduced in the nineteen eighties It wasn't anticipated that people would be taking them for years and years Clinical guidelines say once someone's symptoms are in remission, that you should discontinue the medication after nine, twelve months and just go back off But I think we see in reality that for a lot of people, that's just not happening So one study found that the median duration of treatment within SSRI is five years And for many, it's a lot longer than that That amazes me to be honest that we don't have much of any long term research on what has become for so many people long term treatments And if millions and millions of people are taking these prescription drugs for years and years and years, it's deeply surprising that we No, clinically What's the impact of that is Right kind of research just hasn't been a priority In the weeks since RFK Jr. introduced these ideas And once the medical health world began to absorb them, What has actually happened? to these proposals Inoming president of the APA is going to have a seat on one of the technical expert panels that will be developing guidelines in this area. There's also a psychiatrist from the American Society of Clinical Psychopharmacology. So there are going to be representatives of sort of major professional groups at the table Got it. So A lot of these medical experts decided that evenven if they were skeptical of RFK Jr.'s agenda here. that they wanted to be a part of You can't beat them join them, shape them They wanted a seat at the table I mean, as this deserscribing project gets off the ground, It's involving both establishment mainstream psychiatry and across the table, representatives of a totally different group that has been watching psychiatry critically from the outside for a long time And that includes patients who are saying How long are we supposed to be on these things And why haven't we been having these conversations with our doctors the whole time will do to you by the Capital One saver card With SVor, you earn unlimited three percent cashback on dining, entertainment, and at grocery stores. That's unlimited cashback on ordering takeout from home, or unlimited cashback on tickets to concerts and games. So grab a bite Grab a seatts and earn unlimited three percent cashback with the Sver card Capital One. What's in your wallet? Terms apply. See capital onene. com for details. I'm David Sanger I cover the White House and National seecurity at the New York Times, and I try to explain what decisions made in Washington mean for you wherever you live This is why the Times sends me to the Oval Office when the president is making a major decision or has me ride along on Air Force O on critical trips. And I talk to foreign leaders exploring why they're so often at odds with the United States We live in a world of misinformation and disinformation It's never been more important to have reliable sources of on the ground reporting If you want firsthand reporting on how U. S. policy affects the world, Consider subscribing to the New York Times Ellen, I wantna turn to this world of patients who have been eager for this deprescription conversation to reach the point that it now has where the federal government is broaching it and medical experts are now joining the conversation And in particular, I want to better understand the specific reasons that patients are giving for wanting to get off these medications and the specific experiences that lead them to that decision you know, whenever I write about this subject We really get inundated with personal stories and People have different reasons for wanting to get off a medication I so if I get off the antifressence, I can see what life is without this numbness. Sometimes they feel like their emotions have been kind of muffled. I wasn't having these anxious thoughts, but I also wasn't experiencing like as much h H good emotions either. There was like delayed sexual side effects. Sometimes they have side effects Sometimes they feel that the medication just isn't working anymore Maybe it's the classic thing. Oh, I feel great. I must not need my medication anymore. By then, I had been on the medication for about twenty five years. And I was just curious, what would my life be like without this? And I've heard from a lot of people who said, you know, I started taking this medication when I was a teenager. Maybe that's what I needed to get through that period, but now many years have passed and I've entered adulthood, not exactly knowing who I was. Right, who you would be without those drugs Exactly. It' FOo. It's like, what am I missing on? I want to live real life. I don't want live like white. I wantna live in color, you know Those intense emotions that can feel so uncomfortable, especially when you're a very young person, they're also part of your personality. And I hear from people who say, like, I wanna know who that person is Once these people you're hearing from decide that they're going to try to stop taking these medications How have they actually Tchnically been doing that and Who is guiding them? through that process I mean, I think some people with their doctors in getting off or tapering a medication and some people don't I went in and they were like, Hey, you want to refill your zoft? and I was like, yes, I guess if I still need to be on it and they were like, cool A lot of the people we hear from say this conversation about how to get off isn't happening with their doctor or if it is happening, it isn't satisfying Or for others, they just don't see their doctor often enough to get the kind of robust support that they need I to see all doctors, but I don't know how many doctors really grasp what it is beyond antideipressant. like You go in there and you're feeling depressed, they say, All right, they just raised the medication Some are better than others, but I never really Go to them to get off. I did that myself And in some cases, people just lose trust in their doctor if they think that the medication that they've been prescribed is making them worse I'll be honest, at this point, because I've been dismissed about everything else, I was like, I don't trust these people can make my own health decisions And those people have been talking to each other now for years and years with a lot of frustration towards organized medicine And for those folks who have been trying to do this essentially DIY What has been their playbook for lack of a better word? What does it look like I use Doror Google And I look at forums on Reddit and stuff like that. and people are like, If you do cold turkey, it can really destabilize you a little bit. So the kind of subculture around tapering and withdrawing from medications has been there since the early days of social media One example is a site called Surviving Aidepressants What you would find there is people exchanging their withdrawal protocols and it got incredibly technical People would be talking about reducing their dosage by a single bead within the capsule or liqueifying it or using pharmaceutical scales And over time, you that network has sort of matured into a real marketplace of support And that's presumably to avoid the side effects of abruptly taking yourself off of one of these drugs Even when people are very careful and very gradual What are the side effects of ending these treatments? The side effects that you most often hear about are Verttigo, nausea, or flu like symptoms Completely stop sleeping Insomnia Something that they call brain zaps, electricity in my head, which are like a twinge or a sense of a feeling of a sort of a shock like sensation in the brain. W It's like this kind of thing And there's someome portion of people who describe The process of withdrawal is really intolerable, like jumping out of their skin. and it is its own kind of debilitating crisis I would like watch a movie, I cried. I watched commercial and cried read a book anchram I was listening to the Beach Booy' Pet sounds album and just tears coing down my eyes It felt good for a while, but then it was like it was like going like having emotions that were like a Dipping faucet to like a fire hose It was too much But what doctors generally say is that for most people, these symptoms really only last for a few weeks. And then if after that, you're feeling dramatic mood changes you might be experiencing relapse Essentially, the conditions that may have prompted you to first go on these drugs Yes However severe these side effects are, They would seem to buttress the argument best version of de prescription is a medically supervised one where you're not trying to do it yourself and you're not determining dosages and tapering And where the same doctor who prescribed the drug is the one helping you get off of them and aware that you're trying to do it and helping you manage It could be a brain zap or a resumption of symptoms. This feels like something that should not be DIY That's certainly the view from within medicine that one of the reasons that you need supervision if you're doing something like this is just to guard against the possibility of a relapse And this would seem to make the case for the conversation RFK is pushing the medical world to h. Right. I think there is some acknowledgement that prescribers aren't putting the same amount of care and attention into landing the plane as taking off Well, Ellen here, I want to acknowledge that the conversation that RFK trying to have and that we're having here is not Theoretical for me anyway, and here I'm gonna shake my Lexipro. I've been on Lexipro as an anti anxiety medication for at least It was prescribed by a psychiatrist but then just became part of my relationship with my general practitioner. I just kind of get it renewed And I've not really been asked to think about how long I should be on it And now suddenly having this conversation with you is making me ask that Question, How long am I supposed to be on it? What would happen if I stopped taking it? Would all the white noise of anxiety that made me want to go on Llexapro would that return? Or ten years later, have I outgrown that? And I just don't know it because I've never tried to taper myself off this to find out I would be if I weren't M on Alexa Pro I mean, it's not a simple question I hear so many people asking that kind of question. like Is there some authentic self that I want to go back to, You know, what would life look like if I took this medication away? I just think that question is percolating And I feel like what's a little bit more complicated is if you think it works for you, you become sort of, I don't know, psychologically attached to them. and you think, if I quit this, am I going to spiral? Am I going to feel bad again And we know that the placebo effect is a huge part of the picture with these medications. And I think it's the same when you go off. they call it the nobo effect. which is if you think it's Essential to you, you may be just afraid of stopping. Afraid of finding out what that's like And that could sort of contribute to your feeling bad Michael In your case, What did you conclude about stopping Me, I don't know that I've ever gotten far enough along in the conversation with myself to stop. I just know that on the Occasions when I have failed to reliably take Lexa Pro, I have experienced some really crippling headaches which I needed a doctor to tell me were from not taking my Lexapro reliably. But there was no deeper conversation. There was no, is it time to think about whether you should be tapering? How long have you been on it was just an accepted fact in my conversation with a doctor that I was on it and then I'd probably still be on it for as long as I'm going to be on it And do you think that that conversation should have happened When you first went on I wonder now. but now I'm asking myself the question of are we all infantalizing ourselves in the face of medicine, should I be asking this question myself? Why should I be waiting for a doctor to ask it? It's getting a little existential now I mean, some people have multiple remissions. and what I hear from physicians is if you've had like three episodes of depression, then you probably are going to take an SSRI for indefinitely as a maintenance treatment And if it's fewer than three, then No, then you should try to get off if you want. But I don't think there's a lot of energy around having that conversation. Right I mean We're talking about dep prescription here because that's the conversation that RFK Jr. and those around him want us to be having 's also a possibility that People are going to hear this conversation And instead of just deprescription, they're going to hear Maybe I shouldn't ever get a prescription. and I wonder if that's a risk that RFK Jr. and the medical experts who are now joining him in this conversation are thinking about I mean, because I cover psychiatry and mental health, I have been doing interviews all over the country about people's use of this kind of medication. and I'll tell you that like they're reaching parts of society that just wouldn't have gotten any kind of mental health care in the past. So I remember talking to I think he was an autoomechanic and I was doing interviews in a school parking lot. and he said, you know, like my father was an angry drunk and because I take an antidepressant, I know I'm not going to go that way. And there're groups within our society that are only now for the first time getting access to a treatment for depression or a treatment for anxiety I mean, I think if you look at the numbers, white people take antidepressants at a rate that is twice as high as any other racial category and like five times as high as Asian people. So there's just a huge discrepancy Some groups take these a lot, some groups really don't have much access In other words, because of the demographics of who takes these mental health drugs There are plenty of people perhaps could benefit from them who have never been introduced to them or are just starting culturally to accept the idea that they can and will be on them And the over prescription deprescription conversation isn't necessarily the right one for them to be having right I think that's right. I mean, it may be that there is no one message that is appropriate for our entire society. so I think RFK Jror, the Secretary has to be very careful about enncouraging this conversation about stopping medication when it's appropriate without driving people away from the idea of treatment completely Right, It's one thing to have a conversation about de prescription It's another to intentionally or not stigmatize ever getting a prescription Yeah, I think both of these conversations need to happen How to access treatment that people really desperately need and also How much is enough and how to stop Thank you very much. We appreciate it. Thank you. We' do a b This podcast is supported by the Capital onene Venture X card. Venture X offers the premium benefits you expect, like a three hundred dollars annual Capital O travel credit for less than you expect. Elevate your earn with unlimited double miles on every purchase, brringing you one step closer to your next rem destination. Plus, enjoy access to over one thousand airport lounges worldwide. The Capital One Venture X card, What's in your wallet? Terms apply. Lounge access is subject to change. See capital onene. com for details