Balancing Access and Overmedication

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I've been on them longer than I've not been on them In the process, he's highlighting an open secret in medicine are much better at starting drug treatments than at stopping them. 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 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 todayod Ellen Barry takes us inside the growing movement D 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 depcribing. 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 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 ese medications were sort of dependence forming that we prescribe them too freely Even higher percentages are on SSRIs and benz's. We're not just overmedicating 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 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 re uppttake inhibitors like Prozac or Zoft or Lexipro. 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 SSRIs 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 Hm. 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 is sort of common sense advice. It wasn't controversial. And just to be clear, he's not a doctor, RFK jior, but he's basically writing a letter to colloeagues 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. Especially 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 des 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 Yeah, 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 with what RFK Jror 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 Doctors 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 Winchall 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 Junior 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 derescribing different classes of medications. There was a new derescribing handbook and it was selling A lot downstairs in the exhibition hall. And in conversations with doctors, a number of them acknowledgeed 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 Ell on the assumption now is that doctors aren't talking enough, getting off these drugs. That's certainly the case RFK Jr. is 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 the impact of that is Right kind of research just hasn't been a priority In the weeks since RFK Jior introduced these ideas And once the medical health world began to absorb them, What has actually happened? to these proposals incoming 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 it If you can't beat them, join them, shape them They wanted a seat at the table I mean, as this describing 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 Why haven't we been having these conversations with our doctors the whole time? We often think of travel as a challenge, but what if Asia felt easier In Taiwan, safety is a way of life, and hospitality is the local language From vibrant night markets and cities that glow after midnight to centuries old temples, world class dining, and quiet mornings by the mountains and sea Life here feels deeply human There is a warmth in Taiwan that makes a stranger feel welcome. Taiwan Waves of wonder Taiwan clloser than you think place that stays with you This podcast is supported by UJA Federation of New York. In a polarized world, it's easy to feel stuck ing people That's something we can all agree on. At UJA, that means tackling the economic pressures facing New Yorkers, making sure Holocaust survivors aren't forgotten, and keeping Jewish communities safe and thriving It's focused, it's urgent, and it works. This is our New York. When you support UJA, you do what matters most, where it's needed most. Start today Find out how you can help at UJa. org. Cancer is loud when it enters our lives. We built the Jack and Cheryl Morris Cancer Center, so cancer doesn't get the last word The Jack and Cheryl Mooris Cancer Center, New Jersey's only fre standing cancer hospital to Silence canancer. RWJ Barnabas Health and Rutgers Cancer Institute, the state's only NCI designated comprehensive cancer center RwJbh. org slash Morris Cancer Center Ellen, I want to turn to this world of patients who have been eager for this derescription 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 So I so if I get off the anineresence, 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 high 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 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, Wh you would be without those drugs Exactly It's FOMo. It's like, what am I missing out on? I wantan to live in real life. I don't want to live in black and white, I want tona 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 work 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 Zo offs? 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 O 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 anidepressant. like if You go in there and you're feeling depressed, they say, all right, they just raised the medication out of than others, but I never really So to them to get off it. 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, I at this point, because I've been dismissed about everything else. I was like, I don't trust these people, I 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 is essentially DIY, What has been their playbook for lack of a better word? What does it look like I use Dr. 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 Antidepressants. 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 liquefifying it or using pharmaceutical scales And over time, you know, 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 erttigo, 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. 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 to watch a moie I cried. I watched commercial and cried Wead aook anchrant I was listening to the Beach Booyys Pet sounds album and just tears coming 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 Dripping faucet to like a fire hose too much. 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 a 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 Drescription 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 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 Right. I think there is some acknowledgement that Pcribers 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 A decade, 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 Lexopro? would that return? orr 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 who I would be if I weren't M on Lexipro 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 gonna take an SSRI for indefinitely as a maintenance treatment. And if it's fewer than three, 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 There's also a possibility that People are going to hear this conversation And instead of just dep presrescription, 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' 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 now. Yeah, I think that's right. I mean, it may be that there is no one message that is appropriate for our entire society. I think RFK Jror, the seecretary 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 deep 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 dra a b