ADHD Sufferers Fear An Adderall Shortage

Guests

Caroline Smith, has an Adderall prescription
Richard Knox, health correspondent, NPR
Dr. James McGough, professor of psychiatry, UCLA School of Medicine

Up to 15 million children and adults are thought to have attention deficit hyperactivity disorder (ADHD). Many of them take Adderall to treat it. In recent weeks, some patients have complained they can't find the drug in pharmacies and fear it's the latest prescription medication to face a shortage.

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NEAL CONAN, HOST:

This is TALK OF THE NATION. I'm Neal Conan in Washington. Nearly 15 million Americans live with attention deficit hyperactivity disorder, or ADHD, and many of them are prescribed an amphetamine called Adderall. In some parts of the country, though, Adderall can be hard to find. It's among the prescription drugs to experience a shortage, and patients can either search high and low for the drug or try to find an alternative.

The Drug Enforcement Administration thinks the problem is in distribution, rather than a real shortage. Manufacturers say regulations aren't keeping up with demand. And while prescription users may have trouble finding Adderall at the local pharmacy, the drug is widely available illegally, especially in high schools and in colleges.

If you take Adderall, what's been your experience? Our phone number: 800-989-8255. Email us: talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Later in the program, an argument for cash instead of cranberry sauce at the annual food drive, but first Adderall, and we begin with Caroline Smith. She's been prescribed Adderall since she was a child and joins us now on the phone from Chicago. Nice to have you with us today. Caroline, are you there?

CAROLINE SMITH: I am.

CONAN: Hi, nice to have you with us.

SMITH: Thank you.

CONAN: I wonder: Is Adderall generally in stock there at your local pharmacy?

SMITH: Generally yes, but lately it's been impossible to find. I actually used to be prescribed it but no longer am because of this shortage and because of the price of Adderall.

CONAN: The price of Adderall.

SMITH: Yes, it's about $340 without insurance, and most insurance plans for students don't cover a pre-existing medical condition. So they have to pay for the entire prescription out-of-pocket, which was my case.

CONAN: I see.

SMITH: So I had to switch to a cheaper brand, Vyvanse.

CONAN: Okay, and so you're taking that now?

SMITH: Yes, I am. I have been for months.

CONAN: And what's the difference?

SMITH: Well, there are a lot more difficult side effects than Adderall. I had been taking Adderall for over a decade and found it a very consistent way of - my doctor had been regulating that for me, and I found a good balance that had been working for me for years.

But taking Vyvanse, it's painful on your stomach. It gives me really bad headaches. The time release isn't - is different than Adderall is. So it affects my sleep a lot differently. It's very difficult for me to get sleep on Vyvanse. And it's not nearly as effective. I would say it's about 40 percent as effective as Adderall.

CONAN: So if you could find it, and if you could afford it, you'd happily go back.

SMITH: No questions asked. It's one of the most valuable things that I can get right now because it's so in demand. It's hard to get, and it's so expensive.

CONAN: What was your - can you describe what it was like to go into the pharmacy and find it wasn't there?

SMITH: Well, I have siblings that have been dealing with the same problem. Now that I'm prescribed the different drug, Vyvanse, because of this, but my siblings, who have been dealing with this shortage currently, I've literally had to help one of them drive all over the city. We went to eight different pharmacies just a few days ago without able to find the prescription that they needed.

CONAN: ADHD...

SMITH: So it's incredibly frustrating, and right now is right before finals. My brother is in college, and he just knows that he's out of luck. And that's one of the most frustrating feelings that there is, knowing that there's something that's there that helps you perform at the level that you need in order to function regularly, and you can't get access to that.

CONAN: And we should note that ADHD can run in families. So it's not that unusual that you and your siblings would suffer from the same thing.

SMITH: Absolutely. Yes, it does run in my family.

CONAN: So as you look ahead, this is something that does not go away. This is something you're going to have to be dealing with for your whole life.

SMITH: Yes, it is. I've had to learn how to compensate for it, and I have. My case is odd because I've - well, we went through a lot of testing when we first were prescribed, and then the problem is that I wasn't hyperactive when I was younger. There are different ways that either you can have hyper - you're either hyperactive, or you're not.

My problem was primarily with focus and with reading because I'm also dyslexic. So the inability to get Adderall never showed up in my grades because I would just spend hours and hours and hours studying, which I started doing when I was in grade school. But not able to have access to it as a grad student is terrifying. It's terrifying. I know it's going to affect my ability to do well in school.

CONAN: You mentioned some of the side effects of the drug you're taking now. Was it difficult in other ways to switch?

SMITH: Gosh, no, there really isn't an alternative. There are other - there are older versions of Adderall, like Ritalin and Concerta, but those are not nearly as effective, and those - the level of amphetamine is different. It has more of a side effect that makes you feel like your metabolism is up, that you're all over the place.

But Adderall is much more controlled than either of those two drugs, and it's able to last an eight-hour period as opposed to a four-hour period or a six-hour period. So it makes more sense that it lasts throughout your day, and you're able to have more of a consistent prescription.

But it's the one that has worked the best for me and that - where I have the least amount of side effects. And there - I don't know of doctors that prescribe a generic version of Adderall or one that's less expensive. But still, anytime just to find a doctor to go through another round of testing or have to find another doctor to get that prescription for you costs you at least another $100 or so.

CONAN: Well, Caroline Smith, we wish you and your siblings the best of luck.

SMITH: Thank you. Thank you.

CONAN: Appreciate it. NPR health correspondent Richard Knox reported on Adderall drug shortages recently for NPR's MORNING EDITION and joins us now from his office in Boston. Richard, nice to have you back.

RICHARD KNOX, BYLINE: Hi, thanks, Neal.

CONAN: And Caroline's story, how common is it?

KNOX: Well, you hear an awful lot of these kinds of stories. I didn't have any trouble finding people who reported that kind of wild goose chase that people have been going on - going through trying to get their prescriptions filled for this disorder.

I think we should point out that it's not just Adderall. Adderall is the sort of - it's the leader in the drugs for this, for ADD and ADHD. ADD being attention deficit disorder without hyperactivity, which is what Caroline seems to have. The other drug that's in shortage is methylphenidate, which is Ritalin. It's a different type of drug. It's not an amphetamine, and it was declared last week by the FDA to be in shortage, too.

It's been going on since last spring but in a kind of spotty basis. It seems to be getting worse this fall, as far as we can tell. But it's all pretty anecdotal information.

CONAN: Well, I was interested in your piece to hear the DEA say there is no shortage.

KNOX: Yes, I was - I was surprised, too, because the FDA says there is. And, you know, they have a website on the FDA that lists all the drugs in shortage, and there are a lot of them these days. And I've - one thing that caused me to do the story is I found that methylphenidate, the Ritalin-type drugs, popped up on that list a week or two ago.

And then I was sort of poking around and found that the Adderall thing was more long-standing. The DEA gets involved. It's an arm of the Justice Department, the Drug Enforcement Administration. Its job is to make sure, to the extent you can, that drugs don't get diverted into illicit use, drugs of abuse or potential abuse like amphetamines, the way these are.

And so it, every year, sets a ceiling on how much on the raw material, the active ingredient for a whole bunch of drugs, including these, can be made. So it's an overall aggregate amount of raw material that the DEA regulates. And they say that there should be plenty out there.

They don't monitor, you know, how much is actually used, although they look at the number of prescriptions being written, and they adjust it once a year, once again if need be, and then they allocate the quotas to individual companies, and companies come forward regularly and say we need more, and then the DEA will grant it or not.

CONAN: All right, let's see if we can get another caller in on the conversation. Joe's(ph) with us from Norman, Oklahoma.

JOE: Hi.

CONAN: Hi, Joe.

JOE: How are you?

CONAN: Good, thanks.

JOE: I wanted to make a comment. I'm a student here at the university and have been - was prescribed Adderall by my psychiatrist over a year and a half ago and have been taking it and have experienced the numerous side effects from it, in addition to those benefits that the drug creates, produces.

CONAN: And lately have you found it difficult to find?

JOE: I have, actually, for the last about three months it's been almost impossible to get my prescription filled. And I have to - my - I see a doctor that's in between the town that I'm in and a major city north. So the prescription that I have still sits with the pharmacy because it's impossible to find, and I find myself having to go to other people that I know that have it and having to purchase it from them in order to use the medication.

CONAN: And when you say other people, do you mean other patients who get a prescription, or dealers?

JOE: Well, I would say patients, people that I know who are also - also take the drug. It's widely prescribed. One comment that I would say about the drug is that I would venture to say it's probably over-prescribed, used to treat many symptoms of multiple conditions, whether that be ADHD, ADD, inability to focus, whatever a patient brings to a psychiatrist or anybody in charge of prescribing these prescription amphetamine medications, using them to treat a multitude of things, often resulting in side effects such as weight loss or inability to sleep, creating the ability to work extremely long hours and bringing on a multitude of other side effects that, if not really controlled, could really be detrimental to your health.

CONAN: And Richard Knox, we do hear of Adderall being sometimes used for weight control, off-label, but that's what some people do.

KNOX: Oh, no question about it and not just - you know, weight control is one of them, but probably I would guess - again anecdotally - the most common off-label use or illicit use, misuse some people call it, would be for, you know, kids who are trying to stay up, you know, pull all-nighters and take exams and sharpen their performance.

And, you know, it works. These are stimulants, and so they do rev you up and make you more wakeful. There's no question about it. They have a different kind of effect in people who have ADD or ADHD. It's more of a focusing effect.

CONAN: Joe, thanks very much for the call, we wish you good luck and understand how difficult it is. We're talking about the shortages of Adderall, one of the common treatments for ADHD and ADD. If you take Adderall, what's been your experience? Give us a call, 800-989-8255. Email us, talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION, from NPR News.

(SOUNDBITE OF MUSIC)

CONAN: This is TALK OF THE NATION, from NPR News. I'm Neal Conan. We talked last month with Richard Knox about the growing problem of prescription drug shortages. More than 200 medications - cancer drugs, antibiotics, anesthetics and others - are in low supply, or have run out entirely.

Recently, though, Richard reported on shortages of Adderall, a popular drug to treat ADHD in adults and children. One advocate warned there's more than a poor grade at school at stake: Teen pregnancy, dropping out of school, drug abuse are all possible with reduced impulse control. And young adults with ADHD have three times more car accidents.

NPR health correspondent Richard Knox is back with us. If you take Adderall, what's been your experience? Our phone number is 800-989-8255. Email us: talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Joining us now, Dr. James McGough. He's professor of psychiatry at UCLA School of Medicine and directs the UCLA clinical programs in attention deficit hyperactivity disorder, and joins us now from his home in Los Angeles. Good of you to be with us today.

JAMES MCGOUGH: Good afternoon.

CONAN: And as we said, some argue there's no really a shortage. Many say they can't find their medication. To what do you attribute that?

MCGOUGH: Well, I think there's two things. Richard was exactly right. And again, there are shortages across the board right now that many people are struggling with. But the DEA does set quotas every year in terms of the stimulants. This happened a couple years ago, as well, towards the end of the year.

There's an issue, though, that hasn't been mentioned, that actually, what's curious here is it's the generic drugs where we're having difficulties. Vyvanse is actually an on-label brand-name drug made by the same manufacturer of Adderall, but Adderall is now supposedly generic.

Its prices haven't dropped, but I've actually heard from some companies that there isn't enough profit in the generics because the cost is supposed to be lower for them to actually be invested in making it. So that's an aspect of this problem that isn't being discussed too much, but it is definitely part of it.

CONAN: Help us understand this debate from the medical standpoint. Do you think the drug manufacturers and the DEA have valid points?

MCGOUGH: I think the DEA works hard to do its job. I think they can be a little hard-nosed and black-and-white about this. I think they are more suspicious of these drugs and the potential for abuse than is probably warranted. But, you know, as you pointed out earlier, the DEA says there's sufficient supply. The FDA says, clearly, there isn't.

So I think they do tend to be a little bit rigid in their approach to this. But again, I think they are trying to do their job.

CONAN: It can be misused or abused. Kids do get hooked on it.

MCGOUGH: The - most of what you hear about is what we term misuse, which is defined, really, as using it for something or by someone other than whom - for whom it is prescribed.

Most of that is for what Richard alluded to in terms of performance enhancement: Somebody wants to stay up to study for a test or write a paper, something like that. Much less of this is actually used to - getting high. One study actually suggested about 35 percent - 15 to 35 percent of college students, at least once, were involved in misusing one of these medications.

But there are actually lots of other ways people stay up all night, as well, energy drinks, et cetera. So I think the big picture is this, to my view, is not really a huge public health concern. One really needs to weigh the very real problems that ADHD brings and the suffering that those individuals have with, you know, these potential downsides of the medicine.

And also, most of the medicine, such as the longer-acting ones - which I think Cynthia was using earlier. And these certainly aren't good medicines to abuse to get high. But they are useful to, you know, if you need to focus better to study.

CONAN: Let's see if we can get another caller in on the conversation. We'll go to Miguel, Miguel with us in St. Louis.

MIGUEL: Hi. I first want to thank you for bringing attention to this, just, important issue. I have been taking Adderall for a number of years now. I'm a Ph.D. candidate at Washington University. And one of the things that I think that a lot of people don't understand about attention deficit disorder is that in many cases, certainly in mine, the condition can be quite, well, frankly, disabling at times.

And so when I encounter these shortages and find myself, you know, wondering if I'm going to be able to get my medicine or not, it - frankly, it can be frightening, because I know how I am, frankly, unable to function without it.

CONAN: And when you're finding it difficult to find - and, of course, that increases anxiety levels, which doesn't help - is it impossible to find?

MIGUEL: There have been times where I've, you know, gone to every pharmacy within, you know, a seven-mile radius and have been unable to find it and have actually run out, which, of course - and I'm on a very high dosage, and when I run out, of course, that has severe effects on mood, as well.

And so, I mean - and in terms of a public health concern, certainly the - just the shortage of Adderall in particular is - it's a huge concern. I would imagine - I mean, it's the only medication that works for me, and I've been through all of them, unfortunately.

CONAN: Well, Miguel, we wish you good luck, and do you have exams coming up? Well, Ph.D. candidate, I'm not sure exams is quite what you're involved in, writing...

MIGUEL: Trying to teach classes without being able to focus, that's always fun.

(SOUNDBITE OF LAUGHTER)

CONAN: I bet. Trying to take them the same way is no fun, either, but a little bit less stressful. Good luck to you.

MIGUEL: Thank you.

CONAN: Dr. McGough, are you hearing complaints like Miguel's?

MCGOUGH: Oh, absolutely. I've heard just last week, you know, probably half-a-dozen people are having problems. People can still find it here in Los Angeles, but it's a lot of work. I'm hopeful as the new year rolls around that, you know, supplies will open up again. But it is definitely an issue.

CONAN: Richard Knox, I wanted to ask you about the point that Dr. McGough made about the, well, supposedly generic version. That's supposed to be more widely available and cheaper.

KNOX: Yes, I think there's some strange things going on here that I can't claim to understand, but sort of behind the scenes and in a bit of a black box, to mix metaphors. But the DEA, when you talk to them about it, and they insist that there really isn't a shortage, that there should be plenty of the raw material out there for manufacturers to turn into pills and capsules, they also say that there are business decisions, as they put it, that are involved in creating these, you know, apparent or perceived shortages at the consumer level.

And what that apparently means - although they don't spell it out - is that there are - there's a lot of jockeying for market share that goes on among the companies that serve this lucrative market. And there's some lawsuits. A couple of the generic companies that sell Adderall extended release - which is a very popular form because it, you know, you only - don't have to take it as often, and it lasts longer - a couple of these companies are suing the large company that supplies all of the Adderall material, Adderall extended release material.

And they allege that the supplier is sort of holding back on supplies, maybe to the disadvantage of its competitors, and some allege that the holdback is partly to drive patients and doctors to their brand-name Adderall extended release and to the other drug, which Caroline mentioned, Vyvanse, which is a more expensive - despite what she says, it is intrinsically more expensive, newer alternative for this disease.

And I can't - you know, I can't really assess those charges, but there's a lot of finger-pointing going on that may not be easy to find out about.

CONAN: And since we can't really find out about it, Dr. McGough, it's just going to drive people crazy.

MCGOUGH: Well, yeah, maybe we weren't ready to step into that. But I think it is - you know, Adderall is a great drug. Vyvanse is a great drug, too. We were looking forward to the Adderall going generic and becoming cheaper because some people who don't have insurance, you know, can't afford the more expensive medicines.

But that certainly hasn't happened. The price certainly has not dropped, but nonetheless, we're still having shortages.

CONAN: And please don't misunderstand: I was using crazy in the intense frustration meaning of the word, not in the misstatement of the word. Anyway, let's get Kevin on the line, Kevin with us from Dearborn in Michigan.

KEVIN: Hi. Can you hear me?

CONAN: Yeah, you're on the air. Go ahead, please.

KEVIN: Okay, yeah. I've been taking Adderall since I was 12 years old - or, excuse me, since I was 15 years old. I'm 27 now. I take the - I don't have any insurance. I have a teaching certificate, but I can only find work as a substitute right now. So I don't have any insurance. I usually get my prescriptions fulfilled at a hospital pharmacy. And up until a little while ago, it was only, you know, 30 bucks.

And then a few weeks - or like two months ago, all of a sudden, it shot up to 65 bucks. And then the next month, last month, I couldn't even get the actual dose that I needed. So I had to go back to my doctor, and I had to - first I had to call into the pharmacy to see, well, what kind of - do you have the 10 milligram tablets or the 20 milligram tablets? What tablets do you have?

And I finally found a place that, you know, after calling 10 or 11 pharmacies, I finally found one place that had the 10 milligrams - where I normally take 20 - that had them. And so I had to call my doctor and run over there and hope that I could get there, to the doctor, and they could write me the prescription, because they can't call Adderall in because it's a controlled substance. And I could get the prescription back to them.

And even then, when I did get - even when I did get it filled, it was 150 bucks. So I was paying five times what I was originally paying. And this month, the only other option probably is going to be just the extended release. And when I - to get my prescription for the extended release filled instead of the generic, it's going to - it would cost $300. And that's like a third of what I make in a month.

And so it's either - and, you know, if it - it comes down to being able to eat, to being able to add Adderall, I don't know that I wouldn't use the Adderall because it's like impossible to function. I mean, I would, you know, just, you know, cut my food down to, you know, ramen and maybe peanut butter sandwiches every day. But, you know, it's just that much that I need it to function. And I've been on it, you know, half my life almost. And it's just, you know, and I can't - I feel like I can't wake up in the morning when I don't have it. And I feel like, you know, like - it's like I'm not even the same person. It's just really, it's really difficult, and I don't know.

CONAN: Let me if I can just - let me see if I could just follow up with Dr. McGough. There are a lot of anxious people out there, worried that this drug that they've relied on for so long is suddenly becoming less and less available for different reasons. Again, maybe in the new year it will come back, but is this going to be systemic, do you think?

MCGOUGH: Well, I think, you know, there are real concerns. And honestly, I think it goes beyond the DEA. I think it ties in a lot to our whole health care debate as it is. You know, companies that makes drugs are, you know, in business to make profits. The profit for Adderall (unintelligible) is going to go away. And it's actually a great drug. It works great. It should be coming cheaper, but instead, it's just disappearing.

CONAN: And, Richard Knox, disappearing yet it does seem to be available to those students who want to take some for crash for an all-nighter.

KNOX: Yeah. I think that - it's not clear to me to what degree, I mean, what exactly is out there. The instant - not instant, but the immediate relief Adderall may be in greater supply than the extended release Adderall, I'm not sure about that. And so we'd have to know more about just what is available on the black market or, you know, from friends or whatever, before we could sort out just, you know, what the nature of the shortage is.

CONAN: Here's an email from Lee: My college-age daughter may be addicted to Adderall. She's now prescribed Xanax to take the edge off. She's been on these for over a year. Her personality is different now, and I'm worried. Are doctors paying attention to potential addiction? Or do they just keep prescribing if the patient wants it? Dr. McGough?

MCGOUGH: So first - one must acknowledge there's a risk for addiction and substance abuse among people with ADHD, treated or not. People do not generally get addicted to Adderall. It sounds to me like that person has a particular issue, and I think that really ought to be discussed with her own physician. And if they're not satisfied, they should find a different physician. That's not a typical story at all.

CONAN: And do you find, as one caller suggested earlier, that Adderall is over-prescribed?

MCGOUGH: I think - what I sense in his discussion was he's frustrated he can't get it. He has ADHD, but other people maybe don't have that diagnosis are getting it and using up the supply. You know, people should keep aware. Physicians can prescribe an approved medicine for a range of things that go beyond what it's officially intended for. So he's right, to the extent that I think physicians may give it to someone who doesn't quite meet the criteria for ADHD, but that's actually OK. If you look generally across the country, though, the numbers of individuals who get the prescriptions remain less than the numbers of individuals who we know have ADHD. So I think the argument that it's overprescribed really doesn't hold up.

CONAN: And do you find that it's used, very much, for people - weight control, that sort of thing?

MCGOUGH: Actually, Adderall is really designed to be a weight control drug. It didn't work very well. It stops having that effect after a couple of months. And the patent was going to go dead, and then the company picked it up and decided to market it for ADHD. If it really worked well for weight control, it would still be marketed for that.

CONAN: Dr. James McGough, professor of psychiatry at UCLA's School of Medicine. Also with us, NPR health correspondent Richard Knox. You're listening to TALK OF THE NATION from NPR News. And let's see if we can go next to - this is Steve, Steve with us from South Bend.

STEVE: I am.

CONAN: Go ahead, please. You're on the air.

STEVE: OK. Well, I found that when I was diagnosed with this later in life, I - at age 45. I'm 55 now. There was extensive testing - and I - it was very expensive psychiatrist - that going through the process. In fact, it was two different medical labs that were corresponding with each other. And I went through a variety of medications before they ended up prescribing Adderall for me. And Adderall at the time - they initially took was covered by my insurance. I would never been able to afford the doctors that actually prescribed it for me. And I found that I didn't really need it as often, but I did need it every work day. And as a result, when it became generic, I quickly got on the generic and found that I had no problem with it.

I mean, I've never been able to not sleep with it, and it's never been a weight issue. I have never lost weight from it, that's for sure. I'm way, way too overweight and probably pre-diabetic right now. But the fact is, that as - since March of last year, and this is when I lost my job, I hadn't been able to get Adderall. And - or my - I was getting amphetamine sulfate. And it was simply unavailable. Well, initially, it didn't bother me and everything, and I waited with my family's pharmacy for three months before they got it. But in the meantime, I did lose my job because of poor job performance. And, you know, and, you know, they weren't interested in these kind of situations, you know, at my work, you know, in was simply, you know, I wasn't doing it. So...

CONAN: I don't mean to cut you off. I just wanted - we're just running out of time, and I wanted to give Dr. McGough a chance to respond. These are some of the real consequences: losing jobs, getting bad grades, as we mentioned, also driving problems.

MCGOUGH: Even among college educated folks with ADHD, they make about $40,000 less a year than similarly educated folks without ADHD. This is a very real condition based in the brain, and it has real consequences.

CONAN: Dr. McGough, thanks very much for your time today. We appreciate it.

MCGOUGH: Thank you.

CONAN: James McGough, a psychiatrist and professor at UCLA School of Medicine. He also directs the UCLA clinical programs in attention deficit hyperactivity disorder. He joined us by phone from his office in Los Angeles. Richard Knox with us from his office in Boston. Richard, always good to have you with us.

KNOX: Yeah. Thank you, Neal.

CONAN: Richard Knox is NPR's health correspondent. Coming up next, we're going to be talking about an argument that it's time to can the holiday food drive. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

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