ADHD and medications: A guide to navigating pharmacies, getting your meds on time, and insurance

(Editor’s note: This piece was posted on Reddit’s ADHD subreddit, described as “A place where people with ADHD and their loved ones can interact with each other exchanging stories, struggles, and non-medication strategies.” I noticed it there and asked the author if we could post over here, and he gave us the OK to use it with his name. He’s a certified pharmacy technician in the Western United States.)

By LEVI SILVERSTEIN

This post really only applies to the US. I don’t know anything about other countries and their pharmacies and insurance systems. Sorry folks.

Hey Everyone! As someone who struggles with attention deficit hyperactivity disorder (ADHD), and has worked in pharmacy as a technician for some years now, I’d like to take some time to address what seems like a pervasive issue for those of us struggling with ADHD: getting our meds on time and dealing with insurances and pharmacies in general.

I see a lot of posts on here about this, and instead of responding to them all I thought I would just make a post that hopefully lots of people will see. I have been both the patient and the staff when it comes to getting my meds, or dispensing them, so I hope you guys trust what I’m saying here. I’m hoping this will cover as much ground as possible, but that means it will probably be pretty long, so buckle up, kids.

Disclaimer: This is in no way a guide on how to get medications from your doctor initially. Any guide like that would hopefully be deleted by the mods. You should only be taking medications that are prescribed by your provider after they have made a proper diagnosis. Attempting to manipulate your provider into giving you drugs, soliciting advice on how to do so, or giving advice on how to do so is fundamentally wrong. This is simply a guide that will hopefully clarify the process of getting your medications filled in a timely manner, and will hopefully help people understand how to pay for medications. I am not making any medication recommendations nor am I attempting to give any medical advice. Please bring anything that appears to be contrary to that intention to my attention so I can address it.

The drugs

Firstly, medication used to treat disorders like ADHD are medications like Adderall, Adderall XR, Vyvanse, Ritalin, and more (dextroamphetamine, dextroamphetamine-amphetamine salts, lisdexamfetamine, methylphenidate are their generic names, respectively). These drugs are considered first-line treatment options for ADHD. The D.E.A. (Drug Enforcement Administration) and the U.S. government, however, also classify these drugs as Schedule 2 controlled substances. There are five schedules (read: categories) of controlled substances under the Controlled Substances Act of 1970. Schedule 1 drugs are considered totally illegal, are believed to have no medical value, and are believed to be highly habit-forming. The devil’s lettuce and heroin are two drugs in this category, just for some context. Schedule 2 controlled substances are as controlled as they can get without being totally illegal. They are considered highly addictive, and dangerous, yet they are still permitted for use because they do have medical value. This is the category under which most medications used to treat ADHD fall.

If you’re not sure whether your medication is a controlled substance, Google it and find out. Opioids like hydrocodone, fentanyl and oxycodone are also in this category (notably, so too are methamphetamine and cocaine, but we’re not here to talk about that.) This being the case, the prescribing (what the doctor does) and the dispensing (what the pharmacy does) of Schedule 2 controlled substances (henceforth to be known as C2’s) are under a great deal of scrutiny, largely due to the opioid epidemic. Thus, there are strict rules in place for how these actions can be performed.

As an aside, the Controlled Substances Act is a crock of shit; it was developed and passed solely to put people of color into prison so they couldn’t vote, and you should tell people this as often as possible because all drugs should be legal and the war on drugs is a fucking scam. However, this is the system in which we live so I will tell you how to operate within it.

The process

Given the scrutiny inherent to the prescribing and dispensing of C2’s, there are strict rules in place to ensure that these medications are not being overprescribed or overdispensed. A lot of doctors and pharmacists are under a great deal of scrutiny when it comes to these meds, indeed controlled substances in general, thus they are reticent to prescribe them or dispense them early without good justification.

Insurance companies are also in this same position. If the Drug Enforcement Administration finds wrongdoing on the part of the doctor, the insurance, or the pharmacist, people lose their licenses to practice and their livelihoods, and risk jail time and/or massive fines. So please be aware that a lot of the reticence you may encounter when dealing with C2’s is due to this fear.

That being said, I will not deny that there is a great deal of bias surrounding these medications, and controlled substances in general, especially in pharmacies, but that is the result of years of a phony war on drugs that has taught the American populace at large that people who take medications that have been arbitrarily declared illegal (except under special circumstances) are scum and drug-seekers and are generally only worthy of scorn. Blame not the man who has succumbed to propaganda; he lost a battle which few of us win. Don’t take it personally, is what I’m saying, if you encounter this. It has nothing to do with you and everything to do with our garbage government.

I digress. So, basically, when you are prescribed these meds by your doctor, a process has to be initiated. Your doctor first has to ensure that they have appropriately documented your treatment course, your diagnosis, and have done their due diligence in ruling out other conditions. That’s not always the process but it is basically it.

Electronic or paper prescriptions

There are two ways in which prescribing can be done: one is that your C2 prescription can be electronically transmitted to the pharmacy; the other is that you may have to bring a paper prescription to the pharmacy, after picking it up from your doctor’s office. Some states require paper, some states allow electronic transmittal, and even some doctors don’t like to use electronic transmittal because they’re old and stupid.

So, now the pharmacy has your prescription. Yay! But now they have to fill it. In most places, the only person who can fill a C2 prescription in a pharmacy is the pharmacist. This isn’t the law, it’s more of a company policy thing. Consider your average CVS or Walgreens. Consider how busy they often are. How many white coats (pharmacists) do you see behind the counter? Usually even on the busiest days there may be 2 or even 3, and a bunch of techs. Most retail pharmacies are chronically and critically understaffed. Pharmacists are also the only ones who can verify prescriptions before they can be sold. So, just keep in mind how busy these people are, and for the love of God, be pleasant and be patient no matter how frustrated you are.

So now, you’ve picked up your first script, let’s say it’s a 30-day supply. Knowing the days supply is wildly important, so make sure you know how long it is supposed to last you if you’re taking it per the directions. This is important because the days supply of your prescription dictates how long it is supposed to last, and when it can be refilled again.

New prescription every time

If you’re not sure, just use this formula to calculate days supply: total number of tablets divided by max number of tablets per day (even if it says as needed, use the max. 1 tablet every 6 hours as needed is still considered 4 tablets a day, even if you aren’t taking that many). What is also essential to know is that C2 prescriptions are legally precluded from having refills attached to them, meaning you will need a new prescription every. single. time. you need a refill. Medications in schedules 3-5 can have refills, jsyk.

Mark down the day you picked your prescription on a calendar. Count four weeks (28 days) from the day that you picked it up, if you got a month’s supply. (Do this by simply going to the same weekday of the next week, so from Tuesday to Tuesday until you’re on the 4th Tuesday, for example). Mark the 28th day as “earliest pick-up” or something. Then, go to the 26th day and mark it as “request day” or some such. Day 26 or 27 is the day that you should reach out to your pharmacy and send ask them to send a refill request to your doctor, if you’re not having monthly appointments. Most doctor’s offices require 72 hours notice for writing new prescriptions. Use 72 hours as a general rule.

You’re marking the 28th day as earliest pick-up because most pharmacies and insurances allow controlled substances to be re-filled up to two days early, for convenience. Be aware that this is considered a privilege which can be taken away at the discretion of your doctor or pharmacist. However, it is certainly prudent to check with your pharmacy and insurance beforehand so that you can make sure you know how early you can refill your medication. Getting it refilled early every time certainly isn’t the goal, but knowing what kind of window you have to get a new prescription and pick up your refill will help make sure you don’t have lapses in taking your medication.

Be your own advocate

The most important part of this is that you have to be your own advocate. That’s a good rule for healthcare interactions in general, but it is especially important when it comes to medication refills. Do not ever expect the pharmacy to just send refill requests for you without you asking. Do not ever expect your doctor’s office to just know that you’ll need a new prescription and to write it, and do not ever expect that because you ran out of meds everyone else is going to make it their emergency too.

In general, don’t ever expect your pharmacy or doctor’s office to do something that you can do yourself. In fact, some pharmacies don’t send medication refill requests, so in that case you’ll have to call your prescribers office yourself. Plan ahead: know when you got your meds, how long they’re supposed to last, when’s the earliest you can pick them up, and when you should be asking for a new prescription. Plan around weekends, around holidays, plan around a trip you may be taking.

I know that this is difficult to do with ADHD, but if there’s any one thing you should absolutely focus on doing every month it is is this. We all know how important medications are to living life with ADHD. I can’t guarantee that following these steps will mean that you are getting your meds every month without fail and without a lapse in medication therapy, but following these steps will set you up for success.

The insurance (and paying for your meds)

Insurance is a bitch. Insurances will do anything and everything to prevent themselves from having to pay for anything, and medications are up first in the long list of “things insurance companies don’t like to pay for.”

A quick primer on how health insurance works, for those of you who may not know: Health insurance, ideally, is your buffer between massive medical bills and you. There are many different types, but when it comes to pharmacy only two things matters, really: your deductible, and your co-pay/co-insurance.

The deductible is a certain amount of money that you have to pay out of your pocket before your insurance will pick up anything. This a is a predetermined amount of money that resets at the beginning of every year. So, if you have a deductible of $500, that means that you have to pay $500 out of pocket for any medical expenses including prescriptions before your insurance will pay a dime.

Once you have paid your deductible, co-pay/co-insurance kicks in. A co-pay is a preset amount of money you have to pay, and is usually based on two things: Is the medication on your insurance’s formulary, and what is the days supply. If the answer to Question 1 is yes, then, usually, your co-pay is determined by the days supply. A 90-day supply prescription is $30, a 60-day is $20, a 30-day is $10, and so on and so forth.

Co-insurance, on the other hand, is your insurance saying, “We’ll pay 80% of the total cost of this med, and you pay 20%,” usually with no regard to days supply. If you have a co-insurance plan, be aware that they may have a tiered formulary, meaning that they’ll pay more for Tier 1 meds than they will for Tier 2 meds and so on and so forth. All of this is, of course, based on your insurance, so knowing what your prescription plan is is vital to being able to get your meds affordably.

What if it’s not on the formulary?

Let’s say your doctor has prescribed you a medication that is not on your insurance’s formulary (formulary being the list of medications which your insurance is readily willing to pay for, usually because they have contracts with the manufacturers of those medication that give them back a percentage of what they paid the pharmacy for the med).

The pharmacy will probably tell you that it needs a prior authorization before the insurance will pay for it. Essentially this means that your doctor now has to go to your insurance and say, “Bro, wtf, they really need this med, here’s all the documentation of why” and then the insurance will say, “Oh, well, when you put it like that, sure we’ll pay for it.” Or the insurance will say, “Yeah, we know you think that, Doc, but my two years of community college tell me that this patient (you) needs to try and fail on these two other medications that we are already willing to pay for before we’ll pay for this one,” or they’ll say, “Tough titty, Doc, I need a kid that doesn’t spend his weekends playing Minecraft and scratching his belly button, but I don’t call you about that, prescribe something else.”

All of these are possible outcomes of a prior authorization request, and exactly none of them are your pharmacy’s fault or your doctor’s (well, actually, your doctor could be a dink and have documented things poorly so in that case it would be their fault and you should get a new doctor). Also, never expect your doctor or pharmacy to know that a med will need a prior authorization. Some really good pharmacies may know, but if you’re lucky enough for that to happen don’t ever expect it anywhere else. Also, if your prior authorization gets approved, it only lasts for one year. So if you’re taking the same med a year later, be prepared to need another prior authorization. You can also call your insurance to ascertain a medication’s formulary status.

All of these things apply to private insurance. State/government insurances, like Medicaid and Medicare, have different rules which don’t necessitate our exploration at the moment. Medicaid co-pays are usually really low, and Medicare only pays for meds when you have a Part D plan, which is basically like private prescription insurance except it’s a bigger bunch of bullshit (Google “Medicare donut hole” if you’re interested).

Coupons, generics etc.

Now, let’s talk about coupons. For the purposes of this discussion, we must first define two terms: brand-name medications, and generic medications. A brand-name medication, like Vyvanse, for example, is a medication that is made by only one company, because only that company has the patent to make it. This means that the company with the patent is the company that sets the price; they have a monopoly on that medication, thus they can charge what they want and there is no competition on that medication to drive the price down.

These patents last for upwards of 10 years. However, once a patent expires, there is a 6-month period in which only like one other company can make the drug, and then it becomes a generic medication. Any drug company can make a generic medication, and generic versions of brand-name meds are typically much, much less expensive than the brand name. Now, what does this have to do with coupons? Well, pull out your smokes and have a seat, and I’ll tell ya.

When a medication is generic, it’s usually pretty cheap, with some exceptions. For ADHD meds, take Adderall IR (Generic name: dextroamphetamine-amphetamine salts). That medication is generic, thus it is pretty cheap to get. Cheaper still if you use a coupon card like GoodRx, or some other equivalent. Those coupon cards are really great for getting cheap generics, however they cannot be used in conjunction with insurance. It is one or the other.

Coupons don’t always work

Bear in mind, though, that coupon cards like GoodRx are not always accepted by pharmacies (specifically, GoodRx charges an outrageous processing fee for every prescription it is used on, thus pharmacies end up losing money on the fill). Your big retail pharmacies usually will, but smaller retail pharmacies may not, and I have yet to hear of a single independent pharmacy that does accept GoodRx. GoodRx is not the only option for coupon cards, but it is “the gold standard,” so to speak. Lots of states also have prescription drug discount cards that you can request and have mailed to you, or your pharmacy may have one. Just ask.

Now, let’s say your doctor prescribed you a brand-name medication, like Vyvanse. If you have insurance, they may pay a good portion of it, but it could still be expensive. Let’s say you’re in that pesky deductible period, and your insurance wants to charge you $450 for just a 30-day supply of the stuff! Disgusting, criminal (it really is though a capsule probably cost like 3 cents to make, like insulin.)

But, don’t worry, a lot of brand name drug manufacturers have manufacturer coupons which will lower the price of the med and generally can be used in conjunction with private insurance. The other cool thing about this is that if you are in a deductible period, and you use a manufacturer coupon, the money you save actually pays part of your deductible. So let’s say you use the Vyvanse coupon to drop your price from $450 to $30, the difference of $420 (haha blaze it lmao) goes towards your deductible, as long as it’s processed alongside your insurance.

Dropping the price from $950 to $10

Once a guy came in with a script for Eucrisa, an outrageously expensive eczema cream, and his copay was $950. I found the manufacturer coupon online and got his copay down to $10, with difference going towards his deductible. It’s as easy as Googling “[brand name drug] coupon” and looking. Usually all you have to do is sign up for it. Keep in mind that when you sign up, the coupon only lasts for a year before you have to renew it, or there may be a limit of one per lifetime.

Also, never just pay the price without insurance that the pharmacy gives you. Walgreens and CVS are especially guilty of this, they mark up generic prices at an outrageous percentage. I’m talking like, they’ll charge you $90  for a medication that you can get for $30 through a coupon card. Even on their receipts they’ll put like “Cash Price: $450 Your Price with Insurance: $10” on a 90-day supply of some blood pressure med that costs them 0.0005 cents per pill to buy.

The final thing that I wanted to mention in this section is that, as with everything in health care, you have to be your own advocate. Especially when it comes to coupons. When I worked retail pharmacy I was lucky enough as a technician to have time to look up coupons for people, but a great majority of retail pharmacies do not and will not take the time to help you with it. You’ll have to do it yourself, but it’s really not a long process.

The other thing I wanted to mention too is that if you don’t have your insurance card when you go to the pharmacy, it’s very difficult to find the proper insurance info for you, and it often takes time that staff isn’t willing to spend when they have 10 people in line and 500 prescriptions to fill. If you don’t have your insurance card because you haven’t received it or because you lost it, you can call your insurance company and they can give you the info over the phone that you need to give to the pharmacy so they can process your prescription. (You’ll probably never need to know this, but the pharmacy is usually looking for BIN#, PCN, Group #, and ID #.)

Quick tips

That more or less sums up everything I want to say. I definitely feel like there are some things I wanted to add, but I seem to have forgotten them now (that may be a symptom of something, I’m not sure). To finish it off here are some quick tips I have thought of while writing this:

  • If you see your doc for med checks every three months, ask them to write you three prescriptions at a time. They can date the prescriptions so that they won’t be filled until a certain day, and takes the hassle out of calling for it every month.
  • If you don’t have insurance, or you have bad prescription insurance, or limited income in general, focus on working with your prescriber to find a generic medication that works for you. Most generics really aren’t very expensive, but do keep in mind that capsules are almost always more expensive than tablets
  • Don’t forget there is a lot of bias surrounding these medications, and don’t internalize it or let it get to you. Chances are that you will encounter some asshole pharmacy employees who will judge you for taking these meds, just remember that it’s not actually about you, it’s about their warped perceptions. Choose compassion first, before anger.
  • I am saying this again, for emphasis: BE YOUR OWN ADVOCATE; Don’t expect anyone to do for you what you can for yourself.
  • Don’t get mad at the pharmacy please. A lot of pharmacy staff are overworked, underpaid, and they take abuse from all sorts of people throughout the day. If your script isn’t ready, or they’re being kind of rude, just choose compassion first. Seriously, pharmacy techs especially get called some terrible things by customers. I got spit on once because this guy’s prescription was dated to be filled the next day by his prescriber (a C2, go figure), but he was “out today.” When I told him we couldn’t fill it he said “go fuck yourself fat ass” and spit on me. Just be pleasant.
  • if your prescription went through your insurance, your insurance is the one that set the price, not the pharmacy.
  • Medicare Part D prescription coverage cannot be used in conjunction with manufacturer’s coupons.

That’s about all I can think of. I hope this guide is helpful and not too disorganized, and I hope I haven’t missed anything important. Please feel free to add things in the comments. If I am mistaken on anything please let me know.