Lessons on navigating the ADHD medication shortage

Y’all, I am bursting with opinions and feelings about the ongoing ADHD medication shortage. There’s a lot to say here. About the pharmaceutical industry, about health insurance, about the state of healthcare in the United States generally. However, I’ll save that for another day.

Today I want to share a few lessons I’ve learned, because overcoming barriers to getting our meds requires privilege. It requires time, energy, persistence, and sometimes money. Every day I have enough of those things to solve a(nother) meds refill issue, I am keenly aware of how many people do not.

Many pharmacies will tell you, “[Your ADHD med] is out of stock. We don’t know when we’ll have it again.” If you hear that from enough pharmacies, you might think no one can get that med until the shortage abates. This isn’t necessarily true.

However, most of us can’t afford to spend hours during the work day playing phone tag with pharmacies and our doctor’s office, or driving around to a dozen different pharmacies to ask about their stock. That’s why I’m sharing what I know with you.

Disclaimer: I’m not an expert. This is not a comprehensive report. I have zero qualifications to give anyone individual guidance about their meds, and I haven’t set out to do so here. What I am qualified to do is pass on knowledge I’ve gained through my own experience and privilege, so others might benefit.

First of all: how real is the shortage?

In case anyone has any doubts, there is a real shortage of ADHD meds. The reasons for this could be a full blog post of their own. Suffice it to say for today, production quotas set by the DEA have failed to predict demand. Pharmaceutical manufacturers have been unable to produce our meds in the quantities doctors are prescribing them.

At first I feared the moment we began having trouble finding our meds, things would only get worse as supplies dwindled. This would make sense. However, the situation on the ground has played out a bit differently.

Yes, sometimes pharmacies experience real challenges getting ADHD meds in stock. One pharmacist told me, when I spoke with them in February, Adderall was backordered with all fourteen of their suppliers and they had no indication when it would become available again.

And yet this doesn’t mean the Adderall supply has run out. There is still a supply, and some pharmacies can still get it. It just might require more vigilance and come at a higher price.

Some pharmacies appear either unable or unwilling (or both) to navigate the compound issue of supply shortages and price volatility. Others will say a medication is out of stock as shorthand when they really mean, “We have it but we may not be able to fill it for you.”

Either the meds are out of stock, or the pharmacy can’t afford to lose money on them.

I was disappointed but unsurprised to learn health insurance carriers are contributing to the medication shortage — at least from the patient perspective.

My health insurance, like many others, has a tiered plan for prescription drug coverage. Generic drugs occupy the lowest tier. Most of them only carry a $10 copay. Brand-name drugs with no generic equivalent are a little pricier. Brand-name drugs with generic alternatives are, if we’re lucky, in the highest tier with a $50 copay. (Sometimes insurance will deny prescriptions for brand-name drugs when a generic exists.)

Pharmacies are subject to these tiers as well. Our insurance carrier has a set rate at which they reimburse for, say, methylphenidate hydrochloride, the generic name for Ritalin LA.

While the insurance reimbursement and patient copay remain the same for any generic substitution for that Ritalin LA, the actual cost of the product fluctuates between manufacturers and suppliers. This increases demand for the lowest-cost options. In a shortage, those cheap drugs will be the first to disappear.

If a pharmacy has paid $140 for a thirty-day supply of my meds but my copay and the insurance payout combined will total under $40, I understand why they might tell me they don’t have any in stock. No one can reasonably expect a business to take a $100 loss to fill my prescription.

And yet this puts anyone who relies on that $10 copay to access their meds at risk of being disproportionately affected by the shortage. I imagine a lot of pharmacies may be unwilling to order higher-priced generics in the first place. Those that are have no reason to offer their stock at a loss.

4 strategies that have helped me fill our prescriptions during the shortage.

This is unfair. It stokes the fires of my loathing for health insurance carriers in the US. I also think we’re better off knowing than not. I shared that last bit not because I have an easy solution, but because I think people need to know the forces at play.

Maybe folks will write to their elected officials, and maybe someday we’ll see true improvement in our healthcare system. In the meantime, it makes me feel a little more sane when every doctor and pharmacist I speak to tells me, “Dealing with insurance is my least favorite part of my job.” It’s not just me. The whole system is really the worst, and anyone with patients’ best interests at heart seems to hate it as much as I do.

But what can we do right now? I’m going to share with you a few strategies that have helped me maintain our family’s access to ADHD meds throughout the shortage. Unfortunately, all of them require some degree of time or money, but I hope some of our experiences will help you navigate the system.

Work with an independent pharmacy.

Ditching chain pharmacies was the best move I ever made, in terms of getting our family’s ADHD meds every month. Chains are beholden to their corporate policies, which are all about minimizing risk and maximizing profits. The bigger the chain, the lower your chances of getting an individualized customer experience. Even if a pharmacist knows and wants to work with you when things get tricky, they may be constrained by their employer from doing so.

I also feel like indie pharmacies are more motivated to do that legwork to stock ADHD meds during a shortage. They’re a small business looking for ways to differentiate themselves from the big-box competition. This is one way they can do it.

Ask what your options are without insurance, or at a higher copay.

The math I shared earlier is really disheartening, and it might mean you get a “Nope, sorry” as your first response. No matter the issue, I’ve always found it helpful to ask what my options are if we disregard my health insurance. Can the pharmacy truly not order my medication at all, or are they just out of everything they could give me under my insurance plan?

A pharmacist should, assuming they have some degree of autonomy, be able to tell you the price they would need to charge in order to fill a prescription. Sometimes this is referred to as the “cash price” — the price someone with no insurance coverage would pay. This price can vary widely. I decide on a case by case basis whether it’s worth it. Either way, you never know until you ask.

With the Adderall shortage in particular, I’ve also found the brand name drug (manufactured by Shire Pharmaceuticals) can be easier to find than the generics. My insurance will allow us to purchase the brand drug in this situation, just at a higher copay tier. Not everyone can afford to pay $50 instead of the usual $10, but again, I had to know to ask for this option. Otherwise I would not have known it existed.

Ask about special promotions.

Sometimes pharmaceutical manufacturers will offer promotions or deals to pharmacies because they’re trying to gain exposure for a new drug. A pharmacist recently told me about a new methylphenidate (the active ingredient in Ritalin, Focalin, Concerta, etc.) formulation that was available for $50 through a manufacturer program. That’s the same as my copay for brand-name drugs. Thanks to the shortage, it’s also significantly cheaper than the lowest cash price I could find for Ritalin in March 2023.

Now, access to this drug would depend on my doctor’s willingness to write a prescription for it, and my willingness to jump ship (even temporarily) from the tried-and-true med I’m taking currently. Trying a new med to get around supply issues isn’t going to be a good idea for everyone. I’ve gotten mixed reactions from the doctors I’ve talked to about it. Most seem to prefer to keep a patient on a drug they know is working for them.

That said, some of us — myself included — already consider our current medication a Plan B. We find our current meds helpful, but we know we could be doing better. Chasing down meds in short supply also takes time and mental effort we might not have to give.

As Gina Pera points out in her ADHD Roller Coaster blog, sometimes it makes more sense to investigate alternatives than to continue fighting to get a specific medication. If you haven’t tried, you don’t know. Also, because there are just two dominant classes of stimulant meds for ADHD, the differences are really all in the delivery mechanism. If you aren’t married to your current med option, it might be worth trying something different — especially if it could also save you time and money.

A caveat: indie does not always mean superior.

In my experience, all of the above gets easier (or possible) when you switch from a big chain to an indie pharmacy. Tangible benefits for me aside, I also prefer to support a small business owner from my own community.

That said, I don’t equate “indie” with “excellent.” I had an incredible pharmacist at an indie pharmacy I trusted for years. Then things started slipping. My meds weren’t always in stock, or they wouldn’t notice an electronic prescription had arrived from our doctor’s office. More than that, the overall vibe was off. I waited way too long before I accepted the fact things had changed and I could no longer trust them to be on top of my needs.

Later I learned the business had changed hands, and the new owner was not a pharmacist. I wish I had followed my gut and cut ties sooner, before I wasted more time and stress. Filling our meds requires so much attention and follow-up. I can’t afford any unnecessary roadblocks, even seemingly minor ones.

From this experience I learned it’s always best to trust your instincts and pay close attention to how a business is managed, whether it’s an independent pharmacy or your local Walgreens.

Please share your tips and experiences!

This concludes my update for now, but if you have any information to share in the comments, please do. We can all benefit from sharing what we’ve learned.

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