Epilepsy Talk

Is your medication out of stock? Here’s how to get it anyway. | April 13, 2024

The pharmaceutical supply chain is broken, but if you’re facing a drug shortage, you have more power than you think…

By the time people get to Laura Bray, they’ve been failed by the US government, all of its agencies, and the entire global pharmaceutical supply chain.

So when someone calls her at Angels for Change, the patient advocacy organization she founded in 2019 with a mission of ending drug shortages, one of the first things Bray does is reassure them that they’re not the problem.

“I want you to know that drug shortages are real. You deserve access to the medicine,” she tells them. “And it’s not their fault, and somebody should have done better. And they all cry,” she says.

Bray gets an average of four requests a day, and depending on who’s calling, the work she does in response may help anywhere from a handful to thousands of patients.

Although many of her calls come from clinics, hospitals, and manufacturers, she often hears from individual patients — and when she does, she suggests they take the series of steps outlined below, which I’ve interspersed with tips from the other experts I spoke with. 

Although it’s easy to feel a sense of panic when facing down a shadowy tangle of dysfunctional institutions, take a deep breath and know that there is a path forward, and there are resources and advocates out there that can help.

It’s obviously less stressful to have a few days to deal with a drug shortage rather than a few hours.

When you can, plan ahead: If you’re reupping a drug you’re already taking, “give it a few extra days as opposed to waiting until the last minute to request a refill,” says John Beckner, a pharmacist who directs strategic initiatives at the National Community Pharmacists Association (NCPA).

Before you do too much work, it’s worth seeing whether an independent pharmacy in your area can locate a supply of the drug you need.

They’re less likely to just say “We’re out of stock — we can’t get it,” says Beckner. “They’re going to explore other means to try to obtain that drug.”

That may mean calling around to smaller drug wholesalers or buying a small quantity of a medication that might not be on the radar of a drugstore that buys medications by the pallet.

You can find a local independent pharmacy using the NCPA’s pharmacy locator website.

If you’re still unable to get the medication you need, here’s what Bray counsels people to do.

Parts of this process are things patients must do on their own, but Bray is happy to help people who get stuck at any point along the way and welcomes contact by phone or email.

1) Look for the generic form of the drug in the two drug shortage databases that contain all the information available to the American public about specific medicines’ availability: the one maintained by the FDA and the one run by the ASHP.

They’re similar, although the ASHP database has a lower threshold for reporting a shortage, says Bray. 

This first step helps patients determine not only which brands and dosages of a drug are unavailable, but also which are available.

2) Call your insurance company, ask to speak with a manager, explain that you are affected by a drug shortage, and ask them to give you coverage for whatever alternative form, brand, or dose of the drug you might be able to get access to.

The reason to do this is that insurance companies cut deals with various drug intermediaries — called pharmacy benefit managers — for specific medicines within each class of drugs and specific dosages of those medicines.

Ostensibly, they do this so they can buy those specific medicines in bulk quantities at a discount and cover most of their cost when they are prescribed to you.

The list of medicines and dosages an insurance company covers, its hot list of sorts, is called its formulary.

But where there’s a hot list, there’s a not list: If you’re prescribed a dosage or brand of a medicine that isn’t on your insurer’s formulary, or a similar medicine that isn’t on its formulary, the company won’t cover it — and you’ll have to pay for it out of pocket, which can be wildly expensive.

Patients can ask their insurers to temporarily cover a drug that isn’t on their formulary in a shortage situation like this, says Bray.

“Say, ‘I’m going to be talking to my physician about giving me access to the [forms, brands, or dosages of the drug] that are available here and changing my prescription.

Can you ensure that you open up the formularies while this shortage is happening so that I can get access to any of them?’”

Bray suggests explaining that you would not be asking for this change if the on-formulary drug were available to you, but it’s not.

The conversation — one patients or their policy holders must have with their providers themselves — is usually successful, she says.

3) Contact the health provider who prescribes the unavailable drug, let them know there’s a shortage, and ask which of the available alternatives they can prescribe you.

Bray suggests sending them a link to these alternatives. They’re easy to find in the ASHP database — just click on the name of the drug in shortage and scroll down to “Available Products.”

Providers are often aware of shortages and generally want to do the right thing to help patients get through them, says Ehrenfeld. 

If your provider sends the alternative prescription to your pharmacy (or a hospital’s pharmacy, if you’re calling on behalf of a hospitalized patient) and the drug is in stock, this might be the triumphant end of your road.

If not …

4) Seek an alternative pharmacy. If your usual pharmacy is part of a large chain, staff may be able to check the inventory of other local chain outlets, either online or over the phone — just ask.

Again, nimbler independent mom-and-pop pharmacies may be better able to fill in drug availability gaps.

In addition to having access to different supply lines, their staff may have more time to make calls about small quantities of scarce medications or their alternatives.

In general, says Beckner, your pharmacist — whether independent or at a chain — “can really become your advocate and confidant,” especially if you’ve established a good relationship.

5) Call Angels for Change,  if you’re still struggling to find the medication you need after all of this, urges Bray.

She can work to identify the supply map for a medication, and she can reach out to its manufacturers to inquire about any emergency supply they may have on hand and clarify the timeline for having more supply available. 

It might be tempting to look online for a medication when you’re affected by a shortage, either on social media or by ordering from a sketchy internet pharmacy.

All of the experts I spoke to recommend against this approach.

You never know whether the medication was stored properly or whether it’s counterfeit, and you’re at risk for being price-gouged,” says Fox. 

Bray’s strategy is one “that requires sophistication and a lot of work that just should not be necessary in this day and age, with all the technology that we have and all of the resources in the nation,” says Ehrenfeld.

“It’s because we have erected barriers to getting people the care that they need.”

For the full article and further information, click on: https://www.vox.com/even-better/24062409/medication-shortage-drug-stock-medicine-pharmaceutical-supply-chain-angels-for-change?email_hash=0da6e4ef52744cae510e1dbe58a5efd05410ba5a

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7 Comments »

  1. Patricia Swistak's avatar

    This piece is very timely. Our mail order pharmacy, Optum-Rx is currently experiencing a shortage for Depakote. We were put on a wait list. Fortunately our local pharmacy was able to locate some. This has happened to us twice before over the years. It’s very unsettling.

    Liked by 1 person

    Comment by Patricia Swistak — April 14, 2024 @ 7:39 AM

  2. Roy Anthony's avatar

    As a result of what seems to be more insurance companies denying approval for Brand name drugs (because they cost more), I suggest we all consider the following. If I am a med producer that makes Brand name AED’s and there comes a day where there is less demand because fewer and fewer people (personal & insurance co-related) can not afford them, I as the med producer, will no longer make the medication. For me, generic meds do not work. I need the Brand name. So, I have real concerns for shortages in the future. From what I’ve read from others, like me, I can only obtain a 90-day supply.

    Liked by 1 person

    Comment by Roy Anthony — May 1, 2024 @ 2:25 PM

  3. Phylis Feiner Johnson's avatar

    Actually, I’d be happy to be able to get a 90 day supply of my meds, instead of schlepping back and forth to the pharmacy.

    But there is the sticker price factor. And if you can’t come up with the “deductible”, what do you do?

    With me, like Patricia, they often don’t have the generic or the brand name in stock and I have to wait, which as you can imagine, is not too great.

    And according to the FDA and the other powers that be, there are umpteen drugs that are already not available, although the need for them is high.

    So, you might say “he who laughs last…” Assholes.

    Like

    Comment by Phylis Feiner Johnson — May 1, 2024 @ 2:41 PM

  4. Roy Anthony's avatar

    This is something that the Epilepsy related organizations need to place on their priority list. There should be some way to express, nationwide, to epilepsy organizations that this is a critical matter … and not just for Epilepsy, but things like dementia, etc. There are now meds for those that have dementia that slows down its progress. This is another example of a med that should not become in short supply. How many of the 10, 12, whatever millions of people who are now in the US have epilepsy…..shortage?

    Liked by 1 person

    Comment by Roy Anthony — May 1, 2024 @ 5:09 PM

    • Phylis Feiner Johnson's avatar

      Cancer drugs are in such shortage that they literally have to have a sort of lottery for who gets the chemo and who doesn’t.

      Imagine being a patient in that situation. It’s bad enough knowing whether the chemo is going to work. But not even having the chance, is reprehensible.

      Advocate associations all are players on Capitol Hill. Cancer, Alzheimer’s, Diabetes, Neurologists.

      They all have the same plea. They all get the same answer. “Sorry. Not today.”

      Like

      Comment by Phylis Feiner Johnson — May 1, 2024 @ 5:21 PM

  5. epilepsy67's avatar

    When you can, plan ahead: If you’re reupping a drug you’re already taking, “give it a few extra days as opposed to waiting until the last minute to request a refill, Quote from John Beckner, RPh.

    Most pharmacies will allow a 7-10 day advance on drugs that aren’t a controlled substance.
    Where as the controlled agents will vary from the different pharmacies. with controlled agents only get get a 5 day window, again varying on the pharmacy & the Pharmacist on duty.
    Private home town pharmacies I have had better luck with over the national chains.
    The get to know their customers where as national chains you are lucky if your name is spelled correct.

    Liked by 1 person

    Comment by epilepsy67 — May 25, 2025 @ 8:53 PM

    • Phylis Feiner Johnson's avatar

      All very super advice. Thanks for your insights. A lot of good advice if you’re talking about the “ordinary”.

      When you get to the “extraordinary” that’s where your pharmacist, Doc, PA or whoever you can think of, needs to pitch in.

      ”Suffering” is the word that comes to mind.

      And as you said, anything you can do, get on top of it. The sooner the better.

      Like

      Comment by Phylis Feiner Johnson — May 25, 2025 @ 10:50 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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