a woman running over hill and dale, lightening following her, looking for her medication

When There’s a Shortage of the Medicine That Keeps You Alive

I need 2 medications to survive.

I don't mean it in the sense that my health would deteriorate faster. And I don't mean it in the sense that my life would be hell – like not having painkillers.

I mean it literally

I have autoimmune polyendocrinopathy type II, which means (among other things) that I have Addison's disease; my adrenal glands don't work anymore.

I have other conditions, and take meds for many things, but they are not as essential. Yes, without those, my health would deteriorate, as would my quality of life. But I'd be alive.

I need to replace my body's missing cortisol to stay alive

When your adrenal glands don't work, you don't produce cortisol, a hormone your body needs to function. Without cortisol (either natural or synthetic), you die. It seems blunt, said like that, but it's my reality. So I need to take some form of glucocorticoid to replace it.1

Hydrocortisone, prednisone, and dexamethasone are common glucocorticoids. I also need to carry an emergency injection because in case of acute stress (like an injury), my body needs a lot more cortisol. If I don't replace it enough, it can trigger an adrenal crisis, which can be deadly very fast.

A history of medication shortages

Spring 2020

In the spring of 2020, there was a shortage of the most common replacement, the one I was taking at the time: hydrocortisone tablets. I was lucky, only 1 dosage was in shortage at first, so I was able to get higher dose ones and cut them. By the summer, they were back in stock.

Summer 2021

In the summer of 2021, once again, there was a shortage for a few months. Because of the previous shortage, I had started to order some extra – a little bit here and there over the months – which meant, luckily, I wasn't in trouble.

Winter 2022

And then, in winter 2022, it happened again. This time, it seems a shortage of dexamethasone didn't help the issue. Hospitals and pharmacies had to replace it, using hydrocortisone, and it created a domino effect.

Having multiple options is a plus

Those like me, living with adrenal insufficiency, are lucky: multiple different medications can keep us alive, even if it might not be the best option (there's a reason we don't all use the same one!).

I switched to dexamethasone a year or so ago, because I didn't do well on hydrocortisone. But using hydrocortisone, prednisone, or any of the other alternatives (or using a different format, like 20 mg instead of 10, or the injections) would keep me alive.

One shortage can lead to another

The issue is, the longer a shortage lasts, the more other similar drugs start to miss. A shortage of 10 mg tablets means the 20 mg tablets are used more, so they, too, stop being available.

Then other brands are used to replace it, but their production hasn't been increased to compensate, so they get in shortage as well. And then, other types are used (for example, dexamethasone instead of prednisone), and if the shortage lasts, it becomes an issue too.

Drug shortages are a worsening problem

I've suffered other meds shortages in recent years, and it's gotten worse with the pandemic, with supply chain issues and more people needing medication. A pharmacist friend told me it used to be once in a while, for one drug – and now it's multiple shortages they have to deal with daily!

This month I learned that there's a shortage again – of both hydrocortisone and dexamethasone. So both meds I need. And this time, the issue is for multiple dosages (10 mg and 20 mg) and from multiple brands.

There's also a shortage of the liquid versions of both meds, for IV and the emergency injection vials. This shortage is in pharmacies and in hospitals.

My stress is hard to put into words

Our provincial rare disease organization recommends bringing my own emergency injection if going to the hospital because it's possible they wouldn't have it. After "Bring your own wine," "Bring your own meds!"

Learning about this is so stressful. I find it hard to put in words. But let me try: it's like learning you won't be able to get access to any food at all except what you already have at home. And if you're not able to get some food before you run out of your emergency stock, you just can't survive.

Sadly, meds are much harder to find than food! And both due to regulations and common sense, you can't have a huge stock "just in case."

How I am coping with the current shortages

Also, I wouldn't want to buy triple what I need, even if it were possible, because it could mean another patient not getting enough. My survival isn't more important than that of another human being.

So I just try to have a bit extra. For example, my pharmacist suggested I get 3 months at a time, so in case of a shortage, I'm OK for a while (unless the shortage happens at the end of my 3 months allocation!).

But overall, I can only hope that the shortage won't get worse, will resolve sooner than planned, and that I won't need to use other glucocorticoids. But I can't help but worry that this time or the next, or the one after that, my time will be limited.

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