What happens when there is a shortage?

[blackcat]

I saw a couple of posts on >-bleeped-< today about shortages, and it made me wonder... What exactly happens when there is a shortage?

Does it vary from pharmacy to pharmacy? Can you get your prescription changed? Do you pay out of pocket for a different brand?

I've also seen people talk about stockpiling, but the way my script works is that I'm provided exactly as much as I need for X amount of time and can't get more than that.

Has anyone ever been negatively affected by a shortage? How did you deal? What if you've had a hysto?

This is all hypothetical. I'm just curious!

[Kylo]

I am wary of shortages because I've already experienced what it's like to quit hormones cold turkey before - i.e. female hormones after taking them daily for years to stop periods. The effects on the body of withdrawing either estrogen or testosterone completely from a daily regime are unpleasant to say the least. If you have no access to hormones and have already had your ovaries removed, you are at a much higher risk of heart disease, diabetes, and a few other illnesses, since the entire burden on creating the necessary estrogen and testosterone for your system will fall on your adrenals and that is usually not enough. E and T don't just function as sex hormones and maintainers of secondary sex characteristics like beard and muscle mass, they also regulate a lot more behind the scenes. If they are suddenly taken away you suffer a hormonal crash that could lead to fatigue, joint pain, random pain, muscle soreness or stiffness, cloudy mind, and so on. My experience of it was that I could only function half a working day without needing to sleep and I felt literally weak and somewhat ill all the time for about a year till my glands kicked in. It was awful. 

That in mind, I have a year of T canisters stockpiled in case of shortage and am building it up to 2 years since the canisters have roughly a two year shelf life. I do not use injections so I don't know how long the suspensions last. I have seen supply problems at my chemist before, and the procedure was "wait". None of them in my area actually have the thing in stock at any time and have to order it in from a national hub, so if there is a supply problem it would affect me if I didn't have my stockpile. I suppose in emergencies I could make an appointment at the GP for them to give me an injection, provided they don't have supply problems too. If there was some national supply crisis or issue there isn't a whole lot I could do since T is a controlled substance. Getting it in gel form wouldn't exactly be easy through other routes, if at all possible.

They have been asking me if I want an auto-renewal on my 'script and I refused, because that means I won't be able to order as much as I want when I want. It could be at some point they make this mandatory which will end the ability to stockpile. That's why I'm trying to build my supplies up first (and before Brexit, in case that affects the T supply from Europe).

In all, this is my only major gripe with transition - the dependency on a regular hormone supply. It would become a problem if the availability was suddenly interrupted... being without T would render me a mess for who knows how long. My ability to work would probably be affected.

[Magnus]

Yes, back in 2012-2013 (it was the actual raw base that was unavailable - meaning *all* IM Testosterone was unavailable, for months, throughout *all* of North America). But back then, we still were dispensed the 10mL vials. One lasted me about 8 months, so I wasn't affected. There was another instance I want to say around 2015, but the pharmacy sorted that quickly and came through.

If there were a shortage like in 2012-2013 again and you don't have a stockpile, you're pretty much SOL. You have no choice but to wait it out. Or if your doc's really cool and reachable, maybe to switch to something else (patch, gel, cream, whatever actually isn't shorted).


Ironically, where I absolutely wasn't able to before, I am now able to stockpile "extra" T, courtesy of the CDC's crusade against both multi-dose vials (for home use) and also single-dose vials being used as multi-dose vials (in clinician's offices and at home). This great inconvenience has worked out into a pretty nice little loophole for me.

Basically, by their own rules, physicians cannot prescribe and pharmacies cannot dispense these wee 1mL vials cumulatively in a way that would force us to double-dip into these "single dose" vials (even despite controlled substances legalese; FDA hates you getting even a drop "extra". That is otherwise what would happen sans these new rules). Because they're not made the same as multi-dose, they are theoretically more susceptible to vial contamination (which if that happened, you see, they'd be liable and open to litigation if it weren't prescribed and dispensed as one vial per one dose). They must therefore prescribe one vial per one dose. So anyway, I happen to need half of one of these vials. I therefore can and have been drawing two doses per to net myself an "extra" 1mL vial after every two doses. I have now for well over a year. No problems whatsoever. I store, handle and use my vials correctly (a lot of people, if CDC data is to be believed, 55% of people, don't; that's why the CDC got onto this crusade to begin with; against the 10mL vials in particular).

I fill new scripts as always, but store those new vials. I use my older "extra" vials first. Also good to know, the "expiration" isn't actually an expiration. It will reduce in potency, slightly, beyond that date but it's only actually expired when its cloudy, off-color or not as viscous as it should be (I've read that takes well beyond 5 years and typically only when the vials have been stored improperly).

Let's just say, by now, even if there were a year's shortage... well...

Unfortunately, this arrangement wouldn't be doable for everybody. For those it wouldn't, I really feel bad. Shortages are not rare. They're common. And it sucks. Hell, it even being a CIII with extreme hoops to jump through just for that factor, sucks. I am still routinely 1-2 weeks overdue in actually getting my scrips filled for that because they're not allowed to even order it in advance of that date (doesn't matter for me now, but... still. Completely ridiculous).

[Lucca]

This is something I worry about as well. At the point that you have your original sex organs removed, you need to have externally applied hormone therapy of some kind to be healthy, but healthcare providers and the government don't seem to view hormones as being necessary in the same way they'd view other drugs with similar withdrawal symptoms as being necessary. So, what if there's a shortage and I'm unable to get it? What if the price increases and I can neither afford to pay for them out of pocket or my insurance won't pay for it? What if hostile politicians pass laws that restrict my ability to get them? I've had enough trouble trying to get other drugs using our crappy American healthcare system that the thought of signing up for all this red tape for the rest of my life puts me at unease.

My anxiety about becoming dependent on a medical treatment that's both fairly uncommon and that a large number of people want to prevent me from taking freaked me out enough that I didn't want to consider transition for awhile, but I'm at a point now where I don't think I can afford to not take the risk. I'm going to feel pretty disappointed with myself in 40 years if I let something like this get in the way of my self-discovery.

[invisiblemonsters]

there was a shortage of my testosterone a few years ago. all they did was change the brand i was using. that i guess doesn't work for everyone if you're allergic to what the testosterone is suspended in though. if my pharmacy doesn't have it, i just get it from somewhere else.

[blackcat]

I am legitimately terrified of ever having to feel an estrogen dominant system again. I didn't transition until it boiled down to transition vs. killing myself. It makes me wary to be dependent on an exogenous substance; but I suppose the flip of that is whatever time I get on it is more than I would have had without it.

(UGH! I SWEAR I'm not actually in a dark mood while I'm writing this. )

There are so many people with other illnesses that are dependent on medication. It's a little eerie making that choice for yourself.

What do they say, buy the ticket, take the ride... No regrets, though.

[Kylo]

Well it's not going to kill you to be without the hormone, but in the worst case scenarios it's going to be unpleasant and difficult. But hopefully, the medical industry and profession at large recognizes the importance of T not just for us but for all sorts of conditions that need treatment in cis men as well. So if there's an issue it can be raised. If it's in industry with a market you can bet a pharmaceutical company won't want to leave the chance to make money by the wayside for long, either.

Supply problems usually arise from the fact chemists order from particular suppliers, and these can be switched. I could only see a very long term issue arising if we have some sort of Mad Max apocalypse scenario on our hands or if the price becomes completely unaffordable. But it's not in a company's interest to price itself out of a market.

[Lucca]

Supply problems usually arise from the fact chemists order from particular suppliers, and these can be switched. I could only see a very long term issue arising if we have some sort of Mad Max apocalypse scenario on our hands or if the price becomes completely unaffordable. But it's not in a company's interest to price itself out of a market.

Haha, well, to be honest, that's a worry I've had before too, even if it's pretty irrational. I've been anxious about being dependent on corrective lenses for vision or medication for my acne and hidradenitis for years. What if I'm stranded on a desert island and lose my glasses and can't get my medicine?? I'll be blind and pain constantly !

I'd say more people than not probably have some kind of medical issue that requires constant supportive care, though, so I'm really just in the same boat as everyone else.

[smithers 70]

I've been on T since 2009, have always been prescribed 10mL vials, have filled my scrip 3 different pharmacies in 2 states and have never been affected by any shortages. Of course its still something I think about though!

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