Having your insulin pump die while you're on vacation | Hacker News Reader

Having your insulin pump die while you're on vacation

blog.lauramichet.com

196 pointsspeckx190 comments

Friend, you’re diabetic.

Your survival is ultimately your own responsibility. Prepare yourself for a few hard truths.

No one — including nurses and doctors who are not specifically trained in diabetes management — truly knows your situation.

I had a TIA. I was barely functioning, hospitalized, semi-conscious. Not a single person in the ER, nor during the entire week I was admitted, stopped to think that maybe I wasn’t mentally fit to manage my own CGM.

Always be prepared.

I once found myself in what my company had sold to me as a “hotel” in Germany. It was really more of a shack. I was having a severe hypo, glucose at 70 and dropping fast. There was no lobby, everything was closed, emergency services didn’t speak English, and I couldn’t even find a taxi willing to come out there.

I ended up licking sugar crumbs and biscuit dust that had accumulated over the years in the pocket of my suitcase.

Your CGM can fail. In fact, it will almost certainly fail while you’re on vacation on some Greek island with no signal.

You must know how to manage your blood sugar with insulin pens. Even with different insulin types. You need conversion charts. You need the phone number of your diabetes center so you can get proper instructions. You must be able to change an infusion set in the dark, slightly drunk, like Rambo — except this isn’t a movie.

You need to remember your insulin-to-carb ratio and be able to estimate the carbohydrates in a dish you’ve never seen before.

I’m lucky enough to be able to “feel” my blood sugar. More importantly, I can sense when I’m heading toward a hypo, and I do everything I can to preserve that personal superpower.

As we say in Italy, being diabetic is serious business.

My colleagues and friends see only the outside. They see a well-managed condition, an HbA1c of 6. They laugh when I tell some of the more extreme stories.

But they have no idea — absolutely no idea — how difficult our lives are.

Ours, and our families’.

Oh, and one more thing.

I always keep a blood glucose meter in my backpack. You know, that medieval-age stuff with the finger-pricker and test strips. (You can buy one for about €10 in pretty much any pharmacy in Europe, but it’s better to already have one with you.)

And pen needles, too.

P.S.

As a European, I genuinely struggle to understand how you cope with your healthcare situation.

In France, in a small mountain village, I walked into a pharmacy and, through a combination of gestures and sketches, managed to buy a box of rapid-acting insulin at full price (around €30–40).

The insulin was clearly available. The issue was purely bureaucratic — technically I needed a prescription from a French doctor. But the urgency of the situation, and the fact that I was obviously diabetic, were equally obvious.

We certainly have our own problems over here, don't get me wrong.

But I don't envy yours.

> As a European, I genuinely struggle to understand how you cope with your healthcare situation.

As an American, most Americans don't realize how bad it is because everything seems fine when you are insured and only need basic care. The huge problems aren't immediately apparent until you suddenly get diagnosed with something serious and become a cost center for your private insurer instead of pure profit for them. At that point they realize how fucked they are and how much the insurance company will fight tooth and nail to deny care.

Everyone else tries to ignore how fucked those people are out of superstitious belief that maybe they too will fall into the Unfortunate Situation group if they think about it too much.

In the US every CVS had rapid acting insulin for $35 for one month supply. This is not special to europe.

Are you talking about the Lilly Insulin Value Program? If you're uninsured, you do need to get the savings card but it's mostly a matter of filling out the form. And that's only since they started the program in 2020.

Yes, the manufacturers coupon. Savings card takes 2 min to fill out, I have done it on my phone at a CVS

> through a combination of gestures and sketches, managed to buy a box of rapid-acting insulin at full price (around €30–40).

Quick tip for people that might encounter such situations:

- Phone to the emergency number. In Europe, it's 112. In France 15 is also working. Explain your situation (they generally do have English support).

- In many European countries, it is a Doctor you will have on the line. They can forward a medical prescription by email to the pharmacy close by.

- Even if you are not insured, the only thing it will cost you is the price of the medicine. For insulin, it variates from 20 to 40€ depending of the country.

- If you are over weekend or in middle of the night, in many EU countries have emergency pharmacy system. Some dudes somewhere on duty will open a pharmacy for you and you have to come on site.

If you are in France and if you wake them up at 03h00am, you can probably expect the legendary 'frendliness' (irony) of French customer service but at least you will stay alive.

As an American, I am astounded at the the smug ignorance I see from Europeans online. I don't envy that cultural lack of self awareness

Are you trying to claim that American private healthcare is anything other than a giant shitshow of inefficiency, profiteering and death?

Re access:

You can also walk into any pharmacy or walmart in the US and by rapid acting insulin for about $20. no doctor, no insurance, and no Rx necessary (unlike France). Also, they had a massive supply of insulin. If they bothered, they could have bought some needles and looked up the conversion.

Regular Human Insulin isn't "rapid acting" it isn't delayed released like NPH, which lasts almost 30 hours, but it isn't "rapid". Yes getting R & NPH can keep you alive but it creates a caloric and glycemic burden as those types of insulin stoke the stove without enough glucose to run it. Some remote place in Greece might only have the pharmacy open M-F business hours like 8-4, we living in built up urban or suburban USA might not realize that other countries may not have pharmacies open late or over the weekend like here.

As to $20, their website says

"ReliOn™ NovoLog® insulin Rapid-acting mealtime insulin, starting at $73." on a block without any link to go further. This is rapid-acting but it is buried on the site to access any clear information about is that the stuff that can be accessed without a script.

You didn't bring glucose tabs or glucagon with you or get more when you ran out? Was it an overconfidence in your ability to feel low?

Exactly my question. Something is missing in this story. We carry a bag of sugar, juice mix, biscuits and candy

Until you don't. Then you'll have a story with something missing.

DR doesn't just stand for 'disaster recovery', it's 'didn't realize'. It'll always be the one day you didn't realize you forgot the kit...

Yes. Really

As a type-1 diabetic, in my experience it is perfectly possible to end up in a situation like this even if you are responsible. Remember, type-1 diabetes is a condition that requires your attention tens if not a hundred times per day. This is not just on good days, but also on your very worst days when you are juggling everything else that life throws at you and you may not have slept properly for days. So, maybe you had noticed that your emergency glucose was low, but in this instance out of a hundred you forgot to replace it when you came home because you were exhausted and then overslept and had to rush out in the morning. What makes type-1 diabetes challenging is not that you can not technically manage every single one of the decisions and actions that it demands out of you, it is that you must carry them out under all conditions and largely without fail for every day in your life or you will suffer both short-term and long-term consequences. Everyone I know has had a nightmare episode.

Just a final recent anecdote to illustrate some of the complexity. It may look like maths on the surface, but even something like "carbohydrate ratio" is a fluid concept. Yesterday for example I was out and about in the sun and had the very same bottle of sweet tea that I have had for months. Given that I knew I was physically active and it was hot, I reduced the usual dosage for this specific drink by 80% to be on the safe side. To my surprise, on this particular day for whatever reason this was still far too much and I pushed myself into hypoglycemia in little over an hour. We humans are highly dynamic and complex systems and this is me failing with the very best technology we have available: Insulin pump and continuous glucose monitor.

Yes but there has to be a reason why the nightmare scenario existed. For example in the article it was because the author had hubris over 20+ years of the pump never failing. It's a good admission of cause. I certainly can't blame them for it. They also admit they didn't have a backup plan packed. It's a humble article if you see through all the anger. Your scenario was caused by trying to do the right thing and it was still wrong. Again, great reason. Was the other commenter exhausted and overslept before the trip? We don't know. Did somebody steal their supplies? Did they fall in a vat of toxic waste? All we know is that they were on a trip with no packed way to increase blood sugar and I think we all agree that's not the expected plan. But they also say they're usually very good at feeling their blood sugar and were bait-and-switched by the trip organizer, so it's not unreasonable to assume they assumed they could catch anything early and just go buy something. Which isn't really a plan, again as we learned from the article.

As the saying goes, "The graves are full of hindsight."

In twenty years of living with diabetes, I've made an unbelievable number of mistakes — enough to fill a warehouse.

Every one of them became a lesson, provided it didn't kill me first.

One of the biggest lessons, in fact, was learning to be extremely organized and always prepared.

Yes, in that particular case I had already used up my supplies (and during a three-day trip I hadn't thought about bringing a refill), and, rather stupidly, I wasn't carrying glucagon with me.

I've never claimed to be smart — just a survivor of my own stupidity.

A perfectly cromulent answer, thanks

> while you’re on vacation on some Greek island with no signal.

Not diabetic but my car was stuck on a mountain on a Greek island with no signal. In hindsight it was fun, but when it happened I initially feared for my health. We were at the highest road stuck in the snow with a car that had no business being in snow. Luckily my wife is a born and raised Michigander and she showed my Dutch ass how to handle real snow. She started digging in the mountain side to grab as much small rocks as possible since every Michigander has cat litter so that wheels can get traction.

Without it, we would still be stuck.

> Friend, you’re diabetic. Your survival is ultimately your own responsibility. Prepare yourself for a few hard truths.

This.

The thing that struck me most was that for 25 of 27 years, they have relied entirely on machines and computers to manage the condition which means every hard-earned lesson you have experienced they did not and the author likely has very little person knowledge and experience on how to do anything off the pump.

It's the AI argument in a nutshell. We are handing things off to machines and losing the knowledge to do it ourselves.

Imagine if this were a systemic catastrophic failure, that lasted months... how many people would perish just because they weren't taught or never learned how to manage without the machine.

This feels important to read, and I appreciate the author's candor.

You have to remember that not every character (for lack of a better word) in every story you read, needs to be morally justified in their thoughts, emotions, and actions. This author is angry, humiliated, scared for their life. It's not compelling to discuss their thoughts without empathy. If you don't think you would feel or say the same, were you in their shoes, imagine "what would need to be true for me to feel, think, act that way?"

This way of empathizing, where you assume the role of another without assuming superiority, may help you better understand what the author is trying to communicate. What must it be like, what might they be going through, how vulnerable must it feel?

The author is dealing with a minute-by-minute reminder of how easy their life could end. Most readers will have never experienced this. On top of this, they are dependent on a company and system, which is only tangentially designed to keep their body alive. During a time when the author dare to have a vacation away from home, an experience something many of us don't realize we take for granted (maybe not financially, but the fact we are able-bodied enough), they are faced with losing their life like never before.

I think the author needs no justification for their apparent rage. It's refreshing to hear a voice we don't often hear. We are often raised being told these feelings of grief and rage are bad, unmoral, crass. That we should judge others who express them.

Here is one person's story you happened to come across. If you have trouble empathizing, remember, at best, we are all just temporarily able-bodied. You may do well to reckon with these experiences now, before your existential challenges are picked apart as inconvenient or uncomfortable for others.

Reading this, my takeaway was less about the pump and more about how every part of the medical system is disconnected from every other part.

There were some mistakes made but they were all pretty reasonable decisions. But the situation that caused this in order:

1. The support line for the pump won't suggest sending it to where you are because you say you have a backup plan.

2. The support line also isn't a doctor; they can't evaluate how good or bad your backup plan is, just how to deal with the pump.

3. You message your GP. But the message system doesn't connect you live to the on-call practitioner; that's a phone number that is not easily findable.

4. Your GP fills a prescription for the backup pen and sends it to the closest pharmacy.

5. The pharmacy takes the prescription, but they don't actually know if they can fill it until later. They also can't find a pharmacy farther than 25 miles away from the current location.

Each issue is reasonable by itself, but the end result is that the patient had to call 2 different people, go to a pharmacy, and still wasn't able to get what they needed. The gaps that could have (theoretically) been patched are:

1. Support could have known the possible workarounds. I realize that legally it could have been dicey, but the "fix" suggested on Reddit seems like something that could have been mentioned as an interim solution.

2. Your GP could make it more obvious which communication method reaches the office on a weekend.

3. The GP should be able to talk to the pharmacy to ensure they have the medication in the prescription.

4. The pharmacy should be able to search farther than 25 miles to find a medication for a prescription they've been sent.

It should be much more difficult for a patient to hit every edge case like this, especially when just being able to talk to each other would have stopped some of these.

> Each issue is reasonable by itself...

The problem of many hands - when responsibilities in a group that collectively does harm are divided between many people, who can be held accountable when each person individually acted reasonably?

I think organizations are, more and more, siloing roles in this way intentionally (or at least emergently), such that blame can only ever be collective if they do harm. Since it's so much harder to redress collective blame, this can be effective in avoiding consequence entirely.

the correct answer here is that they are all accountable. there is not some fixed quantity of blame to divvy up: each malfunctioning leg is responsible for the outcome.

They all contribute but they can’t all have the same degree of accountability.

I think the GP's point is that accountability/responsibility isn't a substance, it doesn't have to be conserved like energy or momentum. I agree with them.

It would be perfectly valid for the law to be that individuals don't need to unpick the corporate web of relationships, but hold any of those who contributed (above some size threshold) culpable for the whole injury, and leave the corporates to arm wrestle about how culpability is assigned between them.

I think it's mostly emergent. I can even point to a plausible mechanism, which is that if you think of an organization as a network of people and how they are connected together, you can think of "responsibility" as something that arcs through an organization like electricity and burns out whatever it courses through, prompting the creation of alternatives to avoid getting zapped the same way in the future.

It isn't completely inevitable, I think it's possible for relatively strong leadership to understand that the processing of responsibility through an organization is a necessary feature and people handling it without external forces conspiring to make it even more like that it will "burn out" a part of the org is a necessity and a good thing. But it's really easy for an organization to just default to burning out the path and evolving ways to avoid it in the future, and it is very motivated to make it happen.

Liability laws incentives play a big part. Good faith effort and patient care increase the surface are for attack.

Potentially. However, depending on the nature of the interaction, abandonment is equally a concern for a provider. If I'm treating or begin care of a hypoglycemic patient (and I'm not saying that in this case, such a thing has happened), then legally, I can be found guilty of abandonment if I don't transfer care to a higher level provider or conclude the course of treatment or intervention planned. I can't just say "I can't do anything for you, you're on your own."

I think we are saying the same thing. There is a line that triggers obligation and liability. If the location is abigious or the liability is extremely high, then there is incentive to error on the side of avoidance.

This might mean not taking a patient or class of patients into care.

THat's fair.

One other point to note, in general) is that depending on your provider type, avoidance may not be an option. On duty EMS cannot "avoid" a patient encounter, likewise with emergency medicine (though I'm honestly not sure whether immediate/urgent care is considered there, too).

>The problem of many hands - when responsibilities in a group that collectively does harm are divided between many people, who can be held accountable when each person individually acted reasonably?

"You can't justify hanging us all from the overpass" is the magic of the system.

And not just the medical system.

The pump manufacturer is at fault a few different ways. They have a responsibility to make pumps that don’t break, and they should probably issue a recall. They shouldn’t rely on the availability of a product they don’t supply as a backup unless they can guarantee somehow that the patient always has access. Their staff should ask where you want the thing shipped to and include options like receiving the replacement at a Fedex or UPS location. Their staff should be trained to ask “are you traveling or otherwise away from your home address?” And finally they should train staff on follow-up questions for a patient’s plan and confirm the patient has enough insulin on-hand to cover executing the plan.

Why is any of that their responsibility? Their staff did ask if they would be fine without the new pump and op said yes. They were fine. They could have gone to a hospital. They could have gone to Walmart and bought some insulin syringes for their supply

Hah, "make pumps that don't break". Well, when you figure out how to keep entropy at bay, please tell us, because that would be a cool trick. Pumps will break. It's genuinely amazing that the author went twenty-five years before experiencing her first broken pump.

The author screwed up. "I'm not at home and need you to send the new pump to my hotel." Problem solved. Yes, the customer service rep should have pro-actively offered to do that, but c'mon. That is a super basic thing to request, and people need to advocate for themselves. And that's not even "advocacy" in any difficult sense; it's a basic request that the company should have had no problem complying with. If they did refuse to send it to where the author was, then that would be grounds for an angry blog post.

On top of that, the author, clearly a functioning adult human, seems to have never had the imagination to ask herself, "what happens if my pump breaks; what is my backup plan?" Hell, that's an important question to have an answer for when you're at home, not just when away on a trip. Based on her words in this blog post, she clearly absolutely knows that this device is critical for maintaining her life. Devices break sometimes. You need a backup. Preferably two backups, for something as critical as this. This is just basic common sense.

One issue here which is obvious to me is that access to insulin should not be gated on paperwork. I can walk into any pharmacy in Canada and say "I'm diabetic and need insulin" and the pharmacist will sell it to me. They'll ask questions of course since this is not the usual path but my doctor's office being open will have no influence on whether I get it -- just on whether it's a 5 minute process or a 15 minute process, and potentially whether I have to pay myself or have it covered by insurance.

Is that true for every type and format? You can walk into walmart and get regular and NPH insulin over the counter, no questions asked. Newer ones require a Rx.

I do think that the US is obnoxiously conservative, and far more medications should be OTC.

Instead, you cant even buy kidney friendly cat food without an expensive Rx from a vet and tons of controls. Heaven forbit someone buy it without proper consultation. Think of the Kittens!

Edit: after some reading, it seems that Canada and US are outliers in the west for allowing OTC insulin. UK and Europe requires Rx for all insulin.

Asia is more mixed. Japan, Korea: Rx required. China, Rx on paper, OTC in practice. India OTC

Is that true for every type and format

Yes, OTC for everything. I've heard that some pharmacists ask more questions about types which are commonly abused by body builders but that's about the extent of it.

Funny story since you mention cats: My brother's cat was diabetic and prescribed long acting insulin which cost $250/vial. I looked it up and... apparently it was just relabeled lantus, because of course nobody is going to waste money on a separate manufacturing line. Ended up buying it from my local pharmacy, without a prescription, instead of using the vet prescription.

> you cant even buy kidney friendly cat food without an expensive Rx from a vet and tons of controls

There are a few law suits over this. Essentially, the claim is that they call it "prescription," but it has no prescription medications in it and isn't approved by the FDA to treat anything. So if you have an extra bag and sell it, this is OK since it isn't actually a drug, it's allegedly a price fixing scheme between vets and pet food makers.

You can in the USA too. Every Walmart in the country (and by god there are a lot of them) caries OTC insulin for $20-$25.

This is good info. I was going to say you can't in Indiana (where I used to live) but it turns out they changed their mind and it went into effect in 2021. Now (at least according to a current search) all states allow for at least a few forms of over the counter insulin (not the modern analogs, but it's better than nothing!)

True but that is the old Human insulin which is in some way not a drug the way the current modified insulins are. Thanks for giving people this heads up.

Also, to people in the US worried about having to go to the ER, Urgent Cares are the way to go with the kind of time the author was working with. You’ll be immediately seen, and not break the bank like an ER even if your insurance doesn’t cover it. They also should have all kinds of insulin at hand.

The thing that frustrated me most reading this was #1. And not even that the support person didn't suggest sending the new pump elsewhere (though they should have), but that the author didn't simply say, "I'm not home and need you to send it to a different address". I get the general point that she didn't want to make waves with someone who is going to be helping her deal with a condition that is life-threatening, but that simple sentence is not "waves", it's just... normal, reasonable communication.

This would have solved the entire problem, right there, immediately. The author would have been doing the annoying cartridge swap until the next morning, and then would have had a new pump waiting at their hotel. No more stress, no need for a blog post longer than, "my insulin pump was on its last legs while I was on vacation, but the company got me a new one in less than 24 hours and everything was fine and not particularly stressful at all, whew!"

I agree that #2 is reasonable. The insulin pump manufacturer isn't going to put a doctor on the phone for any random call to their customer service line. I do think they should have doctors on staff who can be escalated to, though, if needed.

#3 I'm not sure about. When I send a message to my doctors, the messaging system is very clear to warn me with every message I send that it may be several business days before they respond. If the messaging system in question has that same warning, that's on the author again, even if they were lulled into a false sense of on-call levels of response times based on past experience.

#4 doesn't feel reasonable to me at all. Insulin should not be gated by a prescription. I'm fine-ish with the idea that insulin can be available through a prescription (because then you'll likely get a better deal on it when your insurance company covers it). Downthread it seems that in the US you can walk into any pharmacy or Walmart and buy some forms of insulin without a prescription, for a fairly reasonable price. I guess the author didn't know about this.

#5 is not reasonable in the least. Any pharmacy employee should be able to search for the closest branch with insulin, regardless of distance, or be able to say "give me the closest insulin to these coordinates" or something like that. That's just absolutely terrible UX in whoever specced out and implemented that search function.

You don't understand the context: the issue was not that the pharmacy software somehow innocently can't (automatically) find a pharmacy farther than 25 miles away from the current location. It was specifically CVS prevented this since 2023 arising from their opioid settlement, to prevent "pharmacy-shopping", and to comply with with "Good faith dispensing" legal requirement under the federal Controlled Substances Act (insulin is a non-controlled prescription medication but the PBMs and pharmacies seem to widely apply these restrictions on search (and prescription transfer), which seems silly). Here's [0] one 2024 article (from RI, but whatever) listing all the new controls they imposed on pharmacists and doctors (among other things, transferring prescriptions across state boundaries triggers alarms). As you read this insanity, remember that the Purdue Pharma execs convicted didn't go to prison [1], at most got 400 hours of community service + fines. The Sackler family were still sponsoring the NY Metropolitan until 2019, and none of them were even criminally charged. Anyway, there's your root-cause. It should not affect insulin or other things but clearly the knock-on effect is it does.

[0]: https://www.risehealth.org/insights-articles/article/justice...

[1]: https://en.wikipedia.org/wiki/Purdue_Pharma

I have a fear that my CPAP machine will die one day while I'm away from home, such as vacation overseas or during a business trip. I literally no longer can sleep without it, I have anatomical sleep apnea (perfectly fit), but it's quite severe (79 AHI).

I once forgot it on a trip to a different state, and tried to sleep in the hotel but basically just had insomnia, as I could no longer pass out when I woke up from the apneas. Terrifying to think I did so earlier in my life.

Anyways, I lucked out as I went to craigslist and found one during that trip the next day.

But even if I was home, I'm no longer eligible for a CPAP since my last sleep study was roughly 13 years ago. Apparently they think my anatomy is magically improved since then, aka the US medical system wants their cut of my time / money to keep living.

So even my recent new purchases are from folks on craigslist.

It's wild they would rather me go through another sleep study when during my initial one they cut it short because I had such severe apnea (of the sort where I could have a heart attack without it). They hooked me up to a machine within around an hr or so. Now that I'm older, the risk is even worse.

If you haven't already, you should try making an appointment with a sleep doctor. Mine was able to write me a new prescription without a new sleep study, just a regular office visit. Make those insurance companies pay for what you are entitled to!

Happened to me once. Water chamber broke in checked luggage. I slept poorly for a few days far from home.

Thinking back later:

- I wonder if I could have sealed the area where the water chamber goes and done it water-free?

- I should have taken 1x extra parts for everything

- I have a complete second setup, maybe I should have taken that?

thing is, the 100's of times I didn't need to "overthink" things set my "over" and "appropriate" thinking levels and I thought i was ok.

as to the sleep study - it is LOTS less invasive nowadays. You probably take a device home with you, strap it to your body while you sleep and return it the next day. None of this "sleep in hospital setting" nonsense.

You’re correct! My mother had just such a study a few years ago and it was utterly convenient.

... much like we have the sketchy telehealth services out there, some online CPAP shops will have 'prescription renewal' services available for like $50-100.

If you already have an OSA diagnosis you don't need a new sleep study for a new script provided the doctor is just willing to sign off a new prescription for supplies.

I've had a CPAP part failure when I traveled - I used a Dreamstation Go with its special 12mm tubing. The tubing split and I had a hell of a time finding replacement 15mm tubing in the city I was in. I stopped into a random durable medical equipment supplier and went "heyyyyy can I buy a hose I'm really screwed right now!" and they just slipped me a new hose out the back door and shook my hand. Then I had to have a friend 3D-print me a hose adapter... field-expedient medicine is fun.

My current travel setup is now designed to accept as many standard parts as I can ('standard' 15mm tubing available at Walmart/Walgreens/CVS, a 'standard' CPAP mask, and the machine is adapted to use USB-C Power Delivery so I just need a 100W PD source or better to run everything (even battery).

There are a number of places you can get an online prescription for a CPAP/APAP, and they're not that expensive to buy outright.

I was able to get a new prescription for < $100, and bought a new APAP for about $600, no new sleep study required.

I found it weird to realise CPAP machines requires prescriptions some places. In the UK you can just order one next delivery from Amazon.

The US (as well as other countries) has weird hangups because there's not a lot of granularity in prescription rules and insurance won't cover things unless they require a prescription.

So patients and doctors fight to have things continue to be restricted so that their workplace insurance will pay for it.

CPAP machines require a prescription in the UK.

https://www.hope2sleep.co.uk/cpap-machines-sleep-apnoea.html

Amazon is breaking the law by shipping one to you. I suspect there is very little enforcement of this law, which is why Amazon is unknowingly breaking it.

I can't find anything to support the claim that they require a prescription from any authoritative source. The page you reference cites guidelines from an association that has no legal power. The relevant Act seems to only define a prescription regime for medication, and to only specify category classifications for medical devices for the purpose of certification, not restrictions on purchase. But I'm not a lawyer.

Which law is it you think Amazon would be breaking?

EDIT: In fact the page you linked itself points out that the "prescription" they are talking about is in fact not a prescription. "When the word 'prescription' is used for the purchase or rental of a CPAP machine, this is not like a standard prescription which GP's provide for medication."

If it's that crucial, then you need redundancy. A backup travel CPAP might be worth investing in.

This is literally the reason I'm still on multiple daily injections (MDI). I'm sympathetic to the author, I spent 50+ years without Type 1, and a few with it.

Just this morning, I ended up bolusing correctly, but then an emergency caused me to perform a lot more exercise than I had planned on. Then, bam, I'm paralyzed in bed, thinking about calling the ambulance, eating sour patch kids.

And believe me, when sour patch kids are an effective medicine, you have a disease that must just exist for spite.

So yeah, I feel like I can control conditions better with MDI, and can't seem to make the jump to a pump, even though it'd almost certainly improve my health and long-term survivability.

I'm having almost the exact same day as you today - except for the past 50+ years I have been t1d, and I'm back on MDI. I quit using a pump about 15 years ago. And it definitely improved my QoL just by not having to deal with all the insurance hassles. Removing that stress alone I think will extend my life longer than using a pump will.

> And believe me, when sour patch kids are an effective medicine, you have a disease that must just exist for spite.

Feel free to ignore below if spk's were just the closest, but there are better flavored non-melting options that also travel well.

I keep some Transcend gels (available from Amazon) on my nightstand and scattered all around my house. They'll "burn" if you need to suck down three or more back-to-back (I rarely need them, and when I do it's usually only 1) but they're a zillion times better than any candy with predictable (5-10 mins) time for the glucose to hit you - unlike candy. They recently changed the packaging design, so you'll need to snip a tiny bit off the corner (sorta like a tiny pre-cut) in case you need to open with the convulsions.

I always carry ice packs and a yeti cooler. I have some other carry rigs, but 99/100 times if you see me out and about, that's me: cowboy hat, wayfarers, and yeti cooler.

So I just keep sour patch kids all the time in my pack.

But I'm always up for something else, especially when the SPKs are in an "ick" season. I appreciate the recommendation. SPKs have an absurdly high glycemic index though and seem pretty predictable for me.

I really need to get proper glucose tabs and stuff, and be like a "professional diabetic"... but I'm working on time-in-range, not "did you swab with alcohol" at this point, lol. I just feel good that I'm not shooting through my clothes.

Sorry for the day, fellow traveller, hope you get things nailed shortly.

The best high-GI food I have found is Welch's fruit snacks. They are superior to glucose tablets: (1) Can be swallowed whole quickly and easily, or dissolved by saliva. (2) More concentrated, so you can pocket or pack more glucose in less space. (3) Can be compressed in a pocket or backpack without turning to powder that leaks everywhere. A packet of fruit snacks is 17 g of carbohydrate, which is small enough to catch moderate crashes and large enough when doubled to catch major crashes.

I don’t have diabetes, but I’ve heard from people with T1 that Welch’s work well for the reasons you mentioned.

When I browse the candy aisle at the store, I often wonder if certain treats tend to be better than others for administering glucose. In your experience, are there ever certain properties of candies that are more useful than others?

Ideally, you're looking for something that spikes blood sugar fast (i.e. high glycemic index). This is why e.g. Skittles/Sour Patch Kids/fruit snacks (mainly the kind that don't... actually have any fruit, lol) are a go-to for type 1s.

You're basically looking for something that's analogous: as crack is to cocaine, <low snack> is to sugar. Hits fast and doesn't last as long.

I have to admit, the fact that a 12 pack is the same as a case of energy drinks combined with my "goblin energy" doesn't bode well, haha.

I'm on a pump but always take backup insulin pens and needles when I travel, so that I can switch to MDI if needed. My QOL with a pump is so much better than it was with a decade+ of MDI.

I'm trying to convince myself. But then it's just one more thing that the medical community is gatekeeping (you didn't book your followup appointment in time, so you're treated as if you're no longer in life-threatening danger of hyperglycemia is a reality for me, because I have a hard time with medical appts).

We really need some version of "permanent prescriptions" for insulin. Not OTC, because then insurance doesn't cover it, but infinitely renewable, so you don't have to go see an endo just to continue living.

Yes, I used to carry scripts for insulin and needles in my wallet just in case. NY implemented all bbut mandatoery eprescribe so I feel I have to use a national chain so my script can be seen if I'm traveling. And yes the notion a script for Insulin can be stale is truly insane. Of course regular checkups are best especially with being insulin dependent, but with 2 million T1D just in the USA this is just bad for everyone.

I think I'm actually going to go talk to my congressperson/senator/anybody who will listen. It's such an insult, that I have to go to an endo, who in my case probably knows some technical ephemera better than I do, but has done absolutely nothing to help keep me alive besides write prescriptions.

Like didn't even warn me of the dangers of hypoglycemia. After I nearly went comatose one time, "oh yeah, we have glucagon you can get if you'd like a prescription". Which is cool after you've been passed out in front of a restaurant, with people looking at you like they're going to hit you with narcan.

One of my secret terrors is getting narcaned by a cop.

why not skittles...?

Skittles C4 is a Genuine Banger(TM).

Skittles candies are too grainy for me. I know they're a go to for many.

My wife is a t1d and has the same pump. It sucks their support staff has no idea how the thing works or what its failure modes are. My wife once had her x2 tell her it gave here a 40 unit bolis out of the blue . This would have killed her. While in the er support from x2 said something like "there is no way for it to do this .. you must be wrong.. are you reading the display correctly .." All in all the x2 plus dexcom was supposed to be a closed loop cgm plus pump. It rarely cuts insulin delivery on low blood sugar, or it does it way too late to matter .

also it didn't give here 40 units the pump failed .

That’s kinda why I don’t want a pump. I’d rather deal with it myself than have some garbage corporation cut every corner and save every cent they can on a device that is keeping me alive.

I’d rather have a glucose pump to be honest. I don’t need long lasting insulin so I don’t really need to care about dying in my sleep but lows scare me more than highs.

I mean I'd far rather have the pump than not, also a t1d.

I dont bother wearing it at night though. All my blood sugar does is decline overnight, and the pump isn't the signal that things are going awry, that's the GCM. The GCM will still signal the pump, my phone and my watch to wake me if I need to eat carbs (vanishingly rare) and the pump never changes my blood sugar overnight anyway as far as I can tell.

So I disconnect it, put it back on in the day so I can manage things while I eat food.

You don’t have dawn syndrome? Mine shoots up to 200 in the morning without food. If I don’t eat breakfast I take 5 units fast acting in the morning to keep the levels down.

I just don’t see pens as so much of a hassle that I’d give up the control of a pen for the convenience of a pump.

nope, just when i eat food. This morning i ate breakfast at 11:00, pretty much flat until then, mild slope upwards from 8am to 9am, but it only went from 6.2 to 6.7 then stabilised

For my wife, when on lantus and novolog ( no pump ) the overnights were always high blood sugars . The pumps definitely help , but in retrospect she also stopped eating gluten around the same time. The no gluten diet helped a lot .

Side bar having been around the dexcom for 10 years now . The old/original audible alarms were easy to understand. Low crescendo for going low , low repeats for low alarm and the reverse for high events. With the x2 and g6 i literally have no idea what the beeps mean anymore. This alarm fatigue is bad and i wonder if this contributes to the authors issue too. Was there some warning she missed?

Tandem x2 alarm fatigue is insane. Constant vibrations about every useless thing.

Mylife Ypso with CamAPS FX though is really good. Just does the job. Alarms are centralized in the CamAPS app and you can silence them - something that x2 never let you do.

Unfortunately this is my broad experience of medical systems across multiple countries and, weirdly, it strikes me as one of the few problems that isn't caused by rent-seeking in the healthcare industry, or at least only very distantly (minus the "don't want to remortgage my house to go to emergency" element, obviously).

Medicine has a curious form of parochial paternalism: doctors, endowed with complete responsibility for your body, bodies in general, and anything that might affect a body, will confidently make claims and assumptions far outside their expertise, and completely ignore the factors outside their purview. Their role is to be the calm and reassuring face of medicine, even at the expense of a necessary humility about the complexity of the systems outside their office.

The bulk of the actual care is done by various non-doctors with a dizzying and overlapping matrix of responsibilities, all but guaranteeing that important things get dropped or missed. But all of that is meant to be fine, because the doctor is the single responsible person who will catch whatever the patchwork misses. Only they don't, because they're doctors, not social workers, not healthcare administrators; they rarely see the full picture.

This leaves only the patient, who, while suffering and with no particular expertise, has to become their own doctor, pharmacist, technician, administrator and patient advocate if they want to receive the best care.

Of course, the best care usually isn't necessary for a good outcome, and if you have an uncomplicated problem with a standard solution, chances are the medical system works just fine for you. But when you slip off the beaten path you very quickly realise that the facade has so many cracks that it's as much cracks as facade.

I’m diabetic and found this strange for a few reasons. There’s a postscript in the blog post wishing death from diabetes on any diabetic who tries to point any of it out—so I’ll leave it at that.

I empathize with the author. I have severe panic attacks and getting advice from someone who has maybe had a little anxiety once is infuriating.

I wish you life from diabetes to cancel out her curse

The postscript in the blog post specifically wishes death on any diabetic who tries to point this out "from the perspective of Perfect, Unerring Care" via email: that's the "some percent crazy assholes" from https://www.smbc-comics.com/comic/2013-04-07. I think it's fair to post more appropriate commentary in a public forum, where it's aimed at audiences who don't already know everything the author does.

> If you were even thinking of emailing me to criticize me about what I did, I hope you die. Of diabetes.

Found your comment strange, did you read this incorrectly?

I don’t want to risk writing something I would decide to email later!

The author isn't talking about you.

The author is talking about the people who will inevitably email with explanations about how she's doing something wrong or things are not as bad as they seem or any number of other options.

I have asthma in a particular form, and when people hear that I get triggered by extensive exercise and hill climbs and that I have to take things slow (it's gotten progressively worse in the last two years after COVID) I will inevitably be told "well you need to exercise more."

Exercise can't fix scar tissue, bob.

Because that's what I'm fighting. I don't have a full pair of adult lungs. I have two lungs that got the shit beaten out of them when I was 3. Could I use some more exercise? Certainly. Will it magically fix my asthma? no.

Sounds familiar. I was often told "just use your inhaler, you'll be fine!". How I wish it were that simple.

Sounds like the author is talking exactly about them, a diabetic who could offer some useful feedback.

And sure, I guess you can wish painful death on anyone who shares your form of asthma and has suggestions, but it definitely says a lot more about you than them.

Many people ignore that there is a good chance they will end their life infirm or disabled and are therefore happy to shit on people with chronic (or even acute!) diseases and disabilities like that's a group of aliens that they will never belong to.

No worries though. As we say in Greek, "όλα εδώ πληρώνονται". Loosely translated, what goes around, comes around.

Exercise can't fix scar tissue, bob

Of course not. You need yoga for that.

Actual laughter was produced, thanks.

I have Cystic Fibrosis, with a lot of the same issues as COVID infections (scarred lungs and lost capacity), as well as additional fun things like a scarred pancreas (so I have both diabetes as well as difficulty digesting food without supplements). I could write a book with all of the unsolicited "advice" I've gotten over the years.

Some people are sure they have a magic case of a chronic disease that can’t be helped by anyone’s shared experiences. I used to think that about myself. It’s usually not true.

Anyway, I thought the curse was funny and I’m glad 1-2 of the other replies got that.

I get that there are lots of people out there who love to play armchair health advisor and have no idea what they're talking about.

But I agree with the GP that this is just strange. I'm not diabetic, so I don't have anything to say about management of the condition itself, but two things were absolutely nuts to me:

1. The author didn't ask for the pump to be shipped to her hotel. She gave an explanation for why she didn't ask for this, but that explanation doesn't make sense. And if she had asked for that, the problem would have been solved by the next day, with minimal fuss or extra stress.

2. The author seems absolutely flabbergasted and in awe at the idea that a mechanical device can break. Yes, I get that she used insulin pumps for 25 years without a failure, but c'mon. Everything and anything can break, even a medical-grade device. Based on her description of how many extra cartridges, syringes, insulin, etc. she brought with her tells us that she does understand the concept that things break and unexpected things happen. Why this huge blind spot around the possibility that the pump (or the CGM) could break too? How could she never ask herself the question, "if my insulin pump breaks when I'm not at home, what will I do for a backup?"

Neither of these points has anything to do with medical knowledge or understanding of how any particular medical condition is managed. They just seem like simple common sense to me, as a fellow adult human who lives on the same planet.

From the author's "here's what I'll do next time" section, it seems she's learned the right lesson and will bring a backup for her entire pump/monitor setup on future trips. Great! I'm glad. But it is absolutely bizarre to me that this isn't just SOP for anyone who relies on any piece of technology for anything, even for things that aren't life-threatening.

Just picture the smiling model in the advertisement; blithely and confidently referring to the device’s crisp screen while standing on the first-class deck of the 14 day cruise through Margaritaville.

I've been a T1 for 35 years. I use 20 year old insulin pumps so that I can have more control over them. I'm able to run open source software to talk to the Dexcom and the pump to control the insulin output, and tune it exactly how I want it. I started with OpenAPS, then Loop, then iAPS. I probably owe my life to these projects.

The FDA approved stuff is much more of a one-size fits all, and I understand why it needs to be that way. I just wish we had more open pump options in the US.

One other thing to try if you find yourself in a "need meds away from home" situation: Ask a local pharmacist.

Find a local pharmacy -- preferably not a mega-corporate chain pharmacy like Walgreens or CVS -- and ask to speak to the pharmacist. Tell them your situation. They can often call your regular pharmacy and get your prescription transferred to themselves temporarily over the phone without even getting your doctor involved (if they have your meds in stock). This works better talking to the pharmacist in person than on the phone, especially if you need a prescription that invokes DEA scrutiny like pain meds.

I recommend avoiding the chain pharmacies not because their pharmacists are bad, but because they are often hamstrung by corporate policies that won't let them do things like this without a lot of red tape.

Pharmacists are medical professionals. Use them.

Pharmacists also don’t need your doctor to write a prescription. They can dispense on their own authority. Scheduled drugs probably have made this more complicated. But if you’re looking for something that can’t get you high when abused it’s worth a shot.

For something like insulin a pharmacist can get you an emergency supply without calling anyone, should they see fit. Might be rare to find such a person though these days.

Bizarre intro to the blog. Been a pump user for 20 years, forever grateful to the technology that allowed me to live a pretty unrestricted life. Sympathy of course to anyone who's had it harder than I have ofc

I had an X2 (and before that, a couple of Minimed pumps), then I switched to the Omnipod. The Omnipod is a disposable pump you swap out every 3 days, so less of an issue.

However every time I've gotten a new pump, the diabetes educators always instruct you to have a backup plan, whether that's your insulin vial you may have already brought (even non-disposable pumps require you to swap out the reservoir every 3 days, so you should have insulin with you) along with old-school injection needles, or an insulin pen with needle tips.

Omnipod for the win. But, yeah, I have a bunch of disposable needles in my kit as a backup.

Even so, travel is stressful. My carry on is full of backup pods/sensors. But now that my insurance is being annoying and only filling a month at a time, I don't always have an extra...

I'm fortunate to have the income to support buying backups when I had insurance issues. During the Dexcom G6/G7 switchover and the switch to the Omnipod, I had just filled a bunch of G7s but the Omnipod didn't support it yet, so I ended up having to buy G6s out of pocket. Even with coupons from the manufacturer, it was still costing me $200/month.

When I lived there (or visit family), a Costco Gold card and store pharmacy visit can help a lot - it was around $150/mo for G6 last September. I'll switch over to G7 some time this summer. The Costco plan more than pays for itself using the built-in rewards program and rx discounts if you're paying out-of-pocket.

Also on the Omnipod, and I also always travel with both extra pods AND extra insulin pens (basal and bolus insulin). That way I can switch back to MDI if for whatever reason my pods fail or I can't use them.

Hey, this happened to me about two years ago! Forgot I was wearing my pump and walked into the ocean. Oops. I was on a Greek island during Easter weekend - the worst possible time and way to need emergency medical care.

One thing I now do is always travel with one of my old insulin pumps. They may be 5, 10, even 15 years old, but they take the same infusion sets and all they need is a fresh AA/AAA battery and they’re as good as new. Thank you to the medical devices industry for making some resilient AF kit.

Traveling without a quick acting pen and a long acting pen would never occur to me. Even if I’m traveling for a weekend I do (and take finger prick strips and tester). It means not having to worry about pump or sensor failures, which for me generally happen during exactly the fun activities I go on vacation to enjoy.

For anyone planing to go to Nepal with a pump: Beware of the (quarter-hour) time-zones. My wives ypsopump didn't play well with NPT (+5:45) at all.

We panicked quite a bit before we finally figured out we just had to set the connected phone to India Standard Time.

Excuse my ignorance: why does the pump need to know local time anyway? Or is it just shit design?

One thing I learned when I switched from manual injections to an insulin pump: the pump does NOT eliminate the need to carry injection pens, needles and a glucose meter with me when I leave my house unless I know I can get back quickly in case of an emergency. I always need to think about the worst case scenario, especially when travelling overseas.

I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.

Not every blog is written to be discussed on Hacker News. That being said I enjoyed it and found it illuminating. It could be a regional difference, but I’m from the South East US and didn’t mind the direct communication style at all. I much prefer someone to speak their feelings rather than being nice for the sake of nicities.

I don’t think it’s appropriate to wish ill on other people. When writing I think it’s just as important to consider the impact of your words as it is to express your ideas and emotions. These sorts of words can make people feel unsafe, and in extreme situations can inspire similar feelings in other people with similar problems. Maybe someone that might take more direct action than a blogpost.

I understand different regions have different communication style, but the murder rate in the US is too high for us to joke about these sorts of things.

I disagree, but I appreciate your perspective. I think it’s fairly clear that the author is using exaggerated speech to make a point and convey their feelings. The reason I mentioned regional differences is I often find myself having this disagreement with my west coast compatriots.

Ironic, because my experience of living in the south is that the fake niceties are deeply ingrained in the culture. Classic fun example: “bless your heart” basically means “fuck you”.

We are kind, but not nice. I generally find the west coast is nice, but not kind. Everyone in the south knows what bless your heart means, so it’s not really a veiled insult.

The weirdest thing is "fuck you" doesn't mean "fuck you" at all! I learned the hard way when I started to unzip :(

> Not every blog is written to be discussed on Hacker News.

It may not be written with that intent, but if you publish something publicly on the internet, you run the risk of some people, somewhere, discussing what you wrote.

That doesn't mean you have to care what those people have to say. Frankly, she shouldn't care what we have to say.

But if you put something out there, and someone reads it, they're well within their rights to have whatever reaction they want to it.

Re: "being nice for the sake of niceties", I agree with you, but her attitude toward the people who work for the pump manufacturer (who did nothing wrong, and in aggregate built life-saving devices so reliable that it took a quarter of a century before her first problem came up) is just not ok. "Beyond the pale" is a phrase that comes to mine, and I don't think I'm being hyperbolic here.

First, let's acknowledge that when the actions of some people lead to endangering a human life, it's natural to be angry about it.

Personally, when anger is justified, I feel more comfortable with people who clearly and openly express it.

I find them more reliable, more honest, and usually better people to be around.

By my standards, I'd even consider the style very mild, considering a life is on the line.

I would also consider it normal to be on the receiving end of such language if my own work resulted in such a situation. That would cause me to pause and reflect.

The intensity of feedback is information. If everything is bland, it's harder to know how important something is or not. Logic has a limit because you don't have all the parameters from the other side.

It works the other way around. The overuse of superlatives and day-to-day outrage is equally unproductive.

This is not the case here, IMO.

It's more than alright to be outraged, that's very different than it being alright to wish harm. That shouldn't negate anything else said in the conversation, but it's also just as much of the conversation to call it out.

> First, let's acknowledge that when the actions of some people lead to endangering a human life, it's natural to be angry about it.

The thing that's really bugging me is that this is not what happened at all!

"I'm not at home, please send the new pump to my hotel."

That's it! That solves the entire problem in 5 seconds plus the time to tell the customer service rep the hotel's address and verify it's correct. Yeah, there were some other structural problems that led to other dumb things, but none of that would have even come up if she'd done the blindingly obvious thing and had the life-saving, 24/7-required device shipped to her actual location. If anyone endangered her life, it was her, through her own actions.

She really crossed the line for me by wishing harm on the people who designed and built her insulin pump. What the hell? They've done nothing wrong. Yes, her pump was beginning to fail, but 1) it was still limping along with a workaround and she wasn't in immediate danger (and if it did fully fail, she said she was within an hour's drive of an ER at all times, which she felt was fine), and 2) she had never had a pump problem in twenty-five years, which is an amazing testament to the reliability of these devices. The people who work on these things deserve a freakin' medal, not bullshit like "the people who design, sell, and service these machines are both keeping me alive and also my mortal enemies".

It honestly might be helpful if we framed more conversations that way, when talking about the creeping dependencies on tech firms that fill our lives.

Those of us without a medical dependency are lucky that catching one of the many tech failures modes won't actually kill us - but you'll still want to throttle more than a few folks if you ever have to recover from your Google/Apple ID getting banned, or PayPal running off with all your money, etc.

This isn't, like, TikTok. It's a firm that provides a transformative improvement in quality of life to diabetics.

(Not above criticism, of course, but weird to lump them together as insidious "tech companies").

“Creeping” from what? More primitive medical technology that saved fewer lives?

The medical technology isn't the problem - the profit motive negatively affecting its continued operation (or not) is (and this is not just the technology firm, it includes the insurance company, the hospital/pharmacy operators, etc).

You can't have a reasonable customer relation with any corporation when you are a captive audience - let alone one when they could kill you at any moment, whether from negligence or plain indifference.

This plays out in less-lethal versions all over tech. Do you dare redeem that Apple Gift Card your aunt gave you for your birthday, knowing that Apple might nuke your whole digital identity from orbit[1]?

[1]: https://hey.paris/posts/appleid/

Fortunately, having a discussion does not appear to be the goal of this blog post. The author is relating a story including their feelings on the matter. It’s not really about us, unless you’re working for a pump company or could possibly address the structural issues that have led to this situation.

Honestly, I found it illuminating. I don’t depend on a machine to keep me alive directly, but it made me think about how much I would resent dangling at the end of a line held by a company that would cut me off if investors thought it would make them slightly richer. One that cuts every corner they can, and doesn’t actually care about you. I imagine that resentment over years, a quarter century of things getting worse on the “caring whether you live or die” front, might lead to the feelings the author expressed.

It’s pretty clear that discussion is not desired, unless you have the cure for type 1 diabetes in hand before you send the first reply.

Retired manager, been in my share of tense meetings.

I appreciate it when someone recognizes that they're struggling with conflict and emotion, and lets me know that they know this. It's better to acknowledge the emotion and put it on the table as its own valid topic of discussion, than to tiptoe around it or try the "I'm sensing that you're dealing with some internal conflict" approach that risks embarrassing them or worsening it.

The choice is whether to acknowledge the emotion, not whether to have it.

There are several strange things here.

> Flagstaff did not have any insulin for me.

This seems… impossible. They could be out of a specific SKU of Lantus pen, but that’s an entirely different thing from a pharmacy not having any long- or intermediate-lasting insulin. They probably had Lantus vials, or other glargine biosimilars, or NPH insulin or dozens of other types of insulin.

> the Tandem tslim X2 requires the user to "prime" the pump tubing with 10 units of insulin every time the pump shuts down or the cartridge is replaced.

This happens with every pump in one way or another to avoid getting air instead of insulin. There is no pump on the market that doesn’t involve wasting insulin somehow (though getting leftover insulin out of Minimed pumps is much easier)

> To tell the truth: I do not even know how to use the pen. I have never needed to do this in my life.

> I've lived with diabetes for 27 years and I've been on pumps for 25.

The pens are just a vial and a syringe combined. If you’ve given yourself injections, using the pen is straightforward.

> Foolishly, I did not bring the backup-of-the-backup. I never have!

For anyone not familiar with diabetes management, these two sentences are the failure that happened here.

Insulin pump failures are very rare, but the only way they can be dangerous is if you choose not to bring your medicine with you. Lantus (the thing OP is prescribed but does not treat as necessary medication) is given to diabetics for this exact situation. The pen is a bit bigger than a Sharpie. One of them can keep you alive for a week or more. There is no valid reason not to keep it with your other insulin.

The lesson here has nothing whatsoever to do with insulin pump brands. OP will never get a pump that can’t fail but thankfully “what to do when a pump fails” has been an elegantly solved problem for many, many years.

> To tell the truth: I do not even know how to use the pen. I have never needed to do this in my life.

I truly do not understand how one could have T1D for 27 years and still be alive with this attitude. Don't get my wrong, I'm happy she is! And maybe that's just my own limited experience of managing my foster daughter's T1D for the past year talking but... Man, this year has been a rude education in how many ways all of these necessary-for-life pieces of equipment and medications can go wrong and how easy it is to get into a life-threatening situation.

Going more than 30 minutes from home without extras of everything (Dexcom, glucometer, fast-acting, long-acting, glucose tabs, glucagon) is completely unthinkable.

>> the Tandem tslim X2 requires the user to "prime" the pump tubing with 10 units of insulin every time the pump shuts down or the cartridge is replaced.

> This happens with every pump in one way or another to avoid getting air instead of insulin

The tandem doesn't allow you to finish priming before it's used 10u. Even if you know it's fine, and can see drops of insulin coming out immediately, you've got to wait until it reaches 10u first. I took the author's complaint to be more about that.

I've only had my battery die a couple of times, and I use a fresh line every cartridge, so I've only found it mildy annoying. If you're American and often reusing them, I could see it being more grating.

I guess if somebody is on humalog and is swapping out cartridges every 48 hours like the manufacturer suggests that could be a bit annoying. If somebody is on novolog (and takes less than a hundred units/day) it’s generally pretty easy to match cartridge duration to infusion set duration 1:1, in which case that 10u of wasted insulin gets thrown away when you discard your infusion set, just like any other pump with tubing.

It is insane how weird and complicated it is to get unscheduled medical care.

> The woman on the other end of the line asked me, "Do you have a plan to continue your insulin pump therapy?" I said, "I guess. I will have to call my doctor and get my prescription for long-acting insulin moved to a pharmacy in Santa Fe." I don't know what she would have done if I'd said "no."

Just a PSA for anyone dealing with medical support lines of any kind in the USA. When they ask whether you have a plan, no matter what topic you are talking about, they are not just making small talk. They are at a decision point in their script - a nice little diamond on a flowchart with different paths for "Yes" vs. "No." Your answer will change path of the conversation.

The best move is to give a thought out, honest answer to that question.

Some random thoughts on this situation which I have been in as well.

- bring lantus pens

- bring a backup pump. If you've been on a pump for more than 5 years you've probably gotten a new pump because the old one went out of warranty coverage. I have 2 old pumps which still work in an emergency (although without closed-loop - they will still do basal and bolus).

- regarding being forced to prime 10 units of insulin out of the tandem x2 just to use the existing cartridge when the tube is already full of insulin. This has always annoyed me as well. If you are in a pinch or really don't want to waste insulin what I've done is take the needle part off a two-part syringe (assuming you have that kind) and stick the end of the pump tube (the coupling part of the pump site) into the hole of the syringe and prime directly into it. Then you can put the needle back on the syringe and inject the primed insulin back into your insulin bottle.

Amen…Bring a lantus pen.

Lantus alone is going to keep do a majority of the work from keeping going into DKA.

Insulin pumps are going to fail. They are mechanical devices. Batteries fails. The connected phone can fail. At some point in a diabetic lifetime…it is going to break.

The entire reason most patients are taught with subcutaneous insulin is at the start is that there is good chance complex tech will break.

As healthcare providers we get this - we see these patients on the weekly. As patients you may only get experience it once in your lifetime…. Technology will always break at the most inconvenient time. You need to have a back up plan with your health. SQ insulin is the back up plan.

I always have a backup, when i travel even a 2 hour drive away from home.

I take a spare sensor, spare pump (Omnipod), spare insulin, and an insulin + dextro.

On vacation, I take a spare phone, in case my phone that manages pomp and sensor breaks down.

It happened already twice on vacation in the past 5 years.

I use contact lenses. Just beleive me, there are days I go out without them just to get used of it in the case I lose them. Everytime I leave my home, I have backup lenses. And not seeing is for me just a inconvenience, not more.

When my life would depend on this, I would NEVER accept to only have a complex electronic device keeping me alive when I dont understand it and can't repair it in the dark with my swiss army knife. It's a really honest text, but the anger and helplessness is just self implied. It's crazy how people today are so unable to manage their life without electronics.

Uh, okay, she didn’t advocate for herself on the phone and darkly alludes to not knowing what could have happened if she’d told them she wasn’t at her home and needed her replacement pump sent to another address. I think they would’ve sent it to the hotel without a problem. Her takeaway is that she should have been “meaner” on the phone, but I think just honestly expressing her situation would cover it.

And “I don't think it's possible to live without resentment for the technology keeping you alive.” This plus all the stuff at the top of the post about how she hates manufacturers of insulin pumps and she’s trapped. I have lived in a very developed country, and I currently live in a least-developed country. I am pretty grateful for the technology that keeps life in the developed world safe and comfortable.

Blaming her is not the right call on this.

The technology is absolutely amazing for the quality of life it’s given us, especially those with medical conditions, but the failure of technology in these scenarios can lead to hospitalization or death.

The customer care line requesting information about a plan means the patient’s care in a will-be life-threatening scenario was not prioritized.

Deprioritizing patient care when death is a possibility is a grim outcome regardless of where you live.

I didn’t take their comment to be about blame, it’s more about a pragmatic view of what’s going to be more effective for an individual. Sure, you can tell your diabetic daughter that the world should be one way, and rant and rave about it all you want, but none of that will keep her alive.

It means the exact opposite. It is like when the tow truck operator asked if you are stopped in a safe location. If you say you have a backup to the pump, then they know there is negligible risk. Its why they asked.

The problem is that when she was asked if she had a plan, she didn't give a thought-out answer. If she had said "no" -- which at that point was actually the truth -- it likely would have triggered something in the customer support rep's script that would have fixed the situation damn-near immediately.

It's annoying that this is how it works. It would be great if the customer support rep could be better trained, akin to a medical technician's knowledge at least when it comes to the medical condition at hand. But that sort of thing is just not reasonable to expect in the world we live in. Someone with a chronic condition needs to advocate for themselves. Even just "I'm not at home and need you to send the new pump to my hotel" would have likely fixed the entire problem.

I don't know if this is about "blame" or something else entirely. To me, this was very instructive and reminded me that we need to take charge of our own care. Even though it sounds like the author was never in any real danger (by her own admission), this entire situation could have been avoided with a single sentence, one that's incredibly reasonable and not difficult to say.

(I'm also baffled by her incredibly hostile attitude toward people who make insulin pumps. I can absolutely understand being angry at the idea that you need a piece of technology made by a third party in order to live. But calling the people who make that technology -- technology that has worked for her for 25 years before the first problem came up -- her "mortal enemies" crosses a line for me.)

This is a very large fear of mine but we've been lucky to have extra supplies in almost every T1D category. People seem to forget that most diabetic supplies in the US are gated by insurance who make it extremely difficult to create a small stash. We bring extra ( most that i had to cash pay for ) insulin, long acting , CGM's, multiple blood glucose monitors. We also recently were able to bring my sons old X2 with us on vacation. So we have backups for everything.

Also use facebook groups if your in a situation like OP is in. I could post on my local T1D group looking for long acting and could get 5-10 offers.

Fellow T1D here. The same pump tslim X2 also failed on me 3.5y in, also on holiday (I was in Morocco). I had backup pens with me so no big issue.

I've now switched pump to my Ypso mylife with CamAPS FX algorithm. It's so much better than the tandem! Much fewer useless alarms, the algorithm is way better. Downsides are manageable: reservoir is only 160 units (instead of 300) and one needs phone to be always on (good motivation to keep it charged).

It's only tenuously related to TFA but recently I've been trying to move almost all of my recreational internet browsing to the indie web. I've been populating freshrss with the ultimate aim being that I can mostly read everything on airplane mode.

Anyway I was reading through the newly published articles on Bear's discover tab and found this article on there with no upvotes. It's the first time I've seen something go from obscure to frontpage HN

I'm really sad to say: insulin is not expensive in any other country except for USA. I don't know what you guys and gals do there in the new continent, but please work out on it a little bit.

https://www.rand.org/pubs/articles/2021/the-astronomical-pri...

This is why I was uninterested in joining a clinical trial for one in the 80s. But to travel w/o backup blood sugar testing and spare insulin and needles is suicidal. For any T1D here, walmart has dirt cheap glucose packs in tubs or 8 and bottles of 50 for very cheep.

i have multiple family members with t1d and having experienced their stories i expected this blog to be filled with anti-patient practises, planned obsolesence and the like. however, i was relieved to read that's not the case.

stories like this is the only reason why i still on pen. traveling a lot and all i bring with me are 6 pens, 3 pack dexcom, blood strips and a ton of needles. but yeah feel with you!

>What it's like to have the machine that keeps you alive die while you're on vacation

If the machine literally keeps you alive, why do you not have a backup?

I dont know if you are reading this but you should see if your insurance will cover an omnipod. it is a million times better than the insulin pump you are using

This is a terrifying and illuminating read.

I’m also a type 1 and I force myself to use pens every few months so I don’t get jumped like this. We need implantable insulin pumps again so bad. Also fuck tandem, I’ve moved to Omnipod (which has its own issues, but better than tandem).

Pro tip: get a Rx for your pens sent to a national pharmacy that your insurance supports, but don't fill it. That way, if you have this issue while traveling, you can just walk into a pharmacy and walk out in half an hour with what you need

Or just bring a bunch of disposable needles with you and draw from your vials that you already have for filling your pump.

you don't fill your pump with basal insulin

Pro-pro tip for T1d's: If you relocate (or visit) the EU and get a Rx - IMMEDIATELY FILL it once as soon as you get it - otherwise it could be invalidated after 15 days - and it won't be valid when you try to use it the first time.

>I don't think it's possible to live without resentment for the technology keeping you alive.

> Somewhere in the back of my head, something is always screaming: it's fucking stupid that I have to do this at all!!

I think it all comes down to this attitude. Interesting with the self awareness in other parts of the article.

I too get frustrated when I feel vulnerable and helpless. What helps me is reflecting on all the capabilities i actually have. They might feel less bitter and dependent if they try injecting manually. Then a pump isn't a life necessity, but a convenience.

I'm going on vacation. I have a life critical device I depend on for said life. What would happen if said device failed? Like many of the other comments, surely a diabetic would be familiar with the risks? Apparently not.

I stop reading when the first paragraph contains a profanity.

Ooooof. I don't want to be too critical, because I'm not the author, and not in their situation, but two things:

1. Your insurance will pay for an ER visit wherever you are (in the US; the author mentions having a California-based ACA plan). Assuming your plan covers emergency services, they're required to cover ER visits at in-network rates wherever you are in the US, even if the hospital/staff are out-of-network for your plan. I'm not sure if the author is unaware of this, or if the issue is that their insurance will only cover a percentage of emergency care costs in general, and the remaining percentage can of course be a lot of money. I assume it's actually the latter, but I think this is good information for people to have in general. If you have an actual emergency when you're not near home, get yourself to an ER.

Which leads me to one caveat: don't take an ambulance if you can help it; so many ambulance companies[0] in the US do not take insurance, or engage in other fucked-up shenanigans that mean you could be on the hook for thousands of dollars for a 10-minute ride to a hospital.

2. I get not wanting to make waves or get angry at a customer service person who you need to be on good terms with for a piece of equipment that literally keeps you alive. But! "I'm not at my home address and won't be until $DATE. I need you to overnight the new pump to a different address: $ADDRESS." If they balk, ask to speak to their supervisor. If they won't do that, hang up and call back; often getting a different person on the phone can do wonders for your success rate.

[0] Yes, many ambulance services in the US are run by independent companies that aren't even affiliated with the hospitals they might take you to, instead of being run by a hospital or other local municipal emergency services. When you call 911, you never know who is going to be dispatched to respond to your call.

Your insurance will not necessarily pay the full cost of ER visits. Some plans have co-pays in the range of hundreds of dollars. High deductible plans might make you eat the full cost if you have not already had a lot of medical expenses this year. Just having insurance does not mean you won't get destroyed by bills... all it means is there is a max limit on the destruction.

Ask us about the 27 phone calls and TEN DAY DELAY AS WE REACHED OUT TO FIVE CLINICS to get a mohs surgery scheduled for my son, 23, in the bay area, with diagnosed and biopsied melanoma.

The USA medical system is really fucked up. Finally a Canadian in Vancouver hooked me up with a plastic surgeon while on vacation who agreed to end his vacation early and do the surgery in Campbell, CA ( South San Jose )!

My aunt had her American Express die on vacation and they had a new one in her hands, in her hotel room, at 8 am the next morning.

Priorities. Sigh.

I wonder if it would be possible for a business to exist that was like super double ultra premium T1 diabetes support. Maybe it's really expensive and not many people can afford it, at least at first, but it'd be like you can call up an on-call desk any time, day or night, 24x7x365, and immediately talk to somebody who can pull up your full situation and history and do anything necessary to fix any possible problem. Get anything you need shipped to you anywhere next-day, get you premium service at any local pharmacies or hospitals, already set up to do exactly what you need before you even get there, sweet-talk the tiny local mom-and-pop pharmacy, produce all of the right papers and work the right angles at the huge national chain pharmacy, track down the one that actually has or can do what you need, etc. What would it be like if you were able to actually throw enough money at the problem to create a perfect worry-free experience for at least some people.

It sounds possible, but insurance probably won’t cover it. So this super double ultra premium T1 support will probably be only for the people rich enough to not need insurance.

> I know that going to an emergency room would have cost me an insane amount of money

I just don’t understand how Americans put up with this shit. I live in a country that only has private healthcare, and the idea that you can be insured and also that an emergency room visit can be expensive rather than specifically what the insurance is meant to cover is nuts.

If vulnerable individuals don't "...put up with this shit," they get sick and die. To understand this, you have to understand that there isn't usually an alternative.

I think OP means more why politics hasn't changed this. Even at state level there's plenty of stuff that can be done about this but seemingly no one cares enough.

Vulnerable individuals are often the ones covered by Medicare/Medicaid. It’s the middle-class this seems to affect.

> also that an emergency room visit can be expensive rather than specifically what the insurance is meant to cover is nuts.

This part is basically a matter of degree. If I have full coverage on my car and total it in a single car accident, insurance will replace it, but I have to cover the deductable ($500-$2000 usually).

If I go to the emergency room, health insurance will cover it, but there's a deductable of like $50-$500 depending on the plan. That's a lot of money if you could have dealt with your issue at urgent care (usually half the deductable) or later at a GP. It's not a lot of money compared to what the ER bills your insurance for most things. Having doctors, nurses, pharmacy, and support staff onsite 24/7 with backups on call in order to handle 'anything', proof of ability to pay not required, is exensive and the costs get placed on the users that can pay.

That's not to say it's not shit. My favorite is when you go to urgent care, but they can't do whatever it is you need done, so they send you to the ER, and you get to pay the deductable for urgent care, then the deductable for the ER, then get the mailer for your insurance 'did you know, you can go to urgent care instead of the ER?' ... My next favorite is when you show up to urgent care at 10 am and they tell you they're all booked for the day.

But, I don't know what we're supposed to do if we don't like it. Refusing to participate doesn't make the system better. Half of the country votes for a party that's unwilling to make things better; the other half votes for a party that's might try once a generation. The only hope we have is to qualify for Medicare and make it to Medicare age, and live somewhere where there's enough Medicare accepting doctors to take care of things at that age.

Just use insulin pens or even just vials + syringes to manage your BG? I'm T1D as well with a 5.7 a1c. You don't "need" a pump and in some ways pumps make you ignorant of your own disease, like people who "need" GPS to navigate their own towns.

Today in the US in 2026, if you're blindly trusting fully enshitified corporations to keep you alive, I assure you that you're not going to have to worry about broken insulin pumps for very long.

I stopped reading where he just googled what can be wrong with his life support medical aid instead of calling some kind of support line.

The author is a woman. She does call a support line during the course of all of this. The support line was fairly unhelpful.

the support line did everything she asked, and explicitly asked if she already had a backup plan in place, to which the author said "yes".

the author admits to not even asking for the pump to be sent directly to her.

the author admits to even ignoring the internet advice to call support, then gets mad that she wasted insulin while doing so

"I will probably also be meaner to everyone who gets me on the phone in the future during an emergency. I was trying specifically to not do that, but I suppose it's helpful to be mean when your medical equipment is failing."

advocating for yourself is not being mean

No, but it feels that way if you're an agreeable people-pleaser. (This is, of course, a bad habit, but it's a common one, and it's not one that merely acknowledging will divest you of.)

Lots of mean things she writes in her blog post for a people pleaser though.

Like, I get it, but the blog should then be about how being a people pleaser almost killed her and not how bad support was at reading her mind.

It is.

> Admittedly, I did have an opportunity to cause a fuss which I did not choose to take […]

> This was dumb of me. I should have caused a bigger fuss. If I'd bitched to more people and made more phone calls and […]

> So I escaped this extremely risky and stupid problem - partially of the pump's making, partially of my own creation - with zero consequences other than the fact […]

> I hope that you can understand why - even when I made the situation worse by not throwing a big enough fit - I held in my heart […]

The blog post says things other than "this was all my fault" (which, channelling Nancy G. Leveson, is not something we should ever say about the failure of a complex system), but it does very much say what you say it should say. The vast majority of the "mean things" in this blog post are polite descriptions of the facts; the remainder are rather mild expressions of frustration, plus one death wish against a hypothetical someone exhibiting an extremely obnoxious communication behaviour.

I’ve called my father’s insulin pump customer support number once before and the medical advice they gave us would have endangered his life if I had carried it out (according to his GP, whom we called after to confirm).

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