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.
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
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 .
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.
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.
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.
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.
> 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.
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).
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.
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.
>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 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.
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 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.
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.
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!
63 comments
[ 3.0 ms ] story [ 72.7 ms ] threadAnd “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.
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.
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.
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.
[0]: https://www.risehealth.org/insights-articles/article/justice...
[1]: https://en.wikipedia.org/wiki/Purdue_Pharma
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.
Priorities. Sigh.
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.
> 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.
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.
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.
Skittles candies are too grainy for me. I know they're a go to for many.
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 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.
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.