Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange.
I always have a two month supply of insulin and a back up of lantus in case of pump failure in the refrigerator, but in the case of power outage with the cause being widespread, insulin would only last one month. It depends on the scenario.
I am interested in what would be in an emergency kit for T1D that we don’t already have on hand.
Yes, but. As your life lengthens, the number of Rx’s lengthen, and the size of the box lengthens, and the closet space taken up lengthens. Ugh. ¯\_( ͡❛ ︵ ͡❛)_/¯
Probably should. Insulin pens are on fridge and wear Dexcom but always carry meter and test strips in purse for back up. So if grab purse and pens should should be quick
Hm. I’m curious what kind of restriction you’re dealing with. Standard method lots of us relies on the fact that insulin usage is extremely variable. So Dr prescribes for the maximum you might use per day and you end up ahead at the end of prescription period. Over time you have a back-up cushion in your fridge. This has been my method for 40 yrs under all kinds of different insurers and Drs. Does your insurer impose some kind of cap and what is it based on?
I typically use one and a third bottles of insulin each month to fill my pump. Like William Bennett my endo provider writes an insulin RX for two bottles a month so I have back-up and over time I accumulate extra insulin. Thus I am always ahead of the curve and not in danger of running out. With Dexcom, it depends on how many extras I have on hand and if it is at the end or beginning of the next 90 day order cycle.
I keep a well stocked emergency preparedness grab & go kit handy within easy reach in my diabetes paraphernalia supply closet. I keep a Frio ready packed with insulins and Victoza in the butter compartment in the fridge so all I need to do is grab it on the way out of the house
I’ve thought about this from time to time, but am unsure where I would keep it with limited space. Currently my supplies are all in one closet, and my insulin in the refrigerator. I figure, in an emergency, I can throw it all into a few bags, and go. But, it is better to be prepared ahead of time.
Pharmacy mistakenly filled my novo vials for Omnipod with pens a few months back. Couldn’t take them back and told me to just keep them. (and reversed the charge since it was their bad. So I’m good until expy in 23 and that’s my emergency supply of insulin for now. I also have back up vials that would last a few months, but for Omnipods themselves, it depends on when next order is due. Even without an emergency, I generally only have a few left when it’s time to re-order. Stupid healthcare system doesn’t believe in backups. (Thank god I learned how to extend the Dex – it gave me a bit more of a safety net on those)
I keep a kit for travel with extra supplies. Add to it depending upon the length of the trip. Insulin is in fridge, so I get that separately. Otherwise, like others, all my supplies are in one space, so I can “grab and go” if necessary.
I try not to look on the gloomy side of things but I suppose there is a need to plan ahead in the event of a disaster or something like that happening.
I dunno if I’d call it a “kit,” but like most (and all should), I have my zombie apocalypse emergency-reserves stash. I learned early on that, since insulin usage is not fixed, you should have your Dr prescribe for the maximum and save what you don’t use for backup. When I’ve got a few months’ worth I hold off re-ordering until I need to replenish. I also have a script for Lantus & Fiasp pens (1 box each) in case of pump failure. I’ve only resorted to the Lantus once, but the Fiasp pens come in handy all the time.
As for pump and CGM supplies, same thing, only it’s a little trickier to stay ahead. For Dexcom, doing a few sensor restarts per order period (3 months) gets me a backup cushion of 3-4 sensors. For insets/reservoirs, I ALWAYS put in for a replacement when I have bad sites or rip outs, which they’re generally happy to do. I also try to order ahead so new ones arrive while I’ve still got 2 weeks’ worth on hand. Medicare makes you to certify that you’re down to 7 days before you reorder, so here’s what I do to deal with that: I LIE. Shamelessly and without a second’s regret. It’s not like I’m re-selling the darn things or using them for fun and games. All kinds of reasons why you might run short and be pulling your hair out (or having to resort to Lantus), so I make sure I have at extras of those too. Over time I’ve built up to about three months’ worth, so I’m about one full order ahead.
You describe well my strategies for ensuring I always have a cushion of all necessary supplies, the trickiest being, as you say, Dexcom. For a while each quarter my cushion for sensors is typically down to three weeks or so. I used to go on overseas work trips for a month or more, and ensuring I had enough supplies for those taught me how to game the systems successfully.
I answered other because strictly speaking I should say No, but the two small kit containers – I have (one for Fiasp and one for Tresiba) – I use every day contain enough supplies for a week or so, and it would only take a few minutes to throw together enough for a month or more including sensors for Dexcom and chargers for receiver and phone. But gathering enough other medications etc might take a bit longer; but probably not more than half an hour, and the only serious evacuation risk where I live would be a category 2 or higher hurricane, for which we always get much more warning than that (no flood or fire risk where I live, and I cannot think of any other emergency or natural disaster which would result in need to evacuate).
Again, since it’s “as needed” insulin should be prescribed for the max you might need and it’s pretty easy to get a “cushion” that way. DME supplies are harder, since usage is more predictable, but even there there’s a degree of uncertainty. E.g., my pump insets are figured at a rate that usually exceeds actual usage. So if I reorder at the earliest possible time I can build up a cushion that way. Plus ALWAYS put in for a replacement in the case of a pull out, bad site, failed insertion–anything along those lines. Not sure about Omnipod, but suppliers are usually pretty generous about that. Same goes for Dexcom. Always get a replacement for sensors that don’t last the stated period, whatever the cause (they’ll replace even if it’s just the filament hit a spot that hurts). Occasionally restarting a sensor also helps you get ahead a few sensors. Not advocating breaking the rules, but if those rules, rigidly followed, put you in a place where you’re have to be anxious about running out of what you literally need to stay alive, I think you’re entitled to interpret them as liberally as possible in your favor. This isn’t about having fun, it’s about having what you need to be secure about your own safety.
If you’ve been in a natural disaster, you will most likely be prepared for another one. Il survived the night of the tornados in Grand Island, NE on June 3, 1980. I never want to be worried about insulin, food and supplies ever again. Ever.
I had one. I kept having to borrow from it so it’s not complete. I have a “ go bag” in case of wildfire, but I needs more pump supplies. Hard to get extras…
We have a kit we take camping or when we travel and that is also our disaster kit. Since we use it on vacation the supplies are rotated out the only thing we have to grab is insulin and our standard is to grab a box of each (lantus & novolog) this would give her a months worth of supplies.
As others have mentioned, I do carry extra when traveling or away from home for extended time periods. Insurance will not allow you to request “extra”, so that is a bit difficult to navigate. One would think they would allow for at least one month “extra” as a backup or for emergencies. That only holds true for some things (insulin RX is easier to write for extra) but not the DME (OmniPod and Dexcom). And to pay out of pocket for “extra” just is not feasible for most people.
I agree 100% you are very correct. About the Omnipod and Dexcom prescription issue. I barely get my next 90 day order before I run out. I am on my last one when they arrive. I just have a blood sugar machine to check manually and some needles to inject insulin. Not sure how that would work with fast acting insulin.
I wonder what it would take to convince the powers that be to allow us to get a back-up supply of pump supplies. Even one month’s security would allow me to give up that nagging worry. Blood sugars might even respond gratefully!
I have an emergency kit in case my pump fails like injections, and glucose tabs. And I always have extra short acting insulin. The long acting is tricky for me to use. My body does produce a little insulin (based on a test). And I do have extra pump supplies, and batteries about 2 to 3 months worth.
I do have a go bag, but I would have to be able to grab my insulin. It has to be kept refrigerated so I don’t know how I would keep it viable if I stored it in the go bag.
I have a backpack in a closet that contains about a month’s worth of diabetes supplies, water, and a change of clothes. I have a separate box with my other prescription meds that I could dump in the backpack quickly along with unopened insulin vials from the refrigerator. Having been evacuated ahead of a wildfire and unable to return home for a week, I like to be organized ahead of time and not have to prioritize what’s needed as I’m rushing out the door. (Thanks for the reminder to rotate my supplies.)
No, and in an emergency evacuation I’m sure all of my time would be spent trying to round up Sunny Cat. My supply of Novolog vials is stashed in the refrigerator. That’s normally not an issue, but in an emergency situation the power often goes out. There’s just so much stuff, finding an additional space for a container to hold extras is difficult. I know it’s something I need to do.
My Endo had me put a Go Kit together early on in COVID, in case I had to be hospitalized. I decided to maintain it since, and I rotate stock every 3 months with a reminder in my calendar. Special kit in fridge, too. Just grab-n-go.
I use a pump, it would be extremely difficult to put all the stuff I need in a GO bag long term. If I am home when whatever is going on happens then I could put supplies in a cooler and a small bag. If it is a long-term issue then I would have to find the stuff I need or possibly just die.
All my supplies are in a single drawer so could be thrown into whatever bag or pack I’m using to carry essentials – would just need to grab and add my stash of insulin vials – all possible within a couple of minutes.
Yes I do, I was in an area where I had to evacuate during hurricane Irma . A friends allowed us to stay at her house, she was out of the state at the time. I was so worried about my 4 cats that I didn’t put too much thought into my insulin and supplies. Well of course the power went out. We found one of her neighbors who had a generator that kept his fridge running he let us keep my insulin in it. We now have a whole house generator with a 500 gallon propane tank buried in our yard. I have a go bag ready to put my insulin in and we also have our own portable generator to take with us just in case we have to be evacuated.
I answered no because insulin needs to be refrigerated except for immediate use. Since it is the most expensive Rx I have, I could grab all of it, Toss in a case with other meds and be out in less than a minute.
I have about 2 weeks worth of supplies in a container in my pantry I can grab that if I have too, but it isn’t really for a disaster. I use it when I travel. I have grabbed it a few times when we had tornado warnings. Other than that I guess I am not really prepared for a natural disaster.
You’re going to also need your homeowners insurance policy #, birth certificate or visa or passport or Enhanced Driver License to prove your identity, copy of utility bill, copy of your property tax bill, copy of last income tax statement, water, a load of nutritional snack bars…what am I forgetting? A gun & ammo? My area is due for a really BIG earthquake and with busted gas lines, downed Wifi and no electricity, collapsed bridges….I must get a windup battery AM/FM radio. I know which broadcast radio station for emergency info. I keep a few expired Lantus and Novolog vials in fridge. Probably should have cyanide pill in case of nuclear accident. We have so many nuclear weapons in this state…if we were a separate country we ‘d probably be #10 in nuclear capacity, but this also make us a target. Should I get a microchip implanted with my social security # and blood type?
I live in South Florida, so it’s a necessity. Mine is in a waterproof toolbox from Lowe’s that I saw on one of the boards on Facebook. It carries like a briefcase, so grab-n-go. It has all my pump and cgms supplies. Battery chargers and insulin would be in a different case.
Said other. I Do carry/keep handy emergency supplies. For a disaster I’d need to grab my whole drawer or start storing all supplies in a suitcase to go!
I always have a two month supply of insulin and a back up of lantus in case of pump failure in the refrigerator, but in the case of power outage with the cause being widespread, insulin would only last one month. It depends on the scenario.
I am interested in what would be in an emergency kit for T1D that we don’t already have on hand.
No, but could quickly put things together. Scary to think about.
Yes, but. As your life lengthens, the number of Rx’s lengthen, and the size of the box lengthens, and the closet space taken up lengthens. Ugh. ¯\_( ͡❛ ︵ ͡❛)_/¯
I keep all my supplies in one space so if there were an emergency I could gather all up at one time.
Probably should. Insulin pens are on fridge and wear Dexcom but always carry meter and test strips in purse for back up. So if grab purse and pens should should be quick
Everything we need is in one cabinet and the insulin is in the frig so I only need a few minutes to throw it all in a ‘kit’ and go
No, but I have been meaning to put one together
My answer is no because who can afford the luxury of extra?
Insurance does not let me stock up on insulin. How am I supposed to be prepared for an emergency? I barely get enough to carry me through the month
Hm. I’m curious what kind of restriction you’re dealing with. Standard method lots of us relies on the fact that insulin usage is extremely variable. So Dr prescribes for the maximum you might use per day and you end up ahead at the end of prescription period. Over time you have a back-up cushion in your fridge. This has been my method for 40 yrs under all kinds of different insurers and Drs. Does your insurer impose some kind of cap and what is it based on?
I typically use one and a third bottles of insulin each month to fill my pump. Like William Bennett my endo provider writes an insulin RX for two bottles a month so I have back-up and over time I accumulate extra insulin. Thus I am always ahead of the curve and not in danger of running out. With Dexcom, it depends on how many extras I have on hand and if it is at the end or beginning of the next 90 day order cycle.
I keep a well stocked emergency preparedness grab & go kit handy within easy reach in my diabetes paraphernalia supply closet. I keep a Frio ready packed with insulins and Victoza in the butter compartment in the fridge so all I need to do is grab it on the way out of the house
Mainly but not everything.
I’ve thought about this from time to time, but am unsure where I would keep it with limited space. Currently my supplies are all in one closet, and my insulin in the refrigerator. I figure, in an emergency, I can throw it all into a few bags, and go. But, it is better to be prepared ahead of time.
Pharmacy mistakenly filled my novo vials for Omnipod with pens a few months back. Couldn’t take them back and told me to just keep them. (and reversed the charge since it was their bad. So I’m good until expy in 23 and that’s my emergency supply of insulin for now. I also have back up vials that would last a few months, but for Omnipods themselves, it depends on when next order is due. Even without an emergency, I generally only have a few left when it’s time to re-order. Stupid healthcare system doesn’t believe in backups. (Thank god I learned how to extend the Dex – it gave me a bit more of a safety net on those)
I keep a kit for travel with extra supplies. Add to it depending upon the length of the trip. Insulin is in fridge, so I get that separately. Otherwise, like others, all my supplies are in one space, so I can “grab and go” if necessary.
I try not to look on the gloomy side of things but I suppose there is a need to plan ahead in the event of a disaster or something like that happening.
I dunno if I’d call it a “kit,” but like most (and all should), I have my zombie apocalypse emergency-reserves stash. I learned early on that, since insulin usage is not fixed, you should have your Dr prescribe for the maximum and save what you don’t use for backup. When I’ve got a few months’ worth I hold off re-ordering until I need to replenish. I also have a script for Lantus & Fiasp pens (1 box each) in case of pump failure. I’ve only resorted to the Lantus once, but the Fiasp pens come in handy all the time.
As for pump and CGM supplies, same thing, only it’s a little trickier to stay ahead. For Dexcom, doing a few sensor restarts per order period (3 months) gets me a backup cushion of 3-4 sensors. For insets/reservoirs, I ALWAYS put in for a replacement when I have bad sites or rip outs, which they’re generally happy to do. I also try to order ahead so new ones arrive while I’ve still got 2 weeks’ worth on hand. Medicare makes you to certify that you’re down to 7 days before you reorder, so here’s what I do to deal with that: I LIE. Shamelessly and without a second’s regret. It’s not like I’m re-selling the darn things or using them for fun and games. All kinds of reasons why you might run short and be pulling your hair out (or having to resort to Lantus), so I make sure I have at extras of those too. Over time I’ve built up to about three months’ worth, so I’m about one full order ahead.
You describe well my strategies for ensuring I always have a cushion of all necessary supplies, the trickiest being, as you say, Dexcom. For a while each quarter my cushion for sensors is typically down to three weeks or so. I used to go on overseas work trips for a month or more, and ensuring I had enough supplies for those taught me how to game the systems successfully.
I answered other because strictly speaking I should say No, but the two small kit containers – I have (one for Fiasp and one for Tresiba) – I use every day contain enough supplies for a week or so, and it would only take a few minutes to throw together enough for a month or more including sensors for Dexcom and chargers for receiver and phone. But gathering enough other medications etc might take a bit longer; but probably not more than half an hour, and the only serious evacuation risk where I live would be a category 2 or higher hurricane, for which we always get much more warning than that (no flood or fire risk where I live, and I cannot think of any other emergency or natural disaster which would result in need to evacuate).
Thank you for mentioning charger for pump & phone. I’ll add that two or three items to the list. ✍
as Medicare patient, i’m restricted to max 30 supply limit therefore denying all Medicare patients from an adequate natural disaster kit
Again, since it’s “as needed” insulin should be prescribed for the max you might need and it’s pretty easy to get a “cushion” that way. DME supplies are harder, since usage is more predictable, but even there there’s a degree of uncertainty. E.g., my pump insets are figured at a rate that usually exceeds actual usage. So if I reorder at the earliest possible time I can build up a cushion that way. Plus ALWAYS put in for a replacement in the case of a pull out, bad site, failed insertion–anything along those lines. Not sure about Omnipod, but suppliers are usually pretty generous about that. Same goes for Dexcom. Always get a replacement for sensors that don’t last the stated period, whatever the cause (they’ll replace even if it’s just the filament hit a spot that hurts). Occasionally restarting a sensor also helps you get ahead a few sensors. Not advocating breaking the rules, but if those rules, rigidly followed, put you in a place where you’re have to be anxious about running out of what you literally need to stay alive, I think you’re entitled to interpret them as liberally as possible in your favor. This isn’t about having fun, it’s about having what you need to be secure about your own safety.
If you’ve been in a natural disaster, you will most likely be prepared for another one. Il survived the night of the tornados in Grand Island, NE on June 3, 1980. I never want to be worried about insulin, food and supplies ever again. Ever.
I had one. I kept having to borrow from it so it’s not complete. I have a “ go bag” in case of wildfire, but I needs more pump supplies. Hard to get extras…
Yes! We have a large carryon suitcase that we keep packed at all times. We go through once a month or so to restate supplies so that nothing expires.
We have a kit we take camping or when we travel and that is also our disaster kit. Since we use it on vacation the supplies are rotated out the only thing we have to grab is insulin and our standard is to grab a box of each (lantus & novolog) this would give her a months worth of supplies.
As others have mentioned, I do carry extra when traveling or away from home for extended time periods. Insurance will not allow you to request “extra”, so that is a bit difficult to navigate. One would think they would allow for at least one month “extra” as a backup or for emergencies. That only holds true for some things (insulin RX is easier to write for extra) but not the DME (OmniPod and Dexcom). And to pay out of pocket for “extra” just is not feasible for most people.
I agree 100% you are very correct. About the Omnipod and Dexcom prescription issue. I barely get my next 90 day order before I run out. I am on my last one when they arrive. I just have a blood sugar machine to check manually and some needles to inject insulin. Not sure how that would work with fast acting insulin.
I wonder what it would take to convince the powers that be to allow us to get a back-up supply of pump supplies. Even one month’s security would allow me to give up that nagging worry. Blood sugars might even respond gratefully!
I have an emergency kit in case my pump fails like injections, and glucose tabs. And I always have extra short acting insulin. The long acting is tricky for me to use. My body does produce a little insulin (based on a test). And I do have extra pump supplies, and batteries about 2 to 3 months worth.
I have all the supplies needed in one place so it’s easy to grab and go if needed.
Me to, except insulin which I keep in the frig and i have a cooler bag I can quickly put in service for my insulin.
I do have a go bag, but I would have to be able to grab my insulin. It has to be kept refrigerated so I don’t know how I would keep it viable if I stored it in the go bag.
I don’t have a kitty per se, but my supplies are in two larger boxes so they’d be easy to grab and go.
I have a backpack in a closet that contains about a month’s worth of diabetes supplies, water, and a change of clothes. I have a separate box with my other prescription meds that I could dump in the backpack quickly along with unopened insulin vials from the refrigerator. Having been evacuated ahead of a wildfire and unable to return home for a week, I like to be organized ahead of time and not have to prioritize what’s needed as I’m rushing out the door. (Thanks for the reminder to rotate my supplies.)
Sort of – I am half packed with the hardware but not the meds
No, and in an emergency evacuation I’m sure all of my time would be spent trying to round up Sunny Cat. My supply of Novolog vials is stashed in the refrigerator. That’s normally not an issue, but in an emergency situation the power often goes out. There’s just so much stuff, finding an additional space for a container to hold extras is difficult. I know it’s something I need to do.
No, but I should. I forget it’s a matter of life and death.
My Endo had me put a Go Kit together early on in COVID, in case I had to be hospitalized. I decided to maintain it since, and I rotate stock every 3 months with a reminder in my calendar. Special kit in fridge, too. Just grab-n-go.
I use a pump, it would be extremely difficult to put all the stuff I need in a GO bag long term. If I am home when whatever is going on happens then I could put supplies in a cooler and a small bag. If it is a long-term issue then I would have to find the stuff I need or possibly just die.
A kit? No. But I could quickly restock my travel case that I refill often anyway and be set for at least a week using that.
All my supplies are in a single drawer so could be thrown into whatever bag or pack I’m using to carry essentials – would just need to grab and add my stash of insulin vials – all possible within a couple of minutes.
Yes I do, I was in an area where I had to evacuate during hurricane Irma . A friends allowed us to stay at her house, she was out of the state at the time. I was so worried about my 4 cats that I didn’t put too much thought into my insulin and supplies. Well of course the power went out. We found one of her neighbors who had a generator that kept his fridge running he let us keep my insulin in it. We now have a whole house generator with a 500 gallon propane tank buried in our yard. I have a go bag ready to put my insulin in and we also have our own portable generator to take with us just in case we have to be evacuated.
I answered no because insulin needs to be refrigerated except for immediate use. Since it is the most expensive Rx I have, I could grab all of it, Toss in a case with other meds and be out in less than a minute.
Never thought about it . thanks for the reminder.
I have one but I don’t always have it well stocked since so needed items expire if I don’t use them up.
I have about 2 weeks worth of supplies in a container in my pantry I can grab that if I have too, but it isn’t really for a disaster. I use it when I travel. I have grabbed it a few times when we had tornado warnings. Other than that I guess I am not really prepared for a natural disaster.
You’re going to also need your homeowners insurance policy #, birth certificate or visa or passport or Enhanced Driver License to prove your identity, copy of utility bill, copy of your property tax bill, copy of last income tax statement, water, a load of nutritional snack bars…what am I forgetting? A gun & ammo? My area is due for a really BIG earthquake and with busted gas lines, downed Wifi and no electricity, collapsed bridges….I must get a windup battery AM/FM radio. I know which broadcast radio station for emergency info. I keep a few expired Lantus and Novolog vials in fridge. Probably should have cyanide pill in case of nuclear accident. We have so many nuclear weapons in this state…if we were a separate country we ‘d probably be #10 in nuclear capacity, but this also make us a target. Should I get a microchip implanted with my social security # and blood type?
These are some great ideas minus the cyanide!
I used to have one. I suppose I’ve gotten lazy after dealing with it for 40 years.
I live in South Florida, so it’s a necessity. Mine is in a waterproof toolbox from Lowe’s that I saw on one of the boards on Facebook. It carries like a briefcase, so grab-n-go. It has all my pump and cgms supplies. Battery chargers and insulin would be in a different case.
I live in Wisconsin where we don’t get a hurricanes or earthquakes. No need for it really
I don’t live in an area that is prone to natural disasters, but for those who do it’s not a bad idea!
Said other. I Do carry/keep handy emergency supplies. For a disaster I’d need to grab my whole drawer or start storing all supplies in a suitcase to go!
Am dangerously under supplied, at the current time. But yes have a Fanny pack with all supplies just under stocked until I can get new scripts.