Discussions
Reply to: Scenario run-through – Hurricane Ida, let’s learn from each other Posted August 31, 2021

My partner is in Baton Rouge and she was well prepared for this one. Lost power for a bit over 24 hours and her big lesson learned was having a better fan — she had a hand fan but her whole apartment building had to open doors + windows for the breeze, it was way stickier than she expected once the winds died down.  She says that most of the towns in LA have 72-hour plans for hurricane preparations, but many areas didn’t have a 72 hour warning this time since it went from category 1 to cat 4 so quickly, and according to a local meteorologist, as the world warms that will happen more. They are used to hurricanes hitting at a lower category than expected, but not a rapid escalation like Ida was. So another lesson is to be ready for the storm to escalate at the last minute, and to not rely on evacuation warnings coming a few days ahead. 

Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted August 31, 2021
Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted August 31, 2021
Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted August 31, 2021
Reply to: What have you shot before and what were the results? Posted June 29, 2021
Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted June 28, 2021

Thanks for sharing your setup Pops! Having so much stored in one place sounds a bit nerve wracking.  I’m glad you’re spreading the word about freezing sometimes being worse than getting warmed up. I work with enzymes and bacterial cultures and you have to be very careful about what can get frozen and what can get thawed. And even if something is stable in a wide temperature range, freeze/thaw cycles degrade proteins. My RA medicine is a monoclonal antibody that is totally fine at room temperature for 2 weeks, but can NOT be frozen.   Have you looked into the federal shelf life extension program? The military worked with the FDA to test a ton of old medicine. I know insulin is one of the ones they say didn’t last as long (along with liquid antibiotics and nitroglycerin) and I wonder if you can find the actual data anywhere. I imagine storage conditions matter a lot.  Also, if you haven’t already heard about it, the Open Insulin project is very cool: https://openinsulin.org/ 

Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted June 28, 2021

Thanks Bob, and I totally agree that the focus is more on supply. My PhD is on vaccine design, but as a biological engineer with a chronic illness I could talk all day about resilient biopharmaceutical manufacturing systems. A cool paper I read recently was about how they’re trying to make livestock vaccines in plants like corn and alfalfa, so in theory you could just grow them from seed and feed them to your animals. They already manufacture some medicines in plants using virus vectors, but it requires a lot of lab equipment and specialized greenhouses to do. But eventually we might see corn that has the code for a swine vaccine in its genome, for example. Raises a lot of questions — like we’re seeing with Covid, pathogens mutate and vaccines need to be updated, so you probably wouldn’t have heirloom vaccine corn, and I doubt that drug companies would ever sell seed packets, even if it made our global food production systems more secure. And controlling quality/dosage would be huge issues. Still, it’s something I think about.  https://www.hindawi.com/journals/av/2015/936940/ 

Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted June 28, 2021

Hey Supersonic! Funny you should bring up One Second After, because I definitely have thought a lot about that book recently. That and David Mitchell’s The Bone Clocks, where another diabetic kid struggles after supply chains go down. Both books end with hand waiving about where drugs could come from (if I remember right, the military shows up in the nick of time with insulin in OSA, and the Icelandic navy does in the other). My #1 concern is supply more than keeping things cold myself. I can’t exactly buy up future stocks of this stuff at that price, and they come in Epi-Pen style auto injectors, so I don’t control dosage. I plan to just be vigilant about refills no matter what, but it feels like I could be doing more. Already I’m a couple weeks ahead because I had to pause taking it for the Covid vaccine. It doesn’t seem like something I’ll be able to stock up a year’s supply of — even if I could afford it, it comes from a specialty pharmacy. I wonder if this is something that could be addressed on a community level, or what the specialty pharmacy’s disaster plans are. Maybe something I could look into advocating for? This is making me confront how much I rely on other people. I guess I’m glad I’m learning now.  Luckily RA isn’t fatal in the short term, but it is disabling. Long term it causes organ damage, and untreated can take 10 years off your life, but people have lived with it for a long time. Some do okay, others are bedridden for decades. I am in an online support group and a lot of people in the group had it before modern treatments existed, or didn’t believe their doctors until it was too late. In that sense I am lucky. Thanks to all that info, the physical effects feel like something I can think about planning around. The most likely thing that could keep me from accessing my medicine isn’t an EMP, it’s getting on Medicare, which doesn’t pay for biologics. But as a 26 year old… that’s not an imminent threat unless I have to go on disability.  I like the 12 volt fridge idea, I’ll look into them. I do have ice packs and a cooler for short term power outages (which I’ve already had to use), some instant cold packs in my first aid kit (which I don’t think I’d ever use for this), and a tiny cigarette lighter/120V fridge that I sometimes use when I travel. Haven’t heard of terra cotta fridges, so thanks for the tip.  And honestly, yes it’s been taxing, but I’ve been able to see it coming for years. This feels like a structure test — a very real trial of how I will deal when something I rely on (in this case, my body) doesn’t work like I expect it to. In that sense I was totally ready, and am managing it well, which feels good. I would prefer not to be dealing with it, but you know, that’s true for most of the stuff we prepare for. 

Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted June 22, 2021
Does anybody have a game plan for rare/refrigerated medication?
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Posted June 22, 2021
Reply to: iFixit makes world’s largest medical repair database for free Posted September 20, 2020
Does anybody have a game plan for rare/refrigerated medication?
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Posted June 22, 2021
Reply to: Scenario run-through – Hurricane Ida, let’s learn from each other Posted August 31, 2021

My partner is in Baton Rouge and she was well prepared for this one. Lost power for a bit over 24 hours and her big lesson learned was having a better fan — she had a hand fan but her whole apartment building had to open doors + windows for the breeze, it was way stickier than she expected once the winds died down.  She says that most of the towns in LA have 72-hour plans for hurricane preparations, but many areas didn’t have a 72 hour warning this time since it went from category 1 to cat 4 so quickly, and according to a local meteorologist, as the world warms that will happen more. They are used to hurricanes hitting at a lower category than expected, but not a rapid escalation like Ida was. So another lesson is to be ready for the storm to escalate at the last minute, and to not rely on evacuation warnings coming a few days ahead. 

Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted August 31, 2021
Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted August 31, 2021
Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted August 31, 2021
Reply to: What have you shot before and what were the results? Posted June 29, 2021
Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted June 28, 2021

Thanks for sharing your setup Pops! Having so much stored in one place sounds a bit nerve wracking.  I’m glad you’re spreading the word about freezing sometimes being worse than getting warmed up. I work with enzymes and bacterial cultures and you have to be very careful about what can get frozen and what can get thawed. And even if something is stable in a wide temperature range, freeze/thaw cycles degrade proteins. My RA medicine is a monoclonal antibody that is totally fine at room temperature for 2 weeks, but can NOT be frozen.   Have you looked into the federal shelf life extension program? The military worked with the FDA to test a ton of old medicine. I know insulin is one of the ones they say didn’t last as long (along with liquid antibiotics and nitroglycerin) and I wonder if you can find the actual data anywhere. I imagine storage conditions matter a lot.  Also, if you haven’t already heard about it, the Open Insulin project is very cool: https://openinsulin.org/ 

Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted June 28, 2021

Thanks Bob, and I totally agree that the focus is more on supply. My PhD is on vaccine design, but as a biological engineer with a chronic illness I could talk all day about resilient biopharmaceutical manufacturing systems. A cool paper I read recently was about how they’re trying to make livestock vaccines in plants like corn and alfalfa, so in theory you could just grow them from seed and feed them to your animals. They already manufacture some medicines in plants using virus vectors, but it requires a lot of lab equipment and specialized greenhouses to do. But eventually we might see corn that has the code for a swine vaccine in its genome, for example. Raises a lot of questions — like we’re seeing with Covid, pathogens mutate and vaccines need to be updated, so you probably wouldn’t have heirloom vaccine corn, and I doubt that drug companies would ever sell seed packets, even if it made our global food production systems more secure. And controlling quality/dosage would be huge issues. Still, it’s something I think about.  https://www.hindawi.com/journals/av/2015/936940/ 

Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted June 28, 2021

Hey Supersonic! Funny you should bring up One Second After, because I definitely have thought a lot about that book recently. That and David Mitchell’s The Bone Clocks, where another diabetic kid struggles after supply chains go down. Both books end with hand waiving about where drugs could come from (if I remember right, the military shows up in the nick of time with insulin in OSA, and the Icelandic navy does in the other). My #1 concern is supply more than keeping things cold myself. I can’t exactly buy up future stocks of this stuff at that price, and they come in Epi-Pen style auto injectors, so I don’t control dosage. I plan to just be vigilant about refills no matter what, but it feels like I could be doing more. Already I’m a couple weeks ahead because I had to pause taking it for the Covid vaccine. It doesn’t seem like something I’ll be able to stock up a year’s supply of — even if I could afford it, it comes from a specialty pharmacy. I wonder if this is something that could be addressed on a community level, or what the specialty pharmacy’s disaster plans are. Maybe something I could look into advocating for? This is making me confront how much I rely on other people. I guess I’m glad I’m learning now.  Luckily RA isn’t fatal in the short term, but it is disabling. Long term it causes organ damage, and untreated can take 10 years off your life, but people have lived with it for a long time. Some do okay, others are bedridden for decades. I am in an online support group and a lot of people in the group had it before modern treatments existed, or didn’t believe their doctors until it was too late. In that sense I am lucky. Thanks to all that info, the physical effects feel like something I can think about planning around. The most likely thing that could keep me from accessing my medicine isn’t an EMP, it’s getting on Medicare, which doesn’t pay for biologics. But as a 26 year old… that’s not an imminent threat unless I have to go on disability.  I like the 12 volt fridge idea, I’ll look into them. I do have ice packs and a cooler for short term power outages (which I’ve already had to use), some instant cold packs in my first aid kit (which I don’t think I’d ever use for this), and a tiny cigarette lighter/120V fridge that I sometimes use when I travel. Haven’t heard of terra cotta fridges, so thanks for the tip.  And honestly, yes it’s been taxing, but I’ve been able to see it coming for years. This feels like a structure test — a very real trial of how I will deal when something I rely on (in this case, my body) doesn’t work like I expect it to. In that sense I was totally ready, and am managing it well, which feels good. I would prefer not to be dealing with it, but you know, that’s true for most of the stuff we prepare for. 

Reply to: Does anybody have a game plan for rare/refrigerated medication? Posted June 22, 2021
Reply to: iFixit makes world’s largest medical repair database for free Posted September 20, 2020