Just a couple of weeks ago, I shared my annual blog post in support of the Spare a Rose campaign – you can read about what it is, who it benefits, how it started, and why I like to do what I can to raise awareness of the campaign each year here.
But right here, right now, is about how the Spare a Rose campaign has been extended and taken on a new meaning due to recent world events.
Presently, the campaign is now called Spare a Rose for Ukraine. In the past several days, I’ve seen rallying cries around the diabetes online community that have all echoed similar sentiments: What can we do to support people living with diabetes in Ukraine who need access to life-saving medical supplies in this time of crisis? That’s how Spare a Rose for Ukraine was born.
Throughout the month of March, donations made to the Spare a Rose platform will support people with diabetes in and out of Ukraine. These donations will help people who are in desperate need of supplies obtain them, and with donations being directed to Insulin for Life – a charity that has more than 20 years of experience providing insulin/diabetes supplies to under-resourced countries as well as responding to emergencies – I feel confident that this campaign will result in countless lives being saved in such dire circumstances.
If there was a rulebook devoted to the do’s and don’ts of life with diabetes…it would be quite the tome. I imagine it to be as long as the fifth Harry Potter book, which had 766 pages and weighed just shy of 3 pounds, though it would certainly not be as engaging of a read.
As I started to visualize a diabetes rulebook, I started thinking about the actual rules it would list out. It would cover the basics, for sure, of life with diabetes, like “count carbs at every meal” and “remember to take your insulin”. But it would also get into the minutia – the things that aren’t so obvious, even to those who are fairly well-versed in diabetes. Things that I didn’t know until adulthood, like how glycemic index, alcohol, caffeine, dawn phenomenon, and so much more can affect blood sugar levels.
Yeah, it would definitely be a boring-ass read.
But as I was coming up with a seemingly endless mental list of diabetes rules, it stuck out to me that there’s one that I don’t follow. In fact, I’m not sure that I ever followed it. And that rule pertains to insulin.
The rule is about how if you open a vial of insulin, it’s best to use it within a 30-day (or maybe it’s 28-day) window. I think it’s because manufacturers claim it loses its potency after that timeframe passes, but to me, it’s a bunch of BS.
Maybe I do go through whole vials of insulin in a one-month period, or maybe I don’t. I have no clue, I don’t keep track of my supplies to that extent. But what I do know is that “expiration dates” and “best by” labels aren’t always based on exact science. I’ve totally eaten my fair share of “expired” foods (things like granola bars or cans of soup, definitely not wilted spinach leaves or moldy yogurt) because I use my common sense when making judgment calls about consuming those items. For me, it works kind of the same way with insulin. As long as an insulin vial has been properly stored since opening it (in a refrigerator’s butter compartment, because of course), then I feel safe using it beyond a 30-day period – again, within reason, using logic (I doubt that I’d use insulin dated YEARS ago).
I’ve even heard of folks using insulin that’s past it’s expiry date, and while I haven’t done that myself, I can’t say I blame anyone for trying to use up every last drop of the stuff when it’s in possession and it’s necessary to take. It’s too expensive to waste.
So if by breaking this “rule” makes me or other people rebels, I’ll don the title with pride…and smirk to myself as I think about other diabetes rules (ahem, pertaining to prolonging CGM sensor life, or using sites other than the abdomen for my Dexcom, or hardly ever remembering to change my lancets…) that I’ve broken over the years.
This post was originally published on Hugging the Cactus on December 16, 2020. I’m sharing it again today because this was a fun and festive (if not messy) craft that I did with an insulin vial that I saved. Currently, I have about a dozen or so empty insulin vials set aside and I’m wondering what kind of craft I should do next…
I love Christmas, crafting, and some might argue that I love T1D (that’s mostly false, but when you’ve got a chronic illness, you’ve got to learn how to love some aspects of it…otherwise, you’ll be miserable).
So I recently *attempted* to combine all three of these things and do a little DIY project with an empty insulin vial.
And I learned a few things along the way…
I do not recommend messing with a glass vial without safety glasses, gloves, and a trash can nearby. I was lucky enough to avoid any major glass breakage, but some did happen, and I could totally see this craft getting wicked messy and potentially ouchie without taking the proper precautions.
Insulin vials are stable AF…they are not meant to be tampered with.
Glitter cannot be directly injected into an insulin vial. Period, bottom line, don’t even try it.
Okay, so now that I’ve got my disclaimers/lessons learned out of the way, let me tell you why I decided to fill an empty insulin vial with gold glitter.
For years, I’ve seen DIY projects floating around online involving old diabetes supplies. They range in the level commitment and skill involved, but there’s no questioning the creativity of our community when it comes to recycling supplies we’d normally throw away after using.
One project that I’ve seen over and over again is transforming an empty insulin vial into a Christmas ornament: Simply stick an ornament hook into the insulin vial’s rubber top, hang it on a Christmas tree branch, and bask in its beauty. I decided to take this concept to the next level by putting gold glitter into the vial because insulin is often referred to as “liquid gold” within the diabetes online community. What better way to represent that than to make it appear as though the contents of a vial were truly liquid gold?
In order to do this, I set aside a vial once I was finished with it/sucked every last drop of insulin out of it. Then, I made a sad attempt at combining glitter with water and using an old syringe to transfer it to the vial (needless to say, I had no luck). So I came up with a new strategy: Pierce the rubber stopper and try to funnel glitter in…and that didn’t work. It became evident that I’d have to remove the top entirely, so using my nifty new toolkit that my father just purchased for me (thanks, dad), I set about the task. I used a razor to carve the rubber stopper up and out, and then pliers to get the metal maroon covering off completely. I broke off a small piece of glass in the process – whoops – but using those tools did the trick for me…all I did after that was take the cap from a new vial of insulin and glued it to the top of the glitter vial to ensure most of its sparkly contents would remain inside.
And voila, here’s the end result:
As I held the glittery vial in front of my Christmas tree for a few photos (if I didn’t take pictures, then it didn’t happen), it occurred to me that there’s a strong likelihood that many families will have to make a difficult choice this holiday season: Give a special gift to a loved one, or use that money to pay for insulin instead. Or even more seriously, to have to choose between making this month’s mortgage/utilities payments, or getting life-saving medication.
The thought shook me, as nobody should have to make a choice like that ever.
And so I thought of something to add to my Christmas wish list: affordable insulin for all.
This post originally appeared on Hugging the Cactus on September 23, 2020. Just over one year later, I’m sharing it again because it’s a reminder that life with diabetes is filled with the unexpected, and it’s important to be proactive when dealing with these curveballs. Read on to find out how I handled the broken insulin vial…
As soon as I opened the package, I knew something was wrong.
The contents of said package were five vials of insulin – my regular 90-day supply. On the surface, nothing seemed wrong. They arrived in their usual styrofoam cooler that was taped shut. After removing the tape, I saw four ice packs next to the plastic packaging containing the insulin vials; again, this was all expected.
When I picked up the plastic package and used scissors to cut it open, though, a pungent odor greeted my nose.
A medicinal, harsh, familiar scent…the smell of insulin.
Upon further investigation, I discovered that one of the five cardboard boxes encasing the vials was totally damp to the touch. Gingerly, I opened it from the bottom flap, which was sticking out slightly due to the wetness. That’s when I saw the shattered insulin vial: Somehow, the bottom part of the vial had broken, spilling and wasting all of its contents.
I was shocked. In all my years of diabetes, nothing like this had ever happened to me before!
I didn’t really give my next step a second thought: Immediately, I jumped on the phone with Express Scripts, which is the mail order pharmacy that I use for my insulin and some other medications. I spoke with and explained the issue to a customer service representative, who connected me with a technician that promised a replacement vial would be mailed to me at no additional cost to make up for the broken one. I asked if they needed me to send the broken one back to them, but I was reassured that it wouldn’t be necessary because I had called them so they could document the incident.
My issue was resolved, just like that, in fewer than 15 minutes. While it was annoying to have to take time out of my day to figure that out, I’m very happy that I got a replacement quickly and easily. But really, where was quality control on this one?!
Insulin is expensive, as we all know. And to see that a perfectly good vial full of it was rendered useless due to defective packaging was a major punch to the gut, indeed.
I attended a Massachusetts #insulin4all meeting recently that got me thinking about how good people with diabetes tend to be at minimizing.
I speak for myself, and some other people with diabetes I know, when I say that we’re really good at making it seem like it’s not a big deal. We manage a 24/7, 365 chronic condition like it’s not the full-time job that it is. I have family and friends who occasionally pick up on this and marvel at my ability to be present in a myriad of social situations while discreetly watching my blood sugar levels or calculating insulin dosages. I rarely act like diabetes is as serious as it is and that’s because I’ve become an expert at making it seem like small potatoes in my life.
And I’m not just good at minimizing my diabetes – I’m also highly proficient in minimizing the fact that it has forced me to make difficult decisions in my life, particularly when it comes to financial choices.
During this #insulin4all meeting, I was conversing with other chapter members about whether or not we, as individuals, have struggled to afford insulin. And a lot of us confessed that we’ve been pretty lucky and have never really had to resort to making truly difficult choices when it comes to affording insulin or other diabetes supplies. Despite that, we feel passionately about those who struggle to gain access because we understand how high the stakes are – it’s literally a matter of life or death.
But just because we’re able to (for the most part) afford insulin, that doesn’t mean that we haven’t had to make certain choices that we might not have had to make if we didn’t have diabetes.
For example, when it comes to my career, I’d never consider a job that doesn’t offer solid health insurance plans. Even if my strongest desire was to be a freelance writer, I wouldn’t go through with it because I know that it would be challenging to figure out my health insurance. And I know that the minute I run out of FSA dollars each year, I start thinking about setting money aside just to cover the costs of my diabetes supplies…which means that instead of buying some new clothes or planning a weekend getaway, I sometimes have to sacrifice those luxuries in favor of ensuring I have enough money to cover my fixed expenses as well as my diabetes medications.
When I think about it, of course I realize that it’s not fair, but haven’t really considered it before because this is just how it is. I’m used to it. And so are many other members of my #insulin4all chapter. We’re all accustomed to having to make certain choices about our lifestyles or spending habits that minimize the larger issue of insulin affordability. We’re used to it, even accepting of it, but that doesn’t make it right and it certainly underscores the terrifying fact that too many people simply can’t afford insulin and have to make much tougher decisions in order to get it.
It’s time to become a little less good about minimizing and better at vocalizing – not just the seriousness of diabetes, but also the dire nature of insulin affordability and access that affects millions around the world.
This is a post by Pramita Jasuja that was originally published on the T1International blog on April 9, 2021. I am sharing it here today because I thought it was an interesting take on how type 1 diabetes is (or in this case, is not) recognized in another country. Thank you to Pramita for sharing her story and explaining the importance of legislation in advocating for people with diabetes.
Every new type 1 diabetes (T1D) diagnosis can be intimidating, both for the person and the family members. Many people with T1D are told they should be able to live a “normal” life and that they can do everything that a person without diabetes can do.
As a newly diagnosed child with blood sugar levels of over 570mg/dl, all that was on my mind was T1D. But a year post-diagnosis, when daily needles became the new normal, I was told by my family that I was completely fine and that there “was no need to tell anyone” about my medical condition. “I am normal” was stuck in my mind and I took it very seriously. So much so, when my endocrinologist asked me as the “patient” to sit near her chair, I replied: “I am not a Patient.” Both my parents and the endo smiled.
It’s been 7 years since that incident and I now reflect on my statement, especially over the word “normal”. Calling yourself “disabled” can have negative connotations attached to it. People often refrain from using that word, as if living with a disability is abnormal. Though if we do this, we deny a part of us. When it comes to legalities, the word “disability” is significant. Disability legislation considers people living with disabilities as subjects who possess rights capable of claiming that they have a disability – not those simply given charitable treatment. This was spelled out in the UN Convention on the Rights of People with Disabilities (CRPD), the human rights convention that hit the highest number of signatories.
I live in India. It’s one of the countries that has ratified this convention, but it’s also a country where myths and stigma overtake the real issues. A report by WHO found that in low-income countries where superstitions surrounding diabetes are common, the fatality rate is high. India is no exception. Due to a lack of proper health care facilities and a lack of national registry exclusively for T1Ds, children in the country are facing late diagnosis and even death. Considering the level of poverty in the country, blood test strips and continuous glucose monitors (CGMS) should be subsidized. Unfortunately, that is not the case. People with T1D are rationing them, which makes diabetes management challenging. Plus high blood sugar levels and/or ketones hinder the ability to perform “normal” day to day activities.
Insulin is like water. Someone with T1D can not live without it, but medical insurance in India does not cover it, and not every type of insulin is subsidized. So for those with T1D and financial struggles, there are the worries about the price of life-giving insulin and medical supplies.
After considering these facts, let’s look at the definition of “person with a disability” under the Rights of People with Disabilities Act (RPWD) 2016 that was enacted after India ratified CRPWD: “a person with long term physical, mental, intellectual, or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.”
The sad part, however, is that T1D is not considered a disability under this Act, even though the current problems faced by people with T1D in India do “hinder (their) full and effective participation in society equally with others”. I’m arguing that you can not tell every T1D to live “normally” when the condition doesn’t always allow for it. The community is suffering silently and legislative action is being denied.
It is through the recognition of injustices and assertion of our rights that we can ensure equal opportunities. T1D advocacy is emerging in India and as a collective we are highlighting these issues. Change is happening. In 2020 in Kerala High Court, a public interest litigation was filed over the issue of including T1D in the list of disabilities and creating a national registry for people with T1D. This step is important. Recognition of T1D as a “disability” would obligate the government to fulfill what is laid down in the Act, for example providing affordable and accessible health care, ensuring the implementation of non-discrimination clauses and creating special faculties at educational institutions.
Seven years after that endo visit incident, even though I will never be able to deny that I am a patient, what I can do is advocate for patient rights. At a macro level this means standing up for the community. Recognition under the legislation of people with diabetes as those with disabilities is the first step, a chapter in the book of advocacy in my country of India.
This article was written by Elana Megerian and it was originally published on March 24, 2021 on the T1International blog. I’m re-posting it here today because, quite frankly, I found it disturbing. I had no idea that safely navigating encounters with law enforcement was a problem for the diabetes community. I can also admit that I made assumptions based on the headline of this article, but decided to stick with it only to discover that my assumptions were wrong and that the criminalization of diabetes symptoms is a real issue. If you have any doubts about this article, I encourage you to read the full piece so you can understand what’s going on and the steps that should be taken to address it.
When widespread Black Lives Matter protests erupted in the summer of 2020, the diabetes online community began crowdsourcing ideas about how to safely participate. Concerns grew in response to an incident in which police confiscated the supply bag of a protestor with type 1 diabetes, despite her consenting to a search and communicating her need for glucose.
A viral video of the encounter revealed another pressing need of the diabetes community: how to safely navigate encounters with law enforcement. This led me down a rabbit hole that heightened my alarm as I found story after story of police and prisons withholding insulin.
In 2013, footage from Rikers showed Carlos Mercado repeatedly vomiting, fainting, and displaying signs of severe illness in the presence of corrections officers. At age 45, he died after having his insulin withheld for 15 hours.
In 2014, William Joel Dixon was found dead in his cell after his insulin was withheld for seven days. Records show that his blood sugar was only checked once during that week. He was 28 years old.
In 2015, Michael Robinson died after being put in solitary confinement in response to his pleas for insulin. He was 33.
In 2016, Morgan Angerbauer’s death in an Arkansas jail cell was caught on video. Records show that she had been calling out for help, but was ignored. She received no insulin for 23 hours, and her requests for blood glucose checks had been denied. She was only 20 years old.
In all these situations, staff were aware that the victims required insulin to live. In all the cases, insulin was withheld long enough to induce diabetic ketoacidosis, a potentially fatal complication that usually occurs in people with type 1 diabetes who do not have regular access to insulin. It is a torturous and almostly completely preventable cause of death, yet it is far too common in US prisons. Since 2008, at least 12 such deaths related to withholding insulin have occurred in the state of Georgia alone.
Diabetes symptoms have also often been criminalized. In August 2020, Max Johnson, a black man with type 1 diabetes who was having a seizure due to hypoglycemia, was dosed with ketamine by police and Emergency Medical Services (EMS) after his girlfriend called them for help. The same drug that killed Elijah McClain, ketamine was reportedly delivered to Johnson at such a high dose that it rendered him unable to breathe and led to a two-day stay in the ICU. The American Diabetes Association has documented many other cases in which people were denied insulin, or had their diabetes symptoms treated like criminal behavior by police.
These instances flagrantly defy the 8th and 14th amendments of the United States, which protect the right to adequate medical care for incarcerated people as well as those in police custody. Since the law is unequivocal, it is distressing that violations are commonly committed by the very individuals and systems meant to enforce it.
One factor perpetuating this is the lack of recourse for victims and their families. It’s hard to successfully bring a case against the police or a prison. Even if such a case is won, it doesn’t bring back a lost life, reverse damage from chronic hyperglycemia, or ease the trauma of being brutalized by those called in to help you through a medical crisis.
So what can be done? Standards of ethical behavior need to be raised for police, EMS, and corrections officers. Given how common the condition is among incarcerated individuals, anyone working with this population should be educated about diabetes, its basic management, and the signs of acute crisis. Deaths due to subpar medical care aren’t rare occurrences. Chronic illnesses are the leading cause of death in US prisons and are probably frequently covered up.
It is time to recognize that incarcerated people with diabetes are particularly vulnerable to insulin insecurity. #insulin4all is more than a hashtag: It is a rallying call to everyone impacted by insulin inaccessibility, and a mournful cry for all who have lost their lives while insulin remains clearly in view, but cruelly out of reach. It’s a demand for justice for everyone who needs insulin to survive, including incarcerated people with diabetes. We must find ways to meaningfully include and involve this population in our activism.
This post was originally published on Hugging the Cactus on March 13, 2020…coincidentally, the first day of the pandemic that I started to work from home. I decided to repost it today because even though so much has changed in the last 365 days, the fact that so many people know so little about insulin remains the same. I think that if the world knew these 3 things about insulin, then it would go a long way in understanding how it is vital to most types of diabetes care and treatment, and people might finally realize that something must be done about insulin accessibly and affordability.
See that tiny glass vial in the below image? Can you believe that the contents of it are extremely precious?
It’s kind of crazy, right? But besides knowing that insulin is priced outrageously, there’s actually a few other things that I think the world should know about insulin.
Not all insulin is created equal. Just like diabetes, insulin exists in various forms. Besides liquid insulin, there’s also inhaled insulin (Afrezza). And some people with diabetes may even take oral medications that are designed to help increase the effectiveness of insulin that they either receive via injection or produce on their own. There’s brand-name insulin produced by several drug manufacturers (the big three being Eli Lilly, Novo Nordisk, and Sanofi) as well as generic versions of the drug…but that doesn’t mean that generic insulin works just the same as brand-name insulin for all people with diabetes. Insulin is complicated and different types work better for different people.
Insulin is incredibly sensitive. Take one look at the vial in the above photo and tell me that the insulin inside it is safe at all times. Nope, it sure isn’t! Besides the packaging being super fragile, people who rely on insulin must also be careful to keep it at the proper temperature at all times. All it takes is dropping the vial once or leaving it in an unstable environment for the insulin to be rendered useless, potentially wasting a few hundred dollars. It’s as volatile as it sounds.’
Taking too much or too little insulin is dangerous and life-threatening. For some people, there can literally be a life-or-death difference between one unit of insulin. Too much can cause blood sugar to plummet and a person can experience severe hypoglycemia that may result in shock. Too little insulin has the opposite effect: A person will experience hyperglycemia that can have ranging consequences, some that are minimal/temporary, others that are very serious. That’s why precision is so important when dosing for insulin; on top of that, nobody wants to waste a single drop of the stuff because it is so expensive. But this is what many people with diabetes need in order to survive.
So when you see the hashtag #Insulin4All or hear someone talking about how overpriced it is, you’ll know some of the basic characteristics about insulin that make it invaluable to people with diabetes. Perhaps you’ll be inspired to join the fight to make insulin affordable and available to all – as it should’ve been to begin with.
Our first meeting was introductory, but the second one focused on legislative action.
Truth be told, I wasn’t exactly stoked on this topic because, well, I don’t find law-making particularly interesting. I always imagine a bunch of stuffy middle-aged white men sitting in a room and arguing about section X of law Y and I’m sorry, but…yawn.
However, I was surprised by how much I took away from this meeting that recapped the current state of legislation and action for the MA chapter of #insulin4all. Here are my big takeaways:
There’s a lot that one person can do in order to help make legislative change. It goes beyond contacting local legislators – an individual who offers their time, resources, and voice can do so much by learning the legislative process, attending hearing or floor sessions, testifying, and acting as a resource to legislators. As a person with diabetes, I have stories and knowledge to share that can help legislators really understand what a person with diabetes experiences and needs…and that in itself is a powerful tool.
Attempts at change have been made…and tabled. One piece of legislation we talked about extensively during this meeting is Kevin’s Law, which is named for Kevin “Howdy” Houdeshell. He passed away in 2014 from rationing insulin, after he was unable to refill his prescription for insulin due to his prescription being expired and the unavailability of his doctor due to the New Year’s holiday. This law would allow for pharmacists to dispense a chronic maintenance drug such as insulin to a patient without a current prescription in limited circumstances. In Massachusetts, the bill was reported favorably by the senate committee last March, but tabled in July due to a variety of factors. On the bright side, a meeting has been scheduled with a recently elected representative who could help revitalize discussions of the bill, so we can be hopeful that change will be made.
Public production of insulin is one way to make it more affordable. So this is pretty neat: California is the first state to establish public production of “biosimilars” that include insulin. This article that I’m linking to explains it best, but basically, this just means that the state of California is getting into the generic drug business to prevent price gouging and fight back against big pharma. But what’s really cool and exciting to me is that Massachusetts may be just as capable (in other words, have just as much market power as California) to produce generic insulin, too. MassBiologics is a non-profit, FDA-licensed manufacturer of vaccines that could also potentially produce insulin. Though I did a quick search and couldn’t find much on the matter, it’s a fascinating concept that could make insulin much more affordable in Massachusetts.
And those are just a few of the key points we covered in the meeting. I left the Zoom session feeling so much more informed as to how legislation works in the state of Massachusetts, and the steps that I can take to make changes not just as an individual, but as someone working with a motivated and knowledgeable group like the MA chapter of #insulin4all.
Despite the best of efforts to “control” all aspects of life with diabetes, the bottom line is that it can still be totally unpredictable from time to time.
Usually, these unexpected diabetes experiences aren’t exactly welcome…but sometimes, diabetes surprises me in wonderfully delightful ways.
Here’s three of ’em that have occurred in semi-recent memory:
1 – That time I was able to eat an entire homemade blueberry muffin WITHOUT BOLUSING FOR IT. Um, that’s crazy, right?! I had planned on eating half of said muffin in order to bring up a low blood sugar, but, well, it just tasted so damn good that before I knew it OOPS the whole thing was gone. I hemmed and hawed for a long time over whether I should bolus for the excess carb intake, and finally decided that I would just monitor my blood sugar and correct it as needed. But, weirdly enough…I saw my BG slowly rise and settle into the mid-150s and STAY there. Absolutely amazing, right? Maybe blueberry muffins are the new cinnamon cure for diabetes…
2 – When a pod change coincided with said pod running on its very last unit of insulin. Talk about using insulin to the very last drop, right? I still don’t know how I managed to pull this one off, but all I know is that I wore a pod for the maximum amount of time (80 hours) and had just one unit of insulin left inside it by the time it expired for good. I wish I could make this happen with every pod change, but then again, it is a little nerve-wracking to go down to the wire like that on a pod…
3 – That one instance when I drank one cocktail too many and my blood sugar behaved perfectly. This was a total freak incident and let me say upfront: I condone drinking with diabetes as long as it is done by individuals 21 and over in a safe, educated manner!!! Okay, now that I have that out of the way…like other grown-ass adults, sometimes I like to unwind with an adult beverage…and like OTHER grown-ass adults, once in a blue moon (please acknowledge the pun) I go a little overboard. Now, normally when I go a little too hard, I pay for it the next day with a hangover and high blood sugar, but on New Year’s Eve? When I drank Prosecco and a beer and a frozen Irish cream cocktail that was insanely good but carb-o-licious? I wound up with stellar blood sugars (and only a slightly hangover that was likely me just being overtired thanks to my puppy)…a head-scratching occurrence that was an absolute pleasant surprise.
And these are just three happy diabetes accidents that I can think of – I’ve absolutely had others over the years. Dumb luck? Total coincidences? Events that happened because I actually do kind of know what I’m doing? Whatever you want to call them, I can for sure classify these moments as the good kind of diabetes surprises.