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.
But this reminded me of the importance of being proactive whenever I suspect something is wrong with any of my diabetes supplies…when in doubt, do something about it.
This post was originally published on the T1International website on June 29, 2020, and was written by Cyrine Farhat. She discusses her participation in the WHA virtual forum on Access to Insulin and how she used it as an opportunity to voice her concerns about barriers to insulin access in her country (Lebanon) and around the world.
An Insulin Resolution is Necessary for Lebanon and the World
Diabetes has been on the global agenda in some form ever since World Diabetes Day was created in 1991,which is also the year I was born. It took 15 years to put diabetes on the United Nations agenda after that, to tackle the urgent need to pursue multilateral efforts to promote and improve human health, and provide access to treatment and health-care education. Fast forward another nine years to 2015 when the 2030 agenda was launched and the Sustainable Development Goals (SDGs) were adopted. Despite all of that, we are now in 2020, talking about access to insulin when we should have already made it widely available and affordable to all pillars of society.
Sadly, my country and many others are still facing many challenges with insulin access and affordability. Lebanon’s recent financial crisis has caused a dollar shortage that, since September, has restricted the ability of medical supply importers to import vital medical supplies. First it started with masks, gloves, and other protective gear, as well as ventilators and spare parts, and now even essential diabetes supplies are sometimes unavailable. The government has also not reimbursed public and private hospitals for bills, which has made it harder for diabetics to purchase their medication and other diabetes-related medical supplies. For example, Novorapid insulin has been hard to find at pharmacies over the past two weeks.
I had the honour to participate in the WHA virtual forum on Access to Insulin and to address all my concerns as a patient advocate from Lebanon. The aim of the virtual forum was to facilitate a wide discussion between a group of experts and advocates on this issue. The crucial problem is that almost a 100 years after the breakthrough that has saved millions of lives worldwide – the discovery of insulin – many people still cannot access or afford it.
The fact that I was able to voice my concerns as a person with type 1 diabetes among the panellists that the forum included was very empowering. The panel included Zachariah Muriuki, Project Manager – National Diabetes Prevention and Control Program at Ministry of Health, Kenya; Dr. Kaushik Ramaiya, Consultant Physician and Chief Executive Officer at Shree Hindu Mandal Hospital, Dar es Salaam, Tanzania; Greg Perry, Assistant Director General, IFMPA; and Emer Cooke Director, Regulation of Medicines and other Health Technologies, World Health Organization.
The forum started by showing a video that displayed testimonials from people living with type 1 diabetes around the world, including the barriers they face in regards to access to insulin, and responses from health care providers. Although I’ve personally lived with diabetes for almost 13 years and have dealt with so many obstacles, it still breaks my heart when I see what people with diabetes worldwide have to go through in order to get insulin and remain alive.
When asked during the forum about the barriers that the Lebanese have been facing with access to insulin and how the government needs to address these concerns, I depicted the current economic situation in Lebanon. The government is absent, especially after the revolution that spiked in October 2019 and left behind a collapsing economy. With hyper-inflation skyrocketing at 240% and the Lebanese Lira collapsing, the government has decided to remove the subsidy from bread and combustibles. The Central Bank has set their own policies restricting depositors’ access to funds in their current dollar accounts and the transfer of money abroad, making it harder to finance imports, including of medical equipment and medicine. These issues can put people living with diabetes in a very dangerous position. With no substitute to imported insulin, and the decline in purchasing power due to inflation, how will Lebanese people be able to afford their medication?
I shared that I believe in the upcoming months we will be left with an insulin crisis once the subsidy is also removed from medication. Patient advocates in Lebanon have been trying to reach out to the government, to no avail. The only thing we can do is to continue to raise our voice until we are heard.
In another question, I was asked what it meant to have the World Health Organization (WHO) and their Member States recognize and prioritize access to insulin, and how people living with diabetes and the global community can take this issue forward. I said that once the international community admits and perceives “insulin as a human right”, the entire scope of advocacy for access to insulin would have solid foundations and would shift from voicing about lack of access to actually forcing governments to comply. As advocates, we must seek accountability from governments regarding progress on WHA targets and address hurdles and bottlenecks in the process. Governments should also set state-level targets, and develop a strong participatory monitoring framework and management information system to measure outcomes of targets under SDGs and WHA.
The panel discussed other matters such as steps that have been carried out in Kenya to enhance access to insulin, how Tanzania has also worked towards improving access and the recommendations it provides to other countries, and how the WHO is committed to improving equitable access to insulin. It was concluded that the WHA resolution on insulin needs to be comprehensive in the requests to governments and to the WHO on actions they should take. Here, civil society, governments, and WHO need to define key requests and alight goals that serve making insulin accessible.
As a Global Advocate for T1International, I will continue to push for change in any way possible. Insulin is life support and no person should have to decide between putting food on the table or affording insulin. I truly believe that we are capable of creating change. The right of access to insulin is mine, yours, and the world’s. If it is our right, then we will not stop until we get it!
Have you ever been in such a hurry to do something within a certain period of time that it works to your disadvantage?
I guess there’s a reason why they say haste makes waste…
…especially when haste results in accidentally whacking your insulin pump off your arm.
I was reminded that this can happen the other day when I had my friend over for some socially distant hang time. Just because we had to stay six feet apart during her whole visit didn’t mean that I had to be a bad host, though, and I was in a rush to bring some Goldfish for us to snack on while we sat in the sun outside. I flitted about the kitchen, grabbing the bag, a plate, and some napkins to bring out with me. When I went to open the sliding door that would take me from the kitchen to the porch, I gave myself just enough room for my body to slip through it sideways.
I should’ve walked through the opening slowly; rather, I dashed through it like I was about to cross the finishing line of a race – and my pod was suddenly, a bit violently, ripped off my arm in the process.
“ArrrrrRRRRRRRggggHHHH!” (I think that’s a pretty good approximation of the sound that I made when it happened.)
My friend, alarmed by my animalistic emanation, asked if I was okay. I came to my senses and calmly explained that I’d just knocked my pod off my arm, and she looked on in horror as she saw it dangling by an adhesive’s thread on the site.
“Doesn’t that hurt?!” she asked in dismay.
I reassured her that no, while the actual sensation of the pod ripping off my skin didn’t hurt, it definitely stung that I was now forced to replace it even though it had only been in use for less than a full day. It sucks when I can’t use my supplies to their fullest extent because each time something like this happens, there’s a dollar amount attached to what I’m wasting, and what’s worse is that I can’t blame it on anyone or anything except myself.
Ah, well…a fresh pod was applied and no harm was done in the end. But next time I try to enter or exit that sliding door, you can bet I’ll be a lot more careful when I do so.
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.
It’s Valentine’s Day in a couple of days. Whether you celebrate the holiday or not, I’d like to make you think about something that represents the day well: a bouquet of a dozen roses.
A dozen roses is a classic Valentine’s gift, right? But what if you received 11 roses in your bouquet, instead of 12? What if you knew that a rose was spared because the value of that flower helped support a child living with diabetes in a less-resourced country?
I bet you wouldn’t mind getting one less rose in that case.
This Valentine’s Day, please consider sparing a rose. Life for a Child is a nonprofit charity that created the Spare a Rose campaign. They’re able to support nearly 20,000 young people living with diabetes by using donations to buy them insulin, syringes, clinical care, diabetes education, and more. Anyone who’s familiar with diabetes realizes that access to care, education, and resources is critical to living a healthy and normal life. No one would want to deny another, especially a child, from having to forgo these resources because of the financial burden associated with them.
I’ve written about the Spare a Rose campaign for the last few years because I think it’s a beautiful way to celebrate a day that makes some swoon and others sick to their stomachs. A common complaint among people in this day and age is that too many holidays are all about raking in the dough for companies like Hallmark; in other words, most holidays have lost their original meaning and have become too commercialized.
So here’s your chance to bring back some significance to Valentine’s Day, whether you’re single, partnered, or married.
Well, well, well…looks like I’ve got another Metformin update for you all.
You’ve probably lost track of where I am in this long, twisting journey with the pill. (If you need a refresher, all you need to do is click here, here, here, here, and here.)
All caught up? Great. Now you really understand how complex my relationship with Metformin is.
There were times that I loved it. There were times that I hated it. And there were times when I simply couldn’t be sure if it was working for me the way that I’d hoped and needed it to.
This last go-round represented the latter thought: Metformin simply wasn’t cutting it for me.
I’d been taking one pill daily for about a month when I decided to quit. The reason why I stopped taking it is simple: I wasn’t noticing a dramatic reduction in how much insulin I take each day. It was maybe a one or two unit drop, and that just doesn’t justify me taking a pill like this on a daily basis.
Now, you might be wondering why I didn’t amp up my dose. After all, it says right on the bottle that I can take up to four pills daily. Well, I chose not to take more for a few reasons: 1) I’m in between endocrinologists right now, and don’t really have anyone to consult regarding dosage, 2) At one point in time, I thought I noticed side effects of taking Metformin, and I’ve convinced myself that any possible side effects would intensify with a higher dose, 3) I wasn’t sure whether the higher blood sugars I was dealing with in the fall were due to stress or permanent changes that my body was experiencing.
So yeah, as you can see, it’s not a cut-and-dry answer when it comes to me increasing my Metformin dose.
I feel like I’m in a better place now with my blood sugars and daily insulin intake. Certainly, things have improved compared to how they were in September and much of October. Rather than fret over taking “too much” insulin every day, I’m going to focus on things that I have greater ability to control, such as the foods I choose to eat (that may or may not impact how much insulin I need) and the levels of exercise I get each week. I feel like that’s a healthier, better way to take care of myself.
So…farewell, Metformin. I won’t miss you. I know you do great things for other people with diabetes, but I’m not sure that you and I are a good match.
“Wake Me Up When September Ends” by Green Day is the song in question.
The entire month of September, I felt like my diabetes was asleep or something: It didn’t respond the way it should have to my regular dosages of insulin.
It was truly maddening. I did everything I could to get to the bottom of the mystery.
I thought it was rotten insulin. Nope. I thought it was maybe a bad batch of pods. Nah. I thought maybe there was something wrong with me (well, yes, I’m definitely a weirdo but for real, there was nothing out of the ordinary going on).
I thought I was going to go nuts, trying to get to the root of the problem and coming up with potential causes only for each one of them to be shot down.
I was not happy to be taking higher doses of insulin than needed, and I wanted answers. Luckily for me, I had an appointment scheduled with my endocrinologist (my last one with her, for now, I hope) at the end of the month, so you can bet it was a major topic of conversation.
We came up with a plan for me to resume Metformin. I didn’t really want to, and there’s certainly more on my feelings about that to come in a future post, but I was desperate to reduce my daily insulin intake and find some sort of stability in my CGM graphs between meals.
So I started Metformin…again. And the difference was noticeable within days.
My diabetes woke up to the insulin doses I was taking, and I felt such an immense relief that I can’t really even describe.
Oh, and you’re welcome for getting that Green Day song stuck in your head.
And I’m not talking about scary-high levels. I’m just referring to levels that are higher than I’d like – between 160 and 200. And I’d stay stuck right in that range, even after bolusing quite aggressively.
I chalked it up to stress – life has been a little unkind to me this summer. I also blamed it on making less-than-healthy food choices, and questioned whether I needed to seriously start thinking about taking Metformin again (even though I had a shitty experience on it).
In other words, I took the brunt of responsibility for my highs. I was angry with myself for letting my diabetes get out of my control, and was just starting to accept responsibility when it hit me that it might be something other than my body rebelling against me at play here.
As it turns out, I should’ve suspected an outside factor from the beginning. That’s because my insulin had, somehow, gone bad.
I’m still very confused about how or why it happened. My insulin had an expiration date that was like, 2 years from now. The contents within the vial were totally clear – discoloration would’ve indicated an issue – and everything about this vial of insulin looked completely fine.
It was, and still is, an utter mystery to me as to how or why the insulin spoiled.
If nothing else, the case of the rotten insulin made me wonder…why hasn’t anyone developed strips that can check the effectiveness of insulin yet?
Can somebody please get on that (and give me partial credit for helping to spark this genius idea)?
I’m waiting, impatiently, to learn just how much I’m going to have to pay for a 90 day supply of insulin.
I’ve been waiting for what will inevitably feel like a punishment.
It’ll feel like a punishment because it will feel harsh and unavoidable. And it’ll be more intense than is fair because my only offense is having a pancreas that doesn’t work the way that it should.
Every time I log into the Express Scripts website, I feel a sense of dread sweep my body. I anxiously click around the portal until I get to the recent order screen (see above image). My eyes immediately flock to the blue box that will eventually display how much money I owe for my insulin.
It’s a process that reminds me of checking my grades when I was in college: After I took an exam, I’d enter my username and password into the student portal to find out whether grades were posted. I’d repeat this process multiple times a day until I found out how I scored. It was a nerve-wracking routine back then, but I wish I could tell my younger self that that was NOTHING compared to looking up the cost of my insulin.
One Friday per month, I’ll write about my favorite things that make life with diabetes a little easier for me.
Okay, so it’s DEFINITELY been a few months since I last wrote about a favorite thing of mine. I admit that I started running out of things that I deemed worthy enough of sharing with my readers! It felt silly to continue doing it on a monthly basis if I didn’t have anything particularly great to write about, so I stopped, promising myself that I’d pick it up again the next time I got excited about a product.
Enter the Vial Safe insulin protector sleeves that I just ordered.
I’d seen posts about these little insulin vial jackets before on Instagram, and I always had them bookmarked in the back of my mind as something I should order. After all, I’ve felt the agony of a shattered insulin vial before, and let me tell you: It’s awful. I was somewhat young when I broke my first (and hopefully only) vial and basically brushed the whole thing off because I assumed that it would be easy (i.e., free) to get a replacement. But now, at age 26 and in my first few months of being on my own health insurance plan, I know better. Accidentally breaking an insulin vial in this day in age seems like the equivalent to setting a stack of hundred dollar bills on fire – completely pointless, unnecessary, and wasteful.
So I’m betting that my two new Vial Safe sleeves will help protect me from ever experiencing a shattered vial again. I’m especially looking forward to bringing them with me on my next trip, as they’ll surely keep my vials more secure as I have the tendency to shove them wherever I can find space in my luggage.
I bought my Vial Safe insulin protectors on Amazon, but there also available for purchase here. And no, I wasn’t asked (and I’m definitely not being paid) to write about these or any other products I’ve ever mentioned on Hugging the Cactus – I simply believe in spreading the word about a quality item if it has helped make diabetes management easier for me in some way.