There Is No Insulin in Iran

This post was originally published on the T1International blog on October 27, 2020. I am reposting it here because this situation is completely, utterly horrifying and heartbreaking. As a community that collectively lives with the same chronic condition, we must come together and help Iranian people with diabetes be heard. It’s a grim reminder that the notion of “insulin for all” does not only mean that we must fight for affordable access to insulin, but we must also fight for access, period. And that simply isn’t how it should be.

To be honest, “there is no insulin” is the actual situation. Shortages of insulin are not something new in Iran, but recently there is no insulin at all. We were shocked by responses from our politicians who said, “The shortage is just for pens and we have plenty of internal production of insulin. People can replace it.” However, the types of insulin that are produced in Iran are NPH and R. Few consumers in Iran use NPH. About 70 percent of Iranian people with diabetes use insulin pens.

I myself could only find Novo Rapid insulin that was 10 times more expensive than what I normally pay – and what I paid about three weeks ago. The cost was not logical at all. We have heard many heartbreaking stories. For instance, there was a mother who did not feed her children with diabetes because they couldn’t find insulin.

We’ve made groups on social media and we are using hashtags to support each other with our own insulin, even if we are worried that we won’t have enough. In these days of quarantine, there are already a lot of people dying in Iran because of coronavirus. Now we worry that we will lose more because of the insulin shortage.

“I worry that the promise of insulin was meant to make us silent, but we have to keep speaking out.”

People have to search lots of pharmacies in their city. If they are lucky, they can find two or three pens (usually only short-acting ones). Recently, the only available type of long acting insulin pens are with insulin called “Basalin”. There is no international evidence and confirmation of safety (such as FDA approval) for this medicine.

In Iran, we just have access to glucose meters. There are no other advanced devices available, such as continuous glucose monitors or other sensors. But now, in addition to our insulin problems, we have to cope with the shortage of glucose test strips, too. How can we control our blood sugar levels without them?

As far as we can tell, it seems like our own government does not consider the current situation to be a serious issue. These days are suffocating for us. We are so unsure about everything and we don’t know exactly why this happened. When we seek an answer, we don’t get a proper one. Some say it is because of the economic sanctions imposed on Iran by the USA. Political issues should not affect something like that. People’s lives matter.

The government of Iran reacted to recent protests by saying they will distribute 600,000 pens of insulin, but they did not mention the type. Although some of us have found insulin, others are still searching pharmacies and can’t find any. I worry that the promise of insulin was meant to make us silent, but we have to keep speaking out. Thank you for helping us to be heard.

Metformin Update #5: Calling it Quits

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.

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I thought Metformin was right for me, but it turns out it definitely is not.

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.

 

Every Last Drop

27 units. That’s exactly how many units of Humalog were left in my pod, and I had no choice but to literally throw them away. My pod was expired – it had been for 8 hours – and to my knowledge, 8 hours after a pod expires, it will cease working entirely.

I kept the pod on those 8 extra hours because I couldn’t bear the thought of wasting insulin.

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27 units and no choice but to throw all of them away.

It’s a strange, messed up game that I played. I was taking a bit of a risk by wearing my pod for so long after it expired. After all, it’s just a piece of technology, and it can sometimes be difficult to know whether or not it’s working properly when it’s brand new, let alone within the window of expiration. But this is the game that I have to play, along with so many other people with diabetes, because insulin is precious.

Insulin keeps us alive.

Insulin is a need, not a want.

Insulin is exorbitantly expensive, so much so that it ranks #6 on a listing of the 10 most expensive liquids in the world.

With that in mind, tell me…would you feel comfortable throwing away even one single unit of it?

One could argue that maybe I could’ve tried to extract the 27 units from the old pod and reuse it in a new one – but to me, that’s an even more dangerous game to play. I have no clue whether that’s safe, or if there’s too much risk involved with germs and cross-contamination. Maybe I’m just paranoid, but when it comes to my health, I have to be.

So as much as it pained me to be unable to use every last drop of insulin, I made the only viable choice for me and disposed of 27 units of Humalog.

27 units, 16 units, 3 unit, 1 unit…no matter what the quantity is here, every last drop of insulin is invaluable.

When will we see change? Is it really too much to ask for insulin to be affordable to all?

Molly, Meet Metformin

You may have read the title to this post and said to yourself, “Met-WHAT?”

Metformin is the new medication I’ve started taking (along with my typical insulin) to help regulate my blood sugars.

Maybe you didn’t make it all the way to that second sentence; instead, maybe you just Googled Metformin to learn more about it. And you probably immediately got confused, because the Google search results explained that Metformin is a medication normally prescribed to people with type 2 diabetes. You know that I have type 1, though, so what gives? Why am I taking this new pill?

You see, for about a year or so, my endocrinologist has been gently encouraging me to try Metformin. She expressed concerns over the fact that I’ve had diabetes for more than 20 years, and in that span of time, I’ve had to take a lot of insulin. Like, an incalculable amount. And while that insulin helps to keep me alive, there’s also risks associated with it. Namely, she explained to me that there’s research that indicates that people with type 1 who rely on large amounts of insulin have a higher risk of developing cancer later in life.

ClearanceYard Sale

Whoa. The “c” word. Something I never thought I’d hear during a doctor’s appointment. If you know me personally at all, then I’m sure it’s not hard to imagine that I pretty much shutdown at the mention of “cancer”. Almost immediately, I panicked and asked why she thought this research was worth mentioning. She said that it was part of her reasoning for wanting me to start Metformin. The idea is that it would make my insulin more effective, and ultimately decrease the amount of insulin I need each day. She went into a little more detail, mentioning that the only side effects tend to be nausea/upset stomach – and that’s when I stopped listening. I politely told her that I didn’t think Metformin was a wise option for me at that time, and later that day, when I took to Twitter to ask other T1Ds what they thought, I gained swift validation that I’d made the right decision: Other T1Ds with Metformin experience told me that the stomach issues they had when taking it were miserable and that they wouldn’t recommend giving it a try. Plus, I consulted with my T1D pharmacist aunt, and her opinions matched those of the other T1Ds on Twitter. So that was all I needed to hear to feel at peace with my choice to not take Metformin.

In fact, it was enough for me to turn my endocrinologist’s offer down during our next two or three appointments. I was relieved that she never pushed me to try it, but there was a small part of me that wondered whether I should give it more serious consideration. Maybe I should let her talk me into a little, rather than brushing it away and using fear as my excuse.

So we did talk about, during my most recent visit with her earlier this month. She gave me some more compelling reasons to consider taking it. Not only could I reduce my insulin intake, but it might also help me with some preexisting digestive issues I’ve had since childhood. When I asked her about the negative side effects on the stomach that I’d read about online, she told me that she would only prescribe me the “extended release” version of Metformin, which had a much lower (if any) chance of inducing nausea or any less…desirable gastrointestinal disorders.

This news definitely perked me up. We discussed a plan for introducing Metformin to my body: Start by taking one pill daily after dinner. Increase by one pill each week until I’m at four pills per day, the limit. At any point in time, I could message her with questions if I started to notice low blood sugars in the evening.

I felt reassured by this logical plan, as well as her explanations of the benefits of Metformin. So I bit the bullet and I’m in my first week of incorporating it into my post-dinner routine. I can’t say that I’ve noticed even the slightest difference, which isn’t a bad thing. I imagine that will change as my dosage increases.

I intend to blog about this new journey with Metformin; not just for the sake of keeping track of how it affects me, but to also help inform other T1Ds who may have been or may be in the same situation that I was. We’ll just have to see how it goes, but for now, rest assured that I’ll be honest in my writings about my Metformin experience. At this moment in time, I can’t help but feel hopeful that down the road, I’ll be glad I made this decision when I felt ready for it, as opposed to when I was fearful of it.