3 Things I Want the World to Know About Insulin

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?

Can you believe that, at approximately $9,400 per gallon, insulin is ranked as the sixth most expensive liquid in the world?

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.

Ethan Zohn_ A Survivor Contestant Who Inspires-2
Did you know that insulin is the sixth most expensive liquid in the world?
  1. 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.
  2. 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.’
  3. 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.

How I Did My Part to Help Prioritize All Types of Diabetes as it Pertains to COVID-19 Vaccination Rollout in My State

Across social media, I keep seeing the same type of photo pop in my feeds that sparks jealousy, triumph, fear, confusion, and hope all at once: the COVID-19 vaccine selfie, fondly referred to as the “vaxxie”.

I’m beyond happy that dozens of family members and friends have received the vaccine. It makes me feel good to know that they’re doing their part to help protect themselves and others, and it’s wonderful to know that the vaccine is being distributed to some extent.

However, I take issue with part of the distribution plan in my state.

Using my voice to hopefully change/improve the rollout of the vaccine in MA felt good.

In Massachusetts, COVID-19 vaccine rollout has been chaotic, to put it mildly.

It’s probably similar in many states, but the part that I find most frustrating is the fact that people with type 1 diabetes (and seemingly no other co-morbidity) are being lumped together with the last group of individuals to be vaccinated.

My endocrinologist confirmed this for me the other day during my virtual appointment: “Why is it [presumably her computer system] showing you in phase 3? You should be in phase 2…” I nodded vigorously and we talked for a few minutes about how disconcerting the whole vaccine rollout plan is. I explained to her that the Massachusetts chapter of #insulin4all was coming up with language to email to local representatives to implore them to do everything possible to prioritize vaccination for all people with diabetes, and a couple days later, I got my chance to do just that.

I looked up my local and state representatives with a quick Google search and emailed three individuals who are in positions to revise public guidance regarding COVID vaccinations. As soon as I hit “send”, I felt this amazing sense of empowerment – it felt good to do something about an issue that I’m very passionate about.

While I wish that I could do more to ensure change, I do feel a sense of pride that I tried to do something by using my voice. It represented the first (but certainly not the last) time that I plan on contacting legislators to help improve diabetes care, management, and accessibility of supplies – not just for myself, but for all people living with diabetes.

What I Learned About Legislation and Action for the MA Chapter of #insulin4all

Last month, I wrote about how I decided to join my state’s chapter of #insulin4all because I’ve been upset about the high costs of insulin for awhile now, and I want to do anything I can to help make it more affordable…not just in Massachusetts but all across the U.S., and even in the world.

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.
Access to insulin is a human right that, unfortunately, we have to fight for.
  • 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.

500 Blog Posts Later…

You know how in Spongebob Squarepants, title cards are held up every so often in episodes to depict the passage of time?

Imagine me holding one up now and saying in the Spongebob narrator voice: “500 Blog Posts Later”…

I can’t believe I’ve hit 500 blog posts published on Hugging the Cactus…all in the span of a little more than 3 years.

I wish I could claim this super tidy desk as my own; alas, it’s just a stock photo…my actual desk is quite messy.

Most of these posts I’ve written and posted here exclusively. A couple posts have appeared on sites like Beyond Type 1. A dozen or so posts I’ve shared twice because I either especially liked them or wanted to revisit something I’d written years ago. And a handful more posts were written by others for organizations like T1International and shared here because of their powerful messages.

I’m quite proud of this 500 post milestone and want to give credit…not to myself for it, but to you, and to the other writers and individuals who have helped me get this far.

Without YOU reading my posts and commenting, my desire to keep sharing and writing would wane.

Without other writers and individuals, I’d lack inspiration and perspective that are key to keeping this blog as interesting as possible.

Support means the world to me when it comes to managing diabetes, and as it turns out, when it comes to managing this blog, too. So thank you for yours.

I hope you continue to come back to read the next 500+ blog posts.

Why I Decided to Join My State’s #insulin4all Chapter

On Saturday, December 5th, I attended my very first T1International #insulin4all meeting for the Massachusetts state chapter (virtually, of course).

What motivated me to join this meeting?

There’s a couple of factors…for starters, I’ve been a digital advocate for T1International for just over six months now. In that time, I’ve become familiar with their mission to not just promote diabetes awareness, but to empower individuals to share their stories and experiences with diabetes and fight for change to make insulin affordable for all.

I’ve spent the last few months reposting and sharing infographics and blog posts from T1International, but lately, I’ve felt the urge to do more because clearly, we’ve still got a long way to go when it comes to lowering the list price of insulin.

The problem for me, though, was that I wasn’t sure where to start, and since I work full-time, I was definitely foggy on how much of my spare time I could dedicate to a cause.

I’m excited to get involved with my state’s #insulin4all chapter.

I had a vague awareness that #insulin4all chapters existed across the country, but I didn’t know whether the one in my state was active or if joining it would be the right fit for me.

So I felt it was kismet when I saw an Instagram post from a friend I met through the College Diabetes Network (hi, Claire!) announcing that she was going to take over leadership of the Massachusetts #insulin4all chapter. Through her post and a couple of messages back and forth, I learned that the chapter had been stagnant for awhile and it was Claire’s goal to assemble a group to revitalize it and start making real progress in our state.

Our first meeting went incredibly well: A handful of people showed up and we got to know each other as well as the rough roadmap that would direct our next several meetings over the coming months. What really struck me is that everyone who attended obviously had diabetes in common, but on top of that, we all shared a frustration with the current cost of insulin, even though we haven’t directly felt the impact of it like other members of our community have. It seemed that each person felt motivated to work together to do what we can in our state, and to me, that was a sign that I was going to be glad that I joined the group.

What’s next for the Massachusetts #insulin4all chapter? I’ll be sure to share it as we develop goals and set out to achieve them!

Creativity and Activism: Another World is Possible

This post originally appeared on the T1International blog on November 30, 2020, and it was written by Marina Tsaplina. I am sharing it here today because it made me start to think about creativity and activism as a unit for the first time. Want to know exactly what makes it so powerful to join art with activism? Read on…

When I think about activism, I think about creativity. The two are inseparable. Think about how much creativity and strength it has taken the #insulin4all movement to:

  • Counter the stories put out by the for-profit U.S. health industry about why insulin “has” to be so expensive and transform the national narrative around insulin affordability
  • Continually transform the pain in our community into stories for change
  • Imagine a world where insulin is affordable and accessible for every single person who needs it to live.

#insulin4all, as a banner of the movement, is itself an act of fierce creativity. It imagines a world that we do not yet have, one that countless activists are organizing to bring forward. The courage and imagination that this statement holds brings forward a vision for the world we want to see. It makes it possible to strategically identify those whose actions harm or block us from achieving this vision. And under the banner of the #insulin4all vision – this dream that we are turning into a reality – we organize and strategically map out the steps we must take in order to achieve the world we want to see.

#insulin4all also means a different thing for each of us: each person who joins the movement has their own personal meaning and reason for why we join. And it is these deeply-felt personal stories that make adding art into advocacy and activism actions so powerful. It is another way to bring our personal voice into a collective movement for change. It is also fun!

Here are five reasons – showcasing #insuiln4all and other social change movements around the world – why joining art, creativity and activism together is so powerful. It fosters self-expression, community building, activation, it is inspiring and attention grabbing, and it leads activists to better engage with the media.

1. Self Expression

Getting creative helps hone your personal advocacy voice, transforms a personal feeling into a political message, and contributes your creative spirit into collective creativity. It also helps people feel that every single person’s voice matters. Because each voice does matterCommunity art making is a deeply democratic process.

Patient activists pictured below are expressing their personal stories. As another example, signs created by individuals from the disability community NoBody is Disposable call for an end to the discriminatory medical rationing policies during #COVID19.

2. Community Building

Working on an art-build is a fantastic way to build community. Pictured below is one of the in-process photos from advocates making large banners for the New York #insulin4all Chapter and actions. The Chapter was still new and forming, and the art-making process, as well as the many advocacy actions the Chapter continues to do, forms connections between the members. Yes, it takes energy and effort, but once you’ve done it, you have the materials to use in many future actions! Not to mention, people showing up to contribute helps each of us know we are not alone in this fight.

This below pictured postcard was designed by New York #insulin4all Chapter member Annalisa van den Bergh for advocates to fill out and send to the governor. This is a great example of digital (and safe!) advocacy during COVID.

Community artist and organizer Rachel Schragis created screen-printed signs and banners, and led on the creation of many concepts for the Sunrise Movement, because climate health = public health = our health. 

3. Political Activation

There’s no one right way to join creativity and advocacy – the image here shows the powerful way an imprint of a red hand across the mouth united indigenous women and allies across Turtle Island (United States and Canada) to bring awareness to the gender-and-race-based violence being perpetrated against indigenous communities.

Being immersed in creative energy opens the space within people to reflect on their own experiences, share and unite in dialogue with others, share opinions, build knowledge and commit to actions. People may often feel embarrassment, or shame, for being unable to afford insulin. This is how oppression works: we internalize external causes and place the blame on ourselves. Creative activism helps activate and engage a person to realize that their suffering has social origins, and helps inspire them to become an advocate and activist who works for policy change.

4. Inspiration and Attention Grabbing 

To build energy and grab attention of the public to join your cause, there’s no better way than through creating a bit of a public spectacle. The large banners that the New York Chapter created took up space, and made our messages loud and clear for both the media, and passers-by. The portraits below of the lives lost to insulin rationing by artist Mike Lawson created a deeply-felt homage in helping us mourn the sons, daughters, sisters, brothers, mothers and fathers we have lost to pharmaceutical greed.

Giant puppets have a long and deep history in activism, including the HIV/AIDS movement and beyond. Little Amal, a giant refugee puppet, embarked on an epic journey from Syria to Europe in order to “rewrite the narrative about refugees”.

5. Media Engagement

Finally, by uniting creativity, purpose, emotion and action and creating attention-grabbing visuals, our cause is more likely to catch the attention of social media, and the press. Strong, clear messaging, unique perspectives, and inspiring visuals unite joy, inspiration and purpose in the long, winding road of social change.

Most of all, art and creativity helps us remember the most important thing: We are unstoppable, and another world is possible! 

National Diabetes Awareness Month 2020: A Recap

And just like that, we’ve somehow, bewilderingly, arrived at the final day of National Diabetes Awareness Month 2020.

Not sure how that’s possible considering it should still technically be March 2020 (you know, when shit hit the fan), but here we are!

The blue circle…a symbol of diabetes awareness and advocacy efforts.

At the beginning of November, I really wasn’t sure that I was ready to don my diabetes advocacy hat and amp up my awareness efforts for the entire month. I’ve had enough going on in my personal life (spoiler alert: I bought a condo and moved into it at the start of the month) and as a result, I’ve spent much less time on social media and a whole lot more doing my very best attempt at adulting.

And despite that, I still found myself immersed in advocacy efforts – and blown away by what everyone else in the diabetes online community was doing.

Daily posts, live IG videos, fundraising efforts, and so much more happened all month long. They were inspiring, educational, and highly motivational to someone like me who was tepid at best about diving into advocacy activities this year. They were definitely enough to encourage me to keep posting for one of the many diabetes-themed Instagram challenges for the month. As minor as it was to write captions each day based on the prompts, it’s still what worked best for me in this weird year.

My big takeaway from this, though, isn’t that I should have done more or that I should feel guilty for doing the bare minimum…no, it’s a reminder that advocacy doesn’t take place during a single month or on one day.

Advocacy is a year-round thing.

I’m proud to talk about diabetes practically every damn day in some shape or form because I think that it helps people in my life realize that diabetes itself is a 24/7, 365-kind-of gig.

And I’ll keep talking and writing and expressing and advocating ’til the day there’s a cure for it.

World Diabetes Day 2020: Celebrating Nurses Making a Difference in the Lives of People with Diabetes

One thing that hasn’t changed in 2020 is the significance of tomorrow’s date: November 14th is internationally recognized as World Diabetes Day, a day specially reserved for diabetes awareness and advocacy.

Several weeks ago, when I realized this date was rapidly approaching, I was unenthused about it, to put it mildly. My life has been super-duper busy lately…I’ve dealt with high stress and anxiety levels, an overloaded schedule, and not enough time for self-care. So when it hit me that diabetes awareness month was just around the corner, and with that it would bring World Diabetes Day, I just felt “meh” about it. This year has been so sucky that celebrating didn’t feel right or something that I could muster up the energy to do.

However, that was before I realized that there’s a theme for this particular World Diabetes Day…promoting the role of nurses in the prevention and management of diabetes.

World Diabetes Day is tomorrow…what will you do to celebrate?

Nurses are heroes under normal circumstances. But in the context of 2020? They’re more important than ever. I read more about the reasoning behind the World Diabetes Day theme on the International Diabetes Federation website and immediately understood why nurses deserve recognition on 11/14:

Nurses currently account for over half of the global health workforce. They do outstanding work to support people living with a wide range of health concerns. People who either live with diabetes or are at risk of developing the condition need their support too.

People living with diabetes face a number of challenges, and education is vital to equip nurses with the skills to support them.

As the number of people with diabetes continues to rise across the world, the role of nurses and other health professional support staff becomes increasingly important in managing the impact of the condition.

Healthcare providers and governments must recognise the importance of investing in education and training. With the right expertise, nurses can make the difference for people affected by diabetes.

The International Diabetes Federation, 2020

So tomorrow, on World Diabetes Day 2020, I’m going to express my gratitude for all nurses, especially the ones who work specifically with people with diabetes. They deserve all the recognition and support in the world, and in a year in which the world is faced with a pandemic, the work that they do (along with other healthcare workers and essential employees) for people with and without diabetes is invaluable.

Thank you to all nurses and healthcare workers…and Happy World Diabetes Day to my fellow people living with diabetes. Wishing a wonderful day for you all filled with good blood sugars, education, and positive advocacy experiences!

A Song to Describe Diabetes Today…

On Instagram, I’m participating in the #TrueDiabeticChallenge all throughout November. Today’s post was inspired by the prompt for Day 9 of the challenge – name a song that describes diabetes today. Here’s a song that I think describes my relationship with diabetes today, even though it’s a throwback tune…

I’m a child of the 90s, so you can bet that I listened to a whooooole lot of boy bands and girl groups growing up – N*SYNC, Backstreet Boys, Spice Girls, and Destiny’s Child were just a few of them.

But of course, I loved my solo artists…especially Britney Spears.

Speaking of 90s throwbacks, doesn’t this color scheme remind you of Lisa Frank’s colorfully designed notebooks, folders, and pencils?!

Her first album, “…Baby One More Time”, was everythiiiiiiiing…oh, the NUMBER of times it was played in my house! Like most kids my age at that time, I couldn’t get enough of her bubblegum-sweet voice and catchy-as-heck lyrics/tunes. No matter what your opinion of her has been throughout her contentious career and life in the spotlight, you can’t deny her talent as a singer, dancer, and entertainer.

Brit’s been on my mind lately (I know I’m not the whole one – #FreeBritney!), so a few times throughout the workweek, I tend to listen to her music from all sorts of albums she’s put out over the years. I’m happy to report they’re still absolute BOPS today, but what’s more is that I found one that perfectly fit this prompt for me:

(You Drive Me) Crazy!

Okay, besides being an all-around excellent song with an entertaining music video (yes, that’s Melissa Joan Hart AND Adrian Grenier making cameos in it), it also tooooooooootally describes how my diabetes makes me feel these days. It drives me CRAZY!!! Let’s look at some of the lyrics…

Baby, you spin me around, oh

The earth is moving, but I can’t feel the ground

-Me when my blood sugar is low

You drive me crazy, I just can’t sleep

-Me every dang time my blood sugar interrupts my sleep

Oh, oh, oh crazy, but it feels alright

Baby, thinking of you keeps me up all night

-Definitely NOT alright because I hate when diabetes keeps me up at night and it sure as hell isn’t my “baby”

So maaaaaaybe it’s a bit of a stretch to say this song is perfect for me and my diabetes, because the way Brit sings it and how the lyrics are written, she’s enjoying being driven crazy. But not me! This is one of those songs where I could easily rewrite it and make it an eff-you diabetes anthem.

Really, though, the hook of the song captures it all: YOU DRIVE ME CRAZY.

The “you” here is YOU, DIABETES!

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.