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.

Dexcom G6: Available to Who? A Post by Tracy Ramey

This post was originally published on the T1International blog on February 17, 2021. I wanted to post it here on Hugging the Cactus because it was incredibly well-written and eye-opening. Thank you to Tracy Ramey for sharing her perspective and prompting me to really think about diabetes technology and who it is available to you. I couldn’t agree more with your closing thoughts. Read on to learn about Tracy’s thoughts on the Dexcom G6, its availability, and the problems with the commercial that aired during Super Bowl LV.

Celebrity. Celebrity in a filter. Technology. Sleek. Celebrity showcasing a device that many people with diabetes can’t afford and telling said people with diabetes that they should get with the times. That’s it. That’s the entire commercial for Dexcom G6, a continuous glucose monitor (CGM), that aired during Super Bowl LV Sunday. To the world outside of the diabetes community, it presents an easy solution to the problem of diabetes management, a quick aside they can tell that person with diabetes they know in the office on Monday.

“Hey I saw Nick Jonas in that commercial. He said you don’t have to prick your finger anymore! Ya know, he doesn’t even look like he has diabetes.”

As a mother of a child that has type 1 diabetes, managing this condition is always on my mind. I am my child’s “pancreas momager,” if you will. For the past three years I have endured well meaning people giving advice, offering empty platitudes, and not understanding the tightrope we walk as a family attempting to raise a well rounded human that is growing physically and emotionally while course correcting a disease that is never the same day to day. I hear often how diabetes is manageable, an understanding that is as true as it is nuanced. Managing diabetes is not a one size fits all leather jacket. Said person with diabetes will assuredly be giving Diabetes Splainin’ Danny an immense amount of side eye.

With this ad, Dexcom and Nick Jonas had an immense opportunity to truly advocate for all insulin dependent people on the world’s stage. Instead of dispelling hurtful myths such as diabetes being caused by eating too much sugar, or insulin being “so cheap, it’s like water”, they created new ones like people with diabetes do not need to prick their fingers. The ad conveyed that there is an easy solution to diabetes management, which is a huge blow to everyone that has been fighting with insurance companies, pharmaceutical companies and device companies just to get basic insulin and other vital supplies covered, including glucose monitors.

Dexcom’s ad conveyed that there is an easy solution to diabetes management, which is a huge blow to everyone that has been fighting with insurance companies, pharmaceutical companies and device companies just to get basic insulin and other vital supplies covered, including glucose monitors.

Most people with diabetes know about Dexcom and the other major continuous CGM company, FreeStyle Libre by Abbott. Assuredly, if they don’t have one of these devices, in most cases it’s not for lack of understanding – it’s due to high cost. For many uninsured or underinsured insulin dependent people who are already struggling to afford their insulin, the Dexcom (with an initial out-of-pocket price tag for receiver, transmitter, and pack of 3 sensors that exceeds $1,000) is technology that remains out of reach. The ad boldly proclaimed “It looks like the future, but it’s available now.” Available to who? I know people that have had to plead with their insurer to keep their Dexcom if coverage changes occur. Many can’t get it covered in the first place, even though being able to have CGM technology is a gamechanger in the life of people living with diabetes. IT affords a level of control that is hard to think of giving up once you experience it.

But again, we must ask: who is this available to? This technology requires a prescription, and we know that Black and Brown communities are being offered access at much lower rates than their white peers. I am a Black woman with a family history of type 2 that puts me at greater risk of developing it. Interestingly, despite having several family members with type 2 diabetes, my child with type 1 is the first person that has CGM technology, and that was because I pushed for it.

You know what I’m getting at. The elephant in the room is medical racism and implicit bias. When cries for justice rang out for Ahmaud Arbery, George Floyd, and Breonna Taylor, many companies found themselves scrambling to make sure they appeared to sympathize with Black people and the systemic disregard for our lives. But here we are, almost a year into the pandemic, with a January 8th, 2021 headline from Endocrine.org that reads “Black people with type 1 diabetes, COVID-19 are four times more likely to be hospitalized for diabetic ketoacidosis.”

Companies that make a profit off of medical devices as life altering as Dexcom owe it to their consumers to look at the data and adjust to get their technology onto the bodies that need it most. Instead of addressing how they are going to provide a solution to inequities that black, Indigenous and people of color (BIPOC) face – especially Black patients – in comparison to their white peers, Dexcom paid $5 million plus for a Super Bowl ad that ignores barriers to access completely. This is chump change when, according to Yahoo!Finance, they earned $1.93 billion in 2020.

Dexcom offers a life saving product that I am fortunate enough to be able to use for my child because of my health insurance. I am acutely aware that many who look like us and need it the most don’t have access to CGMs like Dexcom’s G6. The Black and Brown people that are experiencing medical systemic racism deserve better. All insulin dependent people deserve better than a 30 second ad that wags it’s finger at all of us silly Billy gumdrops that are still pricking our fingers. Don’t spit on me and tell me it’s raining.

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.

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! 

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.

Water, Insulin, and Lies: An Explanation of What Insulin Truly Costs

Let’s talk about a couple of life-saving liquids for a moment: water and insulin.

Water is a clear liquid that quenches thirst and hydrates. It is essential for human life and costs $1.69 per one liter.

Insulin is a clear liquid that manages blood sugar levels. It is also essential for human life, but it costs $300 per 10 milliliters.

That’s outrageous on its own (and its something I’ve written about before, and will continue to write about, until insulin is affordable and accessible to all).

But what’s even more bewilderingly egregious is the fact that on September 29, 2020, the President of the United States of America lied about his actions (or shall I say, inactions) taken to lower the cost of insulin during the first presidential debate.

My jaw dropped when I heard him boast that he’s reduced insulin prices 80-90% and that it’s “like water” for people with diabetes now.

There are so many things completely and utterly wrong with that statement that it’s almost impossible to cover them all, but let’s start with the bill I paid for my last 90-day supply of insulin. I forked over $200. If I was uninsured, I would’ve had to pay $1,236.15.

I don’t know any water in the universe that costs $200, let alone $1,236.15.

The title of this blog post could be a book title…in fact, I bet there are people who really could devote entire books to this subject. Rightfully so.

I’m not going to mince words here: Under our current President, the cost of insulin has not lowered. And if you think I’m exaggerating his lack of delivery on his promise to do so, then please read the following from my friends at T1International regarding executive orders that were released in July (if you don’t have time to read the entire thing, please read the first paragraph):

On July 24th*, President Trump released four executive orders intended to lower drug prices, including two targeted directly at lowering the cost of insulin for patients who rely on it. Despite his assertion that these orders are intended to “completely restructure the prescription drug market,” these orders will not do anything to fix the underlying cause of the insulin crisis in America. Patients will still need to wait months for the rulemaking process to run its course, and likely even longer after that if these orders end up in court. While T1International is glad that the administration has stated that making insulin more affordable is a priority, these orders miss the mark. We don’t need incremental bureaucratic steps as an election approaches – we need transformative change that will make our medicine more affordable now.

The two orders that are most relevant to the lives of people with diabetes are the order that requires federally qualified health centers (FQHCs) to allow patients to purchase insulin directly from the FQHC at a steeply discounted price, and the order that builds on the plan released by the Department of Health and Human Services to allow for the importation of drugs such as insulin from Canadian manufacturers. Neither order would hold Eli Lilly, Sanofi, and Novo Nordisk accountable for their price gouging, nor would they do anything to reduce the list price of insulin, which has soared by well over 100% since 2012.

As previously noted on T1International’s blog, getting insulin through a 340B pharmacy can help patients to afford this life-sustaining medication. On the surface, President Trump’s order to make it easier for patients to purchase insulin through an FQHC seems helpful. However, his executive order ignores that FQHCs were never the problem with the 340B program in the first place. It is hospitals that are most responsible for taking the discounts offered by the 340B program, and they use those discounts to generate profits, rather than serve patients.

Similarly, #insulin4all advocates know better than most that the insulin they need, which costs hundreds of dollars per vial in the United States, is more affordable just across the border in Canada. However, the Canadian government has already made clear that they are not interested in exporting Canada’s supply of medicine en masse to the United States just because the U.S. government refuses to confront Big Pharma and lower drug prices for the exact same medicine, rendering this policy ineffective on a broad scale.

99 years ago today, Frederick Banting and Charles Best first isolated insulin, which would soon make it possible for people with diabetes to manage their condition. But since then, unchecked corporate greed has put this life-saving medication out of reach for too many people. President Trump was correct in diagnosing the problem and its solution before he even took office when he said that pharmaceutical corporations are “getting away with murder.” Since then, he has considered every policy option available to bring drug prices down except for the most obvious: action that will reduce medication list prices for everyone, including people without insurance. If the president really wants to lower the price of insulin and address the crisis of high drug prices, he already knows the solution; the question is whether he has the political courage to pursue it.

*On September 13, President Trump released a new executive order that would implement a “most favored nation” price for drugs under Medicare Part B and Part D. Patients need relief from predatory insulin prices now, but the President’s executive order won’t deliver. While this Executive Order could dramatically lower insulin costs for some senior citizens if it goes into effect, that could take months or years if it ever happens at all — and patients don’t have that kind of time to wait for change. Rather than make announcements he can tout on the campaign trail, the President should use his existing authority under federal law to bring down the price of insulin immediately.

T1International Statement on Executive Orders, updated September 14, 2020

Frederick Banting said it all when he remarked: “Insulin does not belong to me, it belongs to the world.” And that is a sentiment that I will be taking with me when I go to vote this November.

T1International Releases Important Statement on #insulin4all

This was originally published on the T1International blog on August 21, 2020. I am sharing it here today because it is incredibly important to me that you, readers of this blog, and the entire diabetes online community collectively understand how serious this matter is to me. I firmly believe that there is no place for bullying, hate speech, or disrespect in any type of interaction, regardless of when or where it takes place. It truly sickens me to think that anyone has tainted this hashtag with ugly personal attacks and I implore anyone using this hashtag to use it with the utmost respect and kindness – anyone who chooses not to do so diminishes the message behind this movement and harms the diabetes community as a whole. As for myself, I can promise you that as both the creator/writer behind Hugging the Cactus and as a T1International digital advocate, you can always expect me to interact with others in an open-minded, respectful, compassionate manner, no matter what.

T1International Statement on #insulin4all

T1International has been made aware of a recent increase in hateful speech, as well as disrespectful and non-collaborative behavior on the #insulin4all hashtag. While hashtags cannot be owned by anyone, T1International’s global work is tied to #insulin4all. As one of the creators of the hashtag, we want to acknowledge our concerns over these issues and set clear lines about what we stand for as an organization, and what we do not. We do not stand for or tolerate bullying, hate speech, abusive language, or words or actions that are intended to demoralize others.

The History of #insulin4all
The #insulin4all campaign was launched in the lead up to World Diabetes Day in 2014 by T1International and other organizations. Although World Diabetes Day began in 1991 in order to “draw attention to issues of paramount importance to the diabetes world”, the organizations felt that the true spirit of the day had been lost. The campaign was an effort to emphasize that people living with diabetes struggle to survive or face extreme difficulties because they cannot afford or access their life-saving insulin, blood glucose test strips, or basic healthcare. Others are caught in conflict or living in countries where there is little humanitarian assistance for people with diabetes. Many suffer complications and premature death without affordable or sustainable access.

The #insulin4all hashtag caught on quickly, and, in many ways it took on a life of its own. Advocates across the globe use the hashtag on various online platforms and in-person as a rallying cry to support their efforts to improve the lives of people with diabetes.

T1International’s #insulin4all Chapters
T1International’s USA Chapters and some of our Global Chapters have #insulin4all in their names, which reflects the grassroots nature of the movement and the volunteer efforts, though the Chapters are supported by the T1International Team. All Chapter Leaders and Leads sign an agreement to abide by our policies and values. Through this agreement, they are specifically required to act in a way that is respectful and that represents T1International in a professional manner, honouring T1International’s values and upholding the charity’s reputation. Chapter Leaders and Leads are also provided with guidance and tools for engaging in-person and digitally in ways that reflect the respectful, inclusive, and intersectional movement that we are collectively building.

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What #insulin4all Means to T1International
T1International sees #insulin4all as a community-led effort that is not solely focused on one person, entity, or country, but is a collaborative effort to bring equality to all people living with diabetes. This involves not only a fight for equality through affordable access to insulin, supplies and healthcare, but equity and inclusion when it comes to people with all types of diabetes, from all socioeconomic backgrounds, races and ethnicities, gender identities, countries of origin, and more. There is a lot of work to be done, and we believe in doing that work together wherever possible. We believe in doing it respectfully, transparently, and in a way that upholds our values.

The #insulin4all movement has built significant power, and there is a great need to use that power responsibly to advance the cause. When that collective power is focused on those responsible for the problem that have the power to fix it – that means Eli Lilly, Novo Nordisk, and Sanofi, along with other actors that want to profit on insulin even if it means people die because of its price – it is unifying for the community, and serves as a force for driving change.

When that power is focused on people who aren’t in a position to make change themselves as individuals – and especially when that focus intersects with other sources of power like white privilege, economic privilege, hetero/cis privilege, and other types of privilege – it ends up being a source of division and moves us further from our end goal of affordable insulin. Holding the Big Three and their executives accountable is categorically different from attacking individuals who aren’t in positions of power.

What #insulin4all Does Not Mean to T1International
As a small team of staff that are deeply committed to the values outlined, it pains us to see the hashtag and, thus, the affiliation with T1International’s name being used in harmful ways. It is worth reiterating: we do not stand for or tolerate bullying, hate speech, abusive language, or words or actions that are intended to demoralize others. Using the #insulin4all hashtag to attack people of color, members of the LGBTQ+ community, any marginalized group – or any person or group for that matter – is actively harmful to the movement. We do not believe in meeting problematic behavior with problematic behavior. We believe in calling out unhealthy or damaging behaviors – like the pharmaceutical industry’s price-gouging – in ways that are bold and that ignite change to improve the lives of patients, but are not vicious.

We hope that the #insulin4all community, and whatever it means to each member of that community, can come together over the shared aim of improving the lives of people with diabetes, starting with making insulin affordable and accessible to everyone who needs it. As the fight continues, we ask that our volunteers and supporters approach these issues with the same outstanding passion and commitment we see every day, while being open-minded and respectful in their approach.

Fighting for LGBTQ+ Justice and #insulin4all

This post was written by Quinn Leighton and it was originally published on the T1International blog on July 8, 2020. June may have been Pride Month, but it’s important every day to understand the challenges faced by the queer and trans communities on a daily basis and raise awareness. Thank you to Quinn for sharing your story, fighting for LGBTQ+ justice, and supporting efforts to make insulin available and affordable for all.

I remember stepping up to the counter to check into an appointment with a new medical provider, when the woman at the desk asked me to step to the person to her right saying to her colleague, “Can you help this…” I had to finish the sentence for her, “person. I’m a person.”

I have often felt fear and uncertainty as a person living with Type 1 Diabetes: when I wake up in the middle of the night confused, reaching for my glucose tablets because my blood sugar reads between 40-50; when my spouse is driving me to the ER because I can’t stop throwing up or get my ketones down while I’m home sick with the flu; and of course the overwhelming financial burden we face daily and monthly in order to stay alive and as healthy as possible.

All of this is assuming we don’t face additional barriers such as discrimination, bias or mistreatment the moment we walk through the front door of a pharmacy, or a provider’s office simply based on who we are and how we show up in the world. For people in the LGBTQ+ community, such as myself, this fear is real and based on lived experience. I am queer, non-binary and married. I’m also white, and acutely aware that while my experiences have filled me with anxiety and have led at times to delaying medical care, I recognize I have not experienced medical racism in the way an LGBTQ+ person of color likely has.

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“We must recognize LGBTQ+ people often do not receive the same level of treatment or care that non-LGBTQ+ do, and LGBTQ+ people of color – particularly transgender women of color – are at the highest risk of discrimination, mistreatment and fatal violence.”

Delaying care due to these fears as a queer or trans person is not uncommon in any medical setting, however if you delay care living with diabetes, it can lead to life-threatening complications or even worse. It’s imperative that LGBTQ+ people living with diabetes and other chronic illnesses have the security, affirmation and resources to access the care they need.

We also know that LGBTQ+ people, particularly transgender and non-binary people make less money, despite having the same, if not higher levels of education as their cisgender, heterosexual peers. Even with a patchwork system of employment protections across communities, states and now federally; discrimination in the workplace is still very real. Among LGBTQ+ people, cis-bisexual women and transgender people have particularly high rates of poverty at 29.4%.

Together we can work toward greater health equity, but collectively, we must recognize the disproportionately high impact of poverty, violence, prejudice, mental health issues, discrimination and fear that so many LGBTQ+ people face living with diabetes. We must recognize LGBTQ+ people often do not receive the same level of treatment or care that non-LGBTQ+ do, and LGBTQ+ people of color – particularly transgender women of color – are at the highest risk of discrimination, mistreatment and fatal violence.

Understanding these inequities is paramount in moving forward in advocacy for affordable and accessible insulin for everyone who needs it, particularly those most vulnerable to bias, mistreatment and discrimination. This includes healthcare policies protecting people with pre-existing conditions and protecting LGBTQ+ people from discrimination when accessing healthcare. Efforts to repeal or rollback protections put into place through plans such as the Affordable Care Act that seek to provide care to people who need it most, particularly during a pandemic, is simply cruel and will only result in more harm and negative health outcomes. Non-discrimination protections are critical in providing the care needed for so many LGBTQ+ people living with a pre-existing condition such as diabetes, who already face a gamut of uphill battles in other areas of daily life.

Queer and trans communities are formidable. They overcome extraordinary obstacles to gain economic self-sufficiency, put a roof over their heads, maintain their health in the best of conditions, and simply exist and live in this world. What I’ve really noticed most is the courage and resiliency to navigate these barriers while celebrating community and showing up as our true and whole selves.

I recognize structural and systemic change won’t happen easily or quickly; however, I am hopeful that the movements around us will support communities of color, particularly black and indigenous people fighting for their lives and Asian people under attack due to prejudice and misinformation surrounding the COVID-19 pandemic. I am hopeful people will elevate their support of LGBTQ+ people and those most vulnerable within our community while working to make insulin affordable so that no other person living with diabetes is forced to make life-threatening decisions. And it is my hope that this momentum of support will carry us forward toward justice.