People with Diabetes are Good at Minimizing

I attended a Massachusetts #insulin4all meeting recently that got me thinking about how good people with diabetes tend to be at minimizing.

I speak for myself, and some other people with diabetes I know, when I say that we’re really good at making it seem like it’s not a big deal. We manage a 24/7, 365 chronic condition like it’s not the full-time job that it is. I have family and friends who occasionally pick up on this and marvel at my ability to be present in a myriad of social situations while discreetly watching my blood sugar levels or calculating insulin dosages. I rarely act like diabetes is as serious as it is and that’s because I’ve become an expert at making it seem like small potatoes in my life.

And I’m not just good at minimizing my diabetes – I’m also highly proficient in minimizing the fact that it has forced me to make difficult decisions in my life, particularly when it comes to financial choices.

Over the years, I’ve become excellent at downplaying the impact of diabetes on many aspects of my life.

During this #insulin4all meeting, I was conversing with other chapter members about whether or not we, as individuals, have struggled to afford insulin. And a lot of us confessed that we’ve been pretty lucky and have never really had to resort to making truly difficult choices when it comes to affording insulin or other diabetes supplies. Despite that, we feel passionately about those who struggle to gain access because we understand how high the stakes are – it’s literally a matter of life or death.

But just because we’re able to (for the most part) afford insulin, that doesn’t mean that we haven’t had to make certain choices that we might not have had to make if we didn’t have diabetes.

For example, when it comes to my career, I’d never consider a job that doesn’t offer solid health insurance plans. Even if my strongest desire was to be a freelance writer, I wouldn’t go through with it because I know that it would be challenging to figure out my health insurance. And I know that the minute I run out of FSA dollars each year, I start thinking about setting money aside just to cover the costs of my diabetes supplies…which means that instead of buying some new clothes or planning a weekend getaway, I sometimes have to sacrifice those luxuries in favor of ensuring I have enough money to cover my fixed expenses as well as my diabetes medications.

When I think about it, of course I realize that it’s not fair, but haven’t really considered it before because this is just how it is. I’m used to it. And so are many other members of my #insulin4all chapter. We’re all accustomed to having to make certain choices about our lifestyles or spending habits that minimize the larger issue of insulin affordability. We’re used to it, even accepting of it, but that doesn’t make it right and it certainly underscores the terrifying fact that too many people simply can’t afford insulin and have to make much tougher decisions in order to get it.

It’s time to become a little less good about minimizing and better at vocalizing – not just the seriousness of diabetes, but also the dire nature of insulin affordability and access that affects millions around the world.

Underrepresented Communities and Navigating the System – A Post by Alzahrra Almajid

This was originally published on the T1International blog on June 8, 2021 and it is written by Alzahrra Almajid. I decided to share it on Hugging the Cactus because it is my goal to understand the challenges faced by the BIPOC community and learn what can be done to help. Alzahrra’s experience is a massive wake-up call that we still have a long way to go when it comes to advocating for marginalized groups. Thank you to Alzahrra for sharing her story.

I was diagnosed with type 1 diabetes when I was 8 years old. Having parents who were immigrants from Iraq and people of color was especially hard in navigating diabetes. My mom dealt with a lot of demeaning comments from healthcare providers because she was not taken seriously. In the initial months after diagnosis, her ability to care for me and help manage this new disease was often questioned. It felt like they thought she was too incompetent to understand how diabetes is treated. I remember how disrespected and vulnerable I felt because of the tone doctors spoke to us with.

When I was about eleven years old, I was hospitalized for having a high fever and diabetic keto-acidosis (DKA). On the second day of my stay at the hospital, a nurse asked me if I was purposely not giving myself insulin because it “did not make sense” that my blood sugars were still elevated. I was stunned by how demeaning that comment was. I felt so belittled in that moment that it has stuck with me all these years. Why would I want to feel that way? How could I fake it if the nurses were the ones administering my insulin at the hospital? It turned out I had an infection that was causing the high blood sugars and fever so no, I was not purposely not giving myself insulin. After that day, I started to notice how different my life was compared to other diabetics I met.

Alzahrra noticed her experience with diabetes was very different compared to that of other people with diabetes she has met.

There was not much awareness about type one diabetes in my community so it was difficult for me and my mom to find resources about what treatments were out there. We were not aware of what an insulin pump was or what a continuous glucose monitor (CGM) was. We had no idea that they even existed until I began to research diabetes on my own when I was about eleven years old. Only after I mentioned insulin pumps to my doctor, did we start discussing them as a viable option. When I learned about CGMs later on, I wanted one so bad because I was certain it would help my elevated A1cs. However, after hearing how much it cost, I knew that it was nearly impossible to get it.

Seven years after my diagnosis my brother was also diagnosed with type 1 diabetes which made the already bad financial burden worse. Although all people with diabetes struggle with how expensive diabetes can be, immigrants and people of color often do not have access to quality health insurance (or any access) so they are less likely to benefit from advanced diabetes technology. As I got older I began to understand how difficult it is to navigate a system that makes it harder for people in underrepresented communities to get adequate care.

I knew from early on that I wanted to advocate for marginalized groups. Being a person with type 1 diabetes is already mentally draining and expensive. When you add the challenges of navigating through racial or ethnic disparities, diabetes becomes agonizing. Black, Indigenous, and People of Color (BIPOC) deserve to have representation in the diabetes community and have their concerns addressed. They deserve the same level of care and access to resources that their white counterparts have. I chose to become a Communities of Color Lead for the Illinois #insulin4all Chapters because I want to influence positive change by making sure BIPOC are not left out of the conversation.

Do You Know About Monogenic Diabetes?

This post was originally published on October 28, 2019 here on Hugging the Cactus. I decided to share it again today because I think it’s important to raise awareness that there are more than two types of diabetes. As I reread it, I realized that even someone like me, a person who has diabetes, still has a long way to go when it comes to understanding how each type differs from one another. Read on to learn more…

It was the statistic that impelled me to learn more information:

“Approximately 1 in 50 people with diabetes have monogenic diabetes.”

Mono-what?

I was staring at the giant banner bearing this statistic in the exhibition hall of the Friends for Life Falls Church conference. I read it a few times before I finally walked over to the table at which two women were seated. One of the women was an associate professor at the University of Maryland School of Medicine and a human geneticist. The other woman was a typical T1D for several decades of her life before she received a proper diagnosis of monogenic diabetes. Ever since that revelation rocked her world, she’d gone off insulin and took sulfonylureas (a type of drug that stimulates the pancreas to release insulin) to maintain healthy blood sugar levels.

Just how many types of diabetes are on the spectrum

Naturally, the whole concept was simultaneously foreign and fascinating to me. I wanted to know more.

As I discovered that evening, monogenic diabetes is best explained by its name. “Mono”, of course, meaning “one”, and “genic” meaning “relating to genes”. Therefore, it’s a type of diabetes that is caused by changes in a single gene.

Here are some “fast facts” that I learned about monogenic diabetes:

  • Most cases of it are misdiagnosed as type 1 or type 2 diabetes
  • Proper diagnosis of monogenic diabetes sometimes changes treatment from taking insulin to a pill, or no medications at all
  • There is an emerging clinical spectrum when it comes to genetic testing for diabetes. At the time of this writing, the following situations are when it’s recommended to undergo a genetic test to determine whether an individual has monogenic diabetes:
    • The individual received a diabetes diagnosis within the first 6 months of life
    • The individual’s diabetes does not follow typical characteristics of type 1 or type 2 diabetes – this might mean that the individual is non-obese or has a strong family history of diabetes
    • The individual has a stable fasting blood glucose between 100 and 150 mg/dL
  • From the pamphlet I picked up that featured stories from individuals with monogenic diabetes: “I was 21, taking metformin and aspirin daily and sitting in a type 2 diabetes class with three much older participants. Despite dropping my BMI from 26 to 23 my A1c had risen to 6.4%, not a high number, but certainly one worth watching. I knew of no one else in my family with diabetes. Eventually I did get that dreaded diagnosis, and because it didn’t seem to be type 1, they said it was type 2. Fast forward 2 years and my sister now had ‘GDM,’ (gestational diabetes mellitus) twice, my dad finally admitted to having ‘borderline sugars’ since he was in college, and I got my genetic results back saying I had GCK-MODY (GCK being a gene that can have a variant that triggers monogenic diabetes, MODY being maturity onset diabetes of the young). It changed everything: gone were the pills, gone was the restrictive diet and exercise plan, and when my son was born with high blood sugars, we did nothing, because he was like me, and there is nothing that needed doing.”

Now, if YOU are like ME, all of that might read like some mumbo-jumbo. It took a few weeks of me reflecting on it to decide whether I should even write this post, because I feared that it might cause some people to be paranoid about whether or not they were misdiagnosed with their diabetes (I admit that I was worried about that for myself in the days after learning about monogenic diabetes).

But the big takeaway here that I thought should be captured in a blog post is that it’s important for patients to advocate for themselves when things just don’t add up. There were a few more stories from individuals with monogenic diabetes in the pamphlet I got, and there was a recurring theme in all of them: Doctors kept telling these patients that their diabetes was atypical, but it wasn’t until these patients sought genetic counseling that they began to understand why.

It goes back to what I said at the beginning of this blog post: I find this variant of diabetes to be intriguing. It makes me wonder whether we should continue to define diabetes in such a black-and-white manner (either you have type 1 or type 2). I’m curious if diabetes is more of a spectrum of diseases that present similar symptoms, but require different levels of treatment and management. It’s certainly interesting food for thought, and considering that diabetes continues to be a semi-mystifying condition to many researchers and doctors, it won’t surprise me if future studies eventually uncover more types of diabetes.

Anyways, enough of my musings on genetic testing and speculations on how many types of diabetes are really out there. If you’d like to know more about monogenic diabetes, I was guided to several different resources. Check them out below:

Type 1 Diabetes, Disability and the Role of Legislation in Advocacy – A Post by Pramita Jasuja

This is a post by Pramita Jasuja that was originally published on the T1International blog on April 9, 2021. I am sharing it here today because I thought it was an interesting take on how type 1 diabetes is (or in this case, is not) recognized in another country. Thank you to Pramita for sharing her story and explaining the importance of legislation in advocating for people with diabetes.

Every new type 1 diabetes (T1D) diagnosis can be intimidating, both for the person and the family members. Many people with T1D are told they should be able to live a “normal” life and that they can do everything that a person without diabetes can do.

As a newly diagnosed child with blood sugar levels of over 570mg/dl, all that was on my mind was T1D. But a year post-diagnosis, when daily needles became the new normal, I was told by my family that I was completely fine and that there “was no need to tell anyone” about my medical condition. “I am normal” was stuck in my mind and I took it very seriously. So much so, when my endocrinologist asked me as the “patient” to sit near her chair, I replied: “I am not a Patient.” Both my parents and the endo smiled.

It’s been 7 years since that incident and I now reflect on my statement, especially over the word “normal”. Calling yourself “disabled” can have negative connotations attached to it. People often refrain from using that word, as if living with a disability is abnormal. Though if we do this, we deny a part of us. When it comes to legalities, the word “disability” is significant. Disability legislation considers people living with disabilities as subjects who possess rights capable of claiming that they have a disability – not those simply given charitable treatment. This was spelled out in the UN Convention on the Rights of People with Disabilities (CRPD), the human rights convention that hit the highest number of signatories.

I live in India. It’s one of the countries that has ratified this convention, but it’s also a country where myths and stigma overtake the real issues. A report by WHO found that in low-income countries where superstitions surrounding diabetes are common, the fatality rate is high. India is no exception. Due to a lack of proper health care facilities and a lack of national registry exclusively for T1Ds, children in the country are facing late diagnosis and even death. Considering the level of poverty in the country, blood test strips and continuous glucose monitors (CGMS) should be subsidized. Unfortunately, that is not the case. People with T1D are rationing them, which makes diabetes management challenging. Plus high blood sugar levels and/or ketones hinder the ability to perform “normal” day to day activities.

Insulin is like water. Someone with T1D can not live without it, but medical insurance in India does not cover it, and not every type of insulin is subsidized. So for those with T1D and financial struggles, there are the worries about the price of life-giving insulin and medical supplies.

After considering these facts, let’s look at the definition of “person with a disability” under the Rights of People with Disabilities Act (RPWD) 2016 that was enacted after India ratified CRPWD: “a person with long term physical, mental, intellectual, or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.”

“When it comes to legalities, the word “disability” is significant. Disability legislation considers people living with disabilities as subjects who possess rights capable of claiming that they have a disability – not those simply given charitable treatment.”

The sad part, however, is that T1D is not considered a disability under this Act, even though the current problems faced by people with T1D in India do “hinder (their) full and effective participation in society equally with others”. I’m arguing that you can not tell every T1D to live “normally” when the condition doesn’t always allow for it. The community is suffering silently and legislative action is being denied.

It is through the recognition of injustices and assertion of our rights that we can ensure equal opportunities. T1D advocacy is emerging in India and as a collective we are highlighting these issues. Change is happening. In 2020 in Kerala High Court, a public interest litigation was filed over the issue of including T1D in the list of disabilities and creating a national registry for people with T1D. This step is important. Recognition of T1D as a “disability” would obligate the government to fulfill what is laid down in the Act, for example providing affordable and accessible health care, ensuring the implementation of non-discrimination clauses and creating special faculties at educational institutions.

Seven years after that endo visit incident, even though I will never be able to deny that I am a patient, what I can do is advocate for patient rights. At a macro level this means standing up for the community. Recognition under the legislation of people with diabetes as those with disabilities is the first step, a chapter in the book of advocacy in my country of India.

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!