Reflecting on National Diabetes Awareness Month 2021

Well, we’ve arrived at the end of another November, which means National Diabetes Awareness Month is drawing to a close.

What a time it’s been.

Another NDAM has come and gone.

I don’t know about you or anyone else, but it seems like all of my social media feeds were saturated with diabetes content all month long. This is due in part to my job, for sure, but outside of that it felt like diabetes was everywhere online. And overall, that’s a really great thing! To me, it shows that our community has a great sense of pride in our ability to be advocates and to dispel myths about a largely invisible and mostly misunderstood chronic illness.

The teensy-weensy downside to all that, though, is that I felt like a bit of a failure compared to everyone else.

Like I said earlier this month, I simply didn’t have the time or bandwidth to commit to anything specific for NDAM. The desire was there, but I didn’t think it would be right to participate in any daily postings or activities if the intention behind them was lacking authenticity. In other words, I didn’t want to be going through the motions this month of being a “good” advocate, I wanted anything that I did to serve the dual purpose of coming from the heart while also making a positive impact in the diabetes awareness space.

I’d like to think that I accomplished that, but as I inevitably saw the countless other posts from all the other incredible diabetes advocates in our online community, I still couldn’t help feeling like I could’ve tried harder. I could’ve devised a plan ahead of time to do something more significant…but I didn’t.

I guess it’s beginning to dawn on me that diabetes blogs are fewer and far between than they were a mere 5 years ago. I know there are other devoted diabetes bloggers out there, but it feels a lot lonelier than it did when I first started as people turn more and more to the more visually stimulating environments of Instagram and TikTok. Because of this, I think I’m my own worst critic – because I choose to blog about diabetes instead of posting about it in any other format, I fear that I’m not having the impact that I yearned to have on our community, thereby rendering anything I have to say on here semi-pointless.

However, just because I’m experiencing these feelings, it doesn’t mean I’m ready to cease blogging or believe that my form of diabetes advocacy is unacceptable. In fact, I think that in writing this post, I’m also realizing that diabetes advocacy is just like diabetes itself – there’s no one-size-fits-all formula. It will look different on all individuals.

So maybe that’s the attitude and energy I carry away from this NDAM and into the coming year…one that allows me to embrace the kind of diabetes advocacy that I enjoy, that I (hope) am good at, and that continues to connect me with others all around our community.

What I Wish People Knew About Life with Diabetes

As National Diabetes Awareness Month speeds by in a lightning-fast pace, I keep finding myself going back to this question: What do I wish people knew about life with diabetes?

My answer to this question changes depending on the kind of day and experiences I’m having with my diabetes. For example, on the occasions that I have a pod failure or my Dexcom loses signal for hours, I wish that people knew life with diabetes is marked by a dependence on technology. When I have several bad low blood sugars in the middle of the night, I wish that people knew life with diabetes means you lose out on a lot of sleep. And the times that it seems like I live at the doctor’s office or spend all my spare time on the phone with insurance companies, I wish that people knew life with diabetes can be a giant (and expensive) time suck.

While there’s obviously a lot that I wish people knew about life with diabetes, I think that I can identify the number one, most important thing that I wish people knew…and that is: life with diabetes is unpredictable. No matter how many years I’ve lived with it, no matter how often I think that I’m doing the right thing in my care for it, it can still prove me wrong all the time. It’s challenging, frustrating, stressful, and draining, and I really wish that people realized how much work it requires to have diabetes. It’s not as simple as counting carbs, injecting insulin, and eating right – it demands mental and physical energy in order to care for it properly, and people living with diabetes don’t ever get a break from that.

I do my best to smile, even when diabetes is at peak unpredictability.

Despite that, I try to smile through it all…because diabetes and its curveballs are a lot easier to handle with a positive mindset. But that doesn’t mean that I don’t wish that people knew how difficult it can be, too.

Happy National Diabetes Awareness Month!

It’s that time of year again – National Diabetes Awareness Month!

Did you know that the blue circle is the universal symbol for diabetes? It represents the unity of the global diabetes community in response to the rising number of people affected by diabetes.

I’m not sure if it’s because I work for a diabetes organization now, but sheesh, this month seems to have arrived more suddenly than it ever has. I’d say it’s caught me off guard, but after literally months of preparing for it as part of my job, it’s really just got me marveling over how fast time flies.

It’s also got me reflecting on how I’ve participated in NDAM in the past. Previously, I’ve done daily postings on my Hugging the Cactus Instagram account and replied to various prompts throughout the four weeks here on the blog.

This year, I’m not so sure I have the bandwidth to dive so deeply into the spirit of the month – but that doesn’t mean I’m mentally checking out of it altogether.

Rather, I’m plan on being more intentional in my approach. Instead of replying to daily prompts (that, over the course of the month, start feeling like homework – in other words, an unenjoyable task), I’d like to post when I feel like I actually have something to say. I don’t want to post filler content, I want to post things that are meaningful and capture my feelings about diabetes, NDAM, and the broader diabetes community.

That’s not a knock on the everyday post inspiration that many members of the DOC take part in – I think it’s wonderful that they have fun with it and use it as a very effective way to raise diabetes awareness throughout the month. It’s just that for me, as someone who’s been part of digital NDAM activities for the better part of a decade (!!!) now, it’s time that I mix up my routine a bit and also step back so I don’t spend all of my mental diabetes energy on NDAM in lieu of my actual diabetes care.

Here’s to deliberate diabetes awareness and care this month!

Redirecting Guilt into Action: A Post by Elizabeth Roosevelt

This post was written by Elizabeth Roosevelt and it originally appeared on the T1International blog on July 16, 2021. I wanted to share it here today because Elizabeth did a beautiful job of summing up similar sentiments that I’ve personally experienced regarding insulin affordability and access. Thank you for sharing, Elizabeth, and know that many others feel the same way as you!

“We can discuss our technology, diabetes and Covid-19, our experiences with insulin affordability; anything you would like,” Beth, who oversees and organizes the T1International Digital Advocates, echoes through the Zoom during our Digital Advocate meet and greet.

A little embarrassed, I think to myself, “please, not our experiences with insulin affordability.”

As someone living with type one diabetes for fourteen years and a Digital Advocate for T1International since August 2020, it sounds like a conflict of interest that I wouldn’t want to share my experiences accessing insulin – a drug that saves my life each day. After all, this is a major goal of T1International: to advocate for global access to insulin.

It sounds like I shouldn’t be an advocate.

“This prompted me to seek organizations like T1International where I could not only learn more about healthcare inequalities that impact my own community but also fight for change.”

In reality, I’m just a little nervous. I am nineteen years old, was diagnosed with type one diabetes at age five, and have always lived in the United States. Growing up, I had no idea where my insulin came from, but I knew it would be there, delivered to my front door in an unassuming cardboard box with a few neon biohazard labels slapped on the top.

Every time I opened the refrigerator to grab insulin for a pump site change, a few vials of Novolog would be perfectly lined up on the top shelf. Each time I swung the cabinet open to reach for a new infusion set, the supplies were there, waiting for me. When packing for vacation, I never thought twice about having enough supplies back-stocked in my house to take with me.

When I wanted to switch from the Medtronic pump to the OmniPod, the thought that the OmniPod might be more expensive never crossed my mind. Money didn’t grow on trees, but my parents always made it happen. And for that I am eternally grateful and blessed.

So, if the other advocates started sharing their experiences with insulin affordability on that Zoom, I’m not sure what I would’ve said. That I’ve never had an issue with it? That I didn’t know insulin affordability was a pressing problem in the United States until a few years ago, when Instagram posts by Senator Bernie Sanders and diabetes influencers began to pop up on my feed, explaining that Big Pharma was killing Americans, especially those with diabetes? It was only when our country’s flawed healthcare system made headlines that I noticed I seemed to be in a position many American diabetics were not.

This ignited a spark in me. It didn’t seem fair that just because I was born into a family that could afford private insurance to cover my diabetes costs I could do just about anything a person without diabetes could do. I could study and work to the best of my ability because a high blood sugar wasn’t slowing down my mind. This prompted me to seek organizations like T1International where I could not only learn more about healthcare inequalities that impact my own community but also fight for change.

Because I’ve had access to technology that allows me to sleep through the night and insulin delivered to my doorstep, I sometimes feel like less of a person with diabetes (PWD) and guilty of my privilege. While all people with type one struggle with the condition in some shape or form, I find myself invalidating my challenges because I tell myself I have it much easier. And in many ways, I do. I’ve grown up as a privileged white person in an affluent neighborhood, sheltered from the reality that very few people have access to insulin as I do, especially under the heavy, capitalist-driven policies of the United States.

However, I’ve learned that having it easier than others is not something to be embarrassed about nor does it make me less of a PWD. Instead, it is a responsibility.

It’s crucial that those of us who have access to insulin use our platform and privilege to fight for our community and for the people with diabetes who are solely focused on surviving. We must serve as the voice for the people with diabetes who can’t use their own because they’re bogged down working three jobs and choosing between putting food on the table for their family or insulin.

Maybe this fighting takes the form of educating our friends, family members, and colleagues about the disparities in insulin access through discussion or educational posts on social media. Or maybe, it’s collecting near-empty insulin vials and diabetes supplies in your community to help provide short term relief to struggling diabetics. Or perhaps, it’s calling the offices of or requesting meetings with your districts congressional representatives to urge their support of regulating legislation.

Whichever way our fighting takes shape, we must redirect the guilt we feel over our privilege into a heightened sense of advocacy, into change, into a fire that spurs our movement forward and pushes the established healthcare system towards equality.

#insulin4all truly means for all, and until all those who need insulin have access to it, our work isn’t done.

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.

Insulin is a Right for Incarcerated People with Diabetes – A Post by Elana Megerian

This article was written by Elana Megerian and it was originally published on March 24, 2021 on the T1International blog. I’m re-posting it here today because, quite frankly, I found it disturbing. I had no idea that safely navigating encounters with law enforcement was a problem for the diabetes community. I can also admit that I made assumptions based on the headline of this article, but decided to stick with it only to discover that my assumptions were wrong and that the criminalization of diabetes symptoms is a real issue. If you have any doubts about this article, I encourage you to read the full piece so you can understand what’s going on and the steps that should be taken to address it.

When widespread Black Lives Matter protests erupted in the summer of 2020, the diabetes online community began crowdsourcing ideas about how to safely participate. Concerns grew in response to an incident in which police confiscated the supply bag of a protestor with type 1 diabetes, despite her consenting to a search and communicating her need for glucose.

A viral video of the encounter revealed another pressing need of the diabetes community: how to safely navigate encounters with law enforcement. This led me down a rabbit hole that heightened my alarm as I found story after story of police and prisons withholding insulin.

In 2013, footage from Rikers showed Carlos Mercado repeatedly vomiting, fainting, and displaying signs of severe illness in the presence of corrections officers. At age 45, he died after having his insulin withheld for 15 hours.

In 2014, William Joel Dixon was found dead in his cell after his insulin was withheld for seven days. Records show that his blood sugar was only checked once during that week. He was 28 years old.

In 2015, Michael Robinson died after being put in solitary confinement in response to his pleas for insulin. He was 33.

In 2016, Morgan Angerbauer’s death in an Arkansas jail cell was caught on video. Records show that she had been calling out for help, but was ignored. She received no insulin for 23 hours, and her requests for blood glucose checks had been denied. She was only 20 years old.

In all these situations, staff were aware that the victims required insulin to live. In all the cases, insulin was withheld long enough to induce diabetic ketoacidosis, a potentially fatal complication that usually occurs in people with type 1 diabetes who do not have regular access to insulin. It is a torturous and almostly completely preventable cause of death, yet it is far too common in US prisons. Since 2008, at least 12 such deaths related to withholding insulin have occurred in the state of Georgia alone.

Insulin is a Right for Incarcerated People with Diabetes
“#insulin4all is more than a hashtag: It is a rallying call to everyone impacted by insulin inaccessibility, and a mournful cry for all who have lost their lives while insulin remains clearly in view, but cruelly out of reach.”

Diabetes symptoms have also often been criminalized. In August 2020, Max Johnson, a black man with type 1 diabetes who was having a seizure due to hypoglycemia, was dosed with ketamine by police and Emergency Medical Services (EMS) after his girlfriend called them for help. The same drug that killed Elijah McClain, ketamine was reportedly delivered to Johnson at such a high dose that it rendered him unable to breathe and led to a two-day stay in the ICU. The American Diabetes Association has documented many other cases in which people were denied insulin, or had their diabetes symptoms treated like criminal behavior by police.

Having insulin withheld or having diabetes symptoms criminalized is obviously seriously dangerous, especially for Black Americans who are both more likely to have diabetes and more likely to have violent encounters with police.

These instances flagrantly defy the 8th and 14th amendments of the United States, which protect the right to adequate medical care for incarcerated people as well as those in police custody. Since the law is unequivocal, it is distressing that violations are commonly committed by the very individuals and systems meant to enforce it.

One factor perpetuating this is the lack of recourse for victims and their families. It’s hard to successfully bring a case against the police or a prison. Even if such a case is won, it doesn’t bring back a lost life, reverse damage from chronic hyperglycemia, or ease the trauma of being brutalized by those called in to help you through a medical crisis.

So what can be done? Standards of ethical behavior need to be raised for police, EMS, and corrections officers. Given how common the condition is among incarcerated individuals, anyone working with this population should be educated about diabetes, its basic management, and the signs of acute crisis. Deaths due to subpar medical care aren’t rare occurrences. Chronic illnesses are the leading cause of death in US prisons and are probably frequently covered up.

This disproportionately impacts Black Americans, who have higher rates of incarcerationdiabetes, and diabetes-related complications compared to their white counterparts. Diabetes is too often a death sentence in the prison setting. Advocacy for prison reform is urgent.

It is time to recognize that incarcerated people with diabetes are particularly vulnerable to insulin insecurity. #insulin4all is more than a hashtag: It is a rallying call to everyone impacted by insulin inaccessibility, and a mournful cry for all who have lost their lives while insulin remains clearly in view, but cruelly out of reach. It’s a demand for justice for everyone who needs insulin to survive, including incarcerated people with diabetes. We must find ways to meaningfully include and involve this population in our activism.

Insulin Access Issues Affect People From All Walks of Life – A Post by Laura Nally, MD

This post originally appeared on the T1International blog on March 16, 2020. I wanted to share it here today because it’s a stark reminder that insulin access issues affect all kinds of people: those who do and do not have health insurance, stable jobs, and so forth. Thank you to Dr. Laura Nally for sharing her story about what happened when she went without insulin for a mere four hours, illustrating the serious nature of access to insulin for all.

In 1990, when I was 6 years old, I was diagnosed with insulin dependent type 1 diabetes. In 1996, I could purchase 1 vial of insulin for about $20 without insurance. Today, a vial of the same insulin that I have taken for 24 years costs somewhere between $250 and $400 in the United States. There is no logical or scientific reason for this. To put things in perspective, in Canada, the same insulin costs about 1/10th of the price.

I am a physician and I have health insurance. However, just because I have health insurance does not mean that I can always access affordable insulin when I need it. Recently, at my cousin’s wedding, my insulin pump became disconnected from my body. It had probably become disconnected when I went to the bathroom 2 hours earlier. It was an accident, and this sometimes happens when you sweat a lot. This honest mistake led to a serious medical problem.

I called my doctor immediately to get a prescription sent to the nearest pharmacy. When I went to the pharmacy, I wasn’t due for a refill, so I paid $369 out of pocket for 1 vial of insulin. I didn’t have a choice. I took a large dose of insulin immediately. Unfortunately, it can take up to 3 hours for insulin to work, and in the meantime, I became very sick.

Four hours after I had become disconnected from my insulin pump, I was vomiting on the bathroom floor at the wedding and falling asleep between vomiting episodes. I was confused, my thoughts were clouded, and I could not take care of myself. All of this happened after going just 4 HOURS without insulin!

Why was I so sick? I was starting to develop diabetic ketoacidosis, a life-threatening condition that prevented me from being able to think clearly. I see patients with diabetic ketoacidosis in the hospital frequently; they may be disoriented, confused, combative, sleepy, and even comatose. Even though I was able to recognize the early signs and symptoms, I still became extremely sick within 4 hours. It took me 12 hours to fully recover from this episode. My family woke me up to check my blood sugars, drink water, and take insulin every 2-3 hours overnight.

I am lucky because I knew what to do to treat this condition and that my family was able to help me.

did not have time to call insulin manufacturers and ask for support.

did not have time to figure out how to get a coupon for my insulin online, like many have proposed is a solution.

did not have time to learn how to use Wal-Mart brand insulins, which act completely differently than the rapid acting insulins that I currently take. THIS WOULD HAVE BEEN FAR TOO DANGEROUS.

did not have time to worry about how much I could afford to spend on insulin.

We don’t have time to argue over this issue. We need affordable insulin now. It’s a matter of life and death.

Diabetes does not selectively affect individuals who can afford insulin and have health insurance; it affects people coming from all walks of life, regardless of socioeconomic status.

Many people cannot relate to what it would be like to have your life depend on whether or not you can afford or access a medication. In all forms of type 1 diabetes and some forms of type 2 diabetes, you may be able to survive without insulin for as long as you can survive without water, which could be a few days or up to 1 week. Most people need a minimum of 3-4 vials of insulin per month. If we estimate that 1 vial of insulin can costs $300 without insurance, that would mean out of pocket insulin costs were $900-1200 each month for insulin.

What if a 1 month supply of water cost $900-$1200? Could you survive? For how long? What if you could only receive water once per month, and the amount depended on how much water your doctor thought you needed. What if the doctor didn’t estimate your water needs correctly?

What if there were restrictions on how much water you could receive in a given month by the company that supplies the water? Let’s say you ran out of water too soon and became extremely thirsty, but when you try to get more, you’re turned away because the water you were given last month should have lasted you longer. You will have to wait until next week to get your water. But can you survive until then?

What if the company you get your water from decided to verify that you REALLY need that much water, like insurance companies do with prior authorizations. They will contact your doctor to submit extra paperwork and if the larger supply of water is approved, you will know within 2-3 days. What do you do until then?

Diabetes does not selectively affect individuals who can afford insulin and have health insurance; it affects people coming from all walks of life, regardless of socioeconomic status. It affects our children, our parents and grandparents, our brothers and sisters, our friends and coworkers. No one who is in urgent need of insulin should be turned away from the pharmacy without insulin or the diabetes supplies that they need.