Ask Yourself These 6 Questions Before Trying New Diabetes Technology

This blog post was originally published on Hugging the Cactus on May 13, 2020. I’m sharing it again today because I think it’s super important to weigh the answers to these questions before deciding to try new diabetes technology. This is coming from someone who waited 17 years before she tried her first insulin pump, and even though it has had an enormously positive influence on my life and sometimes I wish I’d tried it sooner, I’m ultimately glad that I waited that long! Read on for more details…

So you want to try your first continuous glucose monitor. Or maybe you’re ready to leave behind multiple daily injections and switch to insulin pump therapy. Whichever diabetes device you’re looking to start using, there are some questions you’ll probably want to have answers to before decide that now’s the time to introduce new diabetes technology into your daily routine.

The following is a compilation of the questions that I thought long and hard about (literally for years) and that I wish I’d thought long and hard about before I made the transition to the OmniPod insulin pump.

1. Am I ready for it? It took me 17 years before I decided that I was ready to try an insulin pump. 17 freakin’ years!!! I spent most of that time being too afraid of introducing such a drastic change to a routine I’d had down pat for such a long period of my life. There are times when I wish I’d gone onto my insulin pump sooner, but ultimately, I’m glad that I wasn’t swayed by my family or doctors to go on it before I truly felt ready. By the time I started using my OmniPod, I had the maturity, responsibility, and emotional intelligence that I felt that I needed for an insulin pump.

2. Will I be able to afford it? Obviously, this isn’t a question that I wondered about when I was younger, but it’s one of the first things that comes to mind as an adult on her own health care plan. We all know that diabetes supplies are expensive, and it seems that the more technologically advanced something is, the more money that has to be forked over in order to obtain it. This isn’t right or fair, but it’s a simple truth and an important one to think about before choosing one pump or continuous glucose monitor over another.

3. Why do I want to start using it? I wanted to start using my OmniPod because my mom experienced great success when she started using it. And I decided to get a Dexcom CGM because I fell in love with the technology after undergoing a trial period with my endocrinologist. In both situations, I felt very much in control of my decision to start using these devices and I didn’t really listen to anyone else’s opinions. But I am very aware of the fact that social media and real-life friendships with other people with diabetes can often sway people in different directions. After all, if I saw a post on Instagram from a dia-influencer who was singing the praises of a Tandem T:slim pump, then I might seriously start thinking about switching to it (this has actually happened to me). But the bottom line is to think about the why – will this device enhance quality of life for me? Will diabetes be easier to manage with it? Will it help me achieve my A1c and/or blood sugar goals? Do I need to add something new to my routine because I’m feeling burnt out by doing things the same way all the time? Knowing why I wanted to use an OmniPod or a Dexcom CGM made me feel that much better during the whole process of learning how to use them – I felt like I had clear goals that would help me navigate the integration of these new technologies into my daily routine.

Did you know that Insulet/OmniPod has demo pods that you can wear? They don’t hold insulin or deploy a cannula, but they can give you a good sense of what it’s like to wear a pod on a daily basis!

4. Will I be comfortable wearing it 24/7? This is a big one! Pods, pumps, and CGMs are very visible, and it can be jarring to go from being “naked” to having bumps and lumps underneath clothes that can get caught on doorknobs, chairs, and the like. Personally, the benefits of my OmniPod and Dexcom outweigh something like this which is a bit superficial, but that doesn’t mean it’s not something to think about. But it’s also worth thinking about comfort and what is least painful when it comes to insulin delivery, so that’s why this is an important question to ask.

5. Do I know anyone else using it who can provide feedback from a patient’s perspective? I’ve talked about this before, but I’m not sure when, if ever, I would have seriously considered using the OmniPod if my mother hadn’t tried it first. The fact that we both have diabetes has probably made us a little closer and strengthened our bond, so if there’s anyone’s opinion that I’m going to trust when it comes to something like this, then it’s hers. I can actually remember her first few weeks on the OmniPod – in which she learned a lot of valuable lessons – and how pleased she was with it once a few months with it elapsed. She taught me the ins and outs of the OmniPod when started to use it, and I’d argue that her advice was more helpful than that of my diabetes educator. So I’d advocate gathering opinions from family and friends (if either is applicable) or the diabetes online community before going on a new diabetes device, in addition to the research component below…

6. Have I done enough research on it? …Like any smart shopper, it’s crucial to really consider all options and research them thoroughly, especially when it comes to the top contender. I definitely did not complete sufficient research before going onto the OmniPod or Dexcom; rather, I trusted that they were just right for me. If I were to switch to something else tomorrow, though, you can bet that’d I’d spend a lot of time scouring the web for every last bit of information on the device so I could make the most informed decision possible.

New diabetes technology can be both scary and exciting. But more than anything else, it can really make life with diabetes much more carefree, and I’m glad that in this day and age there are so many options available to people with diabetes that continue to be technologically impressive

T1International Launches “100 Years: From Gift to Greed” Campaign

The following is a post that was featured on the T1International blog on May 17, 2021. I’m sharing it here today because I want to help spread the word about the Gift to Greed campaign. Learn more about it by reading on (and visiting the links at the end of this piece)…

On Monday, May 17th – 100 years after Banting, Best and Macleod begin their first experiment trying to extract insulin in Toronto – T1International and its advocates around the world launch their year-long campaign. 100 Years: From Gift to Greed will tell the story of insulin’s discovery and how it went from being a gift to the world to a profit machine for the pharmaceutical industry. The campaign will be led by a combination of social media education and a variety of actions.

“A gift to the world has become a tool for price gouging patients all over the world.” – Elizabeth Pfiester, Founder and Executive Director of T1International

Insulin is as essential as oxygen for all patients with type 1 diabetes and many with type 2 or other forms of insulin-dependent diabetes. Globally, insulin rationing is common, and half of those in need of insulin cannot afford or access it. For every two people alive with type 1 diabetes, there is a third who did not survive. The production and distribution of insulin is dominated by three companies – Eli Lilly, Novo Nordisk, and Sanofi – who control more than 90% of the global market.

In the early 1920s in Toronto, Canadian physician and scientist Frederick Banting began working on an idea in the laboratories of J.R.R. McLeod to isolate and extract insulin. Medical student Charles Best and chemist James Collip worked with Banting to test, purify and refine insulin for clinical trials in humans.

After vowing that insulin would not be something to profit on, the discoverers sold their patent for $1 CAD each and eventually passed the rights to the pharmaceutical company Eli Lilly and Co. so that it could be mass produced and widely available. Banting famously said, ‘’Insulin does not belong to me, it belongs to the world.’’

While this incredible advancement was intended as a gift from the discoverers, Eli Lilly and the two other major insulin producers, Sanofi and Novo Nordisk, have turned insulin into profit machines, assisting in bringing in billions of dollars in profit every year. By 1923, insulin was the highest-selling product in Eli Lilly’s history, and profits from it accounted for over half of the company’s revenue. As we know, the prices have continued to skyrocket ever since. Since 1996, the list price of insulin has increased by over 1200% in the United States. Eli Lilly’s Humalog insulin increased in price by 585% between 2001 and 2015 alone.

T1International’s Founder and Executive Director, Elizabeth Pfiester, said, ‘‘A gift to the world has become a tool for price gouging patients all over the world. The greed of the pharmaceutical industry is keeping insulin out of the hands of millions. This greed leads to the loss of countless lives and dampens the dream of Banting and his colleagues, which was to make insulin a gift to the world. It is outrageous that this is the reality, and T1International will continue to speak out until the pharmaceutical industry is held accountable.’’

T1International advocates will be speaking out and educating the community about the story of insulin and how to get involved in T1International and the global #insulin4all movement. The aim is to put an end to the reality that far too many people die or suffer grave physical, mental, and emotional health consequences due to pharmaceutical greed.

Visit the campaign page and read more at: t1international.com/100years

Questions about T1International and this campaign should be directed to press@t1international.com.

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.

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.

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.

All I Want for Christmas is…Affordable Insulin

So…remember when I said I didn’t have time to rewrite a classic Christmas carol this year? (Please refer to last week’s post.)

Well, that was before inspiration struck.

Regular readers of this blog know that the cost of insulin has been on my mind a lot this year…so when I was thinking about that and a certain Mariah Carey song came on, I knew what had to be done.

Without further ado, please enjoy my rendition of Mariah Carey’s “All I Want for Christmas is You”…with the words changed with insulin affordability in mind. Do read/sing along to this – break out your best diva voice!

I think Nick Jonas should volunteer to sing my new version of this song…

I don’t want a lot for Christmas
There is just one thing I need
I don’t care about the presents
Underneath the Christmas tree
I just want insulin costs to go down
More than you could ever know
People with T1D deserve this win,
All I want for Christmas is affordable insulin

I don’t want a lot for Christmas
There is just one thing I need (and all PWD)
Don’t care about the presents
Underneath the Christmas tree
We don’t need to pay so much
To evil big Pharma (I)
Eli Lilly won’t make me happy
With generic insulin on Christmas day

I just want insulin costs to go down (ooh)
More than you could ever know (ooh)
People with T1D deserve this win,
All I want for Christmas is affordable insulin (yeah, baby)

I won’t ask for much this Christmas
I won’t even wish for diabetes to go (and I)
I just don’t wanna keep on waiting
For those prices to go low

I won’t make a complaint and send it
To Amazon for their new insulin – (it’s lame)
I won’t even roll my eyes
When I file another insurance claim

‘Cause I just want insulin costs right (ooh)
I’m tired of putting up this fight (ooh)
What more can I do
Oh, Baby all I want for Christmas is affordable insulin (ooh, baby)

All the pods are pumping
So much insulin everywhere
And the sounds of disgust over
Insulin prices fill the air (oh)

And everyone is surmising (oh, yeah)
Why are those prices rising?
Santa won’t you bring me (yeah)
What I really need (oh)
Won’t you please make insulin affordable quickly

I don’t want a lot for Christmas
This is all I’m asking for (I)
I just want big Pharma to
Listen to us all, for sure

I just want insulin for all (ooh)
More than you could ever know (ooh)
Help PWD win
Baby, all we want for Christmas is affordable insulin (yeah, baby)

All I want for Christmas is affordable insulin, baby
All I want for Christmas is affordable insulin, baby
All I want for Christmas is affordable insulin, baby
All I want for Christmas is affordable insulin, baby
All I want for Christmas is affordable insulin, baby

A T1D Christmas Craft

I love Christmas, crafting, and some might argue that I love T1D (that’s mostly false, but when you’ve got a chronic illness, you’ve got to learn how to love some aspects of it…otherwise, you’ll be miserable).

So I recently *attempted* to combine all three of these things and do a little DIY project with an empty insulin vial.

And I learned a few things along the way…

  1. I do not recommend messing with a glass vial without safety glasses, gloves, and a trash can nearby. I was lucky enough to avoid any major glass breakage, but some did happen, and I could totally see this craft getting wicked messy and potentially ouchie without taking the proper precautions.
  2. Insulin vials are stable AF…they are not meant to be tampered with.
  3. Glitter cannot be directly injected into an insulin vial. Period, bottom line, don’t even try it.

Okay, so now that I’ve got my disclaimers/lessons learned out of the way, let me tell you why I decided to fill an empty insulin vial with gold glitter.

For years, I’ve seen DIY projects floating around online involving old diabetes supplies. They range in the level commitment and skill involved, but there’s no questioning the creativity of our community when it comes to recycling supplies we’d normally throw away after using.

One project that I’ve seen over and over again is transforming an empty insulin vial into a Christmas ornament: Simply stick an ornament hook into the insulin vial’s rubber top, hang it on a Christmas tree branch, and bask in its beauty. I decided to take this concept to the next level by putting gold glitter into the vial because insulin is often referred to as “liquid gold” within the diabetes online community. What better way to represent that than to make it appear as though the contents of a vial were truly liquid gold?

In order to do this, I set aside a vial once I was finished with it/sucked every last drop of insulin out of it. Then, I made a sad attempt at combining glitter with water and using an old syringe to transfer it to the vial (needless to say, I had no luck). So I came up with a new strategy: Pierce the rubber stopper and try to funnel glitter in…and that didn’t work. It became evident that I’d have to remove the top entirely, so using my nifty new toolkit that my father just purchased for me (thanks, dad), I set about the task. I used a razor to carve the rubber stopper up and out, and then pliers to get the metal maroon covering off completely. I broke off a small piece of glass in the process – whoops – but using those tools did the trick for me…all I did after that was take the cap from a new vial of insulin and glued it to the top of the glitter vial to ensure most of its sparkly contents would remain inside.

And voila, here’s the end result:

Despite the glass breaking off, this DIY came out better than I expected.

As I held the glittery vial in front of my Christmas tree for a few photos (if I didn’t take pictures, then it didn’t happen), it occurred to me that there’s a strong likelihood that many families will have to make a difficult choice this holiday season: Give a special gift to a loved one, or use that money to pay for insulin instead. Or even more seriously, to have to choose between making this month’s mortgage/utilities payments, or getting life-saving medication.

The thought shook me, as nobody should have to make a choice like that ever.

And so I thought of something to add to my Christmas wishlist: affordable insulin for all.

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!

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.