Have You Signed the Type 1 Diabetes Access Charter?

On Wednesday afternoon, I signed a charter intended to bolster worldwide diabetes advocacy. The charter was launched by T1International and I’m sharing it here with you to encourage you to sign it, too. Here’s some more information on it, pulled directly from the T1International website:

Around the globe today, people with type 1 diabetes are dying because they cannot afford or get ahold of insulin, supplies, education and treatment.

To survive and live a full life, everyone with type 1 diabetes has the right to the following:

1. The right to insulin
Everyone should have enough affordable insulin and syringes.

2. The right to manage your blood sugar
Everyone should be able to test their blood sugar levels regularly.

3. The right to diabetes education
Everyone should be able to understand their condition, including adjusting insulin dosages and diet.

4. The right to healthcare
Everyone should have hospital care in the case of emergencies and ongoing specialist care from a professional who understands type 1 diabetes.

5. The right to live a life free from discrimination
No one should be subject to any form of discrimination or prejudice because they have type 1 diabetes.

In addition to magnifying diabetes advocacy efforts globally, the charter is also used to influence the actions of governments and organizations so that policies can be changed and the rights of people with type 1 diabetes can be prioritized.

It took me fewer than 30 seconds to sign the charter, and I put this blog post together in under 10 minutes. Join me by signing and spreading the word about it to help people living with type 1 diabetes have access to vital insulin, supplies, healthcare, education, and freedom that are necessary in order to survive and live full lives.

Do You Know How Shareholders Benefit from Insulin Price Increases?

This post was originally published on the T1International website on May 6, 2020, and was written by Rosie Collington. I am sharing it on Hugging the Cactus because to be quite frank, I never understood the many issues surrounding insulin price increases. After reading this post, I had an “aha!” moment as I finally began to understand how the profits from insulin price increases are distributed. It’s an important issue to understand: with increased awareness comes an increased drive to make change.

Patients living with type 1 diabetes have known for years that the list price of insulin in the United States has soared. They’ve paid the price – in insurance premiums, in upfront costs, and also, tragically, in some cases with their health.

But until recently, it has been difficult to prove just how much the list price of insulin has increased, and what proportion of the higher costs for patients have gone to the three main insulin manufacturers – Eli Lilly, Novo Nordisk, and Sanofi – versus other companies in the US prescription drugs supply chain, like insurance companies, pharmacies, and pharmacy benefits managers. Information about pricing negotiations is considered a trade secret, meaning that the actual data is difficult to access. Instead, researchers and patient groups have had to more or less rely on guesswork to estimate the value of price increases, or the highly selective data published by the companies themselves, which do not paint the full picture.

The lobby group representing pharmaceutical companies in the United States, PhRMA, has suggested that pharmacy benefits managers (PBMs) have been the primary beneficiaries of the sharp list price increases of many prescription medicines in recent years. The American Diabetes Association’s Insulin Access and Affordability Working Group similarly reproduced selective data released by the three insulin manufacturers on the differences between the list and net prices – the amount the manufacturer receives – of a few insulin medicines, suggesting that the additional profits accrued by the manufacturers was low relative to intermediaries like PBMs.

 

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But in March of this year, researchers at the University of Pittsburgh provided evidence that the net price of insulin medicines in the United States had also soared – by 51% between 2008-2017. This indicates that while other intermediaries had benefited from list price increases, the manufacturers had too. This may seem obvious, but having data to prove it is important.

For my research with Bill Lazonick, funded by the Institute for New Economic Thinking, it has been key to mapping how the profits from higher insulin sales revenues have been distributed. We wanted to find out whether insulin list price increases in the United States had contributed to higher research and development (R&D) investment by the companies, as they so often claim is the case. What we discovered was that as the list price of insulin has increased in the past decade, the ratio of spending on R&D relative to what the companies distributed to shareholders had actually decreased. While over the period of 10 years, the companies spent $131 billion directly on R&D, crucially we found that during the same period, the companies had distributed $122 billion to shareholders in the form of cash dividends and share buybacks.

Cash dividends are the means used by all publicly listed companies to distribute money to shareholders as a reward for holding shares. Share buybacks work quite differently – companies can buy their own shares from the market, which inflates the value of existing shares on the market. Share repurchasing can also benefit company ‘insiders’, like executives, who often receive pay in shares, because they can decide to time when they sell their shares to get the most value. This is not technically illegal, though it was once upon a time. In the last year, some lawmakers in the United States, including Bernie Sanders and Elizabeth Warren, have called for stock buybacks to be banned.

Fundamentally, the system should not have permitted shareholders to profit in this way as diabetes patients were struggling to access their life-saving prescription medicine. As coronavirus continues to spread around the world, the pharmaceutical industry is facing more scrutiny than ever before of its financing and drug development processes. By understanding how value is extracted by shareholders in the pharmaceutical industry, and what relationship this has to patient access, we can, hopefully, create a better system.

27 Acts of Kindness: Days 24 and 25

It is officially the month of May! Say what?!

This means that I’m rapidly approaching the last few days of my acts of kindness challenge…though I certainly do have some ideas on how to keep the positive vibes going in the near future.

Speaking of, I think that Wednesday’s act of kindness will definitely help me make that happen…

Wednesday, 4/29 – Act of Kindness #24: So this one’s really special to me. For months now, I’ve expressed to many people how I want to become a better diabetes advocate. Sure, I have this blog and it’s one form of raising diabetes awareness, but I want to do more. I started looking into some options on Wednesday and it brought me to the T1International website. I’ve had a vague awareness of T1International and their work for some time now – that website is where I purchased my awesome #Insulin4All sweatshirt – but I wanted to understand what they do to a greater extent.

Turns out, they have a pretty awesome mission: T1International works to support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all.

After clicking around their website some more, I found out that they are seeking digital advocates who can help spread the word about their organization and its goals…so I decided to sign up to become a digital advocate for T1International and I couldn’t be more thrilled about it.

I’m learning more about what I will specifically be doing this weekend, but as for now, I’m just excited about the chance to advocate for a cause that I’m very passionate about, which is access to insulin for all. Because like it says on the T1International website, life with diabetes is complicated enough…nobody should have to worry about access to vital insulin, diabetes supplies, or medical care on top of it.

Travel Buddies
Water and insulin are two very important liquids that not all people have access to…and that’s not okay.

Thursday, 4/30 – Act of Kindness #25: You know what else everyone should have access to, but unfortunately, many people in the world do not? Clean water.

Access to clean drinking water is absolutely something that I take for granted…and it’s simply unfathomable to me that 785 million people – which is to say, 1 in 9 – lack access to safe water. How wild is that? Water is crucial to so many aspects of life, and there isn’t one single human on this planet that can survive without it.

So after a conversation with my mom yesterday about causes that are near and dear to our hearts, in which she reminded me that for years now she’s been hoping to build a water well in a place that it’s greatly needed, I donated to water.org. Talking with my mom and hearing the dedication in her voice made me want to do what I could to help her support a cause that means a lot to her, so I happily made the donation in her name and even got to send her an eCard notifying her of it. Hopefully, it makes her smile and reminds her that she does have the ability to get that well built one day because those closest to her will support her every step of the way.

Whether it’s insulin, water, food, shelter…there are simple basic needs that all human beings deserve to have access to, and its an injustice that they don’t. Fortunately, there are amazing organizations out there like T1International and Water.org that work tirelessly to change this, and it’s humbling to be able to support them in any capacity. I linked to their websites in this post – hover over their names above – I encourage you to check them out and consider the ways you might be able to help them, too.

 

A Problematic Post

I am not the kind of person who scrolls through social media looking for posts that will make me angry. And I’m certainly not the kind of person who likes the idea of calling someone out on their perceived wrongs via social media (or any other medium) because I think that it’s usually not constructive.

But I am the kind of person who thinks that word choice matters. So when I saw Autumn Calabrese, a celebrity fitness and nutrition expert, post the following text on Instagram, I got pretty upset. (Click photos to see them more clearly).

I’m not going to lie, I was pretty upset by this post. I’ve followed Autumn on Instagram for almost two and a half years now, ever since I subscribed to the popular Beachbody workout app. I really like her 21 Day Fix workout program because it kicks my butt every time in just 30 minutes. She comes across as a fun person who is really passionate about her job and enjoys the opportunity to help others, which is why I decided to follow her Instagram profile. Normally, I enjoy her posts because they’re filled with motivating fitness and eating tips that promote a healthier lifestyle. She definitely knows what she’s talking about when it comes to exercise and eating properly.

But after seeing this post, I think that Autumn – and people like her who are not educated in the minutiae chronic conditions like diabetes – needs to step off her soapbox.

She is using her post to say that diabetes – mind you, just generic “diabetes”, there’s no mention of any of the many types – is a lifestyle killer. She says that “the worst part about it is that you are 100% in control of if it happens to you.”

OMG. No, no, NO.

Forget that she was using the current coronavirus outbreak to promote her healthy eating plan (which in itself is a pretty weird way to advertise something) – she came after the diabetes community with this post. Now, I’ll never know what her true intent was, and I don’t care if Autumn was talking about a specific type of diabetes here. That doesn’t make a damn difference. The problem with this post is that she is perpetuating diabetes stigma and alluding to a myth that an individual has control over whether or not they get diabetes. Posts like this are the reason why there is so much confusion and misunderstanding when it comes to all types of diabetes, and I think she should be ashamed of herself for putting this on her profile.

It’s even more upsetting that she immediately got defensive when people started writing comments under her post, trying to inform and educate her. I was one of those people, and I think that I kindly and respectfully directed her to learn more by visiting beyondtype1.org so she could be better informed on all types of diabetes and maybe find out why what she wrote was harmful. Sadly, I never got a response, and her post remains on her profile, unchanged.

You can lead a horse to water, but you can’t make it drink. You can also unfollow a person on social media and write a blog post to get your feelings out there, so that’s just what I’ll do here.

 

My Take on Diabetes and Support

It’s November 20th which means that it’s Day 20 of the Happy Diabetic Challenge! Today’s prompt is “biggest supporter”. Since it’s impossible for me to identify a single person as the biggest source of support with my diabetes, I decided to write about how my thoughts on diabetes and support have changed over the years.

Emotional support is a lovely thing. It feels good to have people in your life who you feel have your back. And it’s twice as nice to have when you’re dealing with a chronic illness like diabetes.

I talk extensively about diabetes and support in the most recent episode of the podcast, Ask Me About My Type 1. (Here’s the link in case you haven’t listened to it yet.) Rather than rehash everything I said in that episode, I’m going to use this post as an opportunity to reflect how my wants and needs in terms of support for my diabetes have changed over the years.

It’s interesting (at least, it is to me) to think about how and why my desire for support has changed as I’ve grown older. My childhood was very normal despite diabetes. It was always there and it was always a thing I had to deal with, but I definitely didn’t feel compelled to talk about it as much as I do now, let alone lean on others in difficult times. Why is that?

I think it has a lot to do with getting to know myself better as I’ve aged.

HUGGING THE CACTUS - A T1D BLOG
In this post, I get all self-reflective-y on diabetes and support.

After all, they say that with age comes wisdom. And though I don’t exactly consider myself a wise old sage or anything of the sort, I do think that I’ve acquired some enlightenment about myself and the way that I process things in my adulthood.

Specifically, I realized in the last few years that diabetes has instilled in me a strong desire to feel in control of every aspect of my life…not just diabetes. When something doesn’t go according to whatever carefully thought-out plan I’ve cooked up, I get upset. And I tend to either bottle up my dismay, which is never a good thing to do, or I totally take it out on the whichever poor soul happens to be within my vicinity, which isn’t fair. Neither of those reactions is a healthy method of dealing with things, but at least I’m aware of that and I’m actively trying to improve how I cope.

I think that this example shows how important diabetes support has become to me because I’m able to lean on others in those times that all of my diabetes plans don’t work out the way I envisioned them. I’ve figured out, over time, that it’s just about the only thing that really works for me. Talking to other people with diabetes (and without diabetes) about struggles that I’ve faced makes me feel less alone. It used to be scary for me to be so vulnerable with others, but I’ve found that it’s worth it because it helps me heal, move on, and forgive/accept myself for feeling whatever I’m feeling.

Support from others is truly powerful…but above that, learning to rely on others – learning how to best support myself, really – is more than that. It’s magical and absolutely enhances the quality of my life with diabetes.

Beyond Diabetes

This November, I participated in the #HappyDiabeticChallenge on Instagram. This challenge centered around daily prompts to respond to via an Instagram post or story. I’ve decided to spread the challenge to my blog for the last couple days of National Diabetes Awareness Month. As a result, today’s post topic is beyond diabetes.

I can’t believe that today is the final day of November, A.K.A. National Diabetes Awareness Month. In a way, I’m relieved. After all, diabetes advocacy can be exhausting. I’ve kept up daily Instagram posts, in one way or another, in response to the #HappyDiabeticChallenge. I’ve tried to keep all of my blog posts this month on theme. I even participated in a fundraising live stream on YouTube, which was an anxiety-provoking yet exhilarating event all on its own.

Needless to say, I’m looking forward to dialing it back down, temporarily, for the month of December. I won’t stop advocating, but I will take a small step back from it so I can recover and process everything from the month in my own time.

It’ll be a good way of reminding myself that I’m more. More than just this stupid chronic disease. There’s so much more to me than diabetes: I’m a daughter, a sister, a girlfriend, a best friend. I’m a dog lover (despite being allergic to most of them). I’m a young professional. I’m a millennial (who proudly owns the moniker). I’m a Disney fanatic and Harry Potter obsessive. I’m a creative and passionate person who cares about a lot of different people, things, and projects.

Capture
I am more than my diabetes.

I’m beyond my diabetes. I prove that to myself each day by living my life unencumbered by it. When it knocks me down, I always get back up to remind it that I’m the boss.

Beyond National Diabetes Awareness Month is a broader realization that I’m a bit burnt out by this hardcore advocacy. And that’s okay. I’ll take a breather and remember to enjoy life more, because I know that I’m beyond diabetes.

Advocacy is not “One Size Fits All”

Not too long ago, someone told me that my blog wasn’t really a form of diabetes advocacy, a point that I strongly refuted.

Advocacy looks different to everyone, and people can be advocates in countless ways. I think it depends largely on 1) what someone is trying to advocate and 2) their personality. For instance, maybe someone is really good at fundraising and wants to raise money to donate to a particular charity. Perhaps someone thrives from advocating at the group level, whereas another person prefers to do it individually. Maybe political advocacy for a cause like diabetes is right up one person’s alley, and another person is more comfortable with using social media to raise awareness and interact with others in an environment like the diabetes online community.

IMG_5153
My blog is my diabetes advocacy outlet.

If you haven’t guessed it by now, my preferred way to partake in diabetes advocacy is blogging. I feel that writing down my story, whether it’s lessons I’ve learned over the years or mundane anecdotes about life with diabetes, is the form of advocacy that makes the most sense for me. It allows me to open up to a large, eclectic audience (i.e., the entire Internet) and show them what it’s like, to some degree, to live with diabetes. I keep things real in my posts and write about the good, the bad, and the ugly when it comes to T1D, and to me, that is advocacy.

Bike Beyond, the Documentary: An Emotional Cinematic Experience

Last summer, a team of 20 international riders embarked on the journey of a lifetime. They spent 10 weeks cycling from New York City to San Francisco – east coast to west coast. As if this feat weren’t incredible enough, this team was comprised of individuals with type 1 diabetes.

This ride was risky enough, but throw diabetes into the mix, and it seemed impossible. Blood sugars would be a constant concern. Diabetes technology could fail. Careful watch of blood sugars could clash with the focus on cycling. Diabetes burnout could affect the riders physically and mentally.

But – spoiler alert – neither fear nor diabetes would prevent these riders from completing their arduous trip.

When Team Bike Beyond officially started their trek last summer, I remember following along as best as I could through various social media channels. I felt connected to the team: not just because of diabetes, but because I personally befriended a couple of the riders a few years ago at one of the College Diabetes Network’s Annual Student Retreats. I attended as a volunteer, and Jesse and Meagan were there as students. It’s funny how quickly friendships can form over the course of five days, but as anyone who’s gone to one of these retreats can tell you, there’s something about being immersed for a few days with a group of people who just get it. So it’s natural that we bonded over our mutually dysfunctional pancreases.

Anyways, as neat as it was to read those updates from Jesse, Meagan, and the team, there’s no way that words could capture what they were actually experiencing out on the road. I think that’s why watching the documentary was so emotionally captivating to me: Within the first few minutes, tears were rolling down my cheeks as the bikers explained the nervous energy they felt in the days leading up to the ride kickoff. In fact, my facial expressions changed so frequently throughout the film that I’m sure it was comical. One moment I’d be beaming, and in the next my jaw would drop open. I’d laugh when the riders were being goofy together on camera, and marvel with them as they took in stunning scenery across the country.

Overall, the documentary was incredibly well done. Victor Garber’s narration was fantastic – smooth and clear without taking attention away from what was happening onscreen – and the visuals were beautiful. I liked how footage from the riders’ GoPro cameras was incorporated so viewers could get an accurate representation of their perspectives from the bikes. It made me appreciate the physical intensity of the ride that much more, because diabetes aside, cycling such a long distance filled with rocky roads and steep inclines is extremely demanding on the body.

My recommendation? Check out the trailer. I included it above. I guarantee it’ll pique your interest and stir your emotions. You’ll want to watch the full documentary, which you can get here. After watching it, I think you’d agree with me that Team Bike Beyond crushed their goals of raising T1D awareness and eliminating stereotypes by completing this journey.

Memory Monday: That Time I Created a Diabetes Lesson Plan for Middle School Students (Part 2)

One Monday per month, I’ll take a trip down memory lane and reflect on how much diabetes technology, education, and stigma has changed over the years. Remember when…

This is a continuation of last month’s Memory Monday, in which I reflected on what it was like to work on a diabetes-oriented community action project when I was a freshman in high school. There were two main components to my project: running a School Walk for Diabetes, and educating a group of middle school students on type one diabetes.

Ugh, the thought of presenting to a group of middle school kids horrifies me now, but I guess I wasn’t so afraid at the time – you know, because I was a cooler, older, more sophisticated 14 year old lecturing the immature 12-year-old children.

*I’ll pause to allow you a moment (or several) to laugh at that mildly ludicrous notion.*

The easiest part of prepping to talk to the students was devising a lesson plan. My project partner and I put together a beautiful slideshow (complete with Comic Sans font, how professional) that we would use in the first half of the presentation. During the second half, I would show the students all of my medical equipment and demonstrate things like priming an insulin pen and testing my blood sugar. We also provided students with examples of healthy snacks for a person with diabetes and when to eat them. The formal presentation would end with us giving students the chance to ask questions.

Sounds pretty neatly put together for just a couple of freshmen, right?

Turns out, it really did go over well with the students! There were a couple technical difficulties (blast those LCD projectors), but my partner and I knew our presentation like the back of our hands, so nothing deterred us from accomplishing the goal of our lesson plan: for the students to have a greater knowledge of diabetes.

We felt like our hard work was worth it when we received completed evaluation cards from the students. We’d asked them to tell us: 1) The best part of our lesson, 2) The worst part, 3) Rate it on a scale of 1-5 (1 being worst; 5 best), and 4) Write one fact about diabetes they learned. Our average rating wound up being 4.2, which made us feel like rock stars! All these years later, I still have some of the best comment cards preserved in a binder about my project:

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Personally, I really love how one student thought that diabetes is spelled “diabedes”. And I’m amused by how another student didn’t seem overly crazy about the PowerPoint (it must’ve been that damn Comic Sans font that ruined it).

But joking aside, this whole project still resonates with me ten years later because I think it marked the beginning of my passion for diabetes advocacy. It was one of the first times that I willingly shared my diabetes with others and let a real conversation take place about it with no holds barred.