How I Did My Part to Help Prioritize All Types of Diabetes as it Pertains to COVID-19 Vaccination Rollout in My State

Across social media, I keep seeing the same type of photo pop in my feeds that sparks jealousy, triumph, fear, confusion, and hope all at once: the COVID-19 vaccine selfie, fondly referred to as the “vaxxie”.

I’m beyond happy that dozens of family members and friends have received the vaccine. It makes me feel good to know that they’re doing their part to help protect themselves and others, and it’s wonderful to know that the vaccine is being distributed to some extent.

However, I take issue with part of the distribution plan in my state.

Using my voice to hopefully change/improve the rollout of the vaccine in MA felt good.

In Massachusetts, COVID-19 vaccine rollout has been chaotic, to put it mildly.

It’s probably similar in many states, but the part that I find most frustrating is the fact that people with type 1 diabetes (and seemingly no other co-morbidity) are being lumped together with the last group of individuals to be vaccinated.

My endocrinologist confirmed this for me the other day during my virtual appointment: “Why is it [presumably her computer system] showing you in phase 3? You should be in phase 2…” I nodded vigorously and we talked for a few minutes about how disconcerting the whole vaccine rollout plan is. I explained to her that the Massachusetts chapter of #insulin4all was coming up with language to email to local representatives to implore them to do everything possible to prioritize vaccination for all people with diabetes, and a couple days later, I got my chance to do just that.

I looked up my local and state representatives with a quick Google search and emailed three individuals who are in positions to revise public guidance regarding COVID vaccinations. As soon as I hit “send”, I felt this amazing sense of empowerment – it felt good to do something about an issue that I’m very passionate about.

While I wish that I could do more to ensure change, I do feel a sense of pride that I tried to do something by using my voice. It represented the first (but certainly not the last) time that I plan on contacting legislators to help improve diabetes care, management, and accessibility of supplies – not just for myself, but for all people living with diabetes.

What I Learned About Legislation and Action for the MA Chapter of #insulin4all

Last month, I wrote about how I decided to join my state’s chapter of #insulin4all because I’ve been upset about the high costs of insulin for awhile now, and I want to do anything I can to help make it more affordable…not just in Massachusetts but all across the U.S., and even in the world.

Our first meeting was introductory, but the second one focused on legislative action.

Truth be told, I wasn’t exactly stoked on this topic because, well, I don’t find law-making particularly interesting. I always imagine a bunch of stuffy middle-aged white men sitting in a room and arguing about section X of law Y and I’m sorry, but…yawn.

However, I was surprised by how much I took away from this meeting that recapped the current state of legislation and action for the MA chapter of #insulin4all. Here are my big takeaways:

  • There’s a lot that one person can do in order to help make legislative change. It goes beyond contacting local legislators – an individual who offers their time, resources, and voice can do so much by learning the legislative process, attending hearing or floor sessions, testifying, and acting as a resource to legislators. As a person with diabetes, I have stories and knowledge to share that can help legislators really understand what a person with diabetes experiences and needs…and that in itself is a powerful tool.
Access to insulin is a human right that, unfortunately, we have to fight for.
  • Attempts at change have been made…and tabled. One piece of legislation we talked about extensively during this meeting is Kevin’s Law, which is named for Kevin “Howdy” Houdeshell. He passed away in 2014 from rationing insulin, after he was unable to refill his prescription for insulin due to his prescription being expired and the unavailability of his doctor due to the New Year’s holiday. This law would allow for pharmacists to dispense a chronic maintenance drug such as insulin to a patient without a current prescription in limited circumstances. In Massachusetts, the bill was reported favorably by the senate committee last March, but tabled in July due to a variety of factors. On the bright side, a meeting has been scheduled with a recently elected representative who could help revitalize discussions of the bill, so we can be hopeful that change will be made.
  • Public production of insulin is one way to make it more affordable. So this is pretty neat: California is the first state to establish public production of “biosimilars” that include insulin. This article that I’m linking to explains it best, but basically, this just means that the state of California is getting into the generic drug business to prevent price gouging and fight back against big pharma. But what’s really cool and exciting to me is that Massachusetts may be just as capable (in other words, have just as much market power as California) to produce generic insulin, too. MassBiologics is a non-profit, FDA-licensed manufacturer of vaccines that could also potentially produce insulin. Though I did a quick search and couldn’t find much on the matter, it’s a fascinating concept that could make insulin much more affordable in Massachusetts.

And those are just a few of the key points we covered in the meeting. I left the Zoom session feeling so much more informed as to how legislation works in the state of Massachusetts, and the steps that I can take to make changes not just as an individual, but as someone working with a motivated and knowledgeable group like the MA chapter of #insulin4all.

Why I Decided to Join My State’s #insulin4all Chapter

On Saturday, December 5th, I attended my very first T1International #insulin4all meeting for the Massachusetts state chapter (virtually, of course).

What motivated me to join this meeting?

There’s a couple of factors…for starters, I’ve been a digital advocate for T1International for just over six months now. In that time, I’ve become familiar with their mission to not just promote diabetes awareness, but to empower individuals to share their stories and experiences with diabetes and fight for change to make insulin affordable for all.

I’ve spent the last few months reposting and sharing infographics and blog posts from T1International, but lately, I’ve felt the urge to do more because clearly, we’ve still got a long way to go when it comes to lowering the list price of insulin.

The problem for me, though, was that I wasn’t sure where to start, and since I work full-time, I was definitely foggy on how much of my spare time I could dedicate to a cause.

I’m excited to get involved with my state’s #insulin4all chapter.

I had a vague awareness that #insulin4all chapters existed across the country, but I didn’t know whether the one in my state was active or if joining it would be the right fit for me.

So I felt it was kismet when I saw an Instagram post from a friend I met through the College Diabetes Network (hi, Claire!) announcing that she was going to take over leadership of the Massachusetts #insulin4all chapter. Through her post and a couple of messages back and forth, I learned that the chapter had been stagnant for awhile and it was Claire’s goal to assemble a group to revitalize it and start making real progress in our state.

Our first meeting went incredibly well: A handful of people showed up and we got to know each other as well as the rough roadmap that would direct our next several meetings over the coming months. What really struck me is that everyone who attended obviously had diabetes in common, but on top of that, we all shared a frustration with the current cost of insulin, even though we haven’t directly felt the impact of it like other members of our community have. It seemed that each person felt motivated to work together to do what we can in our state, and to me, that was a sign that I was going to be glad that I joined the group.

What’s next for the Massachusetts #insulin4all chapter? I’ll be sure to share it as we develop goals and set out to achieve them!

Where I’m From and What my Diabetes Community is Like There

It’s November 18th which means that it’s Day 18 of the Happy Diabetic Challenge! The prompt for today was fairly simple – state where you’re from – so I decided to delve a little deeper and explain what my diabetes community is like at home…

Home is where the heart is, and it just so happens that I’ve got quite a diabetes community there, too.

I spend most of my time in Virginia these days, but I’m originally from Massachusetts. Growing up in that state shaped me as the human being that I am today, and it’s also where I had a total change in perspective when it comes to diabetes, community, and support.

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A map of Massachusetts, with a few diabetes accessories sprinkled in there.

I’ve said it many times here, but throughout my youth, I had my mom and my aunt as my type 1 influences in my life – that was it, and that was all that I needed and wanted.

Or so I thought.

When my feelings on diabetes support changed in college, I quickly discovered the value in fostering a sense of community wherever I go. So I made it a mission upon graduating to make sure that I maintained diabetes connections at home. It felt especially important as I was about to undergo another major life transition: joining the workforce full-time.

And I’m glad I fulfilled that goal. Through the power of social media, I attended a handful of diabetes meetups in the last few years that provided that sense of belonging that I yearned for and introduced me to many local T1Ds.

So as you may be able to imagine, it’s been tough for me to still receive invites to events and gatherings that I can no longer readily attend since I’m in a different state most of the time.

This is why I finally decided to do something about it. Feeling inspired by the spirit of National Diabetes Awareness Month, I found a group that meets up semi-regularly in my new location. I was nervous about it, but I made an introductory post on their page. I explained that I work from home; as such, it’s hard meet new people. And not only would I like to connect with other T1Ds, but I’m also interested in volunteering in the area.

My “bold” move paid off. Within hours, several people had commented on my post and made it known that I could reach out to them whenever to arrange a lunch or explore the city. I haven’t taken anyone up on it yet (with the Thanksgiving holiday being so close and all), but it’s really nice to know that the offers are there when I’m ready to take them up on it.

Even though the concept of “home” has been a little shaky in the last year, I know this much: Wherever I wind up, I’ll find and nurture a diabetes community there because people who just get it make even the strangest of places feel a whole lot more welcoming…and like home.

How Moving to a New State Impacted my Diabetes

A few short days ago, I made the move from Massachusetts to Virginia…and just as I predicted, the whole process has been emotionally draining. I’ve cried more times than I can count. I’ve busted my butt trying to get settled as quickly as possible. I’ve been eating poorly as a way to cope with my emotions. And my blood sugars have been all over the place as a result…again, just as I predicted, but still a bit disheartening.

I knew to expect some diabetes turbulence from the get-go. After all, a seven-hour car ride doesn’t exactly bode well for anyone’s blood sugar. But surprisingly, the drive to Virginia was probably when my blood sugar was most stable. I was snacking a little (okay, a lot) on the drive because it gave me something to do other than cry and talk unintelligibly to my boyfriend (my trusty driver) and it was far from healthy snacks…think fast food breakfast sandwich, Reese’s cups, and trail mix. Could’ve been worse, could’ve been a whole lot better. I think that because I was well aware of the high carb content of my snacks of choice, it motivated me to stay on top of my blood sugars and give myself micro-boluses as needed.

So that was all well and good.

Then came the actually moving-in process.

You are a rare gem.

Box after box and bag after bag were transported from the car, up three flights of stairs, and down a long hallway. It’s no wonder that I went a little low from all that back-and-forth, though I did think that riding the elevator as needed would’ve prevented too much of a drop. And if I could go back in time, I’d like to address the day that I took off from work to do the bulk of my unpacking and adjust my temporary basal settings to something like a 50% decrease for six hours or so. That’s because as I sorted through clothing, emptied boxes, and organized all of my possessions, my blood sugar just did not want to stay put at a comfortable level. Over the course of the very long day that I spent unpacking, my blood sugar dropped low enough that I had to stop what I was doing to eat three times. It felt like I was constantly stuffing my face with food, which was frustrating and the last thing I wanted when all I desired was to get settled.

That’s the physical component of moving – a lot of labor; more specifically, lifting, tidying, hanging, folding, unfolding, and if you’re me, cursing.

But there’s an emotional side to it, too, that I would guess affected my blood sugar just as much as the physical aspect did.

I’ll be honest: Tears were shed. Anxiety felt like it would swallow me whole at points. Doubts ran through my mind as I wondered whether I was strong enough to be so far away from family and friends. I was feeling – and am still feeling, TBH – so many different emotional swings that I am fairly certain that I can blame my blood sugar swings on them.

I’ve said it before and I’ll say it again: I know I need to give myself time to adjust. I’ve got to take it day by day, hour by hour, moment by moment. I need to let myself feel the way that I feel and remember to be kind to myself, especially where diabetes is concerned.

It just helps to write it all down.

My Thoughts on Moving from MA to VA

In the last few weeks, I’ve told most people in my life that I will be moving to Virginia (from Massachusetts) at the end of March. I have a lot of feelings about making the move: anxiety, excitement, anticipation, fear, optimism, and curiosity are chief among them.

And naturally, one of my top concerns is how my diabetes will adjust to my move. I imagine that the first week or so will be the most challenging. Between moving boxes and setting things up inside, I’ll be doing quite a bit of strenuous physical activity. It’s not that I’m not used to it (I exercise pretty much every day), or that I’ll have to do it alone (my boyfriend, who I’m moving in with, is going to help). It’s more so that I’m worried about the emotions I’ll be experiencing as I go through the moving-in process…and how those emotions will manifest themselves in my blood sugars. The “what ifs” keep running through my mind. What if I have trouble getting my prescriptions? What if I can’t find the right health-care team for me in Virginia? What if my diabetes struggles with the change? What if, what if, what if?

Succulent Sundays
Moving is an emotional process that can affect more than just mental health.

Don’t get me wrong – I really am excited to make this move. I’ve lived in the same small town my entire life, and though my love for it and the people who live there will never waver, it’s time to see what else is out there. And it’s really time to stop sustaining a long-distance relationship with my boyfriend. The last four years have been exhausting as we’ve traveled back and forth to visit each other for fleeting periods of time.

But I do know myself, and I remember quite clearly how I handled going off to college for the first time. I cried. For like, three days straight. I also marveled at the dining halls and the endless options available to me. Translation? I let my emotions drive my food choices and, in turn, my blood sugars suffered. But then…I started getting into a routine. I ate meals more regularly. I started exercising. I kept my mind occupied. And I started meeting new people and forming friendships that I cherish to this day. I grew from a naive teenager into a young adult with her shit *somewhat* together who started to accept a lot more responsibility in life. I finally became accountable for my diabetes in a way that I never was before, and even though it scared me initially, I recognize that it was ultimately exactly what I needed to do.

So I’m seeing the parallels here between my transition to college and my current transition with this move. I know that I’ll cry and be scared and miss my family and friends, but I also know that it’ll get easier as I establish my rhythm. The same can be said about my diabetes – it may protest in the beginning and be turbulent and unpredictable, but I’ll tame the savage beast…because I always find a way to.

Here’s to a new chapter in my life, one marked by more independence, self-growth, and positive change. And my goodness, here’s to frequent flier miles and the fact that home will always be one short plane ride away. Massachusetts can’t get rid of me that easily.