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.

3 Moments When Diabetes Surprised Me

Despite the best of efforts to “control” all aspects of life with diabetes, the bottom line is that it can still be totally unpredictable from time to time.

Usually, these unexpected diabetes experiences aren’t exactly welcome…but sometimes, diabetes surprises me in wonderfully delightful ways.

Have you ever been pleasantly surprised by diabetes?

Here’s three of ’em that have occurred in semi-recent memory:

1 – That time I was able to eat an entire homemade blueberry muffin WITHOUT BOLUSING FOR IT. Um, that’s crazy, right?! I had planned on eating half of said muffin in order to bring up a low blood sugar, but, well, it just tasted so damn good that before I knew it OOPS the whole thing was gone. I hemmed and hawed for a long time over whether I should bolus for the excess carb intake, and finally decided that I would just monitor my blood sugar and correct it as needed. But, weirdly enough…I saw my BG slowly rise and settle into the mid-150s and STAY there. Absolutely amazing, right? Maybe blueberry muffins are the new cinnamon cure for diabetes…

2 – When a pod change coincided with said pod running on its very last unit of insulin. Talk about using insulin to the very last drop, right? I still don’t know how I managed to pull this one off, but all I know is that I wore a pod for the maximum amount of time (80 hours) and had just one unit of insulin left inside it by the time it expired for good. I wish I could make this happen with every pod change, but then again, it is a little nerve-wracking to go down to the wire like that on a pod…

3 – That one instance when I drank one cocktail too many and my blood sugar behaved perfectly. This was a total freak incident and let me say upfront: I condone drinking with diabetes as long as it is done by individuals 21 and over in a safe, educated manner!!! Okay, now that I have that out of the way…like other grown-ass adults, sometimes I like to unwind with an adult beverage…and like OTHER grown-ass adults, once in a blue moon (please acknowledge the pun) I go a little overboard. Now, normally when I go a little too hard, I pay for it the next day with a hangover and high blood sugar, but on New Year’s Eve? When I drank Prosecco and a beer and a frozen Irish cream cocktail that was insanely good but carb-o-licious? I wound up with stellar blood sugars (and only a slightly hangover that was likely me just being overtired thanks to my puppy)…a head-scratching occurrence that was an absolute pleasant surprise.

And these are just three happy diabetes accidents that I can think of – I’ve absolutely had others over the years. Dumb luck? Total coincidences? Events that happened because I actually do kind of know what I’m doing? Whatever you want to call them, I can for sure classify these moments as the good kind of diabetes surprises.

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!

There Is No Insulin in Iran

This post was originally published on the T1International blog on October 27, 2020. I am reposting it here because this situation is completely, utterly horrifying and heartbreaking. As a community that collectively lives with the same chronic condition, we must come together and help Iranian people with diabetes be heard. It’s a grim reminder that the notion of “insulin for all” does not only mean that we must fight for affordable access to insulin, but we must also fight for access, period. And that simply isn’t how it should be.

To be honest, “there is no insulin” is the actual situation. Shortages of insulin are not something new in Iran, but recently there is no insulin at all. We were shocked by responses from our politicians who said, “The shortage is just for pens and we have plenty of internal production of insulin. People can replace it.” However, the types of insulin that are produced in Iran are NPH and R. Few consumers in Iran use NPH. About 70 percent of Iranian people with diabetes use insulin pens.

I myself could only find Novo Rapid insulin that was 10 times more expensive than what I normally pay – and what I paid about three weeks ago. The cost was not logical at all. We have heard many heartbreaking stories. For instance, there was a mother who did not feed her children with diabetes because they couldn’t find insulin.

We’ve made groups on social media and we are using hashtags to support each other with our own insulin, even if we are worried that we won’t have enough. In these days of quarantine, there are already a lot of people dying in Iran because of coronavirus. Now we worry that we will lose more because of the insulin shortage.

“I worry that the promise of insulin was meant to make us silent, but we have to keep speaking out.”

People have to search lots of pharmacies in their city. If they are lucky, they can find two or three pens (usually only short-acting ones). Recently, the only available type of long acting insulin pens are with insulin called “Basalin”. There is no international evidence and confirmation of safety (such as FDA approval) for this medicine.

In Iran, we just have access to glucose meters. There are no other advanced devices available, such as continuous glucose monitors or other sensors. But now, in addition to our insulin problems, we have to cope with the shortage of glucose test strips, too. How can we control our blood sugar levels without them?

As far as we can tell, it seems like our own government does not consider the current situation to be a serious issue. These days are suffocating for us. We are so unsure about everything and we don’t know exactly why this happened. When we seek an answer, we don’t get a proper one. Some say it is because of the economic sanctions imposed on Iran by the USA. Political issues should not affect something like that. People’s lives matter.

The government of Iran reacted to recent protests by saying they will distribute 600,000 pens of insulin, but they did not mention the type. Although some of us have found insulin, others are still searching pharmacies and can’t find any. I worry that the promise of insulin was meant to make us silent, but we have to keep speaking out. Thank you for helping us to be heard.

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.

My Pharmacy Mailed Me a Broken Vial of Insulin. Here’s How I Handled It.

As soon as I opened the package, I knew something was wrong.

The contents of said package were five vials of insulin – my regular 90-day supply. On the surface, nothing seemed wrong. They arrived in their usual styrofoam cooler that was taped shut. After removing the tape, I saw four ice packs next to the plastic packaging containing the insulin vials; again, this was all expected.

When I picked up the plastic package and used scissors to cut it open, though, a pungent odor greeted my nose.

A medicinal, harsh, familiar scent…the smell of insulin.

Upon further investigation, I discovered that one of the five cardboard boxes encasing the vials was totally damp to the touch. Gingerly, I opened it from the bottom flap, which was sticking out slightly due to the wetness. That’s when I saw the shattered insulin vial: Somehow, the bottom part of the vial had broken, spilling and wasting all of its contents.

I wish that smell-o-vision was a thing, because OMG…the smell coming from this was STRONG.

I was shocked. In all my years of diabetes, nothing like this had ever happened to me before!

I didn’t really give my next step a second thought: Immediately, I jumped on the phone with Express Scripts, which is the mail order pharmacy that I use for my insulin and some other medications. I spoke with and explained the issue to a customer service representative, who connected me with a technician that promised a replacement vial would be mailed to me at no additional cost to make up for the broken one. I asked if they needed me to send the broken one back to them, but I was reassured that it wouldn’t be necessary because I had called them so they could document the incident.

My issue was resolved, just like that, in fewer than 15 minutes. While it was annoying to have to take time out of my day to figure that out, I’m very happy that I got a replacement quickly and easily. But really, where was quality control on this one?!

Insulin is expensive, as we all know. And to see that a perfectly good vial full of it was rendered useless due to defective packaging was a major punch to the gut, indeed.

But this reminded me of the importance of being proactive whenever I suspect something is wrong with any of my diabetes supplies…when in doubt, do something about it.

An Insulin Resolution is Necessary

This post was originally published on the T1International website on June 29, 2020, and was written by Cyrine Farhat. She discusses her participation in the WHA virtual forum on Access to Insulin and how she used it as an opportunity to voice her concerns about barriers to insulin access in her country (Lebanon) and around the world.

An Insulin Resolution is Necessary for Lebanon and the World

Diabetes has been on the global agenda in some form ever since World Diabetes Day was created in 1991,which is also the year I was born. It took 15 years to put diabetes on the United Nations agenda after that, to tackle the urgent need to pursue multilateral efforts to promote and improve human health, and provide access to treatment and health-care education. Fast forward another nine years to 2015 when the 2030 agenda was launched and the Sustainable Development Goals (SDGs) were adopted. Despite all of that, we are now in 2020, talking about access to insulin when we should have already made it widely available and affordable to all pillars of society.

Sadly, my country and many others are still facing many challenges with insulin access and affordability. Lebanon’s recent financial crisis has caused a dollar shortage that, since September, has restricted the ability of medical supply importers to import vital medical supplies. First it started with masks, gloves, and other protective gear, as well as ventilators and spare parts, and now even essential diabetes supplies are sometimes unavailable. The government has also not reimbursed public and private hospitals for bills, which has made it harder for diabetics to purchase their medication and other diabetes-related medical supplies. For example, Novorapid insulin has been hard to find at pharmacies over the past two weeks.

I had the honour to participate in the WHA virtual forum on Access to Insulin and to address all my concerns as a patient advocate from Lebanon. The aim of the virtual forum was to facilitate a wide discussion between a group of experts and advocates on this issue. The crucial problem is that almost a 100 years after the breakthrough that has saved millions of lives worldwide – the discovery of insulin – many people still cannot access or afford it.

Capture
Patients like Cyrine have the power to change the world.

The fact that I was able to voice my concerns as a person with type 1 diabetes among the panellists that the forum included was very empowering. The panel included Zachariah Muriuki, Project Manager – National Diabetes Prevention and Control Program at Ministry of Health, Kenya; Dr. Kaushik Ramaiya, Consultant Physician and Chief Executive Officer at Shree Hindu Mandal Hospital, Dar es Salaam, Tanzania; Greg Perry, Assistant Director General, IFMPA; and Emer Cooke Director, Regulation of Medicines and other Health Technologies, World Health Organization.

The forum started by showing a video that displayed testimonials from people living with type 1 diabetes around the world, including the barriers they face in regards to access to insulin, and responses from health care providers. Although I’ve personally lived with diabetes for almost 13 years and have dealt with so many obstacles, it still breaks my heart when I see what people with diabetes worldwide have to go through in order to get insulin and remain alive.

When asked during the forum about the barriers that the Lebanese have been facing with access to insulin and how the government needs to address these concerns, I depicted the current economic situation in Lebanon. The government is absent, especially after the revolution that spiked in October 2019 and left behind a collapsing economy. With hyper-inflation skyrocketing at 240% and the Lebanese Lira collapsing, the government has decided to remove the subsidy from bread and combustibles. The Central Bank has set their own policies restricting depositors’ access to funds in their current dollar accounts and the transfer of money abroad, making it harder to finance imports, including of medical equipment and medicine. These issues can put people living with diabetes in a very dangerous position. With no substitute to imported insulin, and the decline in purchasing power due to inflation, how will Lebanese people be able to afford their medication?

I shared that I believe in the upcoming months we will be left with an insulin crisis once the subsidy is also removed from medication. Patient advocates in Lebanon have been trying to reach out to the government, to no avail. The only thing we can do is to continue to raise our voice until we are heard.

In another question, I was asked what it meant to have the World Health Organization (WHO) and their Member States recognize and prioritize access to insulin, and how people living with diabetes and the global community can take this issue forward. I said that once the international community admits and perceives “insulin as a human right”, the entire scope of advocacy for access to insulin would have solid foundations and would shift from voicing about lack of access to actually forcing governments to comply. As advocates, we must seek accountability from governments regarding progress on WHA targets and address hurdles and bottlenecks in the process. Governments should also set state-level targets, and develop a strong participatory monitoring framework and management information system to measure outcomes of targets under SDGs and WHA.

The panel discussed other matters such as steps that have been carried out in Kenya to enhance access to insulin, how Tanzania has also worked towards improving access and the recommendations it provides to other countries, and how the WHO is committed to improving equitable access to insulin. It was concluded that the WHA resolution on insulin needs to be comprehensive in the requests to governments and to the WHO on actions they should take. Here, civil society, governments, and WHO need to define key requests and alight goals that serve making insulin accessible.

As a Global Advocate for T1International, I will continue to push for change in any way possible. Insulin is life support and no person should have to decide between putting food on the table or affording insulin. I truly believe that we are capable of creating change. The right of access to insulin is mine, yours, and the world’s. If it is our right, then we will not stop until we get it!

Haste Makes Waste (of Pods)

Have you ever been in such a hurry to do something within a certain period of time that it works to your disadvantage?

I guess there’s a reason why they say haste makes waste…

…especially when haste results in accidentally whacking your insulin pump off your arm.

I was reminded that this can happen the other day when I had my friend over for some socially distant hang time. Just because we had to stay six feet apart during her whole visit didn’t mean that I had to be a bad host, though, and I was in a rush to bring some Goldfish for us to snack on while we sat in the sun outside. I flitted about the kitchen, grabbing the bag, a plate, and some napkins to bring out with me. When I went to open the sliding door that would take me from the kitchen to the porch, I gave myself just enough room for my body to slip through it sideways.

I should’ve walked through the opening slowly; rather, I dashed through it like I was about to cross the finishing line of a race – and my pod was suddenly, a bit violently, ripped off my arm in the process.

“ArrrrrRRRRRRRggggHHHH!” (I think that’s a pretty good approximation of the sound that I made when it happened.)

Green Yellow Paint Strokes Birthday Instagram Post
I wish I had a picture of how absurd it looked to have my pod dangling from my arm; alas, taking photos wasn’t a priority of mine in this situation.

My friend, alarmed by my animalistic emanation, asked if I was okay. I came to my senses and calmly explained that I’d just knocked my pod off my arm, and she looked on in horror as she saw it dangling by an adhesive’s thread on the site.

“Doesn’t that hurt?!” she asked in dismay.

I reassured her that no, while the actual sensation of the pod ripping off my skin didn’t hurt, it definitely stung that I was now forced to replace it even though it had only been in use for less than a full day. It sucks when I can’t use my supplies to their fullest extent because each time something like this happens, there’s a dollar amount attached to what I’m wasting, and what’s worse is that I can’t blame it on anyone or anything except myself.

Ah, well…a fresh pod was applied and no harm was done in the end. But next time I try to enter or exit that sliding door, you can bet I’ll be a lot more careful when I do so.