Underrepresented Communities and Navigating the System – A Post by Alzahrra Almajid

This was originally published on the T1International blog on June 8, 2021 and it is written by Alzahrra Almajid. I decided to share it on Hugging the Cactus because it is my goal to understand the challenges faced by the BIPOC community and learn what can be done to help. Alzahrra’s experience is a massive wake-up call that we still have a long way to go when it comes to advocating for marginalized groups. Thank you to Alzahrra for sharing her story.

I was diagnosed with type 1 diabetes when I was 8 years old. Having parents who were immigrants from Iraq and people of color was especially hard in navigating diabetes. My mom dealt with a lot of demeaning comments from healthcare providers because she was not taken seriously. In the initial months after diagnosis, her ability to care for me and help manage this new disease was often questioned. It felt like they thought she was too incompetent to understand how diabetes is treated. I remember how disrespected and vulnerable I felt because of the tone doctors spoke to us with.

When I was about eleven years old, I was hospitalized for having a high fever and diabetic keto-acidosis (DKA). On the second day of my stay at the hospital, a nurse asked me if I was purposely not giving myself insulin because it “did not make sense” that my blood sugars were still elevated. I was stunned by how demeaning that comment was. I felt so belittled in that moment that it has stuck with me all these years. Why would I want to feel that way? How could I fake it if the nurses were the ones administering my insulin at the hospital? It turned out I had an infection that was causing the high blood sugars and fever so no, I was not purposely not giving myself insulin. After that day, I started to notice how different my life was compared to other diabetics I met.

Alzahrra noticed her experience with diabetes was very different compared to that of other people with diabetes she has met.

There was not much awareness about type one diabetes in my community so it was difficult for me and my mom to find resources about what treatments were out there. We were not aware of what an insulin pump was or what a continuous glucose monitor (CGM) was. We had no idea that they even existed until I began to research diabetes on my own when I was about eleven years old. Only after I mentioned insulin pumps to my doctor, did we start discussing them as a viable option. When I learned about CGMs later on, I wanted one so bad because I was certain it would help my elevated A1cs. However, after hearing how much it cost, I knew that it was nearly impossible to get it.

Seven years after my diagnosis my brother was also diagnosed with type 1 diabetes which made the already bad financial burden worse. Although all people with diabetes struggle with how expensive diabetes can be, immigrants and people of color often do not have access to quality health insurance (or any access) so they are less likely to benefit from advanced diabetes technology. As I got older I began to understand how difficult it is to navigate a system that makes it harder for people in underrepresented communities to get adequate care.

I knew from early on that I wanted to advocate for marginalized groups. Being a person with type 1 diabetes is already mentally draining and expensive. When you add the challenges of navigating through racial or ethnic disparities, diabetes becomes agonizing. Black, Indigenous, and People of Color (BIPOC) deserve to have representation in the diabetes community and have their concerns addressed. They deserve the same level of care and access to resources that their white counterparts have. I chose to become a Communities of Color Lead for the Illinois #insulin4all Chapters because I want to influence positive change by making sure BIPOC are not left out of the conversation.

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.

Type 1 Diabetes, Disability and the Role of Legislation in Advocacy – A Post by Pramita Jasuja

This is a post by Pramita Jasuja that was originally published on the T1International blog on April 9, 2021. I am sharing it here today because I thought it was an interesting take on how type 1 diabetes is (or in this case, is not) recognized in another country. Thank you to Pramita for sharing her story and explaining the importance of legislation in advocating for people with diabetes.

Every new type 1 diabetes (T1D) diagnosis can be intimidating, both for the person and the family members. Many people with T1D are told they should be able to live a “normal” life and that they can do everything that a person without diabetes can do.

As a newly diagnosed child with blood sugar levels of over 570mg/dl, all that was on my mind was T1D. But a year post-diagnosis, when daily needles became the new normal, I was told by my family that I was completely fine and that there “was no need to tell anyone” about my medical condition. “I am normal” was stuck in my mind and I took it very seriously. So much so, when my endocrinologist asked me as the “patient” to sit near her chair, I replied: “I am not a Patient.” Both my parents and the endo smiled.

It’s been 7 years since that incident and I now reflect on my statement, especially over the word “normal”. Calling yourself “disabled” can have negative connotations attached to it. People often refrain from using that word, as if living with a disability is abnormal. Though if we do this, we deny a part of us. When it comes to legalities, the word “disability” is significant. Disability legislation considers people living with disabilities as subjects who possess rights capable of claiming that they have a disability – not those simply given charitable treatment. This was spelled out in the UN Convention on the Rights of People with Disabilities (CRPD), the human rights convention that hit the highest number of signatories.

I live in India. It’s one of the countries that has ratified this convention, but it’s also a country where myths and stigma overtake the real issues. A report by WHO found that in low-income countries where superstitions surrounding diabetes are common, the fatality rate is high. India is no exception. Due to a lack of proper health care facilities and a lack of national registry exclusively for T1Ds, children in the country are facing late diagnosis and even death. Considering the level of poverty in the country, blood test strips and continuous glucose monitors (CGMS) should be subsidized. Unfortunately, that is not the case. People with T1D are rationing them, which makes diabetes management challenging. Plus high blood sugar levels and/or ketones hinder the ability to perform “normal” day to day activities.

Insulin is like water. Someone with T1D can not live without it, but medical insurance in India does not cover it, and not every type of insulin is subsidized. So for those with T1D and financial struggles, there are the worries about the price of life-giving insulin and medical supplies.

After considering these facts, let’s look at the definition of “person with a disability” under the Rights of People with Disabilities Act (RPWD) 2016 that was enacted after India ratified CRPWD: “a person with long term physical, mental, intellectual, or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.”

“When it comes to legalities, the word “disability” is significant. Disability legislation considers people living with disabilities as subjects who possess rights capable of claiming that they have a disability – not those simply given charitable treatment.”

The sad part, however, is that T1D is not considered a disability under this Act, even though the current problems faced by people with T1D in India do “hinder (their) full and effective participation in society equally with others”. I’m arguing that you can not tell every T1D to live “normally” when the condition doesn’t always allow for it. The community is suffering silently and legislative action is being denied.

It is through the recognition of injustices and assertion of our rights that we can ensure equal opportunities. T1D advocacy is emerging in India and as a collective we are highlighting these issues. Change is happening. In 2020 in Kerala High Court, a public interest litigation was filed over the issue of including T1D in the list of disabilities and creating a national registry for people with T1D. This step is important. Recognition of T1D as a “disability” would obligate the government to fulfill what is laid down in the Act, for example providing affordable and accessible health care, ensuring the implementation of non-discrimination clauses and creating special faculties at educational institutions.

Seven years after that endo visit incident, even though I will never be able to deny that I am a patient, what I can do is advocate for patient rights. At a macro level this means standing up for the community. Recognition under the legislation of people with diabetes as those with disabilities is the first step, a chapter in the book of advocacy in my country of India.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Dexcom G6: Available to Who? A Post by Tracy Ramey

This post was originally published on the T1International blog on February 17, 2021. I wanted to post it here on Hugging the Cactus because it was incredibly well-written and eye-opening. Thank you to Tracy Ramey for sharing her perspective and prompting me to really think about diabetes technology and who it is available to you. I couldn’t agree more with your closing thoughts. Read on to learn about Tracy’s thoughts on the Dexcom G6, its availability, and the problems with the commercial that aired during Super Bowl LV.

Celebrity. Celebrity in a filter. Technology. Sleek. Celebrity showcasing a device that many people with diabetes can’t afford and telling said people with diabetes that they should get with the times. That’s it. That’s the entire commercial for Dexcom G6, a continuous glucose monitor (CGM), that aired during Super Bowl LV Sunday. To the world outside of the diabetes community, it presents an easy solution to the problem of diabetes management, a quick aside they can tell that person with diabetes they know in the office on Monday.

“Hey I saw Nick Jonas in that commercial. He said you don’t have to prick your finger anymore! Ya know, he doesn’t even look like he has diabetes.”

As a mother of a child that has type 1 diabetes, managing this condition is always on my mind. I am my child’s “pancreas momager,” if you will. For the past three years I have endured well meaning people giving advice, offering empty platitudes, and not understanding the tightrope we walk as a family attempting to raise a well rounded human that is growing physically and emotionally while course correcting a disease that is never the same day to day. I hear often how diabetes is manageable, an understanding that is as true as it is nuanced. Managing diabetes is not a one size fits all leather jacket. Said person with diabetes will assuredly be giving Diabetes Splainin’ Danny an immense amount of side eye.

With this ad, Dexcom and Nick Jonas had an immense opportunity to truly advocate for all insulin dependent people on the world’s stage. Instead of dispelling hurtful myths such as diabetes being caused by eating too much sugar, or insulin being “so cheap, it’s like water”, they created new ones like people with diabetes do not need to prick their fingers. The ad conveyed that there is an easy solution to diabetes management, which is a huge blow to everyone that has been fighting with insurance companies, pharmaceutical companies and device companies just to get basic insulin and other vital supplies covered, including glucose monitors.

Dexcom’s ad conveyed that there is an easy solution to diabetes management, which is a huge blow to everyone that has been fighting with insurance companies, pharmaceutical companies and device companies just to get basic insulin and other vital supplies covered, including glucose monitors.

Most people with diabetes know about Dexcom and the other major continuous CGM company, FreeStyle Libre by Abbott. Assuredly, if they don’t have one of these devices, in most cases it’s not for lack of understanding – it’s due to high cost. For many uninsured or underinsured insulin dependent people who are already struggling to afford their insulin, the Dexcom (with an initial out-of-pocket price tag for receiver, transmitter, and pack of 3 sensors that exceeds $1,000) is technology that remains out of reach. The ad boldly proclaimed “It looks like the future, but it’s available now.” Available to who? I know people that have had to plead with their insurer to keep their Dexcom if coverage changes occur. Many can’t get it covered in the first place, even though being able to have CGM technology is a gamechanger in the life of people living with diabetes. IT affords a level of control that is hard to think of giving up once you experience it.

But again, we must ask: who is this available to? This technology requires a prescription, and we know that Black and Brown communities are being offered access at much lower rates than their white peers. I am a Black woman with a family history of type 2 that puts me at greater risk of developing it. Interestingly, despite having several family members with type 2 diabetes, my child with type 1 is the first person that has CGM technology, and that was because I pushed for it.

You know what I’m getting at. The elephant in the room is medical racism and implicit bias. When cries for justice rang out for Ahmaud Arbery, George Floyd, and Breonna Taylor, many companies found themselves scrambling to make sure they appeared to sympathize with Black people and the systemic disregard for our lives. But here we are, almost a year into the pandemic, with a January 8th, 2021 headline from Endocrine.org that reads “Black people with type 1 diabetes, COVID-19 are four times more likely to be hospitalized for diabetic ketoacidosis.”

Companies that make a profit off of medical devices as life altering as Dexcom owe it to their consumers to look at the data and adjust to get their technology onto the bodies that need it most. Instead of addressing how they are going to provide a solution to inequities that black, Indigenous and people of color (BIPOC) face – especially Black patients – in comparison to their white peers, Dexcom paid $5 million plus for a Super Bowl ad that ignores barriers to access completely. This is chump change when, according to Yahoo!Finance, they earned $1.93 billion in 2020.

Dexcom offers a life saving product that I am fortunate enough to be able to use for my child because of my health insurance. I am acutely aware that many who look like us and need it the most don’t have access to CGMs like Dexcom’s G6. The Black and Brown people that are experiencing medical systemic racism deserve better. All insulin dependent people deserve better than a 30 second ad that wags it’s finger at all of us silly Billy gumdrops that are still pricking our fingers. Don’t spit on me and tell me it’s raining.

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!