Hey friends and family,

 

I have shared a couple of emails leading up to my T1D trek (you can read all here), and in this email, I wanted to share a bit about advocacy and movement-based work that I participate in, as well as advocating for myself and others with T1D (Type 1 Diabetes). I, for 20+ years, have lived in Toronto and participated in many social movements for justice – things such as advocating for no-sweatshops, supporting and volunteering in radical newspapers, migrant justice, Indigenous advocacy and land-back movements, climate justice and freedom for Palestine and for all oppressed peoples. I came across this post for T1D and safety when attending demonstrations – something I have planned on my own many times – and while I manage it in my own way (not following all guidance in the post), this is an FYI on the things I have to think about before going out into the streets. There are so many movements to list and people world-wide working to fight for their rights, their livelihoods, against opressions and sanctions, and fight for their lives – and I encourage everyone to be in solidarity and show our support for these movements. (hit me up if you need some links).

 

Now dvocacy on a diabetes level has been new to me – while I have lived with T1D 33 years, I never thought about needing to advocate for myself. I have been privileged to live in a country that allows me to access (it does not give freely) the insulin I need without paying exorbitant fees, BUT the insulin I use daily to stay alive is NOT free. I have had issues such as DKA (my blood sugar is very high and I get very sick), or low blood sugar (where someone has had to help revive me), and have visited hospitals for support. I’ve experienced having ti fight with nurses and doctors and tell them I know how to take care of myself and to just give me the kind of insulin I need and use – and them not giving it to me as they are following protocols – and therefore caused me to be stuck in hospitals for days, instead of hours after fixing a DKA. In the last 7 years or so I’ve had to advocate for myself in these situations, which inspired me to look deeper, and make connections like with Connected in Motion – and the trek I am about to take in less than 3 weeks now, but also advocacy for access to insulin – the very hormone that keeps me alive.

 

Insulin was developed by in 1921 by Frederick Banting and Charles Best and patented for $1 at the University of Toronto (right here, where I live!). ON January 23rd, 1923, the patent was awarded for insulin, and they sold the patent to the University of Toronto for $1 each. Banting said, “Insulin does not belong to me, it belongs to the world.” – as his desire was for everyone who needs it to be able to access it to stay alive, rather than being controlled by a private entity for profit. You can read more about this history and others involved in this article here. I want to highlight the pricing change from this article here: “In order for the insulin to be mass produced and widely available, the pharmaceutical company Eli Lilly and Co. were given the rights to do so [in 1923]. While this incredible advancement was intended as a gift from the discoverers [Banting and Best], 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.” And now the gift of insulin has been price-gouging patients all over the world, keeping it out of the hands of those who need it, and countless people have needlessly died; this, when insulin has become cheaper and cheaper to manufacture over the years.

 

“To cope with the yearly increase in price, many diabetics are forced to ration—administering lower-than-prescribed doses of insulin. The widely publicized death of Alec Raeshawn Smith due to insulin rationing is just one of many such cases.” (source) It is scary, upsetting, and tear-jerking for me to read stories like this one about Alec, and I can relate; I think probably every T1D has thought about how long they could live based on how many vials of insulin they have in their fridge… I will share a personal story about insurance vs no insurance in Canada (which is far better than the USA for example especially with news of the new “beautiful” bill that was passed).

 

I had medical insurance growing up through my parents, then as a university student, and in various jobs I held. I left a job in 2015 for personal reasons, but left with no medical coverage. Leading up to quitting, I saved/rationed my insulin to ensure I had enough to last for at least a year (without expiry). Vials of insulin (2/month) were about  $100/month with dispensing fee – and while it sounds like not much, I also have to buy supplies to inject insulin, glucose test strips, and pump supplies; I calculated supplies for a year as just over $5000 without insurance. It feels painful (and embarrassing) to admit, but when I was nearing the end of my supply of insulin, I continued to use the remaining expired insulin (after being advised not to) for as long as I had some left – and I also enrolled myself in a medical experiment/test to obtain blood glucose testing supplies for free ($100/box – and I used 2/month). While I managed this alone, it also was embarrassing to tell anyone (even when I knew I would have had support). 
 
I share all of this because its personal, but its also political – and my hope is just educating more folks in my life about what comes along with having T1D. It has been a process to get here, and I head on my trek July 28-August 4th (although i leave for Newfoundland on July 23rd!). As always, I would love to keep you in the loop on my progress and share more about my life with diabetes, but if you don’t want to receive my emails anymore, just let me know and I’ll remove you from this list!
 
Finally, for those wondering how they can help me reach my fundraising goal you can donate via the following link: https://www.zeffy.com/en-CA/fundraising/victoria-barnett – which will direct you to my fundraising page. Upon donating, you’ll receive a confirmation email and a Canadian tax receipt for your records. *Note if you work for a large company, sometimes they have corporate donations matching – Here at the bottom is a draft letter  if you need one.* Thank you for reading this, and thank you to those who have already supported!

 

-Victoria

 

*****
Sources:
History of Insulin Creation + Price Increase with video: https://www.t1international.com/100years