For a special message:
Pharma and industry folks, we invite you to discuss your thoughts on insulin in an upcoming Coffee Dates interview. Here is your chance to share your point of view. If interested, please contact me.
Elizabeth Rowley, Founder and Director of T1International, joins Very Light, No Sugar for the second interview in the Coffee Dates series. I encourage readers to visit the links included by Elizabeth and to help the #Insulin4All movement however you can.
A: What led you to develop T1International?
E: In short, I recognized how privileged I was to grow up in a place with access to good medical care and the supplies I needed to live a healthy life. I could not – and I still cannot – understand why health is not treated like a human right for everyone around the world.
As I learned more about what people with type 1 diabetes face in all parts of the globe, I wanted to address the problems by working with people most affected. I could not find any other groups tackling the issues through advocacy, so I thought T1International could bring the diabetes community together to ensure that no one dies because they cannot access or afford something as basic as insulin or test strips.
A: T1International’s current campaign of #Insulin4All has been making lots of good noise on social media. What is one simple, immediate way for individuals to help out the cause?
E: Sign our Access Charter and spread the word. It takes two minutes to sign and shout about this on social media. Signing will not only show that you support five basic rights for all people with diabetes, but it will also add to the growing list of individuals and organisations who support these rights worldwide.
Advocates around the world will use this charter and the signatures as evidence for the growing global support behind the #insulin4all movement. It will allow advocates for type 1 diabetes to prove to the government that there is international support and pressure for sufficient access to insulin, diabetes supplies, care, education and protection for everyone with diabetes.
A: There is a persistent call for transparency in the insulin access and affordability realm. Ideally, what would this transparency look like?
E: In one sense, transparency would mean that pharmaceutical companies would no longer be allowed to raise or set prices for their products without true justification. The excuse that research and development is the main reason for high prices is not cutting it anymore. Insulin pricing is currently a mystery. Costs vary wildly around the world, and even within a single country. Simply being able to know the cost of production and the true list price that companies set for a drug like insulin would be a huge step forward in transparency.
Transparency is also important when it comes to patient advocacy organisations. It is important for all of us to think about how much potential there is to be influenced or ‘bought’ by industry. A recent USA study found that 67% of a sample of patient advocacy organizations (virtually all of which were not for profit) said that they received funding from for-profit companies. Relationships between patient organisations and industry can influence their actions “in ways that might not align with the interests of the constituencies they represent.” The same article notes evidence that financial relationships can create bias in areas like medical research, so non-profits and patient organisations are subject to the same concerns. [Susannah L. Rose, PhD; Janelle Highland, MA; Matthew T. Karafa, PhD; et al]
Many diabetes organisations take money from pharmaceutical or device companies specifically. No one wants to compromise their income, but there is concern that orgs taking industry funding are keeping quieter than they would if their funding came from other sources. At the very least, organisations can be more transparent about where their funding comes from by having a clear declarations webpage that is obvious to visitors. We hope groups will consider that continually accepting funding from pharma companies often “creates a routine awareness among sponsored groups that one doesn’t bite the hand that feeds it.” [Ray Moynihan, PhD; Lisa Bero, PhD]
A: We have discussed the great power of personalizing the insulin story. Give us one brief narrative of how T1International’s work directly influences the life of someone with diabetes.
E: It is literally the difference between life and death. It is also the difference between feeling alone and knowing you have a community rallying behind you. Salomey and [her] mother in Ghana had to sell most of their belongings to be able to afford Salomey’s insulin – they were running out of options. With support from a local group (Diabetes Youth Care) and T1International, Salomey was able to get the supplies and support she needed. She finished high school in 2015 and she is working to ensure she can purchase the supplies on her own. T1International continues to work with Salomey and other Diabetes Youth Care advocates in Ghana on a larger scale, advocating for #insulin4all so that Salomey’s story will be replicated many times over.
A: Where do you see T1International’s work going in future years?
E: All of our work moving forward will support our strategic plan, which focuses on four different areas including:
More specifically, in the near future we plan to carry out online advocacy trainings focused on the content from our advocacy toolkit. We would like to hold open sessions for advocates to come together to talk about best practice, share ideas, and talk strategy related to the specific issues they want to tackle locally or globally. Further afield, we would like to do larger, in-person training sessions with groups around the world. In the meantime, we won’t stay quiet about the need for transparency and #insulin4all!
A: Is there a specific geographical area that is high on the priority list for insulin access assistance in 2017?
E: It is impossible to prioritise one country over another when so many people are still dying from type 1 diabetes in so many countries. We would like to see more data collected, perhaps through establishing diabetes registries, in Africa as a whole. There needs to be more government prioritisation of access to medicines in nearly every country, which is why we are committed to supporting people and communities worldwide.
A: Favorite beverage?
E: Flat white 🙂
Many thanks to Laura Marston for joining us as the inaugural guest on Very Light, No Sugar’s Coffee Dates interview series. With a template similar to the brief “getting to know you” interviews in pop culture magazines, VLNS’ Coffee Dates provides a snapshot of important people, entities, and topics in the healthcare world.
A: I just have to ask: How badass is it to be a video game lawyer?
L: It’s an absolute dream job. I work alongside the most brilliant minds in the gaming industry (*cough* Todd Howard *cough*) and work for a truly incredible company. Plus, after spending ten years working for large law firms as an IP trial attorney, I’m just happy I don’t have to wear a suit. 🙂
A: You have elevated the insulin access and affordability causes through Twitter and interviews with the likes of the Washington Post. Even President Obama has noticed your humble yet lifesaving advocacy! What would you recommend to individuals looking to get more involved, whether at the local level or beyond?
L: Start small. Start anywhere. TELL YOUR STORY because it’s important and it matters. You may be surprised who relates (in my case, it happened to be Senator Bernie Sanders!) Passion and the truth will trump greed and lies every. single. time. And our passion is endless because our lives literally depend on this issue.
A: If you were to describe the affordable insulin cause in 140 characters (give or take- humor me here!) to someone who does not know much about diabetes, what would you highlight?
L: The patent for insulin was sold in 1921 for $3. Almost 100 years later, a month’s supply of insulin costs over $1,000. The price of insulin affects not just the un- or underinsured, but all of us. Our country was founded upon the individual rights to life and liberty. All humans need insulin to live, and injections of insulin are necessary to sustain life for T1Ds. Thus, access to insulin is a basic, fundamental human right.
A: What’s up next for 2017?
L: Look for more localized advocacy work, as well as a federal advocacy initiative highlighting the importance of the ACA in the wake of skyrocketing insulin prices. Anyone interested in getting involved in our US-specific insulin advocacy efforts should contact me at email@example.com.
A: Cream in your coffee?
L: Cream + about a million Splenda. 🙂
25 years on a Lilly medal + 1 test strip representing another year = 26th diaversary
Last year I had many words, and blog followers reported that they kept Kleenex in business while reading.
This year, only a few terms come to mind:
Anger. Insulin. #weneedacure. Emotional Health.
If diabetes takes a backseat in life, it is not for lack of trying. Rather, it is for resetting and rising again.
Reese has taught me to appreciate the simple joys of reliability, and love.
Here’s to more +1’s.
My 2-year-return-to-insulin-shots-anniversary came and went a few weeks ago. The anticlimactic day was all the validation I needed to know that this was the right choice for me. I no longer count down the days, weeks, or months on shots; they are my new normal until I switch things up again or diabetes is cured.
People probably wonder why I still harp on my defective insulin pump saga, and the truth of the matter is that one can talk as much or as little about trauma as one sees fit. Medical trauma is particularly cruel; our already-limited “control” further fades away as our cells cry out for insulin. I continue to harp on this because the wounds are still fresh, however many years after the triage. Yet the bandages of an engaged healthcare team have eased the pain, and I finally feel better.
Two years ago I feared that I would die of ketoacidosis while sleeping on my couch. I worried that the graduate school experience I had always dreamed of might slip between my fingertips. Or worse, that the mental desperation would become too much- that in my attempts to be heard my voice would eventually fade away.
Multiple daily injections (MDI) are not always pretty, but they are a guarantee that insulin is getting into the body. MDI is literally and figuratively another shot at life. (More to follow, but not everyone has this guarantee currently; they deserve a chance, too.)
Two years later and I have successfully completed my Master’s degree.
I flew to California twice to participate in Stanford Medicine X.
I didn’t die on my couch.
And I was too busy living to remember that it was my 2-year Shotoversary.
Insulin makes it happen.
Reese and I wish you a Merry Christmas, Happy Holidays, and a wonderful year to come. Thank you for reading Very Light, No Sugar this year. We’ll see you in 2017!
Reese loves her new chew toy from Santa!
I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life. There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).
Here’s a droplet:
When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee. Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.
That’s sort of how I feel lately. The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here. The answer is that there is no black or white response- only more questions, and more places to go. The best work I can do at the moment is simply to voice this.
I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive. I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes. I am angry that we do not have a cure. I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have. Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.
However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff. Their love has never wavered, and has inflated into a life raft when needed most. (Thank you).
Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story. You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you. Perhaps you desperately need to be heard, too.
Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.
So, I switched things up and adopted a guinea pig.
This is Reese. She is colored like a Reese’s cup.
She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.