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Posts tagged ‘T1International’

Guest Post: #Insulin4All Protest at Lilly

T1International founder Elizabeth Rowley guest posted before the #insulin4life rally in Indianapolis, and today her colleague Karyn Wofford is taking over SUM to share more about the protest itself, their goals, and how the diabetes community can continue to help.

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For nearly 18 years, I’ve had type one diabetes. I’ve been on “life support” via insulin over half of my life. I heard another person with type 1 diabetes refer to it as life support, and that really struck me. When we think of that term, we envision an ill person with breathing tubes, heart monitors and a medical team surrounding them. Diabetics truly are on life support, but it’s invisible to those around us and comes from a small glass vial or plastic pen.

When in my teens, I woke up every day and took what I saw as mere “medicine” to treat my disease. It wasn’t until I grew older and had legitimate fear of not being able to afford insulin, that I no longer thought of it as medicine. I know now it is life.

Speaking out at the #Insulin4all Demonstration

On September 9, I gathered with people with type 1 diabetes, parents, and others who had been directly impacted by diabetes to speak out in front of Eli Lilly Headquarters in Indianapolis. We spoke out against outrageous insulin prices that are likely a result of price gouging and collusion among the “big three” insulin manufacturers. Prices have been jumping in leaps and bounds over the past 20 years, and now have reached a point where patients are paying more than their mortgage to foot the monthly bill. Lives have been lost so these companies can pull in sickeningly high profits.

T1International served as the primary organizer of the event, while People of Faith for Access to Medicines (PFAM) was a huge contributor whose representatives went above and beyond to make everything happen without a hitch.

Just a few years ago, I started becoming much more vocal about having type 1 diabetes. I’d finally realized that there was so much I could do to raise awareness and educate people about the kind of diabetes I have, type one. Awareness is an invaluable tool in our fight for affordable insulin, because there is great misconception that type ones can just stop eating sugar to “treat” or “fix” our diabetes. Of course, this is untrue. No one’s body can survive without insulin, and people with type 1 diabetes cannot produce insulin, so the medicine in essential to us. Insulin = life. I was able to voice this at the demonstration, along with my personal struggles.

A Community Uniting

At the demonstration, I was moved hearing the stories of Mike Hoskins and Angela Lautner, who also have type one diabetes. Instantly, I felt a connection with them, and an overwhelming sense of community amongst all those who attended. The energy in the crowd was contagious; people who’d only met moments before were lending shoulders to cry on and unifying as a force. I think we all realized something really special had been ignited, and we are eager to keep pushing forward.

Clever chants and signs were aimed at the enormous central Eli Lilly building across the street. One protestor toted a Frederick Banting doll, while others wore shirts with phrases such as “give me insulin or give me death”. Everyone was loud, powerful and to the point, with no fuss or crazy antics. We didn’t want to cause anger, we wanted to provoke thought. A powerful message executed with passion and constructiveness was the core of the rally.

I heard many stories, like the one of a grandmother caring for her preschool-aged, type one grandson. Her life is consumed fighting for his rights and ensuring he has a future. Another mother was there with one of her three diabetic children. I struggle with the costs of only myself; I can’t imaging paying three times that amount.

The Impact

Local Indianapolis news cameras and reporters were amongst the group, and our cries to Eli Lilly were amplified. A response was released from Eli Lilly later that night:

“We are pleased that people in the diabetes community are engaged in this issue and demonstrations are one way to do so. It will take continued effort across the healthcare system to affect real change and Lilly is committed to working with others to make it happen. This topic sparks a passionate response from people who are affected and we are committed to finding solutions. Lilly has been an active participant in the insulin access dialogue for a long time, and that work will continue. In the last year, we have introduced a number of initiatives to help reduce the amount people pay at the pharmacy until broader changes occur.”

It is encouraging that we caught their attention and received a response, but people with diabetes know that current programs are only short-term fixes, or “bandaids”, as noted by an Eli Lilly Representative. On the day, we asked for three things, and we continue to ask Eli Lilly and the other insulin manufacturers to address them.

  1. Be transparent about how much it costs to make one vial of Humalog insulin
  2. Be transparent about your profits from each vial
  3. Lower the price of insulin

We are hopeful we can achieve this, especially as we ensure that the nation understands what exactly it means to have type one diabetes, or to be insulin dependent. We hope that our next stops will include New Jersey based insulin companies Novo Nordisk and Sanofi, as they are as much to blame as Eli Lilly.

A fire is burning in the hearts of those impacted by insulin prices, and with six million Americans depending on insulin to survive, this movement is anticipated to become an uprising people can longer look away from. The Eli Lilly #insulin4all demonstration has moved the online initiatives to in-person confrontation that cannot be ignored. If more and more people take a stand, we can make lower insulin prices a reality.

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Karyn Wofford is a writer, type 1 diabetic and advocate. She’s had diabetes for nearly 18 years and now serves as an advocate for T1International. Her goal is to raise awareness about her disease, while providing support for fellow people with diabetes through her writing.  

Guest Post: People with Diabetes are Demonstrating for #insulin4all

Today’s guest post comes from Elizabeth Rowley, director of T1International – an organization working towards sustainable access and affordability of insulin, diabetes supplies, medical care and education for all people living with type 1 diabetes.  They are planning a protest at Eli Lilly on September 9th, and Elizabeth is borrowing SUM today to share the who, what, where, and why of that plan.

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The diabetes community has watched in agony as the prices of insulin have increased again and again, with the most recent outrageous increase of 7.8% by Eli Lilly. To get right down to it, the list price of Humalog was $274.70 per a vial as of May 2017. That’s a price increase of 1123% since June 1996.

Insulin manufacturers keep the cost of insulin production a tightly-guarded secret, but U.S. prices are likely hundreds of times higher than the cost of making the drug. Patients in the U.S. and internationally have died due to an inability to afford insulin, and physicians report seeing an increasing number of insulin-deprived patients coming into emergency rooms in crisis. The insulin price increases have been called “price-gouging, plain and simple” by U.S. Senators and a “racket” by an endocrinologist writing in the New York Times.

We in the diabetes community have expressed our frustration online, in meetings with these companies, and in numerous blog posts. T1International has also had conversations with some of the “big three” insulin producers about insulin affordability, but unsurprisingly we were met with standard PR responses and blame shifting. Some of our other attempts to talk have been ignored, but the diabetes community as a whole has been talking to Lilly and others about these issues for a long time. Eli Lilly, Sanofi, and Novo Nordisk know that people are outraged, suffering and dying because insulin costs too much.

I think most of us can agree that none of the concerns that have been expressed have been taken seriously enough. Taking patients concerns seriously does not mean somber conversations, hosting forums with advocates or creating limited charity programs. It means actually making insulin affordable and not wringing every last dollar of profit out of desperate people. It means putting people before profits because pharma’s prices are putting people in danger.

That is why an #insulin4all demonstration is being held outside of Eli Lilly’s headquarters in Indianapolis on September 9th. People with diabetes are demanding change.

Specifically, we are asking Eli Lilly for three things:

  1. Be transparent about how much it costs to make one vial of Humalog insulin
  2. Be transparent about your profits from each vial
  3. Stop the immoral act of price-gouging and lower the price of insulin

graphic provided by T1International

Why Eli Lilly, you ask? The location of our partner organizations, People of Faith for Access to Medicines and Public Citizen in Indiana, makes Lilly a good first target. On September 8th, in solidarity with the protesters, we will also be holding an online day of action about insulin pricing – addressing all three players in the insulin market.

We know that Novo Nordisk and Sanofi are just as much a part of the problem as Eli Lilly, and that all of them must be held accountable. We are very open to planning something similar outside Novo and Sanofi in the future, so if you want to help organize, please get in touch!

These companies’ business models are dependent on government decisions about regulations and bulk purchases of their products, so the companies absolutely will provide transparency and lower prices if the people and their representatives demand it. This demonstration can amplify our cries and raise public awareness that the price gouging must be reined in. We believe the momentum will continue to build, and we hope you will join us in speaking out.

If you are planning to attend the Indiana demonstration or want to stay up to date with the event, join us on Facebook in our #insulin4all Action group.

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Elizabeth Rowley is the Director of T1International. She was born in the United States and has lived with type 1 diabetes for more than 25 years. Elizabeth moved to London in 2011 to complete her Master’s degree in International Development at the London School of Economics and Political Science and she founded T​1​International in 2013. T1International’s aim is to unite the diabetes community and advocate for equal access to insulin, diabetes supplies, medical care and education for all people living with type 1 diabetes, no matter where they live. Elizabeth believes that where you were born should not determine whether you live or die with diabetes, and she is confident that by working together we can find long-term solutions.

 

 

Guest Post: T1International – Making an Impact Through Art.

With Diabetes Art Day just behind us and now in the middle of the Spare a Rose, Save a Child campaign, the concept of art and awareness for the greater diabetes good is on the forefront.  Which is why I’m excited to host a guest post from Elizabeth Rowley, founder of T1International, who is aiming to raise funds for the AYUDA organization through artwork.  Take it away, Elizabeth!

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I’m Elizabeth Rowley and I am the founder of T1International. I have lived with type 1 diabetes for almost 22 years and my passion is diabetes around the world, particularly access to insulin and diabetes education. It is hard for me to accept the fact that people are still dying due to lack of insulin, despite it being made available for use by people with diabetes almost 100 years ago. My background in international development and hunger to learn more about these problems and their potential solutions let me to create a web site about global diabetes organizations and topics.

Through T1Internatioanl, I discovered the organization AYUDA (American Youth Understanding Diabetes Abroad) and I knew that it was something I wanted to be a part of. Having recently completed the IDF Young Leaders in Diabetes training in Melbourne, where I connected with young people living with diabetes from all corners of the globe, I was inspired to do more to create the change I want to see in the diabetes community.

I am fundraising to volunteer and to make AYUDA programs possible. In June, I will go to the Dominican Republic to plan and put on a summer camp for kids with diabetes (and their families). Diabetes camp meant the world to me when I was growing up, so this is the perfect opportunity for me to give something back and ensure that kids who are lacking in supplies and education get the knowledge to help them survive and thrive with diabetes. For many, it will be their first chance to interact with others living with diabetes. You can read more about my motivation for the program, and the program itself, at my fundraising page here or at www.t1international.com/ayuda.

I am not taking this fundraising lightly. My husband (who also has type 1 diabetes) and I recently opened an online marketplace through T1International, which has been something we have wanted to do for a long time to use our combined interest in art, and all things creative, to support international diabetes causes. The T1I Marketplace is an online shop where you can purchase artwork made by people with diabetes (and supporters of people with diabetes) in exchange for donations to the AYUDA program. Every item you ‘buy’ will support kids in the Dominican Republic to live happier, healthier lives – so it’s a win-win! In the future, we hope that the T1I Market can be used to fundraise for other causes as well, so we won’t stop after we reach the AYUDA target.

Be sure to have a look, and please note that we can customize almost anything to make sure your art is special to you. Here is a selection of some of the diabetes-related art up for grabs at the marketplace:

To see more art and donate/place your order, visit the marketplace, and you can visit the AYUDA website for more information about the registered charity.  Thank you!

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Thanks, Elizabeth, for making a difference in our global community!

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