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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.

 

 

5 Comments Post a comment
  1. Liz S. #

    This is soooo important. Especially timely for our family, as I just got the bill for our daughter’s 3 month supply. $2800 dollars! When she was first diagnosed in 2001, that same amount of insulin was $900. And I was having a heart attack then! There is absolutely no reason that insulin should cost what it does, especially in comparison to the pricing in other countries. Thank you for sharing this information, and our family will look forward to doing what we can on September 8th!

    08/10/17; 8:21 pm
  2. Adrianna #

    I am astounded at the cost of insulin. I am on Medicare and use a pump, therefore I should be able to receive insulin at no cost. There was one pharmacist who worked hard to do the research, and I paid $0 for three vials. For my next order, I think the pharmacist was just too lazy to do the work and we ended up paying $150 for 3 vials. Still a pittance, I know, compared to others, and I’m grateful for what I have.
    When I told my endocrinologist, her response was, “Don’t worry about it,” and gave me four vials of her samples. I don’t understand how Novo Nordisk can give free samples to the doctors, but think they want the dr to prescribe and get the patient hooked on their brand. It’s the one I use in my pump.
    I use very little insulin daily but the pump’s pod requires that I fill to the minimum of 85. After three days there is still much left, which is then just discarded. Each time, my heart bleeds for those who cannot afford their insulin and are dying for lack of it.
    There’s no way hubby and I can go to Indianapolis, but we will be online protesting when that event occurs.
    Thanks for listening and I’m sorry this became so long.

    08/11/17; 11:31 am
  3. Brenda #

    I will be there in spirit and online. This terrifies me as I am a Canadian about to immigrate to the US. In Canada a vial of Humalog costs about $35. It is outrageous that it costs that much in the US. This and all life sustaining drugs should be affordable. It is not like we caused T1D, not that I think people with diseases that are preventable should pay more. But insulin is for life, we don’t get to be cured at any point. The government needs to step up and regulate this!

    08/18/17; 8:59 am
  4. theo #

    Datapoint: In Romania 3 months supply of Humalog (4500 units, 3 boxes of pens), Lantus (3000 units, 2 boxes of pens) and 100 glucometer strips (Bayer Contour plus) cost about $300. All together that is 😛

    08/23/17; 11:49 am

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