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Posts tagged ‘insulin’

Aug 10

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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.

 

 

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#Insulin4All: A Chat with Elizabeth Rowley. Guest Post: T1International – Making an Impact Through Art. Guest Post: #Insulin4All Protest at Lilly

Feb 26

7 Comments

Open the Door.

For several weeks, I was flipping open the charging port on my t:slim insulin pump and plugging it in while I was in the shower.  But then I noticed the charging port cover was looking a little worse for the wear, and I connected with a friend about best practices.  (“Best practices” standing in for “How the hell do you charge this thing without breaking the door off?”)

Turns out the door swivels.  And swiveling the door keeps it from ripping.

Swivel that door! #tslim

A photo posted by Kerri Sparling (@sixuntilme) on

Well I’ll be (… more careful, more aware, a swivel-er).

(Also, you tell me if “Open the door” as a post title immediately made you think “get on the floor … everybody walks the dinosaur.”

 

[Tandem disclosure]

 

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Jan 13

20 Comments

Hypo Perspectives.

Last night my low alarm went off like a siren in my bedroom, partly because I had hooked my phone up to a bluetooth speaker to (successfully) help amplify the Dexcom alarms, but mostly because my blood sugar was 50 mg/dL.

How the alarm didn’t wake up my daughter (clad in Captain American pajamas and asleep in my bed because Chris was out of town last night) is beyond me.  How it didn’t wake me up the first few times it went off is beyond me as well, since I was low for about 35 minutes before actually acknowledging it.  A text message from my husband, asking “Are you awake and drinking juice?” grabbed me from the fog.  (Thank you, Dexcom Share, for making the “Big Brother” moments worth the moments when I need a hand.)

Some lows are textbook ones in that they employ symptoms like a sweaty forehead and clumsy hands, but a juice box or some glucose tabs or a banana can take the edge off those symptoms at first bite, the adrenaline surge of the low quieted by a chewing jaw.  These lows don’t leave a hangover or a residue of panic.  They just happen, and then they’re over.

Other lows are so odd, so disconcerting, so thick with confusion and hypo fog that I find myself unable to put the straw into the juice box, or to even reason with my brain that a juice box is necessary.  Last night, my hypo-addled hands weren’t able to push me up onto my elbows so that I could eat or drink anything without spilling it all over the bed. 

My kid slept beside me, unaware and occasionally stretching so her hands tangled in her hair.

I frigging hate these kinds of lows.  Somehow, I ended up treating with juice and felt the need to wander downstairs into the kitchen and have a box of raisins.  And then a second box of raisins.  And then another glass of juice.  I remember standing at the kitchen island and taking two units of insulin after grossly over-treating this low, still wobbly from still being in the low.  I know I didn’t need to eat anything else after that first juice box but for some reason, my body needed comfort.

In that moment, I’d trade a 250 mg/dL for the waves of nausea and unconsciousness that lapped at me.

I went back to sleep damp with sweat, covered in juice.

This morning, the plastic sleeves of two juice boxes were on the bedside table.  I corrected the high blood sugar I had eaten myself into.  The bedsheets are in the wash in efforts to remove the carb count from their thread count.

The trench of a very unsettling overnight low blood sugar and the mountain that followed. #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

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Dec 7

2 Comments

#Insulin4All: A Chat with Elizabeth Rowley.

Last week at the International Diabetes Federation’s World Congress in Vancouver, I had a chance to briefly reconnect with Elizabeth Rowley from T1D International.  We talked about the #Insulin4All campaign and the work she and her team are doing to help provide access to people with diabetes around the globe, and how our online community can work together to improve lives across the globe.  Today, she’s sharing some of her thoughts on how we can change the world for PWD.

Thanks for taking the time to talk today, Elizabeth!  I see that the #Insulin4All was popular on World Diabetes Day again this year.  Can you tell me more about that campaign? 

The #insulin4all campaign was started last year by a network of organisations called the Access Alliance that are passionate about access to insulin, diabetes supplies, care, and education for all people with type 1 diabetes.

World Diabetes Day (WDD) started in 1991 in order to “draw attention to issues of paramount importance to the diabetes world” and has since become a huge day in the diabetes community for raising awareness about diabetes. The Access Alliance felt that while WDD is a wonderful thing, the true spirit of the day had been somewhat lost because people around the entire globe with diabetes were often forgotten. We wanted to do something more. So many people living with type 1 diabetes struggle to survive because they cannot afford or access their life-saving insulin, blood glucose strips, or basic healthcare. Others are caught in conflict where there is little humanitarian assistance for people with diabetes.

The aim of the campaign is to unite as a diabetes and global community to show governments, companies, and individuals that we recognize the problems mentioned above. It’s important that we stand together to work towards tangible solutions. The campaign gets bigger each year around World Diabetes Day, but we want everyone to support #insulin4all every day of the year.

How can people participate?

The easiest way to support the campaign is by using the hashtag on social media and spreading the world about the issues. There is a lot of content on the Tumblr page and on the T1International website that you can share to promote and push for #insulin4all. You can also still submit an #insulin4all image on the Tumblr page. All you need to do is take a picture of yourself holding up a piece of paper with #insulin4all written on it, submit it to the campaign page, and share it widely.

How does this campaign bring the mission of insulin for all to a higher level and what is your goal?

The diabetes community is a hugely powerful force and we have seen it unite to push for change from topics such as general diabetes awareness to access to CGMs. Many people with diabetes don’t realise that millions are dying premature death because they can’t access the basics that everyone living with the condition needs to survive. We want people to know that this is happening and we want to unite to change the situation. As with any change, the first step is to understand the problems to find the best solutions. The next step is building a force of advocates to ensure that change happens. That is what this campaign has already begun doing and will continue to do until everyone can live a full life with diabetes.

What makes this campaign different from other insulin access efforts, like the 100 Campaign?

The #insulin4all campaign is somewhat unique in that last year, for example, it had participation from people in over 40 countries around the world. It is very important to share the voices of others, especially those who are facing lack of access to insulin and supplies, and we are so glad to be able to do that through this campaign.

We support the 100 Campaign and love its clear and powerful idea of 100% access to insulin by 2022. Despite the hashtag, #insulin4all’s focus is not only on insulin, but on all of the ‘pieces of the diabetes puzzle’. Even if you have insulin, for example, if you don’t have a syringe to inject it with, or a means to know your blood sugar levels, you’re still in grave danger. We feel strongly that all of these things need to be taken into account when building solutions.

Finally, while we know the #insulin4all campaign is a powerful awareness and advocacy tool, we also know that it alone will not create sustainable change. The annual campaign is part of a wider organisation and movement that is working towards that change. T1International and the other Access Alliance members are taking on a truly collective and collaborative approach because we recognize that we are stronger when we work together. The members of the alliance all work with and are part of diabetes communities around the globe which helps us ensure that we fully understand the many complex issues faced by people with diabetes. *If you want to join the Access Alliance, get in touch with elizabeth@t1international.com*

Do you think the diabetes online community has global reach and can make a truly global difference?

Part of the issue we are bringing to light is that the diabetes online community is probably not global enough. This was certainly one of the motivations we had in setting up the campaign and the Access Alliance in the first place. We have been heartened to find that, as people learn about these issues, many are shocked and stunned – and they want to do something about it. We are confident that #insulin4all will grow the number of people that know about the issues and will therefore grow our power in numbers to speak out against the injustices.

Yes, change is possible, but there are no easy answers or quick fixes when it comes to ensuring everyone around the world can obtain insulin, syringes, test trips, glucometers, and the diabetes education needed to keep them alive. That makes it even more important that we determinedly search for those answers and find appropriate solutions. It’s an ongoing process but it’s a vital one if we are to see the kind of change that is needed for our brothers and sisters with diabetes around the globe.

Is there anything else you’d like to add?

“Life with diabetes is complicated. Access to vital insulin, diabetes supplies and medical care should not be.” If you agree, support #insulin4all today or get in touch with elizabeth@t1international.com if you want to get further involved.

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Guest Post: T1International – Making an Impact Through Art. Guest Post: #Insulin4All Protest at Lilly Guest Post: People with Diabetes are Demonstrating for #insulin4all

Jun 15

50 Comments

Pump Peelz Giveaway!

I’ve been a fan of Pump Peelz for several years, impressed by both their products and their back story.  The company, founded in 2011 by high school sweethearts turned married couple Scott and Emily, aims to “help people with diabetes live with more confidence by turning insecurities associated with diabetic accessories into a form of individual self-expression.”

Can’t argue with that, as the team at Pump Peelz is helping shift our one-size fits all, sometime very drab diabetes devices into personalized and fashionable conversation pieces.  (Because wouldn’t you rather be asked where you got your Dexcom sticker than “Hey, what’s your blood sugar?”)

The Pump Peelz team has offered some skinz as a giveaway here on Six Until Me, which I am very excited about because the cost to enter is minimal, but fun.  Here are the details:

To enter this giveaway, you need to create a diabetes-related haiku (a poem with three lines, the first containing five syllables, the second line containing seven syllables, and the third line back to five syllables) and share it in the comments section or on Twitter (make sure you tag me with @sixuntilme in your Tweet).  Winners will be chosen from a hat by my kid (because I’m low-tech, but trust me, we have a cool hat) and will receive a prize pack from the kind people at Pump Peelz.

I love adding a little flair to the sometimes mind-numbing plainness of diabetes technology.  Here are a few examples of the work they do at Pump Peelz:

For the Dexcom G4 receiver

A skin for your Omnipod

 

And if you’re a Pebble watch user, they’ll throw in one a decorative skin for your Pebble, too!

Once the three winners are selected, I’ll announce those here on SUM on Thursday morning.  The contest is open starting today and will close tomorrow night at midnight EST.  The winners will connect with Scott for their peelz, and for anyone who doesn’t happen to win, 15% off is available to readers using the coupon code “SixUntilMe”.

For more information on the company, you can check out their website or “like” them on Facebook.  (Is it required to put like into quotation marks?”)  And if you’re interested in winning some peelz of your own, be sure to enter the giveaway.  Huge thanks to Pump Peelz for making this giveaway possible, and I am excited to meet them in person at Friends for Life in a few weeks.

Poems don’t have to rhyme.
But if you count syllables,
You might win fun shit.

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