Skip to content

Posts tagged ‘diabetes’

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.

  *   *   *

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.

  *   *   *

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.

 

 

Free Shower.

(to the tune of Tom Petty and the Heartbreakers’ Free Fallin’)

He’s a good pump, does his job well
Loves priming and bolusing too.
He’s a good pump, crazy ‘bout islets
Gives insulin when those islets don’t come through.

It’s a long week being my Dex sensor
There’s adhesive workin’ while I play
And I’m a happy girl cause I don’t even miss them
I’m a happy girl on site change day

And I’m free, free showerin’
Yeah I’m free, free showerin’

All devices are sitting on my counter
Going nowhere until I put them on my bod.
And all the good pumps are taking their short leave
And all the good sensors are still in plastic sleeves

‘Cause I’m free, free showerin’
Yeah I’m free, free showerin’

Free showerin’, now I’m free showerin’
Now I’m free showerin’, now I’m free showerin’

I’m gonna dry off and refill my cartridge
I’m gonna peel back adhesive tapey rings
I’m gonna free shower but then when it’s over
I’ll reconnect with these live-saving things.

For now I’m free, free showerin’
Yeah I’m free, free showerin’

Yeah I’m free, free showerin’
Oh! Free showerin’
Now I’m free
Oh!
Free showerin’

What is it like to take insulin?

This was a search term that brought someone over to SixUntilMe, and I realized they probably didn’t find their answer easily.  I don’t have a pile of “How To” and “Five Ways You Can …” sort of articles, despite the Internet trend in that direction.  (Closest I’ve come is the one about the ten best cocktails for people with diabetes.)  But I wanted to address it.  So …

What’s it like to take insulin?

The act of inserting the needle is one thing.  Years ago, I drew insulin into a syringe from a vial, tapping out the bubbles and then pressing the needle tip to my skin. Thirty years ago, my style was to press the needle through my skin in a slow, deliberate sort of manner, using the speed to gauge whether or not the injection site would hurt (and if it felt uncomfortable at first press, I’d move to a different site).  I still do it this way now, whether it’s a syringe, an insulin pen, or the infusion set for my insulin pump.  Controlling the pain is important to me.  It’s on the short list of things I can control.

The kind of insulin has changed for me throughout the years, as well.  Upon diagnosis in 1986, I took Regular and NPH, which were pretty sluggish and forced me to plan my meals around my morning insulin injection. I’ve also used Lente, UltraLente, Lantus, Levemir, Tresiba, Humalog, and Novolog.  NPH used to be rolled in my mother’s hands so it would mix properly before injection.  Lantus burned when I took it, and the burn would spread under the injection site for a second or two.  I’m currently using Humalog in my pump.  It claims to start working in 15 minutes but my body seems to make that timeline 35 min.

Insulin is serious stuff.  It lowers blood sugars.  Not enough keeps blood glucose levels higher than is safe, subjecting my body to the abuses of elevated sugars.  Too much insulin throws me into a “hypoglycemic event.”  I’ve had a number of low blood sugar episodes that have scared me.  “Scared me” isn’t really a fair description, either, because in some of those moments, I wondered if I was going to die.  Not being dramatic, but more pragmatic.  Will I be able to consume enough glucose to keep me from passing out, going into a coma, dying?  These thoughts sometimes go through my mind like a ticker tape when I’m severely hypoglycemic.

Physically, aside from putting a needle into my body, insulin is crucial to my body’s metabolic processes.  I’d be dead without it.  Dead.  It keeps my body from starving to death.  Acknowledging that is crazy, and gives way to the other side of taking insulin:  the headspace side.

Acknowledging that my ability to stay alive relies on the contents of a small, glass vial is humbling as hell.  The fact that so many people with diabetes cannot afford or access insulin and they die without it is beyond humbling.  Every time I finish a bottle of insulin, I make sure to grab every last bit, waiting for any bubbles to burst and grabbing them when they go liquid.  I do not waste insulin.  A bottle broken against bathroom tile is mourned.  And as the price of insulin continues to climb, my panic response does as well because not having insulin is not an option if I want to continue to exist.

That’s some crazy shit to think about as I tap the bubbles from a syringe.

So what’s it like to take insulin?  Humbling, if I think about how lucky I am to be alive after Banting and Best worked their magic.

But the weird thing is, on most days, I don’t think about it.  This hormone I’d die without, this item in my fridge that’s worth more than my entire house in total, it’s not something I deliberate or celebrate every day.  I just take it, ignoring any quick pinch on my skin and moving on.

… and that right there illustrates how lucky I am.  Which is why I’m ending this post with a call to donate to Life for a Child through IDF.  Nothing like sparing a rose a few months early.

Magic Kingdom, Magic Bathrooms.

“Is that an insulin pump?”

I was standing outside of the stall in a bathroom in Tomorrowland, waiting for my daughter to wash her hands.

“Yes, on my arm here?  Yes, it is.”  I pointed to the infusion set on my right arm, the tubing snaking back up my sleeve into my dress.

“Oh!”  The lady smiled really big, relieved.  “Do you mind if I show my son when he comes out of the stall?  He’s five – was diagnosed with type 1 diabetes when he was three.”

“Of course!”

The bathroom continued being a bathroom for a minute more, then her son came out.

“Henry, this lady is wearing an insulin pump.  Remember I told you about those?  Look, it goes right into her arm here!”

His little face was so little, just a few years older than my own son, a few years younger than my daughter.

“Hi, Henry.  I’m Kerri.  I was diagnosed with diabetes when I was seven.  This insulin pump is what I use instead of shots to take my insulin.  Want to see?”

He nodded.

“This is the little spot where the insulin goes in, and this tube connects here,” I pulled my pump out so he could see it.  “And the insulin is stored in here.”

Henry’s mom smiled.  “I was telling you about this!”  She turned to me.  “I was telling him about this.”

“If you touch this screen, it lights up.  Want to try it?”

His face broke into a grin.  I showed him how to tap the 1 … 2 … 3 buttons on my t:slim X2 to wake it up.  “If I wanted to take some insulin to have a snack, I’d press this button, tell it what to give me, and then I’d be all set!”

I turned to his mom.  “Are you guys here for the conference?”

She looked confused.  “What conference?”

Showing her the green bracelet on my arm, I explained that we had just spent the week at Friends for Life, hanging out with friends and making diabetes feel commonplace for a few days.  “So many families go.  Some parents bring their kids who have diabetes.  And in my case, I’m the one with diabetes, so I bring my kid to meet other kids of parents with diabetes.”

(This whole conversation is taking place while our kids are washing their hands and playing with the hand dryers.)

Before the next stall could flush, we’d figured out that we lived close-ish to one another, and that we had some common stomping grounds.  At my urging, Henry’s mom opened my phone and started an email to herself.

“I’ll send you an email after we leave the park with some details on the conference.  And if you have any questions about insulin pumps or connecting Henry with other kids who have diabetes, or anything at all about anything, I’d be so happy to connect,” I said.

All hands washed, we shook them, laughing about the awkwardness of meeting in a bathroom.  And then I sent my now-new favorite email intro ever, opening with, “We just met in the bathroom at Magic Kingdom (great way to start an email, right?) and I wanted to email you right away.

A few days ago, I heard from Maggie.  Our bathroom connection has come full circle.  Advocacy can happen anywhere: in a conference hall, on an airplane, in the grocery store.  Even in a bathroom at Disney World, our community is flush with connection and possibility.

Recipe for FFL.

Want to make Friends for Life?  Here’s how:

Ingredients:

1 large Coronado Spring
Millions of humidity molecules
3,000 family members who live with diabetes
1,000 (estimated) Mickey Mouse waffles
22 bowls of glucose tabs
Dozens of supportive siblings
Hundreds of orange bracelets
Hundreds of green bracelets
Several buffet tables of carb-counted food
Add sports central, support sessions, and learning workshops to your taste

Directions:

Take your humidity molecules and mix with the Coronado Spring.  They will combine to become as hot as possible.  Move into your hotel room and be thankful for the conditioned air.

Assess your pancreas. Salute your pancreas if it functions properly and don your orange bracelet with pride. If your pancreas is a thumbs down as far as insulin production goes, put on your green bracelet with pride as you are not alone with diabetes.

Attend focus groups and meet with companies who aim to make a difference in the lives of people with diabetes.  Between meetings, visit the pool and go down the waterslide, mingle with CWD staff and friends at Pepper Market, and give a happy wave to strangers-who-are-not-strangers.

Have fun.  Enjoy healthy meal options that are carb counted (and gluten-free if that’s your jam).  Dance with the DJ at the banquet.  Meet the Disney characters at breakfast.  Get a retinal screening.  Learn about things like diabetes and exercise, and going to college with type 1 diabetes, and new technology options, and parenting and pregnancy.  Collect at the social spots in the evenings and talk about LIFE and some diabetes but not entirely diabetes.

Be thankful that companies and sponsors and donors have come together to make an event like Friends for Life possible.  Thank them for their financial contributions and support.  Thank the fellows.  Thank the scholarship programs.  Thank the staff for their tireless efforts.  Thank your friends and families for being part of this experience with you.

Rinse and repeat for several days, until your heart is full and your voice is gone and the corners of your mouth feel stretched to the brink from smiling.

Disclosure:  I could not be prouder to be a member of this organization as a board member, part of the adults with type 1 diabetes faculty, and a grateful PWD attendee.  My travel and lodging are covered by the organization, but my opinions and dedication to the cause are my own.  Huge thanks to the staff, supporters, and sponsors who make Friends for Life possible.  

If you’d like to make a donation to support CWD, please click here.

 

Follow

Get every new post delivered to your Inbox

Join other followers