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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.

  *   *   *

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.

 

 

In Sickness and in Health: My Partner Has Diabetes.

A week or two ago, I received a message from a reader asking about the influence diabetes has on my marriage.  I took to Facebook to get some broader feedback, but the question forced me to drop into the weeds to see how my diabetes touches my marriage.  This will be part one of a two part post, with today’s focus on the people in a relationship who are in a relationship with someone who has diabetes.  Read yesterday’s post here.

As the person in my marriage who hosts diabetes, I struggle to see things from the other side.  Which is why I’m really grateful for the partners of PWD who offered their take on diabetes and marriage, because it’s some great insight on what diabetes looks like “from the other side.”  Whether diabetes was part of the family before the wedding or came into effect after the vows, diabetes can add some intensity to the relationship equation.

Brian “married into diabetes” and shared some thoughts with me. “[My wife] Laura was diagnosed really early in our dating relationship, so it’s something we learned about and have always dealt with together. It certainly tested and proved our bond in the beginning. Now that we’ve been married (almost) six years, it’s simply a part of our lives.  I’d say the biggest struggle for me is that we generally are partners in everything we do. But with diabetes, no matter how supportive I am and how much I try to help, we’re never really partners because it is always hers to deal with. No matter how much we confront it together, she is always facing it alone.”

A female friend who wanted to remain anonymous said, “My husband has had T1D for 25 years and we’ve been married for 9. Diabetes doesn’t necessarily affect our marriage in a tangible way. It’s an underlying current. It’s little things like having to stop for juice 10 minutes into a family road trip, wondering if he’s cranky because he had a bad day or if he’s high or low, or whether the insulin pen he left on the kitchen counter is the long-lasting one or the one he should have taken to work. It’s developing the ability to know if he’s low simply by the look in his eyes. It’s understanding that he always gets low when he mows the lawn. Other than the absolute horror show of having to deal with our insurance, I feel like we do a pretty good job of not letting it affect our everyday life. But we also try to understand that, no matter what, it affects his everyday life.”

Meredith is married to Harry (who has T1D), and they have a daughter close to Birdy’s age.  Meredith said, “It makes me worry. Not just worry about the future, but everyday things. When Harry goes on a business trip or I am away from him at night I worry about low blood sugar. He doesn’t always hear his alarms at night and so I worry about what could happen when I’m not there. I also worry when he works out (which you know is often). If I text and he doesn’t answer or if he’s gone longer then I think he should be my mind almost always goes to BS problems. I still have the regular spouse worries, like normal accidents, but his diabetes adds to that and I’m already a worrier. I think it drives him crazy.”

I’ve thought about this before, the whole “what if it was Chris and not me who had diabetes.”  I know I would nag the absolute shit out of him and would also worry a lot. That’s my role (in life?) – to worry.  And if someone other than me was living with diabetes, I’d worry incessantly about them.  Preferring to have diabetes myself isn’t heroic, but selfish because I’d worry myself into a stupor if it were anyone other than me.

Another woman, who asked to post her comments anonymously, refers to her husband’s diabetes as the third wheel. “We often call [his] diabetes the third wheel in our marriage. It’s always there and challenges our relationship often. [My husband] has a very different demeanor when he’s high, which requires a lot of my patience and to be honest- with two kids under 4, I don’t have any extra patience. So I’m not as kind and forgiving as I should be.”

Sometimes both partners have diabetes, which can add an extra layer of both understanding and of stress.  Kelley was married to someone with type 1 diabetes, and the influence on their relationship was not entirely positive.  She said, “Type 1 very much strained my marriage of 11 years to another type 1. He had hypoglycemia induced seizures along with hypo unawareness. He never wanted to wear his sensor, and it got to the point where I would refuse to leave our sons with him alone for long periods of time. I made sure both of us had insulin and supplies, I made sure our blood work was done, that alcohol wipes and tape were on the shelf where he liked them, and that there were always 2 glucagon pens in the house. I was the one that would argue with him and force feed him glucose gel or tabs, and the one that called 911 if things went too far south for my nursing skills to handle.”

“It caused a lot of resentment and frustration, and made me feel thankful for my own diabetes being easier to manage,” she continued.  “Now that we are divorced, our oldest son has taken on some of the burdens I used to shoulder, and has had a cell phone since the age of 7 to help him with all of this.”

When I was growing up, I didn’t know many other people with diabetes, but in the last 12 years, I’ve made up for lost time.  Which  means I have a lot of “diabetes friends,” which in turn produces a lot of love and a lot of worry.  I’ve never dated someone else with diabetes, but I’ve wondered what that would be like.

Kelley has strong opinions about this.  “I told myself I would never date or marry another type 1 as our marriage began to dissolve. And I have stuck to this. My new partner follows my Dexcom, makes sure I have plenty of insulin in the fridge and fruit snacks and grape glucose tabs in the night stand. I never realized how much I loved being taken care of. I have experienced both ends of the spectrum.”

But it can go either way, as with anything.  By contrast, my friends Chris and Dayle both have type 1, they are married, and they actually met through the diabetes community.  Diabetes is woven around different parts of their relationship, as Chris recounted.

“So do we talk about the dresser devoted exclusively to diabetes supplies?” Chris shared on my Facebook thread.  “The conversations about insurance? The cupcakes? The races to see who finishes their TSA patdowns first? The fact that juice boxes made it into our vows? I think we kinda stacked the deck with both of us having diabetes”

Dayle has a similar outlook, through a lens of humor.  “When Chris and I first met, I was actually dating a different pwd. But he was weird in that he actually changed his lancet for every. Single. BG test. So Christopher was a welcome change.”

Reading through people’s responses really opened my eyes to what it might be like to have diabetes on the other side of my marriage, and made me grateful for the people who live with and love someone with diabetes.  I know that when I’m frustrated with my own diabetes, it’s the steady and calming influence of my husband who keeps me from throwing my meter across the room and watching it shatter into a thousand pieces.

Which is a useful skill, since cats and kids alike might try to eat the little broken meter pieces.

Thank you to everyone who decided to share their thoughts on diabetes and marriage. Your perspectives are valued, appreciated, and comforting.

 

In Sickness and in Health: I Have Diabetes.

A week or two ago, I received a message from a reader asking about the influence diabetes has on my marriage.  I took to Facebook to get some broader feedback, but the question forced me to drop into the weeds to see how my diabetes touches my marriage.  This will be part one of a two part post, with today’s focus on the people in a relationship who have diabetes.

How does diabetes affect marriage?

That’s a big question.

Like many things in a marriage, diabetes is a big deal some days, not on others.  Ebb and flow and all that crap.  But the main takeaway is that once Chris and I were married, diabetes became “his,” too.  That is a strange paradigm shift because diabetes was mine for many years.

Diabetes put a noted strain on my pregnancies, and this became a family issue.  The location and number of my medical specialists and the frequent visits to them became a priority like no other.  Worries about my growing children were directly tied to my diabetes management, and this was a concern that Chris and I both shared.  That, and I rode my blood sugars low a lot of the time during my pregnancies, which caused extra worry for Chris (like the time he came home when I was pregnant with Birdy, sitting on a stool and eating a fistful of glucose tabs, announcing through a mouthful that I was 29 mg/dL).

And what I do for work orbits pretty tightly around diabetes, as well.  Most of my writing gigs are diabetes-related, as are the majority of my speaking engagements.  This makes diabetes come up in oddly detached ways during conversations with my husband, as though I work at a bank – a bankreas – when in fact my job and my disease are tightly intertwined.

Holly saw my request on Facebook for diabetes and marriage feedback and offered her take.  “It took me awhile to realize that my diabetes was no longer my own anymore. At first, I didn’t want my husband to help or know much about it because I thought of it as just my disease. But it’s not. It’s just as much his. He play a less significant role as far as managing it, but we are here to take care of each other and that involves him taking of my diabetes. He brings me juice in the middle of the night, lets me sit and zone out during a low while he’s taking care of the girls, and is always understanding when diabetes affects my mood (I refuse to admit it but he gracefully doesn’t mention it).”

Paige is not married, but in a long-term committed relationship, and had this to say: “Diabetes is the trouble maker in my partnership. He chose me, Henry Jekyll, but couldn’t know up front that he’d also get out-of-range Edward Hyde. Because of diabetes, I am a living dichotomy: Both the person he loves AND a person he doesn’t recognize. On the other hand, it gives us a common passion and common problem to solve. So, it’s trouble. But trouble has it’s role in every relationship.”

Some couples keep diabetes at arm’s length.  In my house, diabetes is not a big topic of discussion.  It rolls around on the peripheral.  Yes, it absolutely comes up at times when I have to remind Chris that I run out of energy at times, or when I vent about feeling burnt out and overwhelmed, or when we talk about medical insurance coverage.  But I am definitely not the type to hand over my management for a day, and my husband does not my site changes or ask what my blood sugar is.  I am not comfortable giving that much control to someone else, preferring to keep diabetes details to myself unless they need to be shared.  (I share CGM data but he’s only notified for lows.  We talked about it.)

“Aged 25 and married 10 months later, [diabetes has] not affected marriage in any way at all,” shared Chris, online known as Grumpy Pumper. “My wife plays zero role in my management. She knew me well enough to know I do everything on my own and I’d never let it impact her or the kids when we had them. I’m away all week, every week now for almost a year with work and I don’t share CGM data with her. I don’t feel the need to. Basically I’m a bit of a cave man, I guess.”

The hands-off theme rang true for Scott, as well.  Scott said, “I appreciate that my wife is pretty hands-off when it comes to diabetes in our marriage. I pretty much take care of all of the predictable/scheduled stuff (doctor appointments, prescriptions, bills) — I even do the majority of the cooking (though D is not the reason for that). Even for unexpected stuff (lows), I’m mostly self sufficient – treating it myself, but she’ll be patient if I need time before heading out the door to do something. She will check in to be sure I’m OK and will offer help when needed. Rarely do I ask for assistance.  But overall, she doesn’t involve herself in it on a daily (or even weekly) basis — and I prefer it that way. But I know she’s there for me when I do need her.”

Living with a chronic illness can add a lot of perspective to a relationship, and plenty of the feedback I received was about how diabetes changes certain parts of a marriage for the better, and for the stressful.

Karen is married to someone who does not have diabetes, but whose father did have type 1.  “I believe diabetes adds depth and dimension to a marriage. I had T1D for 21 years and was married for 10 years before diagnosis… and I had my two kids before it came along. The strange part is that my husbands father had T1D, so my diagnosis brought with it panic and fear as my husband remembered all the emergencies and challenges of living with T1D in the 50’s and 60’s. We actually did some marriage counseling around this that helped tremendously.”

Sarah has diabetes and her husband does not, but says that diabetes has brought focus on some nice, little things. “It’s made me appreciate my husband as my life partner. It’s the little things … whether always keeping a 20oz regular coke in the fridge for lows, or buying Diet Coke in a can (the go to drink when my blood sugar is high)… or helping our son with whatever needs to be done while I watch from the sidelines as I treat a low. He also runs rough shot on the little man when my blood sugar is high and I can’t stand to be touched.”

Kay has type 1 diabetes and likes to do the worm (stay with me – it’s relevant). “I try to live my life with diabetes in the background and I would say that it’s the same in our marriage. For example, at work everyone knows I have diabetes, but they also know that there are a million other things about me. Like I’m training for a marathon later this month, I like to do the worm when I’ve had a little too much to drink, and I have less than a year left of NP school. Again, they’re able to help if I need anything, but it’s never the focus. I would definitely say it’s the same in our marriage. I think the answers you get to this will vary a lot based on personality and how public people are with their diabetes and sharing parts of their life in general. I look at diabetes as part of my life and just try deal with it without getting too worked up over anything, 99% of the time, while others share high or low blood sugars, Dexcom pictures, and various other diabetes posts.”

And I’ll chime back in as an over-sharer (hi, diabetes blog) online but more private about diabetes in the general course of my life.  I think the diabetes community is where I process the majority of my diabetes emotions, with the most personal discussions still happening at home.

But sometimes discussions don’t happen, and I think it’s because diabetes can be scary to acknowledge in full.  A reader sent in an anonymous perspective about how her husband responds to diabetes, and it really resonated for me:  “He thinks I don’t see it, but in the panicked fleeting glances between eye blinks while I’m checking my blood sugar or drawing up insulin or just talking about a possible complication down the road, I can see his brain doing the math of how many years we have left together and how many he may have to spend alone.”

“Having a partner has shown me how much I have shouldered alone for so long,” shared Fatima, who had type 1.   “With any single instance of help, of which my husband provides plenty, I find myself taking a breath of relief that I’m not doing this alone anymore. It’s both extremely heavy on my heart in recognizing how devastating diabetes is, and equally uplifting to my spirit to know I have someone who cares and worries for me more than I think I worry for myself. My only worry ends up being that my husband might feel more helpless than I do when things get difficult – and that is hard to watch, but demonstrates love in a way that I don’t think living without a health condition could.”

I agree with Fatima on that one.  Despite the heaviness that diabetes can bring, it puts even the most trying moments into a very healthy perspective.  It’s not always easy to manage and I’m terrible at being consistently upbeat about life with this disease, but as far as its influence on my marriage, it is a drumbeat in the background, louder on some days, barely heard on others, but at least its rhythm is something you can still dance to.

Tune in tomorrow for perspectives on diabetes and marriage from people who married into diabetes.  And thank you to everyone who shared their thoughts.  <3

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’

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