Thursday, August 25, 2016

Slate.Com : With Diabetes, "Even" Little Words Matter

This post started out as a post about the disgusting Mylan epi-pen price increase and how it mirrors the insulin prices increases, but then it turned into an article about’s diabetes headline from yesterday, because the word "even" in the article title rubs me the wrong way.

I’m still working on the epi-pen article - and neither post is an Insulin verses Epi-pen article. Nope - both diseases are life threatening, both medications save lives and both price increases are appalling and I'm enraged at the eli pen price increase. 
Today’s post is about words - specifically the word “EVEN.” 
And how even little words can negate a price increase and add to diabetes stigma. 
Yesterday, ran an article with the headline: Good Lord, Even The Price of Insulin Is Skyrocketing.

Yep Slate, this is nothing new. 
The price of insulin has been skyrocketing for years -I now pay more for insulin than I did back in 1997 and more than my parents did when I was diagnosed way back in 1977. 
 Insulin is also a life saving drug, but nobody except those living with diabetes seems to care about the continual price increases. 

The Diabetes Online Community has been writing about about the high cost of diabetes for years - including the ridiculousness that is the ever increasing cost of insulins. 
Check out HERE, HERE, and HERE for a small sample of DOC voices on the subject.
Recently, the DOC has rallied behind #diabetesaccessmatters, because you bet your sweet ass it does.

Thank you, thank-you, thank-you  for featuring the insulin price increases in your publication. 
But,and of course there's a but. 
BUT what's with using the word "even" in your title? 
Using the word “even” in your title re: skyrocketing insulin prices detracts from the impact that those stratospheric price increases have on every single person living with diabetes who struggle to pay those skyrocketing prices in order to stay alive. 
Sidebar: You might say semantics, but not just my POV, btw. 

The word “even” lessens the struggle that millions of people living with diabetes are going through daily in order to pay for the insulin they/we require order to live. 
Diabetes is not cheap - and today it's more expensive than ever.

Wuestion: Would you have used the word “even,” to describe price increases for diseases such as crohn’s, life threatening allergies, or cancers? 
Nope, I don’t believe you would, so why is OK to use that word and in that context when describing the price increase of drugs for a group of diseases (type 1 diabetes, type 1.5, type 2 diabetes,) that millions and millions of people live with?

Not OK and here’s why. 
  1. By using the word “even,” you’re subconsciously adding to diabetes shaming and adding to the stigma associated with diabetes
Being diagnosed with diabetes is often perceived as a character flaw, so maybe for some people reading your article, it might be considered OK for those of us who need insulin to stay alive, to pay a little more. 
It’s not OK.
Diabetes is not a character flaw - diabetes is hard fucking work and I haven’t had a vacation from my t1 diabetes in well over 3 decades. 
I’ve lived with diabetes longer than I haven't and diabetes accompanied me from third grade until I graduated from college and every day since. 
Diabetes was with me as I watched my favorite sister get married, went with me on my first date, stumble along side me through my first sexual experience and every one since. 
Diabetes has been my traveling companion to a dozen countries and at least 15 states. 

 Diabetes has made the move with me to different states; stood by me as I buried both my parents, discovered the Diabetes Online Community, and sat in the third row with me when my niece made her Broadway debut.
Type 1 Diabetes took the life of my older sister Debbie and broke my parents heart in the process. 
Diabetes has made me feel guilty and diabetes has me saying I'm sorry, even when I am anything but. 
Diabetes been the longest relationship I’ve ever had - braking up with diabetes is not an option at this time because there is no cure for my type 1 diabetes. 

Don’t even get me started on Diabetes Burnout!

Speaking of cure, the use of the word “even,” makes my disease seem less cure worthy and in actually, has the potential to lessen funds raised to find the D cure. 

But back to diabetes day to day - and the shear cost of living with diabetes. 
I know people with diabetes (type 1, t1.5, and type 2,) who can’t afford the cost of their insulin, or other medications, test strips, and diabetes durable medical equipment (insulin pumps, CGMs,) and play Russian roulette with their health every month because they’ve either run out of their meds/supplies before their prescriptions are due to be filled.
Or worse, they don’t have insurance and go without out because they’ve run out of money.  
Unfortunately, diabetes is not the same disease every day - some days you require more insulin, some days you require less. Sometimes you need to check your blood sugars 10 times a day, other times 7 will suffice. 
But if you live with diabetes, you're lucky if your insurance will pay for 5 test strips a day. And if you have diabetes and are on medicare - you only get 3 test strips covered per day. 
Did I mention that test strips are the litmus tests that people with diabetes use (as well as CGMS - but that a whole other insurance ball of wax for another post,) use to monitor their blood sugars and measure out their insulin. 
Insulin can kill if you admisister too much or too little - so YES, checking blood sugar is CRUCIAL AND EXPENSIVE.
Speaking of insurance - people with diabetes  (PEOPLE WITH ANY ILLNESS,) spend more time arguing with their insurance company over denials, mistakes, and fighting for lifesaving medications and procedures. 

So Slate, when you use the word “even” in your title, you aren’t doing PWD (people with diabetes,) a favor- because the majority of the public already think it’s our fault we have diabetes.  
Nobody, no matter the diabetes type, deserves to be treated any less than with respect because of their diabetes status. 

If you want more info regarding what it’s really like to live with diabetes, ask the thousands of people in the Diabetes Online Community who will be willing to share what it’s really like to live with diabetes - step by step, deductible by deductible, crazy ass high co-pay by co-pay. 

Lastly Slate, you’re a HUGE publication and online presence - and a great one.
I read your site daily and I learn and laugh from your posts. 
 Your words, even small ones have power, so please use them wisely. 


Gabrielle said...

Preach Kelly!

The word even implies that is fine and acceptable that insulin is very expensive. It is deeply not fine. Word choice matters!

Rick Phillips said...

It reminds me of the comment of Paul Krugman a few months ago. Yeah I am adding this one to my list as well.