Healthcare loop-de-loop

This blog post serves as a simplified example of the complex headache that is the “healthcare loop-de-loop.”  Ironically, I pledged to write about this topic last year as an offshoot of a blog about diabetes needles.  Today, I again blog about diabetes needles, and how many hoops we must jump through to obtain minimal elements of surviving diabetes.

Many have it more difficult than me, their basic health needs unmet.  Frankly, I have somewhat decent healthcare coverage through my employer, and I have also studied healthcare at the graduate level and understand its nuances.  My point being: Despite all of this, healthcare remains an untamed beast, from the lower administrative levels all the way up.  If I have it “good” and experience this, what about all of those slipping through the cracks merely due to circumstance?

The healthcare loop-de-loop reemerged last week when I went to refill an insulin pen tip prescription, which was promptly denied by my insurer.  (I use two different types of insulin pen tips- the 4 mm BD tips for Lantus and the 8 mm tips for Humalog.  My doctor and I found that the smaller Humalog volume was not being absorbed by my body with the 4 mm tips, so we begrudgingly opted for the larger 8 mm’s.  Your diabetes may vary.)

Allow me to further explain, via Twitter rant:

pen tips twitter1

pen tips twitter2

^ Because of the confusion about the needle length sizes and what had previously been refilled/what needed to be refilled currently, insurance flagged the new prescription as something to deny.  In reality, it was simply a new prescription for a different needle length, granted by my doctor to alleviate some pain from multiple daily injections.

pen tips twitter3

^ I cannot make lengthy phone calls at my job because my job duties would be compromised.  And I need to work for reasons of insurance and paying healthcare bills.  Many of us are in the same boat here.

^^ “This probably should’ve been a blog.”  …Yup, now it is.

pen tips twitter4

^ As maddening as this phone call marathon was, Spare a Rose puts it all in perspective.  Although our healthcare situation is far from ideal in the United States, we are blessed to have what coverage we do have.

 

At first I felt dramatic for live-tweeting my everyday diabetes grievances.  Later, I was pleasantly surprised by how many people validated my feelings, unfortunately having experienced similar irritations of their own.

The resounding theme was: This isn’t right.  Whatsoever.  Amen.

Healthcare is a complicated, multidimensional goliath.  I just so happen to love learning about it.  But when healthcare bites back at me, it is a reminder that I am still a little coffee cup in a big sea of healthcare coffee beans.  Socioeconomic status, insurance coverage, and corporate power are just a few of those beans playing in the healthcare game.  The stakes are high: Quality of health, and, therefore, quality of life, are on the table.

I recognize that my tiny roar may not jostle healthcare mountains.  Currently, there is too much bureaucracy and red tape to allow many of my suggestions to move forward.  But in order to do my part rather than sit back and complain behind the shield of my laptop screen, I must recommend some changes.  If they are heard outside of the confines of my own mind, then it is worth expressing them.

I will start small, with the insulin pen tip example:

“Hi, my name is Ally.  I have been type one diabetic for 25 years.  One day I am confident that there will be a diabetes cure.  We always keep that faith alive.

However, that cure is realistically still far away.  In the meantime, I will require insulin every day in order to survive.  This insulin should be affordable and accessible.  Anything less is morally reprehensible.  The same logic goes for any other life-sustaining medication for any other serious illness.  We can and we must do better.

If a type 1 diabetic is not using an insulin pump, he or she requires insulin syringes or insulin pens (glorified insulin syringes for ease of user experience).  Insulin will be delivered into the body through a needle at the end of the syringe or insulin pen.

Because I require insulin to live, and because I use injections rather than an insulin pump to manage my blood sugar, my skin must be pierced by needles every day until I am cured.  Insurance could make this more bearable by not causing obviously-necessary prescription refills to be a royal pain in the @$$.

The Endo clinic could edit their coding system, so that pen tips can be ordered by millimeters, rather than gauge.  No one likes to say, “Can I refill this 0.99784567325 X 54321 infinity pen tip needle, please?”  Just say 4 mm in your system.  Thumbs up emoji.

Kindhearted pharmacist who empathized with my worries over the insurance-endocrinology clinic ping pong battle deserves a coffee on my dime.  So does insurance representative who patiently worked through the mix-up in order to get my supplies.

Understandably, BD does not want to market their insulin pen tips as “8 mm LARGE, will leave giant bruises; 5 mm semi-large, still may bruise; or 4 mm, smaller but you’re still jabbing yourself with a needle!!”.  However, calling the pen tips “Short (8 mm), Mini (5 mm), and Nano (4 mm)” all indicate “small” in the minds of patients, providers, insurers, and pharmacists.  You can see the root of the miscommunication.

Below is a color-coded chart, created by yours truly, for future reference.  Feel free to disseminate to all parties involved here.  It will lessen monthly Advil bills.

BLUE = 8 mm   “Long needle.  Only intended for use by badasses.”  Lamely called “Short” in real life.


PURPLE = 5 mm  “Medium-length needle.  Sassy.”  Lamely called “Mini” in real life.

GREEN = 4 mm  “Small.  Dainty needle for dainty pain.”  Lamely called “Nano” in real life.

ALLY = happy that you listened

Happy Ally

Thanks for hearing me out.  Until the next prescription refill…

XOXO,

Ally”

 

 

 

 

 

 

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Name Game

My diabetes-related Facebook account has been deactivated for awhile now.  It all started with Facebook asking me for government-issued ID to ensure that Ally VeryLight NoSugar was my legal name.

Well, no surprise here: It’s not.

But does that make the name any less meaningful?

After multiple back-and-forth emails explaining myself and my name to Facebook, they bureaucratically decided that my personal account should become a fan page.  Too bad I already had a fan page here, and now my personal account was exiled by Facebook.

When I established my blog and its related Facebook account, I was slowly and painfully succumbing to a lackluster amount of insulin being delivered into my body due to defective insulin pump products.  (All is well now thanks to some creative problem-solving.)

I went online to search for technical answers, and I ended up finding so much more than I ever could have imagined: peer support, courage to return to multiple daily injections and to feel better, a purpose in advocacy.  But when I created Very Light, No Sugar, I had legitimate concerns about employment discrimination due to my health status.  I feared that no current or future employers would want a woman with a defective insulin pump representing their offices.

So, I wrote under my nickname, Ally, and did not think much of it until the Facebook fiasco.  Allison was sidelined to the couch, fighting ketones and trying to solve biomedical infusion set engineering defects on her own.  Ally was the empowered diabetes advocate, enjoying the companionship of a newfound online community and writing for a greater cause.  Although I am both of these entities in one authentic being, at the time I preferred the life Ally was living, the act of using my own suffering to invoke goodness somehow.

My issue with Facebook is the discriminatory nature of its names policy.  I am not the first ePatient advocate, and I imagine I will not be the last, to be singled out by Facebook.  While Facebook has every right to enforce a strict names policy, the problem is that they do not do so universally.  My friend can have an account for his Chihuahua, Scruffy the Dog, yet ePatients advancing charitable causes are somehow pinpointed as “sketchy” by Facebook.  Far from it; ePatients are some of the bravest and most selfless people on earth.

Safety is also an issue on Facebook.  When my friend uprooted her life to escape domestic violence, she wanted to keep in touch with loved ones without her abuser knowing her whereabouts.  Logically, she used a Facebook pseudonym to maintain communication with us from afar.

Additionally of note, I was uncomfortable uploading my government identification material to Facebook’s site for verification.  My personal information was compromised in an HR data breach at my office last year, and those feelings of violation and “what ifs” are still raw today.  I did not feel the need to further justify my name to Facebook, so I chose to take a break from it.

No matter the reason, if Facebook truly cares about community as they claim, these circumstances should be incorporated into their names policy in a supportive, understanding manner.

Although my blog does not make the world go ’round, I do believe that a good name helps a good cause.  Just as I remembered the website sixuntilme.com for its creative brand and background long before I became a blogger myself, my hope was that Very Light, No Sugar would stick in the minds of a few people who needed to hear my story.  If the name allowed me to give back to the diabetes world in my own small way, then it carried a reputation I could be proud of.

Despite all of this, the break from Facebook has mostly been refreshing.  Although I want to keep up with the diabetes community, my Facebook newsfeed had been overwhelmed with scary diabetes stories, quarrels despite all of us being in this fight together, and surely my own “endearing” moments of annoyingness.  Frankly, I needed to detox from triggers contributing to diabetes burnout.

I missed little things like easily messaging my friends to catch up, specific advocacy groups, or discovering links to new, enjoyable blog posts.  And, hey- it’s Facebook.  Like it or not, (almost) everybody’s using it.

Out of principle, I am back under a slightly different ePatient pseudonym.  I believe that ePatients should be given the due respect that others receive.  This is my symbolic way of standing up to a social media behemoth.

My name is Allison.  I also go by my nickname, Ally.  I have type 1 diabetes.  I like coffee.  A lot.

Call me whatever you want (within reason), but I will never stop fighting for a diabetes cure.

What more could Facebook need to know, anyway?

 

 

 

 

 

Spare.

Spare.

Dictionary.com defines the verb as “to give or lend, as from a supply, especially without inconvenience or loss.”

At that rate, why wouldn’t we spare roses this February, and perhaps all year long?

The premise is simple: click here, donate $5- the cost of a rose you may normally give to a loved one on Valentine’s Day (or, set up additional monthly donations if you can!), and save a child by providing life-sustaining insulin through your donation.

If you are reading this blog post from a cell phone or a computer screen, chances are you have $5.00 to spare.  If you do not, that is okay, too; instead, please help to spread the word about #sparearose.

What is $5.00 worth?

-one medium coffee and one donut from your local coffee shop

-half of a movie ticket  (What use is that?!)

-crappy red wine and a headache you don’t need, anyway

-an overpriced bottle of water at a sporting event

 

*****-And oh, yeah, A LIFE!!!!!!!!

 

Close your eyes and think of a time when you did not receive a viable amount of insulin for a few hours.  We have all been there: a kinked insulin pump cannula, diabetic ketoacidosis (DKA) during diagnosis or severe illness, or whatever the case may have been.  We have felt the heartburn and nausea of high ketones, the unquenchable thirst, and the longing for comfort that takes too long to get there.

For most of us, those days represent acute instances of distress.  Scary, yes.  Life-threatening, sometimes.  But if we are reading this blog post today, we somehow escaped diabetes’ wrath and are feeling better thanks to the insulin taking up all of the shelf space in our refrigerators.

Without insulin, kids in developing countries know that type of suffering intimately.  Those of us who are more fortunate cannot lay our heads on our pillows at night and be okay with that.  We understand diabetic ketoacidosis.  We have a moral obligation to curtail DKA as best we can before it senselessly takes any more lives.

If my words come off too harsh here- well, it is a risk I am willing to take.  If our moral obligation leaves us momentarily uncomfortable in our realization of its truth, so be it.  These kids are more than uncomfortable as they await insulin that they should have to begin with.  We owe it to them to do the right thing.

If you can, please spare a rose this February.  Through the simple act of sparing, we can dry so many tears.

Thank you

spare a rose 2015