Coffee Date #1: Laura Marston + Insulin

Many thanks to Laura Marston for joining us as the inaugural guest on Very Light, No Sugar’s Coffee Dates interview series.  With a template similar to the brief “getting to know you” interviews in pop culture magazines, VLNS’ Coffee Dates provides a snapshot of important people, entities, and topics in the healthcare world.

 

A:  I just have to ask: How badass is it to be a video game lawyer?

L:  It’s an absolute dream job. I work alongside the most brilliant minds in the gaming industry (*cough* Todd Howard *cough*) and work for a truly incredible company. Plus, after spending ten years working for large law firms as an IP trial attorney, I’m just happy I don’t have to wear a suit. 🙂

 

A:  You have elevated the insulin access and affordability causes through Twitter and interviews with the likes of the Washington Post. Even President Obama has noticed your humble yet lifesaving advocacy! What would you recommend to individuals looking to get more involved, whether at the local level or beyond?

L:  Start small. Start anywhere. TELL YOUR STORY because it’s important and it matters. You may be surprised who relates (in my case, it happened to be Senator Bernie Sanders!) Passion and the truth will trump greed and lies every. single. time. And our passion is endless because our lives literally depend on this issue.

 

A:  If you were to describe the affordable insulin cause in 140 characters (give or take- humor me here!) to someone who does not know much about diabetes, what would you highlight? 

L:  The patent for insulin was sold in 1921 for $3. Almost 100 years later, a month’s supply of insulin costs over $1,000. The price of insulin affects not just the un- or underinsured, but all of us. Our country was founded upon the individual rights to life and liberty. All humans need insulin to live, and injections of insulin are necessary to sustain life for T1Ds. Thus, access to insulin is a basic, fundamental human right.

 

A:  What’s up next for 2017? 

L:  Look for more localized advocacy work, as well as a federal advocacy initiative highlighting the importance of the ACA in the wake of skyrocketing insulin prices. Anyone interested in getting involved in our US-specific insulin advocacy efforts should contact me at laura.marston@gmail.com.

 

A:  Cream in your coffee?

L:  Cream + about a million Splenda. 🙂

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+1

25 years on a Lilly medal + 1 test strip representing another year = 26th diaversary

Last year I had many words, and blog followers reported that they kept Kleenex in business while reading.

This year, only a few terms come to mind:

Anger.  Insulin.  #weneedacure.  Emotional Health.

If diabetes takes a backseat in life, it is not for lack of trying.  Rather, it is for resetting and rising again.

Reese has taught me to appreciate the simple joys of reliability, and love.

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Here’s to more +1’s.

 

We need a cure.

 

 

 

 

 

 

2.

My 2-year-return-to-insulin-shots-anniversary came and went a few weeks ago.  The anticlimactic day was all the validation I needed to know that this was the right choice for me.  I no longer count down the days, weeks, or months on shots; they are my new normal until I switch things up again or diabetes is cured.

People probably wonder why I still harp on my defective insulin pump saga, and the truth of the matter is that one can talk as much or as little about trauma as one sees fit.  Medical trauma is particularly cruel; our already-limited “control” further fades away as our cells cry out for insulin.  I continue to harp on this because the wounds are still fresh, however many years after the triage.  Yet the bandages of an engaged healthcare team have eased the pain, and I finally feel better.

Two years ago I feared that I would die of ketoacidosis while sleeping on my couch.  I worried that the graduate school experience I had always dreamed of might slip between my fingertips.  Or worse, that the mental desperation would become too much- that in my attempts to be heard my voice would eventually fade away.

Multiple daily injections (MDI) are not always pretty, but they are a guarantee that insulin is getting into the body.  MDI is literally and figuratively another shot at life.  (More to follow, but not everyone has this guarantee currently; they deserve a chance, too.)

Two years later and I have successfully completed my Master’s degree.

I flew to California twice to participate in Stanford Medicine X.

I didn’t die on my couch.

And I was too busy living to remember that it was my 2-year Shotoversary.

Insulin makes it happen.

graduation-tulips

 

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Reese’s Cups and Hamster Wheels

I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life.  There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).

Here’s a droplet:

When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee.  Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.

-Mary Karr

That’s sort of how I feel lately.  The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here.  The answer is that there is no black or white response- only more questions, and more places to go.  The best work I can do at the moment is simply to voice this.

I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive.  I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes.  I am angry that we do not have a cure.  I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have.  Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.

However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff.  Their love has never wavered, and has inflated into a life raft when needed most.  (Thank you).

Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story.  You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you.  Perhaps you desperately need to be heard, too.

Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.

So, I switched things up and adopted a guinea pig.

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This is Reese.  She is colored like a Reese’s cup.  

She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.  

 

 

 

Insurance Sans Reassurance

Insurance isn’t all it’s cracked up to be.  We’ve been over this on Twitter.  Out-of-pocket expenses remain ludicrously high for many of us, and in my humble opinion insurance gets off the hook way too easily while the media yells at Pharma (which is, of course, its own beast of an issue- but that is an argument for capitalism that goes beyond the intent of this blog post).

It is open season for insurance enrollment, so you would think that the necessary information consumers need in order to select a plan that suits their needs would be front and center.  Far from it.

I am under the impression that no one is an “expert” in healthcare anymore.  Healthcare is too complex, and varies too much by individual situation, for anyone to truly grasp each nuance at a level of expertise.  I am certainly not an expert.  But I do have lots of healthcare experience at a young age, having worked in healthcare for many years, lived it as a diabetes advocate, and earned a Master’s degree in healthcare administration while graduating at the top of my program.

Despite all of the above, healthcare remains a Rubik’s cube of complexity, and I have grave concerns with where we are heading from here.  How on earth can we expect someone who doesn’t live and breathe healthcare as a total nerd to ever figure this stuff out?  We don’t.  And that is how insurance banks on us.

Ever since news broke of CVS Health’s  ridiculous 2017 formulary removals, which included Sanofi’s Lantus, I have scoured the internet for more information.  Would my current insurance provider (which consults with CVS Caremark as a mail order pharmacy supplier) be offering any coverage for my trusted Lantus?

Insulin, too, is its own monster in the healthcare market.  While we need more affordable, accessible options for diabetic folks all over the globe, this has created a pharmaceutical conundrum.  Pharma companies have answered the call with biosimilar development promised to be more reasonably priced than the name brand options.  The Affordable Care Act encourages cost containment, so we cannot be surprised when companies make moves to curtail costs.  My main concern with both the ACA and pharmaceutical development, though, is that consumers must still have an element of choice if we expect them to achieve positive outcomes (and, therefore, to control costs in the long-term).

Despite however biosimilars are marketed, we do not know for sure that they are bio-exact.  I have worked too hard to relearn the insulin wheel since ditching my defective insulin pump to return to multiple daily injections, and I am not interested in being a biosimilar guinea pig right now.  Why mess with the good thing that has been a lower A1c and better quality of life on Lantus?

Bottom line: If I am going to stick with my current insurance plan and provider in 2017, I absolutely need to see in writing if the insulin that keeps me alive each day is covered.  A 45-minute call with a Caremark representative this week had us both scratching our heads and simultaneously sleuthing around on the internet and insurance website, desperately trying to find formulary documentation for 2017.  Google yielded last year’s list, and searching “formulary” or “Lantus” on the insurer website came up with no matches.

Finally, the Caremark rep found the formulary list buried under a certain tab on the insurance website.  My hunch is that insurance companies do not actually want us looking up this information for fear that we may hop over to a competitor offering better coverage of our medications.  The good news for me is that Lantus will be covered for me next year, albeit at a higher price.  When all is said and done, the biosimilar version (Lilly’s Basaglar) is not that much cheaper…

What a convoluted runaround for not that much gain, which is the moral of the insurance story in recent years.

 

 

*If you use FEP Blue, I highly suggest clicking here, here, and, especially, here to learn about 2017 coverage.

 

 

Hope in November

No, this isn’t another corny November election pitch.  I’m talking about hope during National Diabetes Awareness Month this November.  What better way to foster hope than to write letters to the families of newly diagnosed T1Ds?  You can learn more about @mumoftype1’s (Maureen’s) kindhearted project, Letters of Hope, by clicking here.

This is my Letter of Hope:

Hi!

Firstly, I want you to know that whatever you are feeling- anger, sadness, fear, anxiety, exhaustion, cautious optimism, a mix of all of the above- is totally okay.  Even many years removed from the hectic time of a type 1 diabetes diagnosis, you are still allowed to feel these things and to express them out loud, if you so choose.  Not everyone will “get it,” but some good eggs will rise to the occasion and offer support.  The aspect of diabetes that is not discussed enough is how you will see the light in others, and yourselves, more clearly now.  Empathy is just as important of a prescription as insulin.

With empathy in mind, I would like to share some diabetes advice that I wish my family had received upfront:

Life will go on, with some adjustments intertwined to ensure safety.  If your child was diagnosed with T1D, allow him/her to go to diabetes camp, or sleepovers, or field trips.  Have a preparedness plan in place: extra diabetes supplies packed, phone numbers to be reached in case of emergency, teachers who are aware of the diagnosis and know the basics of how to help.

Freaky diabetes situations will pop up from time to time, but trust in your knowledge and abilities to take care of things and to move forward.  Sometimes diabetes just has a mind of its own and you did not do anything wrong to deserve it; every new morning is a “reset button” where you have a clean slate to try again.  Above all else, your child will still get to be a kid, to enjoy school and sports and playdates.  If you are the type 1 diabetic of any age, you will continue to be the person you were before diagnosis.  Your perspective will change for the better; suddenly you will understand just how strong and resilient you are.

Words matter.  We “check” blood sugar, as “test” implies pass/fail.  “Manage” rather than “control” diabetes.  Remember that blood sugar numbers are not “good” or “bad”; they are a guide for making informed treatment decisions.  The person’s character is never implicated by a wacky blood sugar value.  It’s type 1 diabetes; wonky numbers will happen, and you will handle them- sometimes gracefully, other times not so much.  Remember that your job as a person with diabetes, or as a caretaker, is more complex than most people would ever realize; go easy on yourself.

Offer guidance in a supportive manner, rather than lecture.  The islet cells have misbehaved, leading to type 1 diabetes; but the person is never to blame.  Even if there are days where diabetes management seems to slack, remember what it was like to be a teenager yourself.  Be understanding.  Do not try to rewrite the diabetes wheel all at once.  Hone in on one time of the day that seems to need improvement- breakfast, perhaps- and start there to make the process manageable.

Diabetes discussions are inevitable, as you may collaborate on insulin dosing decisions, carb counting, and similar technical items.  Yet once you sit down for a family meal, try to leave diabetes behind.  T1D gets enough air time each day.  Dinner is for enjoying one another’s company, laughing about the funny anecdotes from work or school, being a family that is so much more than the diagnosis of a health condition.  Reserve that time for yourselves.  Take vacations and splurge a little; added insulin will cover ice cream for dessert, and your kids will thank you for giving them that freedom one day.

If and when you want peer support, there is a large, engaged community online- from Facebook groups to blogs to the diabetic online community (#doc) on Twitter.  These online interactions can lead to in-person meet-ups.  The friendships are real and the bonds are solid, whether they are formed online or offline.  We are here for you.  Although we have not met you in person, we are thinking of you and praying for you during this time of transition after diagnosis.

Sending love, and extra coffee!