I posted this blog back in 2016 when the Medtronic/UHC agreement hit the press. This week, their agreement has expanded to include pediatric patients, and it’s the same kind of ridiculous.  No insurance company should be making decisions that are best made by patients and their medical team. I’m re-running the post from back then because, sadly, it’s still relevant. (The only irrelevant things in this post are references to pregnancy, because I’m not pregnant and never will be again. And I’ve updated the post to reflect new medications, etc. )

A running list of medications/devices I currently use throughout the day to attempt to manage my type 1 diabetes:

  • insulin pump (t:slim X2)
  • insulin pump supplies (cartridges, tubing, cannula)
  • glucose meter (Roche/mySugr)
  • glucose test strips (Roche/mySugr)
  • Humalog insulin vials
  • continuous glucose monitor (Dexcom G6 at the moment)

And then there are the back-up items that need to be kept on-hand in case of a hiccup:

  • Blood pressure medication
  • long-acting insulin (Treisiba, for pump breaks or when the pump breaks)
  • Humalog insulin pens (to keep in my bag just in case)
  • glucose tabs
  • syringes

These are the health care professionals, diabetes-specific and otherwise, whose numbers I keep on file and see at least once a year:

  • endocrinologist
  • primary care physician
  • certified diabetes educator
  • regular OB/GYN
  • cardiologist
  • hematologist
  • psychologist
  • dietician
  • dentist
  • podiatrist
  • dermatologist
  • retinal specialist
  • ophthalmologist

This gets pricey.  But I have health insurance.  And a job.  And emotional and financial support from my family to help fill in gaps where shit gets weird.  I don’t make use of everyone/everything on these lists every day, but my health is cumulatively best managed by all of these things being available.

Chronic illness keeps me busy.  Managing it well, even more so.

I’m trying to imagine one of the bricks being pulled out from this wall of attempted proactive care that I’ve spent 32 years building around myself.  What if I found out I was pregnant and didn’t have a  OB/GYN to help guide me through a high-risk pregnancy and complicated delivery?  Bad.  What if I needed to check my blood sugar seven times a day but my insurance company only covered three glucose meter strips per day?  Worse.  What if I needed insulin but didn’t have insurance coverage and didn’t have enough money to pay for my life-sustaining medication?  The end game there is effing terrifying.

Access is an issue.  I have been able to voice opinions about my diabetes devices because I’m lucky enough to have access to devices.  People talk a lot about “privilege” and sometimes people roll their eyes, thinking another buzzword is being deployed, but seriously, what does your medicine cabinet look like?  When I go into my closet, I have a whole shelf dedicated to boxes of insulin pump supplies and CGM sensors, enough lancets to check my glucose levels until I’m 113 years old (read: two boxes), and my fridge has a two month supply of Humalog sitting pretty in it.

I am lucky.  To not acknowledge that is criminal.

I’ve been thinking about the United Healthcare / Medtronic stupidity.  It’s not that companies are making a business deal, but that their business deal supersedes what’s best for the patient.  No company should be telling me and my doctor what’s best.  Isn’t this part of why my doctor doesn’t have those pens with drug logos on them anymore?  Because company influences were supposedly removed from my doctors’ interactions with me?  Because the decisions made between me and my diabetes healthcare professional were supposed to be about what’s best for my health and well-being?

Oh right … that.

This issue isn’t unique to Medtronic or UHC.  Insurance companies have their preferences, and their preferences rarely take the preferences of their patients into account.  (Remember when people were bumped from Novolog to Humalog based on a change in their formulary?  That went well.  And by “well,” I mean people were pissed off and, as a result of the change, their care suffered.)  Thirty years of type 1 diabetes has shown me that a lot of groups want their hands in my disease, and not everyone is putting the patient first.

Which is why the patients need to put the patients first.  Immediately.  Loudly.  Consistently.  And without rancor … or maybe a little rancor.

I have no idea how this issue will be solved, or how to keep things like companies telling patients what’s best from becoming standard fare, but sitting idly doesn’t do a damn thing.  Patients who are impacted by the United Healthcare / Medtronic thing need to tell their stories, both via JDRF’s letter writing campaign and sending them directly to UHC and Medtronic.  Stories shouldn’t be limited to this specific issue, though.  Access to devices that work for us matters.  Access to insulin matters.  Access to proper dental care and eye care matters.  OUR HEALTH MATTERS, and “you shouldn’t have to decide between medical care and rent.”

What do you want to see changed?  Why does it matter to you?  And how will you let people in “positions of power” know that access matters?

We are at the center of healthcare.  That’s what these different groups and movements keep asserting.  Embrace that.  Without action, the “wealthcare system” will eat us alive.  Do something.  Suggest something.  Raise productive hell.  Raise your voice for yourself and for those who can’t.