I need your help, please. I’d like to hear your “Why I restart my dexcom?” stories. Can you please read this post and let me know your why? Do you have examples to share? I’m sharing mine.
This request for input is partly motivated by this article in Diatribe where they state:
“This [restart topic] is a complicated issue, since many people pay a lot of money for CGM and the ability to extend a single sensor’s wear time – e.g. to 14 days – makes CGM more affordable…We’d like to see an end to complaints about not being able to “extend” the system – or even whether it’s possible. It’s been decided, and we believe this decision is in the best interests of people with diabetes, the system, and providers.”
Here’s my problem with that…it’s not about money by and large. Let’s expand our vocabulary as a community and take this as an opportunity to think about what CGM *really* means for us. An expanded conversation may just help educate the CGM manufacturers and insurance industry to make changes so that restarting is indeed a thing of the past…WITHOUT sacrificing what we are really after…LESS downtime, LESS hassle, MORE reliability for our MEDICALLY NECESSARY equipment.
I’m a bit tired of the “restart conversation” being boiled down to money so very often. Yes, money is a factor. But…for so many of us…money is not the primary driver. The real driver is about redundancy, dependability, and flexibility in our medically necessary equipment.
Medically necessary or Helpful tool?
Do you feel like your insurance understands how valuable this CGM is to you? Or dexcom? Do they understand? Framed another way, do you think that insurance/dexcom kind of view your CGM as a “helpful tool” vs a “medically necessary” device?
For many in the community, we view this as a medically necessary device whereas insurance/dexcom view this as a helpful tool. There’s a BIG schism between us and our supplies as a result.
Insurance approves, and dexcom builds, a CGM system that has gaps in my BG coverage.
- A mandatory minimum 2-hour window without BGs.
- Prescribed supply chain that has zero tolerance for inevitable equipment failure or travel.
- No opportunities to take steps to provide a backup plan for truly CONTINUOUS glucose monitoring.
Why is that supply chain setup like that? Because CGM is still widely viewed by outsiders as a “helpful tool”. But, those of us on the inside of managing this disease who choose to use a CGM…it’s actually a medically necessary device. CGM has shaped how we live our lives, and allowed us to live a life more closely mirroring those of our non-pancreas-challenged friends. That’s not selfish or asking for too much…it’s actually also a good business decision for the medical community. Win-win.
With the approval of the G6 for no-finger-check management decisions, this means more people are relying on the device for their medical safety. Blood glucose meters are left behind more often. BGs are checked quickly on a phone or watch so that other life decisions can be made more quickly. Travel has become a bit less intimidating.
So yeah…it’s medically necessary. It allows my daughter to not have to restrict her life or “take the blame” for having a disease…but rather she can be protected medically as she leads a normal life. She can do the things that otherwise might be so difficult to traditionally manage BGs during (trampoline parks, long backpacking trips, stressful job situations) without having to put herself into medically-dangerous territory.
The Diabetes Burden
Living with diabetes brings all sorts of burdens…not the least of which is managing all the situations that you need to plan for backups. Backups upon backups upon backups. Because you can’t be at the beach one afternoon and tell diabetes “hey, I forgot to pack the glucagon this one time, so give me a hall pass today, ok?” I wish it worked like that. And you know what? A person with diabetes shouldn’t have to be any more perfect than their non-diabetic friends. They forget things too…it’s just not life-threatening when they do. And a person with diabetes shouldn’t be blamed when things go wrong with all the spinning plates they manage…it’s just life that a plate falls once in awhile.
Let’s expand our thinking…in an ideal world, how could your diabetes burden be lifted if insurance/dexcom viewed the CGM as medically necessary? Prescriptions could be written and filled so that you could:
- have an extra sensor/transmitter in your work desk…no longer need to leave work because your CGM failed and you don’t have enough supplies to keep duplicates at home/office.
- travel for an extended period without wondering how you are going to get your supplies while in the jungles of Costa Rica, for example.
- have access to enough supplies that you could wear overlapping sensors to provide redundancy and overlap.
What’s your “Why”?
To end the “restart discussion”, we need to open the discussion about WHY we restart sensors. It is not about money. We do our community a disservice when our articles only discuss this as a factor.
It’s about being able to depend on a medically necessary device. And a medically necessary device needs to have a robust backup plan and solid supply chain.
My “why” is because I am filling that gap. Exactly 30-day supply leaves no room for error. It doesn’t have to be like that. There are things that the industry can do, if they can shift their thinking away from this restart issue being about money. It’s about a medically necessary device in my daughter’s life and I need it to have backup and continuous operation.
As I sit on the phone now with Dexcom because our G6 sensor has failed (bent wire when it was inserted last night) and I have no G6 sensors on the shelf (it was the third in our box of 3 for the month…next one doesn’t ship out for 2 days)…I’m reminded of my why. I’m filling a gap that doesn’t have to be there. I should’ve been able to pull this sensor hours and hours ago when I knew it was bad and simply replaced it. Instead, we’ve absorbed the burden that doesn’t need to be there simply because I have no backup on a shelf and I’d hoped a miracle recovery would’ve been possible. We can do better than simply calling this a “money” issue. It’s our medically necessary device that allows her to live a normal life safely. Today will be a medical burden and it didn’t have to be that way. A small shift in thinking could make this go away and I wouldn’t ever have to write another post about restarting sensors.
Please share your why in the comments. Please…I’d like to have this conversation. It’s important.