Parental Access

With dread, I learned our health insurance was changing. Over the past years, I'd gotten to know all the rules and the mechanics of our provider and for the most part, it was working like a well oiled machine. It has taken the better part of this month and many phone calls to get the right prescriptions sent for the right item, to get some pre-authorized, and to verify purchase and payment. 

Yesterday, I hit an unexpected snag. The representative from the new company asked to speak to my son, age 14 years. I asked why? It seems that as a parent of a teen, I have no right to manage or access his account unless he gives me permission. Luckily, we homeschool, so he was present but if he'd been away at a school, I would have had to call back for the man was insistent that I could not talk about William's account without his permission. 

Would I be allow to PAY for William's account without permission? But, of course! Snarkily, I told the rep good luck getting payment since William was now responsible for his own account. In all the previous years with the other company, not once was I asked if William was present and allowed me (his mother!) to manage his account.

I shared this outlandish situation on a Facebook forum for T1D moms, and was told that one member had to have their toddler give permission and the kid couldn't even talk! In general, the rule is for sexually mature kids, which evidently means about 13 years, so that the kid has access to doctors and care for birth control, etc without parental involvement. If a kid, however, uses health insurance for that purpose, the parent will see the claim, just not the reason for the claim. You pay with no information. Parent then goes to the child, which defeats the purpose of anonymity. 

While I understand the idea behind the law, here's the thing. He is 14 years old and has all the forgetfulness of a teen. There is no way I would turn over ordering medical supplies to him. He has no way to pay for those items. He would not order them on time or even have any knowledge right now about how to do so. So to say that you can lock out a parent that has full responsibility for ordering and payment is absurd. 

There is a way around this: I have set it up so that my husband and I have full access to both each other's and my son's accounts. It is a ridiculous step because, even though my son gave assent and knows I'm doing it, access could have been granted online without his knowledge if I posed as him. 

So, even if your child is little, you might want to check that you have full access to all medical records and all online ordering information before you actually need to. Don't assume because the child is a minor that you will be able to govern their account. 

The Cost of a Life

A great anger fills me right now as the Republicans tear apart the ACA without a solid plan for replacing it. There is a projection that some of the repeal will include removing provisions for pre-existing conditions, Medicare, and covering adult children to the age of twenty-six. The very image of McConnell shames me.

For now, we, our family will be okay. My husband, a great provider, works for a good company. Each year, we set aside $3500 which we will lay out in the first month of the year for diabetes medications and supplies. After the out of pocket is reached, much will be covered, but there are many other costs not billable to insurance.

But I worry, so many people aren't so fortunate. Where will they get $3500? How will they keep their children well and frankly, alive? Even with the "down payment", many health insurance companies do not cover at the same rates.

What will William do when he becomes an adult and goes to get insurance and no one will cover him? How will he survive? He won't even have the grace period until he is twenty-six, but we will have to face this in three years.

Here's a breakdown of just the basics (and there are many other incidental things we use and not covered) for you:

Per day costs with insurance negotiated rates:

• Humalog insulin: $24.26
• Test strips: $17.53
• Pump supplies: $28.00
• CGM supplies: $40.78

Total is $110.57 per day or $40,358 per year. Obviously, without good insurance, this would be a great burden. Those with lower paying jobs generally have poorer insurance options as well. Medicaid and Medicare will also likely be slashed. So, what are they to do? 

So many things sadden me about the direction of our country. This lack of foresight about taking care of those in need is one of the greatest. 

Looking Back

I found a draft I never published on my Lifetime Learning blog. It belongs over here on this blog about T1D. It's still true, though it was written last June. I guess I was feeling a bit sassy that day. Here it is:

My engineering degree taught me that there was a balance around systems. You could calculate what went in, determine what occurred in process, and measure what came out. This could all be mathematically solved so that algorithms could make predictions. This is pure bullshit when it comes to the human body and diabetes. See, the thing is, you never know exactly what is going on inside any given human body.

Two nights ago, William's BG was 150 mg/dL at 3:30 a.m. I chose to do half of the suggested correction because he had been somewhat active on a hot day. He woke up in the 80s. Perfect.

The next night, he was again 150 mg/dL at 3:30 a.m. and I did half a correction because of a similar day, and he woke up in the 200s. (And, yes, I should have caught it with the Dexcom CGM, but I didn't. We'd turned off the high alarms because...well because we were somewhere where it was annoying. Sue me.) 

Same input, same process, different output. Was he growing? Perhaps, just maybe, it was the two hamburgers and fat that he had right before bed at midnight? (I'd already gone to bed and missed knowing this.) Perhaps he was growing. Perhaps it was a full moon. Who knows.

Flying Blind

Basketball season started this morning. Almost immediately, we were flying "blind". Concrete gym walls and nylon gym shorts conspire together to block any transmission of blood glucose levels via the Dexcom continuous glucose monitor. He was 86 with 5 units on insulin on board when the practice started.

Past experience with basketball taught me that it can, if he is under enough pressure or adrenaline, raise his BG, so we decided to go "old school" and go by how he felt. Right as practice ended, he was 75 steady. A success.

Murphy was rather startled by the sound of many bouncing basketballs. She decided to climb under my chair and go to sleep.

The Pink Slide

(Disclaimer: I am not a medical person, I don't work for Omnipod, and this is only what I've observed that helped us. Please consult your own doctor.)

The Omnipod insulin pump deploys the canula for delivering the insulin under the skin by way of a needle that inserts the plastic canula and then retracts, leaving the flexible canula inserted. Very infrequently, the needle will fail to retract. In three years of usage, I think my son had this happen perhaps two or three times. That's over 500 insertions for him, but only a handful of failures.

It is, however, helpful to know when this has happened. The first clue for my son is that it is painful. The needle isn't flexible, so it is felt on movement of that insertion site. Looking in the view window of the pod didn't  help me, as the needle would be inside the canula and not visible. So how to know if this has happened?

We look at the "pink slide". If the needle has inserted the canula and successfully retracted, there will be a pink rectangle at the bottom of the yellow circle on the right.

If the needle has not retracted, it will look like a new, unused pod (below) with the pink rectangle near the top of the yellow circle. Here is an unused pod to demonstrate (I don't have on hand a pod that has malfunctioned.)

The pink slide is the best way to know if the needle retracted or did not deploy the canula at all. Upon deactivating and removing the pod, we would find that in a failed insertion the needle was still inside the canula and sharp to the touch (be careful!). Another way to know that it has deployed is that once you start the insertion process, you'll hear a series of softer clicks and one louder, stronger click from the insertion.

Anytime the needle fails to retract, it is important to report it to Omnipod customer service as the feedback helps improve the product. They should replace the pod for you. A photo of the pink slide is available on Insulet's website also.

For my son, this pump is the only pump as he said "no tubes". Any pump will have a problem now and again, but the extreme benefits for us outweigh the cons.

Again, this is based on our own anecdotal and personal experience. If you have any questions, please contact your doctor or Insulet Omnipod.