I used to have a really good poker face. People could say just about anything and my face would seldom give away how I actually felt. As I’ve aged and life has given me more experience, my poker face has gone to the wayside. Probably not so ironically, the filter between my brain and my mouth has also deteriorated over the years.
So when someone recently asked me if my daughter was being “compliant” with her diabetes care, the look on my face probably spoke volumes before my unfiltered response came pouring from my lips.
For anyone living with diabetes, we probably have our own list of words that we hate to hear or use. “Control” is probably the top of my list because it indicates I can make it do what I want it to do. The reality is that there are times that I do what I know is right and what should drive the response I want and it still goes completely the wrong way. I prefer to use the word “manage” – because regardless of what’s happening, I always do my best to manage through it. Other people scoff at the word “manage” when it comes to diabetes.
The word compliance didn’t used to bother me until recently. Maybe it was just the tone in how it was asked, I’m not really sure.
Regardless, the person who asked it probably was expecting a simple yes or no, but it led to a greater conversation.
The Short Answer
Let’s get right the short answer to the question that was asked: In my home, for my thirteen year old child, compliance is not an option.
I am hands-on and very aware of what happens with my daughter’s care on a daily basis. She’s a thirteen year old child who isn’t ready, willing or completely capable of managing this on her own.
She also wears a Dexcom continuous glucose monitor and I work with her to try to keep her blood sugar between 70-140 mg/dl and I get alerts when she’s out of that range. There is no “sneaking” of food because we have a “eat what you want – just give yourself insulin to cover it” agreement. I’ve never wanted to make diabetes about food or restrictions.
If something goes awry, I see it and work with her to respond to it.
I have a general idea of what her inventory for supplies looks like – including insulin, test strips and medical devices because I make a point to look on a relatively regular basis.
She’s “compliant” because I manage her care.
But this concept of “compliance” isn’t always so simple. Why do I think that?
Lack of Support
For some people who are living with diabetes, they don’t have the support that they need. I’ve heard horror stories from people who are told they have just been diagnosed with type 1 diabetes (T1D), are handed a vial of insulin and a bag of syringes and are told, “I’ll see you in three months.” Some doctors and nurses don’t return calls, don’t teach their patients how to look for trends that may indicate a dose may need to be changed or take the time to work with a patient to understand why (s)he isn’t getting the results that they expect.
We were fortunate that when our daughter developed T1D that we landed at one of the best diabetes centers for children in the country. They have a program for patients in their first year of diagnosis that provides a level of education and support that I believe is a critical reason that we live well with diabetes. Even today, almost four years in, the level of support we receive at or between appointments is incredible. Which is sort of a sad statement: what they provide should really be the standard of care that patients should expect – but alas, our system is broken (that’s a whole other post by itself).
The unfortunate reality is that some people lack the familial support that they need. Whether that is parents who expect their children to navigate the challenges of management independently before they are ready or not providing relief when it’s needed. Diabetes is a lot for a child or teen to completely manage on their own without support.
Even a lot of adults who manage diabetes need support from family and friends. Compassion goes a long ways, but becuase of a lack of understanding of the realities of it, sometimes others fall short in how they offer support.
Sometimes, we also don’t let others help us and carry the burden on our own rather than asking and receiving help or support.
Sometimes patients may appear to be non-compliant because they simply can’t afford the amount of insulin they need. There are too many people who die because they rationed insulin, too many people who end up in diabetic ketoacidosis, too many people who are deciding whether to buy groceries or insulin.
Yes, there are patient programs that are supposed to help – but the application process can take time and not everyone qualifies.
Yes, there is an insulin available at Wal-Mart for $25, but if that were a viable and easy solution, more people would be going to Wal-Mart (see this article from Insulin Nation for more).
In addition to the pricing component of insulin access, there is also the issue of brand access. Insurance companies and pharmacy benefit managers drive what insulin people can easily access at the pharmacy counter.
While we have friends who can switch seamlessly between Novolog and Humalog, my daughter cannot. When our insurance said Humalog was the preferred brand, we went into it with an open mind even though we had used Novolog for three years at that point. We made numerous adjustments to her basal rates, insulin to carb ratios and everything else and could not find anything that resembled balance. She would sky rocket, crash and falter and fail and she felt like hell. We appealed and were able to switch back to Novolog and all was well again. Somewhere along the line, we tried Fiasp and it has been amazing for her. As much as I hate the word “control”, it almost gives us a semblance of control.
When I tried to fill her most recent prescription for Fiasp, we received a denial notification and a requirement that she go back on Humalog since it is the preferred brand. That immediately threw me into an anxiety attack and we started the appeal process. The insurance company wanted her to be on Humalog for a month – which really sucks because it’s her summer vacation and because of the insurance benefits, she was going to be asked to spend half of her break feeling like hell to show that it didn’t work.
We are on the tail end of appealing the denial and I am pretty sure from what I can see online that we are going to be allowed to stay on Fiasp.
How many patients are viewed as “non-compliant” because the brand of insulin they can access through their insurance company simply doesn’t work well for them? What if a doctor worked with a patient and was able to have them try an alternate brand to see if it worked better? While Fiasp works best for us, I don’t think that makes it the best insulin. Like everything else in diabetes management, management approaches need to be catered to the individual – and that should include finding the insulin that works best for the person.
Depression and Burn-Out
I believe that mental health and physical health are intertwined. If a patient is “non-compliant”, is there consideration given to whether they are dealing with anxiety, depression or burn-out?
As a caregiver, I deal with my own burn-out and since I am the primary caregiver, when I am burnt out, you can often see it in my daughter’s Dexcom graph. I’ve written before about how I give my kids my all every single day, but some days, I just don’t have as much to give. I’ve also said that I think I do better managing my daughter’s diabetes than I would if it were my own. I love her a hell of a lot more than I love myself and I’m willing to do more for her.
If someone is dealing with depression, low self-worth, anxiety or burn out, how do we expect them to care about pre-bolusing, carb counting, patterns, trends, highs, lows or any of the other countless expectations that come with managing diabetes?
Mental and emotional health are a critical piece of diabetes management. And unfortunately, people with diabetes are far more likely to also struggle with depression.
Sometimes with my daughter, we have to put her emotional health before her blood sugar. She’s fortunate that when she needs a break, she knows she just has to tell me and I will pick up even more of the weight for her … but not everyone has that.
So you see, this issue of “compliance” is one that I feel strongly about. In part because it’s just a stupid question to ask a parent of a kid who is living with T1D (though I truly don’t think it came from a place of malice), but because diabetes management isn’t just about counting carbs and dosing insulin.
If someone isn’t getting the desired outcome, they need to be looking at the root cause:
- Do I need more support from my parents or doctor?
- Do I need more education?
- Do I have affordable access to the brand of insulin that works best for me?
- Do I need to also focus on my mental and emotional health?
One of the things that has been most critical on our journey with T1D has been our community. I have other Moms I can call, text or cry with when I need it. Moms who understand what I mean when I say, “we had a rough night.” We are fortunate to have access to the technology and insulin that works best for us.
But not everyone does.
The question shouldn’t be, “are you being compliant” as much as it should be, “do you have what you need to be as successful as possible?”