Really, must I write on this? My first thought when I had the urge to write on my blog. Answer: yes. I am an advocate, and with that responsibility comes educating, raising awareness, standing up for…no matter when, where or why; even in the most uncomfortable or uncharted circumstance. I know the entire ‘insurance’ thing has been hit over the head a bazillion times; but I must address it one more time myself. Add me to that list.
After spending part of my afternoon on the phone with our insulin pump and meter company (okay, the majority of the afternoon and all of the baby’s nap) on the phone, I knew that I needed to write on this topic.
In less than a year and a half I have had to deal with discrimination, ignorance, delays, customer service who knows nothing about our disease, appointments, safety issues…etc. it has become clear to me that the insurance systems, customer service reps, schools, and even diabetes supplies manufacturers are not set up for anything other than ‘run of the mill’ average needs. And we definitely do not qualify under that term in any way, shape or form.
Today I am going to dive in to insurance, and bite my tongue best I can to continually remind myself that these systems are not perfect and were set up by humans. Once, I can remember praising how awesome insurance can be and how easy it is to use…that was before we ever had to really even use this service. I now understand the term ‘jumping through hoops’…and it is no easy task to complete.
First run-in with insurance was upon Kinzie’s release from the hospital. We ran to the pharmacy to fill her prescriptions…naively, we went in with a bounce in our step and a mind-set it was just filling any prescription. I walked out of that pharmacy with a tear in my eye and tail between my legs; I was thrown to the wolves into the world of ‘insurance denial’. A term I would rather soon forget.
Just to get ‘essential’ supplies to make us last until we went to see our endocrinologist for the first time less than 4 days away it cost $500 dollar, and insurance wouldn’t pay much of it. Their claim was at the beginning ‘is it necessary for her condition’? To say the least, yes, it is and was; unless of course I didn’t care if my daughter lived. There is no way around the need for her medications and in fact, we needed even more supplies that we hadn’t even filled or heard of. So being subject to such a huge cost I was thrown back, I knew diabetes was expensive, but this supply was to only cover half a month. Rescued by my mom, who happened to be with me…, she paid for our first script fill. What do families with these types of surprises do when they do not have the support I do? Every day longer I am in this journey, that question has plagued me. I wish I had a solution for that.
So we were set for our supplies until we went to our endocrinologist appointment…and with that appointment came an entirely new regimen and many more necessary scripts. If it weren’t for the amazing medical team we were blessed to have, I am sure my insurance struggle would be even more drawn out. Because of them, we were able to get insurance to cover their portion of our scripts/supplies.
Next major run-in (remind you, we have had several, but this one a milestone) came when we started on the insulin pump. The insulin pump can be the best thing in the world when you are fully equipped to manage it. You can go into DKA sooner on the pump so it is essential you monitor BG, ketones and do site changes regularly.
3 months after we started the pump, our wonderful always denying insurance decided that they didn’t want to cover our pump supplies because our (then) supplier hadn’t re-upped their contract and were no longer in network. (now, insulin pump supplies cannot just be picked up anywhere. You have to have scripts from them and get them from suppliers. Pharmacies don’t even carry them).
Now I get the whole ‘network’ idea, but what happens when there is absolutely no durable medical equipment supplier in their entire network, in state or out-of-state??? You would have thought asking that questions was rocket science…because not one person from our insurance company could answer that question for nearly a month. As much as I would like to be able to say we can buy those supplies out-of-pocket a month, we simply cannot. They run several thousand of dollars on top of our other ‘regular’ diabetes supplies.
So here we are, no supplies, insurance denying to pay their portion and our hand tied. I had to fight every day for 3.8 weeks. Finally after talking to the ADA and superintendent of insurance for our state I was able to be assigned a case manager (which I was previously denied multiple times). This type of struggle has pretty much become a regular part of my life. It is what it is and I have become quite the problem solver and fighter.
After many phone calls, dropped calls, brick walls…we were able to meet with our case manager for our insurance. 4 weeks after this issue had started, we had it resolved. Now every time I order our supplies, I automatically cringe. We have also had run-ins with our insurance when it comes to doctor appointments…including visiting our endocrinologist, which, if we don’t they won’t approve to pay for our pump supplies. So when they complain about our visits, and yet say they will deny if we do not see our endo every three months. Doesn’t make sense…yet another fight we have encountered numerous times.
We then continually get claims that our policy number isn’t current (which it is) at all doctor appointments, which then requires them to call our insurance carriers to verify this information (and being put on hold multiple times). We have also addressed this issue with our insurance, but they continually ignore the problem.
I have repeatedly had to wait on hold and be transferred from customer service rep to customer service rep all within our insurance company. And every single rep I have talked to have no experience with type 1 diabetes. They do not know that a Type 1 needs insulin to live. They, on many different occasions, asked if Kinzie could just take a pill. (Oy! The complete ignorance, if only it were that easy!) They do not know what an insulin pump is, what supplies are needed or what is even does. Many times they ask why I don’t just use our local pharmacy. Not once have I come in contact with any customer service representative that knew anything about this disease and it’s regular needs. And when I am transferred multiple times in just one day for one issue I find myself telling the same story, repeating the same facts, and nearly attacking them for their complete ignorance.
I get that customer service reps are just ‘run of the mill’ average people…but we are not. Our needs are indeed different. I think that it is an injustice how the system works all for the name of ‘bottom dollar’ and not for the name of greater health.
Had I not had to take this journey into Type 1 I would have never had my eyes opened to this and perhaps would have continued to be ignorant and oblivious of such problems. I would have never had the need to advocate for such a cause or even remotely begin to venture out of my comfort zone. Insurance isn’t tailored to the needs of each prescriber, as it should be. The customer service reps, or the people to deny claims do not even have to have the education needed to make such informed decisions. How fair is it that the fate of our daughter’s medical needs get to lie in the control of someone who is only trained to see bottom dollar?
Food for thought I suppose. So I strongly encourage all of my faithful viewers to take into consideration the next time you vote or get to exercise your voice to look into greater causes than what you are facing now, because you never know what you will face tomorrow. Don’t accept what isn’t just, fair or right just because it may not pertain to you today. People who have no voice need yours; the decisions you vote for now may affect your children, or your grandchildren. Educate yourself for what you are voting for and what the outcomes may be. Be an advocate for the future as well as the now.