The only way to deal with an unfree world is to become so absolutely free that your very existence is an act of rebellion. ~ Albert Camus
Many of us pick paths in life, partially or even solely because that path leads to health insurance. Many of us choose jobs because of it. Some of us even choose careers because they are more likely to offer stability in the form of a health plan. While Jason and I wouldn’t have gotten married if we didn’t love each other, I never got a real proposal, and we postponed the traditional wedding to run off to Vegas so I could get added to his benefits. I was changing jobs and would otherwise have been without insurance.
This is not to say that people without diabetes don’t take similar actions for the sake of health insurance, but it’s my personal observation that diabetics are more likely to build their lives around getting and keeping health insurance. All of that, and one of the greatest ironies of living with diabetes in the US is that health insurance is really only for healthy people. If you have anything more than a sinus infection or a hangnail, you’re in for a rude awakening because your health insurance company doesn’t give a flying fig about chronic or serious illness. I’m pretty sure they’d be relieved if you took your arthritis or cancer or depression or diabetes, and snuggled up on the railroad tracks of your local commuter train at rush hour because keeping you around simply isn’t cost-effective.
If you’ve been reading my blog for a while, you know that I was on COBRA for 18 months. In anticipation of COBRA ending, Jason and I considered our options, and I automatically looked at the premium plan his employer offers. When I’ve had a choice of plans, I’ve always gotten the bells-and-whistles plan because I use a lot of health care, and figured I was getting my money’s worth. However, the premium plan offered by his employer was exorbitantly expensive, and we would have lost about a quarter of Jason’s salary. It wasn’t something we could swing if we intended to continue paying our mortgage and eating food. What can I say? We like to live large.
With dejected resignation I started to look at the basic plan offered by his employer. The benefits themselves were mediocre at best, but they actually weren’t that much worse than the more expensive, supposedly better plan. The biggest difference was the paycheck deduction, which wasn’t too steep compared to the deduction for the premium plan. Most concerning to me about the plan was the $1000 deductible, and the fact that it applied to durable medical equipment. So when the time came to buy pump or sensor supplies, I’d have to pay for the whole thing out-of-pocket until I met the deductible. After I met it, I’d still have to pay 20%, which isn’t horrible, but was difficult for me to digest since the plan from my previous employer had covered DME at 100%. I’d be going from paying nothing to conceivably paying an estimated $1600 a year, just for pump and CGM supplies. Ouch.
It’s the plan we went with, only because it was the only one we could afford, and I’ve always maintained that with diabetes, given the choice, even an awful plan is better than no plan at all. Thankfully, I only had one memorable issue during the first few months, stemming from a visit to the ER in Orlando after I fell and broke my hand at the ADA conference. For one problem though, it was a whopper that took months and some assistance to resolve. Jason’s employer’s benefit year is July 1st to June 30th, so last July, the mediocre benefits became worse. My level of contempt for Horizon Blue Cross Blue Shield of New Jersey and whoever it is at Jason’s company who picks these pathetically insufficient health plans has sent me to a new level of scorn.
During this benefit year, I have had more problems and aggravations than I can succinctly summarize, but in order to illustrate my point, I’ll offer some examples. One of the most absurd issues I had was Horizon’s initial refusal to pay for a visit to my primary care doctor. I would have expected them to contest paying for a specialist visit, but my primary doctor? Thankfully, this one was easy to rectify. I called, complained, and it was resolved.
There was an issue when I went to the ophthalmologist in November. I have a history of retinopathy, including multiple laser treatments, and a vitrectomy in 1998 to repair a hemorrhage in the vitreous fluid of my right eye. Getting periodic dilated eye exams is important for all diabetics, as we know, but this is especially true when one’s retinas have proven themselves to be leaky. When I go to the doctor he does a dilated exam and takes photos of my retinas in order to compare them to past photos. As far as I know, this is the best way to discern if there have been any changes in the vasculature of the retinas. I had this routine appointment, paid my $40 co-pay, and figured that was that.
Then I got the explanation of benefits that the retinal imagery procedure wasn’t covered as part of the appointment, and my deductible applied so I’d have to pay out-of-pocket. My ophthalmologist appointments have never been itemized like this. I’ve always paid the co-pay, and that covered everything that was done as part of this routine exam. I had a fit over being charged extra for the imagery procedure. After calling Horizon and arguing with someone who probably didn’t know a retina from a spleen, I ended up having to call a patient advocate agency with whom Jason’s employer contracts. She finally got it resolved for me.
In both of those instances, Horizon has errantly tried to apply my deductible, and there have been additional instances of such that I’ve either had to call and resolve with Horizon, or failing that, call the patient advocate for assistance. I suppose that someone who is less familiar with the unfortunate ins and outs of a for-profit health insurance system wouldn’t realize Horizon was screwing them, and would probably just pay the bill. I’m stubborn and Horizon consistently enrages me so I’ll call and bitch until I get these things sorted. However, because I have had so many recurring issues with them, and because I’m already frustrated with my sucky benefits, my wherewithal is wearing thin.
My most recent issue was with lab work I had done a month ago. I had a lab slip from my nephrologist, who I see every six months to make sure my kidneys are stable. Blood and urine labs are her only way of knowing if my kidneys are functioning, filtering and not deteriorating. I also had a slip from my endo for my regular check-up. It was all routine lab work that I get done prior to seeing both of these doctors, so I was taken aback by the explanation of benefits I received that Horizon wasn’t paying for the lab work, and my deductible applied.
I should interject that I still haven’t met my deductible. I’ve purposefully avoided ordering pump supplies since paying the $600-$700 bill that will result is going to be a wee problematic. I’ve been living on the stockpile I amassed when I had better health insurance, but my stockpile is dwindling. I digress though.
I called Horizon to find out why my lab work wasn’t covered, and the girl told me routine labs are covered, but diagnostic labs aren’t. Diagnostic? I was confident my endo wasn’t trying to confirm a 32-year old diagnosis of an incurable disease. I mean, seriously, duh. I could tell she was not even going to make an effort to help me, so I called LabCorp, but they couldn’t help me either, telling me they bill based on the coding provided by the doctor who orders the labs.
I called my endo. The lady there seemed sympathetic, probably because I was in tears at that point. She looked at the lab orders, and said it had been coded just as it’s always coded, a diagnosis of, surprise, diabetes. She suggested I call Horizon, and ask them how it was supposed to be coded so it would be considered routine and not diagnostic. Once I got that info, I could call back, and they would gladly help me.
I called Horizon again. The girl with whom I spoke was far nicer than the girl I had gotten 45 minutes earlier. She investigated while I was on hold, and eventually returned to explain that she couldn’t tell me how it was supposed to be coded, and that the specific labs that were ordered are considered diagnostic, even though I explained that I had been diagnosed decades ago. There wasn’t anything she could do.
Aggravated, I set it aside for a few days, but yesterday I received the bill from LabCorp so I got the patient advocate on the phone. Since I’ve enlisted her assistance with resolving multiple issues over the last 3 or 4 months, she now knows me by name, for which I apologized, and she half-heartedly reassured me, “It’s my job.” She explained that routine labs would be like a cholesterol check as part of a physical, but because I have a diagnosis, and they have to “check my levels”, it’s considered diagnostic. It kind of made sense in an ass-backwards way when she explained it, but upon further consideration, I don’t understand. When they check cholesterol as part of a “healthy” person’s physical, aren’t they trying to see if his diagnosis is high cholesterol or not? That seems more diagnostic to me than checking my A1c as part of a routine diabetes check-up.
From the bottom of my heart, and despite my bitching, I try to be thankful I have health insurance, and I’m immensely grateful Jason has a good job, aside from the egregiously shitty health insurance. I’m sure not having any health insurance would be a tremendous financial and emotional strain for us, as it is for all the individuals and families who have diabetes, but no insurance.
However, I’m worn down from being on the phone with Horizon, the advocate, and a list of providers, haggling with people who sometimes know what they’re talking about and sometimes don’t, who are sometimes helpful and sometimes not, “We can’t help you, call the provider… We can’t help you, call Horizon”, the endless hours I’ve lost being on hold, explaining, explaining and more explaining about how this bill or that bill is incorrect. I’m brimming with hate and rage for both Horizon and Jason’s employer, a healthcare company ironically enough. When I’m in a better frame of mind, I don’t wish diabetes on others, but when these health insurance issues have frayed my last nerve, I hope everyone who complicates life with diabetes by making it so difficult to get supplies and services comes down with a raging case of destroyed beta cells. I want them to really understand what it means to navigate the impossible system they’ve constructed, and continue to support and defend.
Health insurance or not, diabetes sucks an unreal amount of resources from us, and I admit I get pissed other people don’t have or even understand these expenses. I’m not just talking about money either. It’s time, energy, emotion. It’s the toll it takes on relationships, our physical health, and our mental health. For kids, it affects academics, and for adults, it affects careers, marriages, and parenting. All we want is the medication, supplies, devices and services that will best allow each of us to live lives that are hopefully long, productive and filled with enough joy to make all this aggravation, worry and heartache seem kind of worth it.
The problem is that there is this constant sense of having to justify ourselves since existing as a type 1 diabetic in the 21st century is a very costly prospect. Uneducated halfwits like Red Peacoat and Khaki Pants want us to subsist on the same medications and management recommendations that were status quo in 1980, and I have little doubt there are people who think our lives are not even worth those outdated resources, let alone ones that provide us the best opportunity to live full lives.
So all we do is fight. We fight for health care, we fight for support initiatives to assist low-income diabetics, we fight for accommodations at school and work, we fight for better technology, we fight for mental health support, we fight to be cured, we fight to raise awareness, we fight to financially sustain ourselves under the looming costs of this disease, and for many of us with health insurance, we fight to receive benefits to which we’re supposedly entitled under the provisions of our respective health plans. In the middle of all that fighting, we’re forever fighting to keep our BG’s within range so we don’t have to fight complications and early death. All of those fights boil down to a single fight, the fight to validate our existence. We tell people, please, let me have what I need so I can live a life that will hopefully be long and productive, so I don’t die too young, so I won’t be permanently disabled in any of the numerous ways that diabetes disables people. It’s perpetual bartering. If you give me this, I’ll be able to live. Then we wait to see if they think our lives are worth it.
Twinges of doubt are inevitable when there are incessant suggestions that your value as a person is less than that of someone without diabetes. Never knowing who might not think you’re worth the cost of the supplies and services you need is nothing short of demoralizing. Fighting with my insurance company is tiresome for sure, but negotiating for my life and justifying my existence is downright exhausting.