Just when I think I’ve overcome one hurdle (in this case, the elimination of the pre-existing condition clause with the Affordable Care Act), 10 more appear. I don’t know if I would have experienced the health insurance hang-ups that make me want to bite my nails off and tuck my head underneath my desk at the end of the day, had I not been diagnosed with diabetes at 22.
But in those five years, fighting for diabetes coverage, even something as benign as a 90-day supply for supplies I use every day, has only added to my mental and emotional stress, and in a sense, depleted my overall health and quality of life. I’ve won battles and lost others. But at the end of the day, I still feel beaten.
No matter what I say, no matter how hard I push, no one will see my condition the way I do. They see me as a price tag – an expensive one at that. It doesn’t matter that these supplies or that amount of insulin or that sensor help me live. What matters is that in their predetermined rulebook, it says they do not cover it, and that’s that.
Sometimes, there are workarounds. For six months, I paid for test strips and lancets out-of-pocket (more than $500 for a 90-day supply), submitted a claim for reimbursement, and then received a check from my insurance company one month later. Right now, I’m being shipped my continuous glucose monitoring system sensors every 30 days because my employer-sponsored health insurance through UnitedHealthcare won’t cover a 90-day supply unless their mail-order pharmacy carries those supplies, which they don’t. In the end, it’s costing them and me more, but that’s the predetermined rule they’ve set up. I’ve advocated on my behalf via an appeal and HR, but so far, still receiving the same response.
Other times, I think they’re just trying to make my life a living hell. Recently, I ordered insulin pump supplies through the mail-order pharmacy so I could get the 90-day supply. They charged me more than the durable medical equipment benefit since it went through the pharmacy (apparently, I am supposed to order them through a different company but who knows if I’ll get the 90-day supply then). The pharmacy doesn’t accept returns or provide reimbursements (they automatically charged my credit card without my prior approval). So now my appeal for a reimbursement is sitting in another pile for review. It may take one to two weeks for them to get back to me. Meanwhile, I’m spending more money to re-order the supplies through the correct company because I still need the supplies, and I feel I should be getting the appropriate benefit as opposed to eating the cost of the menial pharmaceutical coverage.
Every time, I tell them I’m just trying to live. I don’t feel I am asking for much. I didn’t ask for this disease. I’m a healthy person, otherwise. I’m just trying to cope with it. But it doesn’t seem to matter. To them, I am just one of many. I am not a person; I am a number. I should just accept what I am given and move on.
But what happens if I die as a result? The last time diabetes cost too much, I started hoarding my supplies and taking less insulin. I could have gone into a coma as a result of long-term high blood sugar. The last time I wasn’t on the pump, without the aid of a CGM, I had two seizures as a result of low blood sugar within four months of each other. As a side note, I had wanted the insulin pump sooner, but my insurance wouldn’t cover it. Then I had the seizures and decided I couldn’t wait any longer.
I feel I have come so far; I want to say, please don’t take that away from me. My morale is down at work. I don’t feel like working at my best when I can’t function at my best, when this fight takes so much of my mental, emotional, and physical energy.
I finally talked to someone in HR who seemed to have some empathy for my plight. I wish I could have told them these issues may seem small, but they stem from a long battle, one I’ve been fighting since I was diagnosed with this disease, and a fight that’s been tenfold in the past two years when I had inconsistent coverage due to denials and lack of full-time employment. I’m so tired of fighting.
But my friends would tell me don’t give up. Your life is worth it, and you deserve to be happy. You deserve to feel “normal.” But what is normal? When I look at the office I’ve acquired and the work I’m proud of, I think of how far I’ve come professionally. I don’t want to give up anything more for diabetes. I don’t want it to ruin my life. So I mark the submitted appeal off my task list and hope tomorrow’s outcome will be better.