Rising Health Care Costs: The T1D Label

I’m nervous about the future of health care in this country, especially for type 1 diabetics like myself. I was diagnosed almost five years ago at the age of 22. I have no family history, and there was no evidence of an autoimmune attack so the doctors do not know why my pancreas just stopped making insulin. But it did.

Many researchers point to a combination of genetic susceptibility and environmental triggers. With the amount of chemicals plaguing our food and our household products, that’s not so surprising. But then why, among my two brothers and a mother and father, was I the only one that contracted diabetes? When I was diagnosed, my parents were surprised, mostly because out of everyone in our family, I was the only one who made a daily, concerted effort to eat right and exercise. What was it for?

This is a question I no longer ask, and I am thankful I have employer-sponsored health insurance that will cover the cost of my expensive disease. But when it comes to health care, I am one of “those” who potentially costs the system. I fall into the “high-risk pool.” From an evolutionary perspective, I should have been weeded out of the population five years ago. But here I am.

Even though I am no longer considered “young and healthy,” I still consider myself “young and healthy.” I manage my diabetes well with an insulin pump. I maintain an A1C of 5.6 (average blood sugar readings over the last 90 days). My average daily blood sugar readings range from 70 to 160. I still have bad days, and if I had a continuous glucose monitoring (CGM) system, I’m sure it would show a higher range, but when you have to survive on animal insulin injections and carb estimations, how much do people really expect you to get it perfect?

I’m thankful for the insurance I have, which allows me to afford my insulin pump supplies, my test strips and insulin doses. There was a time when I didn’t have coverage, when I had to pay for my “life source” out-of-pocket, and suffered the consequences (financial and physical). I’ve endured a health insurance roller coaster in the past four years.

It started when I decided to make the switch to graduate school. I signed up for student health insurance, and even though I inquired about diabetes coverage, they failed to mention a $1,000 cap on prescription coverage. My insulin injection pens and glucose test strips, at the time, cost $750 per month (without insurance coverage). So by the time I filled my first set of diabetes prescriptions, I maxed the cap, and my insurance refused to pay for anything more. Not to mention because it was student insurance, I had already paid for a full-year premium, and there were no refunds.

Within a two-month period, I had acquired $1,500 in debt. As a graduate student making only $13,000 per year, I knew I would not be able to survive at this rate. Not only that, but since the insulin was so expensive, I stopped using it, and as a result, put unneeded pressure on my kidneys and heart. Even though I never experienced diabetic ketoacidosis (DKA), I did suffer a few seizures as a result of overestimating my insulin doses in an attempt to correct my long history of high blood sugar.

But then, I found a loophole. One of the first implementations of the Affordable Care Act was that a child could remain covered under a parent’s plan until age 26. Thankfully, my parents had insurance, and for the next year and a half, I was able to budget deductibles and co-pays, and invest in an insulin pump. Ever since being on the insulin pump, I have not had a seizure.

Unfortunately, when I turned 26, I was working on a contractual basis so I could not acquire health benefits through work, and no insurance provider in the individual market would cover me because I had diabetes. So once again, I signed up for student health insurance, ensuring there was no $1,000 prescription cap. But for some reason, this new insurance provider did not see diabetes supplies as medically necessary so instead of filling them at a pharmacy, I had to pay for my test strips and lancets out-of-pocket and then be reimbursed. It took them three months to reimburse me the $500 for a one-month supply. They wouldn’t let me fill a 90-day supply so I asked my endocrinologist to prescribe the same amount for 30 days (luckily, I had an awesome doctor).

But within six months, this insurance ended. My employer still wouldn’t cover me so I opted for the high-risk pool plan. Out of all the insurance hassles I had to deal, this was by far, the easiest, but there was still a $500 deductible, and they didn’t process my first premium check until three months later, meaning I actually overpaid them since I thought they had lost my check.

Even though I currently have employer-sponsored insurance, the hassles never end. Presently, I’ve been going back and forth between my doctor’s office and insurance company because (1) they wouldn’t fill my 90-day supply of test strips and lancets unless I completed a mail order, (2) for some reason, lancets are considered a tier 2 prescription even though my co-pay actually cost more than my lancets, and (3) my test strips require an additional prior authorization from my doctor because the quantity is over the “limit.” I’m just thankful for the first time in four years I don’t have to provide evidence of “continuous coverage” so that the insurance company will cover my diabetes supplies. Before, without “continuous coverage” (which meant requesting a letter from a previous insurer, which then took a week to mail out, and another week to mail back to my current insurance – we’re in the electronic age, right?), I would have to wait six months to a year before my diabetes supplies would be covered.

I have to admit if I didn’t have diabetes, I would be one of those “young, healthy” people considering opting out of health insurance. Health insurance, even with all the propaganda, is still expensive. My disease is costly, but I need insulin to survive. I am stuck in a vicious cycle, and with all the nay-sayers spouting about how I’m bringing the system down, costing “healthy individuals” money, I worry about where my coverage will be in five years.

And that’s all I need it for. I never get sick. I never go to the doctor except for annual check-ups, and even then, I regret it because primary care physicians are so overworked, I end up waiting for hours and then they forget my name and my case as soon as I leave. When I call again for a referral or advice, they say I need to make the time to come in again. I’d rather just see my endocrinologist for all my health care needs. And sometimes, I can get away with that. But most times, I just avoid the doctor.

It seems everyone is getting sick this year. My boyfriend has been sick three times. I used to work in an office cubicle surrounded by coughing and sneezing every week. I’m diabetic. I’m supposed to be more susceptible to illness. But, knock on wood, I haven’t even come down with a minor cold. I’m thankful, believe me. I’ve had enough medical ails to last me a lifetime. I’m not saying I’m a representative of the general population, but shouldn’t something be said of the fact that because I have a chronic condition, I take better care of myself and cost the system less (if you subtract the ridiculous, overpriced cost of insulin and test strips)?

Even though I now have employer-sponsored insurance, I am thankful that this no longer limits my job prospects. Under the Affordable Care Act, insurance providers in the individual market can no longer deny me because I’m diabetic or refuse to cover my diabetes supplies for nine months to a year because I’m too “expensive.”

It’s one small victory, so for the time-being, I am merely a mislabeled diabetic trying to navigate this health care maze.

One thought on “Rising Health Care Costs: The T1D Label

  1. Pingback: Happy Anniversary Sugarcoated! | Sugarcoated

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