This post is dedicated to Patricia for giving me the courage to find the words to write about a topic that goes so much deeper than just policy.
The Affordable Care Act (ACA) aka Obamacare was passed into law on March 23, 2010. On April 24, 2009, I was diagnosed with Type 1 diabetes, an incurable autoimmune disease. I must inject myself with insulin to live. Without insulin, my body goes into shock, something referred to as diabetic ketoacidosis. My organs ultimately fail, and then I die.
I was diagnosed nearly a year before the Affordable Care Act became law. I was preparing to graduate from college and start a career in psychology. I didn’t know much about the health care system in this country or the health insurance I would need to access the supplies that would help me manage this new disease. Fortunately I had started a full-time job and was able to acquire employer-sponsored health insurance.
By the time the ACA was passed, I had decided to change careers and return to school. But leaving that full-time job meant leaving behind my employer-sponsored health insurance. It would be another three years before the ACA was fully implemented. In those three years, I learned firsthand the physical, mental and financial ramifications of not being able to access the treatment I needed to manage my chronic condition.
When the ACA came into full effect on January 1, 2014, it had completely saved my life. Here are five reasons why. Continue reading
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. Continue reading
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. Continue reading
I don’t know how I ended up here.
“I submitted my payment two weeks ago. I just want my member ID cards. I’ve been covered since September 1st,” I say.
I’ve come directly from school, my backpack still attached. The insurance representative in front of me is wearing a white coat (I don’t know why). Her dark hair and pale complexion remind me of one of the robots from the movie, The World’s End.
“It takes 7 to 10 business days, sometimes more, for the initial payment to process,” she says matter-of-fact.
“But you did receive my documentation of continuous coverage?”
“Yes,” she says and then drops the bomb, “But we have a new rating system. If you don’t meet our health standards, and because you’re diabetic, you probably won’t, we don’t have to cover you.” Continue reading