Photo from the WWII diary of Louis Martin Abernathy
"Dear Dad. Today I found out that my health insurance benefits broke up with me. It seems that mediocrity has won. For now anyway. Love, Peggy Marie."
When I was a little girl, my dad used to kneel down when he talked to me. I think he wanted me to see him eye to eye to help me understand that I was important, that I mattered even though I was so tiny and could count my age on one hand. So many memories of a father who often told me, "Peggy Marie, you can be anything you want to be." And when, as a young adult, I told him that I had been diagnosed with Type 1 diabetes, he grew quiet. Later, he took my hand and said, "I'm here for you." He had no idea the impact or implications this condition would have on me. None of us did.
I knew from the beginning that my diabetes journey was going to cost me a lot of money. And early on, my instinct told me that the cost to simply stay healthy was only the tip of the iceberg. I quickly realized that if I got sick, diabetes related or not, I would be walking a precarious financial tightrope and disaster that was predicated on my inability to purchase health insurance at any cost.
If you can believe this, early into my diagnosis, I was told by an employer (who didn't offer health insurance to their employees) that, "You should quit your job and go on Medicaid." Really. REALLY? Really.
So, how did my descent into the land of the uninsurable happen? I will invoke brevity to reveal the timeline and show you my 26 years of erosion.
•When I was diagnosed, I was young and uninsured -- I remained uninsured because I could not afford to buy health insurance.
•My income increased so I looked into purchasing private insurance and was told that they would cover me but my diabetes supplies or diabetes issues wouldn't be covered until after the first six months. I could not afford my diabetes supplies as well as expensive insurance premiums for six months, so I continued my uninsured status.
•I obtained a job that didn't offer health insurance and so after placing myself on a waiting list and after a several month waiting period, I was able to buy the expensive State Major Risk plan -- I could only afford it for myself, not my husband.
•Obtained group insurance through a new employer but was again told that they wouldn't cover my diabetes supplies for six months.
•Offered private group insurance via my new employer. I'm in! As long as I don't leave or lose my job.
•COBRA was/is the law of the land. Eighteen months of post-employment insurance that I was able to purchase at an astronomical cost. Eighteen months. Dear God, let me find a job before that deadline.
•Affordable Care Act. Is this a dream? Is this real? For all the little kids, their parents, and adults with Type 1 and Type 2 diabetes, we are collectively holding our breath. The vulnerability of this law is palpable and precarious. We must not fail each other.
In the beginning, my diabetes was my private struggle. I rarely talked about it, even to my family. Before insurance coverage, my diabetes treatment was compromised solely due to the fact that I couldn't afford my supplies just to stay healthy. But once my access to health insurance opened up, I was able to have better control that resulted in me feeling so much better. And it wasn't until I landed a job with health benefits that I could even fathom going on an insulin pump and eventually obtain a CGM (Continuous Glucose Monitor). Both of these devices have helped to normalize my everyday management. For me, these devices are miraculous and they allow me employability, health and a more normalized life.
And do you know that since that time, I have never been hospitalized or compromised by my diabetes? I'm healthy because I am now able to take care of myself. It's as simple as that. My co-pays are my biggest expense.
If he were still alive, I wonder what my Dad would think about the fact that, as a WWII pilot and Navy Cross recipient, his brave and selfless efforts to defend and protect us would be tainted by the fact that the very country he had risked his life for, day in and day out for two years, had pretty much given his little girl the finger and turned its back on her.
"Dear Dad. Yes. That happened and I'm sorry. I'm trying so diligently to be brave and fight the good fight. I trust you're proud of me, Dad."
"A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history." Mahatma Gandhi