My Horrific Nightmare – America’s Nightmare
The year is 2008 and I wake up to find myself in a horrific nightmare. I am in a hospital room hours from home and my toddler has brain cancer. I would never have imagined this being my life. At this point, just a few weeks in, I thought everything unimaginable had been done to my child; she was tied down and poked numerous times, her brain was cut open multiple times and she had been sedated more times than I could count. Sadly, this was only the beginning of the unimaginable things she would endure in her short life.
Our life had been swept away into a hospital room for the past month. We were becoming acclimated with the quarantine life. I was busy entertaining my toddler who was very tired of being trapped in her hospital bed. On the TV was one of those morning talk shows and the conversation caught my ear. They were interviewing a family who had gone into medical bankruptcy because they had exhausted the lifetime maximum of their medical insurance policy.
Life-time policy maximum
The words rang in my ears like tornado sirens. In a panic, I called my case manager and she tried her best to assure me that we would not reach that maximum, but I was doubtful. I had a two-year-old with brain cancer and her journey had only just begun. I had lost track of the hundreds of procedures at this point after weeks in the hospital. Everything I knew and trusted was upside down. Would we go bankrupt on top of everything else? I pulled up our medical insurance policy again and studied it inside and out.
Not only was I fighting for my child’s life I was also fighting for my family’s security. I was the insurance policyholder and toddler Ava’s preferred caregiver. As I was reading the policy, I also came across the term pre-existing condition. My head was about to explode as the reality set in that I could never lose or change my job because my child was uninsurable due to her pre-existing condition.
In the years between 2008 and 2009, I spent countless hours fighting to get Ava’s care covered. Every single thing from MRI’s to hearing tests required hours of emailing and calling to get them paid. On top of working full time (sometimes in the middle of the night) and taking care of a very sick child, I had to become a medical insurance expert.
Our medical insurance journey was a living nightmare! An unexpected turn was that my employer decided to change insurance carriers in 2009 so we were able to start a new life-time policy maximum. This was a massive blessing because Ava’s stem cell rescue treatments in 2009 were estimated at nearly one million dollars, which was the policy maximum. The downfall was I had to start all the phone calls and emails over again with the new company.
Besides Ava ending treatment late in 2009 the next best thing that happened was the ACA (Affordable Care Act) passed in early 2010. From 2010 to 2017, even after Ava’s 2016 relapse I only made a handful of phone calls to the insurance carrier. No more calling, writing letters, and begging for basic medical care needs to be covered.
This isn’t political, it is PERSONAL!
It is MY personal story and my outright plea to everyone to put aside all the propaganda just for a moment. This story is one of human needs. In our ever-changing and advancing society, we should always have the option to purchase affordable healthcare. We should also have access to health care that works for us, not the other way around. In 2008 and 2009, I was owned by the corporate medical industry. I was a slave to my insurance because of terrible corporate insurance clauses like lifetime policy maximums and pre-existing conditions. The ACA freed me and after 19 years, I was able to leave my job and care for Ava in her final year of life. That is what the ACA protections afforded me.
While the ACA is not perfect it is has been a success in many ways. Besides millions of American’s obtaining health insurance. The ACA also requires insurance companies to spend 80% of premiums on medical care. Imagine that, a medical insurance company spending money on medical care. People often fire back about the high insurance costs after the ACA passed but that is a misdirected frustration. We need the ACA to regulate the extremely high costs in the medical industry MORE not less. We also need to address low wages and high inflation increases in our country.
Drew Desilver (Aug 2018) explains that for most U.S. workers, real wages have barely budged in decades.
But that is another can of corporate America worms…
Back on track, If the ACA is repealed, 29.8 million people will lose their healthcare and 1.2 million jobs would be lost. During the current unmanaged global pandemic and economic crisis, life and full economic collapse are literally on the line for millions. Many of the small business / self-employed entrepreneurs that have been fighting to stay open during the pandemic would lose health care protections and benefits without the ACA. A report from early 2017 by the U.S. Department of the Treasury found that the ACA marketplaces have been instrumental in helping small-business owners access coverage.
One week after the election, the Supreme Court will look to vote on the ACA. By sharing my personal experience, I hope that it sheds some light on how very important the ACA is. Instead of picking sides, or picking fights please focus on the “WHAT”. Millions of Americans rely on the ACA and our country can’t afford another hit against humanity.
Trust me, good health is NOT a guarantee!
I pondered on whether to post this here because of people’s insensitive behaviors but this is a huge part of our story. So today I put on my thick skin and pulled up my big girl panties. We experienced horrific things and in the middle of it all, we were forced to battle insurance and face economic destruction. In 2009 we walked away owing over $30,000 in out of pocket expenses, even after paying everything we could as we went along for two years. We paid on that for the next seven years without getting ahead because every year there were thousands of dollars in new expenses for follow up care. Even with all that I cannot imagine the devastation had we lost our coverage or hit the out of pocket maximum. Prior to the ACA, this was many American’s reality. We cannot afford to backtrack, not even a little.
That’s all. I could go on about this, but if I haven’t gotten through by now, it ain’t gonna happen…
Be real, be kind, and seek the truth!
