It is with a sad heart I report the status of the healthcare system in America as broken and with no hope in sight. When the Affordable Care Act was passed into law (and survived numerous attempts to repeal or severely limit it), I was excited. Finally! Everyone now has the opportunity to have healthcare coverage. We are finally moving towards universal healthcare like EVERY OTHER DEVELOPED COUNTRY IN THE WORLD!!!
But I was wrong! I had been misled. It is possible to have health insurance and still not be able to afford to go to the doctor and/or afford testing ordered by your doctor. Sad, but true… With copays to see specialists usually set at $50 per visit, who can afford to go? And when a test is ordered, no one can give a definitive price for it. I know one woman who thought she was being smart by shopping around for a cheaper MRI. She went to a specific facility because they quoted her the best price under her insurance. Guess what? The final price billed to her insurance company and then to her was significantly higher that what she was quoted. Upon questioning the facility, they said there were other charges applicable on top of the simple price for an MRI. Of course, they failed to mention those extras when she was shopping around. There is no system of accountability when this happens. No other business in this country could get away with blatantly irresponsible behavior. There is no governing body responsible for ensuring that patients and health insurance companies are not being bilked by providers. There are serious consequences to this lack of oversight.
I briefly knew a woman I met through my advocacy efforts. We talked during monthly conference calls and on Facebook. This past May, I got the opportunity to meet her in person at the Caterpillar Walk in New York City to raise awareness and funds for fibromyalgia. For a few short months, this free-spirited woman suffered from debilitating nausea, vomiting, and other gastrointestinal problems (on top of her fibromyalgia and other chronic health issues). Because of the ACA, she was able to afford health insurance and was finally diagnosed with clostridium difficile colitis. WebMD defines this as:
bacteria that can cause swelling and irritation of the large intestine, or colon. This inflammation, known as colitis, can cause diarrhea, fever, and abdominal cramps.
It is a completely treatable illness. There is no morally acceptable reason for an insurance company to deny treatment coverage – but hers did. She could not afford the inpatient treatment that her doctors recommended without insurance. So she did the only logical thing she could think of – she switched insurance companies. Less than a week after switching health insurance companies and finally being admitted to the hospital for treatment, she died. Allow me to let that sink in… She died from a curable illness. She died in a country that prides itself on being THE BEST in everything (even when it is not). She died where help was only a breath away. She died…
Unfortunately, this story is not unique. It happens all too often.
I am sure many of us have regrets from our long ago childhoods. Of things we wish we had done and things we never want our kids to find out about. Some youthful indiscretions can be easily forgotten while others carry a penalty that we cannot erase. Take smoking, for example. The damage from casually taking our first puff as a teenager can stay with us the rest of our lives, especially if that first puff turns into a lifelong habit. And we all know the Big C is linked to smoking. There are other consequences to teenage angst that carry serious consequences, consequences we were oblivious to at the time or simply did not care about. For those of us seduced by the lure of an eating disorder, our bodies can carry the scars for the rest of our lives. A childhood spent watching what we ate, threw up, and exercised away can lead to health problems later in life. At a time when our bodies needed as much nutrition as it could get to help us grow, we starved it down to the bare bones. Cartilage and joints that needed nutrients were denied the ability to prepare for middle age. And now, as a thirtysomething, my body is falling apart. Arthritis is wrapping itself around every joint it can, reaching out its painful and destructive tentacles. I can often be heard joking about how I have the body of an eighty year old. Oh, how I wish it were only a joke! I have had to give up activities I love to do, like crocheting and doing cross-stitch and skiing and long walks. It doesn’t seem fair that my body should be so frail. I, theoretically, have decades left to my life but I am trapped by the consequences of my ill-spent youth. How I wish I could go back to my teenage self and shake some sense into her, get her the help she was crying out for.
I accept full responsibility for what I did then and the consequences I am forced to carry now. I wish I had had the courage to ask for help sooner but I was just a child then. I could not fathom even having a future at that time. I only lived in the moment like every other foolish teenager. I wish the adults in my life at that time would have paid more attention to me and had the courage I lacked, the courage to help a desperate teenage girl lost in a maelstrom of emotions dragging her into a bottomless pit of despair. I spent the better part of my childhood trapped in a black hole, looking for hope and finding only indifference.
If nothing else, my own childhood taught me what NOT to do as a parent. No perceived stigma will ever stop me from asking for help if I see my child spiral out of control like I did.