Today’s word is panicked. (Poop. Vote just passed in the House to overturn Affordable Care Act and moves on to the Senate). Panicked describes perfectly how I feel for the millions of people who may lose health insurance, primarily women and children, with loss of expanded Medicaid and potential to be denied health coverage for those with “pre-existing conditions.” Even with the Upton proposal as an attempt to cover people with pre-existing conditions as I can glean, coverage would vary state to state and people would need to meet all these conditions to access the funding:
To qualify for assistance under the Upton proposal, a person would have to live in a state with an approved waiver, have a pre-existing condition and be uninsured because of a failure to maintain “continuous coverage.” (New York Times, 05/03/2017)
Until you know or can imagine what it is like to have a child with a life-threatening illness that requires long-term care, and then imagine what that child faces as they grow into an adult and are denied healthcare coverage because of suffering they went through when they were a toddler through no fault of their own, I don’t think it is easy to see beyond the rhetoric and the numbers. If I had had to choose whether my child was to live or die because expanded Medicaid did not cover us, I honestly don’t know if I would be alive today.
(Even though my family’s ordeal happened before ACA, we benefited from expanded Medicaid thanks to SCHIP legislation for children signed into law 2005. And I continue to benefit today with subsidized premiums from ACA as a self-employed supporter of two people).
As far as numbers, I did a little math on the $8 billion in the Upton proposal to cover pre-existing conditions. One child’s two-year course of cancer treatment in the US runs approximately $2 million. There are $1,000 million in each billion. This means 4,000 children could have their treatments for cancer covered. Each year in the US, 15,780 children are diagnosed with cancer requiring treatment at our nation’s children’s hospitals. That is cancer alone. Never mind all the other pre-existing conditions a young person can face or be born into.
It feels like the worst kind of classist society to think that unless you happen to be one of the extremely few parents who can throw millions from your personal pocket to save your child, you would not be able to have subsidized short-term housing to stay near your child during long hospital stays like I was, and would be barraged with a steady stream of bills you cannot pay, leaving you in bankruptcy.
If you want more of my personal story, click on this link and scroll down to “Meet Carli.” Mine was one of the first entries into the hospital’s Story Project a decade ago and they unbelievably continue to have it on their page. Praise be that she is now growing into her full potential as a wonderful, brilliant human being, just inducted into the National Honor Society at her school last night, playing saxophone in jazz band, about to take flight in a year high school exchange outside the US, with a long-term eye toward contributing on a global level to society in some way in science/medicine. So many people came together to make opportunities available for her growth and survival, that I can never thank them or even know them all. But I see her giving back in equal measure. This is what the world misses out on when a country’s healthcare is not funded.
I watched Jimmy Kimmel’s powerful plea on healthcare as he recounted his personal children’s hospital story this week, and I was brought right back to that emotion of shock, overwhelm and helplessness any parent feels while their child suffers and undergoes major surgery or life-saving treatment. My heart goes out to his family and has never stopped sending loving thoughts to all families facing this kind of hardship. As he said through his tears, “We need to care for each other.”