From the archives …
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Seven years ago I was in a room in Tampa General Hospital. I was not having a good day. I was in pain. I could not keep food down. I had periods of confusion. I was scared. I did not know, nor did my caregivers, if I would ever get better enough to even be able to be considered for the liver transplant – the only intervention that would save my life. It really was a pretty lousy day.
Sandra left for the night, and there I was again with my ICU nurse in and out, my television, and my mind. I’ve always been a political junkie and the topic of the day on the news was whether or not the Affordable Care Act was going to be past that day. I had a pretty good idea as to what the plan was, but the conversations were coming at a less then great time in my life. So, that evening and night, having nothing else to do but hurt, vomit, and worry, I dove into what this legislation was all about. And what I discovered was that it was about people – not just sick people like me, but all people. Having spent my professional life working in the health care world, and then being served by those in that world, I was used to thinking about insurance in the context of sick people…I really took the concept of insurance for granted. As I listened to the political give and take I learned about the realities of health care finance that I knew from the very narrow context of a pediatric hospital’s administrative and budget needs. But as my nurse came and went, as all the ICU machinery alarms reminded me, and my inability to get myself to the bathroom helped me to understand that what we are talking about with health care insurance is not simply dollars and cents, but the ability to share the wonderful, almost miraculous outcomes that medical technology can offer those of us who live in this country. I had yet to face the financial realities of my own disease and needs, but I knew they would be substantial. I got wondering what my insurance was going to say about my need for transplant. Then I got wondering what insurance would do for me if I finally received and survived my transplant.
As I listened, I learned that the Affordable Care Act mandated ten basic health care tenets. These included:
In addition, the ACA would allow each state a three year plan of federal funding for the development of state specific health care plans through Medicaid Expansion, the ability for parents to keep their children under their healthcare plans until age 26 allowing young adults a head start on their lives, and very importantly to me, the ACA prohibited insurance providers for discriminating against folks with pre-existing conditions. That last was very important to me, obviously, and my path was turning into a lifetime medical journey. But then it dawned on me that this was far more important than just me – every newborn in every NICU across this land would be discharged from those hospitals with pre-existing conditions. That indeed those with heart conditions and lung conditions would spend their lives with those. And the older kids – those with cancer, kidney disease, immunology problems…all those who have pre-existing conditions. The more I learned that evening, the more I realized that I, and more importantly our country, had a lot to gain by this clearly important legislation.
So as that evening moved through the laborious legislative process, I became more focused on that than how I was feeling. And as the vote proceeded, watching became almost like cheering for one team in a close basketball game. And at the end of the day, as they say, the Affordable Care Act passed – it was a close vote – but it passed. And I remember having a sense of relief. And I remember a strong sense of pride I had that we lived in a country that cared enough for it’s people to provide this kind of legislation. I remember saying to my nurse, “this is a proud moment for this country”. I watched as the President signed this legislation surrounded by those who would mostly benefit from his landmark work. And I had a far different understanding of what insurance really means.
So, over the past seven years, I’ve enjoyed each day with my transplanted liver and a second chance at life. I know well the dollars that this new life cost and costs. Without insurance I’d be in a whole lot of trouble…no, check that, I would be dead. And over these years our living situation and jobs changed resulting in different insurance plans…but I did not worry because I knew I could not be denied coverage, or penalized, because of my pre-existing conditions. And I watched in partisan amusement as those whose political fingers had been burned by the ACA kept trying, almost weekly, to repeal this law. I heard all the reasons. I heard some state governors take the Medicaid expansion while others did not. I heard success stories, and I heard real challenges. The ACA was and is not perfect…it needs to be improved. But I could never figure out why those against it could not work to fix it, rather than tearing the whole thing up. And then came the Presidential election cycle with a pantheon of conservative candidates repeating the mantra that Obamacare had to be repealed…and eventually, they through in the cookie of replaced. Health care had become all about politics and nothing about people.
So, today, on the seven year anniversary of the ACA being signed, I am watching TV from Washington again. The vote to replace and repeal the ACA is scheduled for today. And it is indeed all about politics and not about people. You remember those 10 health care tenets? They want to be torn apart. The thinking is that men shouldn’t cover women’s needs, women shouldn’t cover men’s needs, I’m not sure who the hell is supposed to cover the needs of children. End of life care will not be as readily available. There is not a call from business cooperation between the health care, pharmaceutical, and insurance industries. Mental health services and addiction services will be come less available (although this same group has made it easier for those with mental illnesses to get firearms). The mandate for coverage needs to go away, or so some say. It’s not about access to health care, it’s now about whether or not you are going to afford health care. Emergency rooms are going to be swamped with sore throats. Rural hospitals are going to close. Pro-life folks will stand by patting themselves on the back while babies suffer and die. There has been no move whatsoever to improve what the ACA offers – that would be thinking about the people. This is all about politics, about the names of Trump and Ryan, and groups called the Freedom Caucus. It is about negotiating with what people need to live healthy lives to get political revenge. Will this impact me? I don’t know…like I didn’t know seven years ago. Will it impact those children in pediatric hospitals across the country? Yep. Will it impact the most vulnerable who have limited access to quality care regardless of how it might be paid for? Of course. Once again, politics and party have taken the priority from the people. My pride? Gone, replaced by cynicism. My hope for others facing my history? Deeply dented. If our political folks continue to play games with people’s health care, people will die. And that ain’t right.