It was a beautiful wedding. Our nephew Cord was marrying his longtime sweetheart, Annie. Cord is an Eagle Scout who applies his desire to serve in the Portland, Oregon school system where he works with children with emotional challenges. Annie is Development Director at a private school. Vivacious and kind, she makes friends easily. Our grandson Nico was totally smitten by Annie when he was just three years old. She made drawings for him and acknowledged his presence with the kind of authenticity that kids immediately recognize. Annie and Cord are a great couple, contributing to society in significant ways.
One thing, though: Annie suffers from lupus, a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart and lungs. It can seriously impact your lifestyle, and flair-ups can be dangerous, even life-threatening. You wouldn’t know this to speak with Annie, who doesn’t complain. When not battling active flare-ups, she is fully engaged in the lives of those who surround her.
And so I was struck by her Facebook post from last week: “I try to refrain from discussing politics on Facebook for many reasons, but everything that is going on with healthcare and the Affordable Care Act is really weighing [heavily] on my heart.”
Annie has been blessed to have private health insurance, first through her parents’ policy and then under her employer. But she empathetically cares about those who do not and, without the guarantee of coverage for pre-existing conditions, it would be “impossible for me to get private health coverage or coverage that would include any treatment for those conditions. That would be a death sentence for me. MRIs cost thousands of dollars and I have had seven this year alone. Without those MRIs I wouldn't have received the correct treatment and I could have died.”
If elements like mandated coverage for preexisting conditions, or elimination of mandatory caps are removed, even those in their twenties—like Annie—are at risk of life-altering consequences. She told me that one bout of treatment during this past year cost close to two million dollars. She reminds us, “This is so gravely serious for so many people.”
As we confront the possibility that the ACA will be repealed and not immediately replaced, the general public can fall prey to the default media narrative that focuses on numbers and trends, statistics and costs. This depersonalizes the issue for most of us, making it easier to put it aside or out of mind. Yet, the lives of Cord and Annie illustrate the human side of this overwhelming issue facing the new administration, Congress and all of American society. Annie encourages us to become informed about the issues involved in the repeal of this law: “Before you say the entirety of the ACA should be repealed and has done nothing for us, please think of me and others like me and how terrifying this is. This is real life, my real life reality.”
Let’s share Annie’s story so that no one is left exposed.