My daughter Claire was born 13 years ago, and her birth was the result of years of planning. Planning to own a home, to be established in my career, to build up savings and to pay down my student loans.
An important part of my plan to ensure a stable, predictable life for Claire was to ensure that I had a good job working for the federal government with access to great health insurance.
But, as my husband and I quickly learned, things don’t always go according to plan. After a blissful day cuddling our newborn and staring into the big, blue eyes she shares with her father, the doctors caring for her started to raise concerns. She had a heart murmur, her head was too big, her eyes too wide-set, and she was lethargic, even for a newborn.
I had to leave the hospital without Claire, who stayed behind in the neonatal intensive care unit (NICU). Within Claire’s first few weeks of life we learned that her brain had not formed completely, that her heart was in the wrong place, her kidneys were not functioning properly and that she would never talk or walk.
While giving her skin-to-skin contact in a rocking chair by the incubator where she spent most of her days so that her body temperature would remain stable and her breathing could be monitored constantly, I made new plans. We would go to therapies instead of play groups and I would monitor her oxygen levels instead of her cooing on the baby monitor.
Luckily, Claire had one of the best insurance plans in the country. So, it came as a huge shock when I learned that this wasn’t enough to ensure she had access to the care she needed ― or to protect the stable, middle-class life we had made for ourselves and envisioned sharing with our child.
Claire was born in 2006, four years before the Affordable Care Act (ACA), which established that individuals could not be denied coverage for preexisting conditions, abolished lifetime caps on care and curbed premium hikes, became law.
While Claire was still in the NICU, with bills mounting everyday, I learned that her health insurance had an annual limit on costs and a total lifetime cap on care. I held my days-old daughter and willed her to put on weight, remember to breathe and get stronger so that I could take her home.
Eventually, Claire did make it home. We started our “new normal,” which included great joys like watching Claire sit on her own, enjoy music and laugh uncontrollably. Because the ACA was not yet law, however, Claire was one of the 135 million Americans who lacked protections for preexisting conditions and as a result was not guaranteed insurance coverage for the care she needed to stay alive.
Families like mine are living in limbo, unclear of what the future holds for their children and whether they will survive Trump’s assaults on health care.
When the ACA passed in 2010, Claire was almost 4 years old. For the first time in her life, I had the peace of mind that Claire would never lose access to the care she needs just because of the way she was born or because her parents are not billionaires. Or so I thought.
Today, Claire faces many struggles, but she is also able to go to school with her peers and eat dinner with her family every night. She loves puppets, Barbies and eating ice cream with her siblings. The ACA means that Claire has access to the care she needs to stay the happy girl we have come to love.
Now, the protections of the ACA are in peril. The fears I had when Claire was a newborn are back with renewed intensity knowing that not just Claire’s well-being but her life is on the line. We are facing the very real possibility that people like Claire, born with preexisting conditions, will lose access to the care they need because health insurance companies will no longer be required to provide coverage.
President Donald Trump has repeatedly promised to protect health care. He promised that no one would lose coverage. He promised that everyone “would be taken care of.” He promised that no one would be worse off financially. He promised to protect preexisting conditions. He lied. Trump is now claiming that he is “the person who saved Pre-Existing Conditions” through a series of tweets. He is lying again.
The Trump administration is behind these attacks on health care. The Department of Justice, under the leadership of the Trump administration, has argued in a federal appeals court that the entire ACA, which includes protections for those with preexisting conditions, is unconstitutional. A decision in that case remains pending while a lower court examines the issues in more detail.
Rather than seeking to protect children like mine as Trump would like us to believe, he is actively seeking to dismantle the protections disability activists struggled to put into place ― and which we had all expected would be permanent.
In the meantime, Trump has not put forth any plan that would “save” protections for preexisting conditions. Families like mine are living in limbo, unclear of what the future holds for their children and whether they will survive Trump’s assaults on health care.
Since Trump took office, I’ve known that it’s up to me to protect Claire’s health care. It’s up to all of us to protect health care for all Americans.
One thing I have learned clearly from being Claire’s mom is that illness or disability will affect everyone at some point. Good health is not guaranteed to anyone, no matter how carefully you plan. No matter the outcome, we must hold the Trump administration and our elected officials accountable because millions of people stand to lose their health care. Claire deserves better. We all do.
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