Discussion of news topics with a point of view, including narratives by individuals regarding their own experiences

More than 130 million Americans have preexisting health conditions. One of them is my daughter, Claire.

Claire, at age 12, is turning into a teenager who wants to get her way. She loves Disney, swimming, flipping through magazines and books, and anything chocolate. She was also born with a list of medical conditions longer than most children’s Christmas lists. Among them, issues with her heart, autism, epilepsy, asthma, very low muscle tone and differences in the way her brain was formed. All of these conditions go by another name, easily recognizable by every American: preexisting conditions.

Claire was born in 2006, before the Affordable Care Act was passed and before protections for people like her — who had the bad luck to be born with conditions that are expensive to treat — were implemented.

In 2006, having a child born with preexisting conditions was terrifying.

(Courtesy of Jamie Davis Smith; Lily illustration)
(Courtesy of Jamie Davis Smith; Lily illustration)

I was, of course, worried about Claire’s health and her future. It was notable to me that I could not find any children older than Claire who were like her, very likely because the treatments used to save Claire’s life when she was a baby did not exist even a decade before her birth. But it was reassuring to know that the lifesaving treatments Claire needed to stay alive existed and were readily available.

It was chilling to realize that if Claire reached her annual or lifetime cap on care her insurance company could prevent her from accessing the care she needed as soon as the cost of her life reached the arbitrary value they had placed on it. Claire started life as a “million dollar baby,“ racking up more in medical bills during her first year than I had spent on a lifetime of care.

She spent weeks in the neonatal intensive care unit, had heart surgery before she was six months old, was constantly monitored and had countless visits with specialists weekly to address the growing number of concerns with her health and development. Each doctor’s visit, therapy session, surgery, hospital stay and prescription felt like a mark ticking down the days until Claire would not be able to receive any kind of care whatsoever.

Claire’s father and I are both professionals and are comfortable financially, but we knew there was no way we could continue to afford the care required to keep Claire alive when she reached her caps on care or if my husband ever lost his job and the health insurance that came along with it.

Then, when Claire was 4, the Affordable Care Act was passed. The tremendous comfort and peace of mind that came with the ACA being signed into law is impossible to overstate. I knew Claire would still face obstacles, but they would not be because she couldn’t accesses the care she needed to stay healthy, happy, survive and thrive.

It was as though the price tag Claire’s insurance company had placed on her head the moment she was born was torn off and as a country we agreed on what I had known all along — my daughter’s life is priceless and she deserves a shot at reaching her full potential no matter what the cost.

Never again, I thought, could my daughter’s very right to access lifesaving treatments be denied. Never again could a bureaucrat trying to turn a profit decide that my daughter was just too expensive to keep alive.

Today, I know that I was wrong. The ACA has been attacked more than 70 times, and it is clear that the GOP will stop at nothing to repeal the law we rely on. We are ending the year with another attempt to gut the ACA and remove the protections it provides for Claire and millions of other Americans with preexisting conditions.

On Dec. 14, a federal Judge in Texas ruled that the Affordable Care Act is unconstitutional because of a recent change in federal tax law. If not overturned on appeal, this ruling would return us to a time when having a costly preexisting condition was tantamount to a death sentence for many. Activists and Americans living with preexisting conditions have vowed to appeal this decision. Nancy Pelosi, who was instrumental in ensuring the ACA passed in the first place, has vowed that Democrats will take swift action to ensure the ACA’s protections remain in place once Democrats take control of the House in January.

But we are not assured victory now or in the future. We are not safe. Claire is not safe.

It is clear that no matter how many times we successfully beat back attempts to remove protections for those who need it the most, Republicans will find a new avenue of attack.

We must remain vigilant to ensure that the most vulnerable in our society, including children like my daughter Claire, are not treated as a burden too expensive to keep alive. We must decide that health care is a right for all Americans, regardless of their background or ability to pay, and hold our elected officials remain accountable for each and every attempt to remove the protections the ACA provides.

For many Americans, this is literally a matter of life and death.

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