My last couple years as a child health advocate in Iowa were before, during, and right after the passage of the Affordable Care Act (ACA). Though I worked on kids’ health issues, specifically Medicaid and the Children’s Health Insurance Program (CHIP), I had of course heard many, many stories insurance companies denying private coverage to people, adults and kids, denying coverage to people for the very things for which they needed coverage — their pre-existing conditions.

Sure, they weren’t always denied coverage flat out, sometimes they were priced out of it. One dad, a farmer, told me that even though his child was eligible for affordable and good coverage through hawk-i (CHIP in Iowa), he wouldn’t put his daughter on it because if they weren’t financially eligible in a year or two, due to a good farming season, he knew her asthma, a pre-existing condition, wouldn’t be covered on the individual market. It was a risk the dad, who couldn’t easily afford the private coverage for her even then, wasn’t willing to take. She wasn’t enrolled in CHIP even though it would have saved the family hundreds of dollars a month, because back then, denying someone, even a child, coverage for their “pre-existing condition” was allowable and commonly practiced. If she needed private coverage again, her asthma wouldn’t be covered. One uninsured trip to an emergency room for an asthma attack, could have put the family in real financial danger.

Another story I remember well is the woman who came to the state capitol to advocate for better health care policies. She had had recurring breast cancer and then lost her job. The only plan she was offered on the private market would insure her from the neck up and from her thighs down. None of her major organs were covered. Only her arms, legs, and her head were insured. She was completely terrified. She told me she would was afraid to be without coverage for the cancer especially since she was a mother of two young children. She didn’t want to die and leave them motherless.

Those are just two of the stories, among some from my own family, that I thought about when the ACA passed and excluding people on the basis of having pre-existing conditions became disallowed. It was a joyous, hopeful time. People were excited to finally gain access to health coverage, to start businesses, to change jobs, to go back to school, to save money. Under the ACA, children under age 19 were some of the very first to benefit from the prohibition of the pre-existing condition exclusions. That policy went into effect September 23rd, 2010, six months after the law was signed. Though it benefitted many children, there were insurance companies who immediately stopped selling single plans to children in order to avoid covering kids with what insurers saw as pre-existing conditions. This was infuriating and seemed to be in defiance of the law. It was a precursor of the battles to come.

The ACA has withstood many challenges at the state, local, and federal levels in court, and from within Congress. While preserving the bulk of the ACA, the Supreme Court decided the mandated Medicaid expansion of coverage was “coercive” and gave states the option to do it, leaving millions and millions of people without that benefit in states that haven’t yet expanded. The Obama administration defended the law time and again, and it held as the law of the land in courts of law. Last summer Republican members in Congress tried numerous times to repeal and replace the law, but were unsuccessful when people around the country fought back. Then came the tax bill in late 2017. In that bill, the financial penalty within the ACA’s mandate to have insurance was removed starting in 2019. Following that, a lawsuit was filed in Texas in early 2018 declaring the whole ACA unconstitutional, based on the repeal of that monetary penalty.

Now comes the letter from Attorney General Sessions to Speaker Ryan saying the Department of Justice (DOJ) will not defend the individual mandate in court and will also argue that without the individual mandate, the pre-existing protections within the ACA are also unconstitutional.

Pre-existing conditions, those health issues that start before one’s health insurance benefits are in effect, some of us know so very well, include an expansive list. In terms of children, think of every child you know who was in the NICU at birth, who has asthma, maybe takes ADHD medication, has juvenile diabetes, childhood cancer, developmental disabilities, or cystic fibrosis. Those are the kids who could lose coverage for those specific illnesses, or total coverage, once again. They could lose their medications, therapies, treatments, and hospital care. Those are the kids whose parents are terrified right now, even though this case could take a long time to be resolved in the courts. These are the kids, millions of them, this administration will not defend.

No family should have to go through this fear again. After all they went through to eliminate the pre-ex barriers, and after all families did to protect themselves last summer and fall against the attacks on the ACA, no one should have to worry about this again.

And yet, here we are.