We can’t go back to the dark days of discrimination based on a pre-existing condition

As the mother of a little girl named Haven who was born with half a heart and as the CEO of the company responsible for Haven’s health coverage, we are speaking out to say we must not return to an era when it is legal to discriminate based on illness.

The Department of Justice earlier this month told a federal judge that the Affordable Care Act’s provisions for patients like Haven — the protections that have made it possible for millions of Americans to obtain and keep health insurance — are unconstitutional.

ADVERTISEMENT

If the DOJ is successful in its extraordinary challenge to federal law passed eight years ago, Americans who have experienced cancer or diabetes or depression, or for that matter any chronic ailment, again will fall under the shadow of “pre-existing conditions” – a dry term that doesn’t do justice to what most of us regard as simply threads in the tapestry of a long lifetime.

And then there are the children like Haven, who have not yet lived a long lifetime.

At 20 weeks an ultrasound technician did the standard in utero full scan of Haven, a moment of joy and excitement for most parents. The curve of her profile, her little toes, her delicate spine – they all came into focus for the first time on that black and white screen.

And her heart. It was beating, there was her perfect left ventricle. But it was so hard to take a picture of the right ventricle. Maybe it was the ultrasound wand? Maybe it was the position of the baby? No.

It was hard to take a picture of the right ventricle because there was no right ventricle. Haven was diagnosed with pulmonary atresia/hypoplastic right heart syndrome before she was even held in her parents’ arms. She was born with a pre-existing condition.

Since her birth in March 2010, Haven has had three open heart surgeries, her tiny sternum cracked open for each one. She would have died without any one of those surgeries.

Haven had weekly physical therapy and nutritional therapy for the first four years of her life. She needed help to learn how to swallow, how to crawl and walk.

She had unexpected readmissions to the hospital for infections and complications, each one terrifying. She will be on medication all her life. She still requires physical therapy. She may require further surgeries, which will be terrifying also, each one a shock, but not a surprise. There is no cure, yet, for a child who is born with half a heart.

Haven was born the year the ACA went into effect. Every step of the way, she was covered by health insurance. Her family worried desperately about their little girl – but not about going bankrupt.

At 8 years old, Haven is a vibrant, gifted child who has a luminous smile, plays school with her little brothers, choreographs her own dances to Taylor Swift, and gives giant bear hugs.

She is also a small, living metaphor for the bitter irony of any debate over pre-existing condition protections.

We live in a time of scientific miracles, medical advancements that can strengthen the hearts of newborns, battle cancer into remission and allow astonishing longevity. And yet we are having yet another political debate about a policy that would restrict access to medical care for millions of Americans.

What kind of society punishes any of us for the random cruelty of disease or misfortune? Surely not ours.

The Department of Justice should reconsider its position. Congress cannot stand by and watch silently as these bedrock protections are threatened.

It has been heartening, in recent days, to see Democrats and some Republicans speak up in defense of this most American principle, and we urge both parties to unite behind it.

It’s time to put energy toward fixing the ACA’s problems, not undermining its successes. Stability is desperately needed in the national market today, just a year after the turmoil of the last battle in Congress over repealing the ACA. Committing unequivocally to pre-existing condition protections would be a fine step toward that stability.

Massachusetts, admirably, protected patients with pre-existing conditions long before the ACA and has vowed to maintain those protections in the future.  That would shield Haven from discrimination, as long as she stays in her home state. All Americans deserve the same, no matter where they live.

There is a fundamental truth at stake: Whether we are healthy or sick, we are all created equal.

More than 52 million people, according to some estimates, have pre-existing conditions. It’s not surprising that more than 70 percent of the public believes it should be illegal to discriminate based on these conditions, according to the Kaiser Family Foundation. Until this month, that included President TrumpDonald John TrumpGrassley: Dems 'withheld information' on new Kavanaugh allegation Health advocates decry funding transfer over migrant children Groups plan mass walkout in support of Kavanaugh accuser MORE, who has said repeatedly that coverage of pre-existing conditions is essential.

We agree. It’s time to stop debating this.

CEOs of health insurance companies don’t want to keep refighting the same old battles. We want to focus on providing affordable, quality health care. And we want to stabilize the current system, find solutions that can lower premiums and increase choices for consumers.

Parents want to care for their children, who deserve futures defined by their hopes and dreams, not their ailments.

In Boston today, there’s a little girl who has the biggest heart in the world, even if it does only have one ventricle.

Molly Goggin Foley is the mother of a child born with hypoplastic right heart syndrome and a member of the board of Mended Little Hearts, which aids families of patients born with heart disease. Andrew Dreyfus is president and CEO of Blue Cross Blue Shield of Massachusetts, which provides health insurance coverage for 3 million people, including Haven.