Op-Ed: Don’t Take My Son’s Life-Saving Health Care Away

This op-ed appeared in the February 5, 2017 edition of the Star-Ledger

As Congress inches toward repealing the Affordable Care Act with no apparent replacement, the health and lives of tens of millions of Americans hangs in the balance. My 4-year-old son is one of them, and I urge New Jersey’s four congressmen who recently voted to advance repeal to hear his story, to think about his future and to explain why they want to take away his affordable and life-saving coverage.

They are U.S. Reps. Frank LoBiondo (R-2nd Dist.), Chris Smith (R-4th Dist.), Leonard Lance (R-7th Dist.) and Rodney Frelinghuysen (R-11th Dist.).

In 2015, when he was just 2, my son Michael wasn’t doing well. He was lethargic, he was eating a ton but not gaining any weight and he was urinating excessively. Imagine our shock when we found out he had Type 1 diabetes, and was not just under the weather but nearly dead — his life saved only by the quick and decisive actions of our family pediatrician.

Before we get much further, let’s clear things up: Type 1 diabetes is not the same as Type 2 diabetes. Michael will have Type 1 diabetes forever, unless a cure is found. No amount of “diet and exercise” will make his chronic condition go away.

And no, Michael’s Type 1 diabetes wasn’t caused by him being overweight. It’s a genetic and autoimmune disease that about 40,000 children and adults are diagnosed with each year. In all, nearly 1.3 million Americans are living with Type 1 diabetes.

In other words, in the parlance of the Affordable Care Act, my 4-year-old son has a “pre-existing condition.” And he will forever.

This condition, I should note, is really expensive. Michael is kept alive by a vial of insulin, since his pancreas doesn’t produce a drop of the stuff. The insulin that flows into his little body through a mechanical pump has nearly tripled in cost in the past decade, according to the Journal of the American Medical Association.

Just last week, a class-action lawsuit was filed accusing three manufacturers of this life-sustaining drug of conspiring to drive up the costs of insulin.

Whether or not that’s true, the fact remains: This drug — and the laundry list of other drugs and supplies we have to keep to ensure our 4-year-old son stays alive — is not affordable without excellent health insurance. Luckily, we have been able to find affordable and comprehensive coverage for Michael on the ACA’s health insurance exchange.

In the past, insurers could discriminate against people like my son; their pre-existing conditions often led to higher premiums, or denial of coverage altogether. Thanks to the Affordable Care Act, that’s no longer legal.

As he gets older, and potentially faces a variety of serious medical complications from his diabetes, he’ll become a less and less “attractive customer” to health insurers whose primary concern is protecting their bottom lines. If the Affordable Care Act is no longer there to protect him from the vagaries of an industry with a long track record of putting profits before people, he will face enormous bills for health coverage. And that’s if he’s lucky enough to even be approved for coverage.

Make no mistake: Michael is not alone. In fact, over 52 million non-elderly Americans — including 1.2 million New Jerseyans — had declinable pre-existing conditions in 2015, according to the Kaiser Family Foundation.

Also unmistakable is the fact that, overall, Michael is very lucky. His parents (my wife and me) are middle-class professionals able to pay for his nonsubsidized insurance on the exchange. He’s not among the 14 million Americans — including more than half a million New Jerseyans, of whom about 100,000 are children — who have obtained coverage due to the ACA’s Medicaid expansion, people whose coverage will likely disappear after repeal takes effect.

And he’s not among the other 60 million low-income Americans (and 1.3 million New Jerseyans, of whom over 600,000 are children) on “pre-expansion” Medicaid (and NJ FamilyCare) who face grave threats to coverage, in the form of “block grants” that would lead to devastating cuts in service or eligibility as the federal government reduces spending on Medicaid by $1 trillion or so over 10 years.

As members of Congress move to repeal the Affordable Care Act, they need to be clear of the consequences. Repeal without an adequate and robust replacement will take affordable coverage away from my 4-year-old son and millions of others just like him. Putting their lives in jeopardy in order to score political points is not only a terrible way to make public policy, it’s immoral.

Our congressional leaders must stand up against this destruction.


  1. The lifetime caps can come back too. Basically republicans will make having preexisting conditions a hardship again, and legal for insurers to deny coverage, or charge a premium no one can afford. This is nothing but politics, pure greed, and selfishness. Republicans are despicable

  2. Author

    Good point re: lifetime caps – that is another huge issue for folks with chronic illnesses. Was trying to include that in the op-ed, but there are only so many words available!

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