Now that President Trump has ended his foreign policy trip, I’d like to return to something I promised regarding “l’affaire Kimmel”. If you recall, after Jimmy Kimmel and his wife had a child born with a congenital heart condition, Kimmel went on his late night show to share his story, express his gratitude, and comment on the health insurance debate.

Both Hume and Goldberg took Kimmel to task for expressing concern that “…those born with congenital heart issues like his son could be turned down for health insurance because they were deemed as having a pre-existing condition.”  Goldberg wrote: “Babies with dire medical conditions are covered by their parents’ insurance…”, while Hume, cited an article by Brian Joondeph, who also had a child born with a heart condition. Joondeph wrote:

“First, a baby born to parents with health insurance will be covered under the parents’ plan. Pre-existing conditions in this case are moot. The child can remain on his parents’ plan until age 26, something not likely to change in any replacement bill. After age 26, the situation changes, but who knows what the insurance landscape will look like in a quarter of a century?

Second, a newborn baby with a health emergency would not and legally could not be turned away from the hospital, regardless of insurance status or ability to pay. Billy Kimmel would have had his surgery even if his father were poor and uninsured.”

On the basic point that a baby with these health needs would receive treatment, Hume, Joondeph and Goldberg are right.  But, their myopic focus on that ignores the larger truth about NICU babies and health insurance.

I know this because both of my children were born premature. My daughter was not only born early, but was missing her left lung and had congenital scoliosis.  She’s had multiple surgeries since her birth. In addition to being lifeflighted on the night of her birth, she spent 3 weeks in the neonatal intensive care unit (NICU). My son, born five years later, was born even earlier, when my wife experienced preeclampsia.  He spent 2 months in the NICU.  I think I might have a richer perspective on this than Kimmel, Goldberg and Hume, because I’m pretty certain my income at the time this occurred was far below their level.  While I had a job and employer health insurance, I was hardly rich at this point in my life.

So what do these two writers miss?  Let’s start with one that many people have already mentioned–annual and lifetime limits.  When my children were born, roughly half of employer plans (including mine) had annual or lifetime limits on what the insurance company would pay under the plan. Often, those lifetime limits totaled 1 to 2 million dollars (annual limits were lower).  Sounds fine, right? Go ahead and google “NICU costs” if you want to see some stories.  The costs for a premature infant easily top hundreds of thousands of dollars in the first year of life, so that million dollars quickly becomes something you start to worry about–worrying, of course, as you are sitting next to your child’s isolette watching machines help them breathe, eat, and survive. Even families with employer plans were urged to fill out forms to become eligible for Medicaid, in case their employer benefits were exhausted–filling out those forms, of course, as you are watching the nurse take another blood draw to check on your child’s health.

What Hume, Joondeph and Goldberg also ignore is that saying your child would get care, simply means that the hospital is required to provide lifesaving care (and maybe not even that).  The obligations of a health care provider end once a patient is stabilized.  At that point, they can discharge them.  For children born prematurely, however, the need for care and the costs continue far beyond that point–physical therapy, occupational therapy, speech therapy, ongoing care for congenital heart, spine, kidney, and other conditions, pulmonary follow-up since premature lungs are not ready for breathing, and on and on and on.  Each bill erodes that million dollar lifetime limit. More importantly, some of that care will be forgone because of its costs for many families. A life saved, yet burdened with inadequate care with lifetime consequences, is something Hume and Goldberg don’t care to discuss.

Hume, Joondeph and Goldberg also brush off the costs of this ongoing care, as well as any of the NICU costs not covered by your employer plan (or Medicaid, if you qualified). Beyond just the tradeoffs families of NICU babies face as the out of pocket costs mount, there’s simply the fact that each bill is yet another strain on a family who is struggling to keep their emotional balance.

Those costs go far beyond medical costs. Living in central Pennsylvania, the nearest NICU for my children was nearly 100 miles away. Let me share my schedule in 2001 after my son’s birth. My daughter was in 3 days a week preschool. We picked her up from school on Monday and drove 100 miles. We spent the rest of Monday and most of Tuesday with my son, driving 100 miles back home on Tuesday night. We picked her up after school on Wednesday and drove 100 miles back to the NICU. We did the same on Friday. That’s 600 miles per week, for 8 straight weeks with gas prices running $1.50 a gallon. That’s hotels when we could not get a room at the Ronald McDonald House (Thank you RMH!!).  That’s food and other costs associated with being away from home. Costs go far beyond medical costs for parents of children with health problems.

And I count myself incredibly lucky.  My daughter was born in May, at a time when I was free from obligations at my university, since we had 9 month contracts.  My son was born when I was on a sabbatical, so I had far fewer work obligations. I saw the babies and families who could only visit during late nights, forgoing sleep to find time for their child. I saw the babies and families who saw each other only on weekends, because of the distance or work schedules or other constraints on their ability to visit. These challenges are not even worthy of attention from Hume and Goldberg.

Joondeph writes “Pre-existing conditions are moot”.  Really?  Yes, my children were covered under my employer plan, so having a preexisting condition was not immediately relevant for us. But, if I wanted to change jobs? If I wanted to start my own small business? If I lost my job? If I was injured and was unable to work anymore? These are the nightly worries, the 3 am wake-up call of every parent with a child with conditions like this, who don’t have the economic comforts and ideological blinders of Joondeph, Hume and Goldberg.

By narrowly interpreting Kimmel’s comments, Joondeph and Goldberg ignore the real concerns of parents of premature infants and children with serious health conditions. The ACA did not solve all of these concerns, but it lessened some of them. By removing lifetime and annual limits, the ACA helped to ease the concern that mounting costs would lead to exhaustion of benefits. By expanding Medicaid and requiring essential health benefits for employer plans, the ACA helped to expand coverage of the types of care these children need to reach their full potential, not just save their life. By eliminating preexisting condition restrictions, the ACA allowed families to consider the best way to move forward as a family, rather than staying locked in a job simply because the health benefits might be lost if you tried to make a change.

The ACA was a step forward. Almost everyone who experienced the system before and after with a child in these situations would tell you that. To return to the days before the ACA, which is what the American Health Care Act will do, is a step backward. Hume, Joondeph and Goldberg do their readers a disservice by dismissing Kimmel’s comments and ignoring the ways the ACA improved life for parents of children born prematurely or with serious health conditions.