Health care reformmust include preemies
I’ve always believed that America has the best health care in the world, but I never believed that I would need to make extensive use of it. That all changed when my wife gave birth to 1.5-pound triplets at 24 weeks.
In our yearslong fight to keep our children alive, we were constantly amazed both at what modern medicine made possible and at how fragile human life is. Medical science was unable to keep my son Raymond alive beyond one week. My son Daniel came home after three months in the Neonatal Intensive Care Unit (NICU). And my daughter Sofia, after enduring several surgeries, came home after eight months on a ventilator and trach, requiring round-the-clock nursing care for the next four years. Three major surgeries after that, she finally breathed through her mouth and her nose.
The fact that we had two survivors was a miracle. The fact that private insurance covered the almost $10 million total bill was a miracle as well. Our insurance was provided by the largest hedge fund in the world where I worked. Its lack of limits was due to the generosity of its billionaire founder. It was not typical health insurance.
Every year, 15 million babies are born prematurely around the world. Whether they live or die depends far too much not only on where they are born but on the ability of families to access care.
In the U.S., most insurance has gaps and limits in coverage that you don’t learn about until you or a loved one are sick. We spoke to families whose insurance didn’t cover nursing and where the parents had to both be nurses and somehow work full-time jobs. We spoke to families with limited choices in hospitals, who had large coinsurance or low coverage limits. Their children could not receive the best health care in the world because even with insurance, they couldn’t afford it.
Years later, I was considering an opportunity in the UK. Sofia still required nursing and still had surgeries to undergo. While speaking to the head of benefits at a major bank, I tried to probe and find out the limitations in their insurance. I might as well have been speaking Greek. The concept that children could not receive the care that they needed was unthinkable due to their National Health Service and supplemental private insurance.
One in 10 babies are born prematurely, so more and more Americans will need similar care to my children. They should be able to get that care without risk of ruin. As the incoming Joe Biden administration evaluates a public option, they should pay close attention to the needs of these preemies and their families. They should go further than the Affordable Care Act to provide for the needs of these smallest Americans.