• Sara Steines Newstead

For Henry

Updated: Oct 27



In 2009, I was working in the US Senate, speaking with thousands of Americans about what they needed most from healthcare, which often stemmed from what they feared most. I have heard countless voices crack and fade away as they describe the pain and helplessness they felt because they or a loved one could not get or afford needed medical care.


In 2009, there were caps on annual and lifetime limits of coverage, starting at $1M/year. Need care that exceeds your cap? Best of luck to you. Need basic preventive care, like cancer or depression screenings, or vaccinations? You’d pay out of pocket. Struggling with opioid, alcohol, or other addictions? There was no guarantee of coverage.


In 2009, it was legal to deny coverage to people based on “pre-existing conditions.” These can be life-threatening medical conditions like heart disease, cancer, diabetes, or asthma. These can also be diseases that are so common, they seem universal: teenage acne, painful periods, chronic headaches, heartburn. Pregnancy used to be a pre-existing condition. Plus, it was legal in 2009 to charge women more for health insurance.


It’s easy to forget the urgency our nation felt in 2009 to reform our health care system, and the fear and frustration felt by so many of us who were at the mercy of big insurance. The Affordable Care Act (ACA) changed all of this.


Fast-forward ten years to 2019, when I became a mom once more, to Henry, and the ACA took on a whole new meaning for my family.


Henry arrived on this side of the world with a formidable list of diagnoses and medical needs. He spent the first few months of his life in and out of the Cardiac Intensive Care Unit, surviving reconstructive open-heart surgery, failure to thrive, and a serious viral infection. He still works every day with therapists to strengthen his body and re-learn to eat. He sees fourteen specialists to get the help he needs to make sure he is growing and developing as a healthy child would. The cost of his medical care for his first year of life is in the millions.



My husband and I are not millionaires. But we did not have to worry about whether we could afford the care Henry needed. It was not because we were particularly virtuous, frugal or planful. It was because we had patient protections via the ACA, good health insurance and Medicaid supplemental programs, which were available to us because of Henry’s specific medical needs. Combined, these safety nets made sure that our family could focus on Henry’s health and safety. We did not have to worry whether we’d lose coverage. We did not grapple with unfathomable choices of which medical needs or prescriptions he would receive, and which were too expensive for us. We did not fear going bankrupt due to medical bills.


The first months of Henry’s life were – thankfully – atypical. The vast majority of children will not spend their first months in the hospital, and Henry is expected to lead a long and healthy life. In other ways, however, Henry’s experiences are the norm. Henry now has multiple pre-existing conditions, from the Down Syndrome he was born with, to the patched-up heart he earned at three months old. Over 150 million Americans have pre-existing conditions. That’s one out of two of us. One out of two of us whose physical, financial, and emotional well-being is directly improved through the Affordable Care Act.


The ACA is one of the reasons that Henry and my family have bright futures ahead of us. When you vote on November 3rd, please think of Henry. Think about the one in two Americans who have pre-existing conditions and need protections to continue.


Let’s not go back to 2009. Let’s elect legislators who understand that improvements must be made, but not at the expense of basic protections that meet the needs of so many. Let’s look forward. For Henry’s sake, for all those who we love, and for ourselves.


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