Have a Heart: Save the Affordable Care Act (by Angela Eilers)
I’m Myka’s mom. I’m just one mom of one child with serious medical complexities, but I know I represent thousands of families just like mine throughout our country.
Myka exhibiting her aerialist skills. [image description: a teenager in an aqua bikini leaps above a family backyard pool to dunk a small red & white basketball into a pool-side hoop.
Myka is our third child after a set of twins. Boy twins! I had really hoped that I would have a girl after two rambunctious boys. I am so lucky to say that came true. Myka, along with her two older brothers, are my soul. They are everything to me.
My daughter was born on a Thursday night in September of 2009, three weeks ahead of schedule, and about seven months before the Affordable Care Act (ACA) was signed into law. After having twin boys sent straight to the neonatal intensive care unit (NICU) after their birth, it was a nice change of pace to have our baby in our room to cuddle and love immediately. Myka struggled a lot those first few days and by her fourth day of life, she was diagnosed with a congenital heart defect. I had no idea what that meant for her or our family. I didn’t realize then the roller coaster ride we had just embarked on.
Myka then spent a few weeks in the NICU. I’d spend hours at her bedside missing my toddler boys at home. It was grueling going back and forth, but I knew she was exactly where she needed to be and the NICU nurses took good care of her. When Myka was able to come home, we breathed a sigh of relief and felt our family was complete.
We had orders to follow up with a pediatric cardiologist. Her “minor heart murmur” turned out to not be so minor. By the age of three-and-a-half months, Myka showed signs of failure to thrive. Her cardiologist decided she would need open heart surgery. I never knew a tiny baby could have that many tubes and wires connected to its little body, but there we were seeing it first hand.
We lived the next few months in fear. Fear of losing our baby in the middle of the night as her first surgery had not done enough to repair her cardiac issues. Myka underwent her second open heart surgery at the age of eleven months, with another stay in the cardio-thoracic intensive care unit.
At that point, I was a stay-at-home mom and my husband was employed at a company that offered employer-provided health care. We remained on his health insurance plan until 2012 when my husband was laid off. With his job went our health insurance. I was devastated. Our family viewed health care as essential as a home over our heads and food on our table. Without it, our daughter would not survive or thrive.
However, because the ACA had been enacted just a few years prior, my husband decided to start his own business. We knew we could purchase our own health care plan because the ACA guaranteed that those with pre-existing conditions could not be denied coverage.
My husband launched his business, and I’m happy to say that after almost seven years, his business is thriving, even employing several individuals throughout the unknowns of Covid. This small business has kept a roof over our family’s heads, food on our table, clothes on my kids’ backs, and an occasional trip back to the Midwest to visit grandparents.
Myka lives the life of any other little girl. She is in the fifth grade. She loves reading and is obsessed with Harry Potter. She is a Girl Scout and is her troop’s top cookie seller this past year! She performs in ice skating competitions and aerial showcases. She loves her friends, her pets, and her backyard family BBQs. She has taken up baking and tennis.
The Eilers family. [image description: a family consisting of a mother, father (holding a small dog), twin boys, and a young girl pose in front of a set of large “happy birthday” signs posted in front of their home, a Spanish mission-style bungalow.
Myka has lived this life because of the ACA. She sees a team of doctors: cardiology, neurology, and orthopedics. She needs an MRI every six to nine months. I have seen the medical statements come through. I know how much each of the appointments or procedures costs. Before her first birthday, she had hit almost $500,000 in medical expenses. Not only does the ACA protect those with pre-existing conditions, but it prevents insurance companies from dropping coverage when you hit a lifetime cap. By the age of one, Myka was halfway to the former standard lifetime cap of a million dollars.
I’m grateful for the ACA. I worry everyday about what will happen to my family and my child should this law be ruled unconstitutional in the U.S. Supreme Court. I know what it has meant to us and how it has benefited our family.
Angela Eilers lives in Yorba Linda, California, with her family. She is a member of Little Lobbyists. This blog was adapted from testimony Angela provided on the ACA to the California State Senate Health Committee on October 21, 2020.