As I stood alongside members of Congress, economic experts, and faith leaders, it was a mom and her nine-year-old daughter in matching t-shirts who stole the show and our hearts. We were gathered to launch “Nuns on the Bus.” Our sixth tour across America where my Catholic sisters and I talk to Americans about their concerns, and then take their stories to Capitol Hill.
Angela Eilers had been a stay-at-home mother of three, raising her twin 11-year-old boys and daugher, Myka, age 9. But life can change in a heartbeat. And on this day as we launched our bus, it was one single heart that was front and center. Myka’s heart to be exact.
Myka had her first heart surgery just under four months old. Angela says it was the scariest day of her life. And a two-week stay in the cardiothoracic intensive care unit didn’t come cheap, but the family had insurance through her husband’s job, and as Angela reflects back, “Frankly, I didn’t even know there were such a thing as ‘pre-existing conditions.’”
Rather than paraphrase, let me share with you the story Angela told the crowd at our bus launch, in her own words:
“I always had opinions of pretty much all the most important issues our country faced. However, I didn’t become an activist until November 10, 2016 — two days after the election I knew would impact my family in a very serious way. You see, my daughter Myka was born with a congenital heart defect. She spent nearly three weeks in the NICU after her birth. We were thrown into a new world of pediatric cardiologists, echocardiograms, and EKGs.
“I didn’t realize that before Barack Obama, with the help of Nancy Pelosi, signed into law the Affordable Care Act, individuals could be kicked off their plans because of an illness, disease, or injury even if they were three months old. Myka underwent her second open heart surgery at 11 months old. Again, we had great insurance which covered every penny of that $250,000 bill.
“When Myka was about two years old, my husband was laid off from his job. With it, our health insurance went, too. This created the perfect opportunity for my husband to open his own business. He would only be able to do so because we knew we could purchase our own health care without being denied coverage for Myka. His business took off, and he employs several people in Orange County, California.
“One of the often forgotten protections under the ACA, was the elimination of lifetime caps. To date, Myka’s cardio issues have generated $500,000 in healthcare costs. She would be halfway to her lifetime cap without the ACA. She hit that amount before she turned one.
“I knew, as they promised, that the first thing the GOP controlled House and Senate would come for was the ACA. That directly impacted my child, her health, and well-being. They were coming for her health care for which we received no subsidies.
“After the election of 2016, I began calling my Congressman every single day. I sent letters. I emailed him. I did everything I could to get him to hear my voice, see Myka’s face, hear her story. Surely, if he saw how adorable she was he’d come to realize he needed to stand up to his party and vote in the best interests of his district. After all, she was just a child. She did nothing wrong. She deserved better.
“All of this fell on deaf ears. I sat at my kitchen table watching the House vote to repeal the ACA. My Congressman voted yes without so much as a town hall or acknowledgment of those who were begging him to vote no. I sobbed.
“And then I became determined to help the candidate who would run to unseat Representative Ed Royce.”
Myka and her family are exactly why my Catholic Sisters and I are riding a bus across our nation. We are holding 54 events in 21 states in 27 days leading up to midterms. But on this trip, rather than head to Washington, our destination is Mar-a-Lago. We are making sure that we will be seen. That Myka will be seen.
“Protecting preexisting conditions is just a talking point UNLESS that candidate actually supports legislation to do just that,” Angela told us. “Who we vote for matters. If they aren’t listening to your voice, how can they represent you? Who we vote for matters. The GOP has already told us who they are. They are looking to repeal protections for people like my child. Those medically fragile individuals who need their elected officials to be THEIR voice, to care about THEIR well-being and to do what’s right for people. Not insurance companies.”
Angela’s activism is a very personal call-to-action for us all: “The past two years, I’ve learned a lot about what using your voice can do. Share your stories, hold your elected officials accountable, and most importantly VOTE for kids like mine all over this country who need people like you to stand up for them. I’d like to introduce you to the bravest girl I’ve ever known.”
As I watched Angela and Myka in their matching t-shirts that say “Little Lobbyists” — an advocacy organization begun in 2017 by parents of children with complex medical needs and disabilities — I couldn’t help but feel a mixture of hope and fear. These families became political activists in response to the health and financial threats created by policies and legislation under the current Congress and administration. I wish I could tell you that Myka’s story is unique. But this is my sixth bus tour across our nation. I have heard thousands of stories. It is always painful and poignant. These stories must be retold to voters and leaders. Because who we vote for matters.