I held my mom’s hand tight as her doctor broke the news no one wants to hear: “It’s cancer. Acute Myeloid Leukemia.”
A tear fell down her cheek. “OK. Tell me how we fight it,” she said with a slight shake in her voice giving way to the fierce resolve I’d heard every day for 24 years.
The statistics and treatment recommendations washed over us. Sixteen percent chance of survival. No time to wait. Starting chemo tomorrow. Stem cell transplants. Blood donations. Insurance paperwork.
That last one was the last thing on my mind. I knew she had insurance. My parents owned their own small business, and I was well aware that it took some scrappiness and creativity to make ends meet, but things had always seemed to work out OK. Proud of their working class roots and the way they had each cobbled together college degrees working full-time through community college and state schools and built up a successful business together (my parents prized living simply), working hard, saving, giving their time generously, having just enough and appreciating it.
My mom, being the incredible woman she is, tried to normalize and downplay everything. We decorated her hospital room with inspirational quotes. Her hairdresser came into the hospital and cut off her long hair she’d been growing out to donate for the past year before the chemo would destroy it. She talked about how she’d always wondered what it would be like to be bald and minimized the heavy moments of signing DNRs and updating her will.
On Valentine’s Day, as the chemo dripped into my mom’s veins and she sucked on ice chips to relieve the painful sores in her mouth, I slipped down to the cafeteria and found my dad alone at a table with a blank stare on his face. Slowly, the details rolled out. Barely weeks into treatment, her insurance was already maxing out. Cashing out retirement accounts would only go so far. Their insurance just wasn’t enough, and having been fortunate enough to avoid any chronic health issues up until then, he’d had no idea.
I was scared but dismissive. “OK, this is why you always say we have to save, right?” I bumbled. “And have a good credit score. So if something like this happens, we’ll be OK.”
He stared back, his eyes empty.
I knew so little at the time about how health care actually worked in this country. In this moment of crisis, I just hoped and prayed everything would work out. As we sat in silence, all I could think about was the rusty brown Hyundai my dad drove when I was growing up. It had embarrassed me at the time, but when I grew old enough to realize that was one of the many trade-offs my parents made to afford my soccer club fees, ice skating lessons and class trips, I was overwhelmed with equal measures of guilt and gratitude.
“At best, my mom’s current insurance would have covered a few short rounds of chemotherapy. What she needed was an aggressive treatment plan, including months at Dana Farber and an experimental stem cell transplant to save her life.”
This wasn’t going to be as straightforward. You couldn’t fight a quick-moving, aggressive, deadly disease with careful budgeting. Cancer treatment is rarely something Americans can pay out of pocket for, with treatment costs often soaring into hundreds of thousands, even millions of dollars (see Newsweek’s Cancer edition).
At best, my mom’s current insurance would have covered a few short rounds of chemotherapy. What she needed was an aggressive treatment plan, including months at Dana Farber and an experimental stem cell transplant to save her life.
If the year had been 2008, my mom would have been locked into her current maxed-out insurance plan with no options. But the year was 2012, and the social work team at her hospital was as determined as we were to give her a chance to fight. The Affordable Care Act had been signed into law in 2010, and the rollout was underway. The health care exchange was just getting set up, and it took some navigating, but sure enough my mom was able to be released from her current policy and buy a hefty plan that would cover much of the aggressive treatment she needed. The medical bills still rolled in, but she had what she needed ― a chance to fight this disease with everything she had.
In the months to come, our community wrapped its arms around us ― from an amazing team of doctors and nurses to an anonymous stem cell donor who came forward with a life-saving donation to neighbors that showed up on my parents’ doorstep with casseroles. When my mom was transferred up to Dana Farber for treatment, I took the bus across town each evening to sit in her hospital room. We’d talk about the weather, our days, and I’d assure her that she wasn’t missing anything that exciting on the outside world and it would all be waiting for her when she was ready. On the last bus home every night I’d lean my head against the window and repeat the same thing over in my head: “It has to be OK. She has to be OK. She has to live.”
“Each time I hear pundits or legislators talk about repealing this law, I hear them say that Americans like my mom don’t deserve a chance to fight for their lives.”
My mom never saw an alternative. She was determined, and we were incredibly lucky. She fought this disease with grace, kindness and compassion. After countless rounds of chemo, a stem cell transplant and a period of quarantine to rebuild her fragile immune system, she was cautiously declared cancer-free in 2014. Towards the end of her course of treatment, she started to write thank you cards to everyone she could. To her doctors and nurses, to our friends and family, and even to the White House. She was profoundly grateful to be here and acutely aware that her story could have had a very different ending.
The life-saving impact of the Affordable Care Act is indisputable. Today, 16.4 million people who were previously uninsured are covered. More over, folks with pre-existing conditions like my mom (over 129 million Americans) can’t be denied insurance or subjected to lifetime coverage limits. I hope every day that her health care challenges are behind her, but she’s still closely monitored by a team of doctors, and it’s essential that whatever comes her way, she is covered.
As Congress comes back to work this week, I urge our legislators to spend time with constituents like my mom and deeply reflect on their oath to serve the American people. It’s not an overstatement to say that the actions they take in the months to come will decide whether or not our neighbors, brothers, sisters, wives, husbands and friends have the healthcare they need in moments of crisis. Each time I hear pundits or legislators talk about repealing this law, I hear them say that Americans like my mom don’t deserve a chance to fight for their lives. That’s just unacceptable. From coal workers in Kentucky to children in Utah, this law is working for our fellow Americans.
The America I know and love is a kind nation. Characterized by my mom’s open arms and warm resolve, my dad’s scrappiness, and the generosity of our neighbors who showed up on our doorstep with casseroles in hand. There is so much work to do in our communities to strengthen pathways to opportunity and mobility for folks. Instead of tearing apart an effective law that is saving lives, our representatives in Congress should fight to protect it. In the days and weeks ahead, let’s work together to ensure that in this resilient nation of ours no one goes broke because they get sick or loses a chance to fight for their life. Together we need to stand strong in our commitment to health care as a basic human right that keeps our loved ones here and healthy.