My name is Alycia Steinberg and my story started on a Friday afternoon in October, 2011 when I took my two-year-old Avey to her pediatrician’s office for what I thought was a minor kid illness. Monday morning, while Avey and I were shopping for “big girl” toothpaste, the pediatrician called with unexpected lab results—it looks like leukemia, go directly to the Hopkins ER.
In that instant our lives turned upside down.
Avey was an inpatient at Johns Hopkins for 24 days while she started intensive chemotherapy for leukemia, the most common childhood cancer.
We are lucky that Avey’s prognosis is excellent. But those first weeks were overwhelming. We had to learn a new language of leukemia and its treatment. We had to figure out how to explain this terrible world to our two-year-old. I watched my little girl lose her hair, I watched her lose her ability to walk.
And I worried about losing our health insurance. Avey’s hospital stay cost $100,000. She has two-and-a-half more years of chemotherapy ahead of her. Being uninsured is not an option for my family.
Our health benefits are provided by my employer. My husband is a small business owner. I was unsure of my ability to return to work. I thought I had some time to figure things out, between my vacation time plus Family Medical Leave. But, those two things can’t be added together. And my Family Medical Leave was pro-rated because I’m a part-time employee. I burned through Family Medical Leave before I even used all of my vacation time.
My husband’s small business has always offered health insurance to employees, so that is an option for us. And, thanks to the Affordable Care Act, Avey’s “pre-existing condition” is protected. But I worried about continuity of care for Avey, and about affordability, for us and for the company. Would a year of Avey’s claims make health insurance cost prohibitive in the future, jeopardizing coverage for my family as well as for my husband’s employees? Was COBRA a better option? What would happen when our COBRA ran out? It was an exercise in counting months and days to see how we could make it to January, 2014, when the Affordable Care Act is more fully implemented and we have more options for coverage.
I’ve worked in health policy for over a decade. I know that I need to pay attention to our health insurance. I know what questions to ask, and where to go for answers. And still I’ve spent countless hours trying to sort this out.
Avey is responding well to treatment, and for the time being I’ve been able to return to work and maintain our health benefits. But, as Avey enters more intensive chemotherapy cycles our delicate balance could crumble.
Childhood cancer is cruel. To have to worry about how your child will get treatment, and how you will maintain your family’s most basic financial security, is also cruel. The people in this country need and deserve a better system for ensuring access to health care. When discussing health reform, we often talk about our goal of protecting the most vulnerable among us. What we forget is that we are all vulnerable.