The Politics of Surviving Childhood Cancer

September is Childhood Cancer Awareness month, and awesomely, my Facebook news feed has been flooded with pictures, videos, and status updates reminding the world that, yes, children can and do get cancer. I fear that many Americans think that the only children who actually get cancer are the sweet and oddly prophetic bald kids in movies and television shows who exist solely to prompt a healthy character to re-evaluate his or her life priorities. No, childhood cancer is definitely real, and it’s often a much more trying experience than pop culture lets on.

In fact, the cancer itself is typically only one part of the struggle for a family struggling with childhood cancer. In addition to a child being forced to consume poison in hopes of survival, there are the mounting bills, the building tension between parents, the social isolation of a sick child, and the unavoidable neglect of the siblings. You see, the cancer and chemotherapy are not removed from our day-to-day lives; rather, they are planted directly in the middle of the complex web of survival any family tries to weave.

Specifically, with the election around the corner, I can’t help but acknowledge the influence politics has on the experience of childhood cancer. What often goes ignored is how the experience of a family dealing with cancer is shaped by the government policies surrounding health care. So today, I am going to break down three ways that childhood cancer is political, in hopes that you are inspired to advocate for families with childhood cancer on a legislative level.

1. Accessible Health Care 

It’s a no brainer that cancer treatment is expensive, but opponents to health care reform often argue that no child would ever be turned away because of lack of funds. However, while it may be true that many foundations and organizations exist to help families without insurance navigate the exorbitant costs of health care, the cancer treatment is only part of the story.

What folks may not realize is that a cancer diagnosis often occurs because the parents took their child to the doctor for a seemingly benign issue. My brother was diagnosed with leukemia after he had been taken to the doctor because of a stubborn flu.  Other children or young adults are diagnosed when their parents take them into the doctor’s office because of a pesky cold, achy legs, or a sore back. And just like “adult cancer,” early diagnosis can make a world of difference for the prognosis of a child cancer patient. Therefore, parents need to be able to take their children to the doctor for regular check-ups or for that flu that just won’t go away without worrying about the cost of that visit.

2. Discrimination in Health Care

Look, I understand that people from both sides of the spectrum dislike the Affordable Care Act. I realize that the individual mandate is controversial to liberals who see it as just feeding more money to the insurance companies and to the conservatives who think that any mandate is an impediment on their freedom. Still, everyone seems to agree on one thing: discrimination based on pre-existing conditions sucks. What happens after a child has survived cancer? Even when that child grows up, she is still a cancer survivor in the eyes of the insurance companies. And cancer survivors have health care needs well past remission; they have to deal with way more check-ups than the average person, and they often have to cope with long-lasting side effects from the chemo, radiation, and/or surgery. So no matter what happens to the ACA in the future, we need to ensure that discrimination based pre-existing conditions stays far far away from the grubby hands of the insurance companies.

3. Paid Family Leave

When a child is sick in the hospital, who stays with him? His parents. Unfortunately, this level of parental devotion is often implicitly discouraged by the workplace. The Family Medical Leave Act is a start, but a truly pathetic one; it provides up to twelve work weeks of unpaid leave for eligible employees.  Let’s break this down.

First: twelve work weeks. Over the course of a year, my brother was in the hospital for way more than twelve work weeks during his treatment. Twelve work weeks is simply not enough for families in similar situations.

Second: unpaid leave. Families with childhood cancer still have to pay the rent or mortgage, utilities, student loans, credit card bills, car insurance, gas bills, and more. Those things don’t stop as soon as a child is diagnosed with cancer. What are parents to do when they have to choose between preventing eviction or being at the hospital when their child is undergoing surgery? It’s an impossible decision to make, on both a practical and emotional level, yet parents who work have to make this decision all the time.

Third: eligible employees. In order to benefit from the FMLA, a parent has to either work for a government agency or a larger business. In addition, that parent has to have worked there for over twelve months. So, if Dad was just hired at a new job one month before Daughter was diagnosed with cancer? No guaranteed job protection for him. If Mom is an adjunct instructor at a university that pays for her son’s health insurance? This is a true story, and yes, Mom has to continue to teach everyday despite her son’s health because adjuncts have no job security to begin with and he is on her health insurance.

Maybe you think paid family leave is just too good to be true. Well, the majority of industrialized countries would beg to disagree.

Really, these three issues are just scratching the surface. I could go on and on about how defunding special education is hurting childhood cancer survivors who return to school with special needs because of their treatment, but I’ll leave that for another day. The reality is that childhood cancer is about more than just bald heads with radiant smiles—although that is definitely a part of it. The political world impacts a family’s ability to focus on physical and emotional healing, as well as the joy of being a family, and the more we are aware of how laws and policies shape the lives of families with childhood cancer, the more we can advocate for the health and well-being of all children.

The Politics of Surviving Childhood Cancer

4 thoughts on “The Politics of Surviving Childhood Cancer

  1. christina burnie says:

    I loved reading this and while talking about politics, you did a great job of not bashing one side or the other. Thanks for sharing 🙂

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