For quite a few years, I worked in an organization that advocated on behalf of people with cancer. Most of our power as a lobbying force came from the legions of committed volunteers who would tell their stories to people in places of power. They advocated not for themselves, but for the next person to hear the words “You have cancer.” Their own stories were written. They wanted to change the outcomes for stories yet to start.
There was one family I met whose story haunts me. A child got cancer. Just one of those horrible twists of fate. Her parents had the resources to get her the optimal course of treatment and she survived. But in surviving, she used up her lifetime allotment of insurance coverage. The insurance policy that covered her family was now worthless for her and, because of her history with cancer, she was uninsurable as an individual due to restrictions insurance companies place on people with pre-existing conditions. And although this girl was finished with cancer treatment, she would still need treatment for the health problems that remained because of cancer.
This is what I was thinking about when I read the Presidential Proclamation declaring September as Pediatric Cancer Awareness Month: families facing not just a disease but a seismic change in their future. Cancer doesn’t leave the human body without a fight. Being “cured” doesn’t mean going back to the way you were before cancer. The damage the disease and its treatment do is noteworthy: organ damage, bone damage, infertility, cognitive dysfunction, disfigurement. The list goes on. Life after cancer can involve secondary health problems that will require lifelong care, care that might cost as much as cancer treatment.
For the first time, children with cancer are safe from being shut out of insurance coverage from their disease and follow-up care. While it might have been politically opportunistic of the White House to put this line in the proclamation, it doesn’t make it less true:
Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits.
For families coping with the reality of cancer and its aftermath, these two small changes out of so many in the so-called Obamacare law are the difference between getting all the treatment a child needs and being cut off before the work of caring for the child is done. Despite all the shouting about how imperfect Obamacare is, I have always been grateful that the architects of the law were astute enough to put in these protections that will help so many families of children with lifelong health issues, not just cancer. It’s a change whose time had come. Now families can spend their energy fighting the disease, not the insurance companies.
Photo credit: iStock
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