As we approach the fall, and we look back at our recent activities, including our children’s first day of school, it is hard not to think about how very different the lives of children with cancer and their families are. Whether it is nursery school, kindergarten or even senior year of high school, we send our children off to prepare for the future dreams that await them every September. But what if they didn’t have the chance to partake in such a normal activity? For over 12,000 families whose children are diagnosed with cancer every year in this country, this isn’t merely a question - it is a harsh reality.
Why is this more relevant now than ever? Because this is such an important time in our country for families fighting childhood cancer, as well as all families who may someday face an illness they hadn’t anticipated. September was National Childhood Cancer Awareness Month, and it also represented an important time in the future health care of the country. President Obama had originally set a September deadline for producing a bill on health care reform, which when it comes to fruition, will surely affect the way we fight childhood cancer.
If you have watched the news lately, you know that President Obama is busy spending his days talking about the future health care of the United States. As he makes speeches at different venues in different cities around the US, he often pulls at the heart strings of his audience by using examples of families whose children have been affected by an illness. These stories often end in the family facing bankruptcy, or battling with their insurance companies for the medicines and treatments that their children need. These are in his own words, “the voices of the millions upon millions of Americans who quietly struggle every day with a system that often works better for the health-insurance companies than it does for them.”
We could easily be one of these voices – our late daughter, Alexandra “Alex” Scott (1996-2004), founder of Alex’s Lemonade Stand Foundation for Childhood Cancer, was diagnosed with a form of childhood cancer before her first birthday. As young parents, we would quickly begin to collect credit card debt, opting to provide our daughter with the medications and treatments that might save her life, whether the insurance company was willing to pay for them or not. We saw first hand the challenges of our health care system, but we also saw how when done right, hospitals, doctors, and insurance companies can work together to improve lives. We saw doctors provide the best quality of care for children without regard to cost; we received a personal phone call from a case manager at our insurance company to inform of us that they would in fact pay a large claim; even the pharmacist at the hospital worked with the insurance company to make sure we could obtain a new drug for Alex that was not covered under our plan.
Through our daughter’s seven year battle with cancer, we witnessed families struggling with high out of pocket costs, low wages and being denied potentially life saving treatments due to lack of insurance. We also saw the polar opposite when insurance companies or state-funded programs paid for life saving treatments for children without hesitation. The bottom line was and still remains, that while we might not have all the answers, the United States has all the components to improve upon an already outstanding health care system. No one should be denied health care because of their inability to pay for it, but fixing this problem requires all parties to come together – including doctors, health care professionals, hospitals, insurance companies, and most importantly, the people that the health care system is supposed to serve.
Thankfully, childhood cancer is becoming a survivable disease, though there is still so much work to be done to find better treatments and cures. Nearly 80% of children diagnosed with cancer will survive, but the medical costs that families endure throughout their battle and follow-up will continue to linger. Additionally, children often face lifelong complications and the development of chronic health problems due to their disease and subsequent treatment. The best quality of health care is imperative to children fighting this disease, and to all other children and families who face long term illnesses. It is time for this country to come to an agreement to protect ourselves and especially our children from suffering the long term financial effects of a serious illness.
As we move out of September, with the battle against childhood cancer fresh in our minds, let’s also recognize how important health care reform is. If we could stop the partisanship and finger pointing that only emphasizes our differences, and serves only to divide us, we would get to the core of this issue - that everyone deserves to have access to good medical care. The process will no doubt be a learning process, but one that is imperative to start now.
Liz and Jay Scott,
parents of Alex’s Lemonade Stand Foundation for Childhood Cancer founder Alexandra “Alex” Scott.