05/14/2012 09:20 am ET Updated Jul 14, 2012

When the Reasons Are Unreasonable: The Childhood Cancer Drug Shortage

Some of you may recall when earlier this year a story hit the news about a nationwide shortage of the lifesaving childhood cancer drug, methotrexate. The drug is crucial for children fighting leukemia, and hospitals came dangerously close to running out of it. This caused outrage not only in the childhood cancer community, but across the country and questions began to arise such as: if we know that a drug can save a child's life, why would it ever be unavailable? Recently, a news story documented the fact that dozens of children's cancer drugs are running out for reasons that include manufacturing problems and reduced production due to lower profits with generic drugs. I don't know about you, but these reasons seem pretty unreasonable to me!

It's safe to say that for the over 200,000 children worldwide who face cancer every year, their life lessons come sooner than many of us can imagine. Children with cancer may face a diagnosis before they learn to walk or even utter their first word. How can I speak of these things with such clarity? Because my daughter Alexandra "Alex" Scott (1996-2004) was a childhood cancer fighter. Instead of celebrating her first birthday surrounded by friends and family, and of course cake, Alex was in the operating room surrounded by doctors, having a tumor removed from her spine. Alex battled a cancer called neuroblastoma, a cancer for which a cure has been elusive. Luckily, if the word 'luck' can even be associated with kids battling cancer, those who face acute lymphoblastic leukemia (ALL), the most common type of cancer in children, experience a cure rate of nearly 90 percent. Not surprisingly, this cure rate is associated with the drug methotrexate. Similar to Alex's neuroblastoma, many childhood cancer cures and the treatments that will lead to cures remain evasive to this day. Doctors across the United States are working to uncover these cures through new research and clinical trials; so when we have drugs like methotrexate and the dozen or so others that have been developed for childhood cancers that are proven to work, how is it possible that they would be unavailable to save lives?

The lives of children battling cancer are hard enough as they fight for their very existence, what happens now when the drugs they need to survive are not available? Not having these needed medications is simply unacceptable. If a drug like methotrexate had been available to help cure Alex's neuroblastoma, you better believe I would have been outraged when it was unavailable for her due to an avoidable shortage. I am equally outraged for the parents who are needlessly experiencing the uncertainty for their children's once bright prognosis, and for those who will face it in the future should the threat of a drug shortage become a reality.

Whether the shortage is caused by politics, manufacturing deficiencies or something else altogether, the simple fact is that children's lives are at stake. At Alex's Lemonade Stand Foundation, the nonprofit which resulted from our daughter's own efforts to help find cures for all kids with cancer, we come into contact with many families in desperate situations. We do all that we can for them, not only through the funding of research to discover cures, but also by connecting them with resources for help. When we receive calls from families who cannot get the drug their child so desperately needs to save their life, what will we tell them?

With this nationwide shortage in life-saving cancer drugs for children, we should be relieved to hear that there are bills in the congress, like The Preserving Access to Life-Saving Medications Act, which would require drug companies to notify the FDA if a shortage is coming. The even better news is that Republicans, Democrats and the president support the bills. So why then has this legislation, which I should add was introduced over a year ago, not been passed?

Simply put, this shortage of lifesaving cancer drugs, and the politics that surround them, has to stop.