You all remember that little government shutdown a handful of weeks back don’t you? The emotional press conferences held by members of Congress on both sides of the aisle talking about how children with cancer would not receive treatments at NIH, and new trials would be shelved. The votes to piecemeal fund clinical trials at NIH. Doctors in lab coats stood behind members of Congress as we all worried about children currently battling cancer and those newly diagnosed. One member of Congress, in a now regrettable moment, made a declaration about helping out just one kid with cancer versus other groups impacted by the shutdown. And then, it went away and kids with cancer were no longer front and center or a national priority. Children with cancer in this country were shelved for the next time they are politically necessary. There was no further need to do any type of news coverage either. And that is the problem. The message that we receive is that kids with cancer are only really important when they have a larger impact or play a valuable role to those using them for gain. When they are politically beneficial or useful for raising money through a Relay for Life advertisement or large endowment, then you see childhood cancer.

If you watched the press conferences on the Hill, you got the sense that many members of Congress believed that childhood cancer research and access to clinical trials was in fact a significant priority. You were left with the belief that members of Congress on both sides of the aisle wanted to ensure better treatment of children with cancer. But now that it is all over, it is quite easy to pull the curtains back on Oz and see the real truth. The same members of Congress who were so quick to use children with cancer as tools are more than accepting of Harold Varmus, M.D.’s four percent allocation of the National Cancer Institute budget for research of all forms of childhood cancer combined. Pull the curtains back a little more and learn that the FDA has approved only one new drug specifically for childhood cancer in the past 20 years.

Once the crisis was over, for the time being at least, and it was safe to put children with cancer out of sight again, it was business as usual. The days moved on, the White House turned pink for breast cancer awareness month, despite the childhood cancer communities’ request that it be lit gold for September and Childhood Cancer Awareness Month, and yet again there was nothing to be gained from kids with cancer. So really, what message does this send to the childhood cancer community? In essence, we sit stranded on a desert island waiting for rescue. We may as well be waiting at the top of Everest for a rescue party. Unfortunately, it simply is not coming anytime soon at this pace. You see, childhood cancer is simply not a convenient priority for those who control the budgets, the appropriations or the development of new pediatric specific drugs. This despite the fact that it remains the number one disease killer of kids in this country. It sits in the corner, the red-headed stepchild to its more famous adult brethren. Rather then having its own place on stage, it plays a role as a background dancer as the world focuses on other forms of adult cancers with the hopes that treatments trickle down to the smallest warriors. This is simply not acceptable.

When my daughter Alexis was first diagnosed in April 2008 with an inoperable brain tumor, it scared the living hell out of me. Those words, “your child has cancer,” simply will never leave my collective consciousness. But then I took a step back and thought about all the amazing advancements of medical science in this country. Naïve, uneducated and simply dazed and confused, the voice inside my head thought, “they will be able to remove the tumor, and she will be O.K., just like all the other kids you see in the St. Jude commercials.” But the reality did not match this dream scenario, and in fact, there was no surgery available, no proven treatments and Alexis was marked for death with a sentence of six to nine months, maybe a year, with standard radiation therapy. Imagine that reality. It stunned me more than anything else. Here we are, a country that sent a man to the moon over 40 years ago, a country that can spend billions of dollars moving a remote controlled vehicle on Mars, and we cannot eradicate a tumor from my daughter’s head that rested comfortably no more than three to four inches inside her skull? Alexis battled for a long 33 months and was considered a long-term survivor of DIPG. In that time, I began to pull the curtains back on the great and powerful Oz, and I found that childhood cancer is simply not a priority for this country on a federal level. There are so many talented and amazing doctors and researchers who have dedicated their lives to finding real and lasting cures who struggle on a yearly basis to find funding. It is truly maddening.

And that brings me back to the shutdown again. What happened to the sense of urgency for children with cancer in this country after those press conferences? It was gone. In an instant, children with cancer did not represent an opportunity for publicity anymore. Children with cancer were no longer politically sexy. And thus, the community took two steps forward, and five back again. I suppose it is up to those of us in the advocacy world to once again press the issue and demand better for our kids. Ultimately, this is not just an issue of children with cancer. This could be any other disease population. It could happen to you and your family. It is imperative that we send the message loud and clear that children with cancer are not pawns to be used for political gain. That simply is wholly unacceptable.

Author: Jonathan Agin