On the South side of the border, here in the states, we struggle with raising awareness, not to mention increased federal funding, for childhood cancer and research in general. There are a number of reasons why childhood cancer fails to rise to the level of other more “popular” segments of the adult cancer population such as breast cancer. Unfortunately, I learned this the hard way following the diagnosis of my two year old daughter Alexis with an inoperable and terminal brain tumor back in April 2008. As an American, you are taught to believe that your country can do anything and our possibilities are limitless. After all, we put a man on the moon over forty years ago. Why then was it impossible to cure my two year old daughter? The tumor that took her life was a lot closer than two hundred thirty eight thousand miles away; rather, it was only several inches insider her beautiful head. And thus, as we grew more intimately familiar with the world of childhood cancer, and ultimately I stepped into the role of a childhood cancer advocate and lobbyist, I learned just how amazingly lacking the awareness is for the cause. And this may ultimately be the true tragedy for our kids battling cancer.
Childhood cancer in the United States is unfortunately considered rare. Despite the fact that it holds the distinction as the number one disease killer of children in the states, those in control of the federal research budget and our members of congress continue to devote only four percent (4%) of the overall federal cancer research allocation to the over forty different classifications of childhood cancer. And thus, for those of us who have not only witnessed our child’s last breath, but also tried to change the landscape and raise awareness for, and additional funding, the challenges are quite overwhelming and vexing.
With this background in mind, I believe it is extremely important not to think about childhood cancer awareness in a vacuum based solely upon your locality. Rather, there is great power and action in joining forces with advocates from all over the world to highlight the need for accelerated approaches to curing our children. Take for example the specific tumor type that my daughter Alexis had. In the United States, the estimate is that approximately 200-300 children a year are diagnosed with diffuse intrinsic pontine glioma or DIPG. This is obviously a very small segment of the disease population. Since my unfortunate entrée into the world of childhood cancer, several international symposiums and collaborative efforts have been created in order to draw the best researchers in the world into one room to discuss moving the ball forward on this tumor that is an almost certain death sentence. This is obviously a very positive effort at trying to utilize the resources available in different countries. Unfortunately, in certain areas of the world, cancer, and more importantly for purposes of this piece, childhood cancer, remains completely off the radar screen for both cultural and economic reasons. Thus, consensus approval from all corners of the globe is nearly impossible to achieve.
Childhood cancer is not simply a country-specific disease with nationalistic implications. Rather, it is a global disease where the best advancements can be made by viewing the necessity for awareness in this context. Impediments that currently exist to drug development and participation in clinical trials could be wholly eliminated by creating international collaborative efforts that utilize the best elements of each country’s scientific and regulatory communities. This open market concept could not only benefit researchers, but it would also hopefully allow for faster drug development, faster drug delivery, and, for the pharmaceutical industry, more avenues for profit streams. Ultimately, it is profits that drive the advancement of drug development. We must research and execute methods of creating greater partnerships across borders and cultures in an effort bring true cures to more segments of the childhood cancer population.
In the end, those of us in the childhood cancer community need to find common ground to organize and unite much better than we have been doing. This may be difficult to conceptualize with respect to an international sense of collaboration given the state of disunity in the community in the United States. I believe there is common ground though, and more importantly, I am convinced that through international unity childhood cancer awareness grows exponentially with the outgrowth of saving more children’s lives and advancing new treatments. It all seems quite easy, and whereas this thought process may be quite simplistic in nature, I am aware that in terms of putting this into practice, there are significant obstacles. The first step needs to be an international call to action followed by the creation of a realistic agenda. As the famous saying goes, “[t]he journey of a thousand miles begins with a single step.”
The struggles we in the United States face to ultimately raise awareness, and more importantly, research funding for childhood cancer, could be greatly reduced with increased international collaboration and pairing of researchers. It is important not to view this effort in a vacuum, but rather to engage on a broader level. There will always be finite limits that a country and government set for a specific disease population. Combined though, when we break down these barriers, we can increase overall focus, both on a simple awareness level and more importantly, on a monetary level.
I greatly admire children diagnosed with cancer. They are the true embodiment of what a hero is and should be. They do not choose this role, nobody ever would. But they inspire me. My daughter Alexis inspires me. She drives me and I continue her fight. Childhood cancer took her from me in the physical sense. This is her fight. It is the fight for every child who has come before, every child currently fighting, and every child who is “chosen” to fight tomorrow. This fight is not divided by borders drawn on maps. Rather, it is a fight that touches the smallest members of our communities in every corner of the world. It is far time that we unite and engage the battle on that same level.
 Lao-Tzu (604 BC – 531 BC).
Jonathan Eric Agin is a childhood cancer advocate, speaker and an attorney (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel Agin and Trevor Agin. Alexis was diagnosed in April 2008 with a tumor in her brainstem and battled for 33 months before passing away on January 14, 2011. Mr. Agin, along with his wife, run a Washington, DC chapter of a pediatric brain cancer foundation.
In his spare time, Jonathan participates in endurance events, such as triathlons and running races to raise increased awareness for childhood cancer.