Imagine for just one minute this scenario: A super-power sending its soldiers off to defend itself with 18th century muskets against a very well armed foe. Would we be so ignorant as to think that these soldiers would stand a chance? Of course not. It would be nothing short of a complete slaughter. So, why are we arming children fighting cancer with weapons that are in some cases forty to fifty years old? Then, five, ten or even twenty years down the road, when the “survivors” end up with long-term health issues, or worse yet, die or contract secondary malignancies, why have we labeled these kids as cured in the first place.
Last month, I wrote about the overall message regarding our success rates against childhood cancer. The mainstream thought process is that there is an eighty (80%) percent cure rate for childhood cancer with current conventional therapies. Recently, I had the opportunity to address this point at the Childhood Cancer Caucus meeting on Capitol Hill in Washington, DC on September 19, 2013. My point to the members of congress and the other people gathered in the audience was that this message was significantly hurting our cause. Another childhood cancer advocate immediately followed-up on my point and addressed the very issue of what exactly being “cured” means and how misleading this concept remains. She shared her daughter’s tale of survival from childhood leukemia. Some twenty years later, her daughter is left with major life-long health issues that have impaired many of her daily functions including sight and hearing. The very treatments that “cured” her daughter have left her significantly impaired for the remainder of her life. Is this the “cure” we are talking about? More importantly, is this the type of cure we are accepting?
The simple fact is that the children treated today are being sent into battle with outdated drugs, leaving them impaired with life-long health issues and the real chance of secondary malignancies and death. Statistically speaking, thirty-four percent of children who are “cured” will die within thirty years; twenty percent of these kids will die within the first 5 years after being labeled “cured.” Twenty-five percent of these kids will survive thirty years but suffer mild to severe chronic health conditions. Nineteen percent of kids will suffer severe and life-threatening health conditions as a result of treatment. Finally, twenty-two percent of kids that are “cured” will live without any significant health impact. Do these numbers excite anyone? They certainly do not thrill me. This discussion does not even touch upon types of childhood cancer such as DIPG, an inoperable brain tumor, which has no available treatment. I should know, I watched as DIPG took my four-year-old daughter Alexis.
What is behind these grim numbers? Underlying these statistics are the barbaric and caustic treatments that we utilize in the name of curing kids with cancer. Of course, the same commentary regarding many of these types of treatments can be made about current therapeutic regimens for the adult population; however, one difference exists in my opinion. Children are not simply small adults. Drug development for childhood cancer lags behind in more than a significant manner. In many instances, it is almost completely non-existent. There has not been a single new pediatric cancer drug approved in the United States in well over twenty years. New drug development specifically for children with cancer has simply not been a priority on the federal level. Despite the lack of transferability in many instances, there are generally no current mechanisms to ensure that drugs being developed for the adult population are even tested in pre-clinical settings on childhood cancer cell lines. It is a complete failure of our approach that we force children to fight cancer in this fashion. Despite the efforts of so many amazingly dedicated pediatric cancer researchers and advocates, the current process of drug development in the United States is all but ensuring the continued use of decades old treatments that leave these children scarred and impaired for life.
There is some hope that this equation may change a little south of the Canadian border. With the passage of the Creating Hope Act, a piece of legislation that incentivizes drug manufactures by providing vouchers for expedited review of another drug once they place into development a drug for a pediatric rare disease, there is market incentive to help children with cancer. This market driven shift will take some time to bring new compounds to market. And thus, in the interim, creating awareness of the plight of children with cancer is the best mechanism to overcome the incorrect assumption that we are winning the proverbial war against childhood cancer.
Before my daughter Alexis was diagnosed with an inoperable brain tumor in April 2008, I was under the impression that children diagnosed with cancer lost their hair, were treated by St. Judes in Memphis, and were cured living long happy lives. This belief was the one sold by the masses and even some who operate within the childhood cancer space. It was the happy story of childhood cancer and the amazing medical and research community. I found out the hard way through watching my daughter pass away that this simply is a fiction. It is a story wrapped up with a nice bow, sold to the masses to entice donations for the feel-good side of childhood cancer. It belies the reality of so many parents who have watched as their child is lowered into the ground, or parents who live with the life-long issues caused by antiquated treatments and outdated adult drugs. As a society, we would not accept arming our soldiers with 18th century weapons; why then do we accept arming children with cancer with similarly outdated weapons? It is frankly unacceptable.
 http://api.ning.com/files/xHeFYx14hBRmCcfoQJcV1fN9qXcAgtc4-G0weL7uFkWZHZa9ZPQ22mDgaQ5NxxTHvMTgPhJabKnypi3cSGHb4ropwlHGUfR8/Presentation1.png From People Against Childhood Cancer’s website.
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 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.