Author: Jonathan E. Agin, JD – Max Cure Foundation Executive Director
In a recent article written by Mathew Zachary entitled The End of Pediatric Cancer Research as We Know It, published on December 2, 2015, the argument is posed that as a society we overplay the death toll from childhood cancer in the United States and are not focusing on the bigger picture at this point: survivorship issues. Mr. Zachary, a young adult survivor of brain cancer, was diagnosed at age 21, and not in the pediatric age range of 0-19 years. He is the founder of Stupid Cancer.
Mr. Zachary “comes out of the gates” by suggesting that the amount of media attention, commercials, personal funding requests by families, marketing campaigns and hashtags would lead Americans at large to believe that millions of children a year die from cancer in this country. Mr. Zachary continues in the first several paragraphs by discussing the number of cases of pediatric cancer; the amount of money designated through the National Cancer Institute (NCI) to pediatric cancer specific research, and comes to the conclusion that we as advocates are discussing the problem incorrectly. Why? Because, first he believes his simple statistical analysis comparing the number of diagnoses versus the overall percentage of the NCI budget demonstrates that proportionately childhood cancer receives more than enough. In addition, Mr. Zachary points out that childhood cancer as a whole has the highest average five-year survival rate and survival improvements in all of oncology. Accordingly, he believes instead of all of the attention paid to the negative side of the childhood cancer equation, we should be trumpeting these statistics.
It is estimated that 15,800 children (ages birth to 19) each year in this country are diagnosed with cancer. There are 16 major types of pediatric cancer, with more than 100 subtypes, each requiring a different treatment protocol. Currently, it is estimated that the overall 5-year survival rate is 83% (“5 year survivors”), with 18% of those that survive that initial 5-year period expected to die within 25 years of being labeled a survivor. The 5-year survivors have an 8 times greater mortality rate than those children that did not have cancer.
Overall, I strongly disagree with the main premise of Mr. Zachary’s piece. I agree with him that there is a positive story to be told about childhood cancer treatments in the United States. In fact, it is the childhood cancer research pioneered by Sidney Farber in the 1940’s that created the foundation for so many treatment protocols for oncology in general as well as the ideology behind treating many forms of cancer. Mr. Zachary does a significant disservice to the childhood cancer community by failing to mention that many forms of childhood cancer have had little to no increase in overall survivability since their classification. Thus, his piece, and his premise, fails altogether to take into account many of the reasons why it is beyond premature to believe that now is the time to shift the overall focus.
Despite current successes there is a desperate need to continue advocacy for more research funding, greater drug development and availability, and legislative change to ensure all forms of childhood cancer are universally survivable. The fact that cancer continues to remain the number one cause of death in children due to disease in the United States is simply not a fact that can be glossed over or swept under the rug.
Unfortunately, I have known more children who have died of cancer than who have survived. This began with my friend Marc Joseph who died of a brain tumor when we were 13 years old. Cancer then hit home for me when my four-year-old daughter Alexis was diagnosed in April 2008 with DIPG, a deadly pediatric brain tumor, and ultimately died in January 2011. Just last week I delivered the eulogy of a 6-year-old girl who died of DIPG. Those diagnosed with DIPG are essentially terminal upon diagnosis. There has been no success in the treatment of DIPG since its overall classification as a specific type of brain tumor. Other forms of childhood cancer are not much better. In many forms of childhood cancer should the disease recur or metastasize, it is more often than not a death sentence. Treatment protocols, drug development and the availability of genetically targeted drugs currently only available in the adult population are all continuing issues that need to be addressed. Without the constant and fervent advocacy of parents, like myself, who have watched as their child took one last breath, it would be easy to believe that there is no need for investment in childhood cancer research if readers rely simply upon articles like Mr. Zachary’s.
Survivorship issues are certainly becoming more significant as the population of childhood cancer survivors continues to grow. As the article notes, children labeled as survivors experience life-long acute health issues as a result of the very treatments that allow them to survive the initial diagnosis. These issues are slowly being addressed, but follow-up care for survivors years down the road, and the tracking of such care, are certainly lagging behind. The gap between the premise of the piece and the reality needed to achieve greater focus upon the issues I raise lies with a continued need for advocacy efforts designed at creating better treatments, drug development, and drug availability for all forms of childhood cancer. As even Mr. Zachary observes, just labeling a child as cured fails to tell the entire story. A cure comes, as is noted, “at what cost?”
To ultimately tackle the issue that the piece addresses, we must continue to raise our voices and seek greater investment and collaborative efforts for treatment protocols with less overall toxicity and specific efficacy for many of the forms of the childhood cancer that continue to have dismal “cure” rates. Consequently, seeking to shift a significant percentage of the private research investment to survivorship issues presupposes we are in the final miles of this ultra-marathon, when in fact the state of childhood cancer research and treatment overall is closer to the starting line than the finish line.
I personally agree with the underlying focus of the piece; the limited focus on survivorship issues must change. Kicking these children off the boat after they are deemed “cured” does a complete disservice to this increasing population. Continuing to run with my ultra-marathon analogy, these kids are just beginning their race when they are labeled cured. We cannot end the focus upon research into less toxic yet more effective treatments across the spectrum of childhood cancers until we actually have these at our discretion. Perhaps we should create better metrics for research funding to ensure that there is a greater translation from lab to clinic.
Ultimately, I cannot agree that we have or should have reached the “End of Pediatric Cancer Research as We Know It.” Until children labeled as “cured” or “survivors” do not experience long-term acute side effects from the drugs utilized in treatment in the first place, we cannot declare an end to childhood cancer research as we know it. Until the many forms of childhood cancer with no increase in survivorship rates, or that are terminal upon diagnosis or recurrence are universally survivable, we are not even close to an end of pediatric cancer research as anyone knows it. I have significant respect for Mr. Zachary, and frankly, I think we could have a great conversation regarding this topic. I also know first hand through my daughter and my work that we are not even close to declaring, “mission accomplished” or changing the overall focus of our advocacy efforts and messaging. I have watched far too many children be buried to agree that our advocacy and funding efforts need to shift in any substantial manner.
No, we are not losing millions of children a year to childhood cancer. That is a true statement. I also do not believe that our community is trying to create or perpetuate this image, contrary to the opening statements in Mr. Zachary’s piece. Simply, we are parents and caregivers who have watched as our child or other children have suffered. We watched as they took their last breath and watched as they were lowered into the ground. These parents have pleaded with countless treating physicians to save their child. On many occasions, including in my own daughter’s fight, the answer has unfortunately been very simple; we do not have the drugs and treatments necessary to cure these children. No Mr. Zachary, I for one am not ready to declare that we are at an end to pediatric cancer research, as we know it.
Author: Jonathan E. Agin, JD – Max Cure Foundation Executive Director
Follow him @jonathanagin