I was never very good at math. Point of truth, as I was preparing to walk down the aisle right before high school graduation in 1989, my then math teacher and vice principal, put his rather frightening hand on my shoulder and told me he had some advice. With all the conviction of someone who thought he was doing me a favor, he told me that I should never again take another math class. Somehow, I got through undergrad and then law school while heeding that gentle recommendation. Fast forward to 2008 and my then twenty-seven (27) month old daughter Alexis is tragically diagnosed with DIPG, a rare brain tumor that is almost universally fatal in ninety-nine percent of the children who are diagnosed with the disease. We were not so fortunate as to have been given one of the “better” cancer diagnoses, if you can even meld those words into the same sentence. Alexis outlived the prognosis by about twenty-one months, battling with amazing grace and courage until she was just two weeks shy of her fifth birthday. On January 14, 2011, my daughter became one of the many children who do not fit within the often-overstated statistic of an eighty to eighty-five percent overall survival rate for childhood cancer.
It is a frequently quoted survival statistic that is utilized by many in the cancer world and beyond. We are told that eight out of ten children that are now diagnosed with cancer are “cured” or have an overall five (5) year survival rate. Accordingly, people outside of the childhood cancer community obtain the impression that great strides are being made in the overall battle against all forms of childhood cancer. Unfortunately, nothing could be further from the truth. The medical community has made amazing strides in treating children with various forms of leukemia. The current “cure” rate for ALL, or Acute Lymphoblastic Leukemia is often quoted as close to ninety percent. If you are pulled into a room and told your child has cancer, four of the most frightening words a parent can hear, you need to hope that this is the diagnosis. Of course, even children with ALL die each and every day, and more importantly, the long-term side effects from the caustic treatments often cause life-long health issues that cannot be effectively managed. (A topic to be dealt with in another piece). For those of you who know the horrors of DIPG, osteosarcoma, recurrent neuroblastoma, AT/RT, etc., etc., the often quoted numbers fail to provide any solace.
And that takes me squarely to my point: the statistics provided for the overall survival rate for children diagnosed with cancer in advanced countries such as Canada and the United States are completely misleading. More importantly, it is quite damaging from the standpoint of enacting childhood cancer specific legislation or gaining additional research funding on a federal level or even private level. Harold Varmus, M.D., head of the National Cancer Institute (NCI), the federal body in charge of apportioning money for cancer research on the national level, is one of the most recognizable individuals in the U.S. continually providing such misleading and damaging information. He is the individual who makes the decision as to how much of the federal research dollars are devoted to each specific type of cancer. Dr. Varmus has seen fit to devote approximately four (4%) percent of the U.S. federal cancer research budget for all types of childhood cancers. This amounts to approximately $200 million dollars out of an over five billion dollar budget. In 2011, when he appeared before the Senate HHS Appropriations Committee to discuss the overall budget for the National Institutes of Health, Dr. Varmus told the members of Congress present at that hearing that the vast majority of children diagnosed with cancer are cured in the United States. Accordingly, the overall apportionment of approximately four (4%) percent of the budget was more than appropriate. This single statement did more damage to the childhood cancer community on a federal level than anything else imaginable.
If I could have a polite conversation with Dr. Varmus, something I have been trying to do, I would discuss the need to change the overall message that is presented to the world about how successful we have been at treating and curing childhood cancer. The fact of the matter is, if you remove the cure rate for ALL from the overall statistics utilized for the successful treatment of childhood cancer, we may be left with a vastly different picture of the cure rate. You may find that what is left is an overall cure rate of approximately thirty (30) to thirty-five (35) percent of children diagnosed with cancer, other than ALL. What this insidious truth does is call into question the job performance of people such as Dr. Varmus and Francis Collins, M.D., the head of NIH. That does not bode well for job security, not to mention what scrutiny the truth may draw from members of Congress or the general public.
Therein lies the problem. On the one hand, it is great to be able to send out the message of success to demonstrate just how far medical science has ventured. Unfortunately, this positions those of us fighting to change the message and bring forth cures to all forms of childhood cancer squarely at odds with the individuals in charge of childhood cancer research policy on the federal level.
Unfortunately, I know more children who have passed away from childhood cancer than I do who have survived. This includes my daughter. Does this suggest that all of these children, literally hundreds, have been completely unlucky and diagnosed with the “wrong” form of cancer? Or, does this simply mean that the curtains are being drawn back on Oz and light is being shed upon the problem with the message that is being distributed to the general public? Either way, care needs to be taken with the words, images and numbers that are presented about just how successful we are in treating children with cancer. If the wrong message continues to be disseminated, the childhood cancer community will continue to struggle for the awareness and funding that is so desperately needed across the world.
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.