It is no secret that the rates of childhood cancer have been steadily increasing in the United States over the last 40 years. This has been seen in clinical literature and reported by various government health bodies since the early 2000s. The New York Health Department released their own statistics in 2018 and used one sentence that cut both ways to sum up their findings. “Rates of newly diagnosed cases of cancer in children are increasing slowly. Rates of children dying from cancer, however, have declined sharply.” While this might sound like great news, here at the Cristian Rivera Foundation we are still very much aware of the deadliness of the form of childhood brain cancer we work with known as DIPG. There is still no cure for DIPG which accounts for 10 to 20 percent of all forms of childhood brain cancer. So, while treatments have progressed for other forms of cancer, the slower progression in research for DIPG is concerning to us and all those in the DIPG community.
According to the New York Health Department, between 1976 and 2016, childhood cancer rates showed a fairly steady increase. This increase amounted to an average of 1 percent per year, and an almost 60 percent increase over 41 years. “Rates of brain and central nervous system cancers increased until the mid-1980s, stabilized, and then began to increase again in the late 1990s.” There are many theories about why this is the case, however there is one fact that is often overlooked. Diagnosis of leukemia, a form of cancer in the blood, is up 35 percent since 1975 and is now the most common form of cancer in children. “When you see an increase like that — that fast — in a short period of time, most likely it is going to be driven by some exposure to environmental factors,” said Catherine Metayer, MD, PhD in epidemiology and biostatistics, during an interview with WebMD back in 2016. While it is hard to pinpoint what exactly these environmental factors are, the National Cancer Institute has hypothesized the spike could be from exposure to substances, such as the chemicals in tobacco smoke, radiation, or even ultraviolet rays from the sun.
With childhood cancer being on the rise, it is staggering the amount of government funding that is allocated to research specifically for treating these diseases in children. Most federal funding for pediatric cancer comes from the National Cancer Institute (NCI). Kate Schafer, Director of Advocacy for CureSearch (NCI) Foundation had this to say about how much of their funding goes to childhood cancer research, “It’s a bit difficult to determine how much in any given year is spent on childhood cancer research. It is around $170 million per year.” Most of that goes toward laboratory research. The funding for pediatric cancer clinical trials actually went down between the years of 2003 and 2008 according to data from the NCI, and reached a maximum of $26.4 million per year during that time period. By contrast, data between the years of 2013 and 2018, the NCI spent an average of 545 million dollars a year on breast cancer research. This is over 20 times more spent on breast cancer alone than all pediatric cancer trials.
With this lack of funding especially for lesser known cancers such as DIPG, it often takes an individual to raise awareness and capital for research. This boils down to the heart of the Cristian Rivera Foundation. We are a group of individuals with the like minded goal of finding a cure for DIPG through our fundraising efforts. Despite the lack of support from government funding we will not stop until a cure is discovered and no family will ever have to endure the hopelessness of a DIPG diagnosis ever again.
By Trevor Dominy