Childhood Cancer Advocacy 101
What if it were your child? God help you…you’d discover very quickly that the medical research system doesn’t consider your child’s life investment-worthy, that no therapies have been developed for this disease for decades, and that urgency of need and potential years of life lost are not factored-in to the equation of how our tax-dollars for cancer research (National Cancer Institute) are spent. In other words, you are on your own. There are many arguments used to justify this neglect of children with the deadliest cancers by our medical research system, the foremost retort to your queries being: “the numbers aren’t great enough for investors.” DIPG (diffuse intrinsic pontine glioma) does not discriminate; we have not done enough research to know what exactly causes it. There is no cure, but there is a regular frequency of incidence of children diagnosed with the disease each year, year in, year out.
DIPG is literally cancer’s death-row for children. It’s a poignant example of how childhood cancers are marginalized as rare and neglected for research despite the fact that it’s responsible for so much death, and that such research has the potential to accelerate the process of finding cures for cancer. Roughly 80% of pediatric brain tumor deaths, the leading cause of death in children with cancer, is attributed to DIPG. Hardly an irrelevant disease, the families of the afflicted have been made to feel rare, freakish, and unworthy of a concerted effort to be helped. There are obviously gaps in our system where accountability is not only needed, it is now being demanded by parents and childhood cancer organizations across the United States. I’m one of them. I lost my son Jack to DIPG in the summer of 2012, and am committed to ensuring change in the reality these families experience.
Briefly, all the childhood cancer awareness bills in Congress for the last 10 years containing provisions for the analysis of money-flow at NCI have died. What has been pieced-together from the wreckage is a comprehensive bill called the STAR Act with provisions for Survivorship, Treatment, Access, and Research for childhood cancer, minus the accountability factor. The DIPG Awareness Resolution HRes586, written by Congressman Steve Knight (R-CA-25)and introduced 1/13/2016, does what all the other “hard-law” bills cannot: it asks for greater consideration for low-survival rate cancers (urgency) and years of life lost (children) with the NCI research grant process. HRes586 raises awareness for DIPG and childhood cancers in general, designating the 4th week of May as National DIPG Awareness Week, giving hope to the kids fighting hard right now to stay alive and finally honoring the thousands of young children who have faced death bravely with scarce attention for many, many years. Please encourage friends and family across the country to ask their Representatives to sign it; there are easy instructions at www.hres586.com. Thank you.