“The Impact of Pediatric Cancer on children and families: why we need to Change the Landscape of Pediatric Cancer Research”
Pediatric Cancer Caucus for allowing me to speak today on behalf of children diagnosed with cancer.
I am the Founder and Executive Director of Kids v Cancer but I speak to you, first and foremost, as a parent who has recently lost a child to brain cancer. My son, Jacob, was your typical, wonderful eight-year old boy when he was first diagnosed: a sweet kid, a good brother, an able student, an enthusiastic athlete, and a passionate rock-and-roll keyboard player and vocalist. After some unexplained morning headaches and nausea, we were told that Jacob had medulloblastoma, a form of pediatric brain cancer.
Jacob endured several surgeries, six weeks of daily radiation and many difficult chemotherapy protocols. He suffered severe neurological and cognitive impairments, including an inability to speak or, for a time, move. He was wheelchair bound, he lost gross and fine motor skills, he experienced significant memory deficits. Jacob had unmanaged pain, anorexia, nausea, baldness and multiple infections. He was hospitalized for months at a time. And still, unbelievably, he never complained and just focused on his friends, his family, and attending school as much as he could. Jacob died a year and a half ago at age 10.
During our hard-fought efforts to save our son, we came to realize that Jacob and children with pediatric cancer are at a serious disadvantage when it comes to research for treatments and a cure.
In Jacob’s honor and for every other child with pediatric cancer as well as those who have not yet been diagnosed, I started Kids v Cancer, a nonprofit dedicated to changing the landscape of pediatric cancer research by providing support to the pediatric cancer research community.
At the heart our efforts are the very sobering statistics on the allocation of resources to combat pediatric cancer.
The FDA has had an initial approval of only one pediatric cancer drug in the past 20 years. The National Cancer Institute spends less than 4% of its budget on research for pediatric
cancers. And the incidence of invasive pediatric cancers has increased by 29% over the past 20 years.
If you look at these statistics, you can see there is clearly a crisis in the system that your Caucus should be commended for highlighting today.
Our goal is simple: to bring pediatric cancer researchers the resources they need to find better treatments for childhood cancers. Our efforts are focused in three areas: access to new drugs, tumor tissue and funding.