Advocating for Change
From the desk of Anthony Trimarchi.
My daughter, Taylor, was diagnosed with a brain tumor in 2017. That was the first among many moments of complete shock as my family and I were thrown into discussions around treatment options, survival rates and the long-term side effects of aggressive surgery, chemotherapy and radiation. The initial shock was followed by a series of additional eye-opening revelations as I began researching treatment options, looking for advancements in the science so I could select the most innovative protocols available to her.
What I discovered, instead, was a tremendous lack of awareness and funding for childhood cancers in general, and unique challenges in the research landscape for pediatric brain tumors, in particular. My eyes were opened in an instant when I connected with various medical teams, researchers, and families, all of whom echoed the same message about the need for increased research. I couldn’t believe what I was hearing, so I began hosting fundraisers of my own in an effort to help support the research being done by the Children’s Brain Tumor Project at Weill Cornell Medicine to pay tribute to my daughter and all she had endured.
Thankfully, Taylor has finished treatment and she is doing extraordinarily well, but that doesn’t mean I’ve lost sight of the thousands of children with brain cancer who have not had/may not have the same outcome. Instead, I remain an active advocate. I recently worked closely with local representative Nita Lowey [D-NY17] to fight for the inclusion of a formal request for increased research funding in the appropriations committee report accompanying H.R. 2740, a bill that sets overall spending limits for the next year and was passed by the House of Representatives on June 19, 2019.
The bill is now under review by the senate.
SpendingTracker.org estimates H.R. 2740 will add $43.8 billion in new spending through 2029, which reinforces the notion that the inclusion of a statement specific to pediatric brain tumor research support may influence an increased government spend in this area. I am not alone in these efforts, and I am so proud of everything that has been accomplished by advocates in the childhood cancer community — where the parents of children in treatment are often running marathons, hosting auctions and selling silicone bracelets in efforts to fund the research that may help their children. That alone demonstrates just how little government funding is currently available for childhood cancer research.
Less than 4% of the national budget for cancer research is designated to research all pediatric cancers, a percentage which gets even smaller when divided across the seemingly countless types of cancers that are unique to children. That leaves a tremendous gap to fill by nonprofit organizations large and small such as the Children’s Brain Tumor Family Foundation, the Cristian Rivera Foundation, the McKenna Claire Foundation and the Ty Louis Campbell Foundation, hundreds of which support the majority of these research projects through tireless fundraising efforts.
With input from my daughter’s neurosurgeon, Dr. Mark Souweidane, Vice Chairman of Neurological Surgery and Director of Pediatric Neurosurgery at Weill Cornell Medicine, I submitted the following paragraph for inclusion. The statement can be found on page 81 of the appropriations committee report, where specific references are made pertaining to the National Institute of Health (NIH).
The committee recognizes that brain cancer remains the most fatal of all pediatric cancers. Despite progress in other diseases, pediatric brain cancer survival rates have not improved for decades and has lagged behind the strides made in other cancers. The majority of children who survive may experience lifelong impairments and disabilities that result from high levels of toxicity associated with treatment. The committee strongly encourages NIH to expand funding on research on pediatric brain cancer, including but not limited to drug delivery methods and new therapies with reduced levels of toxicity and long-term complications.
There are few official statements addressing pediatric brain tumors that are as clear and accurate as the one that congresswoman Nita Lowey helped deliver to the NIH. It seems anyone reading these simple facts would be compelled to do more, and I will not stop advocating until they do.”
Anthony is doing something.