The Importance of Advocacy
Advocacy is vital in the fight against childhood cancer. Huge disparities in funding exist at the federal level with both the National Institutes of Health (NIH) and the National Cancer Institute (NCI) with childhood cancer receiving less than 4% of the federal cancer research budget. This number is especially troublesome considering that cancer is the number one disease-killer of children. Every day approximately forty-six children are diagnosed with cancer. Even given those stats, only three drugs have been FDA-approved for childhood cancer. In comparison, adult cancers have had over 900 drugs approved. More often than not that leaves children and their families with little-to-no options for treatment to fight cancer other than clinical trials.
Clinical trials are typically the only hope for many fighting childhood cancer. With over 12 types of childhood cancer and 100 sub-types, customized and rigorous treatment options are needed just based on the variety and complexities of the many types of childhood cancer. Medical research produces and develops more effective and alternative forms of treatment options for children with cancer. The federal cancer research budget supplements funding to labs throughout the country who are working on developments that can potentially yield cures.
Due to these facts and statistics and the overall lack of funding to help create more curative outcomes for children, Chase After a Cure has decided advocacy is a vital pillar in chasing away childhood cancer. CAAC strives to continue to push our local and federal resources to do more for our children. When medical research funding is slashed 24% in the last ten years, we cannot simply stand-by and let these children suffer. We have to step up and do more. Over the last few years, CAAC has stepped up with a number of trips to Capitol Hill and many visits to Congressional and Senate offices to compel our representatives to make sure robust and sustainable funding is available to medical research labs not only in South Carolina but nationwide. CAAC not only demands more funding specifically for childhood cancer, but more legislation that supports better treatment options to fight cancer and less regulatory hurdles. The more hurdles hospitals, oncologist, and researchers have to face, the less time children have to receive life-saving treatments. While the clock can always tick in Washington, it cannot tick on our children and CAAC will continue to support bi-partisan efforts for better funding and better treatments.
This past year, CAAC supported several efforts to help increase federal childhood cancer research funding including the Star Act. Click here for more info on the Star Act. CAAC also supported the Advancing Hope Act in collaboration with over 100 childhood cancer organizations. The Advancing Hope Act is a crucial piece of legislation that accelerates drug development. Additionally, CAAC joined forces with other childhood cancer organizations to support the $30 million appropriation request for a Peer-Reviewed Young Adult, Adolescent, and Pediatric Cancer Research Program within the Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP). This funding helps to benefit young adults with cancer directly. More Info CAAC also urged our representatives for their support of the 21st Century Cures Act as well as a very important act called The Open Act:
“The OPEN ACT would bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to “repurpose” major market drugs for the treatment of life-threatening rare diseases including pediatric cancers. The OPEN ACT would make an “Orphan Product Exclusivity Extension” available to provide an additional six months of market exclusivity to the patent life of the major market drug being repurposed, so long as the sponsor company establishes that the therapy is designated to treat a rare disease and obtains a rare disease indication from the Food and Drug Administration (FDA).” –Every Life Foundation. More Info
Overall more needs to be done to give kids with cancer a chance. We have to fund research for better treatment options. We also have to make sure drugs and treatment options are also more affordable. All in all, we can only urge such entities like the the FDA, NIH, and NCI to cut the tape where it needs to be cut and boost funding where it needs to be boosted with your help! When childhood cancer is still the reigning number one disease killer of children, less than four percent is unacceptable! When 95% of children who survive childhood cancer experience secondary, long-term side effects that can also result in death, the disparities in funding is unacceptable. The many reasons stated above are why advocacy plays such a vital role in the fight against childhood cancer. To continue to advocate, we need your help in lending your voice and supporting the ongoing calls to take action to compel Congress to do more. We truly hope you will continue to help us Chase Away Childhood Cancer!