The Lowdown: Childhood Cancer Action Days, #StepUp and the STAR Act
During the month of June, our Executive Director here at NNCCF, Debbie Strickland, and some members of NNCCF families traveled to Washington D.C. for the Childhood Cancer Action Days. Here is why they went and what Debbie had to say about the trip:
What happens on Childhood Cancer Action Days?
“Each year we advocate for research appropriations, we need money,” Debbie said. “We always bring a family, we talk about how access to health is difficult, we talk about treatment, we talk about research.” Debbie also said that bringing a NNCCF family to Washington D.C. helps get the attention of politicians by “shaking their core” and reminding the politicians that childhood cancer affects real people and real families.
What is the #StepUp initiative?
As stepupforchildhoodcancer.com states, the social media hashtag “#StepUp” encourages all kinds of people, from those involved with cancer organizations to community members, to advocate for more childhood cancer research funding. In particular, organizations like NNCCF are asking for people to “step up” and put support behind the STAR Act.
What is the STAR Act?
Survival, Treatment, Access,and Research is what “STAR” stands for. The Act has yet to be formally introduced pending strong bipartisan support in the House and Senate to ensure that it will be in the strongest position to be voted into law.
This act is asking for all of the currently “fragmented” data about childhood cancer to be put together, to be compiled nationally. Data is available for all different kinds of childhood cancers like brain tumors, leukemia, and others, but the data has not been assessed as a whole. Specifically, baselines need to be set and understood for things like overall childhood cancer survival rates and how different childhood cancers compare to each other. This will help researchers and those wanting to create legislation better understand how the nation needs to fight childhood cancer. Once this happens, asking for research funding will be more efficient and more compelling than asking for money is right now, with research statistics and data scattered in different states and with different organizations. In essence, creating one, unified data and research effort will help to further the research cause for all types of childhood cancer.
What is the reason people lack awareness and education about the need for childhood cancer research?
Debbie answered, “If you’re looking at numbers in comparison to adult cancers, it’s a small percentage.”
With this in mind, Debbie believes that the government will hear out the largest entity, which, in this case, is adult cancer research. For groups like us, this is an important obstacle. As Debbie said, “Our numbers are small, but we don’t want our voice to go away.” For this reason, having a presence each year in Washington D.C. is important. Meeting with politicians is vital to display the passion and support that back the childhood cancer cause.
What can people do to improve awareness and education about childhood cancer research?
Debbie said, “It’s a beautiful thing that we’re in our state with a lot of our representatives. If you’re down in Carson City eating at a local restaurant, it’s likely that one of our senators is going to be sitting next to you.” Because of this proximity to our legislators, Debbie stressed the importance of letting those politicians know that groups like NNCCF have an impact in our community. If you see a politician. Don’t hesitate to bring up issues like the STAR Act, childhood cancer, or even NNCCF. It is important to let those politicians know that childhood cancer matters in the Northern Nevada community.
NNCCF would like to thank Barrick GOld for making this Washington D.C. trip possible.