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Why do we do advocacy work?
Using our voice for children with cancer in Virginia results in a more powerful impact.
Right now, there are approximately 550 children diagnosed with cancer here in Virginia. That’s enough children to fill eighteen school buses!
Before we stepped up to start organizing advocacy efforts here in Virginia in 2018, children with cancer did not have a voice at the Virginia General Assembly, and that lack of representation showed. At the time, 0% of Virginia’s $20 million in cancer funding went toward children undergoing treatment. Through the efforts of our more than one hundred dedicated advocates across the state, children with cancer are now on the radar of our state legislators. In 2022, we secured state funding for the first time for the ASK Educational Support Navigator Program. Since then, Virginia also approved funding for pediatric cancer research. Now 11.4% are designated for children. Securing this funding is a significant step in showing Virginia’s commitment to supporting children with cancer, and that only happened because advocates shared their stories and demonstrated the need.
We work collaboratively on our advocacy efforts with the Cancer Action Coalition of Virginia and all five primary pediatric oncology and hematology treatment centers: Carilion Children’s, Children’s Hospital of Richmond at VCU, Children’s Hospital of the King’s Daughters, Inova Schar Cancer Institute, and UVA Children’s Hospital. Our advocacy efforts support all children in cancer treatment and help raise the level of care across the Commonwealth. That is why receiving and maintaining this funding is so crucial. We know that when children are supported, they succeed, and all children deserve the opportunity to succeed.
The Education Support Navigator Program is making a difference every day. In the program’s first year, 502 pediatric cancer patients and survivors received back-to-school support. Additionally, 105 educators across Virginia learned about childhood cancer and how to support children returning to school. Our program has already received national attention. It was featured at the Hospital Educators and Academic Liaison national conference and was a featured program during the Center for Disease Control’s recent visit to Virginia. We hope to serve as a model program for other states to have an even more significant impact.
Alma Morgan, ASK’s Associate Director of Education, expressed her enthusiasm for the program at this year's Childhood Cancer Advocacy Day Breakfast, saying, “We wouldn't have our six navigators across the state without you, and the impact has just been not good, it's been tremendous. Exceptional! I can't use enough terms to describe it. We have six navigators now, and when we started three years ago, we had five. One in each treatment center. As we were training them, we used the special sauce of ASK, which is about relationships with patients and families. You have to gain their trust, and you have to constantly be there at their clinic appointments… So thank you for your support. Thank you! We did, in Northern Virginia this past year, hire a new navigator. A bilingual navigator because we need them to work more with our Spanish-speaking families. So we are growing for the needs out there!”
Since 2023, the launch of our Educational Support Navigator Program, it’s been critical that we continue our advocacy efforts to help ensure support for our ASK children and families. This year, our advocacy efforts are two-fold. First, we shared the impact of our education support navigator program with legislators at Virginia’s Childhood Cancer Advocacy Day on January 23 to ensure continued funding.
Second, we want to continue to improve the lives of families in treatment, by placing our advocacy support behind efforts regarding paid family medical leave. Roughly 1 in 4 families diagnosed with pediatric cancer report losing more than 40% of their annual household income as a result of treatment-related work disruption, which doesn’t even take into account out-of-pocket expenses like traveling to and from the hospital or extra childcare at home.
The numbers behind the smiles:
Cancer-related financial toxicity remains a pressing issue for our families across the state, and paid family medical leave would help alleviate some of that and give our parents more time to care for their children during treatment. Additionally, we understand that financial hardship persists for families at least a year after therapy ends, and that is why as an organization, we remain steadfast in our commitment to supporting children with cancer and those in survivorship by providing young adult support and all around comprehensive support to our families from the moment of diagnosis, through treatment and beyond.
As Alma Morgan, ASK's Associate Director of Education, explains,
“We do a lot of work with young adults in regards to vocational opportunities. In our survivorship clinic here at the Children's Hospital of Richmond at VCU, we follow children for life. I am there every Monday and some of my patients are close to 50 years old. We have such a comprehensive team, and we do such good work.”
It’s because of advocates like yourself and the amazing support from the communities we serve, that ASK is able to lend a helping hand when our families need it the most. Together, we will continue to advocate to make life better for children with cancer and their families across the Commonwealth and help ensure they never have to face this fight alone!
