Mariah Forster Olson, an ACS CAN Ambassador Constituent Team Lead (ACT Lead), traveled to Washington, D.C. this week to share her story as a childhood cancer survivor and to advocate on behalf of other patients and survivors during the 2019 Childhood Cancer Action Days.
Childhood Cancer Awareness Month: An Opportunity to Reflect on Accomplishments, Set Sights on the Future
ACS CAN is once again joining patients, families, caretakers and other public health advocacy organizations in recognizing September as Childhood Cancer Awareness Month. According to the National Cancer Institute (NCI), 15,270 children between the ages of 0 and 19 were diagnosed with cancer in 2017 and cancer remains the leading disease-related cause of death of children in the United States. ACS CAN is kicking off Childhood Cancer Awareness Month by working to raise awareness about pediatric cancer and identify new ways we can work together to advocate for policy solutions that will benefit every child with cancer and their family. We want to work to make sure children with cancer not only survive, but thrive. We’re proud of the work we’ve done over the last year to make funding for pediatric cancer research a priority issue in Congress. We also know that much remains to be done as we work to give patients and their families all the tools necessary to fight cancer and make their voices heard.
This past spring, the passion and power of our volunteers was on full display in Washington D.C. when ACS CAN joined forces with the Alliance for Childhood Cancer for its seventh annual Childhood Cancer Action Days on Capitol Hill. ACS CAN volunteers were among the more than 230 participants from 35 states who had 175 meetings with members of Congress or their staff advocating for the passage of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. The advocacy efforts of our volunteers, who shared their powerful stories directly with lawmakers and their staff, resulted in the most comprehensive pediatric cancer bill ever introduced in Congress being taken up and passed unanimously in the House of Representatives and Senate just a few weeks later. Enactment of the STAR Act is a notable step forward in the fight against pediatric cancer and will provide leading researchers with the tools they need to fight pediatric cancer. Our staff and volunteers will now focus our energy on ensuring the STAR Act is appropriately funded for years to come. Additionally, ACS CAN will continue to call for funding increases at the National Institutes of Health (NIH) that may lead to significant discoveries and breakthroughs that will help us in the fight against childhood cancers.
ACS CAN staff was also hard at work this year making sure the voices of childhood cancer patients and survivors were heard around legislative and regulatory efforts to undermine insurance coverage protections for people living with pre-existing medical conditions. Childhood cancer survivors have extremely high rates of long-term and late medical effects, and without protections against insurance discrimination, many survivors would be subject to uncertainty in their health coverage. ACS CAN staff and volunteers will continue to work to protect and strengthen the insurance protections in the law.
We have some of the most passionate and engaged volunteers across the country. Working in local communities, statehouses and on Capitol Hill in Washington D.C., we’ll continue to fight for children who have received a cancer diagnosis. Childhood cancer death rates have substantially declined in recent decades, but unfortunately not for all childhood cancers. We cannot rest on our previous accomplishments and ACS CAN, working across the country, will continue to fight for our children.