February Bulletin: State Advocacy Opportunities and more
Announcing New State Advocacy Initiatives
In childhood cancer advocacy, we often look to Washington, DC. But many issues affecting children with cancer and their families are best addressed, with more impact, at the state and local level.
There are scores of childhood cancer advocates working in state capitals pushing for better treatments, access and care for patients, families and survivors. To support those advocates, Children’s Cause has launched a state advocacy program offering “air cover” and coordination to those working in their state capitals. In a new section of our website, we’re highlighting state legislation, pending bills, resources and models to help give state advocates the ammunition needed to add your voice to existing efforts – or to start one of your own.
First up, we've launched action alerts in two states, New York and Pennsylvania, on the issue of remote technology for critically ill students. Remote technology eliminates the isolation that kids with life-threatening conditions like cancer face while missing school to undergo treatment. Maryland enacted similar legislation called Peyton's Law, named after a girl with cancer who used a "telepresence robot" to stay connected to her classroom while undergoing radiation therapy.
Stay tuned about these and other bills around the country by checking back often at childrenscause.org/state-advocacy.
Read More: Blog post by CEO George Dahlman
College Scholars Program: Application Deadline March 31
The Children’s Cause for Cancer Advocacy is again offering an opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. Award recipients will receive a scholarship of $2,000 via our College Scholars Program. The deadline to apply is March 31, 2019.
Our College Scholars Program includes a requirement of completing a childhood cancer advocacy project of the scholar’s choice. Projects could be as extensive as a summer internship in our DC office to something more local, like organizing an awareness event in your hometown or mobilizing other students at your school in a letter-writing campaign. Your creativity is encouraged, and you’ll receive mentorship and support from the CCCA team toward completing your chosen project.
Learn more and apply here.
International Spotlight on Childhood Cancer
This year's International Childhood Cancer Day (February 15th) focused on an awareness campaign around palliative care and reducing the global mortality rate of pediatric cancers. Organized by Childhood Cancer International (CCI), the 2019 campaign built on a new World Health Organization initiative to eliminate all pain and suffering of children fighting cancer globally and to achieve at least 60 percent survival for children with cancer by 2030.
Following International Childhood Cancer Day, a new study was published in Lancet Oncology that used a simulation model to estimate that almost half of all children with cancer globally are never even diagnosed. The researchers found that an estimated 49% of childhood cancers in south Asia and 57% in western Africa are likely undiagnosed -- and untreated.
Action Days is March 26 & 27: Still Time to Register
There's still time to sign up to join the Children's Cause and the Alliance for Childhood Cancer for the 8th Annual Childhood Cancer Action Days on March 26th and 27th in Washington, D.C.
Issues and advocacy training will be held on Tuesday, March 26th at the Renaissance Arlington Capital View Hotel in Arlington, Virginia. The following day will include pre-arranged meetings with Members of Congress and their staff on Capitol Hill to discuss important childhood cancer issues currently before Congress.
Learn more and register.
Register for our March 27th Webinar
Registration is now open for our March 27th webinar, where we will revisit the externally-led, FDA-approved Patient Focused Drug Development (PFDD) meeting held in September, focused on chemotherapy-induced hearing loss in pediatrics. In this March webinar, we'll provide an update on progress since that meeting -- and next steps.
For those who were able to join us in September, we invite you to join us again for this follow-up presentation, where we'll share highlights from the formal Meeting Report. If you were unable to join us for the original meeting but you're interested in the topic of chemo-induced hearing loss, please know that we'll start with a recap to get you up-to-speed. Register here.
Our last webinar focused on the latest ground-breaking developments in childhood cancer research, with a specific focus on immunotherapy and precision medicine. It was an hour jam-packed with valuable information, so we've got highlights on our blog -- plus the full recording: Catch up on what you missed.
Trump Administration Calls for $500 Million Boost for Childhood Cancer Funding
Earlier this month, President Trump included childhood cancer in his State of the Union address, calling for a $500 million increase in childhood cancer funding over the next decade.
A follow-up conference call by the Administration revealed that this funding will likely be related to a big data initiative that expands on existing efforts to share and aggregate childhood cancer data. We are looking forward to seeing the Administration's budget for a more complete picture, which is expected to be delivered to Congress on March 12.
We feel encouraged that the Administration has made this a priority, recognizing the toll of childhood cancer and the critical importance of addressing its impact on families across the country. We'll work diligently with Congress to ensure that funding for childhood cancer research and access is included in the FY 2020 budget.
Take Action in the New Congress
Legislation that we support is starting to be introduced - or re-introduced - in the new Congress. So we're introducing our 2019 Action Center, where you can learn about pending legislation that could have an impact on children with cancer -- and take action to get these bills passed into law:
https://www.childrenscause.org/actioncenter/