Which Way for Childhood Cancer Funding?
Childhood Cancer Survivor & Caregiver Challenges : Survey Results
Last month childhood cancer advocates were encouraged – and somewhat surprised – when President Trump announced a childhood cancer research initiative at the State of the Union address, proposed at some $500 million over ten years – or $50 million a year.
The promise of that extra funding and any new initiatives was thrown into doubt this week with the release of the Administration’s budget proposal. It recommended that the National Cancer Institute (NCI) be cut by 17% or $897 million; theoretically dwarfing any increase in childhood cancer funding.
Calling all advocates -- to the states!
In both 2017 and 2018, we conducted an online survey in partnership with the Patient Advocate Foundation. We heard from nearly 450 caregivers and survivors , and below we share a few key findings related to survivorship, financial hardship, and coverage challenges.
At the Children’s Cause, we’re using this data to support a variety of policy proposals and projects in the works. We thank all the families and survivors who are helping to inform our advocacy work by sharing their experiences and challenges. Your input makes us a stronger voice for our children in Washington and around the country.
Hope on the Horizon: Research Webinar Recap
There’s no shortage of issues that need fixing and the first instinct for many childhood cancer advocates is to look to Washington. But many issues affecting children with cancer and their families are best addressed, with more impact, at the state and local level.
Fortunately, there are scores of childhood cancer advocates working in state capitals, pushing for better treatments, access and care for patients, families and survivors. Unfortunately, they’re often working alone or with limited resources. 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…
Shutdown's Impact on the FDA
On January 30th, we hosted a webinar about the latest ground-breaking developments in childhood cancer research, with a specific focus on immunotherapy and precision medicine.
The full recording of that webinar is available at the end of this post but we wanted to share some highlights, since it was jam-packed with valuable information:
Introducing yourself to your Members of Congress
The ongoing partial government shutdown is now the longest in U.S. history, with no certain end in sight. While the impact of the shutdown is wide and far-reaching, at the Children’s Cause we are focused on the Food and Drug Administration, an agency that has a direct impact on the development of life-saving therapies for our kids.
FDA Commissioner Scott Gottlieb, MD, has stated that the agency will run out of drug approval funds sometime in February if the shutdown continues.
The kick-off of the 116th Congress has been overshadowed by the drama of the ongoing government shutdown. But that doesn’t mean Washington has come to a complete standstill, and neither have we. We’ve been busy working on our policy agenda for this Congress and we’ll have action alerts on legislation as it gets introduced.
For now, we ask that you take moment to introduce yourself to your Members of Congress and share with them your childhood cancer story.