October Bulletin: The Latest in Childhood Cancer Policy & Research
Take Action to Improve Care for Kids on Medicaid
Lawmakers have the opportunity to improve care for kids with complex medical conditions by supporting two pieces of legislation currently making their way through Congress: the Accelerating Kids’ Access to Care Act and the Advancing Care for Exceptional Kids Act.
We estimate that approximately 1/3 of the nation's children with cancer are covered by Medicaid. Under the current Medicaid system, parents of children with multiple, life-threatening disabilities struggle to coordinate the complex care of their kids.
We've got more information about these two pieces of legislation on our website, along with opportunities for you to take part in our action alerts on these bills to easily send letters to your Members of Congress seeking their support.
Small change for you: Game changer for us.
New this month, you can help children with cancer, survivors and their families just by donating your spare change! The RoundUp App securely and automatically "rounds up" the change from your credit and debit card purchases. For example, if you buy a cup of coffee for $2.75, a quarter would come to us in support of our fight against childhood cancer.
The Round-Up App is available through the Apple and Google Play stores. You can even set up a monthly cap for a max donation, if you'd like. Learn more at www.childrenscause.org/roundup.
The consistency of this kind of monthly support - even through small amounts of a few cents at a time - allows us to better plan for the future. Thank you for your continued support and generosity.
Managing the Financial Stress of Childhood Cancer
Thank you to Kathleen Gallagher of the Patient Advocate Foundation for manning our shared poster presentation at this month's 2018 ASCO Quality Care Symposium!
The data presented comes from a joint survey conducted last year by the Children's Cause and the Patient Advocate Foundation (PAF). The survey sought to identify financial challenges in access to care, such as insurance barriers, coverage limitations and denials, high copays and extraordinary out-of-pocket costs.
A total of 343 respondents completed the 2017 survey, evenly split between caregivers and survivors.
Among caregivers, one-third reported insurance denials for treatment, and 44% reported some level of financial hardship. Among the 44% of respondents reporting financial hardships, 4-in-10 had annual out-of-pocket costs exceeding $5,000. Beyond medical expenses, respondents identified employment and transportation costs, with 87% reporting compromised work schedules and over half reporting trouble getting their child to and from appointments.
For survivors, 27% reported not receiving follow-up care at a late effects clinic, with 1-in-4 reporting that their cancer care impacted their ability to pursue higher education and 30% reporting that the cost of their medical care impacted their career course or job choice.
We have just completed another round of surveying families and will be incorporating this new data to build upon what we learned last year and continue to refine our policy efforts accordingly.
Abstract from ASCO Meeting Library→
Poster Presentation →
Quick Links | Recommended Reading
Study finds Urban and Rural Rates of Childhood Cancer Survival are the Same (Washington University in St. Louis, 10.22.18)
Why Black and Hispanic Kids are More Likely to Die of Some Cancers (U.S. News, 10.15.18)
Liquid Biopsy may Reveal Treatment Response in Pediatric Brain Tumors (Journal of Clinical Pathways, 10.15.18)
The Next Frontier in the Battle against Childhood Cancer - Genetics and Genomics (Baylor College of Medicine, 10.9.18)
vote for kids on November 6th
Election Day is just one week away, on Tuesday, November 6th. The 116th Congress is likely to tackle several issues that could have a big impact on children with cancer and childhood cancer survivors, so we hope you'll make your voice heard through your ballot.
If you consider yourself a "health care voter," the non-partisan Kaiser Family Foundation provides this overview of Key Issues and Races to help you be a more informed voter around issues like pre-existing conditions and Medicaid expansion.
To double-check your state's voting policies or your registration status, visit the Rock the Vote resource guide.
The Children's Cause is tentatively planning to hold a webinar in early December to explore how the outcome of the Midterms may impact the next legislative session. Stay tuned for more details as we have them available!