ACE Kids Act Signed into Law
The President signed the ACE Kids Act into law this month, as part of theMedicaid Services Investment and Accountability Act of 2019.
The Advancing Care for Exceptional Kids Act will improve care for approximately two million children with medical complexities in the Medicaid program. We estimate that approximately 1/3 of the nation's children with cancer are covered by Medicaid.
The bill will provide more consistency for children with medical complexity as they often need to travel across state lines for care, which currently results in coverage issues since Medicaid coverage may differ from state to state. The Children's Cause joined the nation’s leading children’s hospitals, along with the Children’s Hospital Association, in supporting this legislation.
Providing children with complex medical conditions enrolled in Medicaid the best possible care is a national challenge, and passage of this legislation brings us closer to ensuring these vulnerable children receive the care they need.
Survivor Scholarship Recipients Announced
We are excited to introduce the 2019 class of our College Scholars Program! We congratulate Amelia Corl and Isha Kunnath, chosen from among a competitive field of applicants.
About the College Scholars Program: Children’s Cause offers an annual opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. College Scholars, who receive a $2,000 academic scholarship, agree to complete a project of their choosing related to childhood cancer advocacy.
Meet Amelia: Amelia was an 18-year-old freshman at William & Mary when she suddenly found herself thrust into the world of cancer with a diagnosis of Hodgkin’s lymphoma. This May, Amelia graduates as a survivor and an advocate; this fall, she'll begin her graduate studies at George Washington University. For her College Scholars project, she plans to start up a new student organization for survivors of serious childhood illnesses like cancer and others managing chronic diseases like diabetes. Amelia’s organization will be a support group but also an advocacy network that works to tackle policies around medical leave, student accessibility, and student health resources — finding solutions to the same problems that plagued her as a patient and student.
About Isha: Isha was diagnosed with Pre-B Acute Lymphoblastic Leukemia in 7th grade. As a high school senior, she's taken courses in DNA and has a research-based internship under her belt, working toward the goal of becoming a biologist and cancer researcher. This fall, she’ll begin her undergraduate studies as a biology major at the University of Virginia. To combat social isolation faced by pre-teens and teens with cancer, Isha wants to create an online community for 10-18 year old patients and survivors.Isha’s program will include a website with message boards and chat rooms to connect kids with shared interests. In addition to making peer connections, she also wants to create a mentorship component that connects these pre-teens and teens with adult survivors of childhood cancer.
Find out more about Amelia and Isha and the projects they'll be taking on this summer and fall: Meet Our 2019 College Scholars.
Childhood Cancer Advocates Collaborate at AACR Annual Meeting
Childhood cancer advocates, including our founder Susan L. Weiner, were among the thousands of oncology experts in attendance at this month's American Association for Cancer Research (AACR) Annual Meeting in Atlanta.
Susan was part of a major symposium panel on pediatric oncology focused on the global potential of the ACCELERATE multi-stakeholder platform. This session featured representatives from FDA, the Pediatric Cancer Working Group and international stakeholders.
The ACCELERATE program provides a transparent forum to tackle overarching issues in the development of innovative therapeutic medicines with the goal of improving global outcomes for children and adolescents with cancer. Dr. Weiner serves on the ACCELERATE Steering Committee, as one of just three committee members from the United States.
The Steering Committee hopes to one day bring a Pediatric Strategy Forum to the U.S. — a goal made closer by this new exposure at AACR.
At the same session, Dr. Greg Reaman of the FDA described the RACE for Children Act and credited the childhood cancer advocacy community for working collaboratively over many years to achieve the 2017 passage of this landmark legislation, designed to increase kids’ access to new cancer drugs.
Other coalition achievements featured at AACR included a poster presentation by Alliance for Childhood Cancer Chair and St. Baldrick’s Advocacy Director Danielle Leach on the Childhood Cancer STAR Act, and a poster presentation by CAC2 President Vickie Buenger on the power of collaboration and cooperation in the childhood cancer community.
Take Action on NCI Funding
Congress returns to Washington this week after a two-week Easter recess and will resume budget talks for fiscal year 2020. Now is the time to emphasize to your Senators and Representative the life-saving importance of robust funding for the National Institutes of Health, including the National Cancer Institute (NCI). We've made it easy for you to do just that with the top action alert on this page.
Talking Points on NCI Funding:
The Trump Administration has called for a 17 percent cut to NCI funding for fiscal year 2020, which would have a devastating impact on cancer research and significantly delay progress toward reaching cures.
Cancer remains the number one disease killer of children, and some pediatric cancers remain terminal upon diagnosis.
The vast majority of childhood cancer research is funded by the NCI, which provides grants to researchers and supports cooperative groups that test new treatments in clinical trials.
- "Experts applaud $500 million proposal for pediatric cancer research but say more is needed" (HemOnc Today, 4.8.19)
- "The power of pediatric cancer research" (Danielle Leach - The Hill, 4.12.19)
Children's Cause Can Help with Graduation
Instead of mailing graduation announcements this spring, consider sending them online. There are several great designs, and Children's Cause receives a donation for every one you send via EcoCards.
We can also work with you to create a custom donation form for special occasions like graduations, birthdays or bar mitzvahs. Learn more.
Quick Links | Recommended Reading
Air pollution and childhood cancer survivors: "The research...found a strong connection between those who had survived childhood cancer and those being hospitalized for breathing problems. Most of the episodes, the study found, came within three days of a major bad air event — primarily inversions, which impact the Salt Lake Valley in the winter months." (The Salt Lake Tribune, 4.23.19)
Global incidence rates in children under 5: "The study found in children under 5 years, cancer rates increased for both common types of childhood leukemia, one brain tumor subtype, neuroblastoma and hepatoblastoma." (University of Minnesota, 4.22.19 / JNCI Cancer Spectrum)
Proton therapy and neuroblastoma: "Researchers analyzed the largest cohort to date of pediatric patients with high-risk neuroblastoma treated with proton radiation therapy, finding both that proton therapy was effective at reducing tumors and demonstrated minimal toxicity to surrounding organs." (Children's Hospital of Philadelphia, 4.10.19)
Survivors and stroke risk: "In addition to the dose level of cranial radiation therapy that increases stroke risk up to 11 fold, variants on a chromosomal region called 5p15.33 increase risk approximately three-fold overall. ...This is the first study to link the chromosomal region with an increased risk of stroke." (St. Jude, 4.2.19)
Jazz in June Tickets on Sale
We invite all of you in Washington, DC, Maryland, and Virginia to join us on Monday, June 17th at the Hamilton in Washington, DC from 6pm - 8pm. It promises to be a terrific evening of music, food, fun and friends. And you don't want to miss our silent auction this year -- especially foodies, sports fans and adventurers!
Tickets are now available, at this link. Get yours today!