April 2018: Action Day Brings 200+ Advocates to DC

APRIL 18 NEWS & VIEWS_header.png

200 Advocates Ask Congress to Pass STAR Act at Action Days


Group Photo Credit: St. Baldrick's Foundation
Right: Susan L. Weiner, PhD, presents at Advocate Training session

Over 200 advocates from 37 states joined together last week for Childhood Cancer Action Days, hosted by the Alliance for Childhood Cancer.

Advocates asked their Representatives to pass the Childhood Cancer STAR Act, which the Senate unanimously passed last month. The Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act is the most comprehensive childhood cancer legislation ever taken up by Congress.

You can still take action from home to back up the impact these advocates had on the Hill. Find out how.

Our task now is to get the bill to committee and onto the House floor for a vote, so we can get it signed into law as quickly as possible. Please join in this effort while we have momentum from Action Days!

Be sure you're following Children's Cause on FacebookTwitter and Instagram for the latest on the STAR Act. Thank you for helping us get this bill signed into law. 

Securing a Strong Federal Budget for Medical Research

FederalFunding_Vital_NCI_Email header.png

Fiscal Year 2018
The National Institutes of Health received a $3 billion funding increase as part of a $1.3 trillion appropriations deal passed by Congress last month. This $37 billion budget for NIH represents an 8.8% increase, the biggest percentage increase seen by the NIH in the past 15 years. President Trump signed the FY2018 omnibus into law – but has reportedly been considering a rescission package. Rescission is a process by which the president formally requests (within 45 days of a spending bill’s passage) that Congress backtrack and cut out some of what has already been signed into law.

A large and united community of public health and medical advocates spoke up to ensure strong funding for the National Institutes of Health – and now we speak up once again to protect that funding. We’re asking advocates to call, email or tweet their Senators and Representative today and urge them to defend the budget and rebuff any attempt at rescission that would put life-saving research funding at risk. Our action alert makes it quick and easy.

Fiscal Year 2019
President Trump sent his FY2019 budget request to the Hill just days after the FY2018 omnibus passed and - because of the timing - didn't include any of the funding agreements reached in the 2018 budget. Instead, the Administration's budget includes cuts to most of the health programs that children with cancer and their families rely upon.

Despite the bipartisan deal by Congress to boost domestic spending to $597 billion, the Trump budget includes only $540 billion in such funding, which puts a squeeze on NIH and NCI. In terms of Medicaid, the budget proposes various policy changes that will negatively impact the health and well-being of children and families who rely on this program. On our blog, we share a sampling of what's at stake for our community. 

Chemotherapy-Induced Hearing Loss to be Explored in PFDD Workshop


Chemotherapy-induced hearing loss in pediatrics will be the focus of an upcoming Patient Focused Drug Development (PFDD) workshop in Washington, D.C. The Children's Cause, in partnership with other childhood cancer organizations including Mattie Miracle Cancer Foundation and the Children's Brain Tumor Foundation, will host an FDA-approved PFDD meeting on September 13th.

The half-day meeting will feature panel presentations by survivors, parents, and medical specialists with an opportunity for public comment and input. This will be a chance for those affected by chemo-induced hearing loss to give the FDA the benefit of their experience. If you're interested in this meeting, please fill out the interest form so we can keep you posted on details and registration.

Quick Links | Recommended Reading

  • Larotrectinib proves 93% effective in kids: A new phase 1 clinical trial finds a new cancer drug, larotrectinib, to have a "nearly universal response rate" in treating pediatric patients with a fused gene called TRK, which is found in several types of solid tumors. (The Lancet, 3.29.18)
  • Genetic screening for leukemia improves: Researchers at St. Jude have discovered a fourth gene (IKZF1) that can predispose carriers to B-cell acute lymphoblastic leukemia. (Cancer Cell, 4.19.18)

Upcoming Events

  • Children and Cancer Forum, May 22: The Atlantic will host its second annual childhood cancer forum at the Newseum on May 22nd from 8-11am. This event brings together physicians, policymakers, activists and health care leaders to examine the state of pediatric cancer care and look towards innovations in the future. Learn more.
  • CAC2 Annual Summit, June 12-14: The Coalition Against Childhood Cancer (CAC2) is hosting its annual Summit and membership meeting from June 12-14th in Seattle, Washington. Learn more.

Join us for Jazz in June! Tickets are now on sale.
Join us in Washington, DC on June 18th for a reception featuring jazz music from the Eric Byrd Trio! Our Jazz in June event will bring together new and seasoned childhood cancer advocates from 6:30 - 9:00pm at the Hamilton Loft near Metro Center. Tickets are now available, including complimentary admission for childhood cancer survivors.

Jessica Kean