White House Briefing With Pediatric Cancer Advocates

As part of National Childhood Cancer Awareness Month, the National Cancer Institute(NCI) and the White House teamed up to host a briefing with pediatric cancer advocates at the White House on September 19^th.

The briefing featured a keynote address by NCI Director Harold Varmus, presentations by  prominent cancer researchers, and a discussion with advocates moderated by Max Wallace, CEO of Accelerate Brain Cancer Cure and chair of the NCI Council for Research Advocates(NCRA).

Dr. Varmus addressed the challenges facing pediatric cancer research and the progress being made in the areas of immunotherapy and genomics.  He announced preliminary plans for a pediatric MATCH trial, which will use DNA sequencing to identify children with advanced tumors who could benefit from therapies targeted at the errors causing their tumors.  He urged advocates to push for more targeted, groundbreaking research projects that NCI could fund.

In his NCRA leadership role, Wallace moderated a discussion with advocates on ways to work together more effectively to support pediatric cancer research.  Advocates were challenged to chart new, collaborative paths and steer clear from the fractionated, disease specific advocacy efforts of the past.   Wallace invited the group to attend the NCRA public meeting  on October 21 in Bethesda, MD. 

At the briefing, NCI announced its newest two-year appointment to the NCRA:  Dr. Greg Aune of University of Texas Health Science Center San Antonio, a childhood cancer survivor and pediatric oncology researcher.   At age 16, Dr. Aune was diagnosed with Hodgkin’s Lymphoma and was successfully cured of his disease after undergoing one year of chemotherapy and radiation treatments.  His personal cancer experience led him down a path to becoming a pediatric oncologist and physician scientist.  Dr. Aune is interested in getting industry more involved in pediatric drug development and his research centers on the basic science of survivorship.

The NCRA provides advice to the NCI Director, with respect to promoting research outcomes that are in the best interest of cancer patients.  In the past year, the NCRA has developed an initiative to bring more focus to pediatric cancers.  Council members dedicated a full meeting of the group to the topic and hosted a pediatric advocacy discussion with leaders of the NCI’s pediatric research and clinical trial programs.  NCRA also recommended that NCI add a pediatric cancer advocate to the Council membership.