What's New

We look forward to seeing you in Washington, DC next June.  

 

If you have any questions, please contact amanda.schwartz@asco.org. 

The Alliance for Childhood Cancer hosted a booth this weekend at the American Society of Clinical Oncology's (ASCO) 47th Annual Meeting in Chicago, Illinois as part of the ASCO Sponsored Patient Advocates section of the Exhibit Hall. The booth was an opportunity for Alliance members to display materials to the nearly 30,000 attendees and connect with other patient advocates.

Materials were available from:

• The American Childhood Cancer Organization
• The Association of Pediatric Oncology Social Workers
  
• Chai Lifeline
• The Children's Cause for Cancer Advocacy
  
• CureSearch
• Leukemia & Lymphoma Society
• National Children's Cancer Society
• St. Baldrick's Foundation

Thanks to all the Alliance Members who participated!

The Alliance for Childhood Cancer held its Spring meeting on Tuesday, March 16th in conjunction with National Childhood Cancer Advocacy Day.  At this meeting, the Alliance welcomed Dr. Peter Adamson, Chair of the Children's Oncology Group (COG), who presented the challenges facing COG due to budget concerns at the National Cancer Institute (NCI) and the consolidations scheduled for the NCI cooperative groups. As part of its advocacy plans, the Alliance is calling for stable and adequate funding for the COG in order to develop therapies that alleviate late-effects experience by childhood cancer survivors. 

Dr. Michael Link, President-elect of the American Society of Clinical Oncology (ASCO) reported on the growing problem of oncology drug shortages. Dr. Link noted that while there has been great progress in the treatment of pediatric cancers, recent drug shortages are now raising concern that physicians cannot deliver proven effective therapies to patients with pediatric cancer. The Alliance hopes to advocate for solutions that alleviate the problem in the future. 

Following the meeting, some Alliance members joined CureSearch, the Association of Pediatric Oncology Social Workers, the Children's Cause for Cancer Advocacy, Kids V Cancer, and the Leukemia & Lymphoma Society on Capitol Hill for the National Childhood Cancer Advocacy Day.  These Advocacy Day participants stressed the importance of sustained funding for cancer research, informed lawmakers about the introduction of the Creating Hope Act of 2011 (S.606), and discussed the expected reintroduction the Childhood Cancer Survivorship and Quality of Life Act some time this Spring at nearly 150 meetings.

The Alliance for Childhood Cancer held its most recent meeting on September 22 at the headquarters of the American Society of Clinical Oncology.  At this meeting, Craig Lustig, Executive Director of Children’s Cause, completed his second term as co-chair of the Alliance.  George Dahlman, Senior Vice President of Public Policy at the Leukemia and Lymphoma Society, was elected as the Alliance's new co-chair. Primary topics of discussion included:

• Congressional action on health care reform and its potential impact on coverage for pediatric cancer care
• Ongoing efforts to secure additional congressional co-sponsors for H.R. 2109, the Childhood Cancer Survivorship Research and Quality of Life Act
• Efforts to plan a briefing with the new congressional Pediatric Cancer Caucus

   

Alliance members also spent the afternoon making visits on Capitol Hill to encourage members of the House of Representatives to co-sponsor the childhood cancer survivorship legislation, as well as to become a member of the Pediatric Cancer Caucus.  Since the Alliance meeting, the bill has gained eleven new co-sponsors (for a total of 37).  Five of those new co-sponsors were visited by Alliance members

On July 29, the Alliance for Childhood Cancer sent a letter to all Representatives requesting that they join the Pediatric Cancer Caucus.

The mission of the Pediatric Cancer Caucus is to serve as a clearinghouse for information on pediatric cancer and a bipartisan forum to aid members of Congress in working together to address pediatric cancer issues.  The caucus raises awareness about pediatric cancer, advocates in support of measures that prevent the pain, suffering and long-term effects of childhood cancers, and works toward the goal of eliminating childhood cancer.

The goals of the Pediatric Cancer Caucus are to:

·         Improve pediatric comprehensive cancer care and the quality of life for children with cancer

·         Support increased funding for childhood cancer research through the NIH, the CDC, and other federal research agencies

·         Encourage collaboration between public and private research organizations to further research on childhood cancer

·         Promote public policies that address the health care needs of the pediatric cancer survivors

·         Support the training of skilled pediatric cancer specialists