Alliance Holds Fall Meeting in Conjunction with Congressional Visits
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
Status of
funding for the National Institutes of Health
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.
Alliance Sends Pediatric Cancer Caucus Letter
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
otherfederal research agencies
·Encourage
collaboration between public and private research organizations to furtherresearch on childhood cancer
·Promote
public policies that address the health care needs of the pediatric cancersurvivors
·Support
the training of skilled pediatric cancer specialists
St. Baldrick’s Foundation Joins the Alliance
St. Baldrick’s Foundation became the newest member of the Alliance for Childhood Cancer when the organization’s application was accepted by the Alliance at its May 2009 meeting. St. Baldrick’s Foundation mission is to raise awareness and money for childhood cancer research. St. Baldrick’s organizes the world’s largest volunteer driven fundraising event for childhood cancer research, and has shaved over 72,000 heads and raised over $50 million since its inception in 2000. To learn more about St. Baldrick’s, visit www.stbaldricks.org. The Alliance welcomes its newest member.
Alliance Releases Principles of Health Reform
The Alliance for Childhood Cancer has released it's Principles of Health Reform in order to ensure that those affected by Childhood Cancer are not forgotten when Congress and the White House work reform health care.
These principles include the need for the health care system to be reformed to
ensure that cancer survivors will not be denied coverage due to their cancer
diagnosis, that survivors of childhood cancer have access to comprehensive and multi-disciplinary follow-up care, and that cancer survivors and their families have access to quality cancer care without unreasonable and bankrupting expense.
Childhood Cancer Survivorship Research and Quality of Life Act of 2009 Introduced by Reps Speier and Bono Mack
The
bill, also known as the Childhood Cancer Survivorship Act, would lead to
improved health for the growing number of survivors of childhood
cancers by improving and expanding the delivery of medical and
psychosocial care to survivors of childhood cancer.
Specifically, the legislation would:
Establish NIH cancer survivorship programs, including grants to address health disparities in childhood cancer survivorship.
Create grants to fund clinics for comprehensive long-term follow-up services for survivors of childhood cancer.
Provide funding for grants to improve access to care for survivors of childhood cancer.
Expand Centers
for Disease Control and Prevention cancer control programs, including programs aimed to
provide guidance to states and encourage them to improve systems of
care for survivors of childhood cancer.
The
Alliance has endorsed this legislation and would like to thank
Representative Speier and Representative Bono Mack for their commitment
to improving the quality of life of childhood cancer survivors.
