Chris Hansen, ACS CAN President

ACS CAN President Lisa Lacasse shares her views on the impact of advocacy on the cancer fight.

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Childhood Cancer Advocates Share Stories on Capitol Hill

June 18, 2013

Did you know that cancer is the leading cause of non-accidental death among children in the U.S. under the age of 15? ItŠ—'s a story of urgency that needs to be shared, and ACS CAN is participating in an exciting event today that is designed to spread that message. More than 150 childhood cancer patients, survivors and their families are on Capitol Hill today to ask Congress to support initiatives that can improve research, treatment and outcomes for children with cancer. The Alliance for Childhood Cancer, a coalition of 28 national patient advocacy groups and professional medical and scientific organizations, including ACS CAN, coordinated this effort to advance important legislation. Families from 31 states are bringing their deeply personal and powerful experiences and voices to the table for lawmakers to hear. Advocates will be meeting with Members of Congress and their staff to ask for support of several critical pieces of legislation. Just to name a few, they will ask for support for the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act, which would expand research of childhood cancers, improve efforts to identify and track childhood cancer incidences and identify opportunities to expand the development and research of therapeutics. Advocates will also ask for support of the Childhood Cancer SurvivorsŠ—' Quality of Life Act, which would provide resources for research and survivorship programs to improve the quality of life for all childhood cancer survivors, increase access to the long-term comprehensive health care services they need and enhance understanding of the long-term effects of their treatment. While innovative cancer research has led to more effective treatments and increased survival for some types of childhood cancer, two-thirds of children still endure life-altering and life-threatening symptoms, side effects and late effects resulting from toxicities of treatment that can last throughout their lifetimes. Additional scientific discoveries are essential for meaningful progress against the most challenging childhood cancers, and to deliver new and better treatments that minimize suffering and improve quality of life for the more than 380,000 survivors of childhood cancer living in the U.S. today. ACS CAN is working to pass legislation that addresses quality of life and survivorship for all people facing cancer, including pediatric patients, survivors and their families, through improved access to palliative care services. Two bills introduced in Congress this spring would address the deficit in palliative care training offered in the nationŠ—'s medical schools and expand palliative care research, access and public awareness so more adults and children living with a serious illness can benefit from this extra layer of support that is essential to providing quality cancer care. Nearly 16,000 children and young adults under the age of 20 will face a cancer diagnosis this year. Through events like todayŠ—'s lobby day, ACS CAN is committed to working with partners in the childhood cancer community to further our shared goals to improve the lives of children and their families facing cancer and its aftermath.