Mariah Forster Olson, an ACS CAN Ambassador Constituent Team Lead (ACT Lead), traveled to Washington, D.C. this week to share her story as a childhood cancer survivor and to advocate on behalf of other patients and survivors during the 2019 Childhood Cancer Action Days.
Presidential Proclamation: Childhood Cancer Awareness Month
An estimated 16,000 children under the age of 20 in the U.S. are diagnosed with cancer every year. A cancer diagnosis for anyone is shattering news, but the thought of a child getting cancer is especially heartbreaking. That's why we're grateful that President Obama signed a presidential proclamation naming September National Childhood Cancer Awareness Month, focusing national efforts to combat this devastating disease.
In his proclamation, President Obama notes how critical research investment and clinical trials are to developing new treatments and therapies and reducing the number of childhood cancer-related deaths. Congress has a large role to play here. Earlier this summer, ACS CAN volunteers participated in a Capitol Hill lobby day with more than 250 childhood cancer patients, survivors and families who have lost children to urge Congress to support increased funding for childhood cancer research and passage of the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act. The Caroline Pryce Walker Act would help to expand research of childhood cancers by:
- Supporting the growth of biorepositories - banking of specimens for future research - for childhood cancers
- Authorizing grants for state cancer registries to expand tracking of childhood and adolescent cancers, and
- Initiating a study on pediatric drug development.
We gained some new support for these legislative actions during the lobby day, but we continue to seek commitment from members of Congress to invest in the urgent medical innovation childhood cancer patients and their families desperately need.
ACS CAN is also working to pass legislation that improves the quality of life for all people with cancer -- at any age and any stage -- as well as their families, through improved access to palliative care services. Palliative care can be especially important to childhood cancer patients as two-thirds of children endure life-altering and life-threatening symptoms, side effects and late effects resulting from toxicities of treatment that can last their lifetimes. For most children and their families, treating the pain, stress and other symptoms of cancer is as important as treating the disease. Consequently, pairing pediatric palliative care with delivery of anti-cancer therapies has emerged as the new model for optimal comprehensive care that focuses on the quality of life for the child and family as an essential aspect of managing the disease.
Two bills introduced in Congress this spring would address the deficit in palliative care training offered in the nation's medical schools and expand palliative care research, access and public awareness so more children living with a serious illness can benefit from this extra layer of support that is essential to providing quality care. As the president so eloquently put it in his proclamation, "During National Childhood Cancer Awareness Month, our Nation comes together to remember all those whose lives were cut short by pediatric cancer, to recognize the loved ones who know too well the pain it causes, and to support every child and every family battling cancer each day."
Through advocating for research investment and increased access to palliative care services, ACS CAN remains dedicated to helping reduce the cancer burden on our nation's youngest and most vulnerable.