Washington, D.C. – Advocates and volunteers from the Patient Quality of Life Coalition (PQLC) will be on Capitol Hill today to share their stories with lawmakers as part of the coalition’s sixth annual lobby day.
Bossier City Father Whose 10-Year-Old Daughter Died of Cancer Spoke at Louisiana Capitol Today about Need for Palliative Care
More Than 60 Cancer Survivors and Others Traveled to Baton Rouge to Ask Lawmakers to Support the Implementation of a Palliative Care Advisory Council and Other Measures to Reduce Cancer
Trey Gibson who lost his 10-year-old daughter, Emilie, to cancer spoke at the State Capitol today on the need for palliative care throughout Louisiana. The event was part of the American Cancer Society Cancer Action Network’s (ACS CAN) annual Day at the Capitol where more than 60 patients, survivors, and their families and caregivers traveled to Baton Rouge to meet with their legislators and ask them to support measures to reduce cancer.
“In the summer 2016, our daughter began to have headaches while swimming and we eventually made our way to a neurologist who ordered an MRI. Within an hour, we got the results no parent should ever get. Emilie had a rare pediatric brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG),” said Gibson of Bossier City. “We quickly learned the importance of palliative care not only for Emilie but for our whole family.”
Brain tumors are the most common cause of cancer-related death in children, and DIPG is the leading cause of death from pediatric brain tumors. A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago. There is no effective treatment and no chance of survival. Only 10% of children with DIPG survive for two years following their diagnosis, and less than 1% survive for five years. The median survival time is nine months from diagnosis.
“Part of the family’s responsibilities to the child who is ill is to become their child’s advocate,” said Gibson, co-founder of The Fight Like Emilie Foundation. “We fought and advocated for Emilie throughout her fight. Not only do we want to make sure that families are provided the most expert-based and research-backed information out there, but we also want to ensure they and their child have access to palliative care.”
Palliative care honors patient choice about treatment goals and helps bring the family into the care process. It focuses on providing patients with relief from the symptoms, pain and stress of a serious illness and to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, social workers, counselors, and other specialists who work with the patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, like cancer, and can be provided alongside curative treatment.
“Palliative care throughout the course of an illness achieves the triple aim of better patient experience, better quality of care and lowered health care costs,” said Lance Barbour, Louisiana government relations director for ACS CAN. “Today, we call on state lawmakers to support the implementation of a Palliative Care Advisory Council within the Louisiana Department of Health to provide consumer and provider education on services available throughout the state.”
In addition to asking lawmakers to support palliative care efforts, volunteers also asked their legislators to strengthen Louisiana’s Clean Indoor Air Act to protect all Louisiana workers from secondhand smoke and to support a strong law that raises the age of the sale of all tobacco products including e-cigarettes to 21 years old, while also improving enforcement and fines on noncompliant retailers. Volunteers also thanked their lawmakers for their continued support in funding the Louisiana Breast and Cervical Program and Louisiana Tumor Registry and asked for their support for funding the Louisiana Colorectal Roundtable’s Patient Navigator Program.
About ACS CAN
ACS CAN is making cancer a top priority for public officials and candidates at the federal, state and local levels. ACS CAN empowers advocates across the country to make their voices heard and influence evidence-based public policy change as well as legislative and regulatory solutions that will reduce the cancer burden. As the American Cancer Society’s nonprofit, nonpartisan advocacy affiliate, ACS CAN is critical to the fight for a world without cancer. For more information, visit www.fightcancer.org.
About The Fight Like Emilie Foundation
The Fight Like Emilie Foundation exists to support research, institutions/organizations, families, and initiatives, as well as to raise awareness in the fight to defeat childhood cancer. Emilie was a fighter from the day she was born. Over the course of 14 months she battled cancer with courage, sass, humor, song and an occasional dance under a crazy hat. On October 31st, 2017 she passed the baton to her family and friends so that we could continue her fight until the day cures are found for all children. We are here to help. To learn more, go to https://fightlikeemilie.org/