FOR IMMEDIATE RELEASE
EAGLE POINT, OREGON – Monday, November 23, 2015
The Ethan Jostad Foundation for Childhood Cancer, a 501c3 non-profit charity dedicated to providing support to children and families affected by childhood cancer, announced its endorsement and support for H.R.3381 - The Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR) of 2015.
The bipartisan bill, introduced by Congressman Michael McCaul (R-TX), is co-sponsored by Congressman Chris Van Hollen (D-MD) and Congresswoman Jackie Speier (D-CA), as well as Senate sponsors Senator Jack Reed (D-RI) and Senator Shelley Moore Capito (R-WV). The goal and purpose of the bill is wide in range and and requires the following actions:
Expanding Opportunities for Childhood Cancer Research: Due to the relatively small population of children with cancer and the geographic distance between these children, researching childhood cancer can be challenging. As such, the Childhood Cancer STAR Act would authorize the National Cancer Institute (NCI) to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain relevant clinical, biological, and demographic information on all children, adolescents, and young adults with cancer. (1)
Improving Childhood Cancer Surveillance: Building upon previous efforts, this bill would authorize grants to state cancer registries to identify and track incidences of child, adolescent, and young adult cancer. This funding would be used to identify and train reporters of childhood cancer cases, secure infrastructure to ensure early reporting and capture of child cancer incidences, and support the collection of cases into a national childhood cancer registry. (1)
Improving Quality of Life for Childhood Cancer Survivors: Unfortunately, even after beating cancer, as many as two-thirds of survivors suffer from late effects of their disease or treatment, including secondary cancers and organ damage. This legislation would enhance research on the late effects of childhood cancers, including a study on insurance coverage and payment of care for childhood cancer survivors; improve collaboration among providers so that doctors are better able to care for this population as they age; and establish a new pilot program to begin to explore innovative models of care for childhood cancer survivors. (1)
Ensuring Patients Access to Publicly Available Compassionate Use Policies: Compassionate use– the process by which a patient with a serious or life-threatening illness can be granted access to therapies still in development and outside of the clinical trial setting, when there is no comparable alternative – is often challenging for patients and their doctors to navigate. This legislation would ensure that pharmaceutical companies have publicly accessible compassionate use policies and would require FDA to finalize its guidance and address regulatory uncertainties for industry on the issue. (1)
Ensuring Pediatric Expertise at the National Institutes of Health (NIH): The Childhood Cancer STAR Act would require the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer. (1)
"Childhood cancer is the number one disease killer of our children in the United States, and kills more kids than many other diseases combined. Sadly pediatric cancers receive little in the way of funding for research and the disease doesn’t receive the attention it needs and deserves. We hope this bill will change that with an approach that is wide reaching,” said Kimberly Jostad, co-founder and President of the Ethan Jostad Foundation.
"In today's political climate, which is often divisive and partisan, this is a rare opportunity for our leaders in Congress to come together and support something we all cherish – the health and wellbeing of our children. The STAR Act tackles many of the issues that kids with cancer and their families have been facing for years," said Joe Goedereis, Director of Public Relations for EJF. He continued, “It helps collect critical medical and clinical information on all pediatric cancer patients, with a goal of finding commonality in the data that can be used for advancements in research and better treatments. It trains medical staff and physicians to identify and report childhood cancer cases, which will help with early detection.” He added, "The bill addresses what two thirds of all childhood cancer patients face – the late term side effects from the very treatments they receive to fight the disease. It includes provisions to care for kids after they complete treatment and enter into young adulthood. It opens the doors that have been shut to pediatric patients by providing access to the compassionate use of drugs and therapies that are still in development. Finally, and most importantly, the STAR Act ensures pediatric cancer patients will be permanently represented at the NCI by mandating the inclusion of at least one Pediatric Oncologist on the National Cancer Advisory Board. This is crucial because up until this year there was no current representation on the NCAB for pediatric patients until President Obama appointed Dr. Peter Adamson in June of 2015. This ensures that representation will remain permanent on the NCAB so that kids with cancer have a voice."
The foundation encourages supporters of their foundation and members of the public to read the bill, which can be found here (and linked below  ), and to contact their Congressional representatives in the House and Senate to endorse, support, co-sign, and vote yes to pass the STAR Act of 2015.
ABOUT THE ETHAN JOSTAD FOUNDATION FOR CHILDHOOD CANCER
The Ethan Jostad Foundation was established by Kim and Chris Jostad in October of 2011 in the memory of their son Ethan, who passed away at the young age of 9 from Stage IV Alveolar Rhabdomyosarcoma, an aggressive form of soft tissue sarcoma cancer. During his two year battle with cancer, Ethan's story became an inspiration to hundred of thousands of people and opened the eyes of many to the plight of children and families who are impacted by pediatric cancer.
The mission of the Ethan Jostad Foundation for Childhood Cancer is to continue Ethan's legacy by providing love, hope, and support to the children and families who continue to fight every day. In addition to funding cutting edge pediatric cancer research, the foundation brings smiles to the faces of children fighting cancer by providing toy packages to local children who are in active treatment, and by providing much needed financial assistance to those families in Oregon. The Ethan Jostad Foundation was voted a Top Charity in 2012 by Chase Community Giving and actively supports and partners with other childhood cancer charities and organizations with the singular goal of finding cures. For more information please visit ethanjostadfoundation.org.
- Source: The Alliance for Childhood Cancer and the Coalition Against Childhood Cancer. (http://stepupforchildhoodcancer.com/staract.html)
- Source: Public Congressional Record (https://www.congress.gov/bill/114th-congress/house-bill/3381/text)