Welcome to the Advocacy Brief, a quarterly offering from the American Society of Pediatric Hematology/Oncology. The goal of this e-newsletter is to inform members about legislative and regulatory issues impacting the profession of pediatric hematology/oncology and the patients we serve.
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As many of you may have read, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act was passed by Congress on May 22, 2018, and will now go to the President to be signed into law. It was an honor and a privilege to represent ASPHO’s national Advocacy Committee and attend the Alliance for Childhood Cancer Action Days on April 24, 2018. I proudly took a stand alongside healthcare providers and family members of children who are currently facing or lost their battle with cancer to discuss 'our' stories and the dire importance of the STAR Act. During our visit we met with the offices of Texas Senator Ted Cruz, Senator John Cornyn, Representative Ted Poe, Representative Pete Olson, and Representative Jeb Hensarling to thank them for their continued support and expression of necessity of the STAR Act. As I met with over 200 advocates I saw a remarkable testament of passion within these families and healthcare providers. We united under one centralized focus and were determined to have our voices heard. You could not image the excitement I felt in the early morning with an email stating the STAR Act has passed through the House of Representatives! It proves that our advocacy efforts are paying dividends and this alone brings hope and light to so many who will continue with these efforts.
Danielle K. Johnston, MSN RN FNP-C
Legislative/Regulatory News
ASPHO Joins Alliance for Childhood Cancer's Annual Action Days on Capitol Hill
The Alliance for Childhood Cancer, of which ASPHO is a coalition member, held their annual day on the Hill on April 24, 2018. This event brings together the many voices active in childhood cancer advocacy to spend time meeting with elected officials to discuss childhood cancer issues. ASPHO members Eric Sandler, MD, and Danielle K. Johnston, MSN RN FNP-C, both attended on behalf of ASPHO. Both received issues and advocacy training, including training on the Childhood Cancer STAR Act, before conducting pre-arranged Hill visits. This effort was instrumental in helping the Childhood Cancer STAR Act be signed into law.
Childhood Cancer STAR Act Signed Into Law
After years of advocacy by many groups in the childhood cancer realm, the Childhood Cancer STAR Act was signed into law on June 5, 2018. This bill was designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, and providing enhanced resources for survivors and those impacted by childhood cancers. Thank you to all ASPHO members who took time out of their busy schedules to contact their elected officials in support of this legislation. However, this work is not over. The STAR Act now needs funding to support the initiatives in the bill. ASPHO will be working with its coalition partners to support funding for this historic piece of legislation.
ASPHO Signs on to Alliance for Childhood Cancer Appropriations Letter
ASPHO signed on to a letter from the Alliance for Childhood Cancer asking the Senate Appropriations Committee Subcommittee on Labor, Health & Human Services and Education to provide $30 million in funding for the Childhood Cancer STAR Act. If funded, the STAR Act would authorize programs like biorepositories to be funded through the National Institutes of Health and Centers for Disease Control surveillance on childhood cancers. Additionally, this bill would provide research funding for childhood cancer survivorship.
ASPHO Signs on to American Academy of Pediatrics Letter
ASPHO joined the American Academy of Pediatrics and 16 other pediatric organizations to sign on to a letter requesting a meeting with Health and Human Services Secretary Alex Azar to discuss research gaps in gun violence and gun safety initiatives in public health research.
World Sickle Cell Day
ASPHO joined its partner the Sickle Cell Disease Coalition (SCDC) in celebrating World Sickle Cell Day on June 19, 2018. The SCDC focused their awareness efforts on sickle cell disease in Africa. ASPHO utilized its social media accounts to help bring awareness to World Sickle Cell Day. View the Coalition’s educational content on the current state of sickle cell around the world.
Sickle Cell Awareness Month
September is Sickle Cell Awareness Month. ASPHO will be raising awareness on sickle cell issues utilizing social media and other methods of communication to educate members on the current state of sickle cell disease. Please watch for more information and follow ASPHO on Twitter and Facebook.
For more information on our coalition partners and activities here are some helpful links:
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