June 2018: A busy month of policy progress


Authorization to Appropriation: Next Steps for STAR Act

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Earlier this month, President Donald Trump signed the Childhood Cancer STAR Act into law, authorizing $30 million annually from 2019-2023 for programs and research to combat childhood cancer through the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). 

Passage of the bipartisan STAR Act - the most comprehensive childhood cancer legislation ever introduced - was the result of many years of hard work from our Congressional champions, our community at large, grassroots advocates from all over the country, and this organization. Its provisions are grounded in solid data, smart analysis, and a robust roundtable process that achieved community consensus on top policy priorities. 

Now, we work to get the STAR Act fully funded -- and all indications suggest this process is off to a good start! On Thursday, the Senate Appropriations Committee approved a fiscal year 2019 spending bill that includes funding for implementation of STAR, including survivorship research, biospecimen research, pediatric and adolescent surveillance, and additional funding for state cancer registries that track cancer in children, teens and young adults.

We thank Senate appropriations leaders for moving this bill quickly through Committee and invite you to join us in asking other Members of Congress to support full funding of the TAR Act: Take Action.

Appropriations Committee Calls for GAO Review of Barriers to Care for Childhood Cancer Survivors

The House Committee on Appropriations included a formal request that the General Accounting Office (GAO) study the "existing barriers to obtaining and paying for adequate medical care for survivors of childhood cancer" and submit recommendations to Congress based on their findings. 

The Children's Cause has been working to achieve this milestone for the past several months, after similar language was removed from the Childhood Cancer STAR Act. We express gratitude to the Appropriations Committee for recognizing that this is an important first step toward improving the long-term care of childhood cancer survivors, a cohort expected to reach 500,000 by 2020. 

Specifically, the GAO will be tasked with identifying barriers to coordinated survivorship care and making recommendations to "provide improved access and payment plans for childhood cancer survivorship programs and palliative care, including psychosocial services."

Hope Portal Resource Database Launches Nationally

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CCCA Communications Director Jess Kean (left) was recognized at the Coalition Against Childhood Cancer Summit in Seattle this month for her contributions as a member of the Hope Portal Launch Team.

Earlier this month, we shared a new way for families to find the resources offered by Children's Cause for Cancer Advocacy – and hundreds of other childhood cancer nonprofits! We join the Coalition Against Childhood Cancer in inviting you to visit the Hope Portal, a first-of-its-kind community directory of curated childhood cancer family support organizations.

At hope-portal.org, you can navigate a wealth of resources according to your family’s specific needs, diagnosis and geographic location. Whether you're looking for help paying the bills, a care package or wish granting, a nearby camp, or just someone to talk to, the Hope Portal brings vetted information to families in an easy-to-navigate format, and we’re thrilled to be part of its national launch.

June Advocacy Webinar Highlights Local, State Progress

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If you were unable to join us on Wednesday for our webinar on local and state-level advocacy around childhood cancer policy issues, the recording is now available on our website

We thank these terrific advocates for sharing their time and expertise with us: 
- Lynn Schaeber, author of Peyton's Law
- Christopher Winters, Founder of National Children's Cancer Consortium
- Joyce Reinecke, JD, Executive Director of Alliance for Fertility Preservation

In discussing advocacy tactics that have worked in communities around the country, several common themes emerged around the importance of: sharing patient stories; working within coalitions; tapping into local experts; and building relationships with a wide range of stakeholders. "You've just got to keep going until you find someone that listens," said parent advocate Lynn Schaeber.

Save the date for our next webinar on the topic of new pediatric oncology therapies, scheduled for September 26th. We will let you know when registration is open!

PFDD Workshop on Chemo-Induced Hearing Loss

Registration is now open for the September 13th Patient-Focused Drug Development workshop on chemotherapy-induced hearing loss in pediatrics. If you or someone you know is interested in childhood cancer hearing loss, we hope you'll join us this fall in Hyattsville, MD, just outside of DC.

The half-day meeting follows the FDA model for PFDD meetings and will feature a series of facilitated panel and audience discussions, focused on providing the FDA and other stakeholders with patient views on key issues related to burden of the condition, potential treatments, risk-benefit analysis and clinical trials.

Visit www.childhoodcancerpfdd.org to register today. We'll keep you posted as details are finalized, including hotel block information, speakers and the full agenda.

In other policy news...

  • Senate Rejects Rescissions Package: By a 48-50 vote, the Senate rejected the White House's plan to claw back $15 billion in previously-approved funds, including $7 billion for the Children's Health Insurance Program. (The Washington Post,6.20.18)
  • NIH Poised to Receive Funding Increase: House and Senate appropriations committees have approved FY2019 spending bills that would provide $38.3 billion in NIH funding increases of between $1.25 billion (House bill) to $2 billion (Senate bill) over FY2018's budget. (Science, 6.26.18)
  • Pre-Existing Condition Protections at Risk: The Children's Cause is proud to join with 45 cancer advocacy & professional organizations in a campaign to oppose efforts to get rid of pre-existing condition protections. We ask The Justice Department to stand up for millions of Americans with pre-existing conditions, including childhood cancer survivors:
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Thank you ... 

... to everyone who attended or supported our Jazz in June event last week! We had a terrific night with good friends enjoying great music, and we thank everyone who helped to make it a success. We give special thanks to everyone who donated or purchased a silent auction item and to the Eric Boyd Trio for sharing their talent with us.

Finally, please join us in thanking the evening's generous sponsors, including:

  • Presenting Sponsors: Genentech, Rusty and Lori Ring, and Novartis
  • Gold Sponsors: Amgen, Association for Accessible Medicine, Susan L. Weiner, Agios Pharmaceuticals, Jazz Pharmaceuticals

To see photos from the event, visit our blog or Facebook page.

Jessica Kean