February 2018: NEW program announcements & policy updates

Save the Date: Patient Focused Drug Development Meeting on 9/13/18

One of the more devastating late effects of childhood cancer treatment is a loss of hearing, which represents a serious unmet need in the pediatric cancer community. The Children's Cause, in partnership with other childhood cancer organizations including Mattie Miracle Cancer Foundation, the Children's Brain Tumor Foundation and Momcology, will host an FDA-approved Patient Focused Drug Development (PFDD) meeting on September 13, 2018 in Washington, DC.

The meeting will feature panel presentations by survivors, parents, and medical specialists, with an opportunity for public comment and input. This will be an opportunity for those affected by this condition to give the FDA the benefit of their experience as they consider treatments in development. If you're interested in attending or participating in this meeting, please fill out the form through this link so we can keep you posted on details and registration.

Children's Cause Launches College Scholars Program

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CCCA is pleased to offer an opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. Award recipients will receive a scholarship of $2,000 via our College Scholars Program beginning in fall 2018.

Applicants must be pediatric cancer survivors pursuing a Bachelor's degree or higher willing to commit to a childhood cancer advocacy project of their choosing. Project examples include a summer internship in our DC office or presentation at a health fair or Children's Cause event. 

The application deadline is April 15, 2018. Scholarship recipients will be notified by May 15. Please find full details and access to the application here.

Policy Updates from Capitol Hill

Childhood Cancer STAR Act advances to Senate Committee
The Childhood Cancer STAR Act is on the schedule for tomorrow's Senate HELP Committee mark-up (February 28). If the HELP Committee approves the STAR Act, Chairman Lamar Alexander has pledged to move the bill quickly to the Senate for approval and send it to the House for consideration (H.R.820), where we currently have 357 cosponsors - over 80% of the full House! - signed on in support.

To be in the strongest position possible, we need more Senate support. Check here to see if your Senator is signed on and then take action! 

Be sure you're following Children's Cause on Facebook, Twitter and Instagram for the latest on the STAR Act.


Take Action to Secure NIH Funding
Through a budget agreement announced in February 2018, Congress has signaled its strong bipartisan support for the National Institutes of Health by promising an additional $2 billion for NIH over the next two years. As Congress negotiates the final details and heads towards an appropriations vote, we ask you to remind your Members of Congress of their demonstrated commitment to cancer research.

Help us get this promised funding over the finish line by writing to your Senators and Representative with our action alert.


Congress Renews CHIP for 10 Years
On February 8th, Congressional leaders announced that CHIP's six-year extension would become a full ten-year extension, as part of a broader budget agreement. This spending agreement funds CHIP through 2027, providing families with peace of mind for the foreseeable future. (Read more: Vox, 2.9.18)


Congress Passes RAISE Family Caregivers Act: In late January, President Trump signed into law the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act. This bipartisan law aims to create a national strategy for supporting the 40 million family caregivers in the U.S. An advisory body will bring together stakeholders to make recommendations within a year for meeting the needs of caregivers. (Read more: Forbes, 1.24.18)

Registration Now Open for Childhood Cancer Action Days: April 23-24

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You're invited to join the Children's Cause and the Alliance for Childhood Cancer for this year's Childhood Cancer Action Days in Washington, DC on April 23-24.

The annual two-day event brings parents, children, healthcare professionals and others together for new advocate training, issues training, and pre-arranged Capitol Hill visits with Congressional Representatives and their staff.

We encourage families, patients and advocates to participate and join Children's Cause in this community event. Find out the schedule of events, hotel information, registration details and reports from previous Action Days on our website.

CCCA's Founder Presents on Public Private Partnership at International Meeting

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Our president and founder Susan L. Weiner, PhD, presented this month at the ACCELERATE pediatric oncology conference in Brussels. Dr. Weiner discussed the critical need for a public private partnership (PPP) to develop drugs for children when there is no associated adult development program.

Dr. Weiner's presentation continues a Children's Cause effort to identify novel business and collaborative arrangements to address this development gap. The PPP has captured the imagination of several private institutions, including the Biden Cancer Initiative. We look forward to keeping the childhood cancer community updated as this work continues to progress. 

Quick Links | Recommended Reading

  • CCCA Webinar Highlights Online Resources for Families: Our 2018 Webinar Series kicked off with an hour-long tour through the maze of support services and resources available to families of kids with cancer and survivors. "Navigating the Childhood Cancer Journey" delved into some of the best tools available to aid in a child's journey from diagnosis to survivorship, including social workers, the Patient Advocate Foundation, and the Hope Portal. More highlights and the full recording are available here.

 

  • FDA Public Workshop -- CDER and You: The Food and Drug Administration Center for Drug Evaluation and Research (CDER) is conducting its third annual public workshop for patient advocacy groups on April 3rd. The workshop will include educational presentations about the drug approval process and safety issues. Interested patient advocates can register by March 20th for the in-person meeting in Silver Spring, MD, or to attend via webcast. Learn more.

 

  • Medicaid Transportation Program Facing State-level Cuts: Families who rely on the Medicaid program known as NEMT - non-emergency medical transportation - to get to and from medical appointments are concerned by an increasing number of states receiving federal waivers to allow them to cut the service. So far, Iowa, Indiana and Kentucky have received the waiver and Massachusetts has a waiver pending. (Read more: NPR, 1.27.18)

 

  • Friends of Cancer Research Meeting on Molecularly Targeted Therapies:CCCA's founder Susan L. Weiner, PhD, was part of a panel discussion on "Considerations for the Application of a Molecular Target List to Cancer Drug Development for Pediatrics" at this half-day meeting on February 20th. Meeting slides are available here.

Join us in Washington on June 18th for a reception featuring jazz music from the Eric Byrd Trio! Our Jazz in June event will bring together new and seasoned childhood cancer advocates from 6:30-9:00pm at the Hamilton Loft, near Metro Center. Tickets are now available, including free tickets for childhood cancer survivors!

Jessica Kean