July 2017: All Eyes on the Senate

RACE for Children Act Awaits a Senate Vote

The RACE for Children Act passed the House by a voice vote earlier this month as part of the larger FDA user fee bill. We're now asking advocates to join us in urging Senators to support this bipartisan, life-saving legislation on the Senate floor -- without delay and without altering RACE Act provisions.

The RACE Act would improve opportunities for more studies in childhood cancer by:

  • Requiring that companies developing cancer drugs do Pediatric Research Equity Act (PREA) studies of their drugs in children when the molecular target of their drug is relevant to a children's cancer; and
  • Ending the exemption of PREA obligations for cancer drugs with orphan designations if the molecular target of their drug is relevant to a children's cancer. 

We hope Senators see the FDA Reauthorization Act - with the RACE Act included - as a golden opportunity to achieve a significant public health accomplishment before heading home for August recess.

Please write, call and tweet at your Senators expressing the urgency of passing RACE quickly and cleanly: Write your Senators here.

Healthcare Saga Continues in the Senate

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With healthcare dominating the policy landscape in Washington for the past several months, the Children's Cause has been working with allied coalitions and grassroots advocates around the country to express the needs and priorities of children with complex medical conditions like pediatric cancer.

Senate Status: On Tuesday afternoon, the Senate voted favorably on a motion-to-proceed, opening up 20 hours of debate on healthcare and paving the way for a series of votes on different pieces of legislation. The first bill, a version of repeal-and-replace, was defeated on Tuesdaynight. A second repeal-only bill failed on Wednesday afternoon.

Following the allotted 20 hours of debate will be something known as "vote-a-rama" where dozens of amendments are expected to be introduced and voted on. Finally, we expect to see a stripped-down "skinny repeal" bill designed to appease enough Senate Republicans to pass the chamber and trigger compromise negotiations with House Republicans. A vote on that bill could go either way, depending on its specifics.

House-Passed Bill: The American Health Care Act, as passed by the House of Representatives in May, would roll back the pre-existing condition protections that families have come to rely on since the enactment of the Affordable Care Act. This bill would bring the return of costly, limited high-risk pools and lifetime caps on coverage. The legislation also includes significant cuts to Medicaid, which insures approximately one-third of children with cancer in this country.

Follow Children's Cause on Facebook and Twitter for live developments and analysis as this process continues to unfold.

Enrollment Opens for NCI-COG Pediatric MATCH Trial

Pediatric MATCH: NCI-COG Pediatric Molecular Analysis for Therapy Choice

Earlier this week, the National Cancer Institute (NCI) and the Children’s Oncology Group (COG) opened enrollment for a precision medicine clinical trial known as Pediatric MATCH. This phase 2 clinical trial is for children and adolescents ages 1-21 who have solid tumors that no longer respond to standard treatment or have relapsed. Eligible solid tumors include non-Hodgkin lympomas, brain tumors and histiocytoses.

Enrollment in Pediatric MATCH will be available at children’s hospitals, universities and cancer centers across the United States that are part of COG. More than 90 percent of children and teens with cancer in the United States are treated at a COG-affiliated institution. Pediatric MATCH expects to screen 200-300 pediatric patients each year.

NCI and COG have been educating pediatric oncologists across the country so they may support families who wish to pursue the two-step screening and enrollment process. If you know a child who may be eligible for Pediatric MATCH, their caregiver should discuss it with the child's oncology team to learn more about eligibility.

Learn more:  NCI Press Release

Key Findings from CCCA's Survey of Patient Needs

In partnership with the Patient Advocate Foundation, we conducted a survey this spring with the goal of better understanding the financial hardships and insurance challenges facing childhood cancer families.

We're learning a lot from the results, and we want to share some of the things that really stand out to us: 

  • 6 in 10 parents reported experiencing a financial hardship over the past 12 months due to the cost of their child's medical care. Over one-third categorize their hardship as "extremely severe, unable to manage."
  • 87% of parents surveyed reported difficulty maintaining a regular work schedule over the past year due to the demands of their child's treatment and care. 
  • 28% of parents we surveyed currently owe at least $10,000 toward healthcare costs related to their child's cancer treatment. Six (6) percent of parents have at least $50,000 in outstanding medical debt.

Read more key survey findings on our blog.

Now Accepting Nominations for 2017 Rosen Award

The Children's Cause is now accepting nominations for this year's Leonard M. Rosen Memorial Research Award, a $10,000 grant annually awarded by the Children's Cause to an individual working to advance treatment and care for children with cancer and their families.

If you know someone active in childhood cancer policy who might be a good fit for this year's award, please consider nominating them or passing the form along.

Applications are due on August 17th. Apply here.

You're Invited: Join us in DC for a Social Event!

Advocates, young professionals, and young adult survivors are invited to join us in Washington, DC on Tuesday, September 12th for a social event at TAKODA Restaurant, from 6-8pm.

Tickets are now available -- and quantities are limited! There is a discount rate for young professionals age 35 and younger, and we are offering complimentary tickets to young adult survivors of childhood cancer. Buy your tickets here, or reply to this email to inquire about a complimentary survivor ticket.

If your organization or company may be interested in sponsoring this event, please see our Sponsorship Benefits (PDF).

Learn more on our event page.

Jessica Kean