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.

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Healthcare Saga Continues in the Senate

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.

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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

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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.

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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.

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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.

The Latest in Washington: Healthcare & Budget News

There's a lot of policy activity happening in Washington with the potential to have a big impact on children with cancer. We're monitoring these issues closely - notably, the American Health Care Act and the president's budget proposal - and working with allied coalitions to express the needs and priorities of children with complex medical conditions like pediatric cancer.

The American Health Care Act, as passed by the House of Representatives earlier this month, 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. Read more on our blog.

We are sharing testimonials on social media from families who are anxious about what AHCA could mean for their child battling cancer, with the hashtags #LetMeGrowUp and #ProtectOurCare. Find out how to take part in several ongoing social media campaigns here.

In other news, President Trump recently submitted his budget proposal to Congress, which calls for big cuts to medical research and health insurance for low-income children. Of particular concern are the threats to Medicaid and the Children's Health Insurance Program (CHIP). Together, Medicaid and CHIP cover nearly half of children age 6-and-under, including thousands of children with cancer.

The president's budget also calls for $6 billion in cuts to the NIH, including $1 billion from the National Cancer Institute. It is critical to note that Congress, not the president, controls the federal budget -- and medical research continues to receive bipartisan support in Congress. In fact, Congress just added $2 billion to the NIH budget for the remainder of this fiscal year (ending September 30). Read more on our blog.

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200 Attend Childhood Cancer Action Days

Approximately 200 childhood cancer advocates took to Capitol Hill for this year's Alliance for Childhood Cancer Action Days at the beginning of May. Attendees spent a full day receiving issues and advocacy training, followed by a busy day of meetings with Members of Congress and their staffs. Advocates focused on three key issues this year: the STAR Act, NIH funding, and the RACE Act. 

We were proud to be part of this annual event and thank all the attendees for their dedicated advocacy efforts, including those who joined in virtually by writing, tweeting or calling their Members of Congress.

- News coverage: 8-Year-Old Cancer Survivor Fighting for More Childhood Cancer Research

Next week, we'll be taking part in the One Voice Against Cancer lobby day -- follow along on Facebook, Twitter or Instagram!

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Financial Impact of a Childhood Cancer Diagnosis

On our latest advocacy webinar, we delved into the topic of treatment-related financial hardships facing families with a childhood cancer diagnosis. Among the key points we learned from research experts Kira Bona (MD, MPH), Anne Kirchhoff (PhD, MPH) and Elyse Park (PhD):

- 1 in 5 children diagnosed with cancer were already living in poverty. Among the families who were not poor at the time of diagnosis, 10-15% became poor during treatment for their child's cancer.

- Childhood cancer survivors are more likely to be covered by Medicaid than their siblings, more likely to have a history of being denied health insurance because of their cancer treatment, and they spend a greater percent of their income on medical expenses. Over half of adult survivors in one study reported skipping recommended medical care in the past year.

- Young adult survivors - especially uninsured survivors - lack needed familiarity with the Affordable Care Act and other available insurance protections.

A more detailed summary and the webinar recording are available here.

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Research News Round-Up

Precision Medicine Breakthrough: Keytruda Approved by FDA

In a groundbreaking research development this month, the Food and Drug Administration approved Keytruda, the first ever cancer therapy based on a patients' specific genetic traits, rather than cancer type. This approval includes children with the identified genetic trait whose cancer has progressed and who have no alternative treatment options. This is a huge leap forward for the field of precision medicine, which uses a patient's genetic makeup to deliver immuno-targeted therapy.

Find additional recent research developments on our blog.

Still Time to Register for Friday Webinar!

We've got two immediate opportunities for you to engage around the issue of financial toxicity as a side effect of a cancer diagnosis. If you're interested in learning more about the financial barriers that impact access to care and quality of life for families impacted by childhood cancer, here's how you can help us tackle this issue right now

Join us TOMORROW - April 28th - as we start to explore what we as policy advocates can do to work toward effective solutions to lessen the financial burden of cancer care on families in our community.

Academic researchers Anne Kirchoff, PhD, MPH, and Kira Bona, MD, MPH, will lead a discussion about challenges and opportunities facing childhood cancer advocates in our efforts to decrease financial barriers and expand access to affordable cancer care for families with a child battling cancer. CLICK TO REGISTER.

Also: Survey of Caregivers, Patients and Survivors

The Children's Cause, in collaboration with the Patient Advocate Foundation, is conducting a survey of childhood cancer families, patients and survivors. Your participation is completely voluntary and your individual responses will be kept confidential.

As an incentive for participating, you'll be entered into a weekly $100 Amazon gift card drawing! CLICK TO LAUNCH THE SURVEY.

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Childhood Cancer Action Days: Participate Virtually

Join us from home on Monday, May 1st and Tuesday, May 2nd

We are just days away from the 2017 Childhood Cancer Action Days and we are anticipating another terrific year of storming Capitol Hill with the Alliance for Childhood Cancer.

If you are not able to join us in Washington, rest assured that you can still play an important role from home by amplifying the message of our advocates on the ground (follow hashtag #CCAD2017).

Watch your email on Monday morning for messages to share on social media and with your legislators about these key issues: the STAR Act,NIH funding, and the RACE Act.

Follow us on Facebook and Twitter all day Monday and Tuesdayfor updates and easy-to-share messages.

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The Latest on Capitol Hill: Amended GOP Healthcare Bill & Efforts to Avoid a Shutdown

Revised American Health Care Act

We are closely following updates on the new healthcare proposal announced on Tuesday, and we hope to have more information and action steps for you next week. Our top concern is the impact the legislation would have on people with pre-existing conditions, including childhood cancer survivors. The amended bill would allow states to opt out of protections for people with pre-existing conditions, essentially reviving expensive high-risk pools.

- Three Things You Should Know About the GOP's Latest Healthcare Plan (Time Money, 4/26/17)

- House Freedom Caucus Leaders Back New Healthcare Plan (Washington Post, 4/25/17)

- Here's where we stood on the original American Health Care Act, which failed to progress in March: What Would It Mean for Children with Cancer?

Congress Seeks to Avoid Government Shutdown

Congress has been facing a deadline of midnight Friday to pass a new spending bill to fund the federal government through September butreports from late Wednesday indicate that Congress may opt to extend that deadline for one week, buying them some extra time to avoid a government shutdown.

A major stumbling block has been funding subsidies for low-income people enrolled in the insurance marketplace through the Affordable Care Act. It appears that the Administration has dropped its opposition to those subsidies (known as Cost Sharing Reductions), which greatly improves the odds of avoiding a shutdown.

We will keep you posted as negotiations continue.