August 2017: A Look Ahead to Awareness Month

September Preview: Childhood Cancer Awareness Month

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 still available but quantities are limited so order yours today! 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.

Other Awareness Month Events to Follow:

  • Congressional Summit & Alliance Art Exhibit on September 14th: Immediately following the 8th annual Congressional Childhood Cancer Summit is the Alliance for Childhood Cancer Art Exhibit and Luncheon on Capitol Hill. The Alliance is seeking art submissions from children with cancer, survivors or siblings to feature at this event. The submission deadline is September 8th!
  • Rally for Medical Research National Day of Action on September 14th: For those unable to make it to DC this September, Rally for Medical Research organizers have made it simple to participate in their day of action from anywhere. Learn more.
  • Atlantic Forum on September 15th: We'll be in attendance at this "Children and Cancer" forum at the Newseum the morning of Friday, Sept. 15th. Register here.
  • CureFest on September 16th & 17th: Be sure to stop by the Children's Cause exhibit table if you'll be attending this year's CureFest on the National Mall!

RACE for Children Act Becomes Law!

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President Trump signed the RACE Act into law on August 19th, as part of the larger FDA Reauthorization Act (FDARA) passed by both chambers of Congress this summer.

We thank the President and Members of Congress for their bipartisan support -- and we especially thank each of you who reached out to your Representatives and Senators throughout this process.

FDARA is a five-year reauthorization of user fee programs, which fund the agency's drug and medical device reviews. The current user fee program is set to expire September 30th.

The childhood cancer community celebrates this hard-fought achievement. RACE Act provisions hail from a blueprint report that grew out of a working group of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer in 2015-2016. For the past year, childhood cancer stakeholders - including the Children's Cause - have been involved in intensive bipartisan, bicameral negotiations with Congressional champions to make these recommendations a reality.

This legislation calls for patients to be part of the discussion with FDA about what drugs should be developed for kids. Children's Cause will continue to be at the table speaking up for our kids, and we continue to rely on your support to make us a stronger voice in Washington.

Children's Cause Calls on Congress to Pass Clean CHIP Renewal

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The current Children’s Health Insurance Program (CHIP) is set to expire onOctober 1st and - if not renewed - millions of vulnerable children would face a loss of critical health insurance coverage.

While most states could manage to keep CHIP running briefly past the October 1stexpiration of federal funding, advocates have noted there will be disruptions to the program before states exhaust that funding. Some 36 million children in this country are covered by Medicaid and/or CHIP.  Approximately one-third of children with cancer depend on these programs for their treatment.  

As advocates for children with cancer, we're asking Congress to pass a clean, five-year CHIP renewal without any extraneous, complicating attachments. Learn more and take action.

STAR Act: Seeking Senate Support from Key States

The Childhood Cancer STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress. This bipartisan legislation will advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors.

While 60% of Members in the House of Representatives currently support this legislation, just 20% of the Senate has signed on as a cosponsor. This month, as part of a coordinated Alliance for Childhood Cancer effort, we specifically targeted eleven Senators from the states highlighted on this map (AK, CO, IA, NE, NV, OH, PA, KS, SC, TN, WI).

We heard from these offices that constituent feedback is critical -- please share this link with anyone you know from one of these states.

Quick Links: Recommended End-of-Summer Reading

From our blog: 10 Years of Hope -- One Staffer's Reflection (8.28.17)

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A long, healthy life for every child diagnosed with cancer -- that's our mission here at the Children's Cause for Cancer Advocacy. And you are a vital part of everything we do!

September is Childhood Cancer Awareness Month, and there is no better time to support our work than now. Your monthly gift of $15 can help us to give voice to children with cancer, survivors and families.

Please start your monthly giving today.

Jessica Kean
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
May 2017: Updates from Washington

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.

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!

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.

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.

Jessica Kean