April 2017: Three Big Things

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.

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.

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.

Jessica Kean
March 2017: HIGH ALERT for Cancer Research Funding

HIGH ALERT: Cancer Research Funding at Risk

White House Asks Congress to Slash NIH Funding for Remainder of FY2017 and Beyond

FY2017: A new White House proposal calls for $1.2 billion in cuts from the current fiscal year budget of the National Institutes of Health (NIH). Mid-year cuts on this scale would have a devastating and immediate effect on research grants across the nation with the potential to impact all disease areas, including childhood cancer. 

Current government spending will expire at the end of April, when Congress must pass a new spending bill for the reminder of the fiscal year (ending September 30, 2017). We're asking all advocates to contact their Members of Congress immediately and ask them to stand with us in defense of childhood cancer research at this critical moment.

FY2018: This alarming news follows the White House release of a budget blueprint (PDF) earlier this month that proposes steep cuts to research agencies, eliminating $6 billion (20 percent) of the NIH budget. The National Cancer Institute's share of those cuts - an estimated $1 billion - would severely impact already-underfunded childhood cancer research.

It's important to emphasize that Congress - not the Executive Branch - controls the federal budget. But the President's blueprint traditionally presents the starting point for budget deliberations on Capitol Hill.

Cancer research has always had bipartisan support, and we are optimistic that we will be able to soften the blow of these cuts through the appropriations process -- but we will need all-hands-on-deck! Progress in childhood cancer research is almost entirely dependent on federal funding. Please speak up with us to advance new treatments and find cures. Take action here.

Register for Childhood Cancer Action Days: May 1-2

You're invited to join the Alliance for Childhood Cancer in Washington on May 1st and 2nd for this year's Childhood Cancer Action Days. A strong showing of advocates at Action Days 2017 is more crucial than ever. We will be at a critical point in the legislative process on several key issues for children with cancer. Sharing your story in Washington this spring will ensure the voice of children with cancer is heard loud and clear!

The 6th Annual Action Days event will consist of a full day of issues and advocacy training, followed by a day of pre-arranged meetings with Members of Congress and their staff on Capitol Hill. Learn more.

The deadline to apply for a scholarship to off-set your travel expenses and/or the $50 family registration fee is today, March 31st. The deadline to secure a room at the Renaissance Hotel in the Alliance room block is April 2nd. 

Register now.

CCCA's Founder to Receive ASCO Award

Partners in Progress Recipient: Susan L. Weiner, PhD

We offer congratulations to our founder Susan L. Weiner, PhD, for her recognition by the American Society of Clinical Oncology (ASCO) as the recipient of this year's Partners in Progress Award.

The Partners in Progress Award recognizes a person involved in patient advocacy activities that impact public awareness about cancer and supports legislative efforts around research, treatment, prevention or care. Dr. Weiner will be presented with the award at the June 2-6ASCO Annual Meeting in Chicago.

Learn more about Susan here, and see the full list of ASCO Awardeeshere.

STAR Act Supported by 130+ Members of Congress!

The bipartisan STAR Act is life-saving legislation designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors.

Members of the Alliance for Childhood Cancer, including our CEO George Dahlman, held a "mini lobby day" earlier this month on Capitol Hill, a prelude to the larger Action Day taking place May 1-2. To date, this bill has 131 sponsors and cosponsors in the House and 6 in the Senate.

We must continue to build momentum for this bill's passage, and you can help get us there:

1. Check the cosponsor map to see if your Senators and Representative have signed on.

2. Use our Write Congress form to quickly and easily send a letter to your Members of Congress to thank them for their support or ask them to add their name. We are hoping to quickly gain as many cosponsors as possible to get momentum for this bill's passage.

3. Share this ask with your friends and neighbors. 

Quick Links: Highlights from March

CCCA Formally Endorses Psychosocial Standards of Care: Children's Cause has given our endorsement to the evidence-based psychosocial standards that define a minimum level of care that all children with cancer and their families should receive. We thank the Mattie Miracle Cancer Foundation for spearheading these groundbreaking standards.

Eighty-Seven Organizations Call on Congress to Protect Medicaid: Children's Cause joined with leading patient advocacy organizations to denounce the American Health Care Act and its threat to Medicaid. Although the AHCA effort was defeated, there is much more work to be done to ensure the protection and stability of Medicaid for the one-third of childhood patients who depend on it for their care.

College Scholarships for Survivors: Bristol-Myers Squibb is giving away fifty (50!) scholarships of $10,000 each to childhood cancer or young adult survivors who plan to attend college or vocational school in the fall. The application deadline is today, March31!

In the News: 

Jessica Kean
February 2017: Two major bills introduced in Congress

RACE for Children Act Introduced in Congress

The bipartisan Research to Accelerate Cures and Equity for Children (RACE) Act (S.456) was introduced in both chambers of Congress yesterday, to expand opportunities for childhood cancer studies.

This legislation addresses shortcomings in the Best Pharmaceuticals for Children Act (BPCA, 2002) and the Pediatric Research Equity Act (PREA, 2003), which provide critical information on the safe and effective use of medications in the pediatric populations, advancing the health of children. While BPCA and PREA have yielded important new safety and labeling information for other children's diseases, the laws have had a very modest impact on childhood cancer. These two laws act in tandem as both carrot and stick to encourage new drug development for childhood diseases -- but exceptions have resulted in limited effectiveness for childhood cancer.

The RACE for Children Act could change that by eliminating those exemptions and improving opportunities for more studies in childhood cancer. Furthermore, the legislation would determine whether childhood cancer studies are warranted based on the "method of action" or affected biomarkers, rather than the site of the cancer, which is now the basis of most cancer drug development.

We thank the bill's original cosponsors, Senators Michael Bennet (D-CO) and Marco Rubio (R-FL) and Reps. Michael McCaul (R-TX) and G.K. Butterfield (D-NC), and we hope many more will sign on in coming weeks.

Take action here to ask your Members to sign on!

Ask Congress to Support Reintroduced STAR Act

82 House Cosponsors and Counting!

The Childhood Cancer Survivorship, Treatment, Access & Research (STAR) Act of 2017 is sweeping childhood cancer legislation that will help children with cancer live longer, healthier lives, reintroduced this month as H.R.820 and S.292. The STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress.

The STAR Act is important bipartisan legislation designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors.

The bipartisan Childhood Cancer STAR Act of 2015 was passed by the U.S. House of Representatives in the closing days of the 114th Congress but did not clear the Senate before the end of the session. We have high hopes to see this bill signed into law this year but we need your help to get there:

1. Check the cosponsor map to see if your Senators and Representative have signed on.

2. Use our Write Congress form to quickly and easily send a letter to your Members of Congress to thank them for their support or ask them to add their name. We are hoping to quickly gain as many cosponsors as possible to get momentum for this bill's passage.

3. Share this ask with your friends and neighbors. 

This legislation has broad support from the childhood cancer community, including the Alliance for Childhood Cancer. We join the Alliance in thanking the bills' original cosponsors: Senators Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), and Jonny Isakson (R-GA) and Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA) and G.K. Butterfield (D-NC).

Ask your Members of Congress to sign on to this legislation.

Weighing in on Healthcare Replacement Proposals

The recent release of a 19-page policy brief drafted by Republican leaders in Congress is the first concrete outline of a GOP healthcare strategy in this new Congress. As "repeal and replace" discussions heat up in Washington, the Children's Cause continues to speak up about the critical importance of affordable, accessible coverage for our most vulnerable, including children with cancer and survivors.

Combined, the Affordable Care Act, Medicaid and the Children's Health Insurance Program (CHIP) cover over 40 million children and adolescents in our country. Medicaid covers more than a third of childhood cancer patients. Any changes to these programs must carefuly and comprehensively consider the impact on these vulnerable populations.

We share some quick links here to learn more and take action:

- NEW: A letter to Congressional leaders from the Alliance for Childhood Cancer

- On our blog: Quick Healthcare 'Fixes' Put Children with Cancer at Risk

- NPR: GOP Considers Trimming Health Law's 10 Essential Benefits (2/22/17)

- Vox: Cancer Can Bankrupt its Victims -- Obamacare was Designed to Stop That (2/23/17)

- The Washington Post: Cancer Patients, Survivors Fear GOP Efforts to Dismantle the Affordable Care Act (2/23/17)

- Children's Cause Letter to the co-chairs of the Childhood Cancer Caucus (PDF)

- Take action: Ask Congress to Protect Healthcare Access for Children with Cancer

We are urging policymakers to protect children and adolescents with cancer and the nation's 500,000 childhood cancer survivors as Congress considers any replacement proposal.

Speaking out on Vaccine Safety

The Children's Cause joined hundreds of other health organizations in sending a letter to President Trump, emphasizing that vaccines are safe, effective and save millions of lives. The letter includes a non-exhaustive list of scientific studies demonstrating the safety of vaccines, with the offer to meet and share more.

An excerpt from that letter: 

"On behalf of organizations representing families, providers, researchers, patients, and consumers, we write to express our unequivocal support for the safety of vaccines. Vaccines protect the health of children and adults and save lives. They prevent life-threatening diseases, including forms of cancer. Vaccines have been part of the fabric of our society for decades and are one of the most significant medical innovations of our time."

Immuno-compromised children rely on the strength of 'community immunity' to keep them safe. The Children's Cause is steadfast in our belief that families battling pediatric cancer face many unavoidable health challenges but they should never have the life of their child threatened by a disease that could have been prevented if only their peers had been appropriately vaccinated.

We encourage you to send your own letter to President Trump on this or any other subject impacting children with cancer.

Jessica Kean