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.

Donate

Jessica KeanFebruary 28, 2017

January News: CCCA's 2017 Policy Agenda

CCCA Outlines Policy Goals and Priorities for 2017

The 2017 policy agenda for CCCA addresses the most significant barriers to care along the continuum of the childhood cancer journey: access to care; the availability of treatments; and the post-treatment survivorship landscape.

Among our many policy plans in 2017:

Urge Congress to modify current PREA and BPCA language to accelerate and modernize childhood cancer drug development by providing FDA with more flexibility to apply PREA and BPCA where the science warrants pediatric studies.
Pursue the creation of a public-private drug development business model to identify and develop new therapies for children with cancer.
Urge Congress to support increases in NIH and NCI funding in order to accommodate expanded treatment development and clinical trials for pediatric cancer.
Urge Congress to pass the Childhood Cancer STAR Act, with a particular focus on the survivorship provisions that we have long championed.
Produce a comprehensive assessment of childhood cancer patient demographics identifying access to care and financial burdens.
Strengthen the Children's Health Insurance Program, and ensure that Medicaid/CHIP provide necessary access to care for childhood cancer patients.
Urge Congress to pass the Advancing Care for Exceptional Kids Act.

Read our full policy agenda online.

Related: If you missed our 2016 year-in-review, catch up on our blog!

TAKE ACTION: Weigh in on Healthcare Reform

As Congress moves to repeal the Affordable Care Act, we are asking families who have been impacted by childhood cancer to tell Congress about your insurance needs and concerns. Use our webform to contact your Members of Congress and urge them not to repeal the ACA without a responsible replacement plan in place.

As a member of the Cancer Leadership Council, we signed on to a letter to Congress in December, urging due caution as changes to the Affordable Care Act are considered in the coming legislative session. More recently, we sent a letter to the co-chairs of the Congressional Childhood Cancer Caucus.

"We urge policymakers to protect children and adolescents with cancer and survivors as Congress considers the Affordable Care Act (ACA), Medicaid, and the Children's Health Insurance Program (CHIP). These programs currently cover over 40 million children and adolescents in our country, and any changes must consider the impact on these vulnerable populations. Specifically, any structural or policy reforms should not diminish coverage or access for children with cancer.

... Children in need of active treatment and appropriate symptom management, as well as survivors who need ongoing care including monitoring, follow-up services, and preventive services, could be adversely affected by significant disruptions in the insurance market. We support access to care for cancer patients across the continuum of their disease without a period of uncertainty in the insurance market that might result in loss of access to affordable insurance coverage and therefore access to care." (Full letter)

ALSO: Share Your Childhood Cancer Story with President Trump

We've launched an action alert to give you an opportunity to ensure that the new Administration understands the multitude of challenges facing children with cancer and childhood cancer survivors. Be a voice and share your story!

DIPG Awareness Resolution Introduced in Congress

Today, Representatives Steve Knight (R-CA) and Jackie Speier (D-CA) introduced the National DIPG Awareness Resolution. This legislation aims to raise awareness to the plight of childhood cancer through the lens of Diffuse Intrinsic Pontine Glioma (DIPG). It also calls for May 17, 2017 to be National DIPG Awareness Day.

This bill was drafted in part by our friend and colleague Janet Demeter, founder of Jack's Angels Foundation in Agua Dulce, California. We recognize and thank Janet for her hard work and for this tremendous achievement.

See the Jack's Angels press release for more details.

The Close of One Congress - and Preparing for Another

The election earlier this month surprised almost everyone. People across the country have since been adjusting both intellectually and emotionally as we move toward a Trump Administration and Republican control of both the House and Senate. The shock waves in Washington have been especially seismic, with policymakers recalibrating - and recalculating - how to position themselves and their agendas.

The same is true for advocates committed to battling childhood cancer. While the goals of developing better treatments, access to care and quality survivorship remain, the outcome of the election changes many of the strategies and approaches.

One thing is certain, however: Families and patients dedicated to the fight will need to be even more focused, more engaged and more vocal. CCCA will be aggressively targeting any threats to the welfare of our kids and, as always, alerting advocates when they need to make their voices heard.

But before a new Congress and Administration take over in January, there is some urgent unfinished business in the current 'lame-duck' Congress. These are especially critical to childhood cancer advocates - and everyone will need to make their voices heard in the next couple of weeks.

Read on to find out more about these bills and what you can do to help ensure their passage in the final 13 work-days of this legislative session.

Register Now for our 12/8 Webinar: What Does the New Administration Mean for Childhood Cancer?

Don't miss this Children's Cause for Cancer Advocacy webinar, on the one month anniversary of the 2016 Election. Join us Thursday, December 8th at 5pm EST as we explore further what a Trump Administration could mean for childhood cancer, including:

The outlook for childhood cancer research;
The future of coverage for care;
How to become an effective advocate; and
How to help us launch the CCCA Kids Action Network.

George Dahlman, CEO of Children's Cause, and Ziky Ababiya, Legislative Assistant for Rep. Chris Van Hollen will present, along with a to-be-named Republican counterpart.

Registration for this webinar is limited!

Reserve your spot today.

New York Event Exceeds Fundraising Goal: Thank you!

The Children's Cause was pleased to host another successful reception and silent auction at the James Burden Mansion in New York City earlier this month. We're so grateful to everyone who supported this year's event, which helps make our year-round advocacy work possible.

A highlight of the lovely evening was the presentation of the first Leonard M. Rosen Memorial Research Award. As pictured above, Adam Rosen presented the award to Mary McCabe, Director of the Cancer Survivorship Initiative at Memorial Sloan-Kettering Cancer Center. Ms. McCabe is widely recognized as a leader in cancer survivorship with the development of comprehensive programs for cancer survivors. In acknowledgement of the Award, Ms. McCabe will initiative a guest lectureship at MSK to focus on the ethics issues related to the development of new therapies for children including the issue of informed consent and specimen banks, novel clinical trial design, and how best to include children in the hoped-for benefits in targeted therapies.

We'd like to give special thanks to the Event Committee, especially event co-chairs Susan and Stephen Scherr and Lynn Bayard, and the many dedicated vendors and auction item donors for their generosity. We also thank the evening's sponsors: PhRMA, Biotechnology Innovation Organization, Fennec Pharmaceuticals, Juno Therapeutics, Novartis Oncology, and Pfizer Oncology.

Visit our blog to learn more about the Rosen Award and view photos of the beautiful evening, captured by Sarah Merians Photography.

Consider Designs that Donate in Your Holiday Shopping!

If you're searching for beautiful jewelry and accessories this holiday season, we suggest you check out Designs that Donate. They find unique items from designers around the world and then donate a percentage of your purchase total to the charity of your choice.

We're excited to be a featured charity for the month of December on Designs that Donate, and we hope you'll show your support by shopping their site!

designsthatdonate.com

Check Your Year-End Giving Off Your List!

Yesterday was #GivingTuesday, and it marked the kick-off of our year-end giving campaign. We thank those of you who joined in the national movement to give back, after the flurry of Black Friday and Cyber Monday shopping.

Giving Tuesday may be over but the giving season has just begun. We are counting on your end-of-year generosity now more than ever, as we look ahead to the policy challenges facing children with cancer in 2017. (Bonus: If you check your year-end giving off your list today, we'll check you off our own list and spare you our December email appeals!)