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.

Recommended Reading {Quick Links}

The Blood-Brain BarrierCAC2 Webinar (1/26/17): The Coalition for Childhood Cancer (CAC2) presented its January 2017 all-member webinar onemerging technology using ultrasound and microbubbles to deliver therapeutic agents across the blood-brain barrier. 

How Precision Medicine Could be a Lifesaver for Kids with Brain CancerForbes (1/19/17): "The study, led by the Harvard-affiliated Dana-Farber/Boston Children's Cancer and Blood Disorders Centers, involved sequencing the genes of 200 tumor samples from children with brain cancer. The researchers found that 56% of the tumors had genetic abnormalities that could influence how the disease was diagnosed or treated by drugs already on the market or in clinical trials."

Biden to Tackle Broad Range of Cancer Issues, including Drug PricesThe Washington Post (1/4/17): "Vice President Biden, who led the Obama administration's 'cancer moonshot' initiative, will create a nonprofit organization to grapple with a broad range of cancer issues, including the high cost of cancer drugs, he said in an interview."

A New Urgency to Protect Survivors of Childhood Cancer, The Washington Post (12/25/16): "[Greg] Aune, like a growing number of scientists and clinicians, is focusing intently on 'late effects' of cancer treatments. Many of these researchers work in clinics designed specifically to monitor the health of childhood cancer survivors and alert them to potential risks. With the ranks of survivors swelling, there is an urgent need to understand the treatments' effects on the entire body, not just the tumor, and to come up with less-toxic therapies."

Jessica Kean