When children with cancer need treatment, time is of the essence. But often they face burdensome, unnecessary delays or are being treated with therapies that are ineffective and toxic. There are two pieces of critical legislation aiming to change that. However, they first need to be passed by Congress before year-end:

  • Accelerating Kids’ Access to Care Act will address delays in care by creating an alternative opt-in for provider screening and enrollment where providers in good standing could enroll in multiple state Medicaid programs, allowing them to provide essential, time-sensitive care to children who need it. (House Co-sponsorsSenate Co-sponsors)
  • STAR Reauthorization Act will provide five more years of funding for the Childhood Cancer Survivorship, Treatment, Access and Research Act, the most comprehensive legislation addressing pediatric cancer in U.S. history. (House Co-sponsorsSenate Co-sponsors)

On Wednesday, October 19, the Pediatric Brain Tumor Foundation and other pediatric cancer advocates will come together to remind legislators that children and families deserve better treatments and access to care. There are two ways you can join us on the Pediatric Day of Action and ask your representative to co-sponsor the bills or thank them if they already are a co-sponsor:

1. Tweet your legislator:

If your representative hasn’t co-sponsored the STAR Reauthorization Act and Accelerating Kids’ Access to Care Act, tag them in a tweet asking them to co-sponsor. Here’s a preview of what your tweets could say:

  • @[Legislator’s username] Please co-sponsor the STAR Reauthorization Act. This bill continues the funding of groundbreaking research into better treatments for pediatric cancer. #KidsDeserveCures #ChildhoodCancerAwareness
  • @[Legislator’s username] Please co-sponsor the Accelerating Kids’ Access to Care Act. No childhood cancer patient should be left waiting for lifesaving treatment. #KidsDeserveCures #ChildhoodCancerAwareness 

If your legislator has co-sponsored these bills, tweet them on the Pediatric Day of Action to thank them for their support.

2. Call your legislator’s office:

The U.S. Capitol switchboard can easily connect you with your Representatives and Senators.

  • Call the U.S. Capitol switchboard at 202-224-3121 and say: “Hi, can you please connect me with my Member of Congress? My zip code is [zip], thank you.”  Direct contact information for members of the Senate and House of Representatives can be found here and here.
  • Once you are connected with your representative’s office or their voicemail, say the following if they haven’t co-sponsored the STAR Reauthorization Act and Accelerating Kids’ Access to Care Act:

Hi, I’m [your name], one of your constituents from [your town or city]. I want to urge you to protect the health of childhood cancer patients and survivors in any end-of-year package by co-sponsoring two bills:   

First, we need to make sure that pediatric cancer research is funded for another five years, which is why I want you to support the Childhood Cancer STAR Reauthorization Act.   

Second, kids often travel out-of-state for care, to see a specialist, or participate in a clinical trial. For kids on Medicaid, this process can lead to unnecessary delays in care due to administrative red tape, which can cause a child’s condition to worsen. Please co-sponsor the Accelerating Kids’ Access to Care Act to allow kids time-sensitive access to the doctors they need to become survivors. 

[Please feel free to share why these issues matter to you and your loved ones.]”    

  • If you’d also like to call your Senators: Repeat Step 1 and ask to be connected with the senior Senator from your state.  Then repeat Step 1 again and ask to be connected with the junior Senator from your state.
  • If your legislator has co-sponsored these bills, you can also call them on the Pediatric Day of Action to thank them for their support.

More information about both bills can be found in our September Legislative Update, including their co-sponsors.  If you have any questions about a specific bill or this month’s Pediatric Day of Action, please reach out to Mike Henry, our Director of Advocacy, at [email protected].

PBTF is committed to making kids with brain tumors a national health priority, and these pieces of legislation hold the potential to provide families with much-needed relief and drive new scientific discoveries. You can make your voice heard and help us educate Congress about the need to pass this legislation by signing up to be an advocate with PBTF. Sign up to receive future advocacy alerts and join our efforts at www.curethekids.org/advocate.

 

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Pediatric Brain Tumor Foundation Awards More Than $1 Million in New Research Funding to Dana-Farber Cancer Institute

The Pediatric Brain Tumor Foundation (PBTF) proudly announces an infusion of $1 million to help researchers, led by Dana-Farber Cancer Institute’s Drs. Pratiti (Mimi) Bandopadhayay and Rameen Beroukhim, launch a study into a novel therapeutic target and expand their research into overcoming treatment resistance and rebound growth.

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Urgent Action Needed: Congressional Hearing on Accelerating Kids’ Access to Care Act

Recently, the Accelerating Kids' Access to Care Act gained significant momentum in Congress when Charlie, a 12-year-old brain tumor survivor and advocate with the Pediatric Brain Tumor Foundation, testified to the U.S. Senate Finance Committee about the hurdles families face when seeking treatment for their child. Now, to see it become law requires your immediate action.

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