All posts tagged: Advocacy

NCI Advocacy Update

The NCI Council of Research Advocates met virtually on June 26 and heard the latest legislative report, with updates on appropriations, cancer-related legislation, and other ways that NCI is engaging and advocating.  The full deck is below, leading with the latest on the budget progress. Slide 14 highlights Congressional Staff meeting with NCI Director Dr. Kimryn Rathmell and NCI pediatric oncology experts (May 29, 2024).       The presentation also highlighted several pieces of legislation of interest to our community: Pediatric Cancer Drug Supply Act of 2024 (H.R. 6963), which directs HHS to establish a program to create a [...] Read more

CAC2 Member Blog–Accelerating Kids’ Access to Care Act (AKACA) Gains Traction in Congress and Needs Your Help!

By CAC2 Member Matt Marks (Leukemia & Lymphoma Society) State borders shouldn’t be barriers to treatment for children with cancer or other complex illnesses. Yet all too often, they cause challenges—or even treatment delays—for children and their families who rely on Medicaid or CHIP for their health insurance. That’s why I encourage our community to champion the bipartisan Accelerating Kids’ Access to Care Act (AKACA).  This bill would reduce the paperwork required of doctors treating children from out-of-state, so that children can receive the care they need faster and with fewer delays. Recently, the U.S. House of Representatives’ Energy and Commerce […]

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Community News–Health Subcommittee Markup in the House Energy & Commerce Committee Advances Legislation for Children with Cancer

The Energy and Commerce Committee advanced proposals earlier this month that will extend Americans’ access to telehealth services, strengthen and preserve Medicaid, and encourage innovation to help children with rare diseases. In a Subcommittee markup, the Health Subcommittee forwarded 21 pieces of legislation to the Full Committee for consideration.  Several of them are important to the childhood cancer community: Creating Hope Reauthorization Act (HR 7384). Pharmaceutical companies developing treatments for rare diseases that mainly affect children are eligible for rare pediatric disease priority review vouchers supporting their work. Children represent about half of all people living with a rare condition. […]

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Community News–Childhood Cancer Advocates Support Successful 2024 Action Day!

The Alliance for Childhood Cancer sends its thanks for a fantastic Action Day on February 14.  More than 225 advocates from 32 states participated and shared their stories, asking for congressional support for important legislation and funding for childhood cancer.  CAC2 members, Alliance members, and many others across the country had their voices heard. This year’s asks: Federal Funding for Childhood Cancer Programs We request $30 million to fully fund the Childhood Cancer STAR Reauthorization Act for a 7th year and $50 million to fully fund the Childhood Cancer Data Initiative (CCDI) for a 6th year. Additionally, we urge Congress […]

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CAC2 Webinar–Action Days: Know Before You Go

Action Days 2024 takes place February 13-14, 2024, in Washington, D.C. Childhood cancer advocates will have another opportunity to speak with members of Congress to gain support for legislation pending in both the House and Senate. To help prepare CAC2 members before we visit Capitol Hill, we hosted an information webinar with Rosie Abbott, Head of Government Relations at St. Baldrick's, and the Alliance for Childhood Cancer.  CAC2 Board Member Susannah Koontz began the webinar with a review of the legislative accomplishments for our community in 2023. Even if you can't attend, the information is helpful in understanding the issues [...] Read more

Community News–Update on Federal Childhood Cancer Appropriations Process

Update from our colleagues at the Alliance for Childhood Cancer (July 28, 2023): The Senate Appropriations Committee has released its Fiscal Year 2024 Labor-HHS Appropriations bill, and we are excited to report that it included language to fully fund the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative again this year.   If you are interested in the details you can find the report language that specifies our Labor-HHS funding priorities is available here.  We still have more work to do heading into the fall to make sure our priorities remain in next year’s budget, but the inclusion of STAR and […]

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CAC2 Webinar–Make Your Voice Heard Alliance for Childhood Cancer Action Days 2023

We learned more about the Alliance for Childhood Cancer Action Days, which is returning to Washington, D.C., this year for the first time since 2019. Action Days allows you to speak with your members of Congress and their staff to advocate for important childhood cancer issues before Congress. Sharing your story will ensure the voice of kids with cancer is heard loud and clear on Capitol Hill. Click here for more information about Action Days April 24-25, 2023. Make Your Voice Heard PowerPoint Sarah Milberg Sarah Milberg is the Director of Government Relations and Advocacy for the St. Baldrick's Foundation, [...] Read more

CAC2 Webinar–Pediatric Cancer Advocacy – From Your Own Backyard

Many think of advocacy as traveling to Washington DC and speaking to their Senators and members of Congress, convincing them to pass legislation like the STAR Act. While this is an essential part of advocacy, there are many things that you can do within your state that do not involve travel or engaging politicians. Ann Ramer presented opportunities for connecting with your local Childhood Cancer Community and highlighted the available tools on the CAC2 member page to support your effort. Ann Ramer, MPH Ann is a mother of four children, two of whom developed multiple forms of cancer. She is [...] Read more

CAC2 Member Blog–Celebrating the Introduction of The Comprehensive Cancer Survivorship Act

By CAC2 Member Jess Kean, Children's Cancer Cause. The Comprehensive Cancer Survivorship Act was introduced in Congress on December 14, 2022. As the only childhood cancer organization involved in the drafting of this legislation, CAC2 Member Children's Cancer Cause is pleased to share the details of this bill with other CAC2 members in the hopes that the community will join us as we work toward its passage. The Comprehensive Cancer Survivorship Act addresses care planning, transition, navigation, reimbursement, quality, and so much more. It aims to address gaps in survivorship care and develop desperately needed standards to improve the overall [...] Read more

Save the Date! Action Days 2023 Returns to Washington, D.C.

By Guest Blogger Sarah Milberg, Co-Chair of the Alliance for Childhood Cancer and Director of Government Relations and Advocacy for the St. Baldrick’s Foundation Thanks to advocates like you, we have been able to make great progress on important childhood cancer issues before Congress. The Alliance for Childhood Cancer is excited to announce that Action Days 2023 will return back to Washington, D.C. from April 24-25, 2023. Registration will open in early 2023. Action Days gives you an opportunity to speak with your members of Congress and their staff to advocate for important childhood cancer issues before Congress. Sharing your story next […]

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