All posts tagged: Advocacy

Guest Blog–AACR Issues Calls to Action to Advocacy Colleagues and Supporters of NIH Funding

April 21, 2025
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Shared with permission from and thanks to the American Association for Cancer research. This post contains information about the “Rally for Medical Research ‘On the Road’” initiative, which probably could not be coming at a more important time based on all of the troubling and concerning news for medical research that seems to be reported on a daily basis. The most troubling of the news was reported last week when a leaked document showed that there may be plans for a 40 percent cut (a $20 billion cut) to NIH’s budget as part of the FY2026 White House budget request. […]

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Community News–Childhood Cancer Advocates Support Successful 2025 Action Day!

February 28, 2025
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The Alliance for Childhood Cancer sends its thanks for a fantastic Action Day on February 28.  348 advocates from 40 states participated and shared their stories in 222 meetings, 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: ASK 1:  Prioritize a “Childhood Cancer Package” Last year, the House of Representatives unanimously passed two bills with important provisions related to pediatric drug development, clinical trials, and access to care. Together, these bills represent the most influential childhood cancer legislation since […]

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SPECIAL YEAR-END ADVOCACY ALERT

December 23, 2024
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There were five pieces of legislation that had gained a lot of support across both the House and the Senate over the past two years thanks to the collective efforts of the childhood cancer community and our legislative champions:   ACCELERATING ACCESS TO CARE ACT: Streamlines out-of-state treatment for children on Medicaid. GABRIELLA MILLER KIDS FIRST RESEARCH ACT 2.0: Extends research funding authorization for another seven years. GIVE KIDS A CHANCE ACT: Supports pediatric studies on new cancer drug combinations. INNOVATIONS IN PEDIATRIC DRUGS ACT: Imposes financial penalties on drug companies that fail to complete required pediatric studies. PRIORITY REVIEW […]

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CAC2 Advocacy Alert: End-of-Year Call to Action

December 9, 2024
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During our October federal advocacy drop-in session, we learned about several pieces of legislation that had a good chance to pass before the end of the year and also alerted everyone that “advocates may be called on to make a final push between now and the end of the year.”  That time has come! During this week of action, we need your help: Accelerating Kids’ Access to Care Act—230 organizations (about a third from CAC2) have signed a letter urging lawmakers to pass the bill in the end-of-year legislative package (here’s a link to that letter). Beginning today, December 9th […]

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NCI Advocacy Update

July 8, 2024
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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!

May 28, 2024
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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

May 27, 2024
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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!

February 22, 2024
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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

January 24, 2024
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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

July 28, 2023
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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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