We hope you are having a great start to the new year! Read on for legislative updates, upcoming meetings and events, and ways to get more involved as we hit the ground running in 2020.
Legislative Updates and Actions Needed
FY 2020 Appropriations
On December 20, 2019, the President signed the final appropriations legislation for the year. We are THRILLED that we were successful in securing a record high level of federal funding for childhood cancer research!
Within the final funding package, Congress accepted our recommendation to provide $30 million for a major new Childhood Cancer Data Initiative which focuses on the critical need to collect, analyze, and share data to address the burden of cancer in children, adolescents, and young adults (AYAs). The initiative will support childhood cancer research and aim to make it easier for researchers to learn from each of the approximately 16,000 children and adolescents diagnosed with cancer in the United States each year. This new initiative has the potential to revolutionize childhood cancer research.
In addition to this funding, we were successful in securing $30 million in the federal budget to fully fund the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act this year. As you know, the STAR Act is the most comprehensive childhood cancer bill in history. It was signed into law in 2018 and with this new funding, the federal government will continue to expand its work to better track childhood cancer nationwide, conduct new research into survivorship and set up a national childhood cancer biorepository to assist in breakthrough research to find better treatments and cures.
Also in the final funding bill was funding for the National Institutes of Health (NIH), which received $41.7 billion — a $2.6 billion increase over last year. Congratulations to the whole childhood cancer community for your work to ensure that your Members of Congress understand that childhood cancer must be a top national health priority. Your meetings calls and emails during the past year helped achieve the largest funding increase for childhood cancer in history!
Palliative Care and Hospice Education and Training Act (PCHETA) – H.R. 647, S. 2080
Palliative care is a critical component of treatment for many kids with cancer. The Palliative Care and Hospice and Education and Training Act focuses on expanding the interdisciplinary palliative care workforce, promoting awareness of the benefits of palliative care among patient and providers, and improving the evidence base for palliative care.
Last year, the House of Representatives passed PCHETA with overwhelming bipartisan support, and now the bill is building momentum in the Senate. We are so close to getting this bill across the finish line. Please contact your Senators today to ask them to cosponsor the Palliative Care and Hospice Education and Training Act so we can move one step closer to passing this important bill into law!
Hello from Sarah Milberg, St. Baldrick’s Director of Government Relations and Advocacy
I’m Sarah Milberg, and I am so excited to join St. Baldrick’s as the new Director of Government Relations and Advocacy! I come to St. Baldrick’s from The Leukemia & Lymphoma Society where I led LLS’s federal policy work on childhood cancer, including serving as a co-chair of the Policy Committee of the Alliance for Childhood Cancer. As a new mom and as the wife of a young adult cancer survivor, I care so deeply about our mission to conquer childhood cancers, and I can’t wait to work with you in the days and weeks ahead!
Meetings and Events
Rare Disease Week on Capitol Hill
Mark your calendars for Rare Disease Week on Capitol Hill — February 24th to 28th. Rare Disease Week convenes members of the rare disease community from across the country in Washington, DC to learn about federal legislative issues, meet other advocates, and share their rare disease stories with Members of Congress. A sample of the week’s events includes:
- Monday, February 24th: FDA’s Rare Disease Day Public Meeting, FDA, 10903 New Hampshire Ave, Silver Spring, MD
- Tuesday, February 25th, 1:00-2:00 pm: Rare Disease Congressional Caucus briefing Russell Senate Office Building, Room 325
- Friday, February 28th, 8:30 am to 4:00 pm: Rare Disease Day at NIH in Bethesda, MD, 9000 Rockville Pike, Bethesda, MD
Stay tuned for ways that you can participate in Rare Disease Week from home!
Invite your Members of Congress to a Local St. Baldrick’s Event
Help build our army of childhood cancer champions by inviting your Members of Congress to join in the fun of attending a St. Baldrick’s event in your area.
Members of Congress will be in their home states and districts during the following dates over the next few months. If you have a local St. Baldrick’s event during one of the upcoming district work periods, invite your Representative and Senators to participate as a guest barber — or better yet, a shavee!
- February 18-23
- March 14-22
- April 4-19
- May 23-31
Encourage Congressional staff to attend your event as well. Witnessing the inspiration of kids with cancer, combined with the power of community at St. Baldrick’s events, will help expand our base of childhood cancer advocates and amplify the voice of kids impacted by cancer.
Invite your Members of Congress to #DFYchildhoodCancers by inviting them to attend an upcoming St. Baldrick’s event!
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