Celebrating a Win for Childhood Cancer Advocacy!

St. Baldrick’s Foundation, perhaps our greatest leader in advocacy today, brings us this amazing news about the STAR Act.  Because of the support of so many individual advocates across the country, and so many supporting organizations for pediatric cancer, STAR is “getting the money” from the Senate Appropriations Committee!  This is the biggest win since President Bush signed into law the Caroline Pryce Walker Conquer Childhood Cancer Act, which called for the same amount of funding to be appropriated, but the crucial step was never taken…until now!

We did it–it took us all, collectively, 10 years.  Ten years to begin the process of truly instating law which helps children.  I hope things accelerate after this.  BUT NOT SO FAST; the corresponding House Committee must also approve. CALL YOUR REPRESENTATIVES OFFICE TO ENCOURAGE SIGNING!  The key legislators who have the most power over this process are listed below for your convenience.

And so, with no further ado, here is the great news from St. Baldrick’s Foundation:

We are excited to share that the STAR Act has made significant progress in the Senate Appropriations process. Read on to learn about how you can help keep the enthusiasm high on Capitol Hill and participate in Childhood Cancer Awareness Month in September!

Legislative Updates

Childhood Cancer STAR Act (Public Law No: 115-180):

We are grateful that the Senate Appropriations Committee approved a spending bill for FY 2019 that included the language necessary to fund the STAR Act. Special thanks to Labor/Health and Human Services (HHS) Subcommittee Chairman Roy Blunt and Ranking Member Patty Murray for their timeliness in ushering the bill through Committee.

For the CDC surveillance programs, the Senate Appropriations Committee’s report included an increase of $2 million for state cancer registries to help better track cancer in children, adolescents, and young adults.

For the STAR Act programs funded through the NIH, the Senate Appropriations Committee’s report included additional funding for HHS operating divisions, such as funding for the NCI to support childhood, adolescent, and young adult cancer survivorship research, as well as biospecimen research and funding for the CDC to enhance pediatric, adolescent, and young adult cancer surveillance.

Why Is There a Specific $ Amount in the CDC and not in the NIH Provisions? The Appropriations process is often complex and confusing. Congress is willing to put a specific dollar amount for funding in CDC programs, but typically does not include a specific dollar amount in the NIH provisions of the bill to avoid disease-specific earmarking. However, we’re very pleased that the language included by the Senate will provide the funding necessary to set up and begin work on all the STAR Act programs — both CDC and NIH.

House of Representatives

The House Appropriations Committee began work on their Labor/HHS Appropriations bill before the President signed the STAR Act into law, and therefore funding language could not be included.

However, we are happy to report that our House Champions have already had conversations with House Labor/HHS Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) about STAR Act funding. The full House has not yet taken up the bill for consideration. In addition, they must conference their bill with the Senate later this fall to reach agreement on a final funding bill to send to the President. We are working to ensure that the House agrees to the Senate funding for the STAR Act.
How you can help
Reach out to Members of the House Labor/HHS Appropriations Subcommittee and urge them to fully fund the Childhood Cancer STAR Act. If you are a constituent of any of the Members listed below, please reach out now!

Members of House Labor/HHS Appropriations Subcommittee

Republicans
Tom Cole, Oklahoma, Chairman
Mike Simpson, Idaho
Steve Womack, Arkansas
Chuck Fleischmann, Tennessee
Andy Harris, MD, Maryland
Martha Roby, Alabama
Jaime Herrera Beutler, Washington
John Moolenaar, Michigan
Democrats
Rosa DeLauro, Connecticut, Ranking Member
Lucille Roybal-Allard, California
Barbara Lee, California
Mark Pocan, Wisconsin
Katherine Clark, Massachusetts
District Meetings during August Recess
The House was in recess this month and will return to Capitol Hill on September 4. Special thanks to all of you who contacted us with interest in scheduling a district meeting with your Representative this month! We are inspired by your passion and your dedication to supporting the STAR Act on behalf of kids impacted by cancer. Every meeting helps build relationships with Hill offices and lays the foundation for making childhood cancer a higher national priority. If you are planning to come to D.C. in September, please email advocacy@stbaldricks.org and we can help you set up a meeting with your Member of Congress.

Advocates Heather and Harper Jones (mom and sister of Honored Kid Evan) at a district meeting with Congressman Brett Guthrie (R-KY) this month to discuss the STAR Act.
Palliative Care and Hospice Education and Training Act (PCHETA) — H.R. 1676/ S. 693:
The Palliative Care and Hospice Education and Training Act (PCHETA) aims to establish education centers, provide physician and nurse training in palliative medicine, provide incentive awards to individuals to support career development in the areas of palliative care and hospice, develop a national education and awareness campaign, and expand national palliative care research programs.

Thank you to all who helped to make the PCHETA Virtual Lobby Day on August 3rd a huge success! The HELP Committee Chair’s Health Policy Director is interested in discussing next steps. Stay tuned!

Meetings and Events
September is Childhood Cancer Awareness Month! We invite you to raise your voice. Here’s how:

Rally for Medical Research 2018
September 12-13, 2018

St. Baldrick’s Foundation is a sponsor for Rally for Medical Research 2018. Held every September, this event includes more than 300 national organizations joining together to ask Congress to make NIH funding a high priority and to raise awareness about the importance of continued investment in medical research that will lead to more progress, more hope and more lives saved. This two-day event includes a Capitol Hill Day Training Session and Meetings with House and Senate Offices.

Learn More

 

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