Speak Up for Kids’ Cancer 2015 Advocacy Recap

by Danielle Leach, Director of Government Relations and Advocacy, St. Baldrick's Foundation
December 17, 2015

It has been a remarkable year for childhood cancer on Capitol Hill, and we want to share a few highlights with you!

We’ve been proud to work with the combined childhood cancer community in all of this amazing work. Just take a look at all we have accomplished this year together:

Childhood Cancer STAR Act

Childhood Cancer STAR Act

After months of negotiations and discussions, we were successful in introducing a bipartisan and bicameral piece of legislation: The Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act (S. 1883/H.R. 3381).

This bill, conceptualized and spearheaded by St. Baldrick’s, has received strong support on Capitol Hill, where it currently has 127 cosponsors in the House and 13 in the Senate. Amazing!

Your voice and outreach has an impact! St. Baldrick’s advocates have sent over 4,000 emails to the Hill about the STAR Act asking their member to cosponsor.

To get the STAR Act to the President’s desk for signature next year, we still need to collect many more bipartisan cosponsors in the House and Senate.

We urge you to ask your member of Congress to be a cosponsor, or use our online form to send an email. Please join with us in this incredibly important effort to ensure that childhood cancer gets the attention and resources it deserves by the federal government.

Email Congress

Medical Research Funding Agreement

On December 15, Congress reached an agreement on the final funding levels for medical research for the coming year. The National Institutes of Health (NIH) will receive a remarkable $2 billion increase, for a total funding level of just over $32 billion. This amount includes $5.2 billion for the National Cancer Institute (NCI), a $264 million increase.

St. Baldrick's researcher

In an era of tight federal budgets, this is an amazing achievement. Our SBF advocacy team and our families pushed hard on the Hill several times this year with One Voice Against Cancer and the Alliance for Childhood Cancer to let them know this is a priority for our community.


St. Baldrick’s Testifies Before Congress

In April, St. Baldrick’s was asked to testify before Congress, making the case to the House Labor/HHS Appropriations Subcommittee on the importance of funding childhood cancer programs.

Danielle Leach, St. Baldrick’s Director of Government Relations and Advocacy, told the story to a packed room of her son, Mason, who died from brain cancer. She received strong support from all the members of Congress on the panel — Republicans and Democrats alike.

Scott at the podium

Danielle was asked to return in September to speak at the annual House of Representatives Childhood Cancer Caucus Summit to speak about the STAR Act. She was joined by 6-year-old Scott Lenfesty, who spoke about his experience with childhood cancer.


Congress Adopts Childhood Cancer Research Language

In February, St Baldrick’s, with the Alliance for Childhood Cancer, drafted a letter to Congress, calling for childhood cancer to become a higher funding priority. For the first time in 25 years, the community came together to speak with a unified voice when 91 childhood cancer groups signed on to our letter, making the case for strong funding for existing childhood cancer research programs at the NCI and calling for a special focus on children in cancer survivorship programs.

Childhood cancer advocates

Both the House and Senate Appropriations Committee agreed with our priorities and included all of our proposed language and requests in the annual appropriations bills. Now we must follow up to keep the pressure on NCI to follow through.


Childhood Cancer Community United

St. Baldrick’s led an effort that began in 2014 to bring all the groups of the childhood cancer community together through a roundtable process with the Alliance for Childhood Cancer. Our goal was to help the community identify our common goals and decide on effective strategies that will allow us all to work together. This process led to the creation of the Childhood Cancer STAR Act.

Childhood cancer advocates

Collaboration is critical in any effort to create change in childhood cancer. We are committed to bringing the voice of children and their families to the Hill and are determined to work with our larger childhood cancer community to create the changes needed to conquer childhood cancer together.

We’re equally proud to have dramatically increased name recognition and respect for the St. Baldrick’s Foundation on Capitol Hill this year.

All of us at St. Baldrick’s thank you for your great support, and we look forward to continuing this important work with you in 2016!

Learn more about St. Baldrick’s advocacy network and how you can be a voice for kids with cancer!

Speak Up for Kids’ Cancer

Read more on the St. Baldrick’s blog: