The St. Baldrick’s Speak Up for Kids’ Cancer advocates played an instrumental role in facilitating monumental legislative achievements for kids with cancer in 2018.
In April, the 46 Mommas descended upon Capitol Hill from across the U.S. (and Hawaii!) for “Mommas Go to Washington”, an action-packed two-day event that included advocacy training, head shaving, and meeting with Members of Congress in support of the Childhood Cancer Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act and continued robust funding for the National Institutes of Health (NIH) and childhood cancer research.
Just one week later, St. Baldrick’s and other childhood cancer advocates headed to Washington, DC, for the Alliance for Childhood Cancer Action Days. Once again advocates met with members of Congress to reinforce the 46 Mommas’ requests to seek support for the STAR Act and increased funding for the NIH and childhood cancer research.
Making appearances in the nation’s capital for Action Days were St. Baldrick’s families, Honored Kids, and 2018 Ambassadors, Julia, Kellan, Zach and Brooks’ family.
STAR Act is Signed into Law
In June, our collective persistence paid off when the STAR Act was passed into law. It’s the culmination of years of work by those, like St. Baldrick’s and our supporters, dedicated to helping kids with cancer survive and enjoy long, healthy lives.
When he signed the bill into law, President Donald J. Trump invited representatives of St. Baldrick’s to join him in the Oval Office for the official signing ceremony. The President said, “This vital legislation will expand opportunities for childhood cancer research, enhance the quality of life for childhood cancer survivors, and increase pediatric expertise at the National Institute of Health. Very big deal. Very important to everybody here, and, really, very important to the country.”
Congressman Michael McCaul (R-TX) added, “This is the most comprehensive childhood cancer bill ever passed by the United States Congress. And it wouldn’t have been possible if we didn’t have the advocates strongly behind us, like St. Baldrick’s.”
Danielle Leach, St. Baldrick’s Senior Director of Government Relations, placed much of the credit for the STAR Act victory with St. Baldrick’s supporters – from people who donated money to those who sacrificed their time. “You made this happen,” Danielle said in a July 2018 blog post on the STAR Act’s success. “Your calls, your emails, your visits to the Hill, your social media posts all made a difference.”
For Danielle, whose sister is a childhood cancer survivor and whose son, Mason, died of cancer at age 5, the victory was personal. Looking forward, she hopes the STAR Act’s passage will improve outcomes and save kids like her son. “I have seen the miracle of research and science for my sister and I have seen where the research was not there yet to save my son,” Danielle said.
While she’s encouraged by the victory, Danielle knows there’s still much work to be done. “Now the hard work begins to get this legislation implemented and funded every year for the next 5 years,” she said. “We will need you every step of the way to make sure the Childhood Cancer STAR Act is fully funded. Share your stories and take action again, and again and again.”
Other Noteworthy Legislative Achievements in 2018
Our advocates weren’t just busy on Capitol Hill this year. Many of you took the time to meet locally with your Members of Congress during Congressional recess periods to reinforce the notion that people in your district and state view childhood cancer as a national priority. We’re also grateful for all of you who took action by calling and sending emails to your Members of Congress.
Congress heard your requests loud and clear! The NIH received a $2 billion funding increase for fiscal year 2019. Moreover, several St. Baldrick’s advocates became even more actively involved in advocacy this year through prestigious National Cancer Institute (NCI) and Food and Drug Administration (FDA) committee appointments.
In addition to playing a pivotal role in bringing the STAR Act across the finish line, St. Baldrick’s engaged in discussions with key stakeholders about implementation of the Research to Accelerate Cures and Equity (RACE) for Children Act, which requires that companies developing cancer drugs for adults conduct studies of their drugs in children when the molecular target of their drug is relevant to a childhood cancer. This critical measure has the potential to greatly increase research into new drugs for pediatric cancer, and yield higher cure rates, shorter treatment periods, less toxic treatments, and possibly save kids’ lives.
St. Baldrick’s also advocated for quality of life issues for kids with cancer by working in conjunction with the Patient Quality of Life Coalition to get the Palliative Care and Hospice Education and Training Act (PCHETA) passed by the U.S. House of Representatives in July.
Ensuring that childhood cancer patients receive appropriate palliative care during their cancer experience by appropriately training those that serve those needs, is critical to improving the lives of kids with cancer.
Interested in creating positive change in the lives of kids with cancer? Read more about our advocacy efforts and consider joining the St. Baldrick’s Speak Up for Kids’ Cancer group, which provides information and resources to help you become an advocate for children with cancer and survivors.
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