Advocacy Alert
On Thursday, February 29, 2024, in recognition of Rare Disease Day, the U.S. House of Representatives’ Energy and Commerce Subcommittee on Health will hold a hearing focused on legislative proposals to support patients with rare diseases.
The hearing starts at 10 a.m. ET and will include a discussion on the Accelerating Kids’ Access to Care Act (HR 4758 / S 2372) (AKACA), a bill that could improve the lives of children with brain tumors who often need to seek specialized care beyond the borders of their home state.
AKACA aims to reduce the time it takes children covered by Medicaid or the Children’s Health Insurance Program (CHIP) to access specialized care when doctors in their home state cannot address their treatment needs. Over the past couple of years, individuals and patient advocacy organizations in the childhood cancer community have championed this legislation. Recently, the bill gained significant momentum when Charlie, a 12-year-old brain tumor survivor and advocate with the Pediatric Brain Tumor Foundation, testified to the U.S. Senate Finance Committee about the hurdles families face when seeking treatment for their child.
Charlie’s testimony, which you can read here, helped propel the bill forward with new co-sponsorships from members of Congress. Yet, to see it become law requires your immediate action.
Ahead of Thursday’s hearing, members of the House’s Energy and Commerce Subcommittee on Health need to hear from you about why AKACA’s swift passage is critical.
Additionally, if your states’ representatives and senators are not yet co-sponsors, now is the time to encourage them to stand with children with cancer and their families. Review the current list of co-sponsors in the House here and Senate co-sponsors here.
Help spread the word about Thursday’s hearing by sharing this advocacy alert and Charlie’s testimony with friends, family, and colleagues over social media and email.
Fill out the form below or email [email protected] to connect with PBTF’s Director of Advocacy Mike Henry about talking points and resources to assist you in reaching out to Congress:
Together, we can make a significant stride forward in improving kids’ access to essential cancer care. The time to act is now.
The Accelerating Kids’ Access to Care Act, passed the U.S. House of Representatives on September 17 to improve children’s access to essential health care, while eliminating administrative burdens for providers and states.
“This report lays groundwork to improve the experience of people living with this disease,” said Dr. Sanjay Gupta, CNN’s chief medical correspondent, one of the country’s leading neurosurgeons, and a member of PBTF’s Board of Directors. “I believe it shines a much-needed spotlight on the wide-ranging and extensive challenges that this type of tumor causes for patients and their families, and I am hopeful that this moment is a significant milestone for this community.”
