Monthly Vitals: Your Advocacy Update

Stand up for kids in year-end legislation

Pediatric hospitals continue to be flooded with children impacted by mental health crises and are bracing for another season of respiratory illnesses and other health care needs. It is critical that Congress take action before the end of the year to sustain children's hospitals' ability to provide high-quality, timely, and appropriate care. Our children and adolescents cannot wait for needed federal support.

CHA has laid out our most-pressing priorities in this letter, which asks Congress to:

Pass Accelerating Kids’ Access to Care Act

The Accelerating Kids’ Access to Care Act has strong bipartisan support and passed the House of Representatives by voice vote in September 2024. We ask that you include this vital legislation in an end-of-the-year package to improve children’s access to essential health care while eliminating administrative burdens for providers and states.

Prevent Medicaid Disproportionate Share Hospital (DSH) cuts

Hospitals are facing $8 billion in annual payment cuts to the Medicaid DSH program, which are scheduled to begin January 1, 2025. We ask Congress to act immediately to stop these cuts as they would be devastating to children’s hospitals and their ability to provide care for children.

Support CHGME

We are grateful for the robust funding Congress has proposed for CHGME and are hopeful that you can maintain this support without any policy riders as you seek to complete your work for fiscal year 2025.

Stop harmful proposals that impact children’s access to care

We ask that you consider the unique and harmful impact certain health care policies, like site neutral or attacks on 340B, can have on access to care for children.

Ensure children’s hospitals can participate in the hospital at home program

We are asking Congress to ensure children’s hospitals can participate in the Hospital at Home program so children with complex conditions can get the care they need in the best setting for them.

Support pediatrics in hurricane relief package

We hope you will include the following priorities in a hurricane relief package:

• Prioritize pediatric needs when addressing the IV fluid supply.
• Reauthorize the Emergency Medical Services for Children (EMSC) Program.
• Provide $7 million (level funding) for Pediatric Disaster Centers of Excellence.
• Authorize a one-year extension of the National Advisory Committee on Children and Disasters (NACCD).

Congenital Heart Futures Reauthorization Act becomes law

Thank you to Senators Durbin (D-IL) and Young (R-IN) and Reps. Bilirakis (R-FL), Soto (D-FL), Schiff (D-CA), and Carter (R-GA) for your bipartisan leadership to advance research and awareness about congenital heart defects! This legislation will ensure children will receive timely, high-quality care for congenital heart defects, save children’s lives, and improve their outcomes as they grow.

Kennedy and her teacher become 'heart-twins'

When Kennedy was only six years old, she was diagnosed with a heart defect that required open-heart surgery. Her mom brought her to AdventHealth for Children where doctors guided Kennedy and her family through every step of the surgery. Soon after Kennedy underwent surgery, she connected with an unlikely friend who was going through a similar experience. Her kindergarten teacher had a heart attack and was taken to AdventHealth for cardiac bypass surgery. Read their story and others Made Possible by Your Children’s Hospital.

Support for military-connected families

A CHA report underscores Medicaid’s significance in enabling health care access for nearly 3 million children in military-connected families. The report also highlights how children’s hospitals are a crucial resource for military and veteran families.

More than 2.3 million children in the U.S. help care for, or are impacted by, an active duty or veteran family member. CHA joined the Hidden Helper Coalition to advocate for the mental health needs of children and teens in caregiving homes. By partnering with the Elizabeth Dole Foundation, Nemours Children’s Health, and other members of the Coalition, we can make a greater impact for these families.

Nemours Children’s co-hosted an event with the Elizabeth Dole Foundation and Sen. Tom Carper (D-Del) to raise awareness of the unique needs of children living with a wounded, ill, or injured service member or veteran. The TRICARE for Kids Coalition, of which CHA is a member, sent a letter to Congressional Armed Services leaders sharing recommendations to improve care and access to care — including access to children’s hospitals — for military-connected children in the FY 2025 National Defense Authorization Act.

National IV fluid shortage

CHA sent a letter to Secretary Xavier Becerra requesting the Department of Health and Human Services prioritize pediatric needs with access to IV fluid products. Lack of access to these products is especially critical for pediatric patients, like premature infants, who require additional nutritional support. HHS has since taken action on many of CHA's recommendations in the letter. Children are not little adults. As Congress develops health care policy, we encourage you to prioritize and consider the unique needs of children and the providers who serve them, like children’s hospitals.

Children’s Hospital Association (CHA) works with policymakers in Congress and the administration to advocate for policies that allow children's hospitals and health systems to provide effective, patient-first care and ensure every child has access to high-quality, cost-effective health care services.

Here are the latest updates from CHA’s advocacy efforts.

Legislative efforts

The House passed H.R. 4758, the Accelerating Kids’ Access to Care Act, which improves children’s access to needed out-of-state health care by streamlining the burdensome and time-consuming Medicaid provider screening and enrollment process.

The House also passed H.R. 3433, Give Kids a Chance Act, which allows children to access cutting-edge clinical trials and combination drugs to treat pediatric cancer.

Reps. Lori Trahan (D-MA), Mariannette Miller-Meeks (R-IA), Michael McCaul (R-TX), and Anna Eshoo (D-CA), championed getting these critical bills through the House and on to the Senate.

Panel discussions

In September, CHA hosted a panel on sickle cell disease at the Congressional Black Caucus Foundation’s Annual Legislative Conference. The session featured experts from Children’s Hospital of Philadelphia and Texas Children’s, a patient advocate, and pediatric patients, including Canaan from UH Rainbow Babies in Cleveland.

Canaan’s story reveals the critical need for children and families impacted by sickle cell disease to access life-changing therapies. Learn more about the unique role of children’s hospitals and innovative high-cost therapies.

Childhood Cancer Summit

CHA participated in the 15th Annual Childhood Cancer Summit, where pediatricians from Texas Children’s and Seattle Children’s, pediatric patients, oncologists, and lawmakers spoke on the importance and need for improved pediatric care.

The summit concluded with a two-part presentation on groundbreaking gene and cell therapy research for pediatric cancer treatments. The Childhood Cancer Caucus is led by co-chairs Michael McCaul (R-TX), Kathy Castor (R-FL), Ami Bera (D-CA), and Mike Kelly (R-PA).

Children are not little adults. As Congress develops health care policy, we encourage you to prioritize and consider the unique needs of children and the providers who serve them, like children’s hospitals.