Families Gather in D.C. for Kids Family Advocacy Day

Child patients and their families are expected to join children’s hospitals from across the country in Washington, D.C. today for Speak Now for Kids Family Advocacy Day.

Reports indicate the goal of the awareness campaign is to address the importance of prioritizing children’s health. As part of the event, patient families will have the opportunity to meet with members of Congress and discuss issues that directly affect their children’s healthcare.

A common conversation expected is on Medicaid. Many families will ask Congress to protect and improve it to ensure children with complex medical conditions get the care they need. As part of this, they will urge legislative leaders to pass the bipartisan Advancing Care for Exceptional Kids (ACE Kids) Act; as well as to support a variety of training programs offered to children’s doctors through the reauthorization of the bipartisan Children’s Hospitals Graduate Medical Education (CHGME) program.

The ACE Kids Act was introduced in 2017 by lead co-sponsors Senators Charles Grassley, R-Iowa, and Michael Bennet, D-Colorado and Representatives Joe Barton, R-Texas, and Kathy Castor, D-Florida. Reports indicate that the legislation is designed with the intent to improve care for children with most medically complex and expensive conditions in Medicaid while also working to reduce spending through coordination of care across multiple providers and services. Additionally, supporters say it would ease access to out-of-state care. As of June 19th, 2018, the Senate bill had more than 30 co-sponsors and the House version had more than 60 co-sponsors.

The CHGME Support Reauthorization Act of 2018 would extend the CHGME program for five years and set full program funding at $330 million annually. It is led by Representatives Gene Greene, D-Texas, and Michael Burgess, R-Texas as well as Senators Bob Casey, D-Pennsylvania, and Johnny Isakson, R-Georgia and supported by more than 80 members throughout Congress.

According to the organization’s website, Speak Now for Kids is an online child advocacy network designed to help bring awareness of the unique challenges children and families face in the changing healthcare system. “We encourage child health champions to learn about the issues affecting children’s healthcare, submit personal stories, read and share stories as well as information, and take action in support of public policies that benefit kids and families.”

The website outlines several key issues to consider; Medicaid, Children’s Health Insurance Programs, Access to Pediatricians and Specialists, and Drug Costs and Shortages.

The following information was provided by Speak Now for Kids.


  • There are over 30 million children who receive coverage via the jointly funded federal-state Medicaid program.
  • Medicaid is a vital lifeline (according to website officials) providing affordable coverage to children in low-income families and to children with special health care needs.
  • Children represent more than 40 percent of Medicaid enrollees but account for less than 20 percent of Medicaid spending.
  • Medicaid also provides children with access to comprehensive, pediatric-specific benefits that are critical to their healthy development.

Children’s Health Insurance Programs:

  • About 6 million children receive coverage via the CHIP program.
  • CHIP is a federal-state health coverage program that provides health insurance coverage for low-income children and pregnant women with incomes that are too high to qualify for Medicaid.

Access to Pediatricians and Specialists:

  • Few physicians, but more kids mean longer wait times. The prevailing benchmark in children’s hospitals for clinic wait times to schedule appointments is two weeks.
  • In certain specialties experiencing shortages, the wait time is much longer. For instance, the average wait time to see a pediatric neurologist is almost nine weeks.

Drug Costs and Shortages:

  • Ensuring access to necessary and lifesaving medicines, as well as vaccines, is critical to the health and well-being of our nation’s children.
  • In recent years, drug costs and shortages have become all too common in the U.S., reaching unprecedented levels.
  • Reasons for this predicament are numerous and complex – lawmakers are working to understand market factors that may play a role in the current problems.

As of 8:00 a.m. on Tuesday participating families were gathering for breakfast ahead of their Washington D.C. tour.

Speak Now Photo

Leave a Reply