This June, Children’s National’s Government Affairs team engaged with lawmakers on Capitol Hill to advocate for the pressing issues facing pediatric healthcare. While participating in Family Advocacy Day and hosting Doctor Bear’s University, we highlighted the work that Children’s National does every day to improve the health of the children in our region and beyond. Unfortunately, while healthcare is an integral piece of many policy makers’ agendas, pediatric healthcare often goes overlooked. Through our engagements, we brought special attention to the unique challenges and needs of children’s healthcare.

Family Advocacy Day

On June 12, Children’s National proudly joined the Children’s Hospital Association in its 20th annual Family Advocacy Day. Family Advocacy Day provides a unique opportunity for patients and their families to meet lawmakers and discuss how federal healthcare policy directly affects their day-to-day lives. Two Children’s National families met with our local and regional delegation members to share their journeys directly with lawmakers and legislative staff, highlighting the importance of Medicaid and federal investments in children’s health, specifically through CHGME funding and investments in pediatric research. Meeting with Congressman Raskin, Senator Van Hollen, and staff from Senator Alsobrooks’ and Congresswoman Holmes Norton’s offices, families explained the vital role that Medicaid plays in their lives. This year, Children’s National was represented by the

Juan-Deichsel family, speaking about the role Medicaid plays in their lives, covering the treatment costs for their four-year old’s AP-4-Assosicated Hereditary Spastic Paraplegia that his private insurance does not cover. Additionally, the Detwiler family shared that their 9-year-old son was born with a rare condition called complex gastroschisis, which required the removal of 90% of his small intestine and a portion of his colon, resulting in short bowel syndrome. While not without challenges, the Detwiler family explained that their son is a thriving 9-year-old kid as a direct result of his ongoing specialized care at Children’s National, which has only been made possible by Medicaid.

Children’s National Executive Vice President and Chief Academic Officer, Dr. Nathan Kupperman, joined a group of physicians to advocate for pediatric research and Medicaid funding. Three pediatric patients and their families joined the group in meetings with Representatives from across the country, including California, Iowa, Louisiana, Minnesota, New York, and North Carolina. We are honored to aid in providing the stories that elected officials will reflect on as they draft and vote on key legislation.

Additionally, during Family Advocacy Day, Children’s Hospital Association hosted a science fair on Capitol Hill, highlighting the crucial role of pediatric medical research. Children’s National presented the 3D Cardiac Visualization Laboratory (3DCVL), which integrates advanced cardiac imaging, 3D modeling, 4D flow MRI and computational flow analysis to guide care for children with congenital heart disease. Members of Congress and staffers were able to visit our booth and learn more about the cutting-edge biomedical innovation that Children’s National is proud to lead.

Doctor Bear’s University

After a several-year hiatus, Government Affairs brought back Dr. Bear’s University (DBU), welcoming a bipartisan group of Congressional staffers to spend a day-in-the-life at Children’s National. Staff representing members of Congress from across the country learned about the critical role that Children’s National plays in the DC metropolitan area and beyond, serving patients from every state, and Puerto Rico. The day included rotations with physicians and observing the special care given to young patients. Through hands-on tours and activities, such as observing surgery and touring our helicopter, participants were able to pull back the curtain and get a close-up look at the complexities of pediatric healthcare.

Throughout the day, staffers gleaned that children are not just tiny adults. They must be treated with special considerations in mind. For example, the small, child-sized tools and equipment used throughout the hospital are fundamental to the care that we provide. However, due to the small market, private companies have little-to-no incentive to invest in research, development, and production of such equipment. It is because of government investments, subsidies, and policies that many of these devices exist.

While playing with an array of tools used in emergency transport, staffers not only learned how challenging practicing emergency medicine is, but also understood the important role that the government plays in ensuring that we have access to the proper tools to treat our patients. Participants also met the first patient to receive Gene Therapy at Children’s National to treat his sickle cell disease. After nineteen years of living with sickle cell disease, he has not suffered from a pain crisis since his treatment two years ago – “I have the rest of my life to look forward to,” he explained. Without the support of the NIH, the research and development of the novel treatment would not be possible.

We look forward to the policy considerations that the staffers who joined us will implement, equipped with a new perspective and context.

Closing Thoughts

As pediatric healthcare needs evolve and we search for innovative solutions, we are grateful to be in partnership with decision makers from across the country. It is through this collaboration that we will be able to invest in the health of our children, and consequently, a healthy future. In partnership with the dedicated staff and subject matter experts at Children’s National, the Government Affairs team continues to be dedicated advocates for the needs of all children.