PFD Advocacy in Action: PFD as a stand-alone diagnosis

Published by Jaclyn Pederson, Feeding Matters CEO on Aug 28, 2020

More than a symptom, pediatric feeding disorder is its own diagnosis.

Recently, Feeding Matters received word that the U.S. Centers for Disease Control and Prevention (CDC) has officially approved Pediatric Feeding Disorder to be a stand-alone diagnostic code (R code) in the next edition of the International Classification of Disease (ICD) on October 1, 2021!

“This means that in just 5 short years of collaborating with families and healthcare professionals, Feeding Matters was the catalyst to the stand-alone name, definition, and diagnosis of PFD – a condition so many before us have merely dismissed as a symptom of a different problem.” Shannon Goldwater, Feeding Matters Founder + Emeritus Board Member

This code, combined with the PFD consensus paper, creates a stand-alone diagnosis for PFD marking a milestone that Feeding Matters has achieved one of our main advocacy agenda items. This is the foundation for all of the work we need to do to create a system of care for children with PFD. Creating a stand-alone diagnosis for PFD means validation for families who feel lost and do not know why their child is struggling to eat, and credibility to healthcare professionals who have long been part of a forgotten industry.

We will share more information as it emerges in the months ahead. We ask you to share your questions regarding PFD as a diagnosis so that we can prepare accurate answers. Currently, we are partnering with organizations, governmental agencies, and insurance companies to provide education and support regarding this new diagnosis. By working closely with healthcare professionals and insurance companies, we will develop strategies to promote appropriate use of diagnostic and treatment codes and prevent over-utilization and over-spending while still allowing for accuracy in diagnosing PFD. Recognition of pediatric feeding disorder and judicial reimbursement practices are instrumental in improving health outcomes.

Together, we have taken a step closer to realizing our vision of creating a world where children with pediatric feeding disorder thrive. Now that we have achieved a stand-alone diagnosis for PFD, the work continues on the rest of our advocacy agenda: early identification screening at well-child visits, best practices for care, PFD qualifying for early intervention, inclusive insurance coverage, federal funding for PFD research, and accredited PFD specialists.

We are grateful to you our community of families, healthcare professionals, and community members who are passionate about partnering with us to put PFD on the map. Additional special thanks go out to the Dorrance Family Foundation - our Visionary Power of a Name donor, Shannon Goldwater, Chris Linn, the PFD Alliance, the Family Advisory Council, the Vitalyst Health Foundation, ASHA, AOTA, NASPGHAN, ASPEN, the National Coalition for Infant Health, and the American Academy of Pediatrics for working with Dr. Praveen Goday and our Medical Director, Dr. Jaime Phalen to present the proposal to the CDC.

This is just the beginning. We need your support and partnership to ensure that this success continues. If you have ideas or connections in getting the word out and working together on our advocacy agenda, please reach out to us: programs@feedingmatters.org.

Click here to donate and learn more about the Power of a Name campaign.