National Alliance of Preemie Parents Advocacy on RSV Prophylaxis

PreemieWorld was honored to be a part of the ongoing efforts relating to advocacy on proper dosing guidelines for RSV Prophylaxis for all premature babies, especially 32-35 weekers.

Below is a letter that the National Alliance of Preemie Parents (NAPP) put together and sent to the heads of the American Academy of Pediatrics (AAP) last month:

National Alliance of Preemie Parents
P.O. Box 6303 • Athens, GA • 30604 • 888.963.7673

18 May 2011

Marion Burton, MD FAAP
American Academy of Pediatrics
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1019

Dear Dr. Burton,

As the umbrella of support organizations that represent over 25,000 parents of premature babies, we are writing to request that you consider the “parent voice” when writing your RedBook guidelines for 2012. Our families have been on the receiving end of AAP’s rewritten guidelines for RSV Prophylaxis and we have had to bear the brunt of the changes made.

We represent families nationwide from the NICU and post-NICU. In a nutshell, our community has had its share of families who have been hit hard by RSV due to not receiving the RSV Prophylaxis. Some of our families have had deaths due to RSV. Those that were “lucky” ended up with long hospitalizations, mounting medical bills, lost income from work time off and then the barrage of therapies and follow-ups needed to work through the residual issues medically and developmentally for weeks, years and even a lifetime to come.

We are stunned that RSV Prophylaxis is not being prescribed to 32-35 weekers. With every neonatal organization in our country concerned about the issues relating to late preterm birth, we are shocked that RSV Prophylaxis is being cut from the treatment plan of these babies. We just spent tens of thousands, and in some cases, millions of dollars to save these children. If cost is a concern, then we have to re-think the math on this one. It just does not add up.

We are requesting proper research into this matter, effective immediately. The CDC recently broke up its ACIP group on RSV with no apparent reason as to why, despite nationally certified professional groups testifying on this issue and with the National Perinatal Association providing an extensive paper on this matter in 2010. This should not be an arbitrary decision by a closed-door meeting among a small group of people. We are formally requesting a clinically-based research study to properly handle this matter and give the families and their babies real answers without prejudice.

We look forward to hearing from you regarding the plan of action for providing American families with proper and research-based guidance regarding RSV Prophylaxis.

Richard & Keira Sorrells, Executive Directors
Administrators, National Alliance of Preemie Parents
Zoe Rose Memorial Foundation

Kelly Fraasch, Founder & Executive Director
Parent Resource Network

Kelli D. Kelley, Founder & executive Director
Hand to Hold

Susan & Bob Selby, Founder/Executive Director
Holding Tiny Hands Foundation

Chris & Becky Dittman, Executive Directors
Zoe’s New Beginnings

Deb Discenza, Co-Founder

Kristie McNealy, MD
Women’s & Children’s Health Blogger & Advocate

Catherine & James Sylvester
NICU Parent Support Coordinator
Common Bonds NICU Parent Support
Logan Regional Hospital

Becky Hatfield
Parent Support Coordinator
Parent to Parent
University of Utah Hospital
500-600 families per year

Liz McCarthy

Cami Marsh
Parent Support Coordinator
Intermountain Medical/Common bond