Tuesday, July 15, 2014

Sound the Alarms -- Synagis May Become Even More Limited

As a mother of a micro-preemie and an active member of the preemie parent community, I am seriously concerned about possible changes to the American Academy of Pediatrics (AAP) guidelines concerning the use of Palivizumab (Synagis) for high-risk infants and children. Specifically, I am concerned that revisions to the AAP guidelines may negatively impact patient access to Synagis, resulting in longer hospital stays and higher medical costs.

Respiratory Syncytial Virus (RSV) is the leading cause of bronchiolitis and pneumonia in U.S. infants under the age of one. Infants born prematurely, and infants and children with chronic lung and heart disease are at higher risk for severe RSV infection.  Every year, approximately 75,000 to 125,000 children under the age of five are hospitalized for RSV.  Although no vaccine is currently available to prevent RSV, a monoclonal antibody -- Synagis --can help reduce the severity of the illness.  

This morning, I was alarmed to read a full-page ad, sponsored by MedImmune (the manufacturer of Synagis), on page A5 of The Washington Post. The advertisement indicates that an AAP Committee will issue modified guidelines on July 28 that will severely limit the population of babies it believes should obtain the medication. This comes at a time when many parents are already working with pediatricians to place orders for Synagis for the upcoming RSV season.

My micro-preemie, Emily, was born in January 2013 at 28 weeks gestation, weighing one pound, eight ounces. She received Synagis shots in the Neonatal Intensive Care Unit and from her pediatrician following discharge.  She also received Synagis shots the following RSV season (2013-2014). Although the shots were very costly, I am certain that the shots cost far less than a hospital inpatient stay. 

We spent much of the RSV season home-bound in order to protect Emily from situations in which the virus could spread. We did not attend many events during RSV season and did not take our baby to crowded places, such as shopping malls, restaurants, or the grocery store.  We refrained from "passing" Emily around the room and we asked visitors to do the following:

(1)  When you arrive and throughout your visit, please wash your hands thoroughly and use hand sanitizer, especially before touching the baby.

(2)  If it is possible, get a flu shot and a Tdap vaccine if you have not already done so.

(3)  Refrain from coming over if you are sick and have not been symptom free for at least five days, if you live with someone who is sick, or if you have been in close contact with someone who is sick.

(4)  If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting as preemies are very sensitive to smoke.  In addition, most RSV resources recommend against passive smoke exposure. 

(5). If you are parents to a baby or a toddler, please refrain from bringing them to our house during RSV season.

My husband and I have already started discussing Synagis eligibility with our pediatrician for the 2014-2015 season in the hope that our low-weight toddler, who has been threatened with a feeding tube, will once again qualify for the shots. 

We are grateful to MedImmune for creating Synagis for premature babies and other children with special medical needs. We feel so relieved to know that if Emily catches RSV, her hospital stay may be reduced as a result of the shots. Emily already endured a 67-day Neonatal Intensive Care Unit stay and doesn't need to spend time in the Pediatric Intensive Care Unit.

It is my hope that the AAP's revised guidelines will be in the best interest of preemies and will encourage and allow high-risk infants and children with access to this medication. I plan to contact the AAP Board of Directors with my views.  It will be interesting to see how the revised guidelines impact patient care; if all Medicaid plans follow the recommendations; and whether the guidelines truly represent the views of the AAP membership.  

We've done a lot to shelter Emily from germs and illness and were home bound for most of the RSV season. Synagis provided us with a lot of peace of mind. What have your experiences with Synagis been like this year?  I'd love to hear your personal stories, as well as your views concerning potential changes to AAP's policies concerning the criteria needed to require Synagis. And, if you haven't already, please consider entering to win an autographed copy of "Bentley's Preemie Blessing."


  1. As a nurse, I have worked with many babies who had RSV. It is sad to see them so sick and having to deep suction them every 20-30 minutes. It is not fun at all! I am glad to hear that there is a shot, Synagis, that is beneficial in preventing RSV. I hope Emily is able to get her Synagis shot!

  2. I applaud you for not only being vigilant in the care surrounding your daughter Emily but also in your efforts to contact AAP. PreemieWorld has a petition at http://bit.ly/PreemiePetition and we are already at 6k in signers. Please feel free to sign. And contact me should you have any trouble with the Synagis pre-qualification. I have some suggestions.

  3. My son was born at 31 weeks and is now 17 months. He endured gram negative NEC at 5 weeks and spent 67 days in the Nicu as well. He received Synagis last season and when our insurance switched in January his February injection arrived 12 days late (despite the barage of calls). He was diagnosed with RSV the following day after receiving the late injection and spent 4 nights in the hospital. He is significantly at risk and has a very compromised immune system. Despite all our precautions we are in touch with our Dr almost weekly. We are now being told that due to the new recommendations he does not qualify. The system is significantly flawed. In addition, we were floored to learn the discrepancy in price that the insurance companies are being charged. Our prior company was billed $2400 per injection, while our current insurance company was billed roughly $13,500 per injection.