As back-to-school season is upon us, it’s the time of year when viruses begin to run rampant through daycares and schools. While some viruses are not as harmful, there are some, such as RSV, that can be deadly to babies who are born prematurely.
Respiratory Syncytial Virus, commonly known as RSV, is the leading cause of hospitalization for babies during the first year of life. Nearly 100 percent of babies contract this seasonal virus by the age of 2, but premature babies are twice as likely to become hospitalized from the virus as babies born full term.
Recently, the Committee for Infectious Diseases (COID) with in the American Academy of Pediatrics (AAP) issued new guidance that dramatically reduces the eligibility for a preventative therapy often given to babies at a higher-risk for RSV.
Earlier this month, I spoke with neonatologist Dr. Mitchell Goldstein and parent advocate Vanessa Moore about RSV and these guideline changes. Read my interview to learn more about RSV and the change in guidelines.
Can you tell us a bit more about RSV and key facts that parents need to know?
Dr. Goldstein: RSV is one the seasonal viruses. It’s normally active between November and May. Most babies have RSV by the time they are 2 years of age. In most babies and the adult and older pediatric population, it can manifest as congestion, runny nose, cough, maybe a low-grade fever; usually something that’s not that serious, something that most people will get over in the course of a week or two.
However, in babies that are born prematurely, it can mean a hospitalization, breathing treatments, the need for oxygen therapy. It can also mean the need for ventilation or a breathing machine. In fact, in certain cases, in really serious RSV, it can actually lead to death.
What are some ways to help prevent RSV?
Dr. Goldstein: There are a number of things that can be done to prevent RSV, importantly, you can keep babies who are at risk away from people who are sick, even if they just have a little bit of a cough or just a little bit of a stuffy nose, especially during the season they really are at risk.
However, there is a preventative medicine that is quite successful, and that is called Synagis. Synagis is a medication that is given monthly to babies that are born prematurely during the season between November and May.
And it’s because I’m very passionate about that that I’m here today on behalf of MedImmune. This medication, which has been very effecting and has a long safety record of keeping our most fragile, our most vulnerable preterm babies out of the hospital and without having to suffer the most serious complications, is being restricted. The AAP, in its latest guideline, has restricted availability of the medication to babies that are born before 29 weeks gestation.
In terms of what this translates to, we’re talking about 75 percent of babies who would otherwise be eligible for this, who are no longer are. In raw numbers,140,000 babies nationally annually will no longer be eligible for this therapy. It’s a shocker.
What’s the reason for limiting it?
Dr. Goldstein: Well, it’s hard to figure out. When you look at it from the standpoint of its effectiveness and the side effects, there really aren’t a lot of downsides to the administration. Yes, it’s a relatively costly item, but when you compare it to the cost of hospitalization and lost work hours for parents, and follow-up care—again, many of these babies will go onto have reactive airway disease and asthma—it’s simply just doesn’t make sense. There is an FDA indication for this particular medication, but that’s not something that is respected by the latest guidelines.
What impact do you see for babies who are impacted by these new guidelines?
Dr. Goldstein: It’s a paradox. When you look at the AAP, they are supposed to be safeguarding our babies. They are supposed to be making recommendations for therapies that are effective and produce good results, and this is very contrary to what should be going on. So, I see risks for increased hospitalization, increased problems in this particular group of babies. And I’m very, very concerned about it.
Vanessa, you’ve had a personal experience with RSV. Can you tell us your story?
Moore: My youngest daughter, Sydney, contracted RSV four times over the course of her first year. She was in the hospital all four times. The second time is when her pediatrician explained to us about this preventative shot that’s available to help lower the risk of her re-contracting it. We tried through our insurance to get it approved, which unfortunately they didn’t. Actually, they did quote the guidelines in the letter of denial we got, so even though it isn’t a law or anything like that, the insurance companies look to AAP guidelines as a guideline of who to approve and who not to approve.
As a result, she was in the hospital two more times after and asthma, I believe, because of the RSV the first year.
What can we do to raise our concerns over these guidance changes and help protect high-risk babies?
Dr. Goldstein: One of the things that the AAP will tell you is that their guidelines are not binding, that physicians can order the medication if they feel they have a baby who falls within the indications, but the insurers look to the AAP for guidance.
What I encourage parents to do is to talk to their provider to see if their baby is eligible for these immunizations that will help prevent a lot of the complications, and if not, or if the guidelines seem to stand in the way, to encourage their provider to prescribe this medication through the indication. Furthermore, there are other things that can be done. If you know your AAP representative, talk to the AAP representative and let them know how dissatisfied you are with the changes in guidelines and tell them to do something about it.
Finally, there is a website, rsvfacts.com, where people can go for more information.
courtesy of RSVFacts.com
Mitchell Goldstein, MD, FAAP
Dr. Mitchell Goldstein is Medical Director Emeritus and Fellowship Coordinator of the Neonatal ICU in the Family Birth & Newborn Center. He completed his undergraduate and medical school in the University of Miami’s six-year Honors Medical Program on the Dean’s List and Phi Beta Kappa. He completed his Pediatrics residency at UCLA and Neonatology fellowship at UC Irvine. He is on the editorial board of the Journal of Perinatology. He is past president of the Perinatal Advisory Council: Leadership, Advocacy & Consultation (PAC-LAC), is the editor of PAC-LAC’s Guidelines of Care, and is PAC-LAC’s CME Research Chairman. He is past president of the National Perinatal Association. He is on the board of the American Academy of Pediatrics Perinatal Section. He is an Associate Professor in Pediatrics at Loma Linda University Medical Center. He is Board Certified in both Pediatrics and Neonatal-Perinatal Medicine, and is a Fellow of the American Academy of Pediatrics. He is fluent in Spanish.
Vanessa Moore
Vanessa Moore’s daughter, Sydney, was born at 34 weeks gestational age during the peak of RSV season. Despite being born 6 weeks before term, Sydney’s doctors deemed her healthy and didn’t discuss the option of preventive treatment for RSV. Vanessa took every precaution to keep her daughter safe during the same RSV season—constantly sanitizing hands and toys, avoiding crowds and even skipping family gatherings—but Sydney still contracted the highly contagious virus and was hospitalized for nearly a week.
After it became clear that Sydney would benefit from added protection, her doctor’s prescribed the preventive therapy but she was quickly denied coverage. Over the course of several months, Vanessa and Sydney’s doctors pleaded with their insurance company to obtain coverage, but they were denied time and time again. Meanwhile, Sydney had three more RSV-related hospitalizations that year. Vanessa lives with her husband and three children in Virginia.
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Our daughter was a micropreemie born at 27 weeks 10 years ago. She got Synagis shots her first winter but the next year when her pediatrician said she needed them again our insurance denied us. We sent several letters as did her doctor but they refused to approve it. I hate to think of this happening on a large scale. Thankfully our daughter remained healthy that winter and is now a healthy 10 year old.
Wow. I’m so glad she’s healthy. It’s crazy and sad to see that this is being denied on a large scale.