Our Synagis was denied, should we pay out of pocket?

Synagis is the monthly injection of antibodies to bolster the immune system against infection with RSV, a virus that can cause significant inflammation of the airways, especially for preemies and children with congenital heart defects. Since the guidelines for Synagis were changed by the American Academy of Pediatric (click here for the recommendations) many more preemies have been denied the medication.

How to handle an appeal for Synagis has been addressed in a couple of earlier posts (How to write a Synagis appeal letter Part 1 and Part 2), with some excellent commentary on Part 2 by an anonymous insurance insider. However, many parents have still been denied and are left wondering, should I pay for the Synagis myself?

To answer this question, I turned to Dr. Nicholas Bennett MA(Cantab), PHD, MB/BCHir, a fellow in pediatric infectious diseases at SUNY Upstate Medical University. Dr. Bennett’s first point was to make sure you find out why the Synagis was denied. You want to make sure it was because your baby is truly ineligible, and not because the birthdate or some other piece of information was entered incorrectly.

Dr. Bennett suggests that your baby’s doctor call one of the medical directors of the insurance company, because a personal conversation can go a long way. Often there are individual nuances about your baby’s health that can really only be explained person to person. Dr. Bennet says that he has had success with “other medications after getting through to medical directors and making a case for my patients, even after several denials.” I have also found this to be true, if I can make a strong enough case. Dr. Bennett suggests doctors think about all the reasons a particular baby is at high risk for RSV, not just the fact they are a preemie, and use that information. A pediatric pulmonologist (lung specialist) or infectious diseases expert may be helpful in providing more ammunition. Stressing that an individual baby is at high risk of hospitalization can help, because ultimately one admission is more expensive than 5 months of Synagis.

If after the original application, 2 appeals, and a personal call to the medical director your baby is still denied, then Dr. Bennett says it might be that your baby “truly doesn’t have a strong reason to get Synagis, in which case then by definition they are at a lower risk of getting sick.” And if they are at lower risk, then you have less to be worried about.

If your doctor can’t convince the medical director that your baby should have Synagis, then it might be worth a second opinion from a pulmonologist or an infectious diseases expert (if that hasn’t happened) before you think about paying out of pocket, because a season of Synagis is about $5000. If this expert really feels your baby should have Synagis and you have been denied, file a complaint with your State Insurance Commissioner and also talk with your human resources person if your insurance is through work, because they need to know what is happening (that has personally worked for me several times when I lived in Colorado). For example, there is no reason a preemie with chronic lung disease who is less than 2 years of age should be denied.

Keep in mind that hand washing/using alcohol sanitizer and staying away from other kids is the best form of prevention and that daycare = RSV. Synagis isn’t a get-out-of-jail-free card for RSV, it just reduces the risk your baby will be sick enough to need hospitalization (but it certainly doesn’t eliminate that risk).

So before you think about paying out of pocket, ask for an opinion from a specialist. Consider all the other steps you can take to protect your baby. And finally, here is a study that might help put your mind at rest. Preemies born less than 32 weeks were followed for 30 months, some received Synagis and some did not. Overall, the rate of hospitalization was the same for the 2 groups; however, the risk of hospitalization was 6 times higher for a preemie less than 6 months of age who did not receive Synagis compared with those babies who did receive the medication (supporting the American Academy of Pediatrics recommendations for Synagis for babies less than 32 weeks).

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