RSV is a dreaded infection for many preemie parents, myself included. After 2 full winters of Synagis and what can only be described as an obsession with hand hygiene and limiting contact, even with friends and family, we managed to make it through the first 2 winters unscathed. At the age of 2 1/2 we thought the boys could try Montessori. Within a week Oliver was in the ICU with RSV. We again limited contact with children and managed to stay RSV-free until he was 6 1/2, when he had RSV again and spent 4 days in the hospital. Oliver has bronchopulmonary dysplasia and congenital heart disease, so he has the 2 major risk factors.
So RSV prevention is clearly near and dear to me (there are times I wonder if Oliver should still get Synagis at the age of 7. I spoke to a big time pediatric infectious diseases who said he would support it, but that’s for another blog). As a doctor it was relatively easy for me to navigate the pre-approval waters because I knew what to say and how to say it (my big claim to fame is that I got an off-label, compounded drug approved for my son Victor for 10 years!). So here are some helpful hints to getting Synagis approved for your baby when you have commercial insurance:
If you have been denied, follow the guidelines for appealing EXACTLY. Failure to do so can affect your appeal. Make sure you pay very close attention to any deadlines, typically appeals must be filed within 30 days, but it could vary depending on your insurance.
At the top of the letter, right before you start with the salutation, put your baby’s full name, date of birth, and their insurance number.
When you write the appeal letter stick with the facts. You can add information, like how long they spent in the NICU, but at the end of the day, the most important information is gestational age and if they have bronchopulmonary dysplasia. If you can, enclose a letter from your doctor stating why he/she is recommending Synagis.
Look up the name of your State Insurance Commissioner and cc them at the bottom of the letter. The link takes you to a handy site that lets you look up the name and address by state. This is very important, because insurance companies HATE to have the Insurance Commissioner involved. This can lead to reviews etc. It also tells the insurance company that you know what you are talking about and mean business. Make sure that you mail a copy of the letter to the State Insurance Commissioner. There is one big caveat here…if your insurance is self-funded, it is not answerable to the Insurance Commissioner (ask your benefits person at work if your plan is self-funded or not). It is always a good idea to send the letters certified with return receipt for your records. You can also fax if the insurance company says that is acceptable, just make sure you keep the confirmation page so you have proof the fax was received.
Does your baby meet the criteria outlined by the American Academy of Pediatrics? I am not saying I necessarily agree with the guidelines, but this is a close to a chip shot as it can be with approval. If so, state specifically how your baby meets the criteria. A good example would be something like this:
Re: John Doe
Date of birth: 01/01/09
Member ID number: 01010101010
I am writing to you regarding your recent denial for my son, John Doe. On October 29, 2010 his application for Synagis therapy to prevent RSV was denied. Please accept this letter as an official appeal of your denial. I respectfully submit that John Does does in fact meet the recommended guidelines for Synagis as laid out in the American Academy of Pediatrics 2009 Redbook. He was born at 28 weeks gestation, is on regular nebulizers’s for his lung disease of prematurity, and is younger than 24 months of age at the start of RSV season.
We expect to begin Synagis promptly as the CDC has already reported an increase in RSV activity. I expect a response within 5 business days.
cc: Ms. Jason Doe, State Insurance Commissioner.
What if your child does not meet the new AAP guidelines? Some examples might be:
Born at 29 weeks and is 9 months old at the start of RSV season or born at 33 weeks, has risk factors for RSV, and will be four months old at the start of RSV season or born at 34 weeks and has no risk factors for RSV.
This letter should cover all of the above. Just make sure to substitute the right gestational age etc. Make sure to include the reason for denial in the letter. If he is on nebulizers for lung disease or has the diagnosis of bronchopulmonary dysplasia add that right after gestational age in the first line (see below).
I am writing to you regarding your recent denial for RSV immunoprophylaxis with Synagis for my son, John Doe, who was born at 33 weeks gestation. Please accept this letter as an official appeal of your denial.
On October 29, 2010 his application for Synagis therapy to prevent RSV was denied because he was “born at 33 weeks gestation and will be four months old at the start of RSV season.” However, there is ample evidence in the medical literature that all premature infants 36 weeks or less are at increased risk of severe RSV disease and have a higher risk of both hospitalization and admission to the intensive care unit in the first year of life.
According to an article by Boyce TG et. al. (from the Mayo Clinic), published in the Journal of Pediatrics in 2000, all premature infants born at 36 weeks or less are at increased risk for hospitalization due to RSV in the first year of life. The risk of hospitalization is 57/1,000 for babies born at 33 to < 36 weeks, which is almost double the rate for children born at term (30/1,000). The two year prospective PICNIC study (Wang EL, et. al. Journal of Pediatrics 1995) also confirms that relative to infants born at term, in the first year of life, babies born at 36 weeks or less are at increased risk for hospitalization related to RSV and premature babies born between between 33 and 36 weeks are two and half times more likely to need mechanical ventilation compared with a baby born at term.
Therefore, my son’s age at the start of RSV season is immaterial as the medical evidence is overwhelming that all premature infants are at increased risk for severe RSV disease in their first year of life. To deny my son Synagis is to expose him to an increased risk of prolonged hospitalization and the need for an admission to the intensive care unit. The practice of limiting Synagis to the first 90 days of life for children born between 33 and 36 weeks is completely untested.
RSV season has started so time is of the essence. I expect an approval letter within 5 business days or I will begin action with the Insurance Commissioner.
cc: Ms. Jason Doe, State Insurance Commissioner.
If your baby was less than 33 weeks at birth substitute The risk of hospitalization is 66/1,000 for babies born between 29 and <33 weeks, which is double the rate for children born at term (30/1,000)” for the first bolded line and “premature babies born before 33 weeks are more than seven times more likely to need mechanical ventilation than a baby born at term” for the second bolded line. For the third bolded line substitute, “The practice of limiting Synagis to the first 6 months of life for children between 29 and < 33 weeks is completely untested”
What if your baby is approved for Synagis but only for 1 to 3 shots or you are trying to get Synagis approved for a second season? What if you are have Medicaid? What if you live in Florida? I’ll tackle that in part two tomorrow.
Hope this helps. Please give me feedback and let me know about your Synagis experience.
Remember, this blog is not direct medical advice.