Insurance coverage limited for life-saving drug

RSV prevention shots not covered in older children

Kylie Pelleymounter.
Kylie Pelleymounter. (Josh Pelleymounter)

ORLANDO, Fla. – Nemours children's hospital at Lake Nona has only been open a little over a month, but already the patient rooms are filling up.

The occupants share something in common: over half of them are being treated for respiratory synctinal virus, or RSV.

Three-year-old Kylie Pelleymounter is one of them, although Local 6 cameras were not allowed inside her room to meet her. 

"She's on what they call contact isolation, so everyone that comes in right now has to gown up and glove up so they won't spread it," said her father, Josh. 

Kylie was born premature and Pelleymounter said since she was at risk for an RSV infection they were utilizing a preventative medication called Synagis.

However, when the todller passed her second birthday Blue Cross Blue Shield stopped covering the medication.

"We've sent doctors notes and we send everything in and it's just one of theose things that gets denied," said Pelleymounter.

According to Dr. Livingston, there is no antibiotic or anti-RSV drug onces the virus is contracted so prevention is very important.

RSV starts with symptoms like a common cold but turns into a very aggressive problem that causes inflammation and swelling in the chest, according to Dr. Floyd Livingston.

Livingston is a pediatric pulmonary and sleep specialist for Nemours who treats more RSV infections this time of year than anything else.

According to the Centers for Disease Control, RSV effects children at epidemic levels during  the fall and winter months.

Due to the moist climate in the state of Florida, RSV tends to have a longer season here.

The CDC said almost all children will contract the virus prior to 2 years of age, and it is the leading cause of infant hospitalization.

Children who are born premature or with immune deficiencies are most at risk.  It's why parents like Rosie Moore take advantage of Synagis while they can.

"I did the research on RSV and the vaccinations far outweighed the risk," said Moore, whose son Caleb spent nearly 5 months in a neo-natal intensive care unit at Florida Hospital.

Now 3 year's old, he is also past the age criteria for Aetna insurance to cover the shots.

Aetna did not respond to requests for comment. 

We reached out to Blue Cross Blue Shield, Aetna, Cigna, United Healthcare and Humana to find out each company's policy on covering the drug synagis.

Aetna did not respond.

The other companies all stood by the same policy:  they follow the American Academy of Pediatrics guidlines for RSV which indicates that Synagis is not effective in children over the age of two.

The American Academy of Pediatrics was not immediately available for comment.

The companies that responded said parents are able to appeal the coverage decision, however none of them could say for certain that they've ever footed a bill for Synagis in a child over the age of two.

Blue Cross Blue Shield deferred our questions to represntatives from Florida Blue, the companies Florida division.

A Florida Blue spokesperson would not comment specifically on Kylie Pelleymounter.

"I conferred with the Care team, and given restraints due to HIPPA regulations, we cannot comment specifically on this individual. Keep in mind that even though the patient lives in Florida, that does not mean that he/she is covered by Florida Blue. The coverage decisions could be made by another Blue Cross and Blue Shield plans outside of the state," said Florida Blue Senior Communications Consultant Paul Kluding in an email.

Both Moore and Pelleymounter said parents of premies are very concerned about this issue and our networking together through internet blogs to try to get it covered past age two.

"I have preemie moms across the country through my network that their insurance did not cover it and their child did not receive it and ended up with RSV," said Moore, who thinks it should be covered at least through age 4 to get them through their first year of preschool.

Pelleymounter said he knows parents who are afraid to even let their children around other kids who may have been at daycare.   He and his wife enforce constant hand washing and clothes changes throughout the day to prevent the spread of the disease.

Dr. Livingston said Synagis is not something a normal healthy child would need although everyone is at risk for RSV.  In children and adults with better immune systems it will appear as a very brassy lingering cough.

Livingston said if your child gets a cough of this nature with perpetual chest-pulling you should consult a doctor.