Ben $0, Insurance Company $13, 800

RSV is a very scary virus for premature babies. Ben's doctors and nurses began warning us about the danger from the first few days of Ben's life. We learned that most kids will get RSV before the age of two. For most kids, there isn't much difference between the virus and a cold. In fact, most parents don't realize their kids even caught the virus.

However, for premies, it can be a whole different ballgame. Premies with a birth weight under 2500 grams have a 5 times more likely chance of dying from RSV than full-term babies. Ben weighed 1620 grams at birth. We were warned to keep Ben out of daycare for his first two years, away from other kids who are in daycare, and to stay out of crowded places like malls, grocery stores, and even churches.

There is a drug to help prevent/lessen the impact of RSV. The drug is called Synagis. And, in a classic pro-capitalism, supply and demand situation --> the drug costs a fortune. For Ben, we were told it will cost $2300 per month and he would need shots for 6 months. That's $13,800. $13,800 is more than the average cost of 1 year at a public college/university, including room and board !

We were also told, much to our shock and dismay, that our insurance company Horizon Blue Cross and Blue Shield of NJ was refusing to pay for the drug. They claimed that Ben did not fit their guidelines for providing the drug. Their guidelines "are based closely on the American Academy of Pediatrics guidelines" (but notice the word closely as opposed to actually based on the AAP guidelines). Horizon's guidelines stated that if a child was born at 31 weeks, he had to be 6 months or younger when RSV season started. Horizon defined RSV season as October 1st - April 31st. Thus, Ben was 6 months and 8 days at the start of the season. Yes, that's right. Ben missed their cut-off by 8 lousy days.

So, we appealed the decision. Our appeal was denied. So we appealed again. This time to the "Members Appeal Committee". Ben's doctors wrote letters. We did TONS of research and discovered interesting facts like RSV is in NJ in September. Also that NJ is not mandated to collect RSV data so, no one really knows how many kids are getting sick with the virus. I spoke to the March of Dimes, The Center for Disease Control, and various health department officials in NJ.

We also learned that the drug company, MedImmune, doesn't offer any kind of assistance if your insurance company denies your claim. They will help you if your co-pay is excessively high, but not if you have to pay out of pocket. They are very nice, and they "wish there was something they could do to hel", but no, they can't lower the price of the drug.

The Members Appeal Committee (made up of 3 doctors and 3 "Member Advocates" all of whom are compensated by Horizon) denied giving Ben the medicine. Not only did they deny it, they were downright rude and argumentative about it.

Basically, Horizon decided that it would be cheaper for them if Ben got sick and ended up in the hospital, than paying for him to get the medicine.

Clearly this would not do. NJ has a procedure when you have run out of appeals with your insurance company. You fill out a form, and send the form, $25,and all of the paperwork to the Department of Banking and Insurance. Then, they have an outside medical examiner review the case and make a decision. Their decision is BINDING.

We called our State Senator whose assistant offered to submit our application for us. So we sent everything to her and hoped for the best. Ben's Great Aunt June wrote a letter to Governor Corzine explaining the situation.

Low and behold, last week, someone from the Governor's office called. They forwarded the letter to the Department of Banking and Insurance, who couldn't find our application. I called the state senator's office who then called the Department and they figured out where our application was hiding.

Monday at 5pm I got a call from Permidion. The woman on the other end of the line announced that "They handled our son's appeal." I was SO confused and asked if she worked for Horizon. "No, we are hired by the state. We reviewed your son's case and are OVERTURNING the insurance company's denial. And this decision is binding."

I was speechless. And filled with joy. And speechless.

When we received the letter there were three reasons that they overturned the denial (I am spelling it all out for anyone else who has to fight with their stupid insurance company over this)
1. Ben weighed under 2500 grams at birth
2. There is evidence of RSV in NJ in September and Ben was 6 months in September
3. Horizon's own definition of "medical necessity" was met by Ben's doctors being qualified and reasonable physicians. Therefore, because Ben's doctor's said it's necessary, it is.

HA HA HA HA HA.

So now Horizon has to pay for the drug. We still expected a huge co-pay, but were informed by the pharmacy that Horizon is paying 100%.

Our doctor's office told their Synagis drug rep who said that they've never had a family take it to the state level before.

We are so happy that Ben will have some added protection this winter.

We are so thankful for everyone who helped us: Aunt June, Governor Corzine, Charlotte in Senator Sweeney's office, Ben's amazing doctors.