This is the saga of Synagis.
Anyone with a preemie born before 32 weeks has probably heard about Synagis, a monthly vaccine given to small children at great risk from the side effects of RSV, a virus that causes cold symptoms. Nearly all toddlers by age 2 have been exposed to RSV, and most parents have never even heard of it because for healthy kids with strong lungs, it's more of an inconvenience than anything else. For preemies and small babies, it could mean lifelong respiratory challenges, like asthma, or it could even cause death. Tiny lungs simply cannot withstand the virus's attack and all the fluid and mucus that accumulate (see this post). Parents of preemies during RSV season (usually October through April in my area) are encouraged to wash hands, keep their children out of public spaces, and avoid sick people, but one of the best tools for protecting susceptible lungs is Synagis. It helps keep RSV in the nasal passages as a head cold, protecting the lungs. And it doesn't come cheap. It's needed every 28-30 days, and it generally costs $1000 for each vaccine. However, if you factor in one night's hospital stay or a lifetime of asthma medication, it's actually a bargain.
The problem with $1000 vaccines that must be given within a short time of delivery to a doctor's office is that pediatricians won't be liable for the vaccine and refuse to order it without prior approval from an insurance company--even if families are willing to pay for the vaccine themselves. The prior approval process usually begins in September or October and can drag into the holiday season, as insurance companies hedge their bets on whether or not a few $1000 are worth it. This process, in my experience, limits parental involvement but depends on parental involvement, and therein lies the fantastically frustrating contradiction that is the state of healthcare in the United States. Whatever your take on how to fix it, surely no one who has ever gone to battle with health insurance companies, doctors' offices, and pharmaceutical companies can be pleased. It can be a nightmare, and I am so grateful our experiences have been limited to the NICU and preemie care.
So, in August at a doctor's appointment, one of our pediatricians said she thought M would get Synagis this season with no problems based on her prematurity, weight, age, and other risk factors (like her exposure to her toddler brother and other babies in Mother's Morning Out). I was cautiously optimistic, because I had experienced the Synagis Approval Roller Coaster with J. In early October, our regular pediatrician put in another request to have Nurse S contact our insurance company, because we'd heard nothing from the first request in early September. That doctor also thought M would definitely receive it. The next week I called Nurse S to see how the process was going. She said that we'd received a denial. Of course, no one had informed me.
I was disappointed, because I cannot protect M the way I protected J. M is not our only child who can simply be sheltered at home all winter. A few days passed, and then it dawned on me that our state is our secondary provider for M's first year, because of her prematurity and birth weight. We declined that help with J, but we had a hiccup in our insurance during M's NICU stay and realized the value in having a back-up plan. So, I called the secondary. Of course, all infants are eligible for vaccines through their program--that was the answer I got. I tried to explain that this is no ordinary vaccine. I can't just go to a clinic to get it, and prior approval is required before a doctor's office will even order it. Finally, I spoke with someone who assured me that if the primary denied it, the secondary would cover it.
I didn't feel very assured.
So, I called Nurse S and told her. She said she'd follow up with them. Days passed.
I received a denial letter from the secondary. It said that we could have an appeal, so I called and said we wanted to appeal the decision.
I called Nurse S and told her, and then I called our primary to verify that they had denied M too. They said no decision had been made. What?? Apparently, the first request had come before the technical start to RSV season, so our doctor's office had to repeat their request. So, I called Nurse S back and told her that news. Clearly, she already knew that the primary was still considering her second request, and by her tone, I should have known too. Nurse S deals with very frustrating situations, so I try to understand that her tone has nothing to do with my stupidity. But, sometimes I can't help but wonder if the doctors and nurses at our otherwise wonderful pediatrician's office really understand. What would you do if you were protecting your baby's health? Really, what would you do?
So, I waited. We were in RSV season by this point. M had been sick for the better part of a month, and my husband and I decided that M needed to have a break from the germs at Mother's Morning Out. I was envisioning how her winter would go with drooling, runny-nosed babies. Of course she'd get exposed to RSV!
Then, I got a letter from our secondary. I was excited, but it was just confirmation that they were appealing the denial.
Another week passed. In the meantime, we received notification from our secondary that we had three weeks to gather all of our financial information--and I mean ALL--for a review over whether M will receive secondary insurance after her first birthday. If we didn't submit the paperwork by the end of the month, her secondary insurance would automatically terminate. I felt defeated. I'm quite sure she won't be eligible, but on the off-chance that our secondary insurance gave her a few Synagis shots before her eligibility expired, we decided we had to comply. So, my husband spent much of his free time during one week on that task.
Then, I got another letter from our secondary. I couldn't believe it said that we'd won our appeal. They were approving Synagis!
Except when I called Nurse S, she said she'd heard nothing. She called the secondary. She called me back to say that yes, M was approved, but only if the primary issued a denial and informed the secondary on the reason for the denial. Okay, awesome. But, how do I do that? Nurse S and our pediatrician called the primary. I was miffed because the last I'd heard from the primary was that they were considering M's case. I had no idea they'd made a decision and they'd failed to directly notify the secondary. Nurse S called back to say that the primary was in the appeal phase on their denial but that our doctor had stressed that since it's now November, a month into RSV season, and our secondary has already approved Synagis for M, it would be fantastic if they'd finish their appeal and notify our secondary.
Another week passed.
Yesterday, Nurse S called and left a voicemail asking me to call the office. I prepared myself for the inevitable no--no vaccine for whatever convoluted reason. I'd already accepted it when Nurse S said, "Synagis is here!" Wait, what? I know I should have asked more questions like "did the primary finally officially deny her?" but instead I just made the doctor's appointment for the first available time. Better get the vaccine before someone changes his or her mind!
Nurse S helped give M the vaccine. I looked at her, really looked at her in her eyes, and said, "Thank you. Thank you so much. I know this was a pain, but I really appreciate everything you've done." And she smiled, shrugged her shoulders, and said, "We have to keep her healthy."
When I wonder if people like Nurse S understand, really understand, it's a moot point. Maybe she does and maybe she doesn't. But, even if she doesn't, she understands enough. Because in the aftermath of a two-month insurance battle, just one of many I'm sure she fights on a daily basis, her answer is exactly what I would say.
A shrug of my shoulders as if all of this were just child's play. We won after all. And we have to keep M healthy.