12 Tips For Getting Synagis Injections Approved

My most recent article on Preemie Babies 101 posted yesterday. Here’s an excerpt:

©tiverylucky/freedigitalphotos.net

©tiverylucky/freedigitalphotos.net

Getting Synagis injections approved by insurance companies can be cumbersome, but for me the threat of my babies catching RSV was always worse. So, I stumbled my way through several Synagis approval scenarios. Hopefully, these tips can make your Synagis quest a little easier.

But first, it’s important to understand that there are general guidelines that exist to determine who gets Synagis injections. In the past, babies with a history of prematurity, lung or heart conditions, or extensive hospitalizations who were less than 6 months of age at the beginning of RSV season have been covered. Preemies born at 28 weeks or earlier who were less than one year old often qualified. Preemies or other babies with significant health concerns who were in high-risk situations, such as full-time daycare, exposure to other young children, or being a multiple, sometimes received Synagis injections up to age 2. At the time of this writing, changes to the guidelines are being discussed, so follow up with your pediatrician about whether your child qualifies.

  • Your pediatrician should be supportive of your quest to get Synagis. At a minimum, he or she should be willing to discuss Synagis as an option and why your child may or may not qualify. You are fighting an uphill battle if you have to fight your pediatrician in addition to the insurance company. If your doctor is unfamiliar with Synagis, that person might not be the best fit for a preemie who needs many special considerations in the first years.

Please click here to read more.

Waiting For the Shoe To Drop

A month ago, J was as sick as he’s ever been since his discharge from the NICU. For a 26-weeker, he has always been amazingly healthy, even in the NICU. We have had plenty of frustrations and roadblocks, but he has never been truly ill.

In fact, he went an entire year without a sick visit to his pediatrician.

But, this year he had one cold after another cold after an ear infection. All winter long. I guess I shouldn’t be surprised. He attends school for twice as many hours a week as he did last winter, and now he has a younger sister who shares germs with him. The cold and flu season was also much longer because of the colder winter.

So, it was nothing new to have two kids with ear infections in late March. I took them to the doctor on a Tuesday afternoon, and both kids needed antibiotics. M started looking better almost immediately, but J became listless on Wednesday, which has never happened before. He rarely runs a fever, he has never lost his appetite, and sitting on the couch all day is the exact opposite of the kind of child he is. But, I really became alarmed on Wednesday night when he had trouble sleeping, so on Thursday morning, I took him back to the doctor. I was positive that something was wrong.

And I was right.

Apparently, the antibiotic was working on the bacteria in his ears, which looked much better, but while his body was busy with that infection, another bacteria attacked his lungs. Within 36 hours of seeing a doctor for ear infections, he had developed a completely separate case of pneumonia.

So, the doctor gave him a shot of Rocephin, a high-powered injectable antibiotic, and she changed his prescription to a stronger oral antibiotic.

But, he didn’t get better. In fact, all of Thursday he continued to go downhill. I called Friday morning and made the first available doctor’s appointment, which, of course because I was in a panic, was at 10:45 a.m. J’s fever was nearly uncontrollable, and his skin was so pale it was nearly translucent. His lips weren’t blue–a sign of danger I learned in the NICU–but he was wheezing. So, I called the doctor’s office back and told them that I was bringing him right then.

The doctor saw him immediately, and she gave him another Rocephin injection, a dose of steroids, and two breathing treatments.

That night, I began to see him turning a corner.

I learned at a follow-up appointment the next week that his case of pneumonia was aggressive and that if he hadn’t responded that day to all the medicines, she would have hospitalized him.

What amazed me was not how vicious pneumonia can be, because I was hospitalized for it twice as a kid. What shocked me was how fast J went from being mildly sick to dangerously sick. I asked if his prematurity had anything to do with the rapid progression of the pneumonia, and the doctor told me no. He’s never showed signs of lung damage or asthma before (amazingly), and now that he’s nearly four, many of his risk factors for illnesses are no different than other children.

Whatever made J so sick was just an awful virus or bacteria. J and M had mirror illnesses, but she had her last Synagis shot the day I took the kids to the doctor for ear infections. She improved immediately, so maybe the Synagis shot boosted her immune system. Or maybe it was just a fluke that J caught something else.

I thought I was managing the stress of having a sick child, but I’ll admit it: I almost had a nervous breakdown when the nurse put the oxygen mask on J for his first breathing treatment. It was another of those NICU flashbacks! I was transported back to that time when he was so tiny and his breathing was so labored and I couldn’t see his face for all the tubes. But, what kept me from teetering over the edge was J’s need for me. I didn’t want him to know that his illness was scary.

When we left the NICU with J, I always felt like I was waiting for the other shoe to drop. It was inevitable. All of our good fortune would catch up with us. I just knew it. A baby can’t be born as early as J under such emergency circumstances and have no complications. It just seems impossible to me.

Even more miraculous is that when the other shoe did drop and J had a terrible case of pneumonia, he wasn’t a baby or even a toddler. It wasn’t the result of RSV. And the doctor didn’t treat him any differently because he was a preemie. He was just a kid who got really sick.

Do you know what that means to me?

Another Synagis Odyssey

Last night I opened the mail. A letter informed us that M will no longer receive secondary insurance, as of last week. Our secondary provider covered last month’s Synagis shot and has approved her for four more. So, this morning began yet another odyssey for a Synagis shot. I spent an hour on the phone trying to work out why M is losing coverage six weeks early. The best I can hope for is one more Synagis shot for her, but, as any Preemie Parent knows, that one Synagis shot–especially during the holiday season–is worth all the hassle.

As I was getting off the phone with the staff member at our pediatrician’s office who oversees all the Synagis approvals, I told her, “I am so thankful that I don’t do this for a living!”

She laughed, but then she said something that surprised me. “Actually, it’s all worth it when a child we didn’t think would get Synagis does.” That made me smile.

Surviving the Long Winter Quarantine

Today, I’m over at Preemie Babies 101 with my first post.

Surviving the Long Winter Quarantine

We Have To Keep M Healthy

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.

Why Preemie Lungs Are Different

 

A Season Of Illnesses

Where in the world have I been?!

Well, two weeks ago we went on our first vacation in 18 months. Trips with the kids aren’t stress-free, but they’re still a welcome change from our routine. We spent a week at the beach with some of my family. J is just now old enough to really appreciate that we’re on vacation, and some of his questions were amusing. Why are we at the beach? Why is Papa not at work? Why are Pop and Mae here? (His whole world has changed with his recent discovery of the word why, and he now uses it A LOT.) We had to teach him the point of a vacation because in his world it makes no sense to leave home to go stay in someone else’s condo.

Unfortunately, while we were on vacation, both kids came down with colds. On the way home, we had to stop in a CVS MinuteClinic for J to see a nurse practitioner, who confirmed that he had a double-ear infection. Then, a few days after we arrived home, we had to take M to the doctor, and she also had an ear infection. In fact, hers was so bad that her ear drum had ruptured, even though she’d never run a fever and wasn’t overly fussy. The next day J ran only the second fever of his life, which brought on another doctor’s appointment. A test showed he actually had the early stages of mono, though his virus has now traveled through the whole family, making mono an unlikely culprit. The end result is that we have been one sick–and busy–household for weeks now.

All this illness has made me extremely nervous about RSV season. Before J, I never worried much about cold and flu season. Being sick was an inconvenience for sure but not life-threatening. J’s first winter was a terrible one for me, because we were housebound. But, I kept him illness-free until he was 17 months old, giving him some extra time to get bigger and stronger.

M is a different child and a different story. She’s 9 months old going into RSV season, instead of 3 months old. She has an older brother who exposes her to all sorts of illnesses. I think she is stronger than he was because she was less premature and she’s older. She’s been in Mother’s Morning Out for a few months, and until recently, I was sure we were making the right decision by exposing her to other babies.

I’m no longer so sure. It is unlikely she’ll receive the Synagis shots to protect her from RSV, even though our doctor has been advocating for her to get them. And with all the illness lately, I’m really pondering what is in our best interest.

Pulling her out of Mother’s Morning Out would have career ramifications for me. I’ve already abandoned most of my professional life, because caring for these two tiny babies has been my job, more than a full-time job. But, I’m having to make some hard decisions now that will largely dictate the next several years for me, and I am struggling. I think I know what I must do, but it doesn’t make the decision any easier.