Preemies & RSV: Working with Insurance on Synagis Coverage

RSV Strikes Fear in the Hearts of Preemie Parents
For those of you working through your first RSV season, know that we totally get your fears. Handwashing, quizzing loved ones about illness and lockdown weren’t supposed to be on your to do list this year. Thankfully there is a drug on the market that should be available to you to help your child through the season – Synagis. Given every 30 days from around October to March/April, this injection provides your preemie with much-needed added protection. As you know by now, no parent, even a parent of a healthy full-term baby, cannot be 100% vigilant on protection. It takes every resource you have to do it.

More Information on RSV
For those of you wanting more information about RSV, our ally organization, Hand to Hold, has a great video:

Working with Insurance on Synagis Coverage – Even When it is Denied

1. Ask your child’s doctor to contact the insurance company and to speak to the Medical Director. This has worked for other parents and may work in your benefit as well.

2. Contact the Bureau of Insurance for your state and file a complaint (this group may be named differently in your state but should be housed under your state’s State Corporation Commission). This regulatory body for insurance in your state will then take your complaint and call the insurance company. Provide the person working your case with information regarding your child’s NICU stay and any illness history since discharge. Also a letter from your doctor would be helpful especially if your child was rejected and the doctor still thinks you should go ahead with Synagis and pay for it yourself.

3. Contact your legal aid society for your state and ask for help there. There were two lawsuits in Ohio that were won against Ohio Medicaid for this very issue. So whether it is your private insurer or state medicaid, there is still hope.

Have a question or looking for a resource? Struggling?
Contact us! You shouldn’t have to go this road alone.

2 Comments on “Preemies & RSV: Working with Insurance on Synagis Coverage”

  1. Pingback: Synagis rsv | Tennisgang

  2. that often time cancer pattneis do the same thing. They go through the treatments, all the medical stuff, and are good – fighting, surviving. But it isn’t until after you are through the storm, that your emotional self comes to the forefront and you can address…what just happened? But than, it was hard this time around because the fear, anxiety of having another preemie was on the forefront. 3 years later, we have Beckett at 25 weeks, and it’s ANOTHER traumatic labor and delivery…not to mention another NICU journey. The feelings came back, yet I felt like I was having to deal with it all over again…except DURING the NICU stay with Beckett. I was so thankful that both Ben and I sought counseling and I also decided to go on some medication for depression and anxiety. I didn’t want to at first. I didn’t have to with Ellie, why would I with Beckett? I have a great support system, a church family, family, friends, Ben’s co-workers, my own personal faith…but my OB/GYN follow up appt…the doctor said something right on. He told me, “Mandy, you can have the biggest, best support system in the world, and that’s great, but you are mom. No one else is mom, and no one else can feel, or take the burden like you do…as mom.” I noticed a difference. I could face the day. The week we were supposed to bring Beckett home, our house got broken into. Talk about another form of PTSD, that’s it. Add that on top of all the other stress. Wow. Still don’t know how we made it through. So glad that’s behind us, but I’d be lying if I didn’t say how much of an emotional toll that had on us…just feeling violated. And now I was supposed to bring my second preemie home, to a place where now I wasn’t even sure I felt safe? I’m still dealing…although, Beckett is home now, and I’m still in survival mode. He’s eating every 2 hours, I am trying to figure out how to balance having two precious kiddos, and we’re in RSV isolation. Definitely agree this is a level of preemie parenting that NEEDS to be discussed. Very important both in the NICU to deal with feelings and emotions, but also AFTER the NICU too.I told someone in the NICU this time around that when I have lots of money, I’m going to fund a program to get licensed counselors into NICUs. So that parents can meet with them FOR FREE, and deal with the tough stuff, the shock, the denial. I know Ben and I benefited from counseling while Beckett was in the NICU, but let me tell you, I did NOT ever want to leave the NICU…so let’s bring the counselors to us!!!Ok, maybe this should have been my own post! LOL!

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