MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

Frustration & Anger with Insurance Companies!

I started my fight for Cameron to get his April synergis shot in early March. I Contacted the insurance company upon receiving a letter that stated he was only approved through March. Cam was born on 11/1/05 at 30 weeks with severe IUGR. His birth weight was 780 grams (1lb 11.5oz). He was born at the very beginning of RSV season and is way below the growth chart. He will be 6 months (actual) on 5/1 and his weight this week was 9lbs 4oz. So I had switched pediatricians in March and trying to get them to agree to writing the letter of medical neccesity was so annoying. "Well we don't usually write letters if the doctor hasn't officially seen him yet." Well can you make me an appointment ASAP then? Well the doctor is on vacation this week. We'll talk to him when he gets back and get back to you. Fine. Whatever. I spend the next 3 WEEKS calling and asking the status of the letter because Cam's home nursing company called to cancel his April shot appointment because they had yet to hear back on approval from insurance one way or another. We was due to have the shot a week ago today. The doctor finally sent the nursing company the letter early last week. They faxed it to the case manager at our insurance company and have been calling him for a week to get an answer. They've heard NOTHING!!! Then I call the insurance company myself and they tell me that approval can take up to 30 days!!!! OH PLEASE! So if a baby needed approval to be released from the hospital they're telling me it could take 30 days?!?!? I doubt that! I think they're just trying to sit on the request long enough so they can say that RSV season is over and he doesn't need the shot. I am SO frustrated! Wouldn't the cost be greater to them if Cam ends up in the hospital with RSV????? If I had an extra $1800 lying around I'd buy the shot myself, but we don't! It's hard enough to keep up with household bills let alone the constant $20 visit co-pays here and there along with costly prescription co-pays. GRRRRRRRRRRR!!!! This is so frustrating! He's not a statistic! He's a little baby boy who needs a shot that is available to him! SO STOP THE POLITICS AND GIVE IT TO HIM!!!!!!!!!! Ok so I just needed to get that out. I've been thinking about it all day at work and haven't been able to get a thing done. If you made it this far thank you. I just wish some of these people who play god with our children's treatments could spend just one week in our shoes. Lets see how much a trend chart on RSV really matters to them. I don't care about the trend. My baby hasn't followed "the trend" since day one! Alright I'm done. I could go on forever, but that should do it for now. ~ Vicki
Cam's Mom

8 Replies

  • Triplets333
    SYNAGIS IN FL
    Do you have any info from your Dr. showing that RSV season is year round?

    I have 28 week triplets.

    Thanks,

    Corri
  • lilyrosedreamgirl
    Lily got her 1st synagis in the hospital in december on the 7th we were told that home health would contact us for the next shot in jan we waited but heard nothing i called the nurse who comes to see her but she does not give the shots childrens gives the shots so i called them and the hospital had never faxed them the referal for her to even get the shot we straightend that out and then the insurance co gave everyone the runaround until jan 19th,12 days late,the next month we got the run around again because the insurance approved homehealth to give the shot but sent 4 more vials to the dr office so no one knew who should give it ,this month there was finally no hassle and next months shot is sitting at the drs office now they said that she might need the shots next year too...I hope it isnt more hassle i had too make up tp 10 phonecalls a day just to get the shots covered.
  • mothonroque
    Spencer's Mom weeks
    Vicki,
    I hate to hear what you are going through. Two weeks ago they informed us Spencer would get no more shots b/c he hadn't been sick. If he got sick then they would evaluate again. CRAZY. I also feel its so much easier to get these preemies their shots instead of waiting on them to get sick and have to pay for hospital stays. I was really beside myself when I was told I know what you must be feeling. They play with our emotions which are still raw from our NICU days, at least mine still are. My thoughts are with you. Keep fighting.

    Madeleine, mom to 28 weeker, 1205g :smile:
  • Kathryn:Mom&NICU Nurse
    I am not sure if this will help at all. Our family has BCBS of CNY. A great insurance company until it came to Synagis. Our 28 weeker had to have Synagis for 2 seasons and our co-pay was 600 a month for the shots. I contacted the state and they paid for the Synagis under medicaid because they considered my daughters medical conditions a disability. Maybe this info can help somebody in the future.

    Kathryn
  • colleene
    Synagis Challenge
    I too have been writing appeals and my dr.s have as well. My son was 37 weeks(dob 10-11-06)- but was in NICU for 2 weeks with RDS, pneumothorax & 2 chest tubes. With two older children, its inevitable that he will get it. My other son was 36 weeks and had RSV @ 5 months. So I know first hand the horror of RSV. We all had a mild head cold about 6 weeks ago- the baby is STILL fighting the congestion. I am trying to prove he has a chronic lung disease as this is the only way BCBS of NJ will pay. We paid for 2 months of synagis to the tune of $3009!!! I can't do anymore and hope I can get them to reconsider. I think I am going to write Oprah and Ellen- they are generous!!
  • James SooHoo
    Re: Synagis & RSV Red Tape
    Hi there,

    You may find this information useful. I got this MedImmune (the makers of Synagis)...

    For familes without insurance, there is the MedImmune Assistance Program (MAP) and they can be reached through the MedImmune Help Line at 877-MEDI-411.

    For familes that have large co-pays, there is a foundation unaffiliated with MedImmune called the Patient Access Network Foundation for families that qualify based on income guidelines. In the disease states where PANF focuses (of which RSV is one), the PANF will help to cover the co-pay for qualifying families. MedImmune does make grants to this foundation.

    If a parent's insurance company simply refuses to cover Synagis for their child (e.g., if they deem it out of guidelines) and they want the medicine anyway, there is no third-party recourse. Regulations essentially prohibit MedImmune from working directly with any families other than ones with no insurance, and the PANF helps with co-pays only.

    I hope this helps.

    Good Luck,

    James
  • hotbabe2301
    This is ridiculous! I agree. We made the mistake 0f only having one insurance plan instead of two. So now if the insurance company will not except that the shot is medical not pharmacutical, we will be paying 334.00 out of pocket each month.....who has an extra 300+ laying around each month? seriously?It isnt a problem to help babies in other countries! :chagrin:
  • 2MiracleBoys
    Vicki,
    I'm so sorry you are running into so much hassle and red tape. It is ridiculous what companies will do to keep costs down, all at the expense of people already trying to make a living on meager wages and rising costs.
    You are right about hospitalization and I would keep reminding them of that. It would be a lot cheaper for them to cover an $1800 shot than to cover a PICU stay. (I'm sure it'll cost $1800 just for that first hour) Keep on calling them until they approve the shot. The squeaky wheel gets the grease.
    Keep us posted on Cameron. Good luck!

    Kat :pbpt:
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