Insurance/Remicade?

[kodles]

Hi there!

As I mentioned before, my daughter has been newly diagnosed with Crohn's just 2 weeks ago. We've started the prednisone, the ciprofloxacin, and the metronidazole. We're waiting to start on the Remicade, but the insurance company (Great West Life) rejected our initial claim saying that Sadie is too young (she's 6). We've started the appeal process, but I was just wondering if anyone else has had trouble with their insurance companies covering this med?? And if they don't cover it, what are my other options??? I'm under the impression that this is THE med to be on. I'm also baffled by the fact that insurance can say no?!?!

 

[my little penguin]

Most insurance's required you "fail" the other drugs before covering remicade.
Our does. Even then some do not cover remicade.
DS was 8 when he started remicade but he had failed all of the traditional drugs before it.
The only other option if the appeal does not go through would be ask your employer to file for an exemption with the insurance company so the med could be covered that way.

Otherwise you will need to meet with her Gi and figure out a new med plan .

Good luck

 

[crohnsinct]

Love the name Sadie!

Sorry we are in the U.S. and have a pretty awesome policy with an employer who has hundreds of thousands of employees. Remicade was covered no problem.

Good luck! Maybe contact the Remicade people and see if they have any programs in Canada to help cover costs id denied by insurance. They have plenty of programs here in the USA.

 

[Jenn]

Ours covered it, but check out the Remicade web site, http://www.remicade.com/pediatric-crohns-disease/patient-support as they have a financial assistance program and faq. Look in to any government programs that might help specifically for kids with chronic illness too. Remicade is usually approved first, before Humira, for instance, but you could ask your insurance if Humira is covered instead. They probably only need a letter from the GI doctor explaining the medical necessity for Remicade use, especially with the top-down approach for kids. The Remicade site even says it's for kids ages 6-17, so I don't see how she's too young. Good luck!

 

[Tesscorm]

Were you given the name/contact for a BioAdvance rep? They seem to be the liaison between our GI and remicade.

While we didn't have any problems in getting it covered, it was the BioAdvance rep who submitted all the paperwork. Also, a friend (also in Toronto), whose son also just started remicade had her insurance cover only 'part' of the cost. She spoke with her rep from BioAdvance and they arranged for the balance to be covered by remicade (I believe?).

 

[killcolitis]

I'm in Toronto and have GWL as well. Oddly, they approved it for my daughter (now 7, due to start remicade tomorrow) last year when she was 6. She has a UC dx not CD and I would think that would make it even more difficult to get remi. Is there a contact person at your hospital who liaises with the insurance company? You should have support in dealing with this.

 

[CrohnsKidMom]

GWL has a "formulary", a list of preferred drugs for specific diagnoses. This not uncommon for insurers. I'm sure this is just a minor hiccup, but should you continue to have an issue with coverage, you should explain your situation to the appropriate HR person with your employer who can contact your GWL rep. Your coverage has less to do with GWL themselves, and everything to do with the actual plan your employer has in place. Every insurance plan is tailored to an employer's needs and requests, and the amount of money they are willing to pay for coverage for their employees.

 

[kodles]

Thanks for all the advice guys! I actually have spoken with the Remicade rep, Sarah, who has started the appeal process for us. I'm just very, very impatient and they say we won't get an answer to the appeal for 5-7 days. We just sent in the paperwork on Monday so I'm getting a bit ahead of myself! It might sound silly, but I'm really scared that the longer it takes to start the Remicade, the prednisone will stop working and she'll go right back to where she was. We've been on the pred for 2 weeks now, and have just started the taper. Her mood swings are better since we started the taper, but she is feeling better and I'm so scared she'll go back to where she was if it's not started soon enough!! Is that crazy?!?!?! Does anyone know if that's a possibility?? What was it like for your kids? And, just so I know, (and hear it from real parents!), our kids will go on to live completely normal lives right?? Like, I understand that this disease will be a big part of her life and we'll have to deal with it, but she'll be able to do the things she loves again?? (she's recently stopped swimming lessons because she was so afraid that the water would make her poop...this of course was because of the flare....), and she quit skating because she had no energy.....sorry....I'm worrying again!

 

[CrohnsKidMom]

My son started Prednisone on Apr 1 and started tapering off on May 1. He started to feel better after 1 wk, but it was just his last bloodwork a week ago that showed his inflammation is down to normal levels. Yay! He is still on it, but at currently at 1/2 the original dose. Prednisone has some nasty side affects and risks, so they don't like to keep kids on it for long, but it does work well. How effectively it works may depend on where the inflammation is and it's severity.

 

[Mehita]

I remember the first time DS was on pred. He was out playing football with the neighbor kids and having fun. DS is not a rough and tumble sort so I was just shocked. I happened to be talking to the GI nurse as I watched him out the window and she said this is what DS would be like if his body wasn't fighting Crohn's all the time. At the time, hearing that made me cry, but it also gave me hope for the kind of life he can lead once we get the Crohn's under control.

DS joined the high school tennis team this spring. I had to keep pinching myself because he was doing a normal, happy, healthy kid thing.

When she's feeling better, life will get better and she'll pick up her old activities again.

 

[my little penguin]

DS stopped swimming etc
He has since gone back
Things are not perfect
But very livable and kids adapt better than adults
DS was not permitted to wean pred until after he was on remicade

 

[DanceMom]

My daughter is 8 and was recently diagnosed as well. Those first few weeks were very emotional for me. One minute I was relieved that we finally had answers, the next I was devastated that my baby has a chronic illness. I still feel those same emotions, but now that some time has passed I'm finding it a lot easier to think of other things and basically go on with life.

My daughter is on Prednisone as well and experienced mood swings for quite some time. For the time being she is happy and her mood is stable but I'm always a tad on edge that things will change and she'll be mad at the world again. I've found huge comfort in talking with other parents here and seeing that they are going through similar things with their kids. It just helps to know you're not alone (because sometimes it seems that no one could ever understand).

 

[crohnsinct]

Without another med in place a taper off prednisone may result in symptoms coming back. That is what happened with my daughter even on Remicade. It was as simple as slowing down the taper until the Remicade was able to take over on it's own. We eventually had to do an 8 week course of EEN to help the Remicade out. Since then it has been 10 months of smooth sailing!

She is beyond active. Swims 2 hours a day, dryland training twice a week, runs on track team 3 days a week and used to also bike competitively but we stopped that. Originally because the doc wanted her to gain a little weight but we never went back because with all the texting drivers, riding a bike on the roads these days is ridiculously dangerous. A boy from her team was paralyzed when hit by a texting driver!

She is a straight A student and hasn't missed a day of school since dx. It is possible but it takes a little while of ups and downs to hit what will work. Took us five months. The docs have lots of tricks up their sleeves. Patience is the key. This is a marathon not a sprint!

Wishing you all good things. Keep us posted!

 

[Tesscorm]

When Stephen was diagnosed, my head was filled with worry over how this would affect his quality of life, etc.... once his flare was under control, he was back to all his normal activities - hockey, out with friends, etc. :thumright:

Here's a link to the Kid's Success stories... helps to read through them when you're still trying to get to remission! http://www.crohnsforum.com/showthread.php?t=27079

Also recommend you look into Enteral Nutrition (EN), when used exclusively (no food, formula only) it can induce remission but even when used as a supplement (so, formula plus regular diet), it will provide her with necessary nutrition. Inflammation in the small bowel can cause malabsorption and some of the EN formulas are formulated in such a way that they are very easily absorbed. There are lots of kids here who are on meds for their crohns but supplement with EN shakes. Crohns can have an impact on growth and development and supplemental EN can help offset any impact.

Here's a link to another thread re Kids on EN - http://www.crohnsforum.com/showthread.php?t=36345

 

[Jenn]

I understand your impatience, but it should work out ok. Symptoms usually do reappear with the prednisone taper, so hopefully you can get started soon. Remicade usually works fairly quickly, weeks vs months with 6mp, for instance. You can always increase the pred again while you are waiting. Expect some trial and error and occasional setbacks though, the meds don't work for everyone or have too severe side effects. Yes, she can get back to a normal sort of life, but it will always be a challenge, more of an extreme roller coaster than usual. Still hoping for a cure SOON.

 

[kodles]

YAY!!! Thank you all so, so much for your advice!! Our bioadvance coordinator was able to get the insurance coverage, so we are starting remicade Tuesday!!!!! I felt like I won the lottery when I got the call (though I've never actually won the lottery, so not sure )

It is a terrible thing for a child to have to deal with . Hopefully they find a cure soon!

Anyone else doing Gutsy walk June 9??

Hugs to all of you and your babies for having to deal with this.....Thank you all again, so much!

 

[killcolitis]

Great news!! I hope she responds well and quickly. We just started remi last week (my daughter is seven and has UC). We're in Toronto - if you want to chat or compare notes (I don't know if you're at the same hospital or not?) feel free to pm me.

 

[Clash]

Glad to hear that the insurance went through on the Remicade. I hope it can get your daughter into remission quickly!!

 

[my little penguin]

woohoo on the insurance - always good to hear

 

[Farmwife]

I hope the new med works quick. These kids should be running around and driving us crazy.