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Crohn's Disease Forum » Parents of Kids with IBD » Anyone get their kid's remicade covered on year abroad?


01-22-2015, 09:18 PM   #1
Sudsy
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Anyone get their kid's remicade covered on year abroad?

Our dd wants to go on a gap year to Israel next year and we are having real troubles finding out how to get insurance (any insurance....) cover remicade while she's there.

Her program will be covered through a college year abroad, but the college's US student health will not cover care overseas. Our insurance company says they will not cover long-term care overseas. The Israeli insurance companies say they either won't cover pre-existing conditions or will only cover them (at a hefty premium) for care of a flare, but not of something we know she is going to need while overseas.

dd will be 18 while there (in case that matters) and still fully covered under our family insurance. My husband is thinking maybe there is something in the Affordable Care Act that might help us, but not sure if it's for care outside of the US.

Remicade is $6000/infusion at our hospital. I am looking into what it would cost at an Israeli hospital, since the hospital here suggested that the best we might be able to do is get our insurance to cover the medicine itself and then we would pay for the actual infusion.

Any ideas?!?!?!
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19 y/o dd dx'ed with Crohn's at age 8.

14 y/o dd dx'ed with Crohn's at age 7

11 y/o dd with Celiac just to keep things interesting around here....
01-22-2015, 09:29 PM   #2
crohnsinct
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Yikes! Interesting. Do you have Remistart or extended access? They cover your deductible less the first $50 so maybe they would cover it. But I think that is only up to $8,000 and you would burn through that in two infusions. Hopefully it isn't as expensive abroad.

I know I have heard people in our infusion center arranging sites abroad but I don't know if it was long term.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-22-2015, 09:38 PM   #3
Maya142
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Not completely sure but my older daughter looked into this when she was on Remicade. She was around your daughter's age and was very upset that she would never be able to go abroad. Her rheumatologist was not sure at the time but thought it might be possible to get insurance to cover them. I should add that my daughter stay on our insurance and didn't switch her college's health insurance.

Anyway, my daughter was eventually switched to Humira and so far has said she won't be studying abroad (but that could change any day...you know college students) so I never really figured it out. I feel like a pediatric GI might know better than an adult one (we asked my daughter's adult rheumatologist, who didn't have very many young adult patients and looked at us like we had totally crazy to let her study somewhere else on so many meds).

I do know of one college student who is on Remicade for Crohn's. She paid for her infusions in Israel (put it on her parents' credit card) and when she got back to the US, her parents appealed (and appealed and appealed) and finally her insurance company covered it. Her GI did know a GI in Israel and was able to arrange the whole thing.

Good luck! Let us know what you find out!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-25-2015, 12:35 PM   #4
Sudsy
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Thank you both. I really appreciate your taking the time to answer.

Like everyone here, I want my kids' IBD to impact as little as possible on their lives.....We'll see what happens with this big thing. It would be such a shame if she was healthy enough to go abroad for a year, but couldn't b/c finances/insurance.....
01-25-2015, 01:07 PM   #5
Maya142
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I really hope you can find a way for her to study abroad. It would be such a shame if her meds prevented her from going.

I tried to look it up though and this is what I found:
If you are studying abroad for a semester and currently receiving Remicade (infliximab), be aware that it may not be easily available in the country in which you are studying. We have had students studying in England who were told that they could easily get infliximab, but the process of getting it approved by the national health service led to untimely delays, and flares of their inflammatory bowel disease.
That is from the Boston Children's Website: http://www.experiencejournal.com/bch...broad-with-ibd
01-25-2015, 11:43 PM   #6
Catherine
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Paging Worriedboy for advice.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
01-26-2015, 03:31 PM   #7
Mehita
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This may not be feasible at all, but if she's on an eight week schedule, could she fly home, get her Remicade and fly back? Would the cost of airfare be less than paying Remi out of pocket? Six trips in a year. Maybe even if timed right, could be four trips.

I know that kind of defeats the whole purpose of gap year and stretching her wings, but...
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
01-26-2015, 03:52 PM   #8
worriedboy
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Hi,

I am not surprised at all from the answer you got from the Israeli insurance companies about pre existing condition. They are probably not your address.

I assume that neither your daughter nor one of you, her parents, got an Israeli passport ?

I don't find a huge difference if she went on a college year anywhere else... if your insurance (at home) covers bills abroad then you're good to go. If not - you have to find your own solution or give up.

Being practical :

1) If somehow you are able to cover the meds, I believe there should be no problem to arrange the infusions here; however, I will have to dig into it as to what's the best option in your case. As far as I know Remicade infusions here are given at the public hospital system and if that's the only option I will have to find out what is the fee for visitors

2) Is there any chance she can switch to Humira ?

3) Will her insirance be covering everything else beside the Remicade ? Scopes or GI visits if needed ? ER visit ?


Out of curiosity - which university did you daughter take a look at ?
02-01-2015, 10:25 PM   #9
Sudsy
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Thanks, Mehita. We are definitely considering flying her back every 8 weeks.....Yes, not quite the experience any of us were hoping she'd have, but, then again, it would be *most* of the experience!

Worriedboy: you are in Israel? Neat! We're considering making aliyah as a family this year (while this is not the main reason, it would certainly solve this problem, as it seems that, as soon as choose a kupah [which could happen at the airport], our medical care would be covered, including Remicade). Anyway, pilot trip in 1.5 weeks so we'll see what the other kids think of being there/if we can swing this!

The college dd is likely to attend in Touro.

Thanks so much for the help and advice, everyone! I wish I had a final update on how this was going to work out. I did contact CCFI (CCF in Israel) and have had some lovely conversations with their director. No answers yet, but she has sure tried to be helpful.
02-01-2015, 10:28 PM   #10
Sudsy
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p.s. to Worriedboy: Her GI doctor wants her to stay on Remicade b/c it's working so well for her.....

--no Israeli passports (yet!)

--our US insurance is an HMO (which basically means it stinks. Then again, my family certainly uses a TON of medical resources, so we have nothing to complain about and my husband says every year that we should send them a note of apology about how much $ we cost them....). Our insurance says it will cover any EMERGENCY outside the country, but nothing about standard care that can be expected. So she could have a scope if she had a horrible flare (which hopefully will not happen), but not one b/c they just wanted to see how her disease was doing.

Thanks for the help!
02-01-2015, 11:56 PM   #11
Maya142
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I asked M's GI's nurse practitioner out of curiosity, since I was on the phone with her this week. She said they had had college students study abroad and generally the GI's at the hospital were able to set up Remicade infusions in other countries. She told me of one girl who had recently studied in Spain.

Did your GI have any ideas?

M is 18 and recently said she would like to study abroad. We have some time, but she is on Remicade every 4 weeks, so I doubt we'd want to fly her back and forth. I'll ask her GI for specifics when we next see her.
02-02-2015, 12:35 PM   #12
worriedboy
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Thanks, Mehita. We are definitely considering flying her back every 8 weeks.....Yes, not quite the experience any of us were hoping she'd have, but, then again, it would be *most* of the experience!

Worriedboy: you are in Israel? Neat! We're considering making aliyah as a family this year (while this is not the main reason, it would certainly solve this problem, as it seems that, as soon as choose a kupah [which could happen at the airport], our medical care would be covered, including Remicade). Anyway, pilot trip in 1.5 weeks so we'll see what the other kids think of being there/if we can swing this!

The college dd is likely to attend in Touro.

Thanks so much for the help and advice, everyone! I wish I had a final update on how this was going to work out. I did contact CCFI (CCF in Israel) and have had some lovely conversations with their director. No answers yet, but she has sure tried to be helpful.

A pilot trip sounds super !
As you said, once a citizen, you got the coverage from the kupah... that's why I was asking, obviously.

Does Touro colleage has student exchange with Israeli universities ? Had no clue...

Well you are welcome to page me if there is anything else I could help with; I hope you hvpave great time on your trip, and that you find a reasonable arrangement for dd.

All my best to you.
02-02-2015, 01:15 PM   #13
Sudsy
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Thank you both!

Maya142: The remicade nurse (who is beyond fabulous) has contacted our GI doc about this, as well as the head of the department (who has a connection to a pedi GI in Israel). I'm going to check in with the doc myself a bit later this week to see if I can get things moving along a bit. Maya, that is so nice that you thought to ask your nurse about it! I am very touched!
04-30-2015, 06:28 AM   #14
Sudsy
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Despite much effort, we STILL haven't been able to figure this out.

1) Her Remicade schedule got moved up to every 6 weeks, so flying her back just flew out the window due to the extra cost, but, anyway

2) We are moving to Israel this summer. While the rest of the family will become citizens this summer, we were hoping to wait for her to make a decision when she is a bit older (she would just come as a student abroad for the year). So my other dd on remicade should be covered as soon as we land in Israel, but still trying to figure it out for C.....

3) If we pay out of pocket, it's going to cost about $40,000. Can't exactly take that from spare change . (If we stayed in the US and paid out of pocket it would be $60K, so there is a discount).

4) Looking into Remsima now. That's one of the new biologics that's a lower-priced version of imfliximab. Any thoughts about that?

Thank you!
04-30-2015, 01:44 PM   #15
kimmidwife
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No thoughts about the new biological but wishing you really good luck with your move! Do you have a GI yet?
We have a good friend who is a pediatric GI there. I think he is at Sharei Tzedek. He did his fellowship in St. Louis with our old doctor and his son was in my son's class. They were best friends until we moved and they went back to Israel.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
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LDN Jan 2012-June 2014 Got My daughter back!
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Lost remission June 2014
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05-11-2015, 06:11 PM   #16
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Sudsy, I am wondering if you have found a solution to your problem. DS was diagnose in May 2014, he has been on Entercort for a year now and failed Methotexate in february 2015 and has been on Imuran since. His last MRI and bloods show the Imuran is not working. He is to begin Remicade at the beginning of June and is supposed to be going to school in Israel come September. We think we have found a GI and a centre when the infusions can take place. The pharmacist who has been helping me said some of his patients have taken the Remicade with them to Israel. I know that might not work for you long term but it may be a good solution for now. Best of luck with your Aliya.
05-11-2015, 09:17 PM   #17
Sudsy
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mom4, I wish I had an answer for you (and me!). I am waiting to hear back from a woman who successfully got her two kids' Remicade covered while they were learning in Israel. Ironically enough, my email reached her just as she was leaving for....Israel. She's supposed to get back to me sometime later this week.

We have given up any hope of getting a US insurance to cover this. Can't say as I blame them as they know it's going to be a huge money-losing thing for them.

The GI we chose in Israel is Dr. Michael Wilshanski at Hadassah Ein Kerem. I've emailed with him and he seems very nice.

It seems quite likely that dd will become a citizen. Unfortunately, that opens up another barrel of issues (the great college scholarship she got cannot be used by an Israeli citizen, only an American citizen, to name a big one. sigh).

Most everyone I have spoken with talked about bringing Remicade with the person to Israel. Yad Sarah (by one account) will meet you at the airport and take the remicade so it is properly stored. Other places told me they will not, under any circumstances, give a medicine that was not in their care or the care of a medical transport company (I can look up what place told me that if it's helpful to you).

Good luck! Hope your son finds just the right treatment program and soon feels GREAT.
05-14-2015, 12:12 PM   #18
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I found a doctor in Israel, and clinic to administer the Remicade. We will be bringing the meds from Canada and they will store it. Such a happy day! If anyone would like the info I would be happy to pass it on. Now I have to figure out the insurance.
07-13-2015, 01:16 PM   #19
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Hello. I never participated in an online forum before but just discovered this site while researching a solution for my son to receive Remicade when he attends yeshiva in Israel in September of 2016. My insurance company absolutely will not cover Remicade in Israel. They will only cover emergency room visits. I am currently in Israel this summer visiting family and made an appointment to see pediatric gastroenterologist Dr. Perry Millman at Hadassah Ein Karem. She was referred to me by my sons gastroenterologist in NY. If he can't get coverage, we will consider flying him home every 8 weeks for his
infusions. Any suggestions or comments will be greatly appreciated.
Thank you!
07-13-2015, 09:12 PM   #20
Sudsy
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Hi JLPmom,

Sorry you too are having trouble figuring this out. The more I look into this/talk with other parents, the more amazed I am that *anyone* with US insurance ever gets their kid's Remicade covered while the child is overseas.....

I hope Dr. Millman has some input for you. Please let us all know. As you yourself showed, we never know who is also looking for this info online and who may be greatly helped by the info you find.
07-14-2015, 03:06 AM   #21
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Hi Sudsy,
Yes, it has indeed been a frustrating battle. We are all in the same boat.
I'm meeting Dr. Millman this Sunday. I'll keep you posted.
By the way, a friend of mine from NY was able to get the Remicade approved for her daughter when she arrives the end of this summer. They have a very comprehensive plan with Empire Blue Cross/ Blue Shield. It took them a year of fighting! Their daughter will be using Dr. Millman for her infusions.
Hope to have positive news to report!
04-07-2016, 08:17 PM   #22
Flyboy
 
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Hi I'm new to this board and was wondering if anyone has had any luck getting their kid Remicadee infusions in Israel. My daughter has a 10 week internship there this summer and is just starting Remicadee. We are hoping to get all loadinng doses in before she goes. It sounds like the insurance compaines won't do squat so the best option may be to send the remicade over with them from the U.S. I'd be most appreciative of any advice
04-07-2016, 10:08 PM   #23
Sudsy
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I hope others chime in with their ideas/help, Flyboy.

JLGPmom, my daughters switched to Dr. Millman a few months ago (they wanted a female doctor) and we all LOVE her! How are things going for your son here? I hope he's enjoying yeshiva life.
04-07-2016, 10:53 PM   #24
mom4
 
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My son has been in Israel all year. He's been seeing Dr. Turner at the Shaar Tzedek in Jerusalem. We brought the Remicade from Canada, we took it straight to the hospital and they kept it in the pharmacy fridge. It's been a great experience. Let me know if you have any questions.
04-08-2016, 12:48 AM   #25
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I had a medical emergency while studying there. My American insurance covered , 90% I didn't bother getting Israeli insurance as they're impossible to deal with. Good luck

04-08-2016, 06:39 AM   #26
mom4
 
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The Israel insurance doesn't cover pre existing conditions. When he sees the doctors and has the infusion we pay out of our pocket. Our Canadian insurance wouldn't cover him for that.
04-19-2016, 02:17 PM   #27
JLGPmom
 
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I hope others chime in with their ideas/help, Flyboy.

JLGPmom, my daughters switched to Dr. Millman a few months ago (they wanted a female doctor) and we all LOVE her! How are things going for your son here? I hope he's enjoying yeshiva life.
Hi Sudsy,
I had trouble getting back onto the forum. I forgot my username and password. So my son is going, God willing, in September 2016. No luck getting the Remicade covered in Israel as a student/tourist. We are going to be sending it in from NY and hopefully storing it in the hospital pharmacy (still trying to get that worked out). I'm so happy to hear that you love Dr. Millman. That makes me feel confident that my son will be in good hands. My family is actually making aliyah by the end of June 2017. Once we are all there, we won't have any problems getting the Remicade because he will be a citizen and Remicade is covered in the basket of services. Hoping when he's a little older and more mature, he will go on the SCD diet. My son has gained 80 pounds in the two years since he's been on Remicade. Wishing everyone the best of luck and happy Pesach.
04-19-2016, 02:21 PM   #28
JLGPmom
 
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Hi I'm new to this board and was wondering if anyone has had any luck getting their kid Remicadee infusions in Israel. My daughter has a 10 week internship there this summer and is just starting Remicadee. We are hoping to get all loadinng doses in before she goes. It sounds like the insurance compaines won't do squat so the best option may be to send the remicade over with them from the U.S. I'd be most appreciative of any advice
Hi Flyboy,
I just posted a response to Sudsy. I had no luck getting Remicade covered in Israel. We are going to be sending it over ( packed in ice ) with somebody that's traveling to Israel. Still in the process of figuring out where we're going to store it. Hoping the hospital pharmacy. If not, will have to store it in the yeshiva. Best of luck!
11-10-2017, 04:56 AM   #29
Sudsy
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Anyone have any updates re this? I have a friend's friend whose daughter wants to come to seminary and (of course) having trouble getting US insurance to pay....
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