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Crohn's Disease Forum » Treatment » Humira - daughter working at Disneyworld for 1 year.


05-03-2017, 08:29 PM   #1
Oz lady
 
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Humira - daughter working at Disneyworld for 1 year.

Where do I start.....

My 19 yr old daughter was diagnosed with Crohn's in early Feb this year. She has been on Aza 100mg since then. Yesterday at her GI appointment, the Dr reviewed her test results and has applied for funding for Humira (Australia PBS) since the inflamation is still high and there has been no change.

The problem is..
She has spent the last 18 months studying so she could apply for for Disney International Exchange Program. She has had an interview and looks like she will start in Orlando in August. This is her dream and a once in a lifetime opportunity.

As yet we don't have details of the compulsory medical/health insurance for her but I am starting to get worried about it all, getting a GI, meds, tests, etc

I have started to do some research but getting a bit lost with it all.

Can anyone help with how it all works in USA especially Florida/Orlando and what options she has? I would be upset for her if she had to miss out on this experience because of her Crohn's. It's been hard on her so far and I can already see her getting down about it.

Thanks for any advice given
05-04-2017, 06:02 AM   #2
TammyR
 
Join Date: May 2016
Location: Adelaide, South Australia, Australia
I fear that your daughter might have trouble getting travel insurance Oz Lady. I hope I'm wrong but I basically cannot get travel insurance to the USA anymore. I've not had any surgery but have been on biological therapy which is immune suppressant which they really don't like.

My daughter is 16 and dreams of the same thing or dancing on cruise ships, I am very hopeful that her on and off stomach problems don't become Crohns.

I really hope that it all works out for your daughter. Keep us in the loop.
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Diganosed - Crohns Feb 2016
MR Small Bowel Study Jan 2016
MRCP 6/16, 7/17 - no change (2 small cysts)
CT Abdomen and Pelvis 10/16 - Acute/Chronic flare distal small bowel with at least two areas of partial obstruction identified.
Started Humira 12/4/17. Previously on Remicade (4 rounds - caused rash), Pentasa, Aza (caused pancreatitis).
05-05-2017, 04:02 AM   #3
Oz lady
 
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Disney have their own medical insurance which she has to sign up for so she will have cover but at the moment we don't know what it covers. We have excellent insurance, Bupa Global through my husbands work, but does not cover USA.

Our biggest concern is the cost. Here in Oz through medicare, the humira pens are very cheap. I have read various prices in USA ranging from $5 through a scheme to $2300 for 2 pens and her Dr said she would be on 2 per week!!

Not really sure what we can do for her.
05-05-2017, 06:54 AM   #4
TammyR
 
Join Date: May 2016
Location: Adelaide, South Australia, Australia
Disney have their own medical insurance which she has to sign up for so she will have cover but at the moment we don't know what it covers. We have excellent insurance, Bupa Global through my husbands work, but does not cover USA.

Our biggest concern is the cost. Here in Oz through medicare, the humira pens are very cheap. I have read various prices in USA ranging from $5 through a scheme to $2300 for 2 pens and her Dr said she would be on 2 per week!!

Not really sure what we can do for her.
My biggest concern would be that if she has an obstruction or similar you might be paying full price without insurance. Disney will probably exclude the pre-existing medical condition and Bupa Global not covering USA might be a big problem.

I hope I'm wrong for your sake. I know that I personally won't travel to the USA anymore due to having Crohns and not qualifying for insurance there.
05-05-2017, 04:43 PM   #5
Scipio
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Disney will probably exclude the pre-existing medical condition and Bupa Global not covering USA might be a big problem.
It is currently illegal in the US for insurance companies to exclude pre-exiting conditions. The current Congress and administration is trying to hard to weaken or repeal this and other aspects of the current law (Obamacare), but they have not yet succeeded. If they eventually do it will still be some time before the new law goes fully into effect. So I'm guessing if she buys a US health insurance policy she will probably be covered for the internship. But your daughter may want to inquire to the Disney Human Resources department about the Disney insurance and see what their coverage is in the first place for Humira and other IBD treatments.
05-05-2017, 05:02 PM   #6
my little penguin
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In the us there is humira complete
It's a copay program from the manufacturer of humira
The Disney insurance (if it even cover humira )
Would pay x amount of the humira bill at the pharmacy
Your dd would be responsible for the rest which is the copay

The humira complete program covers up to a certain dollar amount
The first prescription filled thru cover $2500 of the first copay and then
500-700 of the copay for remaining refills .

That is only for one box (2 syringes or pens ) per month covered in the manufacturing copay program
To get two boxes (4 syringes ) covered you would need to request the manufacturer copay plan escalate the copay program up the management chain
Then they cover it

The humira manufacturing copay plan will not cover three boxes (2 shots per week) a month
Ds is on humira every 5 days so twice a week

The good is most insurances have a max out of pocket for prescription drugs
So the amount the humira manufacturing copay plan pays for counts towards the Disney insurance prescription plan out of pocket
Once she reaches the max out of pocket then all of the rest of the drugs filled got the year are free including humira


Humira would be through the prescription plan at Disney not through the medical side of the insurance which covers hospitals/doc
Appt

This only applies if Disney insurance gives prior authorization.
Something to ask for

Humira complete (manufacturing copay plan )
Has to be signed up for separately

So worth calling and asking about prior authorization and calling my humira complete

https://m.humiracomplete.com/resources

Good luck
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05-05-2017, 06:45 PM   #7
Layla
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Are you sure your daughter would be on 2 doses a week? It sounds very unlikely to me to start that way. There are loading doses: 4 in one go then the next week (or 2 weeks, can't remember the details) another 2 and then 1 every 2 weeks is the normal schedule. I've never heard of starting on 2 shots a week. In NZ it isn't even possible to go to 1 shot a week, I expect Oz will be similar.
You will probably be able to get a few extra doses to take with her if you tell Medicare she's going on holiday, which should hopefully be enough time to get the insurance sorted in the US.

And an unrelated tip; get the syringes not the pens! Both hurt but the syringes are much less unpleasant than the pens.
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Layla
Diagnosed with UC in 1994, CD in 2014, IBS in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: Remicade, amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion

Previously on Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
05-05-2017, 06:49 PM   #8
DustyKat
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@ TammyR, My son is on Imuran and Humira and travelled to the US last November. He was able to obtain travel insurance through CoverMore. As you would no doubt know the biggest the bug bear to obtaining travel insurance is if you have obstructions. He has had previous surgery but not within the last two years and not for obstruction.

@Oz lady, just double check about the dosage. Since this is an intital treatment, and after the loading doses, it should be 2 pens a month (one a fortnight).

When first prescribed she needs to be reviewed after 3 months and then an application will be lodged for 6 months approval. From then on application for approval has to be done every 6 months, this means review by the specialist.

When travelling you can obtain 2 months worth of Humira (4 pens) from the pharmacy without issue. If more doses are required special application has to be made.

I hope something is able to be sorted with insurance in the US. Good luck!
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05-06-2017, 08:03 AM   #9
TammyR
 
Join Date: May 2016
Location: Adelaide, South Australia, Australia
@DustyKat that is great news. I've really struggled to find a policy that will cover me. I wanted to go for 3 weeks last month as my daughter had an opportunity to dance over there but I couldn't get a policy to cover me. I had a partial obstruction in November 2016 so that may have played a part.

I've always thought I'll have to declare 'reduced immunity' due to biologics...

I'm determined to stay out of hospital now so that I can hopefully one day be able to take my youngest to Disneyland just as we took my eldest 10 years ago.
05-06-2017, 11:36 PM   #10
Oz lady
 
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Thanks for all the great infomation and links. Lots to look through and I will definately makes some calls.

We know that Disney have on site medical facilities and will also have to ask them if they can/will do her check ups or if she will need to be seen by a IBD specialist ( her Dr is helping us find one)

I will update here when I have more info and hope that it might help others.
05-14-2017, 05:02 AM   #11
DustyKat
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@TammyR, yeah unfortunately it will be the obstructions that are the blocking the approval.

My son declared his reduced immunity, it didn't affect his approval.
05-30-2017, 11:12 PM   #12
Oz lady
 
Join Date: Feb 2017

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Update.....

We are still waiting on the approval for Humira but time is running out. My daughter leaves on 3 August.

We have received the Disney medical insurance paperwork (required cover for J-1 visa) and after I emailed them to clarify, pre-exsisting conditions are NOT covered!!! Therefore no cover for bloodwork, meds, etc relating to Crohn's.

I have been online (my head hurts) trying to find an alternative policy or an additional one which would cover her. So far, I can only find cover for US citizens only. We think she will be classed as a Florida resident for her time there but not 100% sure until she arrives. I'm still emailing people/companies for info on policies.

I would appreciate any info you can give me so we can get her covered before she goes. Thanks
05-31-2017, 04:40 AM   #13
TammyR
 
Join Date: May 2016
Location: Adelaide, South Australia, Australia
Update.....

We are still waiting on the approval for Humira but time is running out. My daughter leaves on 3 August.

We have received the Disney medical insurance paperwork (required cover for J-1 visa) and after I emailed them to clarify, pre-exsisting conditions are NOT covered!!! Therefore no cover for bloodwork, meds, etc relating to Crohn's.

I have been online (my head hurts) trying to find an alternative policy or an additional one which would cover her. So far, I can only find cover for US citizens only. We think she will be classed as a Florida resident for her time there but not 100% sure until she arrives. I'm still emailing people/companies for info on policies.

I would appreciate any info you can give me so we can get her covered before she goes. Thanks
Hi I'm so sorry it worked out this way, I was afraid that it would. I did find somewhere that would insure me with Crohns for a 14 day trip to USA at a cost of over $2,500. Needless to say we didn't end up going
06-01-2017, 01:52 AM   #14
Oz lady
 
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Yesterday the approval came though for Humira. The nurse is coming out next week to start the dose as everyone stated ....I got it wrong. We are hoping that the nurse can help in some way with the USA side of everything regarding meds.

I have emailed Disney about getting our own policy, still waiting on a reply. Unfortunately I can't find any which will cover immunosuppression meds.

@ DustyKat I have contacted CoverMore and they will cover Crohn's but not Humira.
06-01-2017, 09:23 AM   #15
my little penguin
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Tagging Catherine
Can you get your doc to write a script for 6 months or more at a time and just take the humira with her ???
Since it's good for more than a year
She could carry it on the plane cold till she got there ...
With doctors notes etc..,
06-01-2017, 10:21 AM   #16
HolisticHealing
Banned
Where do I start.....

My 19 yr old daughter was diagnosed with Crohn's in early Feb this year. She has been on Aza 100mg since then. Yesterday at her GI appointment, the Dr reviewed her test results and has applied for funding for Humira (Australia PBS) since the inflamation is still high and there has been no change.

The problem is..
She has spent the last 18 months studying so she could apply for for Disney International Exchange Program. She has had an interview and looks like she will start in Orlando in August. This is her dream and a once in a lifetime opportunity.

As yet we don't have details of the compulsory medical/health insurance for her but I am starting to get worried about it all, getting a GI, meds, tests, etc

I have started to do some research but getting a bit lost with it all.

Can anyone help with how it all works in USA especially Florida/Orlando and what options she has? I would be upset for her if she had to miss out on this experience because of her Crohn's. It's been hard on her so far and I can already see her getting down about it.

Thanks for any advice given

Pharmaceutical drugs are not the only option with Crohn's! We need to bring awareness to that fact on these forums!! They do nothing but mask the symptoms and eventually you need more drugs to cover up symptoms cause by all of these drugs. Possibly look into a holistic care/alternative therapy doctor to watch after her Crohn's while she is here in the U.S.?
06-04-2017, 12:37 AM   #17
Jennifer
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Pharmaceutical drugs are not the only option with Crohn's! We need to bring awareness to that fact on these forums!! They do nothing but mask the symptoms and eventually you need more drugs to cover up symptoms cause by all of these drugs. Possibly look into a holistic care/alternative therapy doctor to watch after her Crohn's while she is here in the U.S.?
Medications have helped save many people's lives and do not simply "mask" symptoms. They're used to keep inflammation under control and prevent it.

HolisticHealing I'd like to remind you of the forums rules about deterring members from treatment. This is a support forum first and foremost.

"Here on the forum we share facts with credible sources, personal experiences and offer support. Posts that deter a member from getting treatment suggested by their medical practitioner that they may need is not allowed. Such posts may be subject to editing and you will receive a warning."
http://www.crohnsforum.com/faq.php?f..._new_faq_item3
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-07-2017, 09:47 AM   #18
TammyR
 
Join Date: May 2016
Location: Adelaide, South Australia, Australia
How did you end up going oz lady?
07-11-2017, 04:30 PM   #19
a.velter
 
Join Date: Jul 2017
Location: Gwynn Oak, Maryland
Humira, here in the US, is $2200/shot for 40mg pens.


Disney have their own medical insurance which she has to sign up for so she will have cover but at the moment we don't know what it covers. We have excellent insurance, Bupa Global through my husbands work, but does not cover USA.

Our biggest concern is the cost. Here in Oz through medicare, the humira pens are very cheap. I have read various prices in USA ranging from $5 through a scheme to $2300 for 2 pens and her Dr said she would be on 2 per week!!

Not really sure what we can do for her.
08-10-2017, 05:43 AM   #20
Catherine
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Tagging Catherine
Can you get your doc to write a script for 6 months or more at a time and just take the humira with her ???
Since it's good for more than a year
She could carry it on the plane cold till she got there ...
With doctors notes etc..,
Sorry I didn't see your tag, I have been on the forum for a long time. I wouldn't have been any help. I don't think you would be able to get a 6 month script for humira. You can get 6 months for low class medications eg imuran. I know we did.
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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)
08-10-2017, 06:31 AM   #21
Oz lady
 
Join Date: Feb 2017

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Update

My daughter has now arrived in Florida. The Disney insurance was compulsory but since it doesn't cover pre exsiting we got other cover from Covermore covering Crohn's. Fingers crossed it does what it says if we have to claim. The Humira is working and she got authorised for 6 moths supply to take with her but the prescription didn't arrive in time. We were booked to go over on holiday to see her so I will take the pens over. She has a few with her but will be 1 short. I am hoping that once she is in touch with the Humira nurse they can help with info for everything including applying for the Assistance program when she needs it.
08-10-2017, 07:01 AM   #22
Catherine
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Make sure you can legally take the prescribed medication out of the country for someone else. I can't remember what the issue was but know we couldn't buy prescription medication in Australia and send overseas.
08-10-2017, 09:04 AM   #23
Oz lady
 
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We have the same Gastro doctor (I have UC) and she is going to write me a letter to do so.
08-11-2017, 02:38 AM   #24
Catherine
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This is link we were directed to:

https://www.humanservices.gov.au/cus...s-pbs-medicine
08-11-2017, 03:27 AM   #25
Oz lady
 
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I read up on that before. The GI phoned the relevent people, during her appointment, and told them that my daughter was travelling for an extended period of time and got permission for 6 months to be dispensed at one time. I think it says R24 on the script which was authorised. Our pharmacist knows about this as well.

So permission has been granted to take meds out of the country but due to circumstances, it's me who is taking them.
08-11-2017, 04:47 AM   #26
Catherine
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My biggest concern would be that if she has an obstruction or similar you might be paying full price without insurance. Disney will probably exclude the pre-existing medical condition and Bupa Global not covering USA might be a big problem.

I hope I'm wrong for your sake. I know that I personally won't travel to the USA anymore due to having Crohns and not qualifying for insurance there.
Last time I checked Covermove won't Crohn's if there has been surgery in the last 2 years.

Suresafe wouldn't cover Crohn if there has been surgery in the last 12 months.

Disclaimer:
This advice is general in nature and should not consider personal advise.
08-11-2017, 05:02 AM   #27
Oz lady
 
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My daughter had a colonoscopy in Jan 17 which diagnosed Crohn's and has had no surgery so Covermore covers her pre existing condition....1 yr $2600
08-11-2017, 05:24 AM   #28
Catherine
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We used Covermore as well for Sarah's for 12 month policy for U.K. And Europe.

$700 for the year, using my discount

The US is dearest place to get travel insurance for.

For anyone with there own business I would look at whether a Corporate policy travel policy needs their needs. Corporate travel policies don't normally exclude pre-existing conditions.

It also worth noting that Covernote policy can be extended to a maximum of 18 months. The extension needs to be purchased prior to the expiry date of the policy.

Disclaimer:

This advice is general in nature and should not be considered personal advice.
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