Advice please on how to access IVIG in Canada privately?
AnonymousMay 28, 2010 at 4:55 pm
I dont post much but am often quietly in the background reading the posts and offering help where i can.
I am currently fortunate enough to be undertaking a big trip with my family to Disneyland LA and onto the canadian rockies for 6 weeks in total to visit family we havent seen since I was initially diagnoised with CIDP 3 years ago.
We have had this trip planned for nearly a year now, and wont actually believe we are going until on our way!!
My current hurdle is that i have never managed to space my IVIG treatments more than 3 weeks apart, and i may need to get a wee treatment while I’m away.
Does anyone have any advice on how to go about this – would i be best present to a Doctors practice or hospital etc and about how much it would cost.
The current health system in New Zealand allows for easier access to IVIG than most other countries so until now I havent had to deal with issues regarding insurance funding or accessibility etc so am probably a bit nieve as to what is required elsewhere.
cheers again for your thoughts and suggestions
AnonymousMay 28, 2010 at 7:16 pm
Do you live in New Zealand and will be traveling to USA and Canada?
I am having a treatment on Monday so if you give me more info I can ask at local hospital.
It would also make a difference as to what province you were planning to visit.
I would be happy to try to find answers for you but require more info.
Send me a PM
Rhonda from Canada
AnonymousMay 29, 2010 at 12:28 am
Kathy I think that it will be almost impossible for you to receive IVIG while in Canada unless you are willing to pay up front a very costly amount–roughly $100 CD per gram of IVIG plus the cost of medical day care while it is being administered (roughly $1000 per day). Also, I think your doctor would have to pre-arrange this with a physician in Canada who would have copies of pertinent medical records sent to him by your physician, and in all likelihood the physician here would have to be a neurologist. It gets really complicated that is why we don’t take any trips longer than 3 weeks. I think in the future if my husband and other CIDP patients in BC are able to take subcutaneous IVIG it would be possible to carry IVIG and the supplies to self administer it. But that is still not available here. It is also important for you to have good travel medical insurance for the US and Canada. Unfortunately you will have to declare CIDP as a pre-existing condition, and that will probably rule out getting IVIG as an emergency treatment even. It is all so unwieldly and unfair.
But maybe CIDP patients can get subcutaneous IVIG where you are? If so, perhaps you could carry this with you along with supplies needed with written precription allowing you to carry it with you on the aircraft. Good luck, and you will love Banff and Jasper.
AnonymousMay 29, 2010 at 5:18 am
Thanks Laurel (and Rhonda)
yes Laurel, my neuro thought as much re expense and huge amount of organisation etc. think i will just put head in sand again knowing i can definately get by for 3 weeks and hope that the deterioration from then on is very gradual – and plan for the best holiday ever and if it turns to custard we will just come home a week early, and otherwise expect to have a quiet rest of winter here in new Zealand getting back on track again with extra treatments etc.
AnonymousMay 29, 2010 at 11:57 am
You’re welcome Kathy. I think that it will go well especially if you don’t over do things. I would even consider using a wheel chair at Disneyland as there is lots of walking there. I know if my husband over extends himself it tends to cause a flare up. But I don’t know if I could convince him to use a wheel chair, but I would try my best stern wife approach
. So minimally let everyone know you need periodic rest periods and an afternoon nap would be wise too. Let us know how the trip went please. Sounds pretty exciting to me.
AnonymousMay 29, 2010 at 5:52 pm
OMGosh Laurel -“Dont over do things” is something i am continuously telling myself as I am like a bull in a china shop!!!!!!! (at 200km/hr!!!) wheelchairs and i do not see eye to eye!!! I avoid them like the plague and to even consider using one is almost like admiting defeat to CIDP! (They are definately ranked in my quad status equipment pile – of which i have no intention of dusting off ,again!!!)
I totally understand where you are coming from though, and thank you for your practicle suggestions, I have already had close family members suggest the same – (if it were role reversal i guess i would say the same to my hubby) but even he wouldnt dare suggest it to me for disney land – I guess he understands how traumatic it was for me to go from being so active to becoming fully dependent – and how I am such a stubborn and overly determined (to my own detriment I admit, at times)person. (My biggest current health prob is a stress fracture to pelvis – from a recent half marathon – my 4th one in a year – so have taken heed and did dust off an elbow crutch to allow for proper healing 😉 and have hit the swimming pool instead to keep me sane!!)
The afternoon nap is already on the agenda as kids will need a kip if they want to see Disneyland lite up at night and the fireworks etc.
many thanks again – and looking forward to discovering some of the beauty ofyour country! 🙂
AnonymousMay 31, 2010 at 12:15 pm
Oh, my Half a marathon! you are certainly in a different category than I. I’m lucky to walk half way down the block and back.
A Wheelchair for Disneyland or Disneyworld or Busch Gardens, oh, heck any big amusement park is out of the question (for me).
I always get a battery powered scooter now. Believe me, nobody wants to push you up hill, down hill and all around all day and, I’m certain, if you had the arm strength to push yourself, or to walk it, you certainly would not miss one IVIG treatment while you are gone.
I know the feeling about ‘handicapped’. I also said, “I’m not handicapped, I don’t need no stinking handicapped sticker.” Well, guess what? Maybe you are and maybe you do. So use them.
Just the opinion of a guy who’s been there, done that, and couldn’t do more than 10 reps of almost anything without severe muscle fatigue and cramping.
AnonymousMay 31, 2010 at 9:46 pm
I’m in the same situation as you….I live in NZ, but from Canada so go over fairly regularly to see my folks. Can’t stay longer than 4 weeks, tho, since that is the treatment schedule. I have often worried about stretching things out, and usually am really happy to get my treatment when I get home to NZ.
I have also wondered whether it would be possible to have a treatment in Canada — so, perhaps the subcutaneous is the best way to forward plan as a future option…I don’t know whether we are using it in NZ at the moment…..
I have an infusion tomorrow and Thurs, I will ask!
You will definitely love North America…even tho I am biased, it is great.
You must be logged in to reply to this topic.