Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Sharmin on August 12, 2009, 04:07:54 PM
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Can anyone tell me how one would go about ordering exjade in Canada and how long it takes to get it? We are officially off of desferal beginning today and we are hoping to begin the full dose of exjade now.
Thank you,
Sharmin
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Hi Sharmin,
We get our exjade from McKesson specialty perscription services at 1 888 377 9353 in Toronto. This is a national prescription service so I guess they may have an office in Calgary. Hope this helps.
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Thank you kindly Canadian Family:)
Sharmin
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You are welcome.
Switching to exjade would be a great relief. I remember the daily struggle with desferal but it is all over.
Not sure if you have called them, you would need doctors prescription to order the exjade.
Please keep updated.
Thanks
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Canadian Family,
Thank you so much for your help. Lil A's doctor sent a prescription to the children's hospital pharmacy for us and they are ordering the exjade for us.
Sharmin
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Blue cross rejected coverage of exjade for us. I am devastated. They are telling us to go back on desferal and don't see why we changed. A bruised belly, the emotional trauma, the side effects that he was beginning to experience - thank god they went away after he got off - how can they say that? I don't know what to do, the drug is very difficult to afford without coverage.
:wah :wah :wah
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Sharmin,
Pardon my ignorance but when you were giving Lil A exjade before,was it part of the study? I mean the cost was also covered by hospital? I am sorry i am not much familiar with the insurance system,i just hope that they'll see how important it is for Lil A to get exjade,i pray the problem will resolve soon,is there no way you can convince them ???
Zaini.
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Hi Zaini,
For the past year we were getting the exjade from Oakland - they were mailing it to us. Now we applied for it here and they are causing all kinds of trouble for us :wah :wah Insisting that we go back to desferal. I can't do that. It is difficult to pay $2000 a month for the medication, I don't know what to do.
Sharmin
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Sharmin,
I really wish i could do anything,i am praying that there will be any way out of this,Canadian Family is also giving their daughter exjade,i hope they'll be able to help you out.My prayers are with you :hugfriend .
Zaini.
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Thank you Zaini :hugfriend
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Hi Sharmin,
Solution 1
Exjade is covered under very few insurance plans, I suggest calling Mckesson specialty prescription services at 1 888 377 9353 and discuss your issue with them. You may need to buy another insurance plan if needed (Mckesson can guide you).
Solution 2
Another solution is that call Blue cross and check if exjade DIN# 02287439 (250mg) is covered under your policy, if it has, than they have no right to decline you. If they do; it is a court case, contact a lawyer and threaten to sue them.
I would not give up. There has to be a solution. Please keep us posted.
Regards
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Sharmin,
Little A's doctors have said that desferal has slowed his growth. The drug is therefore, not suitable if another drug can take its place without this serious side effect. This fact alone should be enough to get Exjade covered.
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Canadian Family,
Thank you so much, this information will help us tremendously. I will let his doctor know about it as well.
Andy,
Thank you, I have added this to our list of arguments. His doctor said that he had written the company a letter saying that lil A's iron levels had gotten to dangerous levels and that exjade is what helps to keep it balanced - he told them that it would require toxic levels of desferal to keep up with his transfusion requirements. I cannot believe that they still declined it. The doc will review their reasons for declining and then call them himself.
This is so stressful!
Thank you again for all of your help,
Sharmin
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Hi Sharmin,
The doctor simply have to make the case that desferal is not fit for the child under the circumtances. If there is a case than Blue Cross is liable to approve your claim.
Thanks,
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Canadian Family,
Thank you so much for the information that you have provided. I called Mckesson and they connected me with the Western Canada branch. They have been very helpful, they are contacting our doctor and they are appealing our case with Blue Cross. There is also an Exjade support program available in Canada through which they can help patients.
Thank you again, the information that you have provided has made a world of difference to us!
Sharmin
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Hi Sharmin
You are welcome. We are really glad that the situation is moving in the positive direction. We sincerely hope you win the appeal.
Regards
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Sharmin,
Don't know if the option of mail order is good in your case. In US, companies like Express Script, save money for a lot of people who are on regular medicine providing the prescription to the patient through mail. The mail order prescription companies send 3 month medicine for the cost of 1 month co-payment. Of course, the insurance company should pay the rest.
A quick search showed Canada Drug as an option and I do see Exjade is available.
Website - http://www.canadadrugs.com
Phone: 1-800-226-3784
Hope it helps,
-Narendra
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Thank you Narendra,
We will definitely look into this :)
Sharmin
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Our doctor had appealed Blue Cross's decision - but the appeal was rejected :( They still insist that we have not proven a contraindication to desferal :wah :wah I am so distressed.
Sharmin
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Hi Sharmin,
The contraindication to desferal is essential in your case. Your doctor has to prove that desferal side effects is effecting Little Mr. A's health to a much higher degree than normal (we had to build the same case for little Miss A). It is for the doctor to build sufficient evidence to prove such a case. I am not sure what was presented by your doctor to the blue cross, the proof needs to be strong. My only suggestion for now is to talk to your doctor and ask for the basis of the appeal (proof of contraindication) to desferal. If there is sufficient evidence in your doctor opinion, take your case to next level (file the lawsuit) against blue cross.
In the interest of time, you may want to continue with desferal or import Asunra (atleast six months supply) from South Asia (lot cheaper option) or buy exjade from here.
You know it is all about the money, desferal is free in Canada (covered as part of universal health care system) and exjade is not covered as such. The insurance companies knowing that desferal is a free option, resists the approval of exjade (a lot expensive drug) and demands contraindication to desferal.
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Sharmin,
I hope this issue resolves somehow very soon,of course its distressing,Lil A is doing so well with exjade and who would wanna go back needle pricking every night,rest be assured you are in my prayers always. :hugfriend
Zaini.
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Sharmin, hope we can be of any help in this situation :(, please keep us updated
manal
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Dear Friends,
We have some good news on this front. My husband's work insurance (he began a new job this month) has covered the exjade completely. This is great for us. I do hope to push Blue Cross though because I know that there are many families in the area who are not able to get exjade because Blue Cross has rejected their claims. I also hope that the Canadian govt will pick up some of the cost of exjade, as it does for desferal.
Thanks to everyone for their support,
Sharmin
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Thanks Sharmin for sharing this good news :hugfriend, wish you and the other families all the success in your trails. Try to get many reports from differnt doctors that support your claim so they can be convienced
Good luck dear and congratulations
manal
:congrats
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Sharmin,
This is a topic that should be brought up at the patient portions of the conference. Perhaps we can find some advice to give to others to help them in the never-ending battles with insurance companies.
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Thats great to hear :yes and a big relief :hugfriend
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Great News Sharmin. Congratulations.
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Wow...... Great News , Sharmin... i m glad to hear that the probleme is solved .. :congrats ..
Best Regards
Umair
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as i said before i am a farmancy-seller in greece with not so good spoken english :-\
if you want cheaper exjade send me email to andreas_hotmail.com.
i know that there is big problem with the prices of the medicine because my husband take exjade 500mg
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andreas_kouk@hotmail.com
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Polina,
Could you tell us more about it. How much cheaper? How comes no prescription is required?
Thanks and regards,
Souly
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Polina,
You mentioned that your husband take 500mg of exjade. What is your husband's ferritin and how long he is taking exjade. Is your husband thalassemia major?
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souly
in greece we take the pills in different way.for example my husband is taking exjade from farmacy shop(i have one)and that it is.ALL thallasemia patients must have sales in their medecines from 100%up to 50%.
Canadian_Family
my husband"s ferritin 3 years ago was 4000.he was taking 4 pills every day and the last resaults before a month were 196 :wink
he is taking two pills now because his hurt is clean but it is some iron still in the liver.
i will be glad to talk some day in msn for further informations about the pills...email me
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If your husband is thalassemia major then why are you selling your exjade. The iron keeps building up due to regular blood transfusion and your husband will need the exjade life long.
Ferritin level of 196 does not mean it will stop there, he will need exjade indefinately.
You btw coming on this forum and selling exjade wthout subscription does create lot of questions and I hope you understand.
I am also sensing that you don't know much about thalassemia either.
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Canadian_Family
your sences are wrong.....my husband has thallasemia type b as doctors call it ,i think middle its in english.
he is 39 years old and living with him 6 years i know much(not all) for thalassemia.i dont blame you for your words beacause suddenly a person coming in the site and selling pills.i can order this pills any time and because of his is taking now two pills instead of 4 i have 2 pills every day left.so we decided to give them away to take some money.
as i said i dont know all about thallasemia but living every day with my husbund i understand a lot.this days i understood that maybe we will not having childrens if in the future my husband(he is to tired from all this pills) dont accept to have gel of testosterone with pregnyl and puregon(do you know this mediccines?)...is this enough for you and my knowleghe about thalassemia????????
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Hey Polina,
We are here only to help each other. The thing you probably don't know is that are thals also collect lots of iron when they aren't transfusion dependant or taking iron pills (dont ever do the last!!!). How came your husband's ferritin so high that he had to take Exjade?
We have alll such of those questions in our head when someone sells Exjade because someone is decreasing it's dosage.
It's a normal question. Many of us do know the pain of not having/getting babies/pregnancies or miscarriiges.
Warmest wishes, Dore
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dore
my husband until his 36 years he never took something for the iron because of his bad head first and because he didnt do blood TRANSFUSION(sorry about my english).
he said to me that when he was little until 7 years old his mother didnt know that his son has thallasemia.my husband siad that after a bad flu doctors ditected thallasemia type b.the years after he remember that he made bllod tranfusion few times.maybe less than ten.
at his 30 years old he start taking hydroxyouria and he had bad pains in the bones.he accidently saw his doctor ,doctor said to start therrapy bacause his face color was bad but he left it.i met him at his 36,he did not say to me about thalassemia and in our first vacation because of his bad bon pain he said me about his problem.we went to the hospital,we found a great doctor and he start blood transfusion and exjade.now he is taking two exjade pills,2 hydroxyiuria,1 calcium and a gel called tostran(testosterone).we go every 20 days for blood TRANSFUSION driving 200 km....this is our story...i am to happy for him because he is now too good,he is getting back his power and recently started moto cross again.the only thing that make me sad is that maybe we will not have children....but i will always have my husbund who is a big children...
now about exjade iits a good way to have some money back from this boxes,we are not the richest people...
thanks for listening my story
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Hi Polina,
Your husband would be considered as thalassemia intermedia because he was able to survive without transfusions into adulthood. Please be aware that his iron load built up over many years and is not necessarily seen in the serum ferritin level. He may have iron buildup in his organs, which would require continued chelation at a normal dose. If it is at all possible, he should have liver and heart scans done to assess the level of iron load in his organs. This will help to guide his chelation routine. I know these scans are readily available in Greece, so he should take advantage of this. The lower his iron is in these organs, the better his health will become, and you are already seeing how much he has improved. Please encourage him to get these scans. They are important tools to help keep thalassemics as healthy as possible. He should be in a well managed treatment program where he sees all the necessary doctors and can have his health assessed on an annual basis.
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Polina,
I am amazed you know so little about Thalassemia.
where do you live? Because you said you drive 200 klm to get transfused.
And as for children, in my Thalassemia Unit there are thals who have given birth to healthy children.
The only thing is to chelate regularly, your husband may have heart and liver free of iron but there are other organs too. We have talked about that in other topics. You should do an MRI for heart and liver to confirm how much iron you have in your organs - heart and liver. These exams and many more are readily available in Greece and all thals do it.
Lena.
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souly
in greece we take the pills in different way.for example my husband is taking exjade from farmacy shop(i have one)and that it is.ALL thallasemia patients must have sales in their medecines from 100%up to 50%.
Canadian_Family
my husband"s ferritin 3 years ago was 4000.he was taking 4 pills every day and the last resaults before a month were 196 :wink
he is taking two pills now because his hurt is clean but it is some iron still in the liver.
i will be glad to talk some day in msn for further informations about the pills...email me
WOW, he (with you) did a GREAT job!!!!! He could be an example for all of us! I havent reach such level yet. Im sine 6 year on aggressive chelation therapy, but at the end I will get there too.
:thumbs
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dore
he start blood transfusion and exjade.now he is taking two exjade pills,2 hydroxyiuria,1 calcium and a gel called tostran(testosterone).we go every 20 days for blood TRANSFUSION driving 200 km....this is our story...i am to happy for him because he is now too good,he is getting back his power and recently started moto cross again.the only thing that make me sad is that maybe we will not have children....but i will always have my husbund who is a big children...
now about exjade iits a good way to have some money back from this boxes,we are not the richest people...
thanks for listening my story
Awwwh. Yes I know the problem. I travel around 100km for treatments too. What everyone is saying is that iron while continue to come due his blood transfusion. Thats why he (we) need forever chelation therapy.
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we live in a village near Delphi(ancient place)and we travel about 200 km to athens for transfusion.
my husband do 1 time a year MRI for hurt and liver ( i cant remember the numebers)but his is in very good condition.maybe LENA (she is from greece) to know LAIKO hospital in Sevastoupoleos avenue.
yesterday we made a new check in Eyaggelismos hospital about liver(NOT MRI) and that one was too good also.
fututre MRI is on 20-11-2009 at BIOIATRIKI CLINIC,tomorrow.
About if we are going to get children or not,i must saY that because of his previus high iron,he has now problems with free testosterone,total testosterone and some others .
one thing that is still low is οστεοκαλσινη και καλσιτονινη(LENA TRANSLATE PLS)
i am trying to read new things hear and learn about thallasemia so forgive if i wrote something wrong.
AND something important....a doctor in greece when we first went to hospital,said only:-THIS IS THE SITUATION WITH THALLASEMICS,I CANT DO NOTHING :dunno
HE DID not gave to my husband to do checks,not to do tranfusion,not exjade...can you believe that???????i am still comlaining about him in our new doctor,and do you know why?
before 50 days we lost my husband brother,50 years old with μικροδρεπανοκυταρικη(lena help και εξηγησε στα παιδια οτι ο αδελφος του αντρα μου ηταν απο αλλο πατερα γι αυτο και ειχε μικροδρεπανοκυταρικη)and do you know why?because the same doctor said to him 10 years before what he said to my husbund 5 years before....thats greece....i have pleanty things to say about doctors but i dont know so good english and maybe you bored reading
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Polina asked me to translate in english the words she wrote in Greek:
so οστεοκαλσίνη = osteocalcin
καλσιτονίνη = calcitonin
Also Polina writes in greek that her husband's brother came from a different father and that's why he had sickle cell anaemia.
Anyway, Polina if you ask me I think you met all the wrong doctors- that's not Greece at all. Greece is famous now to have very good thal experts, whom the international community appreciates for their expertise. From what you have written, I can see a lot of things with which I disagree. We are not to make people tired here with all these details, I'll private message you informing you of some basics you don't seem to know, concerning the best exam centers and those which are accepted and follow the general good lines. (not BIOIATRIKI for an MRI that you mentioned).
I understand your bitterness about doctors, thankfully these are not the doctors I have met with.
Lena.
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I am so sorry to hear that. :( My wish is better educated doctors.
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do you know if i can sell 4 boxes unused exjade anywhere????in ebay????
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Are you still on board Polina? I hope so.
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i am on board!!!!!!!!
happy new year!!!!