Exjade finally in Pakistan.

Hi Everyone,

We went for zainab's transfusion today,and doc told me that exjade is being launched in Pakistan by the name of Asunra.He gave me the numbers of Novartis people.I called there and they confirmed that the shipment has arrived and all the details will be available on monday.By the way what's the per day price of Exjade in U.S or anywhere around the world,because according to Novartis rep,she told me that it's 90$ per day in other countries,she was not sure about what would be the exact price here in Pakistan,but she assured me that it would be below 13$  she was a Novartis rep otherwise i wouldn't have believed her.Anyways it's definitely a good news,but let's see what's the exact cost is and if it still fits in our pockets.

ZAINI.

Exjade is at least $100 per day in the US.

Hi,

Yep, it's the same thing that I mentioned a couple of weeks ago; but my concerns about it still remains.

Zaini,

I think it depends on the dosage of exjade. e.g. my daughter is taking one tablet of 250mg per day and it is costing us $700 per month, when she grows the dosage would be more and the cost will increase. So if you are taking 500mg it would be $1400 per month and I think for a grown up the cost could go up as high as $2800-3,000 per month if they are taking 1,000 mg each day.

Thanks.

Its a very gud news that exjade will be available in pakistan. I want to know when it will come to India...? I hope it will come soon.

Hi everyone!

Today our Project Manager told me he could have gotten it a few weeks ago (when he told me about it) but now, Asunra is launching officially at the mid of this month and Novartis reps will come to give a presentation about it at JSF this week and are looking forward to completely switch from Desferal to it. The burning issue we face is the price! If Novartis completely stops Desferal production then poor patients would suffer a lot I know Asunra is about 10X cheaper than Exjade but it is still expensive than Desferal.

Let's see what happens

Sigh.

I wish something could be done, it would be highly unethical for Novartis to discontinue desferal which I am pretty sure they would avoid doing it. I think Desferal will remain to be an option for most patients in Pakistan. I know it is an option for pateints in Canada even though we have Exjade available. The problem is the cost of exjade even if it is supposedly $13 per day still high for many many families.

Sajid,

Don't listen to the doctors, sometimes they get excited but I am sure Novartis is not looking to discontinue the desferal.

Thanks.

No Way!!!

How can they do that,they can not stop desferal production,not in country like ours,where people can't even afford desferal sometimes,you know each vile of desferal costs 185 Pakistani rupees,which means nearly 3 U.S $,it's company operated price,and if we buy desferal on this price it means it will cost us 72 $ per month ( if we do desferal thrice a week,and i try to do it four times a week),and even this is very expensive for us,a short time ago my husband discovered that desferal viles were available for Pakistani rs 80-85 in a particular market,we started buying it,when we searched about how it comes cheap they told us that it's not company regulated,it's smuggled or something,i don't care if it's smuggled,it's very hard for us to buy desferal on company operated price,and i can't compromise on chelation,my daughter's life depends on it,we buy ferriprox for Pak rs 7700,nearly 125 U.S $ per month,and it's very hard for us,sometimes i think about switching to kelfer but there are always availability issues present with kelfer,and someone told me about chelox,and they say it's same ( deferiprone)If any one of you know about it please inform me,because it's way cheaper then ferriprox.

Sometimes it's very hard to cope with everything,financial issues tie your hands,i call thalassemia a manageable disorder,but I KNOW how hard it is to manage it due to these monstorous drug producing companies.

ZAINI.

I don't think Novartis would stop supplying desferal as not all patients can use exjade or L1. Also, Novartis no longer holds exclusive rights to desferal, as the patent ran out several years ago and other companies do manufacture desferal.

Well mid March is not the dooms day for Desferal but they are gradually doing it and it will take years before Desferal is completely out.

JSF has direct links with Novartis and they told us that their priority is Exjade/Asunra now. They have been providing less Desferal ever-since Exjade came on the scene. We are getting less Desferal than we require and that too comes a month or two late even the payment has been done in advance!

Novartis is not serious about Desferal any more

Also, Novartis no longer holds exclusive rights to desferal, as the patent ran out several years ago and other companies do manufacture desferal.

Which other companies Andy?

ZAINI.

Hmm....

We had a posts about the Generic Desferal on this thread:
http://www.thalassemiapatientsandfriends.com/index.php?topic=795.msg6037#msg6037

We can't find any here in Pak. but if Novartis no longer hold the rights, then perhaps Global Pharma. can make it for us. So, where do we get the recipe from?

Spies in Novartis, please contact me

 

I wish global pharma would think about it,it will make desferal cheaper and more easily available,and once they are determined to do so,getting the recipie would not be a problem i guess.

ZAINI.

Hi,

I have got a question, i recieved wheat grass super shots today,how and what dose should i try with Zainab? or shall i try it at all?and should i be looking for any side effects while giving it to her? Do i have to be more watchful for her iron while she is taking wheat grass? in how much time i'll see any difference,i don't think it would stop transfusions,but if the duration between transfusions is increased, that would be a big relief.

ZAINI.

Wheatgrass supershots are perfectly safe. There is no iron content at all. The recommended dose is one 5 ml shot per day (one capful). They can also be used with any and all other supplements and medications. The full effect of wheatgrass takes up to a year to see, so be patient.