Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: Ayesha on April 26, 2008, 01:33:23 PM

Title: Umm, Good News? Yeah I guess so :)
Post by: Ayesha on April 26, 2008, 01:33:23 PM: Hello & Asalaam o Alaikum everyone..

I hope you all must be doing great, I haven't post any thing from a long time... but here I am

with something to share with all of you....

Today we (me & Salman) went for Transfusion, and as many of you guys remember that Zaini told you guys that few days ago Novartis representatives were there for Exjade details and today while talking to doctor he gave me a paper about Asunra (Exjade) price, here it is:

Tab Asunra:
100 mg: rs. 77 per tab (rs. 2312 (around 38 dollars) for pack of 30 tabs)
400 mg: rs. 308 per tab (rs. 9248 (around 154 dollars) for pack of 30 tabs)

To get your dose you have to multiply your weight with 20mg, for me and Salman doctor suggested 1000 mg per day, that makes 2 tabs of 100 mg and 2 tabs of 400 mg... that makes rs. 1540 (around 25 dollars) for per day... rs. 46200 (around 770 dollars) for one month :|

After listening to this I said I will wait for the day when Novartis would reduce its cost.., ofcourse its not affordable for us... never mind.

Before getting discharge, I saw the representive in doctor's room, I met him and he tried to convince me... but I couldn't get convince... but then he told me that Novartis has reduced Asunra's RATE :|, here is the detail I got from him:

Tab Asunra:
100 mg: rs. 48 per tab
400 mg: rs. 192 per tab
(He forgot to tell me the details of pack)

If suppose I have to take 1000 mg per day, that makes 2 tabs of 100mg and 2 tabs of 400mg: which is rs. 480 (around 8 dollars) per day

Now 480 x 30 = rs. 14400 (around 240 dollars) per month!

that makes 14400 for me and 14400 for Salman, altogether makes rs. 28800 (around 480 dollars)! woah ;d, ehehe..!

Contact Details:
Novartis Pharma
15 West Warf Road, Karachi

Office: 92-21-2203115

Dr. Naeem Jalil (I met him): 0301 - 8260988
Dr. Naz: 0300 - 2556809

Thats all for now ;)

Best of luck!
Take Cares, Allah Hafiz!
-ayesha
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: §ãJ¡Ð ساجد on April 26, 2008, 02:37:24 PM: I just have to say it:

:frustrated
It's INSANE!
:frustrated
Title: Re: Umm, Good News? Yeah I guess so :)...Novartis, shame on you!
Post by: Andy Battaglia on April 26, 2008, 04:50:48 PM: On one hand, Novartis should be congratulated on their efforts to put an oral chelator into the hands of those who previously have not had access. It is another thing to price it out of reach of most patients. If it ended there, we could accuse them of nothing more than being a tease. However, when they simultaneously begin to withdraw the alternative chelator, desferal, from the market, leaving many patients with NO chelator, it goes far beyond tease and becomes a serious moral issue. First, and Novartis is more than aware of this fact, not all patients can tolerate exjade. Novartis, please tell us what to do about patients who cannot use your drug and patients whose ferritin levels are too high to make exjade a practical chelator. Second, even with this greatly reduced cost, compared to the west, the cost is still far out of the reach of most patients.

Exjade as one option is fine. Exjade as the only option, is not. Novartis, please correct this major flaw in your planning.
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Ayesha on April 26, 2008, 09:18:29 PM: Well, the first question I asked Dr. Naeem and the doctor who told me about exjade cost was: why the hell desferal is getting disappeared by Novartis? do you guys even know what you are doing? There are many people who won't be still able to afford Exjade and who knows it suits them or not? Even I can't afford it right now... so for GOD SAKE don't do anything stupid...

But Dr. Naeem said: Novartis hasn't done anything like that, why would that happen? if you want desferal you can buy it directly from our company on cost bit lower than pharmacies, rs. 1535 for 10 vials, around 25 dollars.

But then again I don't agree with him... why can't Novartis do that? company would like to have more profit.., by selling exjade they can earn more...

And doctor (not dr. naeem) but some other doctor has confirmed that other companies are going to launch Desferal soon, and according to him Cipla *India* will launch it soon and it would be cheap....

my words for Novartis: Go to hell :)!

when will they understand that millions of people's life are in their hands.... can't they stop their stupidity???
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Kathy11 on April 26, 2008, 11:15:38 PM: :clap :clap To Aysheha.

Thank-you,
The lesson I have learnt from this post is "never again to complaint about the price of my meditions".

For the life of me I don't know why the leaders of this world is not concern about this abuse of humanity instead of spending money on war to kill more humans, Why dont they preserve lives ??? ??? ??? ??? ??? .
Kathy
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Zaini on April 27, 2008, 10:07:30 AM: Hi Ayesha :)

It's good to see you posting :hugfriend :hugfriend can you tell me from where are you getting your desferal? and on what price?

ZAINI.
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Ayesha on April 27, 2008, 11:55:38 AM: hey Zaini...

Well am getting my desferal from Fatimid (we are still registered patients over there) at rs. 50 per vial :)

what about you? from where you buy desferal and on what rate?
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Zaini on April 27, 2008, 12:05:28 PM: That's great,

We are getting it for rs 80 from open market,what do we have to do to get registered there?

ZAINI.
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Ayesha on April 27, 2008, 12:08:27 PM: rs. 80 is reasonable too, Zaini me and salman have been the patients of Fatimid from more than 20 years, am really not sure if the registration are still on or not... and I don't think that only for desferal they would register any one... am not sure...:s
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Zaini on April 27, 2008, 12:16:34 PM: yeah i know that,

Wasn't asking for myself though,have a friend here in karachi,they are in dire need,so i though it might help them.

Thanx :)

ZAINI.
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Ayesha on April 27, 2008, 12:22:59 PM: Ohkay, I guess your friend should visit Fatimid and see if they allow registration :)!
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: nice friend on April 27, 2008, 01:53:59 PM: ASLAM-O-ALYI-KUM
well ...Dr sugest 9 tablet a day for me ..it was prety expensive when frerriprox was Rs70 per tablet . but now pakistan ICI is providing Ferriprox at very low price as low as Rs 34 ..i have pasted the adress where you can buy it
yours truly
nice friend
ICI Pakistan Limited

P.O.Box 4731 ICI House
5 West Wharf Karachii - 74000
Telephone 021 2313431 - 22
Fax (021) 2313431
Fax (021) 2311739
UAn 111-100-200
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Ayesha on April 30, 2008, 11:57:37 AM: Okay Friends, Rani(PK) has asked me to post a question on her behalf and here it is:

Has anyone started using Asunra? If yes.. then whats the result? did you feel any difference? or felt any side effect?

Kindly let us know..!

Take Cares, Allah Hafiz
-Ayesha
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: nice friend on April 30, 2008, 09:23:54 PM: AOA
hummmm....
hahhaha..as many thals boycot the exjade due to it's pric it novartis will reduce exjade's price within few months.... i hope realy soon .....
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: nannu on May 01, 2008, 07:55:19 AM: Yesterday iwent for transfusion for my cutie pie in pgi chandigarh.There I came across news about oral chelator desvorix . cost is 24/tab for 250mg tab & 48/ for 500mg tab which comes to about Rs3000/mth for 50 Kg patient. GOOD LUCK
Quote from: Ayesha on April 26, 2008, 01:33:23 PM
Hello & Asalaam o Alaikum everyone..

I hope you all must be doing great, I haven't post any thing from a long time... but here I am

with something to share with all of you....

Today we (me & Salman) went for Transfusion, and as many of you guys remember that Zaini told you guys that few days ago Novartis representatives were there for Exjade details and today while talking to doctor he gave me a paper about Asunra (Eame across notice from cipla e i cxjade) price, here it is:

Tab Asunra:
100 mg: rs. 77 per tab (rs. 2312 (around 38 dollars) for pack of 30 tabs)
400 mg: rs. 308 per tab (rs. 9248 (around 154 dollars) for pack of 30 tabs)

To get your dose you have to multiply your weight with 20mg, for me and Salman doctor suggested 1000 mg per day, that makes 2 tabs of 100 mg and 2 tabs of 400 mg... that makes rs. 1540 (around 25 dollars) for per day... rs. 46200 (around 770 dollars) for one month :|

After listening to this I said I will wait for the day when Novartis would reduce its cost.., ofcourse its not affordable for us... never mind.

Before getting discharge, I saw the representive in doctor's room, I met him and he tried to convince me... but I couldn't get convince... but then he told me that Novartis has reduced Asunra's RATE :|, here is the detail I got from him:

Tab Asunra:
100 mg: rs. 48 per tab
400 mg: rs. 192 per tab
(He forgot to tell me the details of pack)

If suppose I have to take 1000 mg per day, that makes 2 tabs of 100mg and 2 tabs of 400mg: which is rs. 480 (around 8 dollars) per day

Now 480 x 30 = rs. 14400 (around 240 dollars) per month!

that makes 14400 for me and 14400 for Salman, altogether makes rs. 28800 (around 480 dollars)! woah ;d, ehehe..!

Contact Details:
Novartis Pharma
15 West Warf Road, Karachi

Office: 92-21-2203115

Dr. Naeem Jalil (I met him): 0301 - 8260988
Dr. Naz: 0300 - 2556809

Thats all for now ;)

Best of luck!
Take Cares, Allah Hafiz!
-ayesha
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: §ãJ¡Ð ساجد on May 01, 2008, 08:00:03 AM: Just wanted to tell everyone to keep the exchange rate of the rupee between Pak. Rupee and Ind. Rupee in mind.

Currently it's about 1.6 PKR for each INR. So that's 60% difference.
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: nice friend on May 01, 2008, 11:25:59 AM: hi nano
i have questions abt i m writing to u here the Q's.........
what is the chemical name of desvirox ( deferiprone or defroxamine )?.
which company making this one drug ?.
take care bye
umair
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: Zaini on May 02, 2008, 08:03:30 AM: Hi Umair,

I think nannu is talking about desferasirox aka exjade aka asunra,but the one he is talking about might be the version made by an indian company Cipla,that's why they are cheaper then the rates namitha told us.

ZAINI.
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: nannu on May 05, 2008, 07:57:46 AM: Ur right ZAINI, Keep smiling
Quote from: ZAINI on May 02, 2008, 08:03:30 AM
Hi Umair,

I think nannu is talking about desferasirox aka exjade aka asunra,but the one he is talking about might be the version made by an indian company Cipla,that's why they are cheaper then the rates namitha told us.

ZAINI. :biggrin
Title: Re: Umm, Good News? Yeah I guess so :)
Post by: merhcant hussain on May 13, 2008, 08:36:51 AM: hi ayesha h ru plz send me this detail on my hot mail id plz
ok bye take care