Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: Poirot on June 22, 2006, 08:00:05 AM

Title: Exjade in India
Post by: Poirot on June 22, 2006, 08:00:05 AM

I was talking to a doctor yesterday at my transfusion centre, and she said that Novartis is willing to import Exjade and provide it to those thals who were not on L1. This would be some kind of a special import since the drug is not yet licenced in India .... so, there is an option for anyone who wants to switch from Desferal.

BUT, there's a catch and it is a BIG one ..... the cost. Novartis plans to charge about $1,000 for a month's treatment. US$1,000!!!!!! Even reasonably well-off thals in India will not be able to afford that price tag. Meanwhile, they have applied to the Indian FDA and their application is in process. They expect to launch it commercially in 2007.

What a farce........
and, thank goodness for Cipla.

Poirot

Title: Re: Exjade in India
Post by: Ash on September 26, 2006, 02:13:24 PM

lol Sahil, Poirot stays in Amchi Mumbai, he takes transfusion with me at Indian Red Cross

Title: Re: Exjade in India
Post by: sahil on September 26, 2006, 09:00:39 PM

Hello Mr.Vazirani I have heard about you a lot. Its good to communicate with you. I take my blood transfusions at Nanavati Hospital (Vile Parle). I am also the member of Mumbai Thalassemia Society. hope to be in touch ......

Take care....

Title: Re: Exjade in India
Post by: namitha on October 12, 2006, 02:22:35 PM

Hi,

I am waiting for Exjade and hoping like crazy for an early release. Kelfer does not agree with me and desf is a pain (literally). Sahil, do you know if a doc called P G Natarajan is still around at Nanavati.

Regards,
Namitha

Title: Re: Exjade in India
Post by: namitha on October 13, 2006, 02:57:27 PM

Hi Sahil,

Yes, he is the one. Someday I will tell my story on this forum and my connections to Dr PGN.

Take care of yourself.

Regards,
Namitha

Title: Re: Exjade in India
Post by: Shikha Mitra on October 13, 2006, 03:09:39 PM

well.. me to have very good memories of my association with Dr. Natarajan.. he was the first person who had told me 25 years back, that he would do the CVS sampling, by sending our samples to England.. those days CVS was not done in India...

shikha

Title: Re: Exjade in India
Post by: namitha on October 14, 2006, 03:00:57 PM

Hi Shikha Aunty,

Glad you know PGN too. He too sent our samples to Oxford for testing. He had suggested to my parents that they can have another baby so I could get a BMT (this was about 20 years back). But what to do, my parents did not heed his advice and now I am the single kid facing this nuisance.  :wah

Regards,
Namitha

Title: Re: Exjade in India
Post by: namitha on October 18, 2006, 12:03:00 PM

Hi Sahil,

I really wish I had a sibling so I could have got that BMT and been ok. Anyway, what's done is done.

Regards,
Namitha

Title: Re: Exjade in India
Post by: namitha on October 25, 2006, 06:53:45 AM

Hi,

The great Drug Company 'Novartis' can enable import of Exjade. It costs Rs. 70,000/. Even HIG folks would think twice before having it exported. Oh by the way, I must mention that thals are dying like flies in Bangalore. Not many can afford Desferal. It's not just the cost of Desf alone that deters people, but also the cost of the paraphernalia like tubing etc plus the cumbersome mode of delivery. Well, we have kefler available, most  kids cannot tolerate the drug. So the result: die like flies. No problem, this is an 'third-world, underdeveloped country' where money is the best language. We have a population of 1 billion, it really doesn't matter if a few die here and there. Best way to reduce the population!!! Even Thomas Malthus would approve!  :mad

Thals are desperate for Exjade to be made available in India. It seems to be the only hope for now. But who cares? Is the govt. or the drug company bothered that the potential market itself is dying out. Nope!  :mad

Sorry for the rant. People have to know this.

Regards,
A very angry Namitha  :mad

Title: Re: Exjade in India
Post by: sahil on October 25, 2006, 09:57:55 AM

This is the BIGGEST Reason Why Our Government SUCKS......  :bat

Title: Re: Exjade in India
Post by: namitha on October 26, 2006, 07:51:46 AM

Hi Sahil,

You said it man! It's the way we all feel. Maybe sometime all thals should get together and take off to Delhi and stage a protest a la Naxal style while Parliament is in progress :evilplan

Take care and peace!

Namitha

Title: Re: Exjade in India
Post by: SalD on October 26, 2006, 09:53:16 AM

Sounds like an excellent idea Namitha!  Take your friends and families too, and have some props to attract television coverage (maybe a giant bag of pretend blood on one of those poles - sorry, don't know their names).  Make other people share your anger!    :cheer    Go get 'em!  :five

Title: Re: Exjade in India
Post by: namitha on October 26, 2006, 10:31:08 AM

Hi Sal,

Thanx for the support. Going to the media is a good idea especially to draw attention to the issue of politics of health. If exjade doesn't get to India soon, I sure am going to the political capital and creating a racket  :mad

Thanx again!

Regards,
Namitha

Title: Re: Exjade in India - Launching in Aug 2007
Post by: Narendra on March 07, 2007, 05:43:47 PM

Looks like Finally, the dream tablet(Exjade) is making it's move in India. The launch date is 5th August 2007

Details at http://www.hemato-onco.com/august07.html