There's some good news, some bad news, some more bad news and more and more...

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Offline §ãJ¡Ð ساجد

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I just want to thank everyone who are making generous offers to send me some Desf.

The thing is that currently I am getting the half dose from my center and I can get the remaining half from the market. So, there is no emergency yet.

Don't worry; when I need Desferal, I will ask for it directly without hesitation! :biggrin
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Sajid,

We just like to remind you once again that we are here to help whether emotional, financial or in any other form. I understand lot of members here are ready to help. Please let us know immediately if you are required to compromise your chelation therapy in any way. Keep us updated and posted on the desferal situation.

Regards.

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Offline jade

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Hi Sajid

you are facing such a difficult situation.May God help you. I guess that it is the same case for all thals in Pakistan.  I truly hope that your situation improves soon.

Novartis should realise that if it goes for market segmentation that is sell exjade to those who can afford and sell desferal to others, this will lead to a greater profit for itself, since others who cannot afford exjade will not buy it at all even if it is the only medication available on the market.  And above all that stopping the supply of desferal is inhuman.  Sure they are on the market to make profit but they have chosen a field which concerns the life of people.  what about their corporate social responsibility and ethics? This can sully their image( they should be made to realise this).

My prayers are with you.
Jade

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Offline Andy Battaglia

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Novartis is a huge multi-national corporation with many divisions and makes billions of dollars in profits annually. The people involved in research and development of new drugs are in no way involved with marketing and pricing. Whereas the researchers have worked for many years to develop Exjade, they have no input on pricing and little if any input about the decision when a product should be brought to the market. We have heard before that Exjade was delayed for many years until the patent for desferal expired, so that Novartis could maximize the profits on desferal production. Once the patent expired, Novartis was given fast track for Exjade and within two years of the expiration of the patent for desferal, Exjade was approved. Is it cynical or merely realistic to believe that Novartis intentionally delayed the oral chelator? This delay cost the lives of many patients who could not tolerate desferal.

There is nothing in any of this history to suggest that the marketing people at Novartis care one bit about the value of human life. There is plenty to suggest that they do care very much about the value of a dollar. This is typical of the giant pharmaceutical companies, which are part of the most profitable industry on earth. How many dangerous drugs have been marketed and sold to patients as safe, when the drug companies buried evidence that would show the dangers? How many patients have died from using various drugs that the companies knew were not safe, but after doing the calculations, it was determined that the profits would exceed any cost for future law suits?

There are many evil people in our world and whether they are making decisions for drug companies or auto companies, who knowingly use inferior parts that they know will cost lives, but are cheaper to produce, the results are the same. The consumer suffers while others get rich off the decisions that have been made which show no regard for human life. Lives have no value to them. The calculations they make include the costs of lawsuits and payouts when they lose these suits, but do not include a single penny for the value of a life. This is how the system works and it makes one realize exactly how courageous the actions of Cipla are to produce drugs and sell them at cost. This flies in the face of the policies of most companies and also many political leaders, such as George Bush, who fervently believes the market should determine medical costs, rather than having the value of human life enter into the calculations. Mr Bush, you're wrong, as usual. Your sick mind is disgusting.

I know I strayed off topic a bit but we really can have no expectation that Novartis will do anything but base their decisions on profits. I have no doubt that the decision by Cipla to market their own version of Exjade had much to do with the decision Novartis made to market Exjade under the name, Asunra, so that they could get a market share established before Cipla was ready to introduce their own version.
Andy

All we are saying is give thals a chance.

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Offline §ãJ¡Ð ساجد

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Novartis is nothing more than an empty hype.

When I asked our project manager about the generic deferoxamine he was all like: these are inefficient, allergic and side effect causing substandard cheap products. I was thinking about the people who are allergic to Desferal; perhaps they think about Desferal in the same way... but there is no use convincing these corporate kind of people :-\ even though my doctor was pretty interested to try the generic version if it can suit the patients.

However, our project manager has given us a ray of hope that they are trying to make their own version of good, clean, efficient, side-effect free "Generic Desferal." (Ya, like that's gonna happen; even Paracetamol has side-effects). I guess he will only be satisfied with the generic that they make themselves. :dunno
اَسّلامُ علیکم Peace be Upon you
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Offline nice friend

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Sajid i can u join me in chat room i m waiting  4 u there ..plz come
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Sajid,
when I was in London they did not have the novartis broand most times and I was always given the generic brand available. It didnt seem to have any side effects although I did not use the dosage properly. :(

I dont know if you can tolerate it but I was told, and am living proof, that the combination therapy is the BEST solution for iron overload, especially if its the heart. The only problem is that you have to do weekly tests to check the neutrophil counts which is VERY VERY important.

Please try and get an opinion, from all the presentations seen, its the best way

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Offline Sharmin

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How are you doing Sajid?  Are your levels stable?  Please keep us posted, and don't hesitate if you need anything at all. 
Sharmin

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Offline §ãJ¡Ð ساجد

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Hi Umair,

Sorry, I must have logged off. The online member info remains for about 15 min even after we wander off to other sites.

Hi B Thal Girl,

Indeed, combination therapy is the optimum solution with L1 and Desferal. While Exjade/Asunra hasn't been tried yet here with Desferal. As for the neutrophil; yeah it's an issue seen with some users of L1 and it's the reason I'm not on it add to that my thrombocyte count that hover between 100-150 X 10003. :(

Hi Sharmin,

I'm doing good. Just a little low on Hb. perhaps due to quality/quantity issues of last transfusion. I get 50% of Desferal from JSF and the remaining has been gifted to me by a very very very... kind soul :biggrin

Thanks everyone for your concerns... You guys are the best :grouphug
اَسّلامُ علیکم Peace be Upon you
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Offline asim_aziz

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Hi sajid remember what i told you on the phone about the ALT thing i just reconfirmed it from mr usman today.
*Sigh* now my Xbox360 memories haunt me. And i imagine watching it run away with legs :D
in the race to be the champion there no finish line.

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Offline §ãJ¡Ð ساجد

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Hi Asim,

I still like to play it safe. Asunra is still new and haven't been throughly tested on older patients with complications like mine. Hey, I'm just afraid to put my *almost* 27 years of struggle on the line. I've been through a lot and the last thing I want is a new medicine messing what is left of my (not so healthy) life.

Besides, just like you said, you're sacrificing your console for limited supply of Asunra. The price is just waaaay too much to consider a regular use of Asunra. :dunno
اَسّلامُ علیکم Peace be Upon you
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Offline asim_aziz

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@sajid yeah i agree you should play safe because your ALT is high. And yeah asunra price is still VERY VERY HIGH. The price for 1 month suply of asunra is nearly the price of an xbox360
in the race to be the champion there no finish line.

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Offline §ãJ¡Ð ساجد

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 :biggrin

You sure love your 360. Buddy, stick to Desferal. I know getting Asunra is a thrill but you're going to do it for a month or so only and you will have to eventually come back to ol desf. Don't put your passion on the line if it is not a permanent switch.
اَسّلامُ علیکم Peace be Upon you
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Offline asim_aziz

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@sajid you are right but if it helps to control my dangouresly high iron like the exjade did i am willing to sacrifice my console. Beside hopefully i can save up for it again like i previously did . Consoles come and go but life doesnt
in the race to be the champion there no finish line.

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Offline Zaini

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My idea is that you should start exjade or asunra when your S.F levels are not dangerously high,beacuse we have seen that when patients start using exjade,S.F first goes high,with already too much iron in the blood,i think it can be dangerous,why don't you try combination therapy?

ZAINI.

P.S what is your ferritin level?if you don't mind?
^*^Xaini^*^

 

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