Send Me Your Unused Desferal

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Offline Andy Battaglia

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Send Me Your Unused Desferal
« on: March 09, 2008, 07:53:53 PM »
I would like to request that any patients in the US who have unused stocks of desferal because they have switched to Exjade, or for any other reason, to please send it to me. I used to get regular donations of desferal but these days it's getting harder to find and I would like to keep the supply chain flowing. If you have any extra, please contact me and I will send shipping instructions. Thank you.
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: Send Me Your Unused Desferal
« Reply #1 on: March 15, 2008, 06:03:08 PM »
I am going to try and regularly post a reminder in this thread, as the need for desferal is great. In past years I had fairly regular donations of desferal that I was able to pass along to patients in need. Since the introduction of exjade, these supplies have become scarce.

Please send me any unused desferal that is not past the expiry point. I will also take donations of exjade and make sure that only patients who are under proper medical supervision receive it.

I'll do the hard part of getting it to the patient, even when it means tremendous hassles from Customs agents, and great expense to myself to pay for travel.  All I ask is that someone sends me some supplies.
Andy

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Offline Andy Battaglia

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Re: Send Me Your Unused Desferal
« Reply #2 on: April 23, 2008, 09:14:47 PM »
It seems strange but I never get any response to this thread. However I am once again going to put out an urgent appeal. Our moderator, Sajid is in desperate need of desferal. Please, please, please, if you have any desferal or know of anyone who does have some they don't need, contact me ASAP!

I am so disheartened when I hear that patients behaved like sheep and brought their unused desferal back to their center (where it is likely destroyed) rather than donating it so that other patients can survive. I will be frank. Screw the rules. Patients need this to stay alive. So which is more important? Some asinine rule that you must returned all unused desferal to your treatment center so they can dispose of it or helping save the life of a fellow patient????? Lisa started this by sending desferal and needles around the globe and this is one area where the funds for postage are there whenever needed. I can make it happen but you do need to supply the desferal.

This is urgent so please do contact me!
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Send Me Your Unused Desferal
« Reply #3 on: April 23, 2008, 10:03:13 PM »
Andy,

I wish we had extra desferal - but we receive it pre-mixed and by prescription each week. 

Can we help Sajid financially?  Can we help him purchase exjade until his condition stabalizes? 

Andy, please let me know how I can help Sajid.   

Sharmin
Sharmin

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Offline Manal

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Re: Send Me Your Unused Desferal
« Reply #4 on: April 24, 2008, 01:11:00 AM »
Andy, i can buy desferal for Sajid from here and arrange to send it by DHL as here in Egypt medicnes can be sold without doctor's prescription. Would this be suitable??
manal

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Offline Andy Battaglia

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Re: Send Me Your Unused Desferal
« Reply #5 on: April 24, 2008, 01:20:00 AM »
Manal,

This may work but I do hope Sajid will also contact Hospira because realistically, this will be a much bigger problem than Sajid. Many patients in Pakistan will be adversely affected by this and a long term solution is also needed.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Send Me Your Unused Desferal
« Reply #6 on: April 24, 2008, 09:59:08 AM »
Is sending medicines through courrier or post is possible? i am really sorry i didn't know about sajid's problem,and as i am the same country,i'll see what i can do.

ZAINI.
^*^Xaini^*^

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Offline asim_aziz

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Re: Send Me Your Unused Desferal
« Reply #7 on: May 12, 2008, 10:38:13 PM »
I am afraid we all are suffering from this problem me and sajid get desfrol from same place but now they only give 12 desfrol for a 2weeks and the situation is pretty bad here. @manal how much do they cost in egypt? Maybe we can pay you and you send desfrol for us
in the race to be the champion there no finish line.

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Offline Manal

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Re: Send Me Your Unused Desferal
« Reply #8 on: May 13, 2008, 12:12:28 AM »
Hi Asim

In Egypt , the ampule is for 8 Egyptian pounds, this is the price i know from two or three months ago. Let me check tomorrow ( as it is 3 am now ) as we had a raise in prices in Egypt this week and i don't know if they are included or not. I will confirm the price tomorrow.

The exchange in currency link is on

http://www.xe.com/ucc/


manal

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Offline Andy Battaglia

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Re: Send Me Your Unused Desferal
« Reply #9 on: May 13, 2008, 02:42:14 AM »
I think patients need to find desferal from another company. Keep pressuring Hospira to take care of the market in Pakistan. I posted the contact info in an earlier post in the thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=1658.msg13759#msg13759
Andy

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Offline asim_aziz

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Re: Send Me Your Unused Desferal
« Reply #10 on: May 13, 2008, 11:40:07 AM »
@manal please check the price and post here. And whats the price of 1 box of desfrol?
@andy that will take time but the problem is we have nothing right now exept for 12 vials for 2 weeks.
in the race to be the champion there no finish line.

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Offline Manal

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Re: Send Me Your Unused Desferal
« Reply #11 on: May 13, 2008, 10:10:14 PM »
Hi Asim

It is still the same price. The box has 10 ampules and the box is for 80 Egyptian pounds. The ampule has 1/2 gram.

manal


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Offline Poirot

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Re: Send Me Your Unused Desferal
« Reply #12 on: June 28, 2008, 12:22:38 PM »
Desferal is going off patent soon and I believe that Cipla, the company that makes Kelfer despite the threats from Ciba-Geigy (now Novartis), is planning to launch a generic version of the drug soon. That should make it available at a far cheaper rate and without shortages. I will see if anyone at Cipla can give me an update.

Also, I believe that Cipla is planning to launch a generic version of Exjade in India - however, given the changed patent laws in India, they are looking at as to what rules they can use to do this. Getting the govt of India to say that Exjade is a life saving drug, and compulsory licencing is required is one such step. Keeping a close tab on this front ....

Novartis is such a jerk of a company - they gave us a presentation about how they are launching Exjade (called Asunra in India) at a different price compared to the rest of the world, and it is still 3-4x more expensive than an equivalent dose of Kelfer. And, going by their documents, it seems like Exjade has a lower chelating power per gram, compared with Kelfer.

I hope Cipla comes through with their version soon.

Poirot

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Offline Andy Battaglia

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Re: Send Me Your Unused Desferal
« Reply #13 on: June 28, 2008, 05:07:47 PM »
We have previously posted a link to the story announcing Cipla's version of Exjade and included a link to the original article, whcih can be found at http://www.thehindubusinessline.com/2008/04/01/stories/2008040150910200.htm

Poirot, please do keep us posted on further developments. Also, in our continuing campaign to help the Maldivian thals, we are beginning to take steps to try to bring some form of Exjade to the Maldives, as it is still very disappointing to see how many thals there are either not chelating at all or under-chelating. Poirot, does Cipla only sell kelfer within India? What I want to know is there any chance that Cipla's version of Exjade will be made available to the Maldivians, who would still find the price of Novartis India's Asunra to be prohibitive?

Our thread about Exjade in India can be found at http://www.thalassemiapatientsandfriends.com/index.php?topic=1458.msg11891#msg11891
Andy

All we are saying is give thals a chance.

Re: Send Me Your Unused Desferal
« Reply #14 on: July 19, 2008, 06:08:19 AM »

Hello andy i am merchant hussain.I need a desfarl if have a unused desfarl so sent me.If u have a unused desfarl so tell me i will give u my address


Thanks. :smiley

 

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