Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Andy Battaglia on March 09, 2008, 07:53:53 PM
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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.
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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.
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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!
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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
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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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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.
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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.
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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
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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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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
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@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.
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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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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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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
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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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Hi Merchant,
I don't have any desferal right now, but if anyone wants to help out and send me some, I will send it along to you.
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thanks
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When Sajid passed away, one of the first thoughts that went through my mind was this thread. Andy desperately pleading with everyone to help Sajid get desferal. Although I do not have access to desferal - because ours is premixed and useless after 6 days - I felt like I failed in saving Sajid.
Andy, you tried so hard to protect him - but the system failed. I hope that we can work together to prevent this from happening to others - as you have mentioned in earlier posts on this thread.
I don't know who to blame, drug companies? politics?
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Sharmin,
I sent him desferal once,as it was easy for me coz we were residing in the same country,but he didn't let me do it again,desferal is not very xpensive here,if some one from out side my country needs it ,cost of desferal itself is not a problem,but international shipping cost or postage is really high.
Zaini.
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Hi Zaini,
I remember you that you had sent him desferal and how reluctant he was to ask anyone for help. He just kept telling us all
that he was fine. I guess I have just been looking back to see where things went wrong and why we lost our friend :( And maybe determine what needs to change in the future. This has been so hard to accept.
My dear, if there were more angels like you the world would be a different place, :hugfriend
Sharmin
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Hi Zaini & Sharmin ,
your posts on sajid makes me fall in his memories .. its pretty much difficult to live without the friend like sajid ... when-ever i read the post regarding to sajid's memories , it hurt's , i still cant believe that a person can leave that much earlier ... a friend and a friendship only for 6months ... cant believe ... he & his memories looks like a sweet dream that ended whhen i woke up ....
Umair
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Asim Aziz, Merchant Hussain,
Do you both now have access to desferal? Please let us know about your situation.
Thank you,
Sharmin
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I want to remind everyone that this is an ongoing plea. Patients need desferal. Many cannot afford enough and others have seen supplies reduced as Novartis removes it from many markets. If anyone has any desferal or Exjade to donate, please contact me. The need is absolutely staggering. We are only beginning to hear from some places like Indonesia and Thailand but thalassemia is widespread in southeast Asia, and the need for treatment is great. Please do whatever you can to help. This is the season of giving, so please think about those so far less fortunate than yourselves.
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Andy,
Because we don't have access to unmixed desferal and exjade is given to us as part of a trial (only certain amounts for certain periods of time) - can we somehow financially contribute to this cause?
Sharmin
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Andy,
I don't have unused desferal but i can buy it,You must know people in neighboring countries of Pakistan who need desferal,like India or Maldives,or anyy othe country which isn't far away,please tell me about a few of them and i'll check it with the post office and tell you if i can arrange to send them desferal,is that alright?
Zaini.
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hi andy,
can i contribute money towards this?....if yes how? can u send me details?
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Please see http://www.thalassemiapatientsandfriends.com/index.php?topic=1742.msg14494#msg14494
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when i was on desferal, and i used to go on holiday to pakistan i used to try to leave any unused equipment eg neeedles, syringes, emla cream (come on that is anasthetic they should be glad of that for anyone)even a pump and desferal there but the doctors kept saying we have no use for these things-ignorance?
If there are any apkistanis that would like me to give them a pump please let me know as i have one nad next time i go to pak or one of my family go i can send to you also syringes and needles.
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Eesha,
I don't know anyone personally right now,but you can gift your pump to Fatimid foundation or Hussaini,as they are doing a wonderful service for thals by providing them free medication.
Zaini.
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Just today I have got to know that Afzaal Memorial (http://afzaalfoundation.org/) is doing excellent work, from transfusion, chelation to endocrine. What else a patient needs :)? A complete Thalassemia Center! specially for the people who can't afford.
I was in contact with their team but today through another doctor I got to know about their services :)
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Laws vary from country to country. However, when it comes to saving people's lives, I feel that moral law has to supersede any country's laws. This is also one reason I stay unaffiliated with any official organization. I have been told point blank from a high ranking official of TIF and CAf that my remaining independent allows me to do things that they cannot do and therefore, I should always maintain my independence.
In the end, it comes down to a judgment of what is more important. Laws or people's lives. I will always choose lives.
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:clap :clap :clap :clap for Andy
I totally agree :exactly :exactly :agree
manal
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Nice stand on this issue , Andy ... *hats off* .... :goodluck
Umair
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hiiiiiiiiiz my bro is using exjade and he throw the desferal in rubbish bin im so sorry
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Please, please please, if you know of any chelation drug not being used and going to waste, please contact me. We have patients who need it desperately and who will use any chelator they can get.
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andy, i think we may have that around now.... many of thals here are changing their chelation to asunra..
but as i have told u earlier and in detail, am not sure how i can arrange this.. to send it to u i mean.. what the procedure is in customs.. etc.. plz pm me on this and i can start collecting.. ..
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Andy, Manal, Zaini, Nice friend-
I cried over this issue when patient from other country just throw away thier unsued pump and desferal because from where i come from it really hard to get one. My youngest will starting his desferal anytime from now as his ferritin is now above 1000 but we have to put it on hold as we don/t have either the pump nor the desferal. as a mother, im asking mercy from other friends here to help us. please donate your unused desferral and pump to us who needed it the most. thank you all.
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My son will started his desperal this coming May ( maybe- still waiting for the Dr instruction on this),
and along with him, there were about 20 kids that will do the very same thing, the Dr already called us and discuss this with us,
She asked us to find the desperal pump ourselves, because the Govt hospital can't provided it anymore.
Lucky me, Canadian family have helped us by giving their pump but i can't be selfish, i can't stop thinking of the rest of the parents that can't afford it, don't now where to find it,. im so sorry for them.
Please.. anyone if you have unused desperal pump,do send it to us.. Further details on shiping just ask me.
Thanks!
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Hi Andy,
I have some unused Desferal medicine and Exjade, please let me know if I can help you or anyone here on the forum.
Please contact me if I can be of any help.
Many Thanks,
Atin