Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: §ãJ¡Ð ساجد on April 23, 2008, 04:35:06 PM
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O.K first the GOOD NEWS!!
JSF can arrange Asunra for me :yaaaaaay
Now the series of BAD NEWS :(
It's available ONLY on self finance basis; so even the lowest dose for my weight will cost me a fortune every month and makes it impossible for me to take it for long as the price is variable with the price of the U.S $ and it keeps going up sky high. Currently it would cost me about Rs. 18,000 per month at the lowest starter dose of 20 mg/kg.
The next bad news (thanks to the availability of Asunra) is that Desferal is now less available and my Desferal quota is reduced to half. Novarti$ want$ to make $ure that everyone eventually $hift$ to A$unra :mad
This automatically leads to another bad news that the Desferal that was once available in the market to be purchased is now also starting to disappear. So I won't eventually get the remaining half dose of Desferal from the market. :-\
Finally; since the last several weeks I only got half of my Desferal dose from the market which seems to be causing an increase in the Iron overload. I would randomly get increased pulse with many beats missing and get really nauseous and light headed. My doctor is so much worried about my Iron overload and I would have to look into this heart condition seriously, but it's a bit hard to do it as I just can't tell my mom yet about it.
Things are getting gloomy here with all these issues and what this country is coming up to and to add to that; it's really hard to tell my mom since my dad passed away in the same manner (heart disease).
I need all the prayers I can get from you guys. Let's see what happens in the near future.
:-\
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My gosh Sajid,
I hope that you are able to get the chelation that you need. This is a very difficult situation - who can you turn to in this situation - is there a thalassemia organization there that can help you? All the best Sajid. I feel for your mom - because I know how she feels - please let her know that there are some concerns - because I would want to know if my son was having these troubles. She loves you and you shouldn't go through this alone.
Take care,
Sharmin
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I have posted about this in another thread but I will do so here also. Please contact me if you have any unused desferal. I will make arrangements to get it to Sajid, so please contact me ASAP if you can provide any quantity of desferal.
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Dear Sajid am realy feel sorry for all the thallasimic i wish i have some to send it but the hospital took from me all the desf. also the pumb couse they need it for another thallasimic .. i don't know how i can help i wish i have this factory to make desferal and send it free for everybody he need it :( wish all the best for you
:khalifa
kuwait
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Dear Sajid,
I am deeply disturbed by the situation you are facing, you are one of the most valuable members of this forum and we wish you the best. I think the disappearance of desferal from the market and availability of Asunra is intentional and there seems to be few people trying to fatten up their bellies with the situation. This is disgusting and shame on those who play with other peoples lives. I am really hoping you find the permanent solution for your chelation. Have you thought of L1 with the half dosage of desferal you are getting from the hospital (i.e. combination therapy) to compensate for the missing dosage of desferal.
Regards
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What Novartis is doing here is just sick. They know full well that not all patients can use Exjade, and for that reason alone, they should keep the supply flowing. I am afraid they are planning to get patients to switch to Exjade and then they will raise the price. Sajid, please keep up on your chelation. We will find a way to get you some more desferal.
It's a totally disgusting shame that a company can base the price of their product and the supply of products on what their view is of what a patient's life is worth to the patient.
Sajid, either contact Hospira directly or have your center contact them and plead with them to supply your center and all centers in Pakistan with deferoxamine (desferal). They absolutely do make it (I had some in my hands last week). Perhaps if the situation is sufficiently explained to them, they will see that there is a continuing market for desferal.
Care Pharma International (Private) Limited
37, C.P. Berar Society (Ground Floor)
Karachi
Pakistan
Phone: +92-21-4935243
Fax: +92-21-4130592
Email Address: carepharma.int@gmail.com
You can also contact Hospira through a form at http://www.hospira.com.pk/english/contactus.aspx but I feel you may have better luck contacting the local distributor. be persistent and don't take no as an answer.
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Dear Sajid
I'm sad to hear what is happening with your medication.
Could you please e-mail me and I would also Like to know the conversion of R18.000 in comparison to au/$
Much love Kathy
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I think 18,000Rs. would be around $450.
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Dear Sajid
I am really so frustrated and feel helpless. But there is one thing that i can do which is buying you the desferal here from Egypt and sending it to you by DHL. Here in Egypt we can buy medicne without doctor prescription. So i can get it any time with any quantity. Let me know if this suits you.
Manal
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The international currency converter is at http://www.xe.com/ucc/
The cost for that dosage of Exjade would be about $295 AUD per month. That dosage is more of a maintenance dosage. The dosage required to make an impact on iron overload would cost about 50% more.
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Thanks for your generous offers and kind words.
One thing I forgot to mention that my doctor does not want me to take Asunra for my high ALT levels (around 270-280) Although I don't know if it matters or not but still she wants to play it safe; That is of course AFTER I can afford it.
Andy,
Thanks for the local numbers of Hospira Dist. in Pakistan as I had used the Hospira Online contact form only to receive an email after a week or so telling me to contact again at the telephone/fax email Hospira in U.K: (couldn't they have just forwarded my query :mad )
I will try to convince Hospira for Desf. meanwhile I'll be hunting every drug store and try to cough out Desferal from other Thal. centers as well
Once again a BIG :thankyou everyone! for your kind words and generous offers. All I need is your prayers for now
:grouphug
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Sajid,
this is absurd, the way these companies keep playing with our lives so they get maximum profit in the end.. i feel so sad for u.. be strong, insha Allah it will be alright..
andy, when u see this, could u contact me? either email of msn.. i think i can help...
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Thank-you Sharmin.
This is sacrilege. :mad :mad :mad. I'm shock, that is, a lots of money for poorer people to afford, its more than a person earn a month, in some country.
How can anyone justified the costs especially when most thal patients depand on the drug for their survival.
Sajid I hope you do get what you need god bless and take care.
Kathy
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Sajid,
You are so precious for all of us :hugfriend i am tryin g to do what i can do for you,We just can't afford to loose you.
ZAINI.
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:grouphug
Thanks everyone!
Looks like our prayers are being answered. I've asked our project manager (of JSF) about Hospira's generic Desferal and he replied that he is aware of more than one company that makes generic Desferal but the problem with them are their side effects; such as local irritation and blurred vision etc.
However! Global Pharma. will soon be able to make it's own generic Desferal in the upcoming months. So, lets hope they get it as compatible as the one that Novartis makes with little or no side effects.
Keeping hopes high! :thumbsup
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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.
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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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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.
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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
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AOA
Sajid i can u join me in chat room i m waiting 4 u there ..plz come
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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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How are you doing Sajid? Are your levels stable? Please keep us posted, and don't hesitate if you need anything at all.
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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
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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
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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
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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
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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.
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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
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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?
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Zaini,
Does Zainab use Exjade? I am considering consulting with the drs in Oakland about Exjade during our visit.
Thanks,
Sharmin
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No Sharmin,
Zainab has not started exjade yet,although my husband wants to start it and even doc at the hospital asked us to,but i took Andy's advice,her ferritin level checked previous month was 1350,i want it to be lower then 1000 before even thinking about exjade,she is taking ferriprox thrice a day,seven days a week and desferal thrice a week.I'll keep going like this for a while.
Personally what i think that exjade being relatively new drug,i'd like to play it safe,sometimes kids can't explain properly what they feel,adults can understand their own position,
Best of luck.
ZAINI.
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@zaini yes you are right my faratin is 3-4 thousendish goes up and down in this range. Last time i used exjade with 2 desfrol daily result was my iron before was 3000 something then it got to 4000 and all of a suden got down to an unbelivible 1800. My doc said it hapened with other petiants too the iron going up and then coming down