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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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There's some good news, some bad news, some more bad news and more and more...
« on: April 23, 2008, 04:35:06 PM »
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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Offline Sharmin

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Re: There's some good news, some bad news, some more bad news and more and more.
« Reply #1 on: April 23, 2008, 05:22:45 PM »
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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Offline Andy Battaglia

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Re: There's some good news, some bad news, some more bad news and more and more.
« Reply #2 on: April 23, 2008, 09:16:42 PM »
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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Andy

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Offline KHALIFA

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Re: There's some good news, some bad news, some more bad news and more and more...
« Reply #3 on: April 23, 2008, 09:38:15 PM »
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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Offline Canadian_Family

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Re: There's some good news, some bad news, some more bad news and more and more.
« Reply #4 on: April 23, 2008, 11:48:38 PM »
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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Offline Andy Battaglia

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Re: There's some good news, some bad news, some more bad news and more and more.
« Reply #5 on: April 24, 2008, 12:09:01 AM »
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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Andy

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Kathy11

Re: There's some good news, some bad news, some more bad news and more and more...
« Reply #6 on: April 24, 2008, 12:15:01 AM »
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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Offline Sharmin

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Re: There's some good news, some bad news, some more bad news and more and more.
« Reply #7 on: April 24, 2008, 12:40:44 AM »
I think 18,000Rs. would be around $450. 
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Offline Manal

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Re: There's some good news, some bad news, some more bad news and more and more...
« Reply #8 on: April 24, 2008, 01:02:02 AM »
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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Offline Andy Battaglia

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Re: There's some good news, some bad news, some more bad news and more and more.
« Reply #9 on: April 24, 2008, 01:18:24 AM »
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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Andy

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Offline §ãJ¡Ð ساجد

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Re: There's some good news, some bad news, some more bad news and more and more.
« Reply #10 on: April 24, 2008, 05:01:29 AM »
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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Offline Maako

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Re: There's some good news, some bad news, some more bad news and more and more...
« Reply #11 on: April 24, 2008, 07:59:20 AM »
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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Maako
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Kathy11

Re: There's some good news, some bad news, some more bad news and more and more...
« Reply #12 on: April 24, 2008, 08:12:36 AM »
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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Offline Zaini

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Re: There's some good news, some bad news, some more bad news and more and more...
« Reply #13 on: April 24, 2008, 10:28:51 AM »
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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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: There's some good news, some bad news, some more bad news and more and more.
« Reply #14 on: April 24, 2008, 10:59:06 AM »
: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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