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FerriScan : Non-invasive measurement of liver iron concentration

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Sylvia:
Hi Sajid

Nice to meet you!

We are delighted to be able to work with you to deliver the FerriScan service to the community in Pakistan. I am having a meeting with my manager tomorrow morning and I would discuss the matter further.

I had done some research and I found that there are probably about 100,000 Thalassaemia Major patients. Would you please advise if this figure is updated? Would you be able to fill me in with a bit more information on Thalassaemia in Pakistan? These are some questions I have in mind:

1) How many treatment center are there in Pakistan?
2) Are there any specific regions which have a higher prevalence?
3) How many Thal associations/support group are there? I have tried contacting Prof Raashid from Thalassaemia Federation of Pakistan and Thalassaemia Society of Pakistan before, however I haven't been successful.
4) What is the current monitoring method used to measure liver iron concentration?
5) What is the health system liked in Pakistan? Does the government pay for part of the Thal treatment or insurers' of patients pay for the treatment cost? Does services liked MRI get subsidised by the health system?

Any information you could provide on the above would assist in my meeting with my manager tomorrow. Feel free to contact me direct at work. My email is sylviag@ferriscan.com

Thanks and I look forward to hearing from you soon.

§ãJ¡Ð ساجد:
Hi Sylvia,

Thanks for your prompt reply I really appreciate it.

Unfortunately I believe the figures for Thal. major and carriers in Pakistan are increasing everyday so the rough estimate of 100,000 could rapidly change very soon. Anyway, getting to your queries:

1) There are more than one in the major cities of Pakistan as you can see in the following list of very well known Thal. Centers of Pakistan.

http://www.tfp.org.pk/memsoc/mes.html

Apart from these dedicated Thal. centers, there are major hospitals that provide Transfusion services to Thals. as well. Like this list does not mention the P.I.M.S and Holy Family Hospital in Rawalpindi (where I live and thus know about them) similarly there are others in the different cities as well which the locals know about.

2) The tribal areas of the North, Sindh (better known as inner Sindh) and Baluchistan are more concentrated due to inner-family marriage trend among the tribes.

3) Thal. Society of Pakistan and Thal. Federation of Pakistan are the two main organizations. They are there but I don't know what they are doing?!?

4) The most commonly used method is the Serum Feritin test while some doctors go for the Liver biopsy when needed.

5) There is no medical insurance here while the Govt. is concerned a little about Thal. there are govt. funded transfusion departments in govt. hospitals like the Punjab Blood Transfusion service that operates in Holy Family Hospital. However, the govt. have poor policies on medicine; they take more than 150% tax on Desferal. It should cost a fraction of the price that is available in the market.

6) MRIs are available but I really don't know if there is any other way where the patient does not have to pay (or pay a fraction of the cost involved).

However, I would like to applaud the efforts of Global Pharmaceuticals (The parent of Jamila Sultana Foundation) who provide completely free treatment to all of the patients including covering the cost of tests (hopefully Ferriscan too if you can provide your best offer). They are striving hard to make it as easy as possible for the patients by covering their costs and even making their own Deferiprone and eventually Deferoxamine to totally make Thalassemia a cost free manageable disorder in Pakistan.

Thanking you for considering us to make Thalassemia manageable for everyone.
Regards.

Sylvia:
Hi Sajid

Thanks for the info.....they are very helpful and I will bring them to my meeting tomorrow.  I will keep you posted on the outcome.  :jumping

Zaini:
Thanx Sylvia,

For being so help ful,I belong to the city of Karachi,and we got to AGA KHAN HOSPITAL here for our daughter's transfusion,it's a very well known and well kept hospital,according to the international standards may i say,they don't provide free medical care,but i do know some hospitals who do,like Bismillah Taqi institute of Blood diseases,it's also on karachi and they are providing medical care and medicines either free or on very minimal charges.They also perform Bone Marrow transplant,and as far as i know they were the first one to introduce hydrea here.

THANKS AGAIN.

ZAINI.

Sylvia:
Hi Sajid

I had a discussion with my manager today with regards to offering FerriScan in Pakistan. We are all excited of this new opening and I had to research for further information to put a proposal together.

You have mentioned that Jamila Sultana Thalassaemia Welfare Trust is a project of Global Pharmaceutical. I would like to clarify if Jamila Sultana is a center where Thalassaemic patients get their treatments or is this a trust that provides funds towards patient's treatment?

Would it be appropriate if we contact Global Pharmaceutical directly? If it is, would you please provide me with the contact person's details? I would definitely Cc you in the email to keep you in the loop as you were the initiator.

Also, would you be OK if we contact some of the haematologists whom you know? Would it be OK if you share your contacts with me? We have scientific paper on FerriScan which they might be interested in.

You may email me direct at sylviag@ferriscan.com and please let me know which is the best arrangement to take this futher. Thanks :)

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