FerriScan : Non-invasive measurement of liver iron concentration

Hi everyone,

I'm Sylvia and I work for Resonance Health, provider of FerriScan.

I understand from reading some of the threads that there are some of you out there with FerriScan enquiries. I'm here to help so if you need any information or assistance on FerriScan, please feel free to drop a note.

I also look forward to forming new friendships here in this forum.

Rgds
Sylvia Goh

Hi Everyone....

Andy has put up a FerriScan Fact Sheet to provide more information on this MRI-based technology non-invasive measurement of liver iron concentration.

The Fact Sheet can be found on: http://www.thalassemiapatientsandfriends.com/index.php?topic=1677.0

Please feel free to contact me if you would like further information. For those in a Thal support group, we are more than happy to send you materials upon requests.

Thank you.

Sylvia

Hi,

Can you tell us about the charges? Although i think it's not available in Pakistan.

It's nice of you to be on this forum.

ZAINI.

Hi Zaini

The cost of FerriScan varies from country to country and it is an additional cost to the standard MRI scanning fee.

Depending on individual country's health system ; some countries provide free MRI scanning faciliities, thus, patients would only pay for the FerriScan component. In some situations, it is also dependent on the reimbursement by the health system/insurer.

For example, here in Perth, WA, a local public hospital decides to fund FerriScan for all their patients. Thus, patients who go to this specific hospital get FerriScan free in their clinical care.

At the moment, our company is planning on reimbursement applications in some identified regions and by obtaining reimbursement, FerriScan service can be made available and affordable to a broader community.

You are right - FerriScan is not yet available in Pakistan. We are actively working on informing and creating more awareness on FerriScan. Do you belong to a local Thal support group in your community? Would you mind sharing your contacts with me?

What I would do is make contact with them and provide further information on FerriScan and explain how the service would assist in the chelation programs. And we will work closely with them should they want to take it forward to provide this service to its members.

Sylvia

Hi Sylvia,



It's really great to finally see someone directly from Ferriscan.

Though I'm just a patient but I'm also an honorary staff member of Jamila Sultana Thalassemia Welfare Trust Islamabad, Pakisatan.

It would be great if some how you can cooperate with us for the benefit of Thalassemics.

Can you kindly tell us what can you do in this regard and what we can do to avail this facility so that I can have a word with my doctors and project manager.

Hoping to get a favorable response from you soon.

Regards.

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.

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.

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. 

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.

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

Hi Sylvia,

Jamila Sultana Foundation is a Thalassemia Treatment center/welfare trust whose costs are covered by Global Pharmaceuticals. Although the owers are same but the J.S.F is managed by a different team. It would be better to contact the Project Manager of J.S.F for anything relating to Thalassemia because the management of Global Pharma. are different and their only concern is the production of medicine.

Today I had a word with our Project manager that FerriScan are interested to provide their services for Thalassemics in Pakistan. To my shock and amazement he replied "What's FerriScan?" I couldn't believe that they(including my doctor) don't even know about it. I can't believe that they haven't been informed by Thal. Society of Pak. or TIF or their own research on internet.

Anyway they were pretty interested when I told them a bird's eye view of the benefits of FerriScan versus Serum Feritin tests and biopsy. The only concern with them is the costs of the process and MRI.

It would be great if you send in some information literature and your offer to the Project Manager via Post on the following address:

Mr. Usman Asad.
Jamila Sultana Foundation.
D-24, 6th Road.
Satellite Town, Rawalpindi,
Pakistan.

Tel: +92-51-4842184

I will also send you an email for a faster correspondence including a cc to his email address (which he rarely checks ).

Hi Everyone

I doing a research at the moment on Thalassaemia Treatment Center in UAE. I found on IronOverload - Middle East website (http://www.ironoverloadme.com/) that there are 6 Thal centers in UAE. At the moment, I can only find Al Wasl Hospital where the main Thalassemia Center resides.

Does anyone out there have information on the other 5 centers? Any information you can provide is very much appreciated.

Thank you.

Sylvia

Hi Sajid

I have just send Mr Usman Asad an email Cc you with regards to our FerriScan proposal. Please feel free to comment and l look forward to hearing back from Mr Asad and yourself.

Thanks.

Thank You ma'am,

I have received your email and have sent a text message to Mr. Usman's cell phone to check his email as soon as possible!

Thanks for your cooperation and quick response.

Hi Sajid

Always a pleasure to help. I hope that all of you in Pakistan would get to enjoy what the other Thal patients get in other parts of the world. We all are the same and no one should be neglected due to their location.

I look forward to hearing from Mr Asad. Take care my friend and let me know if you need more info.

Have a good weekend!