Thalassemia Societies in Malaysia

Info from:- Sarawak Thalassaemia Society - http://www.thalassaemia.cdc.net.my/index.html

Thalassaemia Association of Malaysia
Website - http://www.tam.org.my/
105-2 Jalan Kg Pandan, Taman Maluri, 55100 Kuala Lumpur.
Tel: 03 - 9857688

Penang Thalassaemia Society  (ROS2900/88PP)

Room CO 38 – 39 UP, Kompleks Masyarakat penyayang

Jalan Utama 10450 Penang .

Tel/Fax : +604 2272133

Email : penthal@streamyx.com

Website : www.penthal.org


Johore Thalassaemia Society
Lot 5395 Jln Kurniawati, Kampung Kurnia, 80250 Johor Bharu.
Tel: 07 - 3320369

Kedah Thalassaemia Society
5017 (1st Flr) Taman PKNK 05200 Alor Setar, Kedah.
Tel: 04 - 7307140

Malacca Association of Thalassaemia
777B Jalan Kesidang 3/11, Taman Kesidang, Bacang, 75200 Melaka.

Perak Thalassaemia Society
190 Persiaran Bercham Selatan 26, Taman Sri Kurau 31400 Bercham, Ipoh, Perak.
Tel: 05 - 5468476

Kuantan Thalassaemia Society
c/o Mr. Wong Cheng Wah
48, 2nd Floor, Jalan Gambut 25000 Kuantan, Pahang.
Tel: 010 - 9877131

Sabah Thalassaemia Society
Website - http://www.sabah.org.my/scss/thala/default.htm
c/o Pathology Dept
Hospital Queen Elizabeth, 88586 Kota Kinabalu, Sabah.
Tel: 088 - 218766

Dear Friends,

Do we have anyone in the forum from Malaysia, Kuala Lumpur to be precise. I would like to know more about hospitals in KL treating thal patients, blood transfusion facility and thalassemia support groups operating in KL. I have an opportunity for an assignment in KL and may have to relocate there for 2-3 years and the quality of medical facility in KL is going to be a key consideration in my decision making.

Regards,
Himanshu

Dear Himanshu,

I am a Thal Patient but unfortunately i am in Kedah. However i might be able to help you on this. In Kuala Lumpur (KL), there are a lot of hospitals that have Thalassaemia treatment centers. I suggest you go to either Hospital Ampang Thal center under the supervision of a very dedicated Dr Jamilah or you can go to Hospital Kuala Lumpur (HKL) and look for Dr Hisyamshah.

Both of them works closely with Thalassaemia community and the government. I hope this info helps.
FYI, treatment centers and facilities in big city like KL is up to standard. You might want to expand out throughout the nation to get a clearer picture of this situation because most of the places outside KL doesn't have a treatment center for Thalassaemia and most don't even have a doctor specializing in Thalassaemia/Haematology.

Good luck with your project.

Nur

Thank you Nur. Can you please also help me with the cost of transfusion in KL. In case you don't know the exact cost even an approximation will do. What about availability of chelation medicines? Are the brands like Asunra (Exjade) , Desirox by Cipla, Defrijit by Sun pharma easily available?  Some of them may be sold under a different name in Malaysia. Which medicine do you take for chelation and what is the cost of the tablet?

Regards,
Himanshu

Himanshu,

I don't know the cost of transfusion in Kl. I can only guess it costs around RM10 for treatment. The blood filters are supplied by the hospital. For chelators, we mostly use Desferal, Exjade by Novartis and L1/kelfer. I don't know the cost because the hospital provides it.

I am using Exjade for almost 4 years now. Chelators are easily available and most of it manufactured by Novartis. Other brands are not available here.

May I know where you are from and are you working in the health industry?


Nur

Hello!

I'm a patient currently getting my treatments in Pusat Perubatan Universiti Malaya (PPUM) located in Petaling Jaya, quite close to the city centre. This is a semi-governement hospital hence the cost of treatment is not as cheap as the government hospital but not as expensive as the private hospitals. The treatments are also more convinent than the government hospital as there is less people here. Usually, there is always a long wait at the government hospital.The cost of blood transfusion is RM80 per session. I'm not sure what the policy is for foreigners but since I'm a member of the Thalassemia Society of University Hospital (THASUH) there is a RM50 refund for each session.

The medicine Deseral is also given for free to Malaysians but it is very easily available! So are the other medicines like ExJade, Ferriprox..
I know that Exjade cost a lot, according to the doctor, a person my size (165cm, 50kg) will need to spend approximately RM5000 a month.
Therefore, I choose to stick to Desferal. I usually get my prescription during my transfusion and just run down to the pharmacy and get my desferal. Pretty quick and simple.

If you would like to know anything more. Do not hesitate to ask!

Thank you
:D

Dear Affiah,

Would it be too much if I ask you to find out if the hospitals have a different policy for expats and can an expat be a member of Thalassemia society in Malaysia, may be you can do it during your next visit. I shall also try to write to the hospital and see if they respond.

And yes I am shocked to hear the cost of Exjade - 5k a month is like costing a fortune. Isn't Exjade also available at a subsidised cost in your hospital? Nur is currently on Exjade and she may have a better understanding of the cost.

My daughter is currently on 250 mg of Desirox which is available at a reasonable cost in India. The mere thought of giving desferal sub-cutaneous to my daughter sends shivers down my spine. I can imaging the pain many of you have gone though when oral chelation medicines were not avaiable.

Looks like this will prove to be an encumbrance to my taking up the assignment in Malaysia.

My best wishes to your for your world tour.

Regards,
Himanshu

Hismanshu,

It definitely isn't too much to ask. I will be going for a visit somewhere next week. I'll post the information I get here.
You could email the hospital or the association Thalassemia Society of Hospital University (THASUH). www.thasuh.org

Apparently I've been told that there isn't any government subsidy for Exjade. However I'm not quite sure about the procedures, cost. I've been dependent on Desferal since I was a child. I think it was more painful for my mum to pin me down and put it on for me as I was always a naughty child :P However, with age, I do not feel any pain of an injection. Especially around my stomach area.

I will ask for you the cost of desirox for an expat.
I'm pretty sure it is also at a reasonable cost.

May I know how old is your daughter?

Thank you for your kind wishes

Affiah Hew.

Thanks Affiah, My daughter is just 16 months old. I hope some medicines are available at a reasonably low cost. I have to submit an estimate of the  thalassemia management cost in Malaysia internally within the organisation. If the cost is within acceptable range then my movement to Malaysia could become easier.

Best wishes,
Himanshu

Hello Hismanshu!

I write today with some news. My nurse told me there is another thalassemia patient in my ward from India. Apparently, once a year he returns to India to stock up on his medicine as it is quite expensive here. He buys a one year supply and brings it here.
The approximate cost of a transfusion is RM165 per session.

I'll try and get his contact number and perhaps you can get in touch with him and discover the way he manages his thalassemia in Malaysia.

Anything else you need to know let me know!


Best wishes,
Affiah.

Thank you so much Affiah for the information and I am really grateful to you. It would definitely help if you can get me the contact number of that Indian family in Malaysia. I definitely owe you a treat now.

Best Wishes,
Himanshu

Hi Himashu,

I'm from Malaysia bur can't advice you on the transfusion and chelation details a I' only HBH. I don't transfuse unless i need it.  I would agree with bringing the drugs from India.  What I want to add is you never ask anyone to post it to you because it get caught in customs and at the end of the day you don't get it back.  Getting drugs and supplements via post is no-no in Malaysia.  If you need it buy in in India and if you have friends or relatives visiting you in Malaysia, get them to help you to carry it in by plane for you.

Dear Gwftan,

This is really a useful piece of information as I was considering getting medicines through post also as an option. I think I would be better off stocking up medicines for a year than buying it there or getting it by post. My understanding says that regular transfusion and chelation are the only two things to be taken care of in the initial years. Thank you all for your help.

Hope to meet some of you there in case I happen to relocate.

Best Wishes,
Himanshu

Hi Himanshu,

You are welcome.  I actually receive the info read it among those who post it here too.  It just happened I had considered buying supplements on the internet too, so I'm just sharing the info around. 

I bet you would met some of us here once you are in Malaysia.  However for me  I'm just 2 1/2 hours away from KL.... by plane :-)   I live in a state called Sabah, beautiful place with mountain and sea.  You should visit it if you're here.  We have 2nd busiest airport after KLIA.

Regards,
Gracia

I'm sorry for the late reply! I just finished a very important exam + my laptop brokedown 
No worries, there is a Thalas workshop this Sunday and hopefully I will meet the indian family!
 

Gracia's home is definitely beautiful! Haven't been there so much myself but every single time it was amazing.

I will let you know soon!

Loves