About iron chelation and transfusions....

Hello everyone...
Just out of curiousity I would like to post a few questions....
About transfusions-
How much is the cost of blood transfusion wherever you all are?
How much do you need at what interval?
How much time does it take each time for the transfusion?
About chelations-
Are most of the newly diagnosed patients put on oral chelators as opposed to desferal?
What is the cost of oral chelators?
How much does a pump cost for those on desferal?

Now what prompted me to put these up were our experiences here.
As of now my son receives 200ml RBC at 4 weekly intervals. The cost of the whole hospital experience for the day of transfusion inclusive of the CBC and cross matching and doctors consulting etc is about 800 RMB. The time of transfusion varies but on an average takes 2 and half hours for this amount.
My son has been on desferal for the past 2 years. Desferal (Novartis)costs 61.5 RMB per bottle(0.5g). Here they offer a scheme that when one purchases 20 packs of Desferal(i.e 20x10) they give a pump free. So I have never had to purchase one and got to know if it must be cheaper in China compared to elsewhere....

Regards,
Madhavi

Madhavi,

I'll talk about things in Greece.

1. I do not know the cost of blood transfusion as we do not pay-our health system along with our state insurance does and to be frank I have never asked.
2. Personally I need a blood unit every 15 days- more or less, depending on the Hgb-but generally speaking this is the interval for me.
3. In the hospital I am transfused we get IV chelation before our transfusion, so I need one whole morning there. In other hospitals where chelation does not take place, 2-3 hours for one blood unit is adequate.
4. Combined therapy in Greece  is the most usual and evaluated chelation method and all patients follow it-with all possible variations of course.(Fe-desferal, Fe-exjade, Fe only, desferal-exjade,desferal only, exjade only- the monotherapies being very few.)
5. Ferriprox costs 300 Euro per bottle of oral solution, desferal costs 46 euros per packet of 10 vials, exjade is the most expensive and costs 1000 euros, but all are paid by our health system. The cost of the pump defers. I am able to tell you only the cost of my pump, the cronojet pump, which is around 1500 euros, again depending on the ml of the syringe. This is also paid by our national health system.


Well, if I were in China I would get one pump every month as I order 20 packs of desferal each month.

Lena. 
 

Thanks Lena....
It is nice to know that your health system covers all this....Wish it were so back home in India!I am sure others would agree....
Yeah...you bet! Pumps for free is a good thing....maybe other countries should also be chosen for this!
Madhavi

Madhavi,

Lil Z goes for transfusion every four weeks,and each transfusion including hospital charges,filter etc cost us 9000 PKR,As for chelation when she was on desferal we used to get the cheaper one which didn't come in packaging,and it cost us 85 PKR per vial.We bought our pump fpr rupees 3800,and ferriprox was initially 7700 rupees per bottle but then when Asunra was introduced they cut the price to half,3400 rupees.Go figure.

Now when she is on Asunra,a box of 400 mg Asunra cost us 5760 rupees and a boz of 100 mg Asunra costs 1440 rupees,and she is currently on 600 mg,meaning 1 box of 400 mg and 2  boxes of 100 mg.And that all is apart from hemotologist's visit,every month tests,and the supplements we buy for her.

Hope this helps.

Zaini.

Thanks Zaini....
For those in countries where their health system covers costs is ok...What about those who have to manage on their own...
It is not so easy to get on with the expenses ...
I wish I could be of help monetarily to those who cannot really manage...but unfortunately we have to attend to matters of our own at the moment...but lets see what the future holds...
Madhavi

Aslam-o-Alakum and hello to all of you
my son saad is 6 year old, in pakistan he is Registered under Thal. Society of Pakistan…. Where blood transfusion is free of cost. Also here I like to mention that for iron chelation desforal is available at very low cost for those patient who use the Society pumps at Center. And the patient who have their own pumps it cost 70 to 85 rupees it depends at stock availability.
Most of the times my son got allergy soon after or during transfusion. So his doctor advise the transfusion (RBC) after wash with normal sciline (in our slang language we say Glucose) Allhumduallah now he is safe form allergy.
In Pakistan two types of Pumps Available No 1 Made in Pakistan it  cost very less… No 2 Made in Italy..
Now come to Oral Chelation.. the information of Zani is Right. For Oral Chelation only one thing i like to mention here, that the mose ecnomical medicine for oral chelation (ASUNRA) is available in Pakistan... in other countries its launched with the name of EXJADE...only difference in its name and strength... in pakistan only 400mg and 100mg availabe but in other countries different strenghts available....

Well, as for here in the Philippines nothing is free even if you have health insurance, Blood alone cost a lot of money, excluding the cross matching and hospital works. Desferal is the cheapest here about Php. 350/vial but the pump is around 15 thousand Pesos.  Exjade is around Php. 803 per 250ml tablet and 600+ per 125ml tab and the Ferriprox cost a lot expensive because there's no retail you have to buy it by bottle it cost around Php. 10000.Transfusion time /length depends on the hematologist. Some may stay a the hospital over 3 days but when we had our transfusion we had a fix stay of 1 night and a day. That's why here in country Thalassemia is known for " "sakit nang mayayaman"or illness for the wealthy people in English.Funny cause mostly of the Thalassemic here are not at all that  wealthy. We are just lucky that my dad works abroad and have the sources to research and buy meds and equipment at a lower price compared here in our country.

Thanks Mumtaz and Lyanne....
Are there thal associations everywhere where people who are in difficulty can be helped?
I am glad you are lucky Lyanne wrt your dad working out...but why does it take so long for the transfusion? No wonder it is called the rich mans disease...you have to spend time and money-both are precious!
Mumtaz, about the saline. Surprisingly, when I was in India it wasnt practised with the hematologist I went to. But it is done so here, and maybe that also helps to actually use up all the blood in the transfusion set! No wasting of treasured blood or should I say expensive blood!! Sometimes it also helps to kill time when we wait for the blood to be brought from the blood bank by the nurse-because they start the infusion for a while before as well if there is too much delay! For the transfusion reactions, I think they would be giving iv atropine as well....
Regards,
Madhavi

Aslam-o-Alakum and Hello,
I think that all over the world there is a THA. Society. As I am working in Saudi Arabia I planed that my family visit to me here in Saudi Arabia. At that time I checked that in Saudi Arabia (KSA) also having THA Society of Saudi Arabia, so pls. check I am sure u will find some solutions. Also as I asked the doctor of my son what is the reason to wash RBCs with normal sciline, she replied that, during separation RBCs there are chances that small quantity of White blood cells and other blood elements will be there, which may cause Ellery to my Son. This is the reason she advise to wash RBCs with normal sciline(Glucose) as here in Pakistan filler cost is high. If u need any further information pls. feel free to contact with us….. may GOD help in ur all problems
there is a suggestion if u like to help the THAL kids in pakistan by sending them the gift of PUMPS which u got free with every 20pack purchase of desferol most well come  i will send u the detail. As my last vacation i noticed that most of the kids spent whole day in THAl daycare center to inject Desferol by Pump... aslo inshallah at my this vacation i planned to buy few pumps with the help of my friends and gift to those kids who r not abale to buy ... so pls. consider my suggession i will send u complete detail and address of THAL Society of Pakistan 

As of now I am not sure how long my son will still need to be chelated. But once we can be sure about where he stands, I do intend to see what I can do about getting cheaper pumps here in China for the benefit of others who need them back home and anywhere else....
I havent got too many pumps because we have been on chelation only for the past 2 years now...  But I will definitely do something about it at a later date...I promise! I owe that much to myself and this world!
About money, fortunately we are not in the need for any help but of course the fact that we will be going in for a BMT does put a considerate amount of constraint on the coffers! ...That is why the delay in the extending of monetary help to those in need!
I had heard of thal societies in India as well... maybe they were more of what this site is doing now....only on a larger scale here... because they helped people cope and learn too by way of meeting and sharing information... and of course with medicines and pumps...
Thanks again for your reply Mumtaz....
Khuda Hafiz for now....
Madhavi

Hi Madhavi! well, I guess because some hema are still new to this disorder..... that they are on trial and error. As for our experience of bt well my pedia then calculated to have 8-12 hrs of bt to lessen the reactions of blood transfusion. And because we used to transfused 2 bags( 500 cc/per bag) of blood.

This is really long time for a transfusion,we usually leave at 7 in the morning coz there are so many patients always,we get admitted at 8 and transfusion starts after weight,height and Blood pressure assessment and canulation,almost around 10,Lil Z gets 450 ml blood every time,so usually we get free around 1 or 2 PM,unless there is something wrong with the flow of blood and they have to inject the saline with it.

Zaini.

Hi Zaini.... yeah it's different here. you even have to be admitted to the hospital. They don't allow outpatients to have a bt. 

Reading about how doctors in different countries or maybe just different places deal with the same disease/therapy makes one realise how varied their approach is...sometimes I think that would also influence how a person and his or her family deals with it too...because if it is presented to them in a negative way they would be let down and feel like it is the end of the world. I guess that is why a good doctor is one who is a good human being and can empathise with the patient and realise that the patient is not a mere body but also has a brain which thinks and a heart that feels!
Take care all....

dear madhavi.
i am a new member,my son is 6mnths old.read about mohanish's successful bmt.i am very happy for u .god bless your son.my question is after how many transfusions did iron chealation start?does the drug have to be administered daily?
regards,
shubhra