Thalassemia In Isaan

[Monkey Fish]

A four year old niece of the wife is apparently suffering the ill effects of one of the bad kinds of Thalassemia. The family is poor and is basically doing nothing to help her, based primarily on the beliefs that treatment is too expensive and also not available in the NE.

After reading up (http://www.thalassemia.org/sections.php?sec=1), it sounds like treatment should be 1) red blood cell transfusions and 2) something to deal with the extra iron. Apparently item 2 is costly enough that it's not readily offered in the NE. (http://www.thaihemato.org/modules.php?op=modload&name=News&file=article&sid=22)

Has anybody had experience getting Thalassemia treated in the NE? (The family is in Roi Et.) Are red blood cell transfusions expensive? Is Exjade (see first link) available in Thailand?

[Sheryl]

Exjade is available in Thailand. The question is what is and is not covered under the government "30 baht" or (as applicable) other social security. Transfusions would be, not sure about the drug. However, the decision of whether and when to transfuse a child with thalessemia is a complex one and needs to be determined on an individual basis by a hemtalogist, preferrably one who specializes in thalessemia and related disorders.

Splenectomy (removal of the spleen) is helpful in some cases, ditto bone marrow transplant.

In any case the place to start is the nearest provincial hospital, which may well refer her to either a regional hospital or government hospital in Bangkok.

If there are any family members in or near Bangkok she could stay with, the best government hospital for this is Siriraj, which has an excellent hematology department and probably a holds a special clinic for thalessemia patients.

It's a very nasty disease and without adequate treatment the poor child isn't going to live very long. With proper treatment, she has a chance (not a certainty) of living into adolescence or young adulthood, by which time hopefully better treatments will have become available, so do what you can to persuade the family to pursue this.

This is a gentic disease and there is a good chance of any subsequent children being born with it; the parents should obtain genetioc counselling if considering having any more children. Other relatives would also do well to be tested for the trait if considering pregnancy.

Good luck, and bless you for trying to help. The poor kid.

[Sheryl]

P.S. Forgot to mention, the regional hospital for your area is Khon Kaen. Given how prevalent thalassemia is in NE Thailand I would expect they have the capacity to treat it, although the chelation therapy may be costly due to cost of the drug. The government does provide it to a small number of patients free of cost but U have no idea how one goes about applying for that or what the criteria is.

One approach you might take, if you can get her under a hematologist's care and chelation is recommeneded, is to contact Novartis (the company that produces the drug) yourself and ask about the possibility of a free supply for an indigent patient. I did this once (with regard to another drug) and it was successful not only for that patient but in getting a supply to the hospital at affordable cost for other patients as well. Nothing lost by trying. Start with their HQ first because their Thai office isn't going to do anything unless they are encouraged to do so by their HQ, and play up the fact that this is a 4 year old child.

BTW, Thailand has apparently perfromed a number of stem cell transplants for patients with thalassemia with excellent results. The number so treated is still small and it is not a treatment widely available yet, but Siriraj would be the best place to have a chance for it.

[Monkey Fish]

Sheryl, thanks for all the great information.

I'm renewing the push to get her to the regional hospital for a start. Having been there before, I can only hope they refer her to Khon Kaen.

[NedKelly]

let us know how you go with the hospital in KK......it could well make a great project to follow up !!

Cheers,

NK

[Monkey Fish]

let us know how you go with the hospital in KK.

I'm in Bangkok, just trying to exert a little influence.

Apparently they've been to the local amphur 'hospital' and are awaiting the results of a blood test. It was my understanding that she was diagnosed with Thalassemia in Roi Et at birth, but I think it's fair to say that I'm dealing with a significant information gap.

If anything informative happens, I'll update the thread. Thanks for your help and concern.