Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: jay on May 28, 2013, 07:54:59 PM
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Dear All,
In search of donor for my son I am testing lots of my relatives; most hopes are from son's cousins and uncle and ants.
I had already tested ~20 relatives but no success and now want to test another 20. The hope I saw during this search is me and my cousin is 100% match.
The cost of one person HLA test with Mumbai-India based reliance lifescience is Rs ~10000 (USD 180). In my opinion this is very high and they have only one option "HLA A-B-DR"
Do any one know cheaper HLA typing test center in India for mass testing of relatives to find donor.
I am interested to know Prices from all over world for test variants 1) HLA A 2) HLA A-B 3) HLA A-B-DR and 4) HLA A-B-DR-DQ
Best regards,
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I am running behind this study
http://bloodjournal.hematologylibrary.org/content/87/2/800.full.pdf
well this may not help for every one, but i think it may work for those who married in same "group" as of their ancestors.
Best regards,
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Ok two days after no reply, so i assume that there is no HLA testing org which do it in less than what is mentioned above.
Well it is utter shameful that despite widespread thalassemia, gynecologists (so called educated) have no vision in India.
Somehow i don't like nexus between Gynecologists, Pediatricians and Blood banks (thank god International Red Cross Society exist); well i am not generalizing but that's my experience some where in state of Maharashtra in a small town of 50 thousand population.
Somehow i also don't like the nexus between doctors specially from India (not every doctor), cord blood storage org, bone marrow registry and DNA testing labs.
This much anger is enough for me to establish a open source DNA testing lab, I am expecting i will be doing single "HLA A-B-DR" for Rs. 5000 (USD 90) and "HLA A" for Rs. 2000 (USD 35).
Wish me luck, i will be back to the forum aprox after three months!
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Anyone have an answer for Jay?
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I don't have an answer for the testing center, but I'just would to add that Dr. Sodani in general suggests to do HLA for locus A, B, C, DR, DQB1
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Ohh My God, look at this
https://www.23andme.com/
it costs only $99 + shipping, near about INR 6500 (although it is not available in India right now)
but the benefits of this test are way way way higher than HLA typing and this test also compares two HLA genes
My god I spend large money on HLA typing tests and also I imported expensive equipments and kits from US to India to setup DNA testing lab and to help myself and other thalassemics
Well lesson learned!
Just have a look at the usefulness of the test
https://www.23andme.com/health/all/
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Hi Andy,
Expecting some words on 23andme from you as it is an US org. and the test is primarily available in US and EU.
I am just thinking how to overcome the barrier being an 'south Asian' and 'neglected' by the company OR unprofessional approach from the region OR the regulations are restricting it to be in India.
Singapore is an option but how !?.. any way I refuse to be neglected. Again the question remains same, is similar test available in India?
Best regards.
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I don't know anything about testing in the US. I would suggest contacting Eileen at CAF for direction.
Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999
Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org
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As i mentioned earlier I am running behind a possible perfect HLA match in our extended family.
Now I have to admit after testing more than 80 peoples, it is difficult, it is very difficult. After 30 more possible testing in next six months i will stop running for it.
But due to 23andme initial test I got to know, me and my major baby are carriers for Hemochromatosis (iron hungry mutation on gene 6)
And now we are struggling to keep ferritin level. For two months he is showing readings between 1800 to 2000.
He is 3.5 yr 11kg and was on 250 mg Exjade from two months, (before he was on Desirox 125mg) now increased to 325mg from last week. I will start IP6 from next week.
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hey Jay ,
Where you able to find any cost effective labs in Mumbai where they could do the high resolution HLA matching. You did mention Mumbai-India based reliance lifescience which costed you around 10000 Rs. In all this time where you able to find any other good center in Mumbai which is cost effective as well ?
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hey Jay ,
Where you able to find any cost effective labs in Mumbai where they could do the high resolution HLA matching. You did mention Mumbai-India based reliance lifescience which costed you around 10000 Rs. In all this time where you able to find any other good center in Mumbai which is cost effective as well ?
Dear Mukta,
I reckon high resolution HLA typing facility is not available in any of the hospitals in India. HLA typing work done in India are low resolution. As per my knowledge most of the hospitals have tie up with international hospitals/labs for high resolution HLA typing. Apollo Chennai sends cell samples to Histogenetics USA for HLA typing. HLA typing will cost you around 10K, is absolute must to search for appropriate donor for BMT. Buccal Swab sample technique is used for DNA sample collection. It is a painless non invasive method of DNA sample collection. A cotton swab similar to those used in personal care is gently rubbed against the inside of the cheek to collect cells for DNA testing.
Don't go for low resolution tests as it cannot be used for HLA matching. Only go for high resolution HLA tests.
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Hey Mukta,
At this moment i know only two places where cost effective HLA typing is done.
One is AIMS and another is BHU but it looks like BHU has discontinued the cheaper test and has only the final level high cost test.
http://www.aiims.edu/aiims/hosp-serv/revised-rate-list.htm#_Toc471767136
http://bhu.ac.in/ims/hospital/investigations%20list%20updated%20till%2020.01.2012%20(circulatedl).pdf
Just to breakdown little bit from above links the test you need will cost INR 5000 if you approach AIMS individually and if approached via another hospital or AIMS inhouse ward it will cost INR 2500
At Banaras Hindu University it will cost 6000.
If the donor is fixed then the final test will cost 12000.
There was a public funded project sponsored by department of biotechnology to make low cost HLA typing kits, if anyone gets hold on it the price will decrease all over india drastically but as usual its a hard nut to crack.
Since i have access to other countries via friends i did my tests from outside after first 20 odd tests from mumbai. Those tests costs me around 7500 per test in the batch of 20 samples
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Hi Jay,
I am not clear on the HLA testing being done on the donor? I am also not clear on you doing 20 tests for HLA typing in Mumbai?Are you referring to random donor selection and then getting their HLA tests done to check if their HLA matches with patient?
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Hi Himanshu,
I am not clear on the HLA testing being done on the donor?
Yes HLA typing is a DNA test done on donor and patient before BMT.
HLA is small set of genes on chromosome 6 which in layman's langauge desides whethere the body cells are own or foreign. So if we get exact matching HLA doner the engrafting of new marow is very fast. So in a way we cheat better to patients body if HLA match is perfect. The success rate of BMT in perfectly matching HLA is almost double than less matching HLA at fraction of cost.
I am also not clear on you doing 20 tests for HLA typing in Mumbai?
Unlike medicine doctors prescription is not mandatory for tests so i was searching for all the labs in india, lab from mumbai was the closest because they have outlet in pune which was my workplace.
Are you referring to random donor selection and then getting their HLA tests done to check if their HLA matches with patient?
No not random even rich peoples will lose fortune like that. If you check an earlier link from blood journal in this thread, that shows the probability of finding perfect HLA match donor family (family of father and family of mother). So i decided to chess that study, had saved 2 lac rupee from two yrs of my job.
First i did this test for three of us baby me and my wife and got to know exactly what is this test.
Since we married in small group of people (cast) around 10lac population which i believe increases the possibility of finding match in extended family. I probably wouldn't have done it if we would have married in cosmopolitan environment.
Then secondly i did this test on about 12 of our first-second cousins because they are of my age and need less explanation to get samples from them. Their i got to know that me and my cousins are matching but none for my baby; but it established my faith in the study. Then i decided to go deeper with more systematic scientific approach and find out that our child got the HLA gene from my grandmother and my wife's grandfather (not thalassemia he got it from my grandmother and my wife's grandmother) Simultaneously i got a hold on spit sample easy to use sample collecting test and carryout another 80 odd tests. We found multiple relatives matching each other but it looks our baby is unfortunate enough, with only one family left for testing we are already working on plan C.
So if you do not have a matching sibling then there is prity good probability of finding a matching cousin.
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Jay,
Thank you for you elaborate response. I am well aware of HLA mapping tests before BMT :-). I wanted to understand what made you do HLA tests on 20 people and if the selection of those 20 donors was random or otherwise. In my understanding there is no point trying to find a match in extended family as the chances are as low as finding it through bone marrow registries. What is your Plan C?
Have you tried searching for donor through Stemcyte, NMDP, Datri and other marrow registries. Have you tried to find out about cord blood transplants. Cord blood transplants also offers hope to patients with hematological disorders like Thalassemia and sickle cell anemia. Good thing about cord blood transplants is that you don't need a perfect match (6/6) for transplants even if the donor is unrelated. In CBT 4/6 or 5/6 or even 6/6 have yielded similar results. If you can afford you must try CBT in Chang Gung Hospital Taiwan.
Apollo Chennai has recently started cord blood transplants on Thalassemia patients. Have you also explored Haplo transplant option from mother or father. You can contact Narayana Hrudalaya or Dr. Sodhani/Eugenio through http://www.curethalassemia.org/.
Are you based in India or abroad?
Regards,
Himanshu
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I am in same boat. Searching to do high resolution HLA so that can proceed MUD match unrelated donor, but as informed from Vellore CMC, no high resolution HLA in india or Pak.
What to do, any one have idea for cost via histogenetics New York.
Life is pretty stressed up.
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Alamalpha ,
I very recently got my sons , myself and his moms high resolution HLA from Histogenetics . We got he done from a Dinanath mangeshkar hospital in Pune which had a tie up with them. The cost was approx Rs 16000 per test. In the same time I had also directly sent them a mail asking for the HLA cost and India branches . They had sent me a detail reply which is attached for your reference. You can directly also send them the samples in a cotton swap which they will provide. The cost of directly sending to them is approx Rs 12500 . Hope this helps.