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Technology has made donation of bone marrow stem cells easy.

It was not going to be very different from blood platelet donation. But it was going to help a 5-year-old girl diagnosed with a non-malignant but curable blood disease lead a normal life – her only chance of doing so. The young man who had come forward was among the few who have volunteered for such donations. On  April 19, the procedure happened – a common event in the West but rare in India.

Bone marrow stem cells donation is a relatively simple procedure that is like blood donation done over three-four hours. The technology is old and well established.

Dr Srinivasan Periyathiruvadi, chairman and co-founder of Jeevan Stem Cell Foundation.

For best results, the bone marrow stem cell transplant needs a perfect DNA match between donor and recipient. But it is rarely available to the lakhs of people afflicted by blood disorders such as thalassemia, blood cancer and other hereditary afflictions. The reason is lack of awareness among potential donors to come forward and register themselves, says Dr Srinivasan Periyathiruvadi, chairman and co-founder of Jeevan Stem Cell Foundation. Below is his Q&A.

How serious is the problem that the bone marrow stem cell transplant can address?
From 2007, in India, approximately 120,000 to 150,000 are diagnosed with blood cancer every year. Similarly, every year 15,000 children are born with thalassemia. Sixty to eighty percent of people with these conditions can hope for a cure if they have access to affordable, matching blood-forming stem cells. The challenge is, we don’t have a registry of large enough donors.

Globally, 38 million have registered as blood marrow stem cell donors of which 95% are from the west. The Jeevan Foundation Stem Cell registry has some 12,000. The problem is that it is rare to find a donor within this small donor base.

Stem cell transplant sounds like a surgery with complications. Maybe that’s what is holding people back.
The actual procedure is not very different from blood donation. Blood forming stem cells are present in the bone marrow. In the past, the stem cells had to be extracted directly and that was done from the pelvic bone. It was painful so anesthesia had to be given.

Today, a machine extracts the stem cells from the blood. The blood is drawn from a vein and taken to the machine that extracts the stem cells and sends it back to the donor. In three – four hours, the process is over. Ahead of the process, medicines need to be given to the donor for a few days to make the stem cells come out of the bone marrow into the periphery.

Who can donate?
Healthy young men and women in the 20 to 40 age group are preferable. The younger the donor better are the chances of their cells multiplying.

We take a blood sample. Type their DNA, ie, extract the DNA information and put it in a database. Then when we have a request, we run the DNA information of the patient through a software to find if there’s  a perfect match.

If there’s a match, we make sure the donor is completely fit. Exhaustive physical tests are done to decide if the donor is fit to donate. If we have 10 people with a perfect 10 X 10 match, five or six back out. That’s not peculiar to India though. It’s common all over the world.

You talk about DNA match. DNA varies from region to region.
Yes, the chances of a Caucasian bone marrow stem cell matching with an Indian are very low. Even if you find a perfect match, it would cost approximately $40,000 just to bring the stem cells to India.

Within India, too, there are some nine language groups who differ in their DNA. So the chances of a Tamil patient getting a 10 X 10 matching Tamil donor are higher. We are now focusing on regional registries which would lead to a national consortium.

Jeevan Foundation Stem Cell registry’s goal is to have some 50,000 potential donors whose DNA information is available on a searchable database.

What are the costs of a stem cell transplant?
There are three stages. Registering the donor, collecting their DNA, including it in the DNA database, and searching the database to find a perfect match is the first stage. This the foundation will bear from CSR funds and other donations. The second stage is performing the physical tests on the donor, the process of harvesting the cells, then moving it in a temperature controlled situation to a patient. The cost for this is Rs 3 lakh to Rs 3.5 lakh. Then the transplant and hospital expenses the patient has to bear.

Why do you need a stem cell registry?
Today, we have the infrastructure to do the stem cell transplant. Bone marrow stem cell transplant was started right here in Tamil Nadu, in CMC Vellore, in the 1980s.

There are some 200 centers in India where the transplant can be performed. But often there are no perfect matching donors. We just don’t have a large donor database to find perfect matches. In the absence of this, family members donate their stem cells which are often just a 50% match. The complications would need to be managed and the patient has to take medication. A perfect matching donor gives a high chance for a cure.

 Who can register? What are your goals?
Jeevan Foundation Stem Cell registry’s goal is to have some 50,000 potential donors whose DNA information is available on a searchable database. Anybody in the 20 to 40 age group is welcome and preferred. Ideally blood and platelet donors would be the immediate target group for bone marrow stem cell donation also.

More information is there on the website https://www.bethecure.in/

If anyone is interested to register, they can send an email to registrations@jeevan.org. We will organize the taking of blood sample and the rest.


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