Bone marrow registry to patients' aid

Various organ transplantations have become quite common in India – kidney, liver, lung, cornea to name a few. Organs are being harvested from cadavers, brain dead individuals and also from willing donors.

But the situation is not that simple when it comes to bone marrow transplantation, which becomes necessary in diseases like leukaemia, lymphoma, aplastic anaemia, myelofibrosis and many other conditions.

Bone marrow is the soft spongy tissue found in the centre of most large bones that
produces stem cells which can develop into the cellular components of blood like white cells, red cells and platelets. In India, various studies indicate that anywhere from 85,000 to 1,00,000 patients require bone marrow transplants every year and hardly 500 or so get it. The ones who are not lucky simply die.

This is due to the fact that not many bone marrow registries exist in India. According to international standards, a good registry should have one million donors on its rolls and such registries exist now only in USA, UK, Germany and China. A reason for the dismal state of affairs in India is the fact that it is difficult to get a match for the South Asian population, which underscores the need for a registry with large number of donors.

The problem faced by the patient who needs bone marrow is to get a suitable match and the prohibitive costs involved. In a very small percentage of cases, one of the relatives usually is a match, but if this does not happen and a matching donor has to be found among non-related individuals/donors, enormous expenses will have to be incurred in testing dozens of donors, whose HLA (human leukocyte antigen) typing has to be done to match with that of the recipient. Sometimes, even after spending upto Rs 20 Lakh or more, a match may not be found and it is at this point that many simply give up.

How is bone marrow registry different? A totally not for profit entity, those who register as donors are HLA typed at the expense of the registry. And when a good number of typed donors are available in the database, this information will be made available to any needy patient in the state, country and even internationally, free of cost. At the right time, when the registry has a sizeable number of donors on its database, it will be connected to all other registries in India and abroad.

One can become a donor by registering and signing a consent form and giving 5 ml of blood for HLA typing. At the time of actual donation to a needy patient, the present state-of-the-art procedure which uses Peripheral Blood Stem Cell donation (PBSC) makes this just an extended form of blood donation.

In this technique, five injections are given to stimulate the marrow to produce more stem cells and release them into the blood stream so that they can be collected by a procedure called ‘apheresis’. Just like in a blood donation, the donor’s blood is taken, all the stem cells separated and the rest of the blood is put back into the donor. A simple procedure, indeed.
The BMC DT-INFOSYS Bone Marrow Registry – the coming together of Bangalore Medical College Development Trust and Alumni Association and Infosys Technologies – is in the process of registering donors, taking their blood samples for HLA typing and developing a database. The initial goal is to have 10,000 HLA typed donors in the registry by this year end.

This registry is not to be construed as an effort of one college but should be deemed belonging to all medical and health sciences institutions and looked at as a great value addition to the healthcare delivery systems available in Bengaluru.

(The writer is Chairman, BMC DT and Former Registrar, Rajiv Gandhi University of Health Sciences, Bengaluru)