Did you always want to be a superhero? Make a difference in someone’s life? Here’s your chance…
Every year thousands of people suffering from leukaemia, thalassaemia, aplastic anaemia and other blood disorders die. While there are treatment methods, it’s impossible to save all of them. One way that such people can be saved is through a procedure called stem cell transplants where a donor’s healthy stem cells replace a patient’s unhealthy stem cells. Two months ago, Zee Media along with the Marrow Donor Registry of India (MDRI) launched the ‘Gift a Life’ initiative to increase awareness about stem cell donation. In this exclusive interview, Dr Sunil Parekh, the Chairman of the MDRI tells us everything we need to know about stem cell donation:
How does stem cell donation work? How can donors help?
Dr Parekh: The healthy stem cells harvested from a voluntary donor will rescue the recipient (patient), restore his health and permanently cure his otherwise fatal blood disorder. This donation is specific only for the patient with whom there is a perfect HLA (human leukocyte antigen) match. The donor’s healthy stem cells work by permanently replacing the defective or cancerous stem cells of the patient. Incidentally, this ‘matched unrelated transplant’ (MUD) is the best treatment option for such patients in whom all other conventional treatments have failed or are simply not available. Other patients, who are anxiously waiting to find HLA matched donors from the donor registries, will be greatly relieved to know that such transplants are indeed now possible in our country and can be successfully done in many centres in India. (Read: Side effects of bone marrow transplant)
Who needs a transplant?
Dr Parekh: Several life threatening and otherwise incurable disorders of the blood, bone marrow, immune system, lymph node cancers, etc., can only be cured permanently by hematopoietic stem cell transplantation from HLA matched related donors. In case such a donor is not available within the family, the patients need to urgently search for matched voluntary unrelated donors from donor registries having large numbers of recruited & HLA tested donors in their computerized databases.
Could you please explain how the initial procedure works? How long does it take?
Dr Parekh: Matching of donors with patients for their HLA identities, is a two step procedure : preliminary positive results from ‘low’ resolution tests have to be reconfirmed by repeating these tests with ‘high’ resolution technology (also more expensive). Several additional tests have also to be carried out to ascertain the health status of the donor and his fitness for donation at the time he is requested to come for the stem cell collection procedure. The donor will be counselled fully well in advance about his commitment to the program.
Once someone is matched, what is the next step?
Dr Parekh: Matching of donors with patients for their HLA identities is a two step procedure: preliminary positive results from ‘low’ resolution tests have to be reconfirmed by repeating these tests with ‘high’ resolution technology (also more expensive). Several additional tests have also to be carried out to ascertain the health status of the donor and his fitness for donation at the time he is requested to come for the stem cell collection procedure. The donor will be counselled fully well in advance about his commitment to the program. (Read: Cord blood banking: The future of medical treatment?)
How long does that procedure take? Do people need to take leave from work?
Dr Parekh: It is very important for the donor to understand that he will need to take leave of absence from work for about two days for his stem cell donation procedure. The exact date is usually decided by the transplant unit well in advance and the donor is informed accordingly. The donor registry institution will provide the donor with full transportation and other facilities as well as all costs related to his travel to the selected blood bank. The actual donation procedure will be conducted under the personal supervision of senior medical personnel and is usually completed in about 4 hours, after which he will be allowed to go home. There is no need for hospitalization for this procedure (known medically as PBSC collection), it is totally safe and carries no risks. He also needs to know that with modern sophisticated technology and computerized blood bank equipment (known as a APHERESIS cell separator), we do not have to puncture his bone marrow at all. However, in order to obtain adequate numbers of stem cells, he will receive small doses of a growth factor (known as G-CSF), daily, by subcutaneous injection, for about 5 days prior to the day of donation. There is no risk involved in taking these injections. Please be aware that there are over twenty million voluntary donors registered worldwide.
What are the common myths that you’ve come across about stem cell donation? Are there any objections on religious grounds?
Dr Parekh: Due to a lack of awareness (and education), most lay people believe that this procedure is not safe and that they will ‘lose their stem cells permanently’. Actually, like all blood cells, stem cells also regenerate rapidly, and the same donor will be fit to donate again for another matching patient after a suitable interval. People are also apprehensive about pain related to the procedure, persisting thereafter for a long period of time. Actually, a conventional blood donation uses the same needle (inserted into the vein in front of the elbow), that is used for stem cell collection. Religion and politics have no business in interfering with evidence-based life saving medical treatments like haematopoietic cell transplantations
What are the main challenges apart from low awareness?
Dr Parekh: The main challenges we have to overcome are the lack of COMMITMENT at the times of registration & recall. For the desperate patient, an ‘AMBIVALENT’ donor will result in severe anxiety and a fear of impending death staring on their face.
Will they know who has benefited from their donation?
Dr Parekh: As per guidelines published by the international registries (WMDA), and to prevent any commercial ‘trafficking of organs’, these transplants are done without disclosure of the identity of the donor to the patient, at the time of transplantation. After one year, and under strict supervision and after obtaining mutual written consents, the patient may be introduced to the donor in the presence of the medical teams.
Do people get paid anything for their donation?
Dr Parekh: Stem cell donations for haematopoietic transplants are a philanthropic ‘GIFT OF LIFE’ and the donor cannot be paid for the same. We should be profoundly grateful to such noble and magnanimous citizens who set such a good example for others to follow and spread the message.
How many donors do you have till now? What’s the shortfall?
Dr Parekh: The MDRI has a current database of recruited & HLA tested 16,000 plus voluntary donors. We are trying to register at least 500 donors per month with our current staffing strength, but should really go much faster if resources are made available to us and if our healthy and young citizens understand their responsibility to their less fortunate countrymen.
For more information check out the MDRI website. Don’t pass of this chance, not everyone gets a chance to be a superhero.
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