At a time when there is growing mismatch between demand and supply of haematopoietic stem cells which have emerged a panacea for patients suffering from blood disorders like leukaemia, thalassemia and aplastic anaemia, Marrow Donor Registry of India (MDRI), the country's first bone marrow registry giving such patients a ray of hope, has registered 30,000 voluntary donors who have been HLA typed at the registry's laboratory facility at Raheja Hospital, Mumbai at its own cost.
Human leukocyte antigen (HLA) typing is used to match a patient with a donor for his bone marrow stem cell or cord blood stem cell transplant. Started in 2009 with 889 donors, MDRI has found 12 perfect matches of unrelated donors and recipients so far. Of them, 3 donors, including two female college students and one male IT professional have already donated their peripheral blood stem cells (PBSC), for patients located in three different transplant centres in the country, noted haematologist and chairman & founder of MDRI Dr Sunil Parekh said in an interaction with Pharmabiz.
Of the remaining 9 donors, unfortunately 3 donors backed out despite being adequately counselled & reassured about the safety of the procedure. The rest are awaiting their turn for donation, as per scheduled dates to be decided by the respective patient's transplant physicians, he said.
Since inception, MDRI has been trying to strengthen its list of voluntary donors over the years. The cumulative total number of donors registered were 4528 donors in 2010, 8696 in 2011,11338 in 2012, 16400 in 2013, 23127 in 2014, nearly 30,000 in 2015, through continuing awareness drives at several locations. The target is to register at least 100,000 donors as quickly as possible - depending on the availability of donated funds for this project. The larger the size of the registry, the higher the chance of finding and providing fully HLA matched stem cell donors for the patients, the haematologist said.
Since there is very little awareness and publicity in our country about this subject, it takes a lot more effort to convince people about the absolute need for their contribution for the requirements of blood cancer patients in our country. There were no such functioning registries in India prior to the year 2008. Since MDRI is a non profit NGO, generous funds are urgently needed for carrying out the sophisticated HLA matching tests on the recruited donors. Currently, the overhead expenses, the costs of the imported equipment & imported test kits, add up to around Rs. 10,000 for each donor's HLA typing investigation. All these imported medical items are charged customs duty & various other taxes, Dr. Parekh said.
Throwing light on initiatives to boost number of stem cell donors and registration criteria for donors, he added, “Our initiatives to boost the number of registered stem cell donors are directed towards doing awareness drives and registering healthy young adults aged 18-45 years, who are well educated and working in corporate offices, IT companies, or students in colleges, youth groups, etc. Potential donors need counselling to make them understand their commitment to the patients, after they have given their consent for getting registered in MDRI. Citizens who are regular voluntary blood donors and/or platelet donors, are ideal for recruitment in the registry.”
The MDRI staff can be contacted by email or phone at their office in the Raheja Hospital. More information & contact details are also available on the MDRI website: http://www.mdrindia.org, he informed.
Talking about rise in number of transplant centres seeking unrelated stem cell donors, he said “Due to the widespread availability of diagnostic facilities, increase in number of medical colleges, hospitals and commercial laboratories, the detection of blood cancers, thalassemia and other life threatening blood diseases has improved considerably. These have led to an increase in the number of transplant centres throughout the country. So far, MDRI has received 1120 requests for matched stem cell donors from transplant centres across the country and from transplant centres across the world.”
Highlighting the steps taken by MDRI to make available HLA matched donors for patients, Dr. Parekh said, “The demographic information and HLA typing results of these donors are stored in a secure server, after being bar coded for maintaining anonymity between the donor & the patient. In addition, the HLA information of all MDRI donors is encrypted and then electronically transferred to the database of the BMDW (Bone Marrow Donors Worldwide) organisation located in Europe. Thus, this information is readily accessible to any authorised transplant centre physician in the world.”
“A transplant centre physician seeking a matched stem cell donor contacts MDRI by email. After a donor's HLA matches with the patient, the transplant centre is informed accordingly. The donor undergoes a full medical evaluation for fitness just prior to stem cell collection. On the day scheduled by the transplant centre, MDRI has to make arrangements for the donor's PBSC collection in an approved blood bank facility. The donated stem cells are transported to the location of the patient's transplant centre immediately thereafter, in temperature controlled conditions, with appropriate labelling and documentation of all records,” he explained.