For more than 100 potentially life threatening diseases, bone marrow/ blood stem cell transplant (BMT) is the only cure. These diseases range from cancers (leukaemia, lymphoma, some solid cancers) to genetic disorders of blood forming cells and immune system (like thalassemia major, sickle cell anaemia, severe immunodeficiency disorders, etc).
There are more than one lakh patients with serious blood disorders diagnosed in India every year and they can be cured with a BMT. For a successful BMT, human leukocyte antige (HLA) of the patient and the donor needs to match. The chance of a patient finding a matched donor within family is only 25 to 30%; this leaves about 70% patients needing BMT for the cure of their disease but don’t have a family donor.
The World Marrow Donor Day (WMDD) is observed globally on the third Saturday of September. This year WMDD will be held today (Sept 17, 2016. The main objective of WMDD is to thank all donors worldwide.
Unrelated donors, family do-nors, cord blood donors, donors who already have donated and donors who are on the global registry waiting to donate. Secondary objective is to raise awa-reness among the general public and decision-makers about being a stem cell donor and the impact of blood stem cell transplantation on patients’ lives.
There are a few unrelated donor registries in India (DATRI, BMST, MDRI, BSC), but DATRI Blood Stem Cell Donors Registry based in Chennai has the largest donor pool. The DATRI has facilitated 187 donations for BMTs from a database of just over 1,40,000 registered donors in India.
Healthy individuals aged between 18 and 50 years can register as potential blood stem cell donors. The registration process involves filing application forms followed by collecting a buccal swab, for identifying the HLA type. This data will serve as a reference point to check for a match when a patient seeks a donor.
There are two ways to donate:
1) A direct bone marrow harvest is a method that is in practice for more than four decades. Marrow, which is rich in blood stem cells, is harvested from the hip bone via a small puncture.
2) Another method is the PBSC (Peripheral Blood Stem Cell) donation, which is similar to blood donation. The entire donation process takes just about three to four hours.
A donor may feel slight nausea, body pain, or headache during the preparatory and donation phases, but these symptoms are usually mild. There have been no long-term side-effects caused by the process. Donors can continue their normal routine post donation.
Action points
1. Patients who do not find a match within the family, can approach national and international donor registries to look for unrelated donors. The probability of finding a match is only one in 10,000 to one in two million. With such low probability, it is necessary to have a very large registry of willing donors.
For a large country like ours, to have a large registry of potential donors, there is an immediate need for awareness on the entire process from recruitment of donors to becoming a match. Countries like Germany and USA have millions of donors in their registry as compared to less than two lakh donors in all-Indian registries.
2. The contribution of the Government of India has been almost none in this regard. Need of the hour is to create a National Blood and Marrow Stem Cell Registry, which has to be a Government of India initiative. This can lay down policies and procedures in addition to unifying the efforts of all existing registries.
3. People need to be educated that they do not have to donate while registering as a potential donor. They will be called to inform if found to be a match and chances are they might not be called upon at all. And if they are found to be a match, they might be the only person who can save the patient. Not many people know and realise that they could be the only hope for someone’s survival. Also, a lot of them do not know that donation is a simple and extensively followed procedure.
An increase in awareness, co-upled with proactive voluntary registration by the general public will help thousands of people suffering from blood related
disorders like thalassemia, leuk-aemia etc. So let’s all register and be the lucky one to donate!
(The writer is Senior Consultant and Head, Pediatric Hematology, Oncology and Bone Marrow Transplant, Mazumdar Shaw Cancer Centre, Narayana Health City, Bengaluru)