Lack of awareness remains big challenge for blood stem cell registry

Unlike blood donation, which has got wide acceptance from people, blood stem cell donation still suffers from various barriers, including lack of awareness.

BENGALURU: Unlike blood donation, which has got wide acceptance from people, blood stem cell donation still suffers from various barriers, including lack of awareness. Used to treat blood cancer and other blood-related disorders, stem cell transplantation can be the only chance at life for some patients, especially those suffering from leukaemia.

In January this year, DKMS, an international not-for-profit organisation tied up with Bangalore Medical Service Trust (BMST) to launch a national blood stem registry called DKMS BMST Foundation India. While there are international registries of donors, the HLA ( Human Leukocyte Antigen) type that needs to match between donor and patient is affected by ethnicity.

“The Indian ethnicity is poorly represented in the international blood stem cell database. There are only two other major national registries in India, along with a few smaller ones. Since we launched officially in May, we have got 33,000 people to register but that number is not enough, given that awareness is close to zero in India. A huge effort goes into educating people when we conduct donor awareness drives. They hold several myths and misconceptions,” Patrick Paul, CEO of DKMS BMST Foundation India, said.
Apart from thinking of it as losing an organ, some people wrongly believe that they will suffer side-effects.
“For example, a donor who registered with us wanted to back out later as he was going to get married and thought donating blood stem cells would make it difficult for him to have children. They think that they are donating an organ like kidney, but in fact, it is the same as donating platelets,” Paul added.

Dr Mahesh Rajashekaraiah, consultant, Haemato-oncology and Bone Marrow Transplant, Fortis Hospital, said, “In countries like USA and those in Europe, it takes two to thee weeks to find a blood stem cell match. In India, several never find a match. For blood cancers, stem cells are crucial as the patient will not be amenable to chemotherapy. This is high risk, as the cancer can relapse despite chemo. Such patients are benefited by transplantation of the stem cell, which is present inside the bone marrow.”

According to Rajashekaraiah, with family sizes reducing and nuclear families becoming more popular, it is increasingly difficult to find a related donor match. “This is why we look at international registries for unrelated donors. For blood disorders such as Thalassemia, stem cell transplantation is particularly important as the patient has less haemoglobin and red blood cells than normal,” he added, pointing out that blood transfusions every few weeks cannot keep people alive, as this increases iron content in the body, leading to heart and liver problems. Infants as young as one year old come to hospitals in need of blood stem cell transplantations, he said.

The two other major national registries in India are DATRI (meaning ‘donor’ in Sanskrit) and MDRI (Marrow Donor Registry of India).

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