With an aim to connect patients suffering from life-threatening blood disorders such as leukemia, sickle cell disease, thalassemia, and aplastic anaemia to the donors offering life-saving blood stem cells, the Union Health Ministry is mulling joining hands with the marrow donor registries in the private sector to create a central database of committed donors.
“Very few patients are fortunate enough to find healthy matching donors within their families. Most need to search for matching voluntary donors outside their families, where the chance of a match is higher if it is within the same ethnic community. Such registries have details of stem cell donors.
“To help the patients, we are exploring ways to bring all the registries under one umbrella. We are looking into the nitty-gritty,” a senior official from the Ministry said here on Wednesday on the sidelines of an event organised by the Chennai-based DATRI.
A non-profit organisation, DATRI, is the largest repository of life-saving blood stem cell donors engaged in helping find a matching blood stem cell.
To push blood stem cell donation, it had organised a meeting of two recipients with donors who saved their lives by donating their stem cell on time. While 34-year-old Delhi-based Garima, who was suffering with blood cancer (Mixed Phenotype Acute leukemia) found her match in Gurumoorthy from Coimbatore, Nutan Pandey, a 33-year-old from lucknow, who was diagnosed with Myelodysplastic Syndrome, was lucky to get blood stem cell from Hari Babu (29), also from Chennai. Both are recuperating well. However, many like Aashim Joy, who is struggling with blood cancer, are not so lucky. Aashim’s family is desperately looking for a match, which varies from one in 10,000 to one in one million.
Experts in the sector stressed the need to spread awareness. Raghu Rajagopal, co-founder and CEO of the DATRI, explains. “As the chances of a match within families are 25 per cent, patients can hope for a match with one of the donors whose details are saved in the database, But because of low awareness and myths besides misinformation about blood stem cell donation people are not coming forward to donate the life-saving product.”
Data speaks. Though DATRI has over 3.5-lakh registered voluntary donors, there are still 1,800 plus patients waiting for a second chance at life. “We get around 20 calls every day searching for match from across the world and we are able to help 12 to 15 people in a month,” he said. There are around four registries with total around 4.5 lakh registered donors. More volunteers are needed, Raghu added.
Claudia Rutt, who was associated with one of the oldest blood stem cell donor registries in Germany, DKMS German Bone Marrow Donor Center till she joined DATRI, said that Germany’s population is more than 82 million and around six million donors are registered. But sadly, in India which has huge population and disease burden, just 4 million donors have registered.
She informed that anyone between 18 and 50 years of age can become a donor. The process is largely painless, safe and one walks away having gifted a life.
Donors Hari Babu and Gurumoorthy agree. They noted that generally, people think that bone marrow transplant or a blood stem cell donation is painful, but it is not. “It is just like donating blood and there is a need to dispel such myth in the society,” chipped in Sorabh Sachdeva, another donor who was also felicitated at the event.
