India's dire need for an adequate stem cell registry and donor awareness
news Tuesday, June 09, 2015 - 05:30
On October 28, 2013, Nalini Ambady, a psychologyÂ professor at Stanford University, died from leukemia, but what made it news was that it could have been avoided had she been able to find a matching bone marrow transplant back in India. Finding a bone marrow match is a serious problem in the country, compounded by several factors starting with the lack of an adequate registry and prohibitive procedural costs. In such a scenario, the launch of a new stem cell registry for Indians by a charitable trust may emerge as a ray of hope for around 1,20,000 Indians diagnosed with blood cancer annually and another 10,000 children born with thalassemia, an inherited blood disorder. Often, their only chance at recovery is lost due to a variety of factors, starting with finding a match due to the lack of a large, ethnically diverse stem cell registry in India or in other words, voluntary donors on stand-by. Even if one finds a match, getting someone to agree to donate when the time arrives is another uphill task, and so is finding the money for it. In these circumstances, Jeevan Blood Bank and Research Centreâ€™s newly launched registry, adding to the existing stem cell registry space in the country is aiming at increasing the number of Indian donors and thus increasing the likelihood of finding a match. The trust had established a non-profit HLA-typing laboratory in 2013 but in May, announced the launch of an extensive stem cell registry. The centre plans to recruit 50,000 bone marrow donors from across the country in the next 5 years, but the task is easier said than done. Finding a match Although Indians have access to international stem cell registries, such as the Netherlands-based Bone Marrow Donors Worldwide database having 74 registries with over 25 million registered bone marrow donors from 52 countries â€“ biological factors nullify this option. Unlike the simple straightforwardness associated with blood donation, stem cell matches are largely based on oneâ€™s DNA â€“ which depends on oneâ€™s racial or ethnic background. The Human Leukocyte Antigen (HLA), a type of protein found in most cells in the body is crucial to finding a match. The patient and donor must have a minimum of six out of eight HLA markers in common. Most often, it is the siblings of patients who are tested because an individual inherits half of HLA markers from the father, and half from the mother. However, less than 30% of people find a donor from within their families. There are other problems. In a hypothetical study, British medical journal Lancet found that even if 10 lakh donors were to be listed, regional social factors would still hinder a match - on account of the practice of consanguineous marriages, Tamil Nadu had a 44.2% chance of finding a matchingÂ Â in comparison with other states like Haryana had an 81.2% chance. A DATRI awareness poster India currently has four major functioning registries - the DATRI Blood Stem Cell Donor Registry, Marrow Donor Registry India in Mumbai, Bharat Stem Cells, and the recently launched registry by the alumni of Bangalore Medical College. In all,Â India has around one lakh donors from a population of 1.2 billion but there is no concrete figure of just how many donors there actually are. "There is no solid data from India as to how much( donors) we actually need. We are doing 10 percent of what we should be doing, " said Dr. Revathy Raj, consultant, Apollo Hospital. If we want to help thalassemia patients, we must be doing around 500 to 600 transplants every year in parallel to prevention programmes. We are nowhere close to that even overall, she says.Â So how does Jeevan plan to raise this figure? â€śWe will target regular blood donors in the 20-40 age group who have donated in the last two years because they would be more aware of the seriousness associated with stem cell donation and wonâ€™t drop out,â€ť says Dr P Srinivasan, Chairman, Jeevan Blood Bank. Ethnic diversity Dr Srinivasan however, says that the ethnic diversity of the countryâ€™s population increased the difficulty of HLA matches. Ambadyâ€™s chances of a match would have been higher had the sample come from Kerala, her birthplace. However, nothing worked when six potential matches in India dropped out. Â DATRI, which is an established stem cell registry, has a database of 90,000 voluntary donors from various ethnic backgrounds in the country. A Datri donor drive Is lack of awareness a major problem? Even DATRI, which has just completed their 100thÂ stem cell transplant, says a lack of awareness amongst the general public is an obstacle in building up a diverse registry. Convincing donors not to back out of donating after a positive match is another matter. â€śDecisions made by people living in India is not an individual decision. All decisions are joint, it could involve the spouse, the boyfriend, the dad, uncle, sometimes even the community president. In some cases, everyone is involved,â€ť says CEO of DATRI, Raghu Rajagopal. Many donors consent as individuals, later back out due to family pressure.â€ťIn one case a 22 year-old girl agreed to donation. Her entire family needed convincing. But since she stuck by her decision, we were able to convince her family,â€ť he said. Â The donor has to be convinced enough for the doctors to counsel and convince the entire family. If the donors themselves gives up, then there is no use, he says explaining that counselling was not an overnight process. While one of the biggest problems in India has been donor awareness, another issue that patients and stem cell registries have been struggling with is a lack of funds. Once a person decides to donate their stem cells, a buccal swab sample is collected by running a cotton swab inside the cheek. It takes around Rs 7,500 for every potential donor to be tested for HLA typing. If a donorâ€™s sample matches that of a patient, there are two methods to donate bone marrow. The Peripheral Blood Stem Cell Collection (PBSC) is the more common and non-invasive methods that last four or five hours. The donor is injected with a naturally occurring hormone to increase the number of number of blood forming stem cells in the body for four days. After this, based on the cell count in oneâ€™s blood, on the fifth day a tiny tube is attached to the vein to collect the stem cells. The other rarely-used method is an in-patient procedure that extracts bone marrow from the donorâ€™s pelvic bone. Importing a single unit of stem cells for transplant costs $45,000 US dollars, Dr Srinivasan says. But the cost of doing it within India is currently around Rs 8 lakh, which Dr Srinivasan hopes to bring down to Rs 3 lakh. For 50,000 people over five years to be recruited for the pan-India registry, it will cost Jeevan Rs 37 crore, said Dr Srinivasan. With finding from the Jamsetji Tata Trust, Jeevan has enough to start with a batch of 6,000 donors. The Australian Consul General and Sundaram Finance have also pledged their support. As for patients in need, Dr. Srinivasan says, â€śAfter we announced the registry, we are getting on an average at least three requests a day.â€ť (Image courtesy: DATRI Facebook page, rikbasra.com)
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