Indians Need An Indian Public Stem Cell Bank
It was a Saturday morning in September 2005, a day most Jeevan supported Thalassemic children come to collect their blood; for transfusion. The parents of Alam and Dharini walked in with flowers to wish us. In the course of our conversation they asked if Jeevan Blood Bank, which just turned ten, could do something more for Thallasemic children. We were taking care of about 20 children and know there are over 10,000 Thallasemic children born in India every year who need regular blood transfusions to live as long as Alam and Dharini. Jeevan was also aware over 120,000 Indians are diagnosed with various blood cancers. This marked the beginning.
Transplantation of stem cells from bone marrow and donated cord blood has been widely recognized in developed countries as the treatment of choice for several blood diseases. It may come as a surprise that this process offers hopes of a cure for 60% – 80% patients suffering from various types of cancers of the blood, bone marrow disorders and Thalassemia. Today, stem cell transplantation is often the only curative treatment for several hematologic diseases. However, for Indians living in India as well as overseas and diagnosed with such disorders, the outcome is not encouraging.
Marrow transplantation is not totally new to India. Autologous and related marrow transplants have been performed since 1981. Centers in 20 major cities currently perform up to 300 such procedures a year. The premier transplant centers in India attract patients from neighboring South Asian and Middle Eastern countries, primarily because associated costs are the lowest in the world.
Stem cell transplants produce the best outcomes when a patient’s human leukocyte antigen (HLA) and the HLA of the potential donor or cord blood unit match closely. This process is significantly more complex than matching blood types. There are many HLA markers that make a person’s tissue type unique; however, matching certain markers is critical to a successful transplant. A patient is most likely to find a matching donor from his/her own ethnic group. Recent struggles of Amit Gupta of Photojojo and that of Late Prof. Nalini Ambadi are some examples. This is to say patients of Indian origin living overseas looking for matching donors are most likely to find these in India. But the task is very complicated because India unfortunately does not have a large national marrow donor registry and the chances of an Indian finding a match in the international registries is less than 10%. It may be possible for a patient in India to locate a HLA matched bone marrow donor or cord blood unit at one of the registries in the US or Europe, but the cost of importing a single unit of cord blood is about $45,000 and that does not include the many costs associated with transplant. On the flip side, someone living in USA has access to a health care delivery system but there is no Indian registry to consult.
Patients in India and abroad looking for matching donors are forced to organize grass root donor drives. But this process is expensive and cumbersome, as tissue typing each blood or saliva sample for HLA costs thousands of rupees per donor and the chances of finding a match ranges from marginal to zero.
Understanding thecompelling need to establish a public stem cell registry, Jeevan founded Jeevan Stem Cell Bank (a public cord blood bank) in 2008. In 2013, Jeevan established a state of the art, not-for-profit, HLA typing (High Resolution) laboratory to facilitate the HLA needs of patients and potential donors. In September 2014, Jeevan started a bone marrow donor registry. Jeevan is not only the first blood bank in India to establish a 100% blood component facility in 1995, but was the first center in India to receive ISO 9000 certification in 1999. A wonderful team and community support enabled Jeevan to maintain its track record.
Jeevan is a not-for-profit organization managed by a Board of Trustees. The revenue sources for this sustainable organization include income from cost recovery for blood products, public donations and a grant equivalent to USD 180,000 from the Government of the state of Tamil Nadu to harvest and process 3,000 units of cord blood. Jeevan has also received a loan equivalent to USD 3 million from a World Bank aided fund to harvest and store 5,500 units of stem cells from donated cord blood. Until February 2015, Jeevan has stored 3207 units and has facilitated two successful transplants. During 2014 Jeevan received 156 requests for HLA match and found 3 units that have a 10/10 match and 13 with 9/10 match.
Jeevan’s target, for 2020, is to harvest and store 30,000 units of stem cells from donated cord blood. It also intends to build a Bone Marrow Registry with an additional 30,000 potential donors from repeat blood donors. With over 28 million births and 9 million blood donations annually, it is possible to scale up the registry to a significant size facilitating quick and affordable access to matching stem cells from donated cord blood or bone marrow donors for Indian patients with blood cancers, Thalassemia and other curable blood disorders living across the world.
In 2005, when Jeevan decided to collect, process, test, type and store 30,000 cord blood donations over 5 years, the challenge was to convince 30,000 Indians to contribute USD 600 each over three years. If that had happened, there would have been a significant registry today and over 60% patients would have found a match. But that did not happen.
Alam and Dharini are now gone. We at Jeevan believe its time for all Indians to work together to create a sustainable registry and inventory of stem cells to help our future generations and ourselves. I am reminded of Billy Jean King’s statement “Every generation’s job is to make it better for the next generation”. Jeevan seeks participation of the Indian Diaspora in this effort. Jeevan Blood Bank and Research Centre is permitted by Govt. of India to accept financial contributions from abroad and donations within India are eligible for tax exemption under section 80G of IT Act.
Dr Srinivasan can be contacted at: firstname.lastname@example.org