Every year, India has 1.2 million cases of cancer and life-threatening blood disorders like thalassemia and aplastic anemia. These disorders and many more can easily be treated with a bone-marrow transplant. Stem cells from donors at the right time can save 60-80% of children with cancers and blood disorders.
Worldwide, 75 registries for stem-cells exist with profiles of over 25 million people. Indian databases have only 0.2 million profiles to check for compatibility. This means even if every one of those donors needed to donate stem cells, there would still be 1 million waiting for a donor. A patient in need will have to pay exorbitantly to run tests and find a matching donor outside India.
When stem cells are readily available from a family member, a patient typically has to pay Rs 18 lakhs for a bone-marrow transplant. The amount increases to Rs 23 lakhs if a donor is found within India. To check and acquire stem-cells from outside India can costs from Rs 30-55 lakhs depending on the registry that provides them.
India, with a population of 1.2 could build a massive database of healthy stem-cell donors. Genebandhu, an NGO, is taking that first step towards building a larger database of donors.
Genebandhu started in 2012, when one of Dr Vimarsh Raina's patient succumbed to cancer. Despite being from a well-off family, there was nothing anyone could do to fund the right donor. Dr Raina, who was already running a not-for-profit blood donation organisation, realised that the need for stem cells was greater than the need for blood.
Two of the founding members Kapil Gupta (left) and Dr Vimarsh Raina
The organisation that was Safe Blood became Genebandhu in 2012. Three philanthropists, Dr Raina, Dr Aseem Kumar Tiwari, and Kapil Gupta came together as founding members of Genebandhu. Genebandhu is dedicated to building a database of volunteers who can donate stem cells for quick and affordable treatment for everyone.
How it works
Volunteers give a cheek swab sample that is analysed and stored in Genebandhu's database. This analysis is the Human Leucocyte Antigen (HLA) testing. Each person has a specific HLA type and for a successful transplant HLAs have to match and be compatible.
Once a match is found, the donor needs to begin taking injections that will stimulate the production of stem cells in the donor's blood. After five days, the donor's blood is used to extract the life-saving stem cells to be used for treatment.
Join the movement to build a database that can treat over 120 life-threatening diseases
Genebandhu has received a commitment and untyped samples from 2475 volunteers. However, each HLA test costs Rs 3,000. Due to financial constraints, Genebandhu is seeking help in performing HLA typings for the samples received. Till the HLA typing is done these samples are of no use to any one.
Volunteers donating samples
Their target is to have all 2475 donors HLA-typed so that this information can be used to build a database. Donate now and save thousands of lives in the country.