An 11-year-old female patient with Thalassemia Major was referred to DATRI in Sep 2021 by a transplant centre (TC) physician for HLA matched blood stem donor search request for a transplant. Our search team did a preliminary search from our database and found a 26-year-old man as a suitable match. He is the only potential match for this patient.
As requested by the transplant centre physician, we have initiated donor counselling and this donor has agreed to donate his Blood Stem Cells. We have communicated the same to the TC physician, but unfortunately, this work-up was kept on hold due to patient-related reasons. In March 2022, we again received a request from the TC physician, asking us to re-connect with the donor to check his availability in April for the PBSC donation. We checked with the donor and he has agreed to proceed further.
To ascertain the current validity of this possible match, another test was conducted. A close match between a donor’s and a patient’s HLA marker is essential for a successful transplant outcome. As expected, the match was confirmed by this additional test. Subsequently, donor & patient consent was obtained and the blood stem cell work up was initiated. Imaging test was planned for this donor this time at the donor’s location as he was unable to travel to any other location due to his work commitment. Our donation manager diligently found a clinical hematologist near the donor’s location and scheduled an appointment for the donor’s medical evaluation and Imaging studies.
Health reports and Viral markers reports were shared with our medical director and he reviewed the reports and approved to proceed the workup with this donor. The donation date was finalized based on the donor and Apheresis centre (AC) physician’s availability. TC Physician also agreed on the collection date. Donor final clearance form from both AC and TC was obtained and we coordinated everything from our side for the collection with utmost care. A donation kit was dispatched to the collection centre and even the donation certificate was kept ready. The donor’s travel arrangement was planned.
We raised an invoice to the patient family for the payment towards PBSC donation and waited for further updates regarding the payment. Three days before the mobilization, the patient’s attender called us and checked whether DATRI will provide the blood stem cell if they change to another hospital/Transplant center.
We immediately connected with TC physician and to add to our surprise, even the treating physician was not aware of this. The patient family was in a dilemma to change the hospital without discussing this with the treating physician. The transplant center physician discussed this issue with the patient family and they came to know someone had given the patient family false information that the Indian government will provide funds to the patient if they get treated in another hospital. The family decided not to go with the centre.
So, we couldn’t able to complete this collection as planned, as we didn’t receive the financial commitment from the patient family. Nevertheless, we have planned everything perfectly from our end, this collection did not happen due to patient-related reasons. Though all our efforts have gone in vain, we never stop ourselves from our mission to save the lives of those suffering from fatal blood disorders. And now, we are proudly marching towards 1000 collections…our life-saving journey never ends.
DATRI Blood Stem Cell Donors Registry, a not-for-profit organisation, has facilitated more than 1001 Blood Stem Cell Donations to date. The journey began in the year 2009 to find unrelated matched donors for patients with leukaemia, Thalassemia or blood disorders whose life is dependent on an unrelated donor to survive. DATRI, India’s largest Blood Stem Cell Donors Registry, has more than 4,83,763 donors registered. DATRI is working towards creating a wide and diverse database of potential Blood Stem Cell Donors that can be accessed by any patient living anywhere in the world in need of a Blood Stem Cell Donation. Any healthy individual between the age of 18 years to 50 years can register as a blood stem cell donor with DATRI and potentially become a lifesaver when they’re found to be a match for a fatal blood disorder patient.