Dr. Venkatesh Ekbote, Director of Clinical Hematology & BMT Services at Kamalnayan Bajaj Hospital, Aurangabad, sheds light on the numerous challenges parents face while searching for a matching blood stem cell donor for their child. The journey is not only medically complex but also emotionally and financially draining.
Financial Burden
The foremost challenge is the financial burden. Caring for a child with thalassemia is expensive. The cost of frequent blood transfusions, medications, and hospital visits can quickly add up, straining a family’s finances. Moreover, once a matching donor is found, the actual bone marrow transplant cost can be prohibitive, with few social security nets available to cover these expenses.
Emotional Burden
The emotional toll on parents is immense. They are constantly striving to improve the quality of life for their child, who often misses school and other activities due to frequent medical treatments. As the child grows older, they may struggle with compliance to medication, seeking explanations for their condition and the limitations it imposes on their life. Parents also face the added pressure of dealing with the social stigma associated with genetic diseases, which can be isolating and demoralizing.
Social Support
Dr. Ekbote emphasizes the need for societal support for these families. Communities should come forward to provide logistical, emotional, and financial assistance. By standing by these families through the various stages of treatment—from initial therapy to donor searches and transplants—society can help alleviate some of the burdens they face.
Fundraising and Lack of Social Security
After finding a donor, the challenge of fundraising begins. In Maharashtra, no transplant programs are covered under any government scheme, leaving families to rely on their own funds or seek help from charitable organizations. This fundraising process requires significant time and effort, adding to the mental and physical agony parents already endure.
Appeal to Government
Dr. Ekbote makes a heartfelt appeal to the government of India and the government of Maharashtra to include thalassemia transplants under the rare disease program. Funding these transplants through government programs would help many families in resource-constrained countries like India to access life-saving treatments.
Conclusion
The journey to find a matching blood stem cell donor for a child is fraught with challenges. From financial and emotional burdens to the need for greater societal and governmental support, parents face a daunting path. Dr. Venkatesh Ekbote’s insights highlight the critical need for comprehensive support systems to help these special families navigate this difficult journey.
By addressing these challenges and providing the necessary support, we can make a significant difference in the lives of children with thalassemia and their families.
About DATRI:
DATRI Blood Stem Cell Donors Registry, a not-for-profit organisation, has facilitated more than 1401 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 5,59,517 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.
For more information about thalassemia click the links below to watch Dr. Venkatesh Ekbote’s interview