National Thalassaemia Welfare Society Patient Advocacy Feat - World Patients Alliance

National Thalassaemia Welfare Society Patient Advocacy Feat

Patient Advocacy Triumphs as Indian Government Revises Blood Charges for Thalassemia Patients

New Delhi, January 5, 2024

In a significant victory for patient advocacy and the relentless efforts of the National Thalassaemia Welfare Society (NTWS) of India, the Drugs Controller General of India has revisited its policies on blood charges, taking a landmark decision to waive all charges except processing costs on blood units for thalassemia and sickle cell patients.

The General Secretary of NTWS, Dr. JS Arora, played a pivotal role in championing the cause for affordable  and accessible healthcare for thalassemia patients. Dr. Arora emphasized the financial burden faced by patients, particularly in private hospitals where transfusion costs ranged from Rs 3000 to Rs 20000 per day, encompassing not only the units of blood issued but also additional charges such as day-care and nursing fees.

“If we talk about charitable blood banks, even after giving free blood to thalassemia and sickle cell patients, they are sustaining very well. Many private hospitals, on the other hand, are charging exorbitant fees. The government should not only decide the blood charges, but they should also issue guidelines for transfusion charges. This will help patients who take blood regularly," expressed Dr. JS Arora, highlighting the urgent need for regulatory intervention.

The advocacy efforts of NTWS, a member organization of the World Patients Alliance, drew attention to the challenges faced by thalassemia patients in accessing affordable blood transfusions. Dr. Arora’s persistent calls for a more equitable healthcare system resonated with the authorities, prompting a revision in the notification to waive charges for blood units, except for processing costs.

This transformative decision by the Indian Government is a testament to the power of patient advocacy and the unwavering commitment of organizations like NTWS to champion the rights and well-being of individuals affected by thalassemia. The revised policy not only addresses the financial strain on patients but also sets a precedent for a more inclusive and patient-centric healthcare approach.

The World Patients Alliance commends the National Thalassaemia Welfare Society and Dr. JS Arora for their tireless efforts in advancing the cause of patient rights and ensuring equitable access to essential medical services. This victory marks a significant step towards a more compassionate and affordable healthcare system for thalassemia patients across India.

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In Unity for Patient Advocacy, World Patients Alliance