Centre for Health Ecologies and Technology


Advocacy for Thalassemia Drug

The drug Desferal is a life-saving drug used by people with Thalassemia. Thalassemia is a rare blood disorder caused by a mutation in the globin gene which affects haemoglobin production. People with thalassemia require monthly or bi-monthly blood transfusions along with regular iron chelation to remove excess iron caused by blood transfusions. Desferal is an injection used via an infusion pump which is critical in maintaining the health of people with thalassemia. This drug is produced and marketed in India by Novartis. Novartis has a captive market for Desferal in India.

Since almost a year, the thalassemia community has faced on-off shortage of this drug in the Novartis depots. No reason was given for the shortage and the short supply of this life saving drug was impacting the health of the community. In August 2016, the shortage was felt acutely in Bangalore, Mumbai, Pune, Ahmedabad, Delhi, Rajasthan, Odisha and Hyderabad. In this context, Prof. Vijay Chandru and Dr. Namitha Kumar stepped in to solve the problem at a larger level. The matter was brought up to the joint secretary of pharmaceuticals, union government by Prof. Chandru. At the state level, Dr. Kumar brought up the issue with the principal secretary, health and family welfare and state drug controller.

This issue has since then received wide media attention after which Novartis stepped in to solve the problems with the stocks. The situation is yet to normalize with regular supply but a temporary intervention has been made to avoid health crises in the communities.

Media reports: