Dr. Namitha Kumar
.@JPNadda: Save Our Lives. Regulate supply of life saving drug for Thalassemia
I faced a life-and-death situation 2 weeks ago. I nearly ran out of a lifesaving medicine and I was wondering what to do. I am Namitha, a health researcher who suffers from a rare blood disorder called Thalassemia. In order to live, I need a blood transfusion every month. I also depend on a drug called Desferal without which I will die of too much iron in my blood. For a year, I and fellow Thalassemia patients have faced an on-off supply of this drug. The shortage became worse in August 2016 and most of us are relying on our personal stock of the medicine. I am not alone. There are 1 lakh Thalassemia patients in India. All our lives depend on getting access to this medicine. All of us were worried out of our minds. The medicine is manufactured by Novartis and supplied to patients and hospitals. There is no other company producing this medicine. As of now, the company has solved the problem by making supply available. However, such issues and many others will continue to trouble the thalassemia community unless the central and state government steps in to help and support. I believe the only way to deal with this crisis is government intervention at the national level. I want the central health minister Shri JP Nadda to make life saving drugs for Thalassemia available easily and at subsidized costs through government channels. Please sign my petition so that we can bring pressure on our central government to look into the issues of the thalassemia community. In the long run I demand that the central health ministry include Desferal in the National Essential Drug List and initiate local production of Desferal at affordable rates to all patients. I need the nation to support us through this crisis with your signatures. I too have a right to live and no community should be deprived of life saving drugs.