Tania Vaswani (name changed) suffers from thalassemia major and requires the life-saving drug Desferal — an injection that checks the iron overload in the body due to frequent blood transfusions. “I am getting married next month and have been on intensive therapy. For last two months, there has been a shortage and due to this, the iron levels in my body have shot up,” she said.
While the supply was restored three days ago, patients like her have suffered a harrowing time. “There is alternative medicines which are drugs to be taken orally. But they really don’t suit me and I face many side effects,” she said.
Tania, who has to take four vials of the injection daily, pays Rs 600 each day for this expensive drug. One box has 10 bottles and costs Rs 1,500 and not many can afford this injection.
However, it is a life-saving drug, said Ramesh Arora, vice-president of Thalassemia Society of Pune, which has registered 300 members. The number of people taking this injection may be less but it is vital that it is available. “It has not been available for some time. While we were told the supply has been restored, the shortage currently still persists in some areas,” he added.
Vandana Chavan, NCP leader, had written a letter on September 12 to the Union Health Minister J P Nadda about the non-availability of life-saving drug Desferal. “Over a lakh patients depend on this drug across the country. It is widely used to remove iron in the body that accumulates due to frequent blood transfusions. If not taken regularly, the excess iron can damage organs,” the former MP from Pune wrote to Nadda.
Meanwhile, an update on the newer management and treatment regimes, prevention strategies and possible cure (gene-therapy) and latest methodologies for its treatment by bonemarrow transplant and stem cells will be discussed at the sixth international conference on thalassemia on September 24 and 25 in New Delhi.
The conference will be organised by the Thalassemia International Federation and ministry of health and family welfare.