New Delhi: Over 800 patients suffering from thalassemia, a rare blood disorder, have been forced to buy a life-saving drug as they are no longer available at government hospitals in Delhi.
The reason: Lack of awareness among officials tasked with procuring it.
For almost a year now, Delhi hospitals run by the Aam Aadmi Party (AAP) government have not been stocking Deferiprone, used to treat iron overload in thalassemia patients.
A pack of 50 tablets of the drug is sold for about Rs 400. The dosage,however, depends on body weight. For instance: A 50 kg man will be prescribed 4-5 tablets a day of 500 mg each.
The life-long drug has otherwise been handed out free of cost since 1999 to patients registered with Delhi government hospitals.
The shortage, Delhi government officials say, is because they have cancelled the tender for the procurement of the drug as just one company bid for it.
The only hitch with that reasoning — Deferiprone is sold by just one firm in the country.
The Mumbai-based drug maker Cipla, which sells the product under the brand name Kelfer, has a virtual monopoly on the market. It confirmed that it currently “does not have any live supply contract for Kelfer (Deferiprone) with Delhi-based government hospitals”.
“Kelfer (Deferiprone) has no alternative brands and it is the only one in the category. There are two other chelators but they are for different uses,” said Dr V.P. Choudhary, former head of the haematology department at All India Institute of Medical Sciences (AIIMS).
Even online pharmacies insist that the medicine has no substitute.
Delhi government officials, however, told ThePrint that they believe Kelfer has a substitute. “The last tender being a single tender, it was not approved for procurement,” said Dr Sunil Francis, Additional Director at the Delhi government’s Central Procurement Agency (CPA). “It has been included in the list for re-tender. But a substitute is available.”
Francis said the tender is now expected “to be floated shortly in seven to 10 days”.
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Patients at the receiving end
The uncertainty has left patients struggling to get hold of the drug.
While it is now available at central government hospitals such as Ram Manohar Lohia Hospital and Safdarjung Hospital, Delhi government hospitals such as the Lok Nayak Hospital, the Chacha Nehru Bal Chikitsalaya, and Deen Dayal Upadhyay Hospital among others have run out of stock.
“Over 800 patients are dependent on the Delhi government-run hospitals for the drug. They all have been put at risk of developing severe heart problems, which is the primary reason for death among thalassemics,” Dr J.S. Arora, general secretary at the National Thalassemia Welfare Society (NTWS) and Federation of Indian Thalassemics, told ThePrint.
“For the last two to three years, the supply has remained erratic but for the past year (almost), it is unavailable,” he added.
Why thalassemia patients need Deferiprone
Deferiprone is critical for thalassemia patients as it traps and removes excess iron which is deposited in the body, especially the heart, as a result of repeated blood transfusions.
With every blood transfusion, about 200 mg of iron is deposited on organs. If the extra iron is not removed, it will accumulate and lead to multiple organ failure in the patients in the long run.
Cardiomyopathy — hardening of the heart muscle to pump blood to the rest of your body — due to iron overload is the prime reason of premature death in thalassemia.
“Deferiprone is the best drug to take out extra iron from the heart,” Arora said. “Even in Europe and the USA, it’s primarily used to save the heart of patients suffering from thalassemia.”
According to national guidelines for haemoglobinopathies, it is mandatory for all treatment centres to stock Kelfer (Deferiprone) and other mandatory drugs.
What is thalassemia?
Thalassemia is one of the most common inherited genetic blood disorders in the world. In India, it affects 4 per cent of the population. Every year, about 10,000-12,000 thalassemia major children are born in India who would require blood transfusions throughout life for survival.
According to NTWS, the blood transfusion requirement for a child is up to 1-2 units every month. However, it increases with the age to up to four units every month.
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