Thalassemia patients complain of shortage of life-saving drug that removes excess iron from blood

For about one month now, 19-year-old thalassemia patient Afsana Ahmed*, from Bangalore, has not been administered an injectable drug that removes excess iron accumulated in her body as a result of frequent blood transfusions.

“We are worried that she may suffer from an iron overload,” said Syed Ahmed, her father, who contacted several chemists and doctors in India to try and get the drug, called Desferal.

Thalassemia is a genetic blood disorder that makes the body produce less haemoglobin. The resultant low red blood cell count causes mild to severe anaemia, and patients thus require blood transfusions. However, increased iron, a possible consequence of the transfusions, can damage vital organs.

Desferal helps reduce the iron accumulation in the blood. Global pharmaceutical giant Novartis is the only one that manufactures the drug in India and patients that Scroll.in spoke to from several Indian cities complained of difficulty in procuring the drug for five to six months now.

Though there are other oral medicines available, doctors said for severe cases, such as Youssara’s, Desferal is most effective. “She is already on an oral pill, which also removes excess iron from her body, her doctors said she requires two vials of the injectable drug every day for a minimum of 20 days every month,” her father said. “For some reason the oral drug is not very effective and she needs Desferal.”

An iron overload, caused by the accumulation of excess iron, can be potentially fatal. Dr Dipanjan Halder of the Wockhardt Hospital in Mumbai said: “The excess iron tends to get deposited in the liver, heart which can lead to severe complications and even death.”

The body has no natural mechanism to remove iron. Doctors said the most common complication of iron accumulation is that it can harden the heart muscles, affecting the organ’s pumping capacity, which can also cause death.

Artificial scarcity?

Novartis, however, denies that there is any shortage of the drug. “Please note that there has been no shortage of Desferal 500 mg injections in the last one year,” the company's spokesperson told Scroll.in in an email response. “[The sufficient stock] notwithstanding, please note that alternative chelation drugs [used to remove iron from body] used in the treatment of thalassemia, namely Deferasirox and Deferiprone, are widely available in the market.”

Deferasirox and Deferiprone are both administered orally.

Activists working for better accessibility to life saving drugs alleged that the sudden non-availability of Desferal suggests that an artificial scarcity has been created to push up drug prices. At present, 10 vials of the drug cost Rs 1,676.

“We don’t have any proof of this but the company should explain how patients are not getting the drugs if they have enough stocks,” said Murlidharan, a secretary of the National Platform for the Rights of the Disabled, who has written to the Union Ministry of Health on the issue.

He said that the government should intervene to make life-saving drugs such as this more accessible. “A shortage is bound to happen if only one company manufactures the drug,” he said. “The government should look at manufacturing these drugs to have an uninterrupted supply.”

Doctors said this is not the first time that the drug has disappeared from the market. “On various occasions, my patients have had difficulty in getting Desferal,” said Dr Rashid Merchant, a paediatrician who treats several thalassemia patients in Mumbai. “It is the first drug that came into the market and it is so far the most effective. Not all patients need it, but in emergency situations, it is the only option, especially when the iron overload cannot be treated with oral drugs.”

Sameer*, a 22-year-old thalassemia patient from Bangalore, requires four vials of Desferal thrice a week, along with his daily oral pills. “I have been trying to get Desferal for the past month but the supplier from the company said it is not available,” he said.

Hoarding concerns

Patients said the shortage could have led to the hoarding of drugs that black-marketers are now selling at a higher MRP. “I had got several calls promising to arrange the drug at a premium,” said Namitha Kumar, 38, a resident of Bangalore, who was offered the drug at twice its price. Kumar, who said she had repeatedly contacted the company for the drug, managed to get 30 boxes of it on Tuesday. “They [Novartis] have promised us that the shortage will soon be over.”

At the time of writing this piece, the company officials said they were making arrangements to supply the drug to patients who had complained to them.

Kumar said that calls offering the drug at higher prices had been made to several patients in Bangalore, indicating that a larger racket could be operating. “Many of us got calls, which means the information on thalassemia patients was available with the person trying selling us the drug,” she said. In the past too, a similar shortage had compelled Kumar to ask her aunt in the UK to ship Desferal to her.

Signs of shortage

In Rajasthan, where about 2,000 thalassemia patients are registered with the government, the shortage has become apparent only now. “Some patients recently complained to us that the drug is not available,” said Naresh Bhatia, president of the Thalassemia Children Society in Jaipur. “As the government here provides the drug to patients free of cost, they usually buy it in bulk, and so we did not face any major shortage. In the last three days, I got calls from patients that they had to return empty-handed from government hospital as there was not enough stock.”

Patients in West Bengal also complained of a similar crisis. “The drug has not been available for the past three months and most patients are depending on oral drugs,” said Tapas Sengupta, who runs the Thalassemia Society of India in West Bengal. “We have asked the company but they told us that there is some policy issue with the government which is causing the shortage. I don’t know how true it is.”

*Names have been changed to protect identities of the patients.