NEW DELHI: A nationwide shortage of a crucial, life-saving drug has left thalassemia patients in India struggling for treatment, say patients and advocacy groups.
India is often called the thalassemia capital of the world, with an estimated 1,00,000 to 1,50,000 patients. About 20 to 40 per cent of them rely on the injection desferoxamine, sold as desferal, by Novartis in India.
The non-availability of desferal injection is mainly due to public procurement or tendering-related issues, which is having adverse impact on the health of patients, said patients, who spoke with TNIE on condition of anonymity for fear of backlash.
The shortage of this essential drug, which is provided free of cost, in government hospitals, has been continuing for the past five years, forcing many to buy the costly drug from the market, they added.
Desferal is a proven, life-saving treatment used worldwide for decades. It greatly improves survival for people with thalassemia, a genetic blood disorder that lowers haemoglobin levels and can cause anaemia, fatigue, and organ damage. The drug is included in the 2022 National List of Essential Medicines (NLEM).
A Delhi-based patient, who wished to remain anonymous, said, “It’s unfortunate that while the drug can be bought from chemists, it’s not available in government hospitals.”
Patients in Delhi said they are unable to get the injection in any of the government hospitals – from LNJP, Sucheta Kriplani Hospital, Lady Hardinge Medical College, Safdarjung Hospital etc. “We are forced to buy the injection in black, which should ideally be available to us free of cost.”
According to Gagandeep Singh Chandok, President of the Thalassaemia and Sickle Cell Society of Bangalore, Desferal is not available in any government hospital. “I am getting desperate calls from patients. This situation has been ongoing for five years. Sometimes, there is a supply, and then there is none. For the past two weeks, Desferal has not been available in Karnataka, and the situation is the same in other southern states.”
He said the centre provides funds, and states must procure the drug through tenders, but Novartis has refused to participate in the tendering process. “The state is also not putting pressure on them.”
He said as a result, the prices of the injection have gone up.
Novartis, however, says there is no shortage of the drug.
“This is to confirm that currently there is no shortage in the supply of Desferal in India. We understand the importance of continuity in the treatment of patients living with thalassemia and have been taking all necessary steps to ensure that there is adequate supply to meet the demand of the medicine, and there is no disruption in the availability of the medicine,” a Novartis spokesperson told this paper.
Till the time of going to press, there was no official response from the Union Health Ministry. However, ministry officials denied there is any shortage and said they will examine the issue with the states.
Speaking with this paper, Deepak Chopra, President, Thalassemics India, said, “As we move closer to the International Thalassemia Day on May 8, we feel compelled to sit up and take note of the case of missing essential life-saving drug - desferoxamine - which has failed to catch the attention of the authorities for years now”
“Thalassemia patients have been sending representation after representation, but the drug fails to make it to government hospitals. It is high time the government considered generic versions of this drug, as it's been off-patent for decades. We can’t lose our children to drug shortages and still claim to be the pharmacy of the world,” he told this paper.
On Novartis' response that the drug is available, Chopra said: “It is very easy to hide behind a hollow half fact that the drug is available. Can you tell a daily wage labourer’s thalassemic child who goes to a government hospital that he should go and buy one vial for over Rs 150 from a chemist? Government should set up an inquiry into why the company doesn’t participate in tenders and how they are allowed to control supply of an essential medicine.”
Advocacy groups said they have highlighted the issue with the Union Health Minister JP Nadda and the ministry several times, but have not got any positive feedback.
Thalassemia Patients Advocacy Group had written to the health minister on February 2 this year, once again flagging that deferoxamine is unavailable for public procurement for years now and to promote generic medicine instead.
“The government must convince the company to participate in the tender. How can they just be allowed to have their way and sell an essential medicine only in the market. Also, hospitals must exercise the temporary solution of local purchase from the market,” said another patient from Delhi.
Lalith Parmar, director in the Bangalore-based Bal Ayush Foundation, a foundation that works for child healthcare, said, “About 3,000 patients in Karnataka need Desferal injection, and there is always a constant shortage of the injection. The injection is available on and off, and not consistently.”
The drug costs about Rs. 180 per vial, making the monthly cost nearly Rs. 21,000 for adults needing multiple daily vials.
Without the injection, ferritin levels can reach 8,000 ng/ml (normal is below 1,000 ng/ml), leading to severe health risks. “In such a scenario, the patients are prone to cardiac failures and other complications,” said a patient from Odisha.
A Hyderabad-based NGO director, who refused to be named, said, “We purchase the injection from Novartis under the state’s health scheme (Dr YSR Aarogyasri Health Insurance Scheme) and provide it free to children.”
Advocacy groups say there is no national registry for thalassemia patients, which makes it hard to know how many people need the drug.
Most people with major thalassemia depend on regular blood transfusions, often every two weeks, to survive. Repeated transfusions cause iron overload, the main cause of death in thalassemia patients, so iron chelators are used to prevent it.
An Odisha patient said, “Desferal is the oldest and still among the most effective iron chelators. But sadly it is not available for us all the time.”
Thalassemia is a disability under the RPWD Act, 2016, with special provisions for priority treatment.