New Delhi: Thalassemia patients at Delhi’s government hospitals are grappling with a “double whammy” amid a shortage of Desferal (deferoxamine mesylate) and a looming 50 percent price hike for the life-saving drug approved by the National Pharmaceutical Pricing Authority (NPPA).
While the hike was approved on 14 October, it is yet to be implemented. However, patients at Deen Dayal Upadhyay, Ram Manohar Lohia, Lady Hardinge and Sucheta Kriplani hospitals fear the economic burden it will add, especially as they are already forced to purchase the drug from outside sources due to its unavailability in hospitals.
Doctors and nurses at Deen Dayal Upadhyay Hospital confirmed the shortage of Desferal. “There’s no supply right now, and the hospital staff are doing their best to manage the situation. Even the senior doctors, including the MDs, are personally involved. We’re hopeful the drug will be available soon,” Dr Arun Kumar, head of the hospital’s pediatrics department told ThePrint.
“In the meantime, we’re using oral medication to reduce iron levels, which has been a long-standing alternative. The issue lies with Novartis, the company supplying the drug. They haven’t been able to provide it, though I’m not sure why.”
He added that despite the shortage, they’ve made sure that the treatment continues and patients are receiving care.
A senior official in the Union health ministry, who did not wish be to named, said a key reason why the Thalassemia drug is in short supply could be limited production by the manufacturer. “The company has been pushing the government to raise its ceiling price citing unviability of the current price limit as the production cost is higher than the procurement and retail prices.”
A delay by the NPPA to approve the price hike has the meant that Desferal production has slowed down over the last several months, leading to shortage in many parts of the country, the official added.
However, pharmaceutical giant Novartis, which manufactures Desferal in India, has said that there is no shortage in supply.
“This is to confirm that currently there is no shortage in 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 and there is no disruption in the availability of the medicine,” the company spokesperson told ThePrint.
ThePrint has also reached the spokesperson for comment on the government official’s claims. This report will be updated when a response is received.
Advocate Anubha Taneja Mukherjee, member-secretary of the Thalassemia Patients Advocacy Group (TPAG) in New Delhi and a thalassemia patient herself, has been actively assisting patients in affording essential medications. She highlighted how Desferal, not included in the Ayushman Bharat scheme, poses an additional challenge for many patients who cannot afford the drug.
ThePrint reached Delhi government for comment, but no response was received.
‘Time-tested drug’
Desferal (deferoxamine mesylate) is used alongside other treatments, such as inducing vomiting with syrup of ipecac or stomach wash to treat acute iron poisoning. It is most effective when administered immediately after iron ingestion.
Additionally, it is used to help remove excess iron in patients with elevated iron levels from frequent blood transfusions. Desferal, an iron-binding agent classified as a heavy metal antagonist, works by aiding the kidneys and liver in eliminating excess iron. This medication is not recommended for children under three years of age. It is also called an ‘iron chelator’.
Dr. V.K. Khanna, director of the Institute of Child Health and Pediatrics at Sir Ganga Ram Hospital, who has over 40 years of experience working on thalassemia, explained that Desferal is a reliable, time-tested drug. However, it’s ineffective when taken orally.
“The issue with Desferal is that it has to be administered via injection, and the process is quite demanding,” he said. “Patients need to take the injection over 8 to 10 hours, usually at night, using an infusion pump. They typically sleep while the injection is being administered and remove it when they wake up. While they might not be fully aware of it during sleep, the process is both traumatic and painful. And yes, it’s also expensive.”
Dr. Khanna further highlighted the financial and physical toll that Desferal treatment imposes on thalassemia patients. “One vial of Desferal costs around Rs 181. A child weighing about 25 kg would need two vials per day, five days a week. This becomes quite expensive, not to mention the trauma involved in daily injections.”
He added: “The treatment requires a pump, which costs around Rs 40,000, though through associations and NGOs, it can be reduced to Rs 34,000-35,000. Even with this assistance, it’s a significant financial burden. We try to ease the pain by allowing the children two ‘rest nights’ per week without injections, but the rest of the nights are painful and difficult for them. Ideally, they should receive the treatment every day, but we make exceptions to provide some relief.”
He also mentioned that the use of Desferal has decreased due to the availability of other oral drugs, which are less expensive and less painful. Desferal is generally used in combination when the other drugs are not effective.
Unavailability and affordability
A 19-year-old patient from Delhi was diagnosed with thalassemia, when she was just six months old and has been receiving treatment at Deen Dayal Upadhyay Hospital ever since. According to her mother, they have been unable to get Desferal at the hospital and have had to borrow money from multiple people to purchase it elsewhere.
“The doctors aren’t prescribing it, even though my daughter needs it,” her mother said. “I took her to Ganga Ram Hospital for a free check-up, where Dr. Khanna advised that she requires Desferal injections because her creatinine levels have reached 12,000.” She also mentioned that the alternative treatment, Calphar tablets (alternative drugs), causes her daughter joint pain and vomiting.
“As a housewife, and with my husband working as a security guard, we live in a rented house with limited income. He earns around Rs 10,000 to Rs 12,000 a month. But for our child, we have no choice, but to somehow manage. We have no other option,” she added.
Another patient at Lady Hardinge Hospital informed ThePrint that even though the doctor has prescribed the injections, they are still not available at the hospital, which is why he had to arrange it from elsewhere at the price of Rs 1,850. “One box which contains 10 vials, I need three vials everyday for five days a week. It becomes very difficult to afford.”
Two other patients undergoing treatment at Ram Manohar Lohia Hospital also echoed the same concerns. “It’s been difficult for our family,” one patient shared. “My father runs a small shop, which is our only source of income. For the past five years, this shortage has been a recurring issue. The drug isn’t always available, now they are asking to arrange either from the society or buy from the outside.”
However, Dr. Ajay Shukla, director and medical superintendent at the hospital, said in an interview to ThePrint that there has been no shortage of Desferal at their facility.
But Dr. Ritika Sud, a professor in the department of medicine and incharge of the thalassemia unit at Lady Hardinge and Sucheta Kriplani hospitals, confirmed that the drug has been unavailable for several months. She noted that the hospital has been making efforts to procure Desferal, but it has not been accessible through government supply channels.
Novartis’s monopoly
Shobha Tuli, founding member of Thalassemics India, an NGO working nationwide for thalassemia patients, highlighted that the shortage of Desferal is not limited to Delhi, but is affecting those undergoing treatment in other parts of the country as well.
“Last year, our association purchased 23,000 vials of Desferal from Novartis. This year, however, we’ve only managed to buy 7,000 vials so far, and with just a few months left in the year, it’s clear we won’t reach last year’s numbers. This indicates a definite shortage,” she said.
She further explained: “A major issue we’re hearing from Delhi hospitals is that while oral chelation drugs are procured by the hospitals, then why not Desferal. Such medicines are provided free of cost to those patients who undertake blood transfusions in the government hospitals. Since Desferal is an essential drug listed by the WHO (World Health Organisation) and included in the National Essential Medicines List (NLEM) by the Ministry of Health, it should be available without shortage, especially in district hospitals. Essential drugs like these need to be accessible to patients at all times.”
She added that Novartis is the sole manufacturer of this injectable chelation medicine, and thus holds a monopoly, which needs to be addressed by the company itself.
Novartis, which has had a “significant footprint in India since 1947” through its two legal entities—Novartis Healthcare Private Limited and Novartis India Limited—has denied all allegations regarding the drug shortage.
According to the company’s website, India is one of a select few countries with a broad Novartis presence, featuring four divisions: Pharma International (commercial operations), Development (drug development), Biomedical Research, and Operations.
India also hosts Novartis’ largest global site, one of six centers worldwide. The company has reached nine million patients across the country and employs approximately 8,300 people in India.
(Edited by Mannat Chugh)
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