Earlier this week, a petition addressed to Health Minister JP Nadda raised concerns over the “non-availability” of Desferal, an injectable drug used to reduce excess iron in the blood for people with thalassemia.

Citing reports of shortages, particularly from Karnataka and Delhi, the petition from the National Platform for the Rights of the Disabled (NPRD) sought government intervention to ensure that patients across the country got adequate supplies of the drug manufactured by Novartis.

Independent enquiry by found patient experiences of non-availability of the drug varying from one year in Karnataka to about a month in Mumbai. A situation that spotlights not just the availability of drugs critical for patients with thalassemia, haemophilia, tuberculosis and so on (also faced with shortages). BusinessLine

It also highlights the role of drug companies in ensuring that enough supplies and information gets across to patients.

“The lives of thousands of thalassemics who have to undergo regular blood transfusions are in danger.

“If the drug is not taken regularly, the excess iron that gets accumulated can damage vital organs. Some patients require at least three vials every day,” the NPRD petition said.

Novartis has a “virtual monopoly” being the only company to supply the drug, the petition said, alleging further that “despite the company claiming that they have enough stocks, it seems an artificial shortage has been created.”

Whether there are supply bottlenecks or someone was hoarding supplies, the company needs to take responsibility, said Muralidharan, NPRD Secretary.

He also raised the role of local drug companies who need to venture into making these critical drugs to plug the shortfall. ‘Sufficient stocks’

Novartis, however, said that there was no shortage of Desferal 500 mg injections in the last one year.

“At present, there are sufficient stocks of Desferal 500 mg to meet the needs of patients. The product is not manufactured locally and additional supplies are expected in the third week of September.

“Until then, we are managing with the existing inventory so that no patient goes without Desferal,” a company spokesperson said.

Notwithstanding this, the company added, alternative drugs used in the treatment of thalassemia, namely Deferasirox and Deferiprone, are widely available in the market.

An industry expert pointed out that the drug was off patent-protection and was under price control.

But the limited financial margin on the drug possibly makes it unattractive for other companies to make it, the expert added.

Pointing to the concerns across the country, a person working closely on the issue said that Novartis needed to communicate with patients on the availability of stocks, so that it did not trigger a panic reaction or hoarding. Think Foundation’s Vinay Shetty explains that the injectible is critical especially for those taking blood transfusions, to control excess iron.

The number of people requiring the injectable could be about 5 per cent of the estimated one lakh people with thalassemia in the country, he added. Oral drugs

The injectable (at about ₹170 a vial) is more expensive than the oral drugs, at about a fifth the cost, he said. Each has its use, but oral drugs are seen as being more convenient and get better patient compliance, he added.

Think Foundation is a non-government organisation working for thalassemia patients and supporting voluntary blood donation.

In fact, the availability of drugs is just part of the problem facing thalassemics, he says, referring to the shortage of blood for transfusions.