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Submitted by PatientsEngage on 12 September 2016

Bangalore based Dr. Namitha A. Kumar, a person with Thalassaemia, reports on the acute shortage across the country of Desferal, a survival drug for patients with thalassemia. On behalf of the patient community, she implores the Union Government to intervene to address uncertainty and ensure clear communication on continued supply of the drug to patients.

Thalassemia major patients in India are more than 100,000(1 lakh) in number. We depend on monthly or bi-monthly blood transfusions to survive along with a iron chelator to remove excess iron from transfusions. Nearly 80% of the community depends on Desferal, an injection vial to remove iron as we are allergic to alternative oral medications. This drug has a captive market in India with Novartis being sole producer and supplier. The drug patent expired in 2005 and there are generic versions available in the US and EU. 

https://www.drugs.com/availability/generic-desferal.html

Unfortunately no low-cost generic version is available in India.

Since almost a year, we have been facing on-off acute shortage of desferal across the country. Last year 2015 october we faced a similar issue. Somehow it got resolved. 

This year, the shortage has been really severe. The entire month of August we were unable to get the drug in Bangalore, Delhi, Ahmedabad, Pune, Mumbai and Kolkata. Hyderabad novartis as well as the thalassemia society seem to be hiding the truth. In Chennai, Dr Revathi Raj from Apollo has stated that there is no shortage. The same doctor had reached out to us last october for the drug as she had 3 bone marrow transplant patients. 

My Story

Now for my bit in this story. I am completely dependent on this drug and at least 70% of our thalassemia patients in Bangalore were desperately searching for the drug without getting it. We are not getting any information on the arrival of the drug. There was no explanation from anyone.

I sent off complaint letters the state principal secretary for health and family welfare Dr Shalini Rajneesh who directed the state drug controller to check for compliance. The report by the drug controller attached. Novartis Bangalore had just 40 vials when some single patients require that amount per month. Most patients require 10-100 vials per month so this fact is proof of acute shortage.

After the article in the Hindu http://www.thehindu.com/news/cities/bangalore/thalassaemia-patients-worried-about-shortage-of-lifesaving-drug/article9042602.ece on 28th Aug, Novartis contacted me saying some limited supply is available and I got 3 boxes. Since then a few more newspapers have contacted Thalassaemic societies in various cities and many have given statements regarding shortage which has been denied by Novartis. 

When Dr.Mahammed Ariz Ahammed IAS, Joint Secretary to Government of India, Department of Pharmaceuticals wrote an email to Novartis India management, they have responded and got in touch promising more stocks to Bangalore and explaining the reason for the shortage to be a change in global manufacturing facility. They were supposed to be prepared for the shortage but claim that there was surge buying up by "unknown entities" due to which there was this shortage. Novartis provides this drugs direct to patient societies and also to hospitals so I can't understand how this happened. 

They have also said that alternatives are available but for a lot of the thalassaemia patients, the alternatives do not work. 

NPRD - National Platform for the Rights of the Disabled has taken up our case. Desferal is already in the National Essential Medicines list. This is a nationwide problem. Now the Union Government needs to investigate the short supply and take measures to ensure such an occurrence is not repeated. 

Latest update as of 13th Sept: http://toi.in/8LKWKb/a19ai

My petition on change.org. Please support and share it: http://goo.gl/AtOuJq