Thalassaemia patients worried over poor access to standardised drugs

Although Karnataka started a State blood cell last year for treatment of patients with blood disorders, over 10,000 thalassaemia patients continue to face problems.

Although Karnataka started a State blood cell last year for treatment of patients with blood disorders, over 10,000 thalassaemia patients continue to face problems.

The death of two thalessaemia patients in Karntaka over the last week has underlined the lack of access to standardised drugs for this blood disorder.

Three-year-old Sadiq, a thalassaemia patient, was on regular blood transfusion. His mother, a domestic help who lost her husband recently, depended on a philanthropist for his treatment. The toddler died on Sunday without even getting a chance to fight his blood disorder as his mother failed to recognise his deteriorating condition owing to lack of awareness. By the time he was taken to the hospital, it was too late.

Similarly, last week a 29-year-old young mother succumbed to secondary ailments caused by thalassaemia. Although her family was aware of her condition, they could not afford the expensive iron chelation medicine (removal of excess iron from the body that accumulates owing to frequent blood transfusion.)

If the iron chelation medicine is not taken regularly, excess iron will damage vital organs and in her case it affected her liver. She required a liver transplant, which the family could not afford.

Although Karnataka started a State blood cell last year for treatment of patients with blood disorders (haemophilia, thalassaemia, and sickle cell anaemia), over 10,000 thalassaemia patients in the State continue to face problems. Lack of awareness, proper guidance and non-availability of essential life-saving medicine have only added to the misery of patients.

Namitha A. Kumar, a thalassaemic who is part of the Open Platform for Rare Diseases, said many patients are forced to come to Bengaluru for fortnightly blood transfusions and medications as there are a few facilities in smaller towns and villages.

Pointing out that lack of access to standardised drugs has led to two deaths last week, Dr. Kumar said: “Patients from impoverished families do not have sufficient information regarding free treatment centres. They do not even know where to go to collect free medicines. The government should take up thalassaemia as a serious public health concern and arrange patient education programs. We need quality drugs to be made available freely by the government at least to poor patients.”

In Bengaluru, free blood transfusions are available at Rotary TTK Blood Bank and at a centre run by Sankalp, a NGO working for thalassaemia. This NGO also runs a day care for children below 18 years at the State-run Indira Gandhi Institute of Child Health, where blood transfusions are also done. After 18 years, these children do not have a smooth transition since the thalassaemia care at Victoria hospital, another State-run facility, is not good. So adults are left high and dry, she alleged.

Gagandeep Singh Chandok, president of Thalassaemia and Sickle Cell Society of Bengaluru, said the availability of free iron chelation medicine in Indira Gandhi Institute of Child Health is limited to one particular brand. “However, this drug does not suit all paediatric patients. Although the Hemoglobinopathies guidelines and the draft thalassaemia policy released last month clearly say that options such as desferal injection with pumps and desferasirox medicine should be made available, this is not happening,” he said.

“We met the State blood cell’s nodal officer Swatantra Banakar last month, who asked us to submit a list of essential medicines required and details about the infusion pump used by patients,” he said.

On Monday, Dr. Kumar wrote to Vinita Srivastava, national senior consultant and co-ordinator blood cell, National Health Mission, complaining about the non-availability of drugs in Karnataka. Following this, the official wrote to Dr. Banakar and NHM Mission Director in Karnataka asking them to resolve the issue.

No repose to tenders

State blood cell nodal officer Swatantra Banakar, who admitted that standardised iron chelation drugs are not available, told The Hindu that this was because there was no response from big players to tenders floated for procuring the drugs.

“Ever since the blood cell was set up last year, we have called for tenders thrice and every time only local manufacturers who do not meet the tender norms applied. The State Drugs Controller did not approve their eligibility,” he said.

He said alternatives were being chalked out and a decision to release ₹1 lakh to each district hospital for procurement of the required drugs had been taken.

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Printable version | Aug 11, 2022 11:29:18 pm | https://www.thehindu.com/news/national/karnataka/thalassaemia-patients-worried-over-poor-access-to-standardised-drugs/article25105674.ece