Namitha, a thalassemia patient in Bengaluru, is glad that she was able to arrange for her own blood donor on March 23, before the nationwide 21-day lockdown, and undergo the transfusion patients like her need every fortnight. Others like her, she says, are less fortunate.

“Due to social distancing protocols, there have been no blood donation camps in the city in the last two weeks. The blood banks are running very low, and so, they are asking us to arrange our own blood donors if we want to undergo transfusion. While I was able to get done with mine, there were some others whose donors were stopped by the police on Monday and Tuesday, and prevented from going to the blood banks,” alleges Namitha, who is the head of advocacy at city-based Open Platform for Orphan Diseases, a non-profit which is mainly for people with haematological disorders.

Thalassemia is a hereditary blood disorder which prevents one’s body from making enough haemoglobin. This results in a large number of oxygen-carrying red blood cells being destroyed, causing anaemia. The patients have to keep undergoing blood transfusions, or get a bone marrow transplant – an option which is neither viable nor accessible for many.

The 21-day lockdown to contain the COVID-19 pandemic has thrown life out of gear for many, but for those with chronic illnesses such as thalassemia, it could potentially be life-threatening.

Shortage of blood

Dr Narasimha Swamy L, the medical officer in-charge at Rotary TTK Blood Bank in Bengaluru, says that while they could earlier supply to around 27 storage centres on a weekly basis, and give 20-30% of their monthly collections to government hospitals, they are now unable to sustain that. Their collection of around 3000 units of blood monthly has now fallen to around 500-600 in the month of March.

“Earlier, we didn’t refuse anyone. One could just walk in and get a transfusion. But because of the situation we are in, we have to ask for replacement. So, when thalassemia patients need a transfusion, we are compelled to ask them to bring a donor because we are scarcely stocked,” Dr Swamy tells TNM.

Gagandeep Singh Chandok, the president of the Thalassemia and Sickle Cell Society of Bengaluru, says that this is the case with most blood banks in the city. “We are getting calls from patients who are not getting blood for their transfusion. Hospitals and blood banks are shutting down their transfusion centres because of the shortage. And the priority for blood banks right now is to provide blood for those undergoing surgery. While that’s understandable, we are in a difficult position because of this.”

Unavailability of life-saving medication

Gagandeep says that there are life-saving iron chelation medications they require – tablets, and an injectable. Novartis manufactures both – the drugs are called Asunra and Desferal respectively. Now, they are either unavailable or running out in the city.

Namitha explains that under the government’s National Health Mission Blood Cell, a program was set up to provide these medications at certain hospitals in Bengaluru like the Indira Gandhi Hospital, Vanivilas Hospital, Sir CV Raman Nagar General Hospital and KC General Hospital.

“However, the state government had to renew the tender for the same for Novartis, a pharmaceutical company that was supposed to provide Desferal. But because of the lockdown, that has not been done, and this medication is now running out at the hospitals, and even finished at most of the places,” says Gagandeep.

Additionally, the police, at the beginning of the week, forced Novartis’s retail outlets to down its shutters. “Desferal comes in a set of 10 vials, and we can only collect it from a designated hospital pharmacy or from the Novartis retail outlets. It’s not available elsewhere. Some patients have to take it 4-5 times in a week. And now this is not available,” Gagandeep rues.

Namitha and Gagandeep say that these medications are costly, and it is not possible for everyone to stock up on them for months together – which makes the difficulty in accessing them as well as their shortage a life-threatening situation for those living with thalassemia.

However, an executive of Novartis said that things are slowly coming back to normal with the retail outlets, and that they will be allowed to remain open.

Appeal to the authorities

On March 25, Gagandeep sent an email to the Health Minister of Karnataka highlighting these problems. An email was sent to the Commissioner of Police as well, requesting police personnel to not stop the donors from traveling to blood banks and allowing retail outlets like Novartis and Cipla to remain open. However, they have not received a response so far.

In their capacity, the blood banks have started issuing letters which can be sent to donors and thalassemia patients explaining why they need to venture out and come to the blood bank. However, the fear of being stopped and questioned may still stop many from coming to donate blood, thalassemia patients say.

“We want the government to replenish the medication we need at hospitals, and for the hospitals to put in a protocol that will allow us to buy these medications quickly. In some hospitals, the procedure and waiting time is over an hour. We also want for Novartis and Cipla to be allowed to deliver the required medication to our homes. Asking a person with a vulnerable health condition to go and collect medicines, or waiting at the hospital, will increase the risk of them being exposed to the novel coronavirus also,” Gagandeep says.

The patients are also appealing to the government to encourage people to safely donate blood. “All blood banks have put in safety and distancing measures for donors to safely donate blood in their premises. Blood banks like Rotary TTK blood bank are NABL (National Accreditation Board for Testing and Calibration Laboratories) certified and follow the highest standard of hygiene in their premises, for staff, donors and patients. Plus we now have additional questionnaire check, fever check and clinical examination of each donor before donation,” the letter to the Health Minister said.

“It is our most humble request to you to consider issuing a Public Appeal through print and electronic media, to motivate and guide people for donating blood for the survival of thalassemics who have no other alternative to blood,” it added.