Thalassemia patients struggle to find hospital beds, blood
nNEW DELHI: Preeti Talreja, a resident of Vivek Vihar, had to shuttle between two hospitals before she could arrange for her fouryear-old daughter’s blood transfusion after the thalassemia unit at Guru Teg Bahadur (GTB) Hospital closed. The hospital was declared a designated coronavirus disease (Covid-19) hospital on June 2.
Her daughter Mahi was admitted to an emergency ward at Swami Dayanand hospital as her haemoglobin levels were low. “It was a struggle to first get her admitted and then arrange for blood. After we got the bed at Swami Dayanand Hospital for the transfusion, we had to go to GTB Hospital to arrange for the blood.”
Most thalassemia patients who are being treated at government-run facilities in the city are facing the same problem.
Of the 13 government hospitals offering thalassemia care in the Capital, three — Lok Nayak, GTB and Hindu Rao—were designated as Covid-19 hospitals on June 14.
Thalassemia is an inherited blood disorder that causes the body to have less haemoglobin, which enables red blood cells to carry oxygen. Thalassemia patients have to undergo blood transfusion monthly to maintain haemoglobin levels. The blood disorder is listed as one of the 21 disabilities in the Rights of Persons with Disabilities Act, 2016.
Ever since GTB Hospital was designated a Covid-19 hospital, close to 300 thalassemia patients have been struggling to get their blood transfusion done.
Yash Gupta (25), a resident of Bulandshahr, and Soman Madan (32), a resident of Delhi, have been undergoing blood transfusion at GTB Hospital since 1999. Gupta said that he managed to get his transfusion done at Swami Dayanand Hospital after checking with two other hospitals, Madan got his done at a private hospital. But, like Talreja, both had to go to GTB Hospital to get the blood.
Madan said, “It’s a lot of hassle, as we have to first find a hospital which will do the transfusion. We then have to take the blood sample for cross-matching to GTB Hospital, collect blood from the blood bank and then go again to the other hospital for a transfusion. Why can’t the government streamline the process so that we don’t have to do the running around?”
The Delhi government has issued clear instructions along with the list of hospitals where patients can go for transfusion. As per the instructions, hospitals have to inform patients where they can go; hospitals will have to coordinate to arrange for blood for transfusion; patient have to get a donor along with them but in case they don’t have one or emergency, hospitals can’t deny treatment, etc. The list includes All India Institute of Medical Sciences (AIIMS), Safdarjung, RML, Chacha Nehru Bal Chikitsalya, Hindu Rao, Swami Dayanand, Kasturba Gandhi etc.
But most patients HT spoke to said they had to go to GTB Hospital to arrange for blood. A senior doctor at GTB Hospital’s blood bank said that most thalassemia patients are coming to the hospital to collect blood. “Most of our patients are coming here to collect blood for transfusion. We are not able to organise big camps for blood donations during these times. Now that our hospital has become a designated Covid-19 hospital, we can’t ask people to donate blood in-house. We are organising camps once a week outside the hospital to meet the requirement.”
According to NGOS working with thalassemia patients, there are close to 2,500 of them being treated at various hospitals, especially in government facilities, in Delhi. They are now demanding that the government should ensure that people don’t have to run around to arrange blood.
JS Arora, general secretary of the National Thalassemia Welfare Society, said, “In these testing times, patients and their relatives have to run from one hospital to another to check for beds and arrange blood. The government should either have dedicated hospitals where these people can go or put in place a system so that they don’t have to suffer. These are high-risk patients and need a transfusion for survival.”
When contacted, Dr SK Arora, additional director, Health, Delhi government, admitted that there were problems initially, but now things were streamlined and he was personally monitoring the situation.
“We are issuing repeated instructions to all hospitals to accommodate thalassemia patients registered at Lok Nayak and GTB hospitals without any resistance, along with instructions regarding the availability of blood,” he said.