Patna: “My sister died; even I will if I do not get blood,” says seven-year-old Sonam Kumari, who was spotted playing with a doll at the newly built day-care centre at the Patna Medical College and Hospital (PMCH) in Bihar. Sonam’s eyes bulge, she has thin legs and an IV tube had been inserted into her right hand. At PMCH, many children – mostly under ten years of age – can be seen with all the signs that accompany a thalassemia patient.
Sonam, a thalassaemia major patient, lost her younger sister to the dreaded disease on October 8. Her parents had failed to get her sister a blood transfusion for about nine months.
Sonam’s grandfather, Ram Kumar, who hails from the town of Hazrat Jandaha in the Vaishali district of Bihar – about 51 kilometers from Patna’s state headquarters – says, “Sonam’s parents are depressed due to the loss of their daughter. They do not talk to anyone since the death of my granddaughter, also a thalassemia major patient.”
With tears in his eyes, Ram Kumar says that the girl’s father, Prem Kumar, works as a clerk at an automobile agency in Jandaha. “He hardly eats since October 8. He is upset as he thinks he is responsible for the death of his child. The fact is that we could not get transfused for over eight months and she passed away when she was brought to the hospital for the transfusion,” he says.
Sonam Kumari with her grandfather
“Thalassemia is a curse we are dealing with. The elder daughter has also been suffering from the same disease since her birth. She was fortunate enough to survive another blood transfusion and now, since the COVID-19 lockdown has been relaxed, we are hopeful of getting her regular blood transfusion,” says her grandfather.
Thalassemias and structural haemoglobin variants are the most common monogenic disorders globally. India has an estimated 1,00,000 patients with a β thalassemia syndrome and around 1,50,000 patients with sickle cell disease. The average prevalence of β thalassemia carriers is three to four percent, which translates to 35 to 45 million carriers in our diverse population of 1.21 billion people. Several ethnic groups have a much higher prevalence (4–17%).
Alleged Shortage of Blood Banks in Bihar
Rupesh Kumar, a resident of Bettiah, is the father of an eleven-year-old boy suffering from thalassemia major. He says he had been getting treatment, blood transfusions and medicines for his son from a hospital in Delhi, but has been unable to travel due to the COVID-19 lockdown.
Kumar, who runs a small eatery in his hometown, says that he is in debt and has taken a loan from his relatives for the treatment of his son.
“When I’d gone to the PMCH blood bank today (October 18), I was told that there was no blood and I could get one unit of packed red blood cells (PRBC) only after the intervention of a social activist. The officials at the blood bank told us that people are not donating blood due to the pandemic. If the blood is bought without a donation then the cost per blood transfusion goes up to Rs 8,000. We are poor people, we cannot afford it each time and are dependent on state-run medical facilities,” says the father.
“Since March I have had to get an entire blood transfusion for my child about about 17 times as we could not get packed PRBC. An entire transfusion is very dangerous for the suffering from this disease because doctors say the kids could end up with a liver infection, thereby increasing white blood cells, which could turn fatal,” Rupesh Kumar adds.
“Bettiah is getting the world’s best hospital as per claims by politicians, but we have to come here to get blood. There is no such facility in my hometown and it takes us about seven hours to reach Patna,” he added.
A senior doctor at the hematology department of a multi-speciality hospital said that nothing is being done by the government to ease the suffering of kids suffering from the disease. “It wouldn’t be wrong to say that there is a shortage of blood in the country, and due to a lack of awareness, timely diagnosis of parents and proper education, Thalassemia cases are growing. About 25% of the cases being reported in the country are from Bihar and Uttar Pradesh,” he said.
“Now imagine the state of affairs where the medical infrastructure has collapsed and is literally on the ventilator. The rising number of Thalassaemia cases also pose a threat to public healthcare in the country,” he says.
Over a lakh children die before they turn 20 owing to lack of access to treatment, while more than 10,000 students are born with Thalassemia major, according to a report from 2018.
Anuj Kumar, a TET teacher from West Champaran district in Bihar, has been stationed in the capital city of Patna only for access to blood transfusions for three children in his family.
“My daughter and my elder brother’s twin kids are Thalassemia patients, and it is the first time that I have come here to Patna for treatment because I could not go to Delhi as the situation is bad due to COVID-19. The problem at the day-care facility here is that doctors do not accept blood which is brought after one pm, but the time of closure for the facility is four pm. The other problem is the unavailability of blood at the blood bank. Officials here say that you will not get blood if you do not have a donor,” says Anuj.
“All three kids went for entire transfusions about 37 times in the past one year as the PRBC blood is not available at Bettiah Cantt and district hospital. It has increased the risk for our children and the treatment is so expensive that we cannot afford the bone marrow transplant. I am now in debt of Rs seven lakhs and I do not know how long till I can continue treatment for them,” he adds.
“I spoke to the CMO on many occasions and he says that we will be able to get PRBC blood when the medical college opens in Bettiah. That is the answer we get,” Anuj Kumar says, tears in his eyes.
None of the authorities seemingly cared about Thalassemia patients during the lockdown and there were no means available for them to travel for a blood transfusion. According to Mukesh Hisariya, who runs an NGO to support such patients in arranging for blood, people were forced to borrow vehicles from others, with some even walking kilometers on end to reach the PMCH and get blood.
According to Hisariya, the availability of medicine which is required to normalise iron levels in the body is a big issue for families.
When this reporter visited the day-care centre at the PMCH, the medicine was not available. A notice board right at the entrance to the facility said so. Though the staff at the centre claimed that the unavailability was temporary, patients and their families say it is a regular occurrence.
PMCH is not the only transfusion facility that faces unavailability of the medicine. According to Hisariya, the issue is prevalent throughout the state. “There is no shortage of the medicine but its availability is affected because of the system. Officers keep passing the buck to the others and in the end, the children suffer,” he added.
The funds provided to the state under the National Health Mission often remain unused and are returned. There is a strong need to utilise those fund for thalassemia patients, Hisariya said.
Requests made to the state’s health department did not elicit a response.