Death by neglect

- September 27, 2018
| By : S Chander |

The deaths of 20 kids due to diphtheria has exposed the holes in the universal immunisation programme. Stronger action needs to be taken to fix this health disaster “Initially, he was having difficulty in breathing and soreness of throat,” says Abid, father of Wasim, a six-year-old who lost his life to diphtheria at the Maharishi […]

The deaths of 20 kids due to diphtheria has exposed the holes in the universal immunisation programme. Stronger action needs to be taken to fix this health disaster

“Initially, he was having difficulty in breathing and soreness of throat,” says Abid, father of Wasim, a six-year-old who lost his life to diphtheria at the Maharishi Valmiki Hospital in north Delhi. “By the time we realised it is something serious and got him admitted to hospital, his neck was swollen and food started coming out from his nose. He was in extreme agony,” he adds.

“I blame myself for his death because I should have got him vaccinated. None of this would have happened then. We are not educated so there are things which we do not understand easily,” he says, sitting next to his wife, who is inconsolable.

Theirs was not an isolated tragedy — 19 children have died at the Maharishi Valmiki Hospital (and one death has been reported from the LNJP Hospital) due to a disease that has globally shown a declining trend with effective vaccination programmes. In a country where last year the government announced that universal immunisation (Mission Indradhanush) will be achieved by 2018 (advancing its earlier aim of doing this by 2020), the recent outbreak of diphtheria uncovers the reality.

In fact, India is holding onto its position of being the ‘world leader’ in diphtheria cases, haunting the most vulnerable in the population — every year, the highest number of diphtheria cases are recorded here. The WHO immunisation report says, “The South-East Asia region, particularly India, is the major driver of global diphtheria incidence trends and most diphtheria cases occur in unvaccinated individuals.”

According to WHO estimates, in 2017, India had 5,293 cases of diphtheria — a figure that surpassed that of countries like Pakistan (560), Nepal (728) and Bangladesh (5). Shockingly, in 2016, India had lesser number of cases — 3,380 cases and 177 deaths were reported. In 2015 , 3,249 cases and 85 deaths were reported. This suggests that there has been an increase in diphtheria cases in India.

But it is not just diphtheria, every year in India, 5 lakh children die due to diseases that can be prevented by vaccines, according to the National Health Portal of India.

Vaccination in vain?
Holding a photo of her five-year-old son, Rammo bursts into tears. She still can’t believe that she will never get to see him again. Her swollen eyes and frail body are a testimony to her ordeal. “We thought it is nothing more than a common cold or some infection because of the rainy season. But now we have lost him forever,” she laments.

Rammo’s son was admitted to Maharishi Valmiki Hospital too late, after his condition became critical. “Teeke toh sab lagwa diye the (We got him vaccinated),” says his father Abdul, as he too gets teary-eyed. They claim that their child had been vaccinated but since they do not know the names of the vaccines, they are not sure whether the pentavalent vaccine (that protect against diphtheria and four other diseases) was administered to their son.

There were other cases where parents claimed that their children had been vaccinated but the hospital administration is clear that most of those who died were not vaccinated. The blame, in fact, can be laid at another door. “If the parents are saying that their child was vaccinated, but still suffered from the disease, then it might also be possible that there was poor cold chain maintenance, which compromised its efficacy. It could also be that the vaccines were expired — one cannot entirely eliminate that possibility,” says Dr S Khan, a pediatrician in a government hospital.

The pentavalent vaccine (PV) was introduced in 2011 to replace the DPT vaccine (that was administered for protection against diphtheria, tetanus and pertussis — whooping cough). The new vaccine targets five infections — diphtheria, pertussis, tetanus hepatitis-B and HiB. Dr Varinder Singh, a pediatrician at Lady Hardinge Medical College says, “I do not think it will be fair to say that this new PV vaccine is responsible for the deaths. In many areas of UP, PV is still not being given and the programme started just a few years back, so it is not even necessary that these children got the new vaccine.”

Incomplete dosage
On being asked how these children can suffer from the disease if their parents claim that they have been immunised, he says, “This happened because they were not fully immunised and the booster shots were not given. Even when all the doses are administered, the chances of not suffering from the disease are 80%, which gets reduced to 60-70% if the immunisation has been partial. Everything has its limitations but full immunisation is the strongest protector against this disease.”

Dr Abhishek Srivastava seconds this view. He says, “Babies and young children need all the doses of the vaccine to build a high level of protection. There is a probability that these children were not given the entire dosage, which left them vulnerable. The dosage needs to be complete to ensure full protection but maybe they were not even aware of this.”

“Primary immunisation needs to be followed with the booster doses, otherwise the immunity will wane,” says Dr KP Sanghvi, neonatologist (Jaslok Hospital). In India, primary immunisation rates are still better than the rate of booster immunisation.

Mistrust and misinformation
Eight-year-old Pashmina from Dadri, who lost her life to diphtheria, was not vaccinated against it. On the other hand, her neighbour — five-year-old Aditya — was immunised. But if a vaccination programme was conducted in the area, how did it miss the house next door? Would things have been different had she been vaccinated?

The neighbours say that her parents did not get her vaccinated because most of the Muslims in that area are suspicious about vaccination. In Dadri, many parents claim that they have got their children vaccinated. But there are also those who accept that they do not follow regular immunisation.

Most people in the latter category are from the Muslim community, who continue to remain reluctant about getting their children vaccinated. But what is it about an injection that makes them so fearful? A deep-rooted misconception.

“Muslims think that we have mixed something in it to control their population. Even though we try to make them understand that it is a very serious disease that can also easily spread, they give some religious reason to evade us. We try to make sure that every family is covered but it becomes difficult if there is no cooperation from the people who it is going to benefit. Even during polio programmes, convincing them has been the toughest,” says Reshma Kumari, an Anganwadi worker, highlighting this ground reality.

Shankar, a 27-year-old from Dadri, says, “Mostly all of us get our children vaccinated, but Muslims are very hesitant about it. Many among them continue to believe the rumour that vaccines can make their children infertile. Even though the doctors who come here try to convince them, their resistance is so strong that the efforts are futile.” An auxiliary nurse midwife (ANM), Poonam Sharma, validates this and says that people also hide their children in their homes.

Shankar adds, “Maybe this issue was highlighted because of the sudden increase in the number of deaths due to diphtheria in Delhi, but Dadri has been gripped by not just diphtheria but also whooping cough for a long time now. There was a time when one child from almost every family suffered from it. Even my daughter suffered from whooping cough, even though we got her vaccinated.”

Last week, two other children from Dadri also died due to diphtheria, after which a medical team reached there to take stock of the situation. During their examination, they came across seven children with symptoms of diphtheria who were sent to Badalpur Hospital for medical tests to ascertain their condition.

The initial survey conducted by the medical team revealed that children from 36 families had not been vaccinated. Counseling has been scheduled for such families to ensure that they get their children vaccinated. Villages around west UP are witnessing an alarming situation as many children have been diagnosed with diphtheria or have symptoms of it. Most of the cases that have surfaced and the children who have died are from Muslim families.

Dr Qasim Rasool Ilyas, member of the All India Muslim Personal Law Board, says that many Muslims who are not aware or educated, believe that vaccines will make them infertile. “This is a rumour which has gained such strong ground within the community that people are scared to get their children vaccinated. But leaders and elders of the community should come forward to clear their misconception.” Terming this a result of ignorance, he adds, “There is no religious connection. How can God tell you not to take a medicine or injection?”

There is definitely a trust deficit. “People from the Muslim community mistrust the vaccination system,” says Dr Abhishek Srivastava. “Many still think that these vaccines can make their children infertile. When we are out in the field to administer vaccines, we also come across people who avoid these vaccines because lack of awareness makes them scared of the after affects as sometimes after vaccination, children might experience mild fever, vomiting or weakness.” WHO estimates also suggest that diphtheria cases have a higher occurrence among Muslims. Last year, children in a Muslim majority district of Kerala — Malappuram — had to face the repercussions of the anti-vaccine mindset (there was also a shortage of the antitoxin here).
On the other hand, Dr KP Sanghvi, says, “All my Muslim patients get vaccinated. I think more than being about a community, it is about the spread of misinformation, facilitated by illiteracy. That misinformation can be prevalent in any community. Once I had a case of a family that believed in homeopathy to the extent that they did not get their child vaccinated and the child ended up being afflicted with measles. So, I feel that alternative medicine is also spreading misinformation.”

Dr Singh also says, “More than being about a religious community, it is about its backwardness in certain areas. They are not aware. Many often get confused, they don’t even know how many vaccines are to be given and the dosage, which is why they end up having incomplete dosage.”

Supply snags

“What is the use of all this medical advancement if children are dying because a medicine could not be provided in time?” Abdul, whose son died at the Maharishi Valmiki Hospital, questions furiously. He blames the hospital and authorities for the unavailability of antitoxin, which could have saved his son’s life.

Several patients at the hospital cited the unavailability of the diphtheria antitoxin (used to treat diphtheria) as the cause of death. Nadeem’s six-year-old daughter, Rukhsar, was given the serum after he managed to procure it from a private shop. “I had to go from one place to another, looking for the anti-toxin that the doctors asked me to get, since they did not have it then,” he says.

Last year too, around 550 children suffering from diphtheria were admitted to the Maharishi hospital. Medical Superintendent of the hospital, Sunil Kumar Gupta, who has now been suspended, had said that the hospital did not have this serum since November last year. He claimed that he was in touch with the administration of the Central Research Institute (CRI) in Kasauli, which specialises in manufacturing anti-diphtheria serum (same as the anti-toxin), but the serum could not be provided because their lab was closed for some upgradation. Contrary to these claims, the director of CRI said that 50 vials of the antitoxin were kept ready for 15 days but no one came to collect it.

According to the hospital authorities, most of the patients came to the hospital after the condition of their child deteriorated, making the chances of survival low even after giving the serum. Dr Singh too says, “The disease is treatable if detected early, otherwise the antibiotics do not work. At advanced stages, very little reversal can be done.”

In response to the situation, the Union Health ministry said that the serum has been provided to the hospital and UP government has been asked to take preventive measures. North Delhi Mayor Adesh Gupta has asked for a probe into the alleged “callousness of the hospital authorities”.