Indian Red Cross Society volunteers help in the fight against a pernicious disease and the deadly stigma it brings.
IN an urban slum in Amritsar, in the north-western state of Punjab, 24-year-old Ram lives in a single room with his parents, sister and her two children. The windowless, brick-faced chamber contains three adjoining beds and a pedestal fan in the corner, small comfort from the sweltering 48° Celsius heat.
“I got TB [tuberculosis] because I was an injecting drug user,” says Ram, who was later also diagnosed with HIV. “In addition, I was smoking cigarettes and consuming bhang [a drug made out of cannabis]. I was using [the drugs] for a very long time… It has now been six to seven months since I stopped.” Ram’s father also suffered from TB a few years ago. But while his father completed his treatment and was cured, Ram didn’t finish his first round of treatment.
“I felt the medication was harming me… making me weaker day by day,” he explains. But then he became even frailer and the family eventually took him to a state-run TB hospital. After further tests, Ram learned he was HIV positive and so the doctors started him on a new regime of pills, coupled with injections to help fight both HIV and TB.
People suffering from TB stop their treatment for many reasons. Sometimes it’s because they begin to feel better and they think it is no longer needed. For others, it is due to the side effects or the difficulty of maintaining the routine in the midst of other problems — unemployment, addiction, lack of food.
Stopping treatment is extremely risky, however. If the TB bacteria survives through partial treatment, it can develop resistance to TB drugs. This strain (known as multidrug-resistant TB or MDR-TB) takes two years to cure and the treatment is 100 times more expensive.
This is where people like Gurpreet come in. A man in his 30s with a cropped beard and moustache, Gurpreet is one of the many Indian Red Cross volunteers supporting the country’s national TB programme and one of the ten who work in Amritsar. “I normally visit patients at least once a week. However, in Ram’s case, there are times when I see him up to two or three times a week,” says Gurpreet, who helped Ram find alternative treatments when, due to his frail state, he had difficulty injecting himself with the drugs.
“I had to get injections but I could not take them — I have nothing left on me,” Ram says. “Then I was given pills to eat with instructions on when to take them. I was also given nourishing food to eat. I was taught [by Gurpreet] how to take measures so as not to pass on the disease. I mostly have my mask on but if no one is around me then I take it off.”
While Ram is frail, he is determined to fight the disease. “Ram is sincere,” says Gurpreet. “He takes his medicines and wants to get better. That in itself gives satisfaction and motivation to devote my time to the cause.”
A house call with Gurpreet
“I never know how long a house visit is going to take,” says Gurpreet. “It is only after I have had a chance to find out how they are doing, do I get down to the routine work of checking their cards and medicine strips. We are like friends. If they have a problem, they talk to me.”
Gurpreet is from Amritsar and being a part of the community helps — people trust him. Volunteers like Gurpreet provide the ‘connect’ between vulnerable people and the formal health system, says Naresh Chawla, district TB officer for the Punjab Health Department in Amritsar.
“If you visit a patient in his house and address him by his name, he feels reassured,” says Chawla. “These small things help. This is where the Red Cross has an advantage. The patient feels that he is being taken care of, a sense of assurance that he will be okay.”
Trust is critical, says Gurpreet. “Some patients do not want anyone to know that they are undergoing treatment due to the stigma attached to the disease,” he says. “When I make a house call and the patient is not at home, I cannot ask the neighbours if they know where my patient is, or if he or she will be back home soon. It will raise questions that I cannot answer without breaching confidentiality.”
Adherence to treatment is 93 per cent among the cases the Indian Red Cross handles — proof that the Red Cross’s actions, such as house calls and arranging transport to access treatment and testing when necessary, yield positive results.
“Another challenge is that, at times, the patients try and pretend that they are regular with their treatment when in fact they are skipping [it],” says Gurpreet. “This is mainly because of the side effects. In these cases, we need to motivate the patient and explain the risks they face. Their motivation can be short-lived so we need to talk to them to ensure that they do not default.”
“No one in the neighbourhood knows that I have TB,” says 23-year-old Mahi, a petite, reserved girl. “We have kept it very quiet.”
Mahi’s immediate family carefully guards her TB status because if word were to get out, it would ruin her marriage prospects. “Since we found out that she has TB, it has increased my burden,” says her father. “She is a daughter. She has to get married.”
In a society where marriage can be crucial to individual and family survival, the stigma attached to TB exacts a devastating social cost — each year more than 100,000 women are rejected by their families. The TB status of a girl of marriageable age can have a major impact on her marriage prospects. And for a married woman, it can mean that she is turned out of her home or is treated harshly by her in-laws.
For this reason, we meet Mahi at a tiny dispensary in the district of Jalandhar, Punjab, as her family does not want any home visits. She and her father come here every week to pick up the drugs. “The doctor is discreet, the other patients do not know what illness we are collecting the medication for… It is a question of my daughter’s future,” says Mahi’s father.
Stigma is not an easy enemy to overcome. Alongside media campaigns by government and other health organizations, Indian Red Cross volunteers organize events, such as magic shows, street theatre and community meetings in urban and sub-urban areas to raise awareness.
These efforts have a measurable impact, says Naresh Chawla. Owing to this awareness-raising, attitudes have changed in the past ten years. “But in the case of young, unmarried females, it is still a problem. Families don’t want to get treatment at their doorsteps,” he says. They don’t want the boxes of medication, inscribed with their names, to be taken to the DOT (directly observed treatment) centres, which monitor the patients and certify that they take their medication. “They don’t want any DOT provider or doctor to go to their homes because it spoils their marriage prospects,” says Chawla.
Poverty, violence and confidentiality
“We can hardly make ends meet,” says Varsha, breaking down as she tells her story. “My daughter is 18 years old. She is working and brings home some money so we eat and pay rent.”
No other family member earns any money. Varsha’s 21-year-old son was born with one kidney and one lung. He gets tired easily and cannot work.
Her husband, a rickshaw puller, died of TB. But he refused to wear a mask or protect his family in other ways, so he transmitted the disease to Varsha and their daughter. “If I said anything, he would drink and fight with me. He suffered for a year or two and then he died,” says Varsha. Her daughter did receive treatment and was cured, but Varsha says poverty makes recovery from TB much harder.
“The medicines I am taking are very strong. You need a good diet with these medicines. There is no one [in my family] earning a proper living, so how am I to eat a nourishing meal?”
She also had to work hard to protect herself and her family from stigma, one reason the confidentiality and professionalism of Red Cross volunteers was paramount. It helps that the Red Cross volunteer pool includes former TB patients who are particularly compassionate when it comes to dispelling myths and reducing stigma among family and neighbours.
“No one in the neighbourhood knew that my daughter [or I] had TB,” she says. “If any one asked the volunteers who they were, they would say they had come from the electricity board. Red Cross volunteers maintained confidentiality.”
By Aradhna Duggal
Aradhna Duggal is an editor and writer based in Geneva, Switzerland.
Indian Red Cross Society volunteer Gurpreet walks into the urban slums of Amritsar, a city in the state of Punjab, where he visits TB patients such as Ram, who suffers from both TB and HIV, which he contracted through intravenous drug use.
Photo: ©Stephen Ryan/IFRC
of the problem is
colossal. Almost 40
per cent of all Indians
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— that is, if their
immunity goes down
or they have some
other infection, this
will flare up.”
Indian Red Cross Society.
For many young women, such as 23-year-old Mahi, the stigma associated with TB can ruin any prospects for marriage, even after the person has been fully cured.
Photo: ©Stephen Ryan/IFRC
Fighting TB and
The fight against TB is not new to the Indian Red Cross Society. In fact, the National Society has been engaged in anti-TB initiatives since 1930, when a fund, created “to commemorate the recovery of His Majesty the King Emperor from serious illness”, was handed over to the Indian Red Cross Society to support educational campaigns against TB, according to Norah Hills, then the society’s organising secretary. The first campaign was run through a local committee and a film on TB, emphasizing early treatment, was also produced. The disease was widespread in India as a result of overcrowding and unsanitary housing conditions. There was also a very serious lack of sanatorium accommodation — in 1930, the total number of beds for a population of 350 million people was less than 1,000.
“In Punjab there
are three main
For us, TB is a very
major threat. But
for a person who has
no food today, TB is
not a threat. His only
concern is where to
get food. Unless and
until we give that
person food security,
taking medicine will
never be a priority.”
This is why confidentiality and discretion of volunteers and health workers are critical. Often, patients come to dispensaries such as this one rather than risk inviting health workers to their homes.
Photo: ©Stephen Ryan/IFRC