Thirty five-year-old Esther Shimray found out she was HIV positive when her husband died 15 years ago. Shimray lives in a colony in the hilly Ukhrul district of Manipur where she carefully poured lemon tea for the women gathered in her house one day in November. Her eight-month-old son was perched on her back in a baby sling. “He is not HIV positive,” she said.
Anot Kaping, one of the women at Shimray’s house, pointed out that Shimray did not like to focus on the past. “She had been on antiretroviral treatment since 2008 and has remarried,” said Kaping, who also has HIV and works as a peer counsellor to help HIV positive women like Shimray.
In Ukhrul, a remote hilly district in the eastern part of Manipur that shares a border with Myanmar, more than 85% of the population lives in remote villages with barely any road connectivity. Most residents belong to the Tangkhul Naga tribe and are members of the Baptist Church. Manipur is one of six states in India with high HIV prevalence and Ukhrul has been one of the worst affected districts. The large HIV burden has mostly been due to the high rates of injection drug use among residents. But since the 1990s, Ukhrul has seen some improvement due to concentrated efforts by the government AIDS control programme, efforts by non-government organisation and community workers as well as a change in attitude in the local church that has helped counter the stigma against the disease.
The district was one of the first to get an antiretroviral therapy center, which is at the district hospital in Ukhrul town, but many villages are still too far and remain inaccessible for public health programmes like HIV control.
Facing stigma
Also present at Shimray’s house that day was 34-year-old Themreiwon Raiting, a community worker in Ukhrul. Kaping and Raiting work with the Citizen’s Alliance for Re-empowerment or CARE, which runs a centre to help drug users and HIV positive people in Ukhrul. Every day, Raiting visits young women who have tested positive for HIV and counsels them to take up antiretroviral therapy. Speaking in Tangkhul, she recalled how she and her husband first found out that they were HIV positive. They had taken their sick daughter to a hospital and the doctor asked the couple to get tested. They found that they had both had HIV.
“It was one moment when I didn’t want to be myself,” she said. “It was in 2006 and HIV was something new for us. We didn’t know anyone who had HIV.”
Anxious about the daunting prospect of living with HIV they went to different test centres, getting tested multiple times, but the results were the same.
Raiting thinks her husband was infected when he was young and in Dimapur where he had experimented with drugs along with his friends who were injection drug users. He died in 2012 and since then she has singlehandedly taken care of their three children. Her family was supportive but her biggest struggle has been acceptance by the larger community in her village.
She remembers when a village elder, during an HIV awareness camp organised for church leaders, talked about references in the Old Testament to people with leprosy being ostracised from the community because they were sinners. He said that HIV is a modern version of a sickness caused by sin and that it was ok if the church excommunicated HIV positive people. He insisted that they could not be given positions of leadership in society. Raiting was an active member of the church and women’s secretary of the village society at the time. She had recently learnt that she was HIV positive.“His words pierced my heart,” she Raiting. “Listening to him, I felt ashamed.”
She also recalled how an advocate conducting an education seminar said that the HIV virus made people promiscuous. “He kept repeating that women with HIV become frustrated because of a surge in sexual drive,” she said. “I couldn’t take it and I began crying. I was recently widowed, and everyone in the village knew that I am HIV positive. They wondered how I was living without a husband and if I had other sexual partners.”
She said that stigma does not trouble her as much now since she has moved from her village to Ukhrul town and has many friends. On the other hand, she recognised that living with HIV has changed her view of the infected. “If I had not contracted HIV I would have been a terrible person. I too spoke ill of people. This has sort of become a boundary for me, something that hems me in from all sides and closing me in so that my life, my lifestyle and my behaviour is enclosed within it.”
Increasing awareness
Kaping and Raiting have heard talk in church and in their villages about how people who have contracted HIV through sex and needles are sinners, while those who are born with HIV are innocents paying for the sins of their parents. But they refuse to differentiate between the two.
“It is important to establish a sense of normalcy and then go forward. With ART life can be very normal,” said Kaping.
The CARE Support Center, where Raiting and Kaping work, provides services like enabling early diagnosis, helping people find care soon after their diagnosis, helping them find treatment, counselling and peer support. The centre also helps people living with HIV sustain and manage their treatment, linking them to government social welfare and protection schemes.
The centre also works with high risk groups like injecting drug users and sex workers to help stop the spread of HIV infection by targeted interventions like promoting condom use, spreading awareness on needle sharing, opioid substitution therapy, peer education, and linking to healthcare services. Yet, about 50% people of high risk groups in the district are not covered by these targeted interventions, said C Liesan, chief functionary at the alliance, adding that a large number of drug users remain in remote areas that have no AIDS awareness programmes.
However, the church in Ukhrul has also played a big role in raising awareness about HIV. Given the strong influence of the church amongst the Tangkhuls, grassroots organisations like CARE have focussed their HIV awareness programmes on communicating with deacons, youth leaders and village headmen. Leisan remembers how initially, these influential figures were unwilling to work with HIV patients, even though some were open to working with drug addicts. “We managed to get them to run a pilot de-addiction programme,” he said. “Gradually church leaders understood the challenges of withdrawal and how continued support was essential for recovering addicts to avoid a relapse. This brought up the question of supporting young people with HIV.”
Aya Thodrqiya, an activist with CARE, remembers how the church’s initial approach to HIV patients was to advise them to fast and pray. Raiting herself tried to fast so that she could be healed.
“Gradually we have been able to make people aware of how withdrawal affects people psychologically and physically,” said Thodrqiya.
Raiting learnt with her own disease. When she saw that fasting did not bring her HIV viral load down and she needed antiretroviral therapy, she started to think about how she could use her experience to reach out to other women with HIV.
The Baptist Church at Ukhrul now sends young ministers for training in psychological counselling. The church leadership also helps community workers to convince young people to start taking ART therapy.
“Many young people are depressed because they don’t have hope,” said Yangni, who is the church secretary. “The church is a good platform to counsel them spiritually and psychologically to help with their recovery.”
This empathetic attitude is a big change from a time in the 1990s when at the behest of the village headman, drug addicts were identified and put under lock and key, recalled Thodrqiya. Activists also had to deal with local groups that despised organisations working with patients of “morei kazat” or the sinner’s illness. In fact, the alliance’s centre at Ukhrul town, set up to undertake targeted interventions towards rehabilitating persons living with HIV, was vandalised in 2014 with the furniture and files being set on fire.
The Baptist Church has also initiated a soft loan scheme to encourage entrepreneurs living with HIV. “They come with a business plan and based on the viability we offer them this loan,” Yangni explained.
Steps towards rehabilitation
Dr Nandeibam Yohen, a gynaecologist at the district hospital, said that large-scale awareness programmes have helped HIV patients live better lives. “I was in Vellore for nine years, and the HIV patients looked extremely weak, even the colour of their skin would change,” he said. “That is not the case here. One reason is that the stigma is lesser. When I am driving from Imphal to Ukhrul, for instance, villagers often stop me on the way to ask for a lift to the ART center, this was not the case in Tamil Nadu. Most of my patients here openly declare that they are on ART.”
Dr AS Felix Khating, a public health specialist at an antiretroviral therapy centre at Ukhrul, still felt the need for a holistic approach to HIV treatment that also facilitates a patient’s social rehabilitation. “Families need to be involved with rehabilitation because there are many personal factors involved,” he said. “For instance, impotency caused because of addiction is a common reason why families break up. Many recovering addicts also have reduced memory and take their medicines too often which causes toxicity.”
Helping HIV positive people deal with their illness and lead better lives is what Raiting and Kaping do every day. “I believe this is my calling,” said Raiting. “I work beyond the target that has been assigned and that brings me a lot of satisfaction.”
Raiting’s own 15-year-old daughter is HIV positive. The girl saw her father die of AIDS. She wonders if her life would have been better if her father was around. She also wonders how long she will live.
“I send my daughter to church for counselling and let her talk it out,” said Raiting. “As she is growing, she is getting better.”
As they left Esther’s apartment, Raiting and Kaping talked about how HIV should be treated as just another physical illness without any stigma. “That time will come soon and that is what gives us hope,” said Raiting.