For 37-year-old Vanlalruati Colney, things were as idyllic as they could be for the first few years of her life. Growing up in Mizoram’s Aizawl, she lived with her father, a government official, and her mother, a home-maker. Her childhood was marked by bedtime stories from the Bible, spending time with her two brothers and cultivating her love for books and reading.
But her parents soon split, owing to religious differences, and Colney found herself shifting between homes constantly. She’d change three schools within a year because of the constant relocating. But despite it all, she says she was a relatively happy kid.
Colney adds that she was raised in a close-knit community. “Respecting our elders was fervently taught to us. It was during this time when drugs had become popular in our area. Our elders would make us buy drugs from pharmacies and the black market. This made me uncomfortable and uneasy at times. However, we were scared and hesitant, but didn’t dare say no to their requests,” she recalls, in conversation with The Better India.
Almost naturally, Colney fell into drug abuse at a young age. At 20, she was diagnosed with HIV, as a result of intravenous drug abuse. “I later had the Shingles (Herpes Zoster). As a result of the blisters and rashes all over my body, I couldn’t even wear clothes. My hair was falling off. I was put in an isolation ward all by myself. The fluid discharge caused by the infection led to my skin sticking to the bedsheets, which had to be washed every day. But the hospital staff was hesitant to touch the sheets, so I’d have to do it myself,” she says.
‘If not me, then who?’
At this time, ART (antiretroviral therapy), which suppresses replication of the virus and restores the immune system, had not been made available in Mizoram. Even healthcare providers were not too well-versed with HIV at the time. Colney’s condition was deteriorating, and everyone, including her family, was convinced she would die. “We were struggling and did not have enough money to even buy medicines,” she recalls.
She took the first phase of her de-addiction at home, and decided to go cold-turkey. Fevers, vomiting, muscle cramps, anxiety, and mood swings — her body protested in many ways. However, she held her resolve. She joined her local church group, where she found support rather than discrimination, and the desire to help fellow HIV patients grew stronger in her. “I volunteered in the field with no experience and qualification, but had one strong motive — I wanted to give them all my help in reducing their hardship and burden. I kept thinking, ‘If not me, then who?’” Meanwhile, the severity of her illness became better over time.
In 2007, Colney established the Positive Women’s Network of Mizoram (PWNM), a support and advocacy group for women living with HIV in the state. The organisation has been registered with the Mizoram Government Society. “The idea was to uplift and empower women living with HIV, educate them for their welfare, and support and assist one another. The state has over 20,000 registered People Living With HIV (PLHIV), so we wanted to ensure their rights, medical support, connection with state schemes and citizenship entitlements,” Colney says.
PWNM runs a Care & Support Centre for PLHIV and Colney says they are India’s first community-based Link ART Centre. Through their advocacy efforts, the organisation has pushed for making mainstream general healthcare accessible for PLHIV. Services provided by PWNM include campaigns and activities to spread information and awareness on HIV and AIDS, enable support groups and peer counselling, provide legal assistance and access to treatment, rehabilitation and healthcare facilities, linkage with government schemes, employment opportunities and vocational training.
A friend in need
So far, the organisation has helped over 10,000 people across the state, including women and children.
A 39-year-old from the network says, “I was diagnosed with HIV in 2015, and found out about PWNM through social media. The organisation has helped me in many ways, especially with delivery of medication in a timely and confidential manner, so my family and community members are not made aware of my status. The medication reaches my doorstep directly. It’s very important to take the medicine regularly — I can’t miss even one day. The organisation has been very diligent and regular with deliveries. During the COVID-19 outbreak, and the lockdown, we couldn’t even step out. PWNM had to seek several permissions, all the while maintaining our confidentiality.”
She adds, “We were also provided with food such as milk, eggs, dal, vegetables and rice. Sometimes, they just lend us a shoulder to cry on, or a listening ear. We suffer from a lot of physical as well as mental ailments, and no matter how minor our problems seem, the organisation provides counselling and support when our morale is very down. They’re available 24×7 and always accessible.”
“It’s hard for members of our community to find employment. The organisation regularly gives us Rs 5,000 a month to support and help sustain ourselves,” she notes.
At the onset of the COVID-19 pandemic, the PWNM team stepped in to care for those who were abandoned. They referred 38 IDU (intravenous drug use) clients who were going through withdrawal to helplines such as MDUF (Mizoram Drug User Forum), which is assisted by qualified doctors, and later to Opioid Substitution Therapy centres. Three PLHIV stuck outside Mizoram during the lockdown were helped with their delivery of ARV drugs. One client from Assam, who was stuck in Aizawl, was helped with the delivery of drugs as well.
PWNM also tied up with the NGO Goonj and UNAIDS to mobilise food and nutritional support for 850 poor PLHIV families and daily wagers, as well as 200 PLHIV women for formula feeding. In tandem with the Government of Mizoram and the Horticulture Department, vegetable seeds were given to 60 clients that had kitchen gardens and farms. In addition, some clients in jails and rehab centres were provided with medicine and other such facilities.
Through perseverance and grit
Challenges increased multifold during the pandemic, when many could not visit ART centres to procure medication. This affected especially those living in villages or the fringes of Aizawl. Helplines were set up for such people, and Colney put out her personal contact details on social media and local TV channels to offer assistance.
“Daily wagers were unable to find work during the lockdown, and a total of 850 families struggling to make ends meet were provided with nutrition, feeding formula and vegetables. We had to wait in line for hours on end because grocery stores were open for only around 2 hours a day,” Colney says and adds, “Also, some ART clients changed their residential addresses, which made it difficult for us to track them. We had to go to far and remote places, which was quite tough at times.
“During this time, we had no PPE kits. Even our own family members feared we’d contract the virus, and were afraid of us. While according to the government SOP, we [HIV infected persons] were included amongst those who were to be more cautious, due to such circumstances, we had to expose ourselves to the outside world while fearing for our lives,” she adds.
Additional challenges that have always existed include the stigma and discrimination surrounding HIV. “We’re stigmatised as a group of indecent delinquents with bad characters, and don’t receive trust and respect, which affects our self esteem.” PWNM also finds itself hindered by lack of funding, and they mostly operate with the help of local donations and self-financing. “As for me, I have to look after my family and play my role as a mother, but I often find myself having to leave my 13-year-old son behind for work,” Colney says.
In 2019, Colney was awarded the Woman Exemplar Award, Health Category by former Union Minister Suresh Prabhu at an event organised by the Confederation of Indian Industry (CII) in New Delhi. “My work and struggles have been more widely recognised than I had envisioned,” she admits, adding that she has now been sober for 18 years.
Speaking of her robust support system, Colney says physical and moral support from her husband, who is also living with HIV, and her local church group kept her going. “I was often hurt by the stigma and discrimination, but persevered. It also instilled in me the desire to motivate and provide hope to my fellow PLHIV,” she says.
To those fighting HIV, Colney says, “There are a few things you must keep in mind. Identify networking partners for assistance in human resources and other such needs. Observe self-care and undertake prevention measures when you’re assisting your community. Know your status and adhere strictly to ART. Remember, early diagnosis and treatment is always more effective. Also, failure is a part of life. If you do not fail, you do not learn, or change. The community must be united — teamwork is our strength.”
Edited by Yoshita Rao