Shanti Tamang Lama knows firsthand what it’s like to go without HIV meds.
When the Nepal earthquake struck in April of 2015, the country was so shaken that rescuers had a hard time reaching rural communities. An Indian blockade later that year furthered Nepal’s humanitarian crisis, making it difficult to get medicines, among many other supplies, into the country.
And amid it all, Tamang’s doctor was no longer able to get her the medication she needed to manage the disease.
When staff at Direct Relief learned of the situation, the organization provided a supply of antiretroviral drugs for a number of Nepali people living with HIV, including Tamang.
Tamang’s own crisis was averted, but she didn’t want other Nepalis – particularly women and children – to struggle the way she had with HIV or other health issues.
“Now I had to [take action] myself so other women wouldn’t have to suffer,” said the activist and health educator, translating through her 17-year-old daughter, Kranti.
She started by bringing antiretroviral drugs to communities damaged or isolated by the earthquake.
But when she spoke to the women in these communities, it was clear that more was needed: More education and awareness. More screening. More support.
Today, both the Tamang women run the Shanti Foundation, an organization that provides screening, education, and counseling for HIV, cervical cancer (HIV-positive women are five times more vulnerable to it), and uterine prolapse. When they find these conditions, they coordinate the necessary treatment.
Teaching and Testing
Tamang was 13 years old when she was kidnapped, smuggled from Nepal to India, and forced to work in a brothel. After a police raid made it possible for her to escape, she returned to Nepal, only to find that she’d contracted HIV.
The disease left her so unwell that, for a time, she had to leave her young daughter in an orphanage. The pair were reunited when Kranti was 12. Adolescent Kranti helped with writing and communications for the fledgling organization. “I had to do it for my mom,” she recalled fondly.
While their primary focus is on helping women, the Shanti Foundation reaches a wide variety: urban sex workers, brick factory employees, and women and children in remote communities where health services and education are hard to come by, among others.
The organization operates by providing health camps, where they explain how HIV works and what treatment options are available. They provide testing for the disease, along with cervical cancer screenings and examinations for uterine prolapse.
Sometimes, for people living in especially unsanitary conditions, the Shanti Foundation’s workers will educate camp participants on the basics of hygiene, passing out soap and toothpaste and showing how to use them effectively.
And when an HIV test or cancer screening is positive, they’ll bring the person to Kathmandu and work with other NGOs to arrange surgeries, chemotherapy, and antiretroviral therapy. Shanti explained it’s difficult to access any of these in rural areas.
“Women are dying because of not being able to [receive] treatment,” she said.
Living Amid Stigma
HIV is a highly stigmatized disease in Nepal. According to Krishna Poudel, a professor at the University of Massachusetts-Amherst and an expert on HIV education and prevention in the country, the situation has improved since the early 2000s, but 40% of Nepali women and 33% of men still have discriminatory attitudes toward people living with HIV.
Some don’t believe that HIV-positive children should go to school with other children. Others wouldn’t buy fresh vegetables from an HIV-positive shopkeeper.
In particular, “discriminatory attitudes towards people living with HIV are more common among rural women and men (50% and 37%, respectively),” Poudel explained via email.
Tamang’s experience is similar. She said that many people in the communities she works with know little about HIV. Some people living with the disease are isolated from neighbors and even family members, who are worried they’ll be infected through touch. Many aren’t aware that antiretroviral therapy exists.
For those living with the disease, the consequences can be devastating. Tamang described patients who have been beaten by family members, shunned by their villages, or evicted by landlords because of their HIV status.
A New Vision
Poudel had good news about HIV in Nepal: It’s in decline, from a peak population of about 50,000 people to 30,000 today. In large part, he said, that’s due to education and prevention efforts from both the Nepali government and NGOs.
But Tamang feels her work is far from over. In addition to preventing the spread of the disease, she wants life to be better for those living with it. That means increasing access to treatment and working to end the stigma and discrimination around it.
Direct Relief has been working with Shanti Foundation since it was founded in 2017, supporting the organization through a series of grants that enable the health camps and outreach that are essential to its work.
“Direct Relief has been our strength,” Tamang said.
Until now, the Shanti Foundation has worked primarily by going from village to village and factory to factory to reach vulnerable women and children.
But Tamang wants to do more. She’s hoping to build an emergency shelter for HIV-positive women and children, survivors of sex trafficking and violence, and poor women with cervical cancer or uterine prolapse.
The shelter would provide a safe place for women and children to stay, access to high-quality medical services, help with medications, counseling and a nutritious diet.
Tamang’s own history makes her work – whether it’s explaining how HIV is transmitted or arranging treatment after a test comes back positive – feel uniquely personal.
“I had to convert my sorrow into my strength, and I had to support these women,” she said.