Feature story

Communities strengthening the AIDS response in Nepal

21 May 2020

From the very beginning, communities were in the vanguard of the AIDS response in Nepal. Still playing a vital role in the response to HIV in the country, communities are making good-quality services more accessible for people living with HIV and key populations and standing up to HIV-related stigma and discrimination.

“Nepal made antiretroviral medicines accessible to all people living with HIV as a result of advocacy efforts led by communities, human rights activists and other national stakeholders,” said Gopal Shrestha, a prominent community leader living with HIV.

Discrimination towards key populations is still deeply rooted in Nepalese society. “Finding people who need services is difficult due to a lack of trust. We work with those communities that fear coming out because of discrimination,” said Simran Sherchan, Operation Head of the Federation of Sexual and Gender Minorities in Nepal (FSGMN).

Although antiretroviral medicines are available to everyone living with HIV in Nepal, a survey conducted in 2018 reveals that more than 30% of transgender people avoid seeking health care because of fear of stigma and discrimination—something that FSGMN is determined to end.

“Community-based organizations play an intricate role in reaching out to those hard to reach,” said Anjay Kumar KC, a community leader who advocates for harm-reduction in Nepal. Recovering Nepal, a community network of people who use drugs, is supporting harm reduction programmes and HIV prevention among young people who use drugs, including a peer-to-peer programme that provides sterile needles and syringes and a campaign that promotes HIV testing. It has also played a key role in advocating with the government to initiate opioid substitution therapy, which is now offered at 12 sites in five provinces in the country.

Community-based organizations mobilize communities to demand services and advocate for their right to health. Recently, the National Association of People Living with HIV/AIDS (NAP+N) successfully advocated to include people living with HIV in the country’s Health Insurance Programme in 57 districts across the country. “NAP+N also entered into an agreement with Prime Life Insurance Limited to guarantee people living with HIV can access life insurance services,” said Rajesh Didiya, President of NAP+N.

Despite these achievements, community-based organizations face challenges. “When I reach out to sex workers, I have to hide my identity, because sex work is still stigmatized by my family and society. That is why it is difficult to publicly raise awareness about sex workers’ rights,” said Bijaya Dhakal, Coordinator of the Nepal Federation of Female Sex Workers.

Parina Limbu, a community leader who advocates for engagement in decision-making by women who use drugs, said, “Being labelled as women who use drugs, women living with HIV and hepatitis and sex workers, we are not within the reach of programmes. Our needs should not be looked at through the lens of males who use drugs. Women who use drugs need more decision-making spaces to make sure that our voices are heard.”

Those challenges can be overcome through partnerships and joint efforts, however. The Right to Health Women’s Group, Right Here Right Now and FSGMN have created a platform to collect and monitor cases of human rights violations against people living with HIV, key populations and young people. They use the evidence that they collect to advocate for programmes on stigma and discrimination reduction in health facilities and raise awareness about the human rights of key populations with law enforcement officers.

UNAIDS in Nepal has played a key role in empowering communities. “The important role that the community plays in the country’s response to HIV should not be underestimated. The gains made are because communities are taking the initiative and acting in ways that ensure that people who need treatment, prevention and related HIV services can access them,” said Masauso Nzima, UNAIDS Country Director for Nepal and Bhutan.