KATHMANDU, NEPAL – The buses circling Kathmandu’s Ring Road pick up and drop off passengers endlessly. Subina Rana, 26, exits a bus, then walks 100 meters to work at Shakti Milan Kendra, SMK, a nongovernmental organization, NGO, established by HIV-positive women to work for rights for women like them.
Posters decorate the building with slogans such as: “Discrimination-Free Society, Our Human Rights,” “Easy Access to Treatment Government’s Duty,” and “Our Basic Needs Our Rights.”
Rana, who requested her name be changed because she has not disclosed her status to many people in her life, says HIV-positive women face increasing discrimination in Nepali society.
“We face discrimination at every step of our life despite chanting slogans for our rights,” she says.
Fair, lean and sweet-voiced, Rana wears a beige jacket and black pants. She smiles as she talks about how she contracted HIV. Her colleagues at SMK say her smiling face deceives those who don’t know the story of her past.
“I am habituated to smiling,” Rana says.
Rana says that when she was 12, a woman she knew lured her to a fair, where she was trafficked and sold to a brothel in Mumbai, India. Police rescued her four months later, but she had already contracted HIV.
The police placed her with an NGO called Asha Sadan, a rescue home for women and children in Mumbai. After six months, she was able to come back to Nepal with the help of ABC Nepal, an NGO that aims to empower trafficked women.
Rana, who was in sixth grade when she was trafficked, is currently in 10th grade in a school in Chabahil, a historical district of Kathmandu, Nepal’s capital. She says that in school she has to hide her HIV status, her real name and her place of origin because of the fear of stigmatization and discrimination.
“If anyone knows of my status, I will be ostracized by my friends and teachers,” Rana says.
Despite being older than most of her classmates, she says she wants to study to materialize her childhood dream of being a successful person.
“I have to cover my past for the sake of my future,” she says.
Rana has three scars healing on her abdomen, which she says are an example of the discrimination she faces for having HIV. She says that she developed three papules – small, solid elevations of skin – last week, so she went to get them checked in one of the reputed medical centers in Chabahil. The health assistant recommended squeezing the pus out of the papules, so she informed him of her HIV status so he could protect himself with gloves. She says he squeezed only one of the papules and sent her away with medicine.
She says the pain became intolerable the next day so she returned to the medical center. But she says the medical assistant working this time refused to treat her after she revealed her HIV status.
“He asked me not to come back there,” she says. “He said that the papules will never heal, and instead of squeezing the pus out, he covered it with a Band-Aid.”
Rana says she no longer feels required to inform physicians about her HIV status, even though she is well-informed that the virus can be transmitted if not treated with caution.
“I was not treated [when] I told the truth,” she says. “Therefore, I do not see anything wrong in lying to get treated.”
Like Rana, many people living with HIV in Nepal say medical discrimination is common and so they have stopped telling doctors of their HIV statuses in order to receive care despite knowing the risk of transmission. Experts say stigma stems from the association of HIV with activities considered taboo in Nepali society, such as drug use and sex, but warn that anyone can be infected. Officials say a lack of government coordination has tied up foreign aid and that treatment centers are sparse in remote areas. Doctors maintain that hospital staff members don’t discriminate against people with HIV and that NGO trainings and government policies have been working to reduce stigma.
The leading causes of HIV infection in Nepal are poverty, illiteracy and lack of awareness, according to the Ministry of Health and Population. The number of people living with HIV in Nepal increased from about 56,000 to 70,000 from 2001 to 2007, according to the latest statistics from the World Health Organization, WHO. But with testing centers sparse in rural districts, advocates say those numbers could be significantly higher.
But Dr. Krishna Kumar Rai, former director of the National Center for AIDS and STD Control, NCASC, an apex body under the Ministry of Health and Population, says that the reported cases to date are only 16,000. Authentic HIV statistics in Nepal are unavailable because of the lack of easy access to HIV detection centers and the fear of social discrimination after being detected, according to a WHO report.
Like Rana, Maya Sharma, 27, also requested her name be changed because of the stigma of HIV here.
“If the landlord gets to know about my status, he will force me to evict the apartment,” she says. “What shall I do then?”
Sharma says she contracted HIV 10 years ago from her husband, who worked in India, where he eventually died of AIDS.
More than 42 percent of HIV infections in Nepal are among migrants, according to the U.N. Development Program.
Sharma works for the National Association of People Living with HIV/AIDS in Nepal, NAPN, an NGO working to ensure the rights of HIV-positive Nepalis. She says her cheek is inflamed because she recently underwent a dental treatment, which has been giving her a lot of pain and has led to swelling that makes it difficult for her to talk.
She says that one day she had an unbearable toothache so she went to Bir Hospital, the oldest and cheapest government hospital in Nepal. She says she didn’t reveal her HIV status, so the dentist screened her and asked her to return the next day to get her cavities filled. She says that when she returned, she informed the dentist about her HIV status so he could take the required precautionary measures.
“He sent me back without treating me that day,” Sharma says.
She says she went back again the next day, but the dentist ignored her and treated other patients instead.
“He said my toothache didn’t require any cure and that it would heal itself,” Sharma says. “Instead, he prescribed some painkillers and sent me home.”
But it didn’t cure itself. She says that when it became intolerable, she went to a private dental clinic. The doctor recommended the tooth be removed. She says that she didn’t mention her HIV status this time.
“The pain was excruciating, and I wasn’t given any treatment when I revealed my status, so I became reckless about the transmission of the virus to other[s],” she says.
Although both Rana and Sharma work for organizations that advocate for the rights of HIV-positive Nepalis, they say they do not feel comfortable enough to discuss their own status. They say that most of the HIV-infected people in Nepal choose not to talk about it with their relatives or in public because they fear they will be discriminated against and not receive medical treatment when required.
Sharma says her recent experience with her tooth proved these fears to be true.
“In the past, I would wondered what would happen if I openly shared my status with the doctor, and when I did, I didn’t receive any treatment,” she says.
Sita Shah, chairwoman of Shrijanshil Mahila Samuha, a local NGO, says that HIV-positive Nepalis have to hide their status because of the weakness of doctors here. She says most people think they are immune to HIV, which creates a false sense of security and makes them less empathetic with people with HIV.
“Therefore, they discriminate and ostracize the infected people,” Shah says.
But Shah says it is the right of every person – even those who are infected with HIV – to live a dignified and normal life.
Dayawati Sedhai, team leader at SMK, agrees.
“HIV-infected people lack treatment in the society and are deprived of their right to live freely,” she says.
Sedhai, a resident of Kavre, a village development committee, VDC, or municipality, southeast of Kathmandu, says she contracted HIV from her husband, who contracted it through drug abuse. He eventually died. She says that when she took him to Sukraraj Tropical and Infectious Disease Hospital, commonly called Teku Hospital here, she was shocked at the doctors’ response.
“They asked me why I brought him to the hospital and suggested I let him die and completely ostracized him,” she says.
She says hospitals also discriminate against HIV-positive people in other ways, too. She says when they do receive admission to a hospital, they often have to clean their own dishes, are restricted from using the bathroom and are asked to buy all the equipment required for the surgery.
“Although the doctors do not say anything to our face, we can see how they discriminate against us,” Sedhai says.
Women working in this sector say that HIV-positive women face double discrimination in society. They say the society already has a negative perspective of women, which worsens for women with HIV.
Stigmatization within the Nepali community stems from HIV’s association with activities viewed as illegal and immoral, such as drug use and sexual relations – two major causes of transmission here.
Rai says that local organizations working on drug use say that the major cause of HIV infection was unsterilized needles among drug users in the past, but that currently most of the detected cases are found among sex workers and their clients who have unprotected sex at massage parlors.
According to NCASC, the percentage of intravenous drug users with HIV declined from 68 percent in 2002 to 20.7 percent in 2009. The percentage of sex workers with HIV stabilized from 3.2 percent in 2001 to 2.3 percent in 2009, but still ranks high among national causes of infection. The number of migrants and their spouses with HIV is also increasing.
Detected a little more than two decades ago for the first time in Nepal, HIV has now entered most of its villages, according to an SKM bulletin. The HIV pandemic is mostly transmitted by those who migrate to India for employment and through unsafe practices among drug users, according to the report. But it emphasizes that HIV is an epidemic that is a threat to the entire population – not limited to a specific community or class of people.
But others say that hospitals don’t discriminate against people living with HIV and that the government has been working to achieve universal access to care for all.
“Patients with HIV infection aren’t discriminated against,” says Dr. Prem Khadka of Tribhuvan University, TU, Teaching Hospital in Kathmandu. “All patients are treated equally in the hospital.”
He says stories like Rana’s and Shah’s are likely just misunderstandings.
“Knowing their status might cause certain delays for patients who require surgery because special considerations have to be made before the operation, which could make them feel discriminated against,” he says.
He says that the hospital organizes timely counseling for the newly infected, regular health checkups for the patients and free distribution of antiretroviral therapy, ART. But according to hospital statistics, just 30 people come to the hospital each day for medication or for counseling.
The total recorded number of health care centers in 2009 was 13,005, according to NCASC. There are 23 district hospitals that distribute ART and 35 ART clinics across Nepal. Still, Nepalis in remote areas have to walk for two days to reach a center to obtain treatment, says Rajiv Kafle, NAPN chairman.
“Out of the infected people, 5,000 people are undergoing free antiretroviral therapy as per their health status,” Rai says.
He says the government has also implemented policies to reduce stigmatization.
“The government introduced policies since January 2008 to end the miserable situation of the infected and to provide economic security,” he says.
The government has publicly disseminated multiple policies and strategic plans regarding HIV/AIDS prevention and universal access in line with the Millennium Development Goals, MDGs, a global U.N. initiative. Nepal’s 2010 MDG progress report classified halting and beginning to reverse the spread of HIV/AIDS, part of goal six, as achievable by 2015 – but only with major changes.
The progress report suggests increasing coverage of HIV prevention activities for risk groups – injecting drug users, female sex workers and men who have sex with men – and developing appropriate strategies to reach high-risk Nepali migrants, to India in particular. It also recommends further measures to ensure access to treatment and psychosocial support for those living with HIV, including children.
Madhav Raj Pant, a counselor who has been working in this sector for years, says that the government and the nongovernmental sectors have invested a lot to reduce the discrimination and stigmatization of HIV. But he says they have remained unsuccessful because of the prevailing social structure.
“There is no way out from discrimination and stigmatization,” Pant says.
With the support of various national and international NGOs, HIV-positive people have been leading trainings, orientations and economic empowerment programs themselves in order to change this. But Shah says that despite these efforts, ostracism and discrimination persist.
Doctors and nurses at Bir Hospital and TU Teaching Hospital receive sporadic trainings on HIV/AIDS. According to SMK, one of the NGOs that provide these trainings, it suggests areas of improvement and informs them about the problems faced by those with HIV who seek care there.
But Goma Rai, SMK chairwoman, says that many times the doctors and the nurses they train are either transferred to other hospitals or receive a promotion and the new doctors and nurses who replace them have little experience with HIV cases. She says that the budget is always scarce to train health professionals on these issues and that the trainings can’t keep up with the job shifts, leading to a cycle of discrimination.
Kafle says lack of public and private funding for HIV/AIDS is a problem here.
“There is a long way to go and a lot more to be done, but it cannot be done due to lack of funds,” Kafle says.
Sedhai of the SMK training center says they will continue to fight.
“We are equally fighting and struggling against our disease, against the discrimination upon us and for our rights,” she says.
