Difficult times: Living with HIV/AIDS

Anushka Nepal

Anushka Nepal

Difficult times: Living with HIV/AIDS

Photo: Abhishek Maharjan

Ravi Thapa*, a 31-year-old with HIV, was admitted at a reputed hospital in Sunsari. One of the nurses threw medicines at him. She was scared to come near him. The doctors too were reluctant to check in on him during their daily rounds. His room was never cleaned—the staff never bothered to empty the trash. His wife complained, but the hospital administration blamed the patient for ‘bringing HIV to the hospital’. Thapa says visiting hospitals is the last thing he wants to do, even if he needs medical attention.

Khagendra Khadka, president of the National Association of People Living with HIV/AIDS in Nepal (NAP+N), has been living with HIV for  26 years. Six months ago, he had a dental appointment. “I told the doctors that I have HIV. Perhaps that was my mistake because it delayed my treatment,” he says.

He was then told to do a battery of tests that, he believes, was a way of chasing him away. “The treatment went smoothly at another hospital, where they didn’t know about my condition,” he adds. Khadka says this is nothing unusual. He has been in such situations numerous times since he was diagnosed.

Anik Rana Magar, an LGBTIQA+ rights activist living with HIV for the past 25 years, says that nurses write ‘HIV positive’ in bright red letters above a patient’s bed. “This makes people stare out of curiosity. It completely violates a patient’s personal space,” she says adding doctors even deny taking on patients with HIV.

Shivaram Giri, national coordinator of NAP+N, says the situation is as vexing if not more for those requiring surgeries. “Doctors deliberately push back the date of surgery to a month or so later even in critical situations. They want the patient to seek treatment elsewhere,” he says. Giri shares an incident that happened at the Tribhuvan University Teaching Hospital (TUTH) in Maharajgunj: A person with HIV was taken to the emergency room after an accident. Everyone there, he claims, was scared to be near the patient, causing much chaos and delaying treatment.

These are only a few representative cases that show how people with HIV are treated at hospitals. According to data from National Center of AIDS and STD Control (NCASC), there are around 30,000 people currently living with HIV in Nepal. Most of them are migrant workers, drug users, sex workers, and individuals belonging to the LGBTIQA+ community.

Majority of them are facing the same problem at every hospital department except at the Antiretroviral Therapy (ART) clinics, says Pinky Gurung, president of Blue Diamond Society (BDS).

“Two years ago, we had to lose a friend as Bir Hospital was not willing to admit the patient,” says Gurung. Many hospitals, she adds, have told her to take HIV patients somewhere else. “When someone is in need of immediate medical attention, how do they expect us to run to another hospital?” she questions.

Gurung, on several occasions, has found medical professionals openly denying to treat the infected or carry out their surgeries. This, she says, goes against the medical code of ethics passed by the Nepal Medical Council Act 1964 which states that in no circumstance can a doctor refrain from treating a patient.

Dr Purnima Shakya, in-charge of ART clinic at Bir Hospital, says this is the outcome of how HIV has been perceived by our society for years. “People link HIV with having multiple sexual partners,” she says. This clouds the mindsets of even those in the medical field. They are much more comfortable working with infections more contagious than HIV. But HIV makes them uncomfortable. “It’s not an excuse but it’s true,” she says.

Dr Bhola Rijal, a consultant gynecologist and former director of TUTH, verifies the claim. He says he has seen it happen all too many times. There are, he says, many misconceptions about HIV/AIDS among people in Nepal. “Only those who have worked closely with the infected have a better understanding of this issue,” he adds.

Bleak situation 

This reality weighs heavily on those living with HIV. As they fear being judged and mocked,  many refrain from testing for HIV, even when there are clear signs of infection, says Samata Bam, program coordinator at Cruise Aids Nepal, an organization that works with/for the infected.

“Even if they do get tested, they don’t come for follow-ups. They don’t want to be seen near ART clinics because of societal stigma,” she says. Worse, many don’t seek medical aid even when they are severely ill. “They know it might cost them their lives yet they choose it over the discrimination they know they will face at hospitals,” says Bam.

Binod Kumar Gupta, ART counselor from Meeting Targets and Maintaining Epidemic Control (EpiC) Nepal, says it’s already difficult for patients to accept their test result. “Many patients have discontinued their treatment because they would rather be in denial than take lifelong medication,” he says. Terrible treatment from hospital staff pushes them even further from acceptance. This has led to a number of suicides and suicide attempts among people who are unable to adjust with the new reality of being infected by HIV.

Despite that, every month there are around 25 new HIV positive results out of the tested 150-200 individuals only at Sukraraj Tropical and Infectious Disease Hospital in Teku, Kathmandu. Manju Adhikari, chief of the ART clinic at the same hospital, informs that only few of the infected people are willing to get treated.

In the fiscal year 2021/2022 according to the World AIDS Day 2022 factsheet, published by NCASC, there were a total of 1,365 reactive (may or may not be positive but is certainly not negative) cases out of the 97,455 tested for HIV infections, which is lower in comparison to the past years.  “Even if the statistics show the number of people with HIV is decreasing, there are a lot of cases unaccounted for,” says BDS president Gurung.

“The situation was slightly better 10 years back when there was a lot of media support,” says Giri of NAP+N. “That’s not the case anymore. There’s very little reporting and awareness.”

Government’s take

Dr Samir Kumar Adhikari, deputy spokesperson at the Ministry of Health and Population (MoHP), says that the responsibility of working on anything HIV/AIDS related mostly falls under the jurisdiction of NCASC. And it has, he adds, has been working continuously to make our society friendlier for people living with HIV/AIDS. “Our job is to assist them,” he states.

Lok Raj Pandey, senior health education officer at NCASC, says the government body has done its part to spread awareness and ensure a better environment, medically as well as socially for people living with HIV. He, however, denies the HIV infected face discrimination at hospitals. “We have not received such complaints so I can’t say with certainty if that’s what is happening,” he adds.

On the other hand, activists and organizations ApEx talked to say they have relentlessly lobbied for the rights of people living with HIV/AIDS. Bam mentions that a bill to secure the rights of people with HIV/AIDS has been submitted in the past, but the government agencies have remained hostile.

“There is nothing to protect the rights of people living with HIV till this date,” she adds. Khadka from NAP+N says the government also lacks space for people with HIV to lodge a complaint. “We don’t know where to go with our problems,” he says.

He agrees with Bam on the fact that there aren’t any laws or policies that will back up those living with HIV when they face discrimination, not just at the hospitals but also in other sectors. Only a few days back, he says a child from Rautahat was not allowed to attend the school after they found out about his infection. “We had to change his school since there was no policy that could support our case,” he says, “even when the National Child Rights Council (NCRC) was on our side.”

Although the government has done its part to provide the infected with free ART services, medications, and counseling, Khadka feels the same effort cannot be seen in terms of raising awareness about HIV/AIDS, especially among medical professionals. Dr Rijal believes that unless the government is willing to advocate about HIV/AIDS all year round, like they do on World AIDS Day, it’s highly unlikely for people living with HIV to get better healthcare in the future.

*name changed