YEREVAN -- Marine, not her real name, reached out to doctors when the pain became unbearable and surgery seemed the only answer.
"I could barely walk, I had no strength anymore after losing so much weight. My bones were completely exhausted.... I couldn't stand the pain any longer," she recently told RFE/RL's Armenian Service.
Three doctors she contacted in Yerevan, Armenia's capital, for possible gastrointestinal surgery refused to treat her, she said, before a fourth agreed.
Marine, from a small town near the capital, is convinced the reason for the rejections was her HIV status. The only NGO in Armenia dealing with the rights of people with HIV says that her case is not an isolated one amid what it says is widespread prejudice in the largely conservative South Caucasus country.
One of the doctors Marine turned to denied discriminating against her, but a Health Ministry official said such prejudice persists although efforts are being made to tackle it.
HIV is a virus that attacks the body's immune system and can lead to the development of AIDS. HIV-related stigma and discrimination remains pervasive worldwide, according to the United Nations AIDS program, UNAIDS. In countries with available data, the organization says up to 21 percent of people living with HIV reported being denied health care in the past 12 months.
HIV Discrimination
In Armenia, laws are lacking to tackle such discrimination, said Zhenya Mayilian, head of Real World, Real People, an Armenian-based NGO that focuses on the rights of people living with HIV.
"The state lacks a proper mechanism for responding to such cases. First, we have no law dealing with cases of discrimination, so we have no means of punishing someone who discriminates," Mayilian told RFE/RL's Armenian Service. "If we don't have that law, the police and the prosecutor's office will not initiate criminal cases," she added.
Zhenya Mayilian, head of the Armenian NGO, Real World, Real People.
Deputy Health Minister Lena Nanushian did not deny such prejudice exists in Armenia despite efforts to reeducate medical staff.
"I think that there is still a problem of awareness among doctors. Over the years, retraining and new knowledge have probably not reached all of them. Anyway, there are such cases, I don't deny it, but it is probably related to their fears and lack of knowledge about the transmission of the virus," Nanushian told RFE/RL.
For Marine, the rejection was hard to take.
"The first doctor literally refused. The second was looking for ways not to operate, referring me to another doctor to have a stent placed," she said. "The third one sent me to a gastroenterologist and said that placing a stent (a small mesh tube typically used to hold open passages in the body) was useless and that I should have surgery, which he could not perform and that the surgeon who had referred me to him would do it."
"The fourth physician agreed to perform the surgery but requested some papers to see what stage my HIV status was at before proceeding," Marine added, explaining her worsening medical condition was linked to a gastroenteric problem that made eating very painful.
Retraining Medical Staff
Suren Stepanian, one of the three surgeons Marine says refused to operate on her, explained he had consulted with her in the past when surgery did not seem necessary. When her case became acute, he said, he had a business trip that couldn't be postponed.
"I said it was possible that I would not be able to perform that surgery. At that time, I was planning a long business trip, but I had absolutely no obligation to inform the patient about my plans. It wasn't a case of discrimination at all," Stepanian told RFE/RL.
Mayilian said her NGO took up Marine's case, even appealing to law enforcement to investigate, but the request was rejected on the grounds that no laws appeared to have been broken. Turning to the Ethics Commission at the Health Ministry is also a dead end, she said.
"The Ethics Commission is an advisory body that does not issue rulings. People living with HIV fulfill all their tax obligations to receive proper health services, justice, and social services in their country, but because they have HIV, it turns out that they are equal when it comes to paying but unequal when it comes to receiving services. Where is the justice here?" Mayilian said.
But Nanushian countered that progress has been made, noting that the country's National Center for AIDS Prevention was recently merged with the National Center for Infectious Diseases.
As a result, HIV patients are no longer isolated at one medical center, separated from other patients with infectious diseases, as they were in the past.
"Perhaps, over the past 36 years, we've also had our share of guilt for placing too much emphasis on this disease, scaring people, and contributing to the perpetuation of that fear," Nanushian said. "We are developing a more modern course of training based on the most recent knowledge for all medical workers. Workers at polyclinics have already been trained on how to identify the risk group."
Nearly 40 million people worldwide have HIV, according to 2023 data from the World Health Organization (WHO). In Armenia, the number is 4,741, according to official data, with 3,751 of them receiving treatment.
The WHO regularly updates guidelines on new methods of HIV treatment and prevention and, given that, Marine wondered why any doctor would be wary of treating her.
"I clearly understand that not telling [the doctor] about HIV is not fair; the doctor needs to know to be able to safeguard him or herself. But if you speak about it, you may not get the treatment. Besides, God knows how many people will learn about your condition afterwards," she said.
Despite the setbacks and frustrations, eventually Marine did get the necessary surgery.
"When the last doctor set a date for surgery, I took a breath and said, 'I am starting a new life here.'"