Living Misunderstood: HIV patients complain of social stigmas

Those who have tested positive for Human Immunodeficiency Virus (HIV) in Armenia complain that despite advancements in the understanding of the disease, they continue to be discriminated against and ostracized.

Most do not reveal their illness to their parents and, certainly, do not let it be known in the workplace.

Sona Sahakyan, 35, tested positive 13 years ago. Her parents are unaware of her condition as are her colleagues where she works as a teacher. She says she would have big problems if people at her job found out. (Names of HIV patients in this article have been changed to protect their identity.)

“Why doesn’t society change? Because the theory is one thing and actually seeing the person is another thing? One must have the courage. Don’t I have the courage? I am ready but the society is not. The media must spread the information all year round, not just on December 1,” Sona said, referring to the international day dedicated to HIV awareness. “I do not understand why we keep it a secret, we have a problem and we must keep it a secret, why, what’s the point? Of course, we should not voice it, but even the pills I take secretly, all these are obstacles. Thus, we are afraid of the society, I may say, that yes, I am.”

Sara Poghosyan, 36, found out about her HIV status at 20 when she was three-months pregnant. She was infected by her husband.

“I did not want to become a book of complaints and constantly whine about everything. My children give me strength, I have no right to be weak. My husband’s family knows about this problem, which is inevitable, because we live together. My parents don’t know. I have two daughters, and I can imagine my parents’ state. If they find out, willy-nilly subconsciously they will blame my husband, no? But even I had no problem forgiving him, our relations are quite normal. After all, if they know about it, my life will not change, on the contrary, their worries and problems will add up,” Sara said.

She also said that in Armenia people associate AIDS to prostitution, drug addiction, not considering the fact that 98 percent of Armenian women get infected from their own husbands, the latter are their only partners, and who are neither drug addicts nor prostitutes.

“HIV does not consider religion, or race, or morality, or material status, nobody is insured, and this is not a disease of a certain group,” she said.

According to data from the Armenian Ministry of Healthcare AIDS prevention state center, first records of HIV cases date to 1988, and since then 1,761 cases of HIV were recorded in Armenia, with 238 in 2013. This is the biggest amount among all previous years. Among overall HIV carriers the majority are men – 70 percent, and 54 percent of them ages 25-39.

HIV patients say that often in various spheres of life the discrimination is as invincible as the virus itself. They also mention that their rights are most often violated in medical institutions.

“The only health center where rights are not violated is the AIDS preventions center. First I thought that we need time, later they will change, and finally, medical staff goes through so many trainings, but life shows that it is quite difficult to break the stereotypes,” says Sam Tadevosyan, Real World, Real People (RWRP) NGO president.

Tadevosyan’s organization tries to improve quality of life of HIV patients, they defend their and their families’ rights. RWRP social worker Lilit Aleksanyan said that according to the Armenian legislation, each person, regardless of HIV status, has constitutional rights, but they are often violated by doctors.

“In 2013 I helped one of our beneficiaries to undergo a surgery within the free medical help services guaranteed by the state. I accompanied her to the medical center, spoke to the doctor for about half an hour convincing him to do the surgery, although he was supposed to do it. At the conversation I also reminded him about my patient’s confidentiality rights. The doctor realized the surgery, but the whole staff found out about the patient’s HIV status explaining that he had to reveal the status so that the staff used medical gloves,” Aleksanyan said.

Aleksanyan said that often doctors try to refuse operating on HIV patients, justifying the denial by an absence of a necessary specialist or equipment, by different excuses they avoid as much as possible.

“And recently a case happened when the head of the department of a certain hospital approached me and said, ‘Would you please take that patient to another hospital, do not do the surgery here’, and I ask why and what’s the difference, he said, ‘Well, you know, our doctors are very young, what if they accidentally cut a finger’,” she said.

As a rule, HIV patients prefer to stay silent, they do not fight for restoring their rights, because they are not sure if the question will be solved in Armenia.

“By now we have not had a case of complaint. We, of course, encourage them to defend their own rights, to take a step, to proceed, and if several doctors are fired, then the rest will understand that if they do not respect the rights in a humanly manner, then, within the law, they will have to,” Tadevosyan said.