KYIV, UKRAINE – On this hot and sweaty July Wednesday, the smell of cats and dust in Maryna’s flat of the 5-storey Khrushchev-era building is particularly strong and repulsive. A dark hallway leads her guests to the kitchen where she’s held up with peeling potatoes for a Ukrainian borshch.
This might seem as a routine day in the life of an ordinary housewife, except for one thing – it will take Maryna four hours to cook the dish people usually cook in an hour.
36-year-old Maryna moves around her apartment in a wheelchair. Last year, she suffered a bout of tuberculosis meningitis and was in a coma for two months. The infection occurred when Maryna’s immune system was significantly weakened by progressing HIV.
Her health has deteriorated despite her knowing about her positive status for two years prior to falling into a coma. She received free HIV pills all along but left them untaken in a sock drawer at home.
“I had no reason to believe the diagnosis was real. I’ve never used drugs or worked as a prostitute. How could I have been positive?” says Maryna who is a qualified nurse.
Maryna’s case provides a glaring example of the core reason why the HIV epidemic in Ukraine remains the second largest in Eastern Europe, even though the state provides treatment to anyone for free. HIV drugs, which reduce the amount of the virus and slow down damage to the immune system, allow HIV-positive people live almost a normal life expectancy. But only 36 per cent of infected Ukrainians take medicines regularly, and a half of adults who have HIV are even not aware of their status.
This statistics largely results from the lack of knowledge about HIV among Ukrainians, which has remained unchanged since the Soviet era. People here, for the most part, are afraid to discover one has HIV or to admit to having it because they still consider it a death sentence. At the same time, the government does very little to change this attitude and considers prevention a measure of secondary importance.
“Caring too much can become interference. I was convinced it would be better for my nerves not to be aware of my HIV status for as long as possible. Because as we all know, AIDS is impossible to cure,” says 46-year-old Svitlana Lisovska who used opium in the late 1990s but learned of her status only six months ago when caught pneumocystis pneumonia, a life-threatening lung infection. And, for medical reasons, she can’t start taking HIV drugs until she cures the related disease.
It does not help that men are less likely to get tested than women. Women usually learn about their positive status when they become pregnant and show up for their prenatal visits.
Another hurdle is drug regimens. Ukrainians are remarkably bad at taking medicines. Since the local healthcare system is perceived as highly corrupt, patients don’t believe effective treatment can be offered for free.
Such lack of information gives birth to numerous myths and conspiracy beliefs about the origin of the infection ranging from the government plot to God’s will.
“In the 21st century, it takes me a couple of minutes to detect HIV. But then it may take me months to persuade a patient to swallow a life-saving pill,” says Volodymyr Ovcharenko, a social worker, after sixteen years in the field.
Although Ukraine has already grappled with the HIV epidemic for decades, the illness is still linked to stigma and prejudice. Largely, AIDS has been deemed as a disease which affects only drug users and sex workers. HIV-positive people are frightened of being associated with criminalized social groups by friends and neighbours. For this reason, they prefer to go for treatment to faraway AIDS-HIV centres instead of visiting local clinics.
“I’ve never told my mum about my status,” says Maryna and asks that her last name isn’t published because of the stigma. “How do you think I could explain it?”
Under Ukrainian legislation, no one is obliged to inform co-workers, employers, teachers, shop assistants, neighbours, etc. about his or her HIV status. The only ones who have access to this kind of information are medical workers, and thus they are commonly the source of stigma towards HIV.
“When my colleague from a therapy unit next door discovers someone’s positive status, she usually calls and shouts at me: “Take this drug addict out of my department!” says Alla Nyzhnyk, an infectious disease specialist. “Well, have you ever heard about doctor-patient confidentiality? Please, forget it if you have an HIV infection.”
While social workers involved with HIV positive people say that widespread ignorance contributes to the epidemic more than anything else does, government officials state that HIV educational campaigns are not their priority.
According to the Ministry of Health, Ukraine spent $73 million USD to fight the country’s HIV epidemic last year. The money came from the state budget, local charitable organizations and international funds. The Global Fund to Fight AIDS, Tuberculosis and Malaria itself covered about 25 per cent of expenditures. Only one-seventh of the overall sum was allocated to HIV preventive measures, and more than three quarters – to treatment.
“The epidemic is on the rise. We spend money on treatment. If we launch public campaigns, someone will be left without ARVs,” says Tetiana Krasnopolska, the head of HIV/AIDS Department under the Ministry of Health, referring to antiretroviral therapy used to treat HIV. “This will be an unpopular decision and also the inefficient use of funds.”
Employees of non-profit groups that work with HIV patients believe that prevention should be prioritised. They say that numbers of new infections appear to grow in line with the spread of HIV-related ignorance.
“I’m sure even small campaigns might work. If one motivational billboard in the street encourages one Ukrainian to come and test for HIV, I personally will consider it a huge victory,” says Volodymyr Ovcharenko.
Experts say that effective public campaigns don’t end up with motivational billboards alone. According to Olesia Pohorelova, an epidemiologist, HIV education package should include mandatory training for medical workers, safe sex courses at schools, awareness-raising programs in the media, and encouraging people to come out with their status to family and friends.
Public organizations like the All-Ukrainian Network of PLWH, which works under The Global Fund to Fight AIDS, Tuberculosis and Malaria, struggle to educate Ukrainians about HIV. They send social workers to schools to tell students about how the infection is transmitted and how HIV medicines function. But at some point, such organizations lack resources to eliminate HIV-related ignorance.
Today, Maryna might forget to add salt and pepper to her borshch but not to take her medicine at 10 am.
“Sometimes I have nightmares that I forget to take the pill, or that they will end before my social worker brings me new ones. I can’t believe two years ago I had nightmares that those medicines would kill me,” says Maryna.
After spells of long hospital stays, she ended up in a palliative care program for three months that cost the government $2,000 USD per patient. Maryna still has hopes her health will improve.
She tries her best to get back to normal life. She does her physical therapy exercises every morning and handles even the toughest household chores. Her husband promised that the next summer they would go on a beach vacation as a family. What saddens Maryna most is that she has never attended parents’ meetings at her 7 year-old daughter’s school. But this September she will.
“You see I’ve got everything. If only I could run and jump,” says Maryna. “I earnestly hope my mistakes will save someone’s life. But that is not how it is supposed to work, I’m sure... Ukraine is a truly bad place to live in if everyone here is forced to learn from mistakes, isn’t it?”