In eastern Ukraine, a glimmer of hope for women inmates living with HIV
By Jodi Hilton and Nicolas Douillet
On a recent afternoon, 40 inmates lined up to voluntarily take an HIV test at the only women’s prison in Mariupol, situated amidst the conflict in eastern Ukraine. Dr. Oleg Onishchenko, the prison medical director, opens the individually packed tests, which include a sterile needle, and test strip. Much like an early pregnancy test, the plastic strip quickly shows a low immune cell count with two stripes inside of one.
Onishchenko says that 10 to 15 percent of the prisoners have tested positive for HIV. Once the prisoners started taking medications, there was a noticeable improvement in their health. “Mortality rates declined,” he says.
Nadeshda, 31, and Liudmila, 29, are two of the inmates taking the life-saving therapy.
The women met in prison. They share fair skin, clear blue eyes, and friendship. Both are mothers of young boys, who live with family members. Neither have disclosed their status to their children, to protect them from the stigma. They spend long days as sewing-machine operators at the prison factory, where they work one behind the other. They take their meals together and sleep side-by-side in the same dormitory.
Nadeshda was an intravenous drug user, and Ludmila says she got HIV from a boyfriend who she was with before prison. “Most likely he knew about it and just didn’t tell me,” she says.
Neither Nadeshda nor Liudmila knew their status until they were tested in prison. They had no symptoms, although Nadeshda knew she was at risk. “I can’t say that I was very shocked when I found out,” says Nadeshda, “but I didn’t expect that I had it.”
Ukraine has one of Europe’s highest HIV rates, complicated by a high burden of multi-drug resistant tuberculosis. According to the statistics for 2015, there were 230,000 people in Ukraine living with HIV out of a population of 42.6 million, and 7,900 deaths were attributed to AIDS. Sex workers, prisoners, men who have sex with men and drug users are disproportionately affected, but in recent years, the primary means of transmission moved from IV drug use to heterosexual sex.
Mariupol, a large industrial city in the Donetsk Oblast, sits on the Ukrainian side of the frontline across from the self-proclaimed Donestk People’s Republic, held by pro-Russian separatists. The three year-old armed conflict and resulting economic crisis has worried healthcare advocates.
SAFER AND HEALTHIER BEHIND PRISON WALLS
The women’s prison sits on the edge of the city, 20 kilometers from the frontline where clashes continue. Occasionally, the booms of missiles can be heard. The high walls and security are designed to keep the prisoners in, but behind the heavy gates, the prisoners have better access to health care.
The prisoners stay healthy thanks to antiretroviral drugs distributed by the All-Ukrainian Network of the People Living with HIV/AIDS, a civil society organization working to help HIV positive prisoners. Across the country, they collaborate with the government and prison officials, as well as partners like UNDP. Liudmila and Nadeshda have been on treatment for six and ten months, respectively.
Across Ukraine, there are 60,000 inmates and 4,000 of them are HIV positive. Of the 148 female inmates held at Mariupol, twelve have tested HIV positive and eight are currently being treated with anti-retroviral medicine.
HIV is heavily stigmatized in Ukraine. “The hardest moment is when the inmates find out they are HIV positive,” says Viktoria Kharitiniuk, a social worker in the prison.
Oleksander Gatiiatullin, a former inmate himself, heads the prison implementation system for the All-Ukrainian Network. Before his organization began working with inmates, there was no testing, no information on how HIV spreads, and no social or psychological help. Although in many cases, information is still lacking and prisons severely understaffed to handle health cases, he says things used to be a lot worse. “On one day you would see a person fully functioning and a few days later, he dies of pneumonia with no access to medical assistance,” he remembers. In many cases, he saw medical personnel refuse to treat HIV patients.
Thanks to Oleksander’s personal efforts, the Ministry of Justice is now providing a better standard of care to inmates in several prisons. In 13 cases, the European Court of Human Rights decided in favor of inmates who were denied access to medical care, awarding them Euro 230,000.
OUTSIDE THE WALLS, HOW THE OTHER HALF LIVES
Outside of the prison, patients and their families are often left to their own devices. Advanced medical care is unaffordable to many patients and families in a country where the average income is less than $200 per month.
The conflict has made things worse.
People in Mariupol have a strong sense of insecurity, due to the presence of armed groups and a weakening economy. Prostitution, one result of economic hardship, has increased the rate of transmission of HIV and other communicable diseases.
The fighting has also complicated methods for diagnosis and procurement of antiretroviral medicine. The Ukrainian government is thus far unable to provide sufficient treatment options, leaving responsibility for procurement in the hands of international actors.
In Mariupol, testing and treatments for HIV and tuberculosis (TB) are provided free of cost, thanks to drug procurement programs led by the UNDP and others. Clinics, like the Mariupol HIV Center, are currently providing free HIV testing and care to the 5,419 HIV positive people registered in Mariupol municipality, including those who fled the conflict. But supplemental medicines aren’t free, and x-rays and more advanced tests, like those used to diagnose TB infections, can be cost-prohibitive for low-income patients. Even general expenses, like gauze and public transport, can easily overwhelm them.
Whereas inside the prison, doctors have to treat patients regardless of their HIV status, in Mariupol, medical staff are not always good to people who are HIV positive. Local AIDS Center staff sometimes have to call the hospital to pressure them to take in HIV positive patients for treatment.
Meanwhile, doctors in Mariupol aren’t certain what level of care is being provided to patients on the opposite side of the frontline. Representatives from the self-proclaimed Republic don’t provide that kind of data to the Ukrainian government’s Ministry of Health. Rumors indicate that anti-retroviral treatment (ART) and TB medications are in short supply.
“I HAD NO IDEA WHAT HIV WAS”
Yana has been suffering from spinal tuberculosis, which often develops alongside HIV. At 38 years old, the former factory engineer and mother of a six-year-old son spends her days lying in bed in her Mariupol flat.
She contracted HIV from her husband, who died of the disease. “When I learned I had HIV, I had no idea what that was.” She explained that, at the time, there was no public information about the condition. Due to the stigma associated with it, she says she doesn’t want to show her face or have her family members identified.
Spinal tuberculosis destroys the space between vertebrae, leading to collapse of the spine and sometimes, paralysis. Yana has had four operations at the main hospital in Donetsk in which metal supports were inserted into her spine.
Donetsk was once home to the region’s best hospitals and surgeons, capable of undertaking complicated surgery. But in 2014, Donetsk city, the capital of the region which includes Mariupol, fell into the hands of pro-Russian separatists. The hospitals are still operating, but some doctors and nurses have left.
Ambulances weren’t crossing the frontline. Yana couldn’t ride in a car because she couldn’t sit up, forcing her to extend her stay in the hospital. After seven months in recovery, Yana was well enough to take a taxi home to Mariupol. She lay flat in the backseat of the taxi during the excruciating day-long trip, delayed at multiple checkpoints.
Yana says she lives in constant pain. In addition to painkillers and ART, she needs physical therapy and massages, without which she has little chance of recovery. ART is provided for free to HIV positive patients. But Yana is unable to see or speak to her doctors in Donetsk and she is feeling hopeless. She says her six year-old son dreams of becoming a chemist so he can invent something to treat his mother’s pain.
Despite the challenges, there’s a glimmer of hope that things might change. The Ukrainian government has launched an HIV prevention and education campaign, with posters of both heterosexual and same-sex couples advocating for safe sex and HIV testing. In June this year, UNDP also delivered US dollars 3 million worth of HIV drugs and equipment across Ukraine.
There has been positive collaboration between UN agencies, local and international NGOs and the Ukrainian government, and a plan in place to tackle the problem together. The free distribution of ART has helped stabilize HIV positive patients, like Nadeshda and Lidumila, and help them live longer.
For the time being, Nadeshda and Liudmila lean on each other and are feeling optimistic. They are participating in the “Future Club”, a support group for HIV positive prisoners. “It was our decision to join the club — we get all sorts of support from this community,” says Nadeshda.
Starting in 2015, UNDP Ukraine has been procuring a range of medicines and medical products, including HIV-related ones, for the state budget funds as an emergency measure. The programme is also developing the capacity needed to build and support a transparent and cost-effective procurement system for the Ministry. In addition, UNDP Ukraine works with various partners to strengthen the response to HIV by national programs.
If you enjoyed this piece, remember to click the heart below and recommend the story to others.
