By David Trilling
Bishkek’s lack of hospice care means people like Vitaly Korolkov have nowhere to go when they are dying of AIDS. A few days after this photograph was taken, in July, Vitaly passed away in a nearby ditch. (Photo: David Trilling)
This summer, Vitaly Korolkov, 38, was homeless, HIV-positive, and a recovering heroin addict. He began methadone treatment the last time he got out of prison, three years ago, because, as he put it, “I just want to live, don’t know how much time I have left.”
Vitaly had been in prison for theft – he stole to feed his habit. An ethnic Russian citizen of Kyrgyzstan, Vitaly, upon his release, wanted to visit his family in Russia’s Far East, where they’d emigrated following the collapse of the Soviet Union in 1991.
“I’m all alone here,” he told me one morning in July after drinking his daily dose of methadone at a Bishkek clinic. But as an HIV-positive ex-con, he had been refused a Russian visa. And besides, Vitaly’s ashamed father had disowned him.
A few days after our conversation, Vitaly died of AIDS-related illnesses. Some acquaintances found his corpse in a ditch about four days later. “Because it was hot, his body smelled and no one wanted to take him to the morgue,” said Svetlana Kovalitskaya, a friend and social worker who had helped Vitaly since 2009.
Vitaly knew he was dying, according to friends. And he had nowhere to go but the drainage pipe where he slept. Despite the multi-million dollar efforts of international aid agencies, local NGOs, and the Kyrgyz government, there are currently no hospices in Bishkek providing end-of-life care. Most terminally ill people depend on their families, but Vitaly, and many others suffering from full-blown AIDS and scorned because of the associated stigma, do not have that luxury.
When we met, Vitaly didn’t mention how sick he was. He’d been in and out of the hospital for infections, including spinal tuberculosis. Friends said he was often discharged too early and received sub-standard treatment because of his HIV status. “Last time Vitaly went to the hospital, they put him for 10 days in an abandoned basement toilet. Visitors couldn’t even find him on the registration list,” Kovalitskaya said.
Reports of such discrimination – including doctors refusing to provide care for people with HIV, or demanding danger pay – are widespread throughout Central Asia. Kyrgyzstan, however, with its methadone programs and needle exchanges, is considered to be among the more progressive countries in a region plagued by cheap heroin from Afghanistan. (By contrast, Turkmenistan refuses to acknowledge a single case of HIV, even though health workers there say infection rates are climbing rapidly.)
From 2010-2011, there were two hospices in Kyrgyzstan, both paid for by the Global Fund to Fight AIDS, Tuberculosis and Malaria (which is mostly funded by wealthy Western countries). But people familiar with the sites say they were not functioning as intended. One local journalist found the Bishkek hospice had admitted 11 patients over its one-year existence, none of whom were terminally ill. A few months ago, the Global Fund closed the facility, said Anna Chernyshova, who manages the organization’s grants in Kyrgyzstan. There is still a small hospice in Osh that Chernyshova says is underutilized and hard to access.
“Hospices work when a patient loses family and social ties, but there must be a strong referral system. Here we discovered that the system is not functioning and therefore we closed the hospice in Bishkek although we know […] there is a need,” Chernyshova told me.
Today, there is no place in northern Kyrgyzstan for people like Vitaly. “Most HIV patients are dying at home with their families, but many are dying wherever because of stigma in the family. This is a universal problem across the former Soviet Union,” Chernyshova said.
As Vitaly’s condition worsened, he should have been eligible for hospice care, where medical staff could have provided powerful painkillers, and helped keep him clean as he lost control of his bodily functions. But with no functioning hospices, a dignified death was out of reach.
“His situation sounds normal. I think there are a lot of people dying like that,” said Cheryl Kelly, the regional director of HIV/AIDS programs for the British government’s aid agency, DFID.
The United Nations estimates there were 9,800 HIV-positive people in Kyrgyzstan in 2009; about half are registered with the Republican AIDS Center, which distributes free antiretroviral drugs (ARVs) paid for by the Global Fund. Both Kyrgyz officials and foreign experts estimate the number could be several times higher and fear infection is rapidly spreading via migrant laborers. “It is really a serious problem for Kyrgyzstan,” said Nazarbek Mukhamedjanov, the center’s acting director.
Public health experts argue that if ARVs were more widely and consistently available, there would be less of a need for hospice care. But people are not getting the treatment they need. The Republican AIDS Center has provided ARV therapy to a total of 874 people since 1996, according to Mukhamedjanov. Western donors question the program’s effectiveness. One patient told me he had to stop treatment during his recent one-year stint in prison, though the center is supposed to ensure the availability of ARVs. He’s now out and has been waiting months to resume therapy.
Tanya Musagalieva, coordinator of social support at Asteria, a shelter that helps female drug users, says another problem is the poor availability of the tests that show when people with HIV should begin ARV therapy. “Not many people get the CD4 [test]. So they can’t even register as patients for ARV therapy and so not many people are taking ARVs,” she said.
Opinions differ on why there are problems getting ARVs to people who need them. One Western donor described the Republican AIDS Center as a corrupt, bureaucratic government agency suffering a leadership crisis, adding that it “is impotent and in complete disarray.”
Government officials and some local NGOS, meanwhile, blame the Global Fund for not distributing its money fast enough. The Fund, which has spent over $22 million on HIV programs in Kyrgyzstan since 2003, stopped providing cash directly to the government in 2011 after determining that millions of dollars had been misspent. While the arguments continue, people like Vitaly are falling through the cracks.
At Matritsa, a shelter for HIV-positive people where Vitaly often spent a few nights at a time, a social worker said staffers were not equipped to take care of him. He had open lesions and was unable to control his bladder: “In the last days, he was in such a bad condition he couldn’t stay here anymore. He needed professional medical care. He was very sick and there was nowhere for him to go.”
“Vitaly predicted his death,” said his friend Kovalitskaya. “He said, ‘I can see myself sitting there helpless and no one is looking at me.’ That’s the problem with this society. People are dying on the streets and no one even pays attention.”
David Trilling is EurasiaNet’s Central Asia editor.