Access to Fading Lives

HIV-AIDS is something that hits close to my heart.  My brother died of the disease in 1993.  One of my earliest blog posts way back in 2005 addressed the issue in Russia. Sadly, the situation here has little improved though the UN reports that the number of global HIV infections has dropped 17% in the last eight years.  33.4 million people are living with the disease worldwide, and Russia is one of the places were news cases are growing rapidly.

RIA-Novosti reports some startling statistics about HIV in Russia to mark today, World AIDS Day.  Russia reported 59,000 new cases of HIV in 2008.  The number for 2009 is expected to reach 60,000, reports Marina Semenchenko of UNAIDS Russia.   Gennady Onishchenko of the Russian Health Ministry said last week that 12,759 died from AIDS in 2008, up 14% from 2007 death toll of 11,159. He estimates that around 300,000 Russian citizens are currently living with the disease.  The horror, of course doesn’t stop there. A recent World Health Organization report says that over 1% of Russian residents are HIV-positive.

The fastest growing population are among “at-risk” youth, particularly street kids. “In a study involving street youth (aged 15-19) in St. Petersburg, 37.4% of the people surveyed were HIV-infected, with a positive HIV status strongly and independently associated with injecting drugs and sharing needles,” said the UN report.  About 37% of Russia’s 1.8 million intravenous drug users are HIV-positive.  Russia is not alone in the alarming rise of HIV cases.  Several countries in the post-communist world are posting alarming figures.

According to the report, three countries in the region – Estonia, the Russian Federation and Ukraine have HIV prevalence that exceeds 1%, with Ukraine showing the most alarming infection rate of 1.6%.

The estimated number of people living with HIV in Eastern Europe and Central Asia rose to some 1.5 million, up 66% from 2001.

In regard to the photos in the video above, Alex Majoli was quoted on The Fader:

Are the big challenges privileges for strong human beings? I would like to believe, but it’s not true. Both heroes and criminals have that imperturbability I saw in Igor, Alexey, and Oksana. It is not about courage or will, but simply about the tenacious attachment to ourselves: It’s hard to die, until the end. Many times I tried to imagine what it means to die, until the end. Many times I tried to imagine what it means to die alone, as Alexey did. I tried during my visits at the hospital, where his life was ending. I tried after all the phone calls I had with my girlfriend and my daughter. I still have no idea how that must feel.

This is not the first time I’ve faced AIDS in my life, either professionally or personally. I’ve worked on the subject various times before, and I’ve shared many thoughts with close friends affected by the virus. “So why not Russia?” I asked myself when I saw the list of possible countries to work in. I thought of all that Russian literature, from Mikhail Bulgakov to Andrei Makine, the plague, the loneliness among the characters of those novels. The collapse of the Soviet Union has profoundly affected everyone’s pride. And this extends to AIDS. They act like they know everything, when in fact they don’t. What happens in this situation? The whole story is mainly about stigma, about pride, about the lack of information.

The stories of the people I met are so sad. Igor was really young when he went to prison and his wife was killed. Oksana had emotionally shut down. Alexey was in very bad condition—he had a hole in his hip; you could see the bones—but with the ARV treatment he was already improving. AIDS wasn’t Alexey’s real problem, however. It was like fighting against a dead man already, because of all his other issues.

By the time of my second trip, most of my subjects had died. I felt sad and angry. As Portuguese poet Fernando Pessoa once wrote, “The four walls of my squalid room are at once a cell and a wilderness, a bed and a coffin. My happiest moments are those when I think nothing, want nothing and dream nothing… I savor without bitterness this absurd awareness of being nothing, this foretaste of death and extinction.” Maybe this is what Alexey felt when he died.

In 2005, I wrote, “The problem [of HIV-AIDS in Russia]  is real. All too real. It is also being consistently ignored by the Russian government and society. All one can do is scream. Scream so loud into the darkness of ignorance and denial in hopes that a ray of sense pierces through.”  Unfortunately, these words still apply today.  Only now we can also list a few post-Soviet governments as targets for our screams.