'In six months I'll be dead': Russian activists warn of looming spike in AIDS deaths

August 22, 2017 12:31 GMT

Yelizaveta Mayetnaya and Robert Coalson

If the Russian government doesn't quickly start doing more to combat the spread of HIV infections and to treat those already infected, activists say, the country can expect 20,000 AIDS deaths this year and more in the following years. (illustrative photo)

MOSCOW – Activists in Russia are warning that the country faces a dramatic rise in the number of deaths from AIDS because of the government's failure to fund the battle to stop the spread of HIV, the virus that causes the deadly disease.

With more than 900,000 people in Russia on the official register of HIV infections, the government has budgeted only 17.5 billion rubles ($297 million) for treatment.

Experts with the Federal AIDS Center say at least five times that amount is needed.

"The [current] budget only allows 300,000 people to undergo treatment," center Director Vadim Pokrovsky told RFE/RL. "So we are only taking those who have the most serious immune-system deficiencies – those who are in immediate danger of developing full-blown AIDS."

According to the UNAIDS program, about 50 percent of HIV-infected people worldwide are receiving antiretroviral therapy, while in Russia, that figure is just one-third.

At the same time, the rate of new infections in Russia is running at about 100,000 per year, according to UNAIDS. Pokrovsky said this aggravates the "imbalance" between the number of people requiring treatment and the amount of medicine available.

In 2016, 17,500 people died of AIDS in Russia, according to official figures. This year, Pokrovsky predicted, that figure will likely top 20,000 as part of an ongoing upward trend.

"And that is according to [the state statistics agency] Rosstat," Pokrovsky said. "According to our data, many more could die."

By comparison, according to UNAIDS, there were 22,000 AIDS-related deaths in Western and Central Europe and North America combined in 2015.

"There is no planned increase in funding for HIV treatment before 2019," Pokrovsky added. "I think this is a big shortcoming. The government and the State Duma must significantly increase this budget if they don't want to see tens of thousands more people dying."

A patient is examined at a mobile HIV testing unit in Yekaterinburg in 2016.

This year Russia's Health Ministry adopted a federal registry of patients with immune deficiencies or tuberculosis that was intended to enable patients to get treatment no matter where they officially reside. So far, the system generally seems to be working and new patients in regions across the country are able to register when they relocate.

Except for Moscow.

Yelena is 48 and has been HIV-positive for 10 years. She asked not to be identified by her last name because only her close family knows about her HIV status. She lives with her daughter in Moscow, but once a month she takes the six-hour trip to her hometown to get her medicine. Since the hospital is closed on weekends, she has to ask for time off from work for each trip.

"My doctor called me from the regional AIDS center and said that she received a very strange response from Moscow about my case and that she doesn't even know how to respond," Yelena said. "It said that I could be registered at a Moscow center if my native AIDS center sent me with a one-year supply of medicine. Needless to say, my doctors are in shock."

Aleksandr Yezdakov, who is HIV-positive, is from Perm. He estimates he knows of a dozen cases of patients who are living in Moscow but who have been refused registration at AIDS centers in the capital.

"Moscow is the only region that is not following the law and is violating the rights of patients by simply refusing to register them," Yezdakov said. "I consider this an outrageous situation. Health officials who should be guarding our health and standing on the side of patients are acting against patients.

"It is one thing for patients who can go once a month to their hometown," he added. "But what about people who used to live in the Far East or in Siberia? You can't just go there every time you need your medicine. Moreover, quite often people simply can't [travel] to get their medicine because of their poor health."

Around the country, regional AIDS centers are strained because the medications they have been allotted are insufficient for their current patients, to say nothing of the new HIV infections that are reported daily.

According to UNAIDS statistics, more than 50 percent of new infections are the result of transmission via heterosexual intercourse.

Pereboi.ru, the website of the nongovernmental support group Patient Control, features hundreds of notes from HIV patients complaining about problems with their treatment.

Valeria from Moscow writes: "Today they did not give me one of the medications that I normally get, telling me they have run out." Olesya from Kaliningrad writes: "For the third straight month, they gave me different medicines. The one they gave me this time wasn't even an analog. I know that you can't change up your meds so often, but the doctors just tell me, 'Take what we've got.'"

Yulia from Rostov-on-Don writes that after a long search, she was able to find her medication through a local support group, "although it is expired."

Pokrovsky of the Federal AIDS Center emphasizes that it will take much more than just additional funding for treatment to forestall the crisis that looms increasingly large in Russia's future.

"According to UNAIDS, Russia is in third place [worldwide] in terms of the rate of new infections after South Africa and Nigeria," he said. "We need to greatly increase the resources allocated for prophylactic work and to adopt the methods that have already proven effective in Europe and developing countries. We need special programs for sex workers, for men who have sex with men, and for drug users."

Meanwhile, HIV-positive Yelena is still trying to figure out how to cope with Moscow's demand that her regional AIDS center provide her with a year's supply of her medications.

"If they stop giving me my medicine, I will be dead in six months," she said. "For those of us who are HIV-positive, antiretroviral therapy is like insulin for diabetics. We cannot live without it."

Written by RFE/RL senior correspondent Robert Coalson on the basis of reporting by RFE/RL Russian Service correspondent Yelizaveta Mayetnaya

Link to original story on RFE/RL website