Katya moved to Moscow seven years ago and three years later — when she was pregnant with her first child — discovered she was HIV-positive.
In a country where open discussion of AIDS is rare, Katya initially didn't know where to turn. She tried her local priests, but they told her that "there's no such thing as HIV."
After going through feelings of shock, denial and helplessness, she came to accept her diagnosis with the help of her friends and family, and later by embracing religion. But it was only when she began antiretroviral therapy two years ago that the quality of her life improved.
"Before the therapy I felt weak," said Katya, who asked that her last name not be printed due to the sensitivity of the issue. "But after starting to take the [antiretroviral] medicine, my color returned, my skin stopped being transparent."
She is one of about 637,000 HIV-positive people currently registered with the Health and Social Development Ministry — a number local NGOs worry will rise dramatically after the phasing out of HIV-prevention programs funded by the Global Fund to Fight Aids, Tuberculosis and Malaria began at the end of last year.
Programs such as handing out condoms to sex workers, needle exchanges and methadone treatments that are internationally seen as successful methods to prevent the spread of HIV have been frowned upon or outright banned in Russia, where health officials argue they fuel drug-taking and other risky behavior that breeds higher infection rates.
While the Global Fund's eight-year presence in Russia was long expected to end, officials with regional nongovernmental organizations largely dependent on the group's financing say the country is now turning its back on widely accepted harm-reduction strategies and will let independent HIV-prevention groups wither and die.
"Programs relating to HIV prevention and nonmedical support for patients have been replaced with nothing," Sergei Smirnov, director of Community of People Living With HIV, a Moscow-based NGO, told The Moscow Times.
Russian health authorities now stand accused of putting vulnerable population groups at further risk for political reasons and of actively hampering the work of organizations advocating strategies the government disagrees with.
For Katya, the potential closure of independent organizations would lead to grave consequences.
"Their [NGOs'] funding must be continued, they do so much good," she said.
An Unfavorable Environment
In the wake of the Global Fund's exit, the Russian government assumed full responsibility for funding the prevention and treatment of HIV/AIDS and has pledged more money than ever accordingly.
But local health experts say the promise of increased government money will do little to save many small HIV-focused organizations in Russia's regions, which survived almost exclusively on Global Fund grants and are now experiencing an acute shortage of funds.
Such small organizations are now "facing a lack of financial support and some are on the brink of disappearing — they only really exist on paper," Smirnov said.
In the new "unfavorable environment" for NGOs, organizations specializing in harm reduction and offering support to HIV/AIDS sufferers have been forced to scale back services and cut staff, said Ivan Varentsov, a policy expert at the Andrei Rylkov Foundation for Health and Social Justice.
The shortfall in funding for NGOs specializing in preventive work has been especially severe, since the fifth and final round of the Global Fund's grant — which channeled $13.8 million to Russia as part of a total contribution of $260 million between 2004 and 2011 — was focused exclusively on HIV prevention.
In addition, doubts persist as to whether the 600 million rubles ($20 million) the Ministry of Health and Social Development has allotted to preventive programs this year will fully materialize.
Last year, less than 150 million rubles of the 500 million rubles set aside for preventive work was spent, while the rest was returned to the treasury, said Andrei Zlobin, president of Community of People Living With HIV.
As a result, Russia's HIV/AIDS outlook for 2012 appears bleak, with both government-affiliated experts and international health organizations agreeing that the funding picture is uncertain and that Russia's infection rate will continue to rise.
"We are chasing a locomotive in the sense that the number of cases is continually growing and more and more money is needed [to tackle the problem]," Natalya Ladnaya, a senior researcher at the Federal Center for AIDS, said by telephone.
What's more, the real number of HIV cases in the country could be far higher than health ministry figures suggest.
UNAIDS believes that as many as 1.2 million people, or 1 percent of Russia's adult population, are now HIV-positive — a level similar to that in Senegal and Ukraine — while the Global Fund cites Eastern Europe and Central Asia as the only region "where HIV prevalence clearly remains on the rise."
Lack of a National Strategy
In trying to limit the spread of HIV, Russia has received significant help from abroad and initially coordinated its efforts closely with international organizations such as UNAIDS and the Global Fund.
But a major failing of the government's current HIV/AIDS strategy, NGOs say, is its stubborn refusal to acknowledge the value of harm-reduction schemes backed by the Global Fund and other major international health organizations.
Recently, the government has taken active steps to hinder NGOs that provide information on the drug-addiction medicine methadone, which the World Health Organization classifies as a key component of the fight to limit the spread of HIV.
Its use in Russia is banned and is especially controversial given that in some regions up to 75 percent of HIV cases are due intravenous drug use, according to an independent narcotics report published last year.
On Feb. 3, the Federal Drug Control Service ordered the blocking of the Andrei Rylkov Foundation's website for "propagandizing the use of drugs," which has drawn sharp criticism from international health bodies.
"Russia has a duty to respect, protect and promote access to health care, including for effective drug treatment and HIV prevention," Rick Lines, executive director of Harm Reduction International, said in a statement.
"Instead, they are slamming the door on basic health information and sending the message to millions of citizens that their lives are not worth saving," he said.
In place of internationally recognized harm-reduction techniques, health experts now accuse the Russian government of failing to elaborate a coherent national strategy to tackle the country's increasing HIV incidence or provide conditions for effective HIV-prevention programs.
Government officials responsible for HIV/AIDS policy at the central level do not always have the same vision on strategy, while at the regional level institutions are often more forward-thinking, embracing up-to-date evidence-based approaches, said Jean-Elie Malkin, regional support team director for Europe and Central Asia at UNAIDS.
The fact that the health ministry and the Federal Consumer Protection Service, or Rospotrebnadzor, share responsibility for organizing the government's response to the issue only complicates matters, he added.
State preventive programs are also poorly targeted due to the failure of Russian health authorities to focus their strategies on high-risk groups, Nicolas Cantau, Global Fund portfolio manager for Eastern Europe and Central Asia, said by e-mail.
"It is crucial to focus HIV work among the population most at risk, such as intravenous drug users, sex workers and men having sex with men. However, despite overwhelming evidence and international guidelines, the Russian health ministry focuses its prevention work almost exclusively on the general population," he said.
Another problem, local NGOs say, is the short-term outlook Russian health authorities take.
The August 2011 tender the Health and Social Development Ministry announced for preventive HIV programs, for instance, was widely criticized by the Agora human rights organization and whistleblower Alexei Navalny for its short time frame and exacting requirements.
A period of just 39 days was set for preventive programs covering seven of Russia's eight federal districts, and critics claimed that such a workload could only be completed in a minimum of 11 months.
Community of People Living With HIV — jointly with other NGOs — is yet to finish its expert assessment of the tender's results, but holds little hope for its success.
The conditions set for the project were unrealistic and corners will have been cut by the implementing organization, Zlobin said.
What Should Be Done?
Health experts and NGOs agree that a change in strategy is needed if Russia is to come up with an effective response to its HIV epidemic, which claims 160 new victims a day, according to latest Health and Social Development Ministry data.
"If the government does not change its policy toward HIV in the country, all the work and benefit that were achieved over the last five to six years will be lost," said Cantau, of the Global Fund.
"This would represent a great loss of opportunity with very damaging public health consequences," he said.
UNAIDS suggested rethinking the government's stance on harm-reduction strategies and adjusting the financing of state preventive programs.
"A shift in strategy to embrace harm reduction and reprioritize existing resources could substantially cut new HIV infections," the organization wrote in its 2011 World AIDS Day report.
Meanwhile, UNAIDS regional support team director Malkin expressed optimism, highlighting the key role that civil society could play in bringing about a change in strategy.
"The hope is that, whatever the results of the upcoming [presidential] election, the political reality will push the authorities to change its HIV/AIDS response for a more pragmatic one," he said.
Smirnov and Zlobin, of Community of People Living With HIV, proposed introducing regular evaluation — as the Global Fund carried out for its initiatives — of government-funded HIV programs as a means of improving their efficiency.
They also urged the health ministry to go beyond offering token support to NGOs and open real dialogue with independent health-care professionals with years of expertise in the field.
Natalya Ladnaya, the government-affiliated expert, said scaling up state preventive programs could yield results.
"We need complex prophylactic programs with a broad scope, some concentrated on the epidemic among youth and women and some focused on the elderly, who also suffer," she told The Moscow Times.
"Only the government can do this, especially in Russia where so much is done through administrative resources," she said.