INACTION and REACTION

Miscommunication and Ignorance Surrounding Russia’s HIV/AIDS Epidemic

By Jane Mikkelson

With over 300,000 registered cases of people living with HIV/AIDS, Russia is threatened by an impending public health crisis and a near absence of political resolve to forestall it.

In the 1980s, when activists poured into the streets of New York City, when families and friends of the deceased pieced together the AIDS Quilt in San Francisco, and when “Silence = Death” was more of a household term than Reagan’s “It’s morning in America” slogan, the problem of an AIDS epidemic was the furthest thing from the Russian politician’s mind. As of then, there was no epidemic to speak of. 

Closed borders and totalitarian restrictions on sexual freedom successfully insulated Russia from the new plague that swept the US, Tanzania, and Haiti in the early eighties.  The fall of the Soviet Union, however, was accompanied by an influx of heroin and a surge in drug use, a sharp rise in prostitution and sex trafficking, and a decline in the already under-funded health care system. Such conditions engendered an environment that allowed HIV to thrive. 

Today, the numbers are staggering. According to AIDS Foundation East-West (AFEW), as of March, there were 304,653 registered cases of people living with HIV/AIDS in Russia, though the actual number, experts say, is probably closer to a million.  No longer is this an epidemic of drug users and sex workers: in 2001 only five percent of new infections were from heterosexual sex, but by 2003 that figure quadrupled to twenty percent. The rate at which HIV is spreading has risen dramatically as well; in 2004, according to estimates, the number of HIV-positive Russians grew by 20 percent, a rate exceeding that of Africa. If the statistics continue to progress in this vein, by 2008 there will be 2.5 million Russians living with HIV.

Ignorance is Bliss

Given such alarming figures and the grim prognosis for the near future, it would seem logical for the Russian government to employ every possible resource in order to suppress the epidemic.  In the case of Russia’s HIV/AIDS problem, however, logic has not proven to be one of the Putin Administration’s strongest suits.

According to Vadim Pokrovsky, the director of Russia’s Federal AIDS Center, the national budget for 2005 has made plans to expend $4.3 million on HIV/AIDS, a mere two and a half percent of the $161.7 million needed.  This complete failure in financial commitment cannot be explained away by budgetary hardships. Russia’s federal budget surplus this year is expected to weigh in at $6.23 billion, and Moscow’s lawmakers somehow found the means to increase defense spending by forty percent to $2.4 billion.

As financial restrictions do not appear to be an unwieldy burden for the government, the only other possible explanation for the lackluster response to the HIV/AIDS problem is denial.

“Russian epidemiology is a very reputable branch of science,” said Anatoly Zhebrun, director of the St. Petersburg Pasteur Institute of Epidemiology and Microbiology.  He described the history of the Russian AIDS epidemic in this way: “In the first 10 years, until about 1995, there was no growth in the number of people with HIV; there were a few isolated cases, all of which were registered. It began with homosexuals, then spread to intravenous drug users [IDUs]. The Pasteur Institute was the first to pinpoint the situation, and to find an approach--‘needle exchange’ programs. A bus drives to the parts of the city where there is the greatest concentration of drug users. They say, ‘People, give up your needles!’ and [exchange] clean ones free of charge. The used needles are then taken back and examined, and they check the blood. The problem is that [IDUs] are anonymous. They shun contact with health workers and are difficult to treat,” said Zhebrun.

“Today, too, this is an epidemic of drug users,” he said.  When asked if any testing was being done in the general, non-IDU population, Zhebrun said, “Yes, but those numbers are very small, and they are decreasing.”

A gynecologist in St. Petersburg was of the same opinion. Reticent from the start, she admitted that there had been a slight increase in the number of positive HIV test results, but was quick to add that the infected were predominantly drug addicts. When asked about treatment and counseling for the HIV-positive, she said, “I don’t know. We send them to an AIDS center. It’s out of our hands.”

Although such attitudes of near indifference from Mr. Zhebrun and the gynecologist are surprising, they seem to reflect a general pattern of thinking among Russian health professionals.  “The problem is that people who are supposed to be helping those who are ill are themselves terrified by the disease and therefore are very unlikely to provide any help,” said Nikolai Nedzelski, director of the Info Plus information center for people with HIV and AIDS in Moscow and one of the few outspoken critics of the Russian response to the epidemic, in a July 2002 edition of the San Francisco Chronicle.

Disease Without a Cure

Optimistic as Zhebrun might be, there is still cause for concern. Testing for HIV has fallen considerably since the Russian government transferred the burden of HIV/AIDS funding from federal to regional jurisdiction, and the budgets of many regional governments are already spread too thin. In part as a result of this shift, 2.5 million fewer HIV tests were conducted in 2003 than in 2002. Without an accurate estimate of Russia’s HIV/AIDS population, it is impossible to assess the costs of treatment, costs which primarily fall in the lap of regional governments.

Although there is no cure for HIV, researchers continue to make advances in the disease’s treatment. Antiretroviral (ARV) drugs, when administered in combination, impede the replication of HIV and thereby delay deterioration of the immune system and the onset of AIDS. These drugs increase the span and quality of life, and make an HIV-positive diagnosis less of an automatic death sentence. Since HIV is able to quickly mutate and become resistant to one drug, the combined administration of several different ARV drugs becomes crucial. While taking three or more drugs is more effective, it is also much more costly ($300 - $1200 per annum, according to World Health Organization), mainly because the different drugs are made by competing pharmaceutical companies.  Even in the United States, thousands remain on indefinite waiting lists to receive this “triple therapy,” and a great stretch of the imagination is not required to divine the state of HIV treatment in Russia.

In the most conservative estimates, a minimum of $91,395,900 would be needed to treat a significant portion of Russia’s HIV/AIDS victims. This constitutes a paltry 3.8 percent of Russia’s projected defense spending, but overstretches the HIV/AIDS budget by $87 million. Though the ratio of HIV/AIDS funding to defense spending is also astonishing in many developed nations, this ratio for Russia in combination with the country’s depressing AIDS situation points to where the Russian government’s priorities lie.

Granted, there are other treatment options. For instance, Russia could invest in “generics”--unpatented drugs chemically equivalent to their brand-name counterparts. Many ARV generics are made in India, Canada, Brazil, and other countries, and the lack of brand-name recognition greatly reduces their cost. One would not be far off in attributing the government’s refusal to acquire and distribute generics to Russia’s WTO aspirations; Moscow certainly does not wish to stir the waters of the international trade community by acquiring such drugs.

Russia could also choose to cooperate with any one of the many non-governmental organizations (NGOs) seeking to provide assistance. The William J. Clinton Presidential Foundation, for example, has brokered deals with pharmaceutical companies, in which the foundation sells ARV generics at a reduced cost to countries particularly ravaged by HIV/AIDS. The Clinton Foundation also managed to convince more prosperous nations to finance the purchase of such drugs. Ireland and Canada have already pledged millions to the cause, and countries such as Mozambique, Tanzania, Rwanda, and South Africa expect to receive the reduced-price drugs by 2008. The Russian Ministry of Health did not respond to the Clinton Foundation when such an offer was made, reported the Kommersant (May 17, 2004).

Perhaps it was the prospect of being likened to developing African countries that prompted that refusal. “Everyone thinks that there is such a grave epidemic in Russia,” says Zhebrun. “Russia might be among the more seriously affected European countries, but our situation is not comparable to those in African and Asian countries.” 

Nevertheless, Zhebrun did concede that in 2008, when most of the currently HIV-positive Russians will enter the final stage of the disease, AIDS, Russia will need to rely on outside assistance for medical treatment. “HIV-positive people are not sick,” he said, “Only those in the final phase of AIDS are sick.” When asked to comment on the Ministry of Health’s refusal to accept the Clinton Foundation’s proposal, Zhebrun said,  “I don’t know anything about that. Negotiations are under way.”

Health Education

While HIV is currently an incurable disease, it is to a large extent a preventable one--perhaps that is the most frustrating aspect of the HIV crisis in Russia and elsewhere. Widespread misconceptions and miseducation contribute to the epidemic just as much as the drug abuse and unsafe sex practices themselves. Although the Russian Longitudinal Monitoring Survey led by the University of North Carolina shows that 75 percent of Russians believe that AIDS can be prevented, only 59 percent believe that regular condom use reduces chances of infection.

Lingering Soviet prudishness and a vigorous anti-sex campaign led by the Russian Orthodox Church have contributed to the essential absence of sex education in public schools, which, in turn, fuels common misconceptions among an increasingly sexually active youth. Most Russian women are wary of using the pill, fearing that the hormones will have adverse side effects, and they react with equal skepticism to other forms of contraception. In fact, abortion has been the most common form of birth control since the Soviet Union became the first country in the world to legalize it in 1920, and even today, the average Russian woman has between 4 and 10 abortions in her lifetime.

“Today’s discussions of sex education in Russia are conducted at the same level as in the 1950s or even at the end of the 19th century,” wrote leading Russian sexologist Igor Kon in an article posted on his website. “Many issues that are openly discussed by youth are not brought up at all and remain taboo in order not to tempt the younger generation,” he said.

While polls show that most Russians are in favor of introducing sex education into the school curriculum, the question of who will teach it remains unresolved. A survey conducted by the Russian Academy of Sciences’ Institute of Ethnology and Anthropology revealed that 78 percent of teachers believe sex education should be provided by parents, while only 20 percent of Russian teenagers feel that turning to their parents to discuss issues of sexuality is a viable and appropriate option. 

This absence of education affects not only the epidemic itself, but the treatment of those who are already HIV-positive. The Russian society of today is not only unaccommodating; it displays outright hostility toward people living with HIV/AIDS. The infected often lose their jobs, are refused basic treatments, and face discrimination on a daily basis. In fact, the stigma associated with being HIV-positive is so great that many do not report their condition at all.

Although Russian legislation guarantees that every Russian citizen has an equal right to receive medical care, “treatment [for HIV/AIDS] is expensive, and it’s not provided to active drug users. People have to sign a contract that they will continue to come every month; if they don’t, they know they can be taken out of the program. We know all of the people on treatment. We know who can be trusted and who cannot,” said Elana Vinogradova, chief doctor at the St. Petersburg AIDS center, in the December 2004 HIV/AIDS Policy and Law Review. Andrey, HIV-positive and a drug user, described his personal experience with obtaining treatment. “At the AIDS Centre you have to prove that you are a ‘benefit to society’ in order to get any treatment, even palliative care,” he said.

The Growing Tip of the Iceberg

As the Russian federal government largely chooses to close its eyes (or at least its pockets) on the AIDS epidemic, many western NGOs have taken up the fight.  Neill McKee, who is currently working with Johns Hopkins University to set up a foundation for HIV/AIDS prevention and care called Healthy Russia 2020, said there has been satisfactory cooperation with the regional governments, specifically in the regions of Saratov, Orenburg, Ivanovo, and Irkutsk. He agreed that denial is a problem, in that HIV/AIDS is still widely regarded as a disease solely of drug users and sex workers, but also pointed out that it is only one of very many health problems to threaten the Russian population.

“A Russian man on average dies at 59 because of alcoholism, poor diet, lack of exercise, heart disease, tuberculosis, suicide, and accidents,” said McKee. “The government has a lot on its plate.”

Even so, if nothing is done in the way of preventing further spread of the epidemic, Russia’s AIDS crisis will reach an unprecedented level. There exists no concerted effort on behalf of the Russian government to comprehend the gravity of the situation.  Politicians are content with reassuring statistics from the Ministry of Health which point to an annually decreasing rate of HIV infection, and they do not pause to consider that such figures are based only upon the testing of a handful of IDUs and do not take into account HIV’s prevalence in the general population. That in the next decade some 300,000 Russians will die of AIDS is a fact.

Meanwhile, Russia’s youth continues to practice unsafe sex and turn to intravenous drugs, not realizing the harm in doing so. A few lucky IDUs receive clean syringes courtesy of the Pasteur Institute--an action akin to placing a band-aid on a bleeding wound. Russian medical officials continue to deny treatment to thousands of HIV-positive Russians, and many HIV-positive Russians lose their jobs, remain ostracized by friends and family, and find that their healthy children are not admitted into schools. The government continually refuses to increase funding for awareness programs, take basic preventative measures, provide adequate and equal treatment or even acknowledge the fact that Russia faces a rapidly growing HIV/AIDS epidemic.

“Ultimately, Russia must ask itself: How many Russians have to die before the Russian government begins to take this seriously?” said Vinay Saldanha, head of the Canada AIDS Russia Project, in an August 2004 edition of the Christian Science Monitor. “Russia is the only member of the G-8 that does not provide comprehensive prevention, care, and support for people with HIV and AIDS,” he said. Clearly, what is being performed on Russia’s political stage is not indicative of the drama behind the scenes.