(Un)Civil Societies Report: March 16, 2004

16 March 2004, Volume 5, Number 8

IN FOCUS

REMOVING THE STIGMA OF HIV/AIDS. A report issued by the United Nations Development Program (UNDP) last month says one out of 100 adults in Eastern Europe or the CIS carries the HIV virus, primarily from injecting drug use. Eighty-percent of them are under 30. Prisons have become "incubators" for the virus, and sex trafficking as well as mother-to-child transmission are new areas of growth. The AIDS virus is no longer just a health problem, but has the potential for economic loss and further deterioration of society and its institutions, already struggling with difficult transitions for the last decade and a half.

The new report makes clear that the weakness of civil society inherited from the communist era has made it difficult to curb the HIV epidemic. In other parts of the world, nongovernmental organizations (NGOs) have stepped forward to work with governments in combating the disease. In Eastern Europe, the UNDP says, NGOs have either not existed or are too controlled by the state: "the communist institutions that dominated political life in most of this region until the 1990s prevented the development of these much needed representatives of civil society." Their absence, particularly in the post-Soviet nations, "constitutes a major institutional gap," say the report's authors, which include both expatriots and local UN staff. The absence of the individual's trust in the state is also "one of communism's most devastating legacies," they say. Those most affected by AIDS believe turning to authorities will only lead to punishment and exclusion. Still, while "former communist countries harbor the fastest growing rates of infection of the world," the hopeful sign is that "paradoxically the region also has the most potential to reverse the trend with relative ease," UNDP says.

By the same token, the report acknowledges the great role NGOs have to play in public education, harm-reduction programs such as the distribution of clean needles for drug users and condoms, and in the care of HIV patients. The number infected is as high as 1.8 million, with the statistics spiking sharply after 1999. Estonia has the highest number of cases per million people, at the level of 2,400 per million in 2002, with a total of 3,400 cases throughout the country in June 2003. Russia was next, with more than 1,800 cases per million, and Ukraine had more than 1,000, according to the UNDP's graphs, with Latvia close behind. Ukraine, Estonia, Latvia, Belarus, and Moldova have all seen ominous jumps in the infection rate. While levels are much lower in Central Asia and Caucasus, the rates there are rising significantly.

Turning around the grim statistics is going to require a change in mindset. Policymakers "can no longer afford abstract, moralistic approaches to what could become a devastating public health problem," says UNDP. Particularly in the more dangerous zones for HIV to spread in the western CIS and the northern Baltics, the UNDP advocates a better balance between criminalization and tolerance and treatment. Prison reform, harm reduction, and the more frank reporting of cases and the underlying socioeconomic causes of the disease in the media in order to break the stigma around it are no longer merely a liberal ideal, the experts say. They are practical necessities for addressing the AIDS challenge, which will dramatically increase among the labor force at least until 2025. The question for governments is not how to stop AIDS, but how to live with it. In Africa, AIDS had a significant economic impact by killing off workers and destroying businesses and local economies. This could likely happen in Eastern Europe as well. By emphasizing the economic consequences of AIDS, the UN hopes to capture the attention of governments who might have thought they could afford to ignore the problems of minority groups.

The punitive approach is not only inhumane, it does not work because the state cannot reach those most likely to spread the disease; they have no incentive to cooperate with prevention and treatment. For example, Belarus has mandatory testing of citizens and foreigners but it still has not kept the disease in check. Further denial of the rights of those already facing the stigma -- minorities, unemployed, and homosexuals -- can facilitate getting the disease and becoming even further stigmatized. The UN has developed "International Guidelines on HIV/AIDS and Human Rights" to help promote the rights-based concept of treatment and make an explicit connection between civil rights and health. These include the right to life, the right to nondiscrimination and equality in access to health care, legal representation and support, and the right to self-autonomy -- meaning consent for testing and treatment -- and the right to privacy. The right of all sufferers of AIDS to discuss the disease and related issues freely and publish information that can protect health was particularly noted for those involved in the sex industry. The right to education is also at issue, as children in particular may be turned away from schools. The right to nondiscrimination and equality for ethnic minorities as far as access to health care and employment was also cited as a major issue in the report.

The UNDP, like other UN agencies as well as NGOs serving the population infected with HIV, have tried to change public attitudes by developing a separate set of terminology to discuss the disease. They hope that by changing the way people talk about the problem they may change the way they think about it and get governments to take more action. Rather than use pejorative phrases like "drug addict" or "prostitute" the UNDP uses the terms "intravenous drug users" and "sex worker." The UN further shears away pejorative connotations by developing a set of acronyms -- "IDU" and "FSW" for "female sex worker." Describing the thousands of young women and men involved in the sex industry in Europe and throughout the world as "workers" has rankled some, especially conservative religious groups, who fear such terminology involves a denigration of women's dignity and a refusal to admit that prostitution is illegal in many states. If they had a choice, argue these groups, people would not choose the sex industry to make money and would opt for a safer profession. Meanwhile, the International Labor Organization and other international agencies have shrugged aside these concerns to concentrate on the facts on the ground: in the upheavals since the 1980s in Europe, sex trafficking has grown into a multimillion dollar industry, and those vulnerable people who have found work in it voluntarily, often driven by unemployment and a lack of opportunity in their homelands, as well as those who are involuntarily held, deserve the same kind of protection of health, safety, and other rights as people in any occupation have.

In keeping with the nonjudgmental terminology, instead of referring to males infected with HIV/AID as "homosexuals" or "gay," the UN shies away from making a final determination of preference, preferring the more neutral term "man having sex with men" (MDM) to denote the phenomenon of married or single men, some homosexuals, some bisexuals, and some undetermined. With homosexuality still legally banned or socially discouraged in some countries, the ambiguity means a greater likelihood that men can remain with women partners and spread HIV to their spouses and, in turn, through pregnant women to infants.

Rather than describe people as "infected," "suffering," or "afflicted" with the "disease" of AIDS, the UNDP and others working in the field prefer the more neutral -- though still euphemistic -- phrase of "people living with AIDS" (PLWA), a terminology that masks somewhat the reality that there are many people who die with AIDS. Yet international experts want governments to realize that countries in Eastern Europe and the former Soviet Union are past the point of prevention, of moral lectures, and are now in a full-blown crisis where the task will be to find ways to treat people and ameliorate their symptoms in order to arrest the rate of prevalence within the population.

To this end, rather that talk about ending drug addiction, or preventing unmarried sexual relations, or punishing homosexuals, the UNDP is trying to get governments to engage in "harm reduction," that is, reducing the harm that can come from some of these risky lifestyles. The UN makes the case that mandatory testing or jailing of those suspected of carrying AIDS merely drives them away from the health-care systems in which they might receive treatment. Prevention work involves better public-information campaigns, public-service announcements on television, sex education in schools, drug prevention programs, and universal and affordable access to voluntary counseling and HIV testing. Harm reduction goes further to encourage "safe sex" through the distribution and use of condoms, needle exchanges where drug-users can bring used syringes and trade them for clean ones, and the adoption of a nonjudgmental attitude toward "sex workers." All of these postulates have engendered controversy in governments, sometimes to the point where they have refused to fund, or have begun to roll back "harm reduction" programs.

In January, NGOs in Russia were concerned about a threat from drug-control authorities to close down "harm reduction" programs. The State Committee on Narcotics Control then retreated; NGOs involved in the programs say narcotics officials simply wanted to bring all such programs brought under their oversight. While this might at first appear to constitute a recognition and legitimacy of the programs (and would work in some localities), NGOs continued to be concerned that with this kind of control their programs could be closed either through neglect or through too many administrative demands. While needle exchanges do not appear to be criminalized any longer in Russia, "substitution therapy," in which methadone maintenance is used to replace heroin addiction, is strictly forbidden and most officials refuse even to discuss the idea, many people active in the issue report. Laws criminalizing possession of drug paraphernalia -- even for the purpose of needle exchanges -- could theoretically be enforced.

Changing not only terminology but people's thinking and practice continues to be a struggle, judging from the difficulties NGOs still have with these programs and in obtaining legal reforms to support them. Officials acknowledge that "harm reduction" is controversial. A weakness of the UNDP report is that it does not include any kind of medical or social science surveys from the academic world, or studies from other UN agencies like UNAIDS or the World Health Organization, which may prove that "harm reduction" works in this region to reduce or reverse the spread of AIDS. Given the soaring rates of HIV, it would be hard for any program to demonstrate immediate success, even under ideal circumstances. There are studies in the U.S. and in European countries that have shown the benefits of the implementation of such programs, but the research does not appear to have been done yet in Eastern Europe, or at least not widely publicized. To get reluctant parliaments and governments on board with their innovative human-rights approach to AIDS, "harm reduction" activists need to marshal the science to back the claims. Sadly, already vulnerable populations have served as an unwitting experiment of how governments can fail to cope with AIDS by penalizing and stigmatizing groups most likely to become infected.

Most advocates of "harm reduction" do not see their work in isolation from comprehensive programs that also provide help for people to end their drug addictions and move on to types of employment less risky than work in the sex industry. Also needed is better monitoring/research to discover how educated the public is about the issue, and what prevailing attitudes are towards prevention, care, and "harm reduction." Most of all, governments and multinational institutions have to find a way to convince people that 1 percent of their population -- or any small percentage of a population -- is not a number that can be taken lightly. In a region with a total population of more than 260 million, there are an estimated 1.8 million infected with HIV. This situation, at a time when Europe is uniting and workforces are becoming even more mobile, can no longer be neglected. Using the mantra of "information, leadership, and inclusion," the UN and other regional agencies hope to change the pattern of the AIDS epidemic, which has spread because of secrecy, neglect, and the ostracizing of patients.

ESTONIA HAS HIGHEST NUMBER OF HIV-INFECTED; CASES IN UKRAINE SURGE. The Baltic states are a "paradox" -- they are among the region's most developed, are slated to join the EU in May, and have already joined other European institutions, but their AIDS profiles are "extremely worrisome;" Estonia has an HIV prevalence rate of 1 percent and reports the region's most rapid growth in infections from 2002-2003. Latvia also reported sharp growth in new infections in 2001. Lithuania had far fewer cases but still had infection rates higher than the average in the region. In Estonia, at first in the 1990s, the main group living with AIDS were homosexual men but in 2000 the UN found a major HIV outbreak among injecting drug addicts within the Russian-speaking population in eastern Estonia, following an unnoticed outbreak of hepatitis B and C. In Latvia, too, most new cases are attributed to drug addicts using needles. Lithuania's worsening trends are traced to a prison outbreak in 2002, underscoring the importance of monitoring HIV better in places of detention.

Why was Estonia, a small country soon-to-be in the EU and with a higher standard of living and education than other former Soviet republics, suddenly facing such an AIDS crisis? When a total of 390 cases were registered in Estonia in 2000, 90 percent of them were intravenous drug users, says Natalya Gordienko, regional HIV/AIDS adviser for UNDP. The magnitude of the drug problem, let alone the AIDS problem, had not yet hit home. The AIDS cases steadily climbed, with 1,474 new cases in 2001. By 2002, 899 were diagnosed with the virus. Of the new cases, 80 percent are between 15 and 24 years of age. These are mainly young intravenous drug users (IDUs) who have only begun injecting and tend to share needles, making them the most vulnerable to infection. Young people under 25, sexual partners of IDUs, and sex workers are vulnerable.

Asked why the epidemic hit Estonia so hard, Gordienko told "(Un)Civil Societies" that there was no simple answer. "Many factors can be invoked," she said. "Apparently, there was an explosive outbreak of infections within the group of injecting drug users initially in the eastern territories [of Estonia], bordering Russia." At that time, in 2000, there were no HIV prevention programs and no sense of urgency on the part of the government. "For such a small country with the population of approximately 1.4 million people, who live very compactly, the delay in response inevitably resulted in a dramatic spread of HIV/AIDS." The drug culture of sharing needles and other paraphernalia helped spread the disease.

Thus, an HIV-infected IDU brought the infection into the Russian-speaking population and from there it spread to the wider population. The report writers realize the question of HIV in the Russian minority population in the Baltics is a sensitive one. Yet in the face of the AIDS epidemic, the majority populations of any country can no longer afford the luxury of thinking HIV is the problem of only a few people, but of "somebody else." No government can assume that HIV will remain a problem merely for minorities. "Respect of human rights is absolutely critical to take hold over a situation as comprehensive and multifaceted as HIV/AIDS," says Gordienko.

"Economic hardship and insecurity, the erosion or relaxation of rigid social controls, and the armed conflicts" are to blame for this reality. The trends are the same in Western capitals, and also reiterate what Russia suffered after the first World War and after the civil war of 1918-1920. Drug use increases when societies and support networks break down, producing large numbers of particularly young men who are in despair about their future and feel no sense of purpose.

Nonviolent drug users thrown into unsanitary and overcrowded conditions in prison are worsening the epidemic, and governments need to find alternative means of providing treatment. The report authors acknowledge that the balance between rehabilitation and criminalization is a subject of legitimate public debate, and the reality is that large numbers of people are leaving the prison-incubators of HIV and spreading the disease to the greater population, suggesting that only by reducing the imprisonment of nonviolent offenders and making detention conditions more humane can the epidemic be checked.

In Ukraine, AIDS programs were recently questioned by the administration of President Leonid Kuchma, which claimed that funds were being misspent, AP reported 16 February. UNDP denied allegations that it had mismanaged grants to fight HIV/AIDS, saying that it had arrangement emergency shipments of medicines. The government accused the UN-administered Global Fund to Fight AIDS, Tuberculosis, and Malaria of unjustifiably withdrawing $25 million in support for government-run programs to curb the AIDS epidemic, claiming mismanagement, delays, and shortages of medicines. Of the $25 million earmarked for Ukraine the fund has paid out $7.5 million, but only $740,000 has been spent, AP reported. The Global Fund cited major problems with programs run by the Ministry of Health and a nongovernmental organization, and lesser concerns about a UNDP-administered prevention program.

NGOs have only had 10-12 years in which to start and develop in the former Soviet republics, say UNDP officials. They lack managerial and financial accounting experience, and operate in an uncertain legal environment. The government has not regulated how governmental agencies can subcontract to NGOs to perform certain projects. "The role of NGOs is indispensable in dealing with the HIV/AIDS epidemic," says Gordienko. "They are the ones who can more easily reach the vulnerable groups and deliver services for them," she commented. She and others working in the region could not come up with many examples of successful NGO-government cooperation, but are building it slowly. The UN has worked with prominent figures such as Andrei Medvedev, the professional tennis player, to deliver the message of the need for AIDS testing on a regular basis. Currently, 20 local NGOs and the State Committee on Family and Youth are working with drug users and those in the sex trade in eight provinces of Ukraine, with 124 outreach points and over 100 outreach workers. They have also begun to work in the prisons and in the army to educate people about prevention and harm reduction.

Dmitri Vasylev, a UNDP official in Kyiv, says active individuals as well as some windows of opportunity can make a difference with a concerted effort. In Odesa, NGO leader Tatiana Semikop, who also works as a police officer, is working on harm-reduction projects. She is able to straddle the worlds of law enforcement and social activism and serve as a bridge between very different communities. In Nikolayev, officials were able to get a harm reduction station to operate in a prison. This was a breakthrough because previously prison officials claimed they had no drugs inside the prison, although places of incarceration are notorious for the availability of controlled substances. While mandatory testing has apparently been dropped in 1998, meaning that more people in trouble are willing to come forward, one area of difficulty is with "female sex workers." Because prostitution is a crime, women do not want to expose themselves to prosecution.