One Year After UNGASS: An Open Letter to Harm Reduction Workers in Central and Eastern Europe and the former Soviet Union

One year after a landmark United Nations meeting about the global AIDS epidemic, Kasia Malinowska-Sempruch, the director of the International Harm Reduction Development Program (IHRD) of the Open Society Institute, assesses the status of anti-HIV efforts and harm reduction developments in Central and Eastern Europe and the former Soviet Union. Are countries in the region complying with the Declaration of Commitment they signed at the meeting—and if not, what can civil society do?

June 2002

A year has passed since the United Nations General Assembly Special Session on HIV/AIDS (UNGASS) was held in New York City in June 2001. At the meeting, the Open Society Institute joined many other nongovernmental organizations (NGOs) in advocacy efforts, providing information on resources in the region and helping steer delegates toward adopting the most forward-thinking and aggressive policy document possible. It is now time to consider whether anti-HIV developments — if they have been increased at all since UNGASS — have been useful or merely misguided. NGOs and others working with people with HIV/AIDS deserve better, and it is appropriate to demand that governments take their UNGASS pledges seriously as the epidemic continues to spread.

Recent anecdotal evidence has not been encouraging. An NGO worker in Ukraine recently reported that although her country's government "has officially recognized the HIV epidemic, [they] still pay no attention to solving it." The worker notes that little has been done to increase access to treatment for people with HIV: "In 2000 the government had budgeted antiretroviral treatment for 10 (!) people; in 2001 the same amount of money was assigned but the medicines were not purchased; and in 2002 the funding for treatment has still not been increased."

A civil society worker in Georgia has a similar story, noting that in the first few months of 2002 "there are just four patients on full treatment" in the country and "the others can't even buy [antiretrovirals] because they are not even available in pharmacies. So the only option is to get medications from other countries." That worker also pointed to the strong discrimination that exists. Apparently it is still acceptable for some people in Georgia to "say that we have to burn or kill or isolate" all HIV-infected people.

NGO workers from nearly all countries in the region state that there are few legal protections for people with HIV, which is yet another reason the epidemic often remains underground and therefore difficult to address.

HIV/AIDS at the Time of UNGASS and Beyond

There is no denying that UNGASS was a landmark meeting. For the first time, politicians, health care officials, and patient advocates from around the world all agreed that HIV/AIDS can be halted only by pooling resources across national borders and by striving to effect major changes in attitude, lifestyle and communication in nearly all levels of society. If adhered to, the Declaration of Commitment on HIV/AIDS signed by all participants could make a huge difference. It is not a perfect document, but it marks a major step toward slowing down the epidemic — assuming, of course, that policy makers actually implement its provisions.

Africa, with an estimated 75 percent of the world's HIV positive people, received the most attention at UNGASS, but plenty of discussion focused on other regions on the cusp of overwhelming epidemics. Representatives from 24 countries in Central and Eastern Europe and the former Soviet Union (CEE/fSU) delivered speeches — many of them eloquent and passionate descriptions of the social problems (primarily rapidly increasing injecting drug use and unprotected sex work) that form the core of HIV/AIDS growth in their countries.

The number of people with HIV in CEE/fSU is much smaller than in the hard-hit areas of Africa. However, this may not be the case much longer because the infection rate has jumped so significantly. In Russia, there has been an estimated 15-fold increase in the number of HIV positive people in the past three years alone. Of the nearly 200,000 officially registered infections in that country, more than half were reported in 2001, an astounding and frightening leap.

Writing in the New York Times on November 29, 2001, Lawrence K. Altman noted that some 250,000 Eastern Europeans and Central Asians were newly infected — double the number just one year earlier. Similarly, Peter Piot, the executive director of the joint UN program on HIV and AIDS (UNAIDS), pointed out, "Because relatively few cases are reported, the number of infected Eastern Europeans and Central Asians is probably four to five times as high as the official figures."

Despite such alarming numbers, the region lags behind the rest of the world in addressing the epidemic. According to Piot, only one head of state in the former Soviet Union, Ukrainian President Leonid Kuchma, has spoken out directly on HIV/AIDS, and few other public figures have been willing to even mention the disease, let alone discuss its realities frankly. In a pointed remark about the epidemic in the region, Piot stated that "few countries are acting vigorously enough to protect sex workers and clients" from HIV even though "it is from the comparatively small pool of sex workers first infected by their clients that HIV steadily enters the larger pool of still-uninfected clients who eventually transmit the virus."

The reasons for the lack of attention are not unknown, but often seem insurmountable. Living standards throughout CEE/fSU plunged in the wake of the collapse of the tightly controlled Soviet-style economies over the past decade. As a result, the quality of the health care systems is woefully substandard, and meager government spending promises few improvements. The palpable lack of optimism about the future among the general population means that few people have the time or energy to focus on public health campaigns or take aggressive measures to address the growing social problems, such as increased drug use, that contribute to HIV infection.

Even though there is neither the will nor the apparent ability in the region to accommodate truly comprehensive anti-HIV programs, policy makers cannot be allowed to make excuses for inaction. Without long-term goals, the tendency to implement weak and ineffective programs will continue. Just as importantly, laying out aggressive action plans should make it more difficult for wealthy nations to shirk their moral responsibilities — clearly one of the main points raised at the conference.

Mark Malloch Brown, administrator of the UN Development Program (UNDP), addressed this issue at UNGASS, noting: "The current spending [on HIV/AIDS] in developing countries is currently less than $2 billion a year. A world that spent an estimated $500 billion to tackle the elusive Y2K bug on our computers must be able to do more to tackle a virus that has already claimed 22 million lives but affected still more through infection, and families brought down by loss of parents, spouses and children."

There are already warning signs that richer countries have not prioritized anti-HIV funding and programs. UN Secretary General Kofi Annan has estimated that the new Global Fund to Fight AIDS, Tuberculosis and Malaria would need between $7 billion and $10 billion a year to fight AIDS alone, and donors have currently pledged little more than $2 billion.

The Realities of the Epidemic in CEE/FSU

For people with HIV/AIDS and their advocates in CEE/fSU, the most heartening aspect of UNGASS was the frank discussion of the realities of the epidemic in the region, a major step forward for government officials who have long refused to acknowledge growing drug use and sex work within their countries' borders. Although some representatives from the 24 countries in the region did not directly mention such issues in their speeches at UNGASS, none of them were able to avoid hearing about them. Those realities were reinforced by the nearly 80 civil society participants from CEE/fSU in attendance; many of them work at NGOs whose anti-HIV work has often been frustrated by government officials opposed to their efforts to develop and implement vital harm reduction programs.

Harm reduction advocates were buoyed by several key points raised openly during UNGASS that may have beneficial results for their work. For one thing, several speakers from the region were clearly aware of the realities of the epidemic.

Alisher Vakhidov, the permanent representative of the Republic of Uzbekistan at the United Nations, noted that "64 percent of the population of the republic are young people in the age group of 15 to 29. They are the ones who are mainly involved in drug use and sex trade. And they are the most susceptible to HIV." He went on to discuss his government's program on Strategic Planning of National Activities against HIV/AIDS for the years 2001-2005. That program commits the government to "develop favorable conditions in politics and legislation for the vulnerable groups of population; to improve informational and educational programs through the use of mass media; and to develop and implement programs for the vulnerable populations."

Other speakers, including those from Belarus, Georgia, Hungary and Lithuania, also focused on drug use as the main HIV transmission route in their countries. Croatia's minister of health, Ana Stavljenic-Rukavina, explicitly mentioned harm reduction programs for injecting drug users (IDUs) as an important element in anti-HIV efforts. Other speakers spoke about the necessity of tackling discrimination and educating young people more fully about safer sex and drug use.

Comments such as those from government representatives in the region helped form the basis of the comprehensive Declaration that emerged from UNGASS. Among other points, the Declaration:

• officially recognizes that the Central and European region has very rapidly rising infection rates;
• notes that stigma, silence, discrimination and denial, as well as lack of confidentiality, undermine all prevention, care and treatment efforts;
  notes that economic, social, political, financial, legal and cultural factors are hampering awareness, education, prevention, care, treatment and support efforts;
• recognizes that access to medication is part of the right of everyone to achieve the highest standard attainable of physical and mental health;
  acknowledges that prevention of HIV infection must be the mainstay of national, regional and international responses to the epidemic;
• recognizes that to achieve the declaration's prevention goals, all countries must continue to emphasize widespread and effective prevention;
• recognizes that effective prevention, care and treatment strategies will require behavioral changes and increased availability of and non-discriminatory access to vaccines, condoms, microbicides, lubricants and sterile injecting equipment;
• recognizes the fundamental importance of strengthening national, regional and subregional capacities to address and effectively combat HIV/AIDS and that this will require increased and sustained human, financial and technical resources through strengthened national action and cooperation and increased regional, subregional and international cooperation;
• affirms that beyond the key role played by communities, strong partnerships among governments, the United Nations system, intergovernmental agencies, people living with HIV/AIDS and vulnerable groups, medical, scientific and educational institutions, NGOs...foundations, community organizations...and traditional leaders are important;
• recognizes that "respect for the rights of people living with HIV/AIDS drives an effective response; and
• acknowledges the particular role and significant contributions of people living with HIV/AIDS, young people and civil society actors in addressing the problem of HIV/AIDS in all its aspects and recognizing that their full involvement and participation in design, planning, implementation and evaluation of programs is crucial to the development of effective responses to the HIV/AIDS epidemic.

The Roles and Responsibilities of NGOs and Civil Society

In general, the Declaration of Commitment reached at UNGASS emphasizes the need for governments to work with civil society and encourages its participation in all aspects of anti-HIV work as they seek to meet the more than 50 targets and commitments in the Declaration. It is not a one-way street, however: NGOs must be proactive as well. In its post-UNGASS advocacy guide, the International Council of AIDS Service Organizations (ICASO) placed the burden on civil society to hold both governments and themselves accountable for implementing the Declaration's provisions:

"...It is not enough to say that governments are responsible for implementing the Declaration of Commitment. Civil society must also participate in this process. We should say to governments that we will share in the ownership of this document providing they involve civil society in a meaningful way in the development and implementation of action plans that will bring life to the commitments contained in the Declaration."

The ICASO guide notes that as a result of the Declaration, civil society participants have a new window through which to boost their advocacy efforts because they can now point to commitments made by governments throughout the region. Suggestions as to how to do this include:

• identifying key government officials and lobbying them as to what the priority commitments should be;
• strengthening relationships with appropriate government agencies;
• initiating regular meetings at which government officials are invited to discuss and, if necessary, defend progress toward meeting the Declaration's goals; and
• developing coalitions with non-HIV/AIDS groups in the region.

For NGOs that focus on harm reduction, there are additional issues to be considered as they monitor governments' anti-HIV responses. What has been done — or planned — to address the specific problems of IDUs and other particularly high-risk populations? Have efforts been made to educate the police and potentially censorious religious groups as to the realities of addiction and risk-taking? Will prominent officials agree to directly discuss drug use, sex work and discrimination and urge fellow citizens to help determine realistic strategies to prevent HIV transmission — and not necessarily insist on restricting access to drugs as the primary response?

These questions point to one major failing of the Declaration, a likely casualty of many participating governments' social conservatism: the fact that the groups most at risk for HIV infection are not named in the document. Civil society must therefore continue to stress exactly who is most at-risk and why in order to maintain appropriate focus. After all, few IDUs and their sex partners, sex workers and their clients, or prisoners have the ability or outlets to make their concerns known to the authorities and the population at large. Visibility is vital, which is why it was so refreshing that some delegations (notably Poland and Ukraine) brought openly HIV positive people to UNGASS. Such gestures cannot be underestimated because they can increase NGOs' standing among officials, boost awareness, decrease discrimination and provide people with HIV the opportunity to advocate on their own behalf.

UNGASS and the Declaration have made it clear that the region's policy makers can no longer ignore the epidemic in their midst. Civil society participants have an opening; it is up to them to seize the opportunity to work with authorities to take realistic and aggressive measures.

The long-range nature and target dates of the Declaration work in civil society's favor as well. Governments have pledged to develop plans and strategies by 2003. It should be fairly easy to analyze and monitor the status of this commitment, especially in light of the fact that the Declaration calls for governments to implement their aggressive anti-HIV programs by 2005. A full eight years from now, in 2010, is the year in which the impact of such policies can expect to be significant if implemented properly and thoroughly. By offering their expertise to government policy makers as partners in their countries' efforts, NGO workers can play an influential role in forcing governments to honor their commitments to these deadlines.

It is a crucial period both for the region and for wealthier nations that have so far failed to be substantial partners in the global response to the HIV epidemic. And now that the harm reduction genie is out of the bottle, excuses about not focusing on such an important strategy are no longer viable.