At the "International Conference on AIDS, Cancer and Related Problems," held October 6-8, 2003, in St. Petersburg, Russia, TPAA Vice President for Programs Stephen Massey presented the Final Report of the U.S.-Russia Working Group against HIV/AIDS and highlighted its key conclusions and recommendations.

10.07.2003

St. Petersburg, Russia

As delivered

I would like to thank Dr. Kozlov and the other organizers of this conference for their invitation to speak to you today on behalf of my colleagues at Transatlantic Partners Against AIDS and the U.S.-Russia Working Group Against HIV/AIDS.

Transatlantic Partners Against AIDS (TPAA) is a Russian-American, non-governmental organization that works to effect policy outcomes and undertake related initiatives that will empower the countries of Eurasia to be more effective in the fight against AIDS. We strive to mobilize leaders from government, business, labor and civil society in the fight against AIDS, and impress upon them that HIV/AIDS is not only a public health issue, but represents a grave security, political, and economic threat to Russia and its region. We work not just towards widespread acknowledgement of the problem, but also seek to provide the tools and policy mechanisms that will allow these leaders to combat the epidemic.

TPAA was created in July 2003 by members of the EastWest Institute’s U.S.-Russia Working Group Against HIV/AIDS, some of whom I am pleased to see present here today. The Working Group was formed early this year to examine Russia’s HIV/AIDS epidemic, build networks among Russians and Americans who are engaged in the battle against AIDS, and strengthen political will in Russia to address the threat of HIV/AIDS in this region. In total, over 180 participants attended the Working Group’s two meetings in May and June of this year, including Russian Federation Council Speaker Sergei Mironov and U.S. Secretary of State Colin Powell.

The Working Group affirmed that there remains enormous untapped potential for Russia, Ukraine, and neighboring states to work cooperatively with European and North American partners in the global fight against AIDS. The Working Group’s first report, which I have distributed here today, was written primarily by Russian members of the Working Group, and includes a candid assessment of the current state of the HIV epidemic in Russia with concrete recommendations for Russian policymakers and their international partners. This report has been profiled on Russian Channel One News, CNN, the Financial Times, Nezavisimaya Gazeta, and several other Russian newspapers. In the past two weeks, we’ve seen over 40,000 visitors to our website, due in large part to the interest generated by this report.

This afternoon, I’d like to share with you some of the key conclusions of this report and offer several recommendations for immediate action. I will focus on four priority topics: (1) legislation and funding; (2) the role of civil society; (3) business and labor issues; and, (4) treatment and care for people living with HIV/AIDS.

Political Awareness, Legislation and Funding

Our U.S.-Russia Working Group affirmed that many Russians continue to view HIV as a disease that only afflicts marginalized groups of injecting drug users, sex workers, prisoners and men who have sex with men. Because the overwhelming majority of the population is convinced that this problem is confined exclusively to marginalized groups, Russian politicians and government officials have been reluctant to address the problem with concrete action and sufficient resources. The instinct in Russia, as elsewhere, has been to rely on restrictive policies that aim to detect and contain HIV within these marginalized populations. In Russia, this has included the incarceration of drug users without access to treatment and support; compulsory testing on the basis of so-called risk group affiliation; restrictions on employment, marriage, or sexual activity based on HIV status; and compulsory notification of partners.

Russia’s 1995 Federal Law on AIDS is this country’s most important piece of HIV/AIDS legislation. This law is one of the most progressive and comprehensive pieces of HIV legislation in the world—certainly far more comprehensive than any HIV/AIDS legislation in the United States. The law addresses a wide range of issues related to HIV testing, confidentiality, anti-discrimination, and the universal right to treatment.

Despite the existence of this model piece of federal legislation, there is widespread evidence that the human rights guarantees contained in this law are regularly violated. There are frequent reports that people with HIV in Russia are denied that most basic rights to privacy, health care, education and work. Access to treatment for people with HIV, both for opportunistic infections and for HIV itself, is available only on a very limited basis. Russian health personnel outside of the country’s AIDS Centers regularly refuse to provide healthcare services to HIV-positive citizens. And, employers regularly dismiss employees based on HIV status. Allow me to reiterate—these abuses are not the byproduct of inadequate legislation; rather, they are the result of inadequate implementation of Russia’s Federal AIDS Law. Thus far, little has been done to address this problem.

If Russia is to be successful in stemming its HIV epidemic, discrimination and stigmatization of people living with HIV must cease. This shift in mentality and behavior must begin among top political figures, respected business leaders, and popular figures in society. This shift in thinking is difficult, even for political leaders in my own country. However, from our vantage point and based on the findings in this report, the magnitude and potential growth of Russia’s HIV epidemic make the disease an undeniable threat to national security, economic growth, and international relations.

For most Russian policymakers, the economic consequences of HIV/AIDS are the most compelling. No matter how the epidemic plays out, HIV will negatively impact Russia’s economy. Experience elsewhere has shown that an unchecked HIV epidemic reduces portfolio and foreign direct investments, impedes education and services markets, causes high turnover and lower productivity in the workplace, and burdens employers with the cost of supporting infected employees. HIV will also limit Russia’s economic prospects by requiring the diversion of resources to provide medication and care for the sick and to implement comprehensive prevention programs. These resources could, in the absence of a growing epidemic that requires massive funds for immediate consumption, be invested in fueling economic growth and increasing Russia’s savings rate.

According to the World Bank, if current HIV transmission trends persist, Russia’s GDP in 2010 could be 4 percent smaller than it would have been in the virus’ absence. That GDP reduction could be as high as 10 percent by 2025, due exclusively to the impact of HIV. As Russia races to catch up to major economies in Europe and North America, even minor reductions in Russia’s productivity and rates of growth would significant reduce the ability of the Russian economy to compete with those of other industrial nations.

Most experts agree that the scale of the epidemic in Russia has already far outgrown the scope of existing government programs. Russia’s 2003 federal AIDS budget allocates 122 million rubles ($3.8 million) for all federally-funded HIV/AIDS prevention and treatment programs, which amounts to less than $2 per estimated case of infection. By comparison, Brazil—a country of roughly the same size, standard of living, and estimated HIV prevalence rate—spends well over $600 million per year of its own federal resources to combat HIV/AIDS domestically. Brazil also receives tens of millions of dollars each year from international sources, and donates several million dollars to countries on its border to help them deal with their own HIV problems. International experts estimate that public and private investments in HIV/AIDS prevention and treatment in Brazil have saved well over 600,000 lives.

Just last month, the government of Russia announced a doubling of its federal HIV/AIDS spending through 2006. Although this is a step in the right direction, it is crucial to recognize that even the short-term costs for prevention, treatment and care far exceed the newly proposed budget levels. To meet the growing needs of treatment and prevention facing the Russian Federation, serious additional investments by the Russian federal government are urgently required.

Civil Society

I’ve spoken about some of the policy and funding challenges; allow me now to address some of the issues facing Russia’s civil society. Over the past decade, Russian civil society organizations have emerged as an active group in the fight against HIV/AIDS. Over 100 non-governmental organizations (NGOs) currently operate HIV/AIDS programs and activities in Russia, mostly focusing on prevention among high-risk groups and advocacy for the rights of people living with AIDS. However, shortage of funds, lack of experience, and an unfavorable legislative environment remain fundamental obstacles for most NGOs. There remains great potential for partnerships between NGOs and government structures, as well as between Russian corporations and their civil society counterparts. Civil society groups are often best placed to deal directly with those at highest risk. Partnerships with these organizations can be leveraged to develop and implement local HIV/AIDS awareness campaigns, prevention initiatives, and support services for people living with the virus.

At present, the work of Russian NGOs is supported almost exclusively by multilateral agencies and foreign bilateral donors, many of whom are preparing to reduce their assistance to Russia in coming years as Russia “graduates” from development aid. The Global Fund to Fight AIDS, Tuberculosis, and Malaria represents another potentially significant opportunity for Russia to expand the scope and depth of its HIV/AIDS activities. However, Russia remains the only country in the former Soviet Union that has not successfully applied for assistance from the Global Fund.

It is also important to recognize that Russia has a significant federal government surplus this year, and the government has found resources for other priority initiatives. We believe that the Russian government must demonstrate its commitment to this issue by spending its own resources to effectively combat the epidemic and care for those already infected. Foreign assistance is not a substitute for the Russian government’s own investments to combat AIDS.

Business and Labor

Third, I’d like to highlight the enormous untapped potential of Russia’s business and labor communities as allies in the fight against AIDS. International experience has shown that business and labor leaders can initiate effective HIV education campaigns that help people stay healthy, protect the rights of all employees (including those already infected), and ensure that business productivity is not undermined by the impact of AIDS. Businesses and professional organizations are uniquely positioned to play a key role in increasing public awareness of HIV in the workplace and surrounding communities, and can be leveraged to help advocate for policy changes at the federal and regional levels related to HIV/AIDS.

Russia’s business and labor communities are beginning to realize the integral role they can play in the fight against AIDS. Just two weeks ago, Transatlantic Partners Against AIDS convened over 50 corporate and labor leaders from Russia and the United States to discuss the surging HIV epidemic in Russia and identify the specific ways in which these leaders can actively engage to address the crisis. And, going forward, we intend to help build corporate and labor leadership on this issue in Russia by providing tools and mechanisms for employers and employees to integrate HIV prevention education and non-discrimination policies in the workplace.

Access to Treatment

Finally, allow me to address the issue of access to treatment for HIV-infected persons, which is perhaps the most formidable AIDS-related policy challenge facing the Russian government. Importantly, Russia’s 1995 Federal AIDS Law guarantees free access to treatment and related healthcare support for all Russian citizens infected with HIV. This legislation was crafted, however, when fewer than 1,000 citizens were registered as HIV-positive with the authorities. Since the HIV epidemic began to surge in 1997, some 250,000 new patients have been officially diagnosed with the virus. Yet, current resources are sufficient to cover the cost of highly active antiretroviral therapy (HAART) for fewer than 2,000 patients. Although most of the key ARV drugs have been registered in Russia, they are not available to most of the people who need them.

Many of Russia’s AIDS Centers do not have the infrastructure or testing equipment required to effectively monitor AIDS treatment, and even fewer have the psychological or support services to complement drug therapy. Most patients are unaware of their rights and responsibilities related to HIV treatment. Even if treatment and support were readily available for all Russians who require it, many patients do not know enough about their condition to request treatment or seek counseling.

Over the next several years, the demand for treatment will increase more than one-hundred fold as most of the quarter-million HIV-infected individual currently registered with the authorities become ill and require treatment, care and support. The likely demand is even greater when the hundreds of thousands of HIV-infected Russians who are not officially diagnosed or who do not know their status are factored into the equation.

At the most basic and human level, reliable access to treatment and support is necessary to help keep HIV-infected people alive. Treatment access has also been shown to have a major beneficial impact on prevention efforts because at-risk individuals have a greater incentive to get tested and know their HIV status if treatment that can prolong their lives is readily available. Whether they test positive or negative, people who know their status are far more likely to change behavior that puts them and others at risk.

Based on current prices and official rates of infection, Russia will have to spend over 36 billion rubles ($1.2 billion) per year beginning in 2008 just on medication to treat eligible HIV/AIDS patients. Even if Russia can lower the cost of treatment to $2,000 per patient per year (as in Ukraine), it will still cost 15.2 billion rubles ($500 million) per year—a sum larger than the entire budget of the Russian Ministry of Health for treatment and prevention of all infectious diseases. If treatment access does not improve, experts estimate that mortality rates for AIDS in Russia will increase from 500 deaths per month by 200 to an optimistic scenario of 21,000 deaths per month by 2020.

Window of Opportunity

Indeed, Russia faces serious policy challenges as it responds to its surging HIV/AIDS epidemic. However, Russia also possesses vast resources and scientific expertise, as well as the experience and best practices from other parts of the world, to battle its epidemic. More than anything, Russia must now mobilize the political will necessary to make the fight against AIDS a top government priority.

In his May 2003 address to the Federal Assembly, Russian President Vladimir Putin declared that HIV/AIDS represents a threat to Russia’s national security. This declaration marked an important milestone toward creating the political environment necessary to confront the epidemic, and indicated that Russia’s policymakers now recognize the severity of the crisis. Just two weeks ago, President Putin mentioned AIDS again in his address to the United Nations General Assembly—an unprecedented act by a Russian head of state. And, on September 26, 2003, Presidents George W. Bush and Vladimir Putin discussed HIV/AIDS in the context of Russian-American bilateral relations during their Summit meeting at Camp David. The two presidents have committed to expanding bilateral cooperation in the fight against AIDS, which will benefit the people of Russia and the United States, as well as the broader international community.

The recent steps by President Putin demonstrate the importance of this epidemic to all Russian leadership. These steps have created a window of opportunity to urgently implement national policies and programs to stem the spread of HIV and care for those already infected. Experience elsewhere has shown conclusively that without political leadership from the very top, a society’s response to the epidemic will be limited and ineffective. It’s now time for senior leaders in the Presidential Administration, the Russian State Duma, all federal ministries, and regional and local governments, to take swift and decisive action.

Russia can and should also play a leadership role in combating HIV/AIDS in its region. Infection rates in Ukraine are comparable with those in Russia. Estonia, Latvia, and Lithuania—three European Union accession states—already harbor some of the highest rates of HIV infection in Europe. And HIV is quickly emerging as a serious health risk throughout Central Asia, where injecting drug use is rising sharply. Russia can help lead an aggressive regional response to HIV within the Commonwealth of Independent States, thereby helping to reduce the spread of HIV/AIDS across borders and bolstering regional stability and economic growth. Russia can also demonstrate to the broader international community its ability to lead on a complex issue of global importance.

Conclusions

Strong partnership and coordination between Russia and its international partners at this relatively early stage in its HIV epidemic are essential. TPAA is committed to creating a truly transatlantic partnership that will help our countries more effectively stem the rapid and devastating spread of HIV/AIDS. Let me quickly review some of our activities in Russia:

1. In early 2004, TPAA will help launch a Russian Parliamentary Working Group on AIDS, to mobilize a high-level coalition of parliamentarians to focus on HIV policy issues and federal funding. I’m pleased that several members of the State Duma and Federation Council—including Mikhail Margelov, Mikhail Zadornov, and Alexander Barannikov—have agreed to participate and actively lead this initiative.
2. TPAA has launched a U.S.-Russia Business and Labor Task Force on AIDS to mobilize corporate and union leaders from our two countries to implement workplace education and non-discrimination programs.
3. TPAA is working with major media companies in the U.S. and Russia to create opportunities for partnership between international media partners. Our goal is to help mobilize and implement mass media education and awareness campaigns that will help spread prevention messages and reduce stigma.

 

On behalf of TPAA, thank you for allowing me to participate in this event. This conference and others like it are important mechanisms by which to mobilize individuals and organizations in the fight against AIDS, share experiences and best practices, and help coordinate our work. I hope you find our report useful in your own efforts. And, I sincerely hope you will be in touch with us. Thank you for your attention.