The following is a transcript of the speech delivered by Kasia Malinowska-Sempruch, director of OSI's International Harm Reduction Development Program, on July 9, 2002 at the 14th International AIDS Conference in Barcelona, Spain.
Distinguished Guests and Esteemed Colleagues,
I am honored to be given the opportunity to speak at the first ever plenary presentation on Eastern Europe and the former Soviet Union. Those of us who have worked in the area of HIV in this region have spent well over 10 years talking about the social, economic, and human factors that make our countries susceptible to HIV, advocating action. Now, in 2002, we no longer speak of what may be: HIV and AIDS have arrived and as everywhere else the virus is causing devastation.
For three years in a row, UNAIDS has reported that HIV is growing faster in Eastern Europe and the former Soviet Union than anywhere in the world. Today, there are almost 200,000 officially registered HIV infections in Russia. The total number of people living with HIV is estimated to be much higher—at least one million—and 90 percent of them are injecting drug users. The situation is equally dire in neighboring Ukraine, where close to 1 percent of the population is estimated to have HIV; again, the majority of them are drug users.
As a native of Poland, not only am I terrified at the prospect of the rapidly growing HIV epidemic, but I'm frustrated and angry as well. The world celebrated with us when the Berlin Wall fell, and then left us alone to deal with the consequences. Although many countries of our region embraced democracy over the past decade, the promised economic benefits have yet to arrive. We are richer in terms of human rights and some essential personal freedoms, but we are poorer in many other ways.
From the Czech Republic to Uzbekistan, public health systems are crumbling as the region's economies continue to struggle. Absolute poverty levels are up while living standards and life expectancies are falling. Per capita gross domestic product in Russia is less than $5,000 a year, lower than in countries such as Brazil and Thailand that have long been considered less developed. As bad as the economic systems are in Russia, they are even worse in Ukraine and Central Asia, where a growing number of people are forced to get by on less than $2 a day. In Central Asia, some women are trafficking drugs to buy schoolbooks and shoes for their children. The sex work industry is rapidly expanding throughout the region.
I would like to hope that things will get better before they get worse. But now our countries are facing two linked health crises that threaten to dwarf all other issues: soaring injecting drug use and HIV infections. If the world is unable or unwilling to turn its attention to this region and offer help in dealing with this looming disaster, the consequences will be horrific.
You've heard this all before of course—think back to over a decade ago when activists first raised the alarm about the crushing AIDS epidemic sweeping much of Africa and large parts of Asia. For a variety of reasons, governments, international organizations, and pharmaceutical companies preferred to ignore the imminent African AIDS epidemic even after the first signs of the catastrophe appeared. Before long it was impossible to ignore—the continent had already buried millions of people and tens of millions more had been infected. Not only is this an economic and social disaster, but it is a moral one as well. No matter how much attention donor nations give to Africa now, it will never be forgotten that the world fell brutally short of meeting its humane obligations. As we respond to the African epidemic and consider strategies for Eastern Europe and the former Soviet Union, we have an opportunity to apply lessons learned so tragically in other parts of the world.
Injecting Drug Use Fuels the Epidemic
Unlike in most other regions, HIV in Eastern Europe and Central Asia is spreading primarily through injecting drug use. Economic despair, social dislocation, and easy access to heroin and other opiates have all contributed to an explosion of drug use. Already on the margins of society, injecting drug users receive little or no sympathy from the general population. There remains an illusion that drug users are somehow separate and isolated and that illness and death among them has no impact on the fabric of society overall.
We've heard reports of parents in Central Asia watching their children die of overdoses, so afraid of police harassment of the entire family that they will not bring them to a hospital. This type of fear and silence—which authorities have so far failed to adequately counter—breeds HIV and offers further proof that drug policies are intimately connected to AIDS policies.
Often, in countries that are experiencing a rapid increase of drug use, the reflex reaction is to become tougher on drug users. Locking people up in prisons for their drug use is not a solution, however. It's an intervention that only makes things worse by driving users underground and making them less likely to access what few services do exist for them.
The United States, with its failed war on drugs, offers an example of the futility of focusing on incarceration as a strategy to address drug use. Addiction rates there have not gone down despite aggressive enforcement of zero-tolerance laws that have filled the nation's prisons with people caught using even small amounts of drugs. Instead of allocating resources toward harm reduction and drug treatment, American policy makers spend billions of dollars on new prisons, making the U.S. the world's leading incarcerator.
By favoring confinement over treatment in Eastern Europe and the former Soviet Union, authorities are condemning drug users to overcrowded prisons where needles are shared and HIV rates are surging at an even faster rate than among the population at large. In Russia alone, more than 33,000 prisoners have tested positive.
A large percentage of these prisoners will be infected with tuberculosis (TB), which itself has reached epidemic levels in the former Soviet Union. TB is now the most common killer of HIV-infected people in the region, and in prisons alone more than 30 percent of those with TB have a multi-drug-resistant strain of the disease. Prison sentences, even for minor offenses, now often become death sentences.
A New Way of Thinking: Harm Reduction Policies
Halting the spread of HIV among drug users requires entirely new ways of thinking. National and local governments must implement flexible and caring health policies that focus on helping drug users, not punishing them. Along with the governmental response—and perhaps even more importantly—we need to look at our own national prejudices, our own professional stereotypes, and our own personal judgments that stand in the way of providing those in need with immediate assistance.
We know what works. At the Open Society Institute, we strongly believe in the concept of harm reduction as the most humane and realistic way to stem the spread of HIV among drug users. By this we mean meeting drug users on their own ground, providing nonjudgmental access to ways they can reduce the risk that they will contract HIV or other serious conditions such as hepatitis.
One key element of most harm reduction programs is needle exchange. Hundreds of studies around the world have shown that providing injecting drug users with access to clean needles greatly reduces needle-sharing and thus HIV infection. The World Health Organization, the American Medical Association, UNAIDS, and many other major organizations consider provision of clean syringes to be an effective and necessary method of preventing HIV transmission among injecting drug users.
Treatment programs that offer methadone and other substitution therapies are another vital part of harm reduction efforts. Unfortunately, rigid and repressive drug policies in many countries mean that such programs are few and far between.
Even so, harm reduction is not an unknown concept in Eastern Europe and the former Soviet Union. Small NGOs have set up shop to provide needle exchanges in nearly every country, with or without the acceptance or support of governments. There are committed people in the region who have long dared to defy conventional wisdom and treat drug users as human beings deserving of as much care, education, and assistance as all other members of society.
In Poland, there's a doctor who early on spoke about the need for methadone maintenance programs to be implemented as a frontline approach to the drug-use epidemic—and most public health officials in my country now accept such programs as vital. In Bulgaria, there's a small group of volunteers who drive a battered bus into isolated Roma communities and offer clean needles to injecting drug users who have faced more discrimination and stigma than most of us can possibly imagine. In Ukrainian cities there are former drug users who risk entrapment and arrest by going directly to shooting galleries and handing out information and offers of support to homeless youths who are desperate and malnourished. In St. Petersburg, elderly women can get their blood pressure checked in the mobile clinic as drug users exchange needles. There are mayors and public health officials across the region who do their best to provide free space for drop-in centers, and there are physicians and nurses who take off their white coats and transform into outreach workers.
Such local efforts are the cornerstone on which harm reduction should be built. But these and other harm reduction services that do exist have limited resources and risk being swamped as the number of clients—and those infected with HIV—continue to climb.
Intervention Based on Needle Exchange
Needle exchange is easy from an intervention standpoint. Certainly it's easier to offer effective prevention in the area of injecting drug use than sexual health, for example. As we know from years of experience on behavior change in the area of sexual health, there is a long list of reasons why people do not want to use condoms: "I don't need to with my wife"; "He'll think I'm a slut"; "They reduce sensation"; "It's against my religion"; and "Stopping to put them on breaks the mood." are among the most common. The reasons go on.
Drug users would make a very different list of reasons for not using clean needles. These would have little to do with individual choice and might include: "Syringes are not available"; "I'm afraid of being stopped by the police outside of the pharmacy"; and "Walking into a needle exchange may cause my children to be taken away." When I visit programs that we support throughout the region, I am always amazed that people are in fact willing and motivated to travel, often a few times a week, in minus-20-degree weather, across town for clean needles, for a warm cup of tea, or for a visit with a nurse who can look at an abscess without delivering a sermon.
If a harm reduction program is well-designed, if it's user friendly, well located, and committed, it can reach large numbers of people. And there is no reason for people to not use clean needles. If every drug user today were provided with clean syringes and needles, the overwhelming majority would use them.
Harm reduction makes a huge difference and saves countless lives, but we need to go even further. Along with HIV prevention we must offer hope to those who are already infected, including drug users, so they feel enlisted in preventive efforts and are in fact, active partners in keeping others free of infection. This is much harder than it should be because of lingering stigma and shame. The former Soviet Union is a place where narcologists were required by law to report their patients to the police. This is no longer necessary under current law, but in many countries, since we are creatures of habit, this type of dialogue between police and physicians continues.
In order for effective HIV prevention to happen, significant changes in the way we think of those living with HIV must take place. First, people have to know that they are infected. In order for them to know, they need to feel safe and respected. And so the entire system of HIV testing in the region, still based on the Soviet model, needs to be revamped.
Treatment for Those Living with HIV
The key is hope. For those already living with HIV, hope is imperative—it's our only ally in halting the epidemic. Social and medical services need to be offered to everyone infected with HIV. I have no illusions that people living in the former Soviet Union will have easy access to sophisticated antiretroviral combinations in the near term. But there is a lot that can be done now, such as providing TB treatment and prophylaxis of opportunistic infections. The fact that in many places this is not being done fuels the rapidly increasing number of infected.
A question often asked in the region is, "Why should I get tested? I have everything to lose and nothing to gain." This is especially true for a person who uses drugs in parts of the former Soviet Union. We therefore need to help provide a coherent answer to this question before expecting users to seek out information on their own.
It goes without saying that there are few, if any, HIV treatment options available. HIV-infected drug users who turn to doctors for help often have doors slammed in their face. A survey by the Central and Eastern European Harm Reduction Network, publicized last night, found that the region's drug users are often placed last on the list of those in line for antiretrovirals, are required to stop methadone in order to gain access to HIV treatment, or are denied antiretrovirals altogether.
We all have heard offensive assumptions and stereotypes used to justify denial of HIV treatment to other groups before. We've heard that gay men are self-destructive and not interested in taking care of their health. We've heard that Africans cannot tell time and are therefore unable to comply with complicated regimens. Now we hear that drug users, by virtue of being drug users, are non-compliant and not worth treating.
AIDS service providers and policy makers all over the world must change the condescending way they treat drug users—as though they are incapable of making informed decisions about their health. Using non-compliance as a reason for denial of treatment is unfair and unproductive and it ignores the problem. A friend recently reminded me that one thing that drug users know how to do well is to take drugs.
The non-compliance argument must be considered in light of the interventions being offered. If providers don't offer treatment in a way that recognizes the realities of drug users lives, then it's hardly surprising that the treatment can't be followed. My organization's experience in the region shows that many users want help to stop injecting, and it's unethical that there are few services such as methadone maintenance to help them in this difficult effort.
If drug users are denied access to methadone or have to wait for months to get accepted in methadone programs, it is the failure of the system that promotes non-compliance. Most of the clinics I visited throughout the region are open from 8 a.m. to 3 p.m. and are quite rigid. I tried to pick up a prescription for myself from one of them a few months ago and missed the doctor who left at 3 p.m. and a social worker who was gone 10 minutes later. I was thrilled to hear of an HIV treatment clinic in Paris open until midnight. I am sure the number of missed appointments in Warsaw or Kiev and Paris are significantly different.
Our work in the region has shown us that drug users, with appropriate support, are as likely to be compliant as any other person with HIV. Many of them come to needle-exchange sites or for their methadone day after day, regardless of how weak they feel or what transportation obstacles they face.
It's not a question of not having enough resources and know-how. Russians have orbited the moon and built tens of thousands of nuclear warheads. If they could accomplish these two expensive and complex tasks, they have the infrastructure to produce generic antiretrovirals that are needed right now. If 200,000 infections within three years doesn't constitute a public health emergency and prompt the development of an aggressive domestic treatment plan, I don't know what would.
Making the Difficult Decisions Now
There are of course no easy solutions to the AIDS epidemic in Eastern Europe and the former Soviet Union—or in any other region of the world. But that doesn't mean people in the region or elsewhere can allow themselves to shy away from making difficult decisions—financially, culturally, or morally—about how to address it. Violence at the hands of police, denial of public services, imprisonment that destroys health and breaks the spirit, so-called "drug treatment" that humiliates clients and their families—all of these human rights abuses experienced by drug users not only make for a repressive society but also fuel the HIV epidemic.
My father was sentenced to life in prison at age 18 for political activity. He spent 12 years in prison, and died before Poland became a truly independent country again in the late 80s. There are hundreds of thousands of men and women who, like my father, sacrificed their lives opposing communism. None of them did that to now watch their children, or their children's children, or their neighbor's children, be locked up in prison for drug use, or die of drug overdose or AIDS.
Let me state it simply: Repressive drug policies fuel the HIV epidemic. Needle exchange and substitution therapy save lives. Drug users care about their health and must be offered HIV treatment.
Finally, let me thank those who are my greatest inspiration—people who were willing to put their professional lives on the line early on and start delivering much needed services to drug users. Those of you who have openly advocated for changes in drug policies allowing for harm reduction to become a reality. Your work in Poland, in Russia, in Ukraine, in Kyrgyzstan, in Moldova, in Bulgaria, in Lithuania, in Tajikistan, in Kazakhstan, and in every other country in the region has been nothing short of a miracle. It's been a privilege working with you all and I thank you. Your concern and care are what will ultimately turn the tide.