Mitigating the HIV Epidemic in the Former Soviet Union: Essential Steps for a Comprehensive Response

Mitigating the HIV Epidemic in the Former Soviet Union:

Essential Steps for a Comprehensive Response

The following speech was delivered by Kasia Malinowska-Sempruch, the director of the International Harm Reduction Development Program, at the 9th European AIDS Conference on October 27, 2003.

Distinguished Guests and Esteemed Colleagues,

I am honored to have the opportunity to speak at 9th European AIDS Conference. Coming home to Poland always makes me happy—many thanks to the organizers for this opportunity. My excitement about being here today is magnified by the sight of such a large and committed group of people who are playing a vital role in Europe’s efforts to address the HIV epidemic.

Your presence here in Warsaw is a recognition of the realities of today’s epidemic. You and your colleagues have had remarkable success in holding down transmission rates in Western Europe and in offering hope and care to those living with HIV. Yet that success represents merely a small and possibly temporary calm at the edges of a terrible storm sweeping across this region.

More than a decade after the Soviet empire’s collapse, it is increasingly clear that great divisions exist across Europe. HIV infection rates are stable or falling on one side, yet are skyrocketing on the other. People in countries to the east of this divide are much more vulnerable to persecution, harm, and neglect—conditions that lead to fear and immobility as HIV takes root. 

I urge you to help reverse this trend. We can no longer stand aside as HIV and AIDS move swiftly through the former Soviet bloc, challenging all the positive developments that have occurred over the past 15 years. It is no secret that we are poorer than Western Europe. And that our democracies are newer and often shakier. But it still seems as though our looming drug use and HIV epidemics remain secrets, both because we have yet to acknowledge them fully and because influential people in the West are not calling attention to them.

HIV is no longer simply a threat to this region. It’s already arrived. At least two million people in Central and Eastern Europe and the former Soviet Union are currently infected, and transmission rates have been among the world’s fastest in Russia and Ukraine over the past few years. Most experts agree that infection rates are poised to surge in Central Asia and the Caucasus sooner rather than later.

 It’s not enough to recognize that we’re already in trouble, of course. What’s also vital for a useful response is an understanding of how this region’s HIV epidemic differs from those entrenched in sub-Saharan Africa, the United States, South East Asia and elsewhere. An overwhelming majority of all infections in the former Soviet Union to date are among injecting drug users, a far higher percentage than just about anywhere else.  This requires appropriate responses in the area of prevention and also HIV care. 

Observers often claim that HIV prevalence numbers indicate the epidemic in the most affected countries is now spreading to the general population.  A close look at most data reveals that we are indeed entering a stage in which sexual partners of drug users are rapidly becoming infected. It is important to recognize this trend because addressing it requires very specific measures—measures that continue to target drug users and their partners with sexual prevention efforts. We must not miss this opportunity to prevent HIV transmission among the most vulnerable groups by scaling up services for them quickly and effectively.  What we have instead is widespread denial and official paralysis. We have insufficient financial and technical assistance from countries that have extensive experience dealing with HIV.  And as important and difficult as prevention efforts are, we now also must focus as well on access to HIV care. With an estimated 2 million infections in the region, there are plenty of people in need of treatment already.  And this number continues to increase sharply each month.

Allow me to spend a few minutes talking about HIV care.  Two years ago, the Eastern European Harm Reduction network published research on access to care for drug users.  This data is terribly important because those in most need of care in our region are drug users.  The results of this research are extremely worrisome. They clearly show that medical establishments do not provide even basic care to drug users, with the exception of occasional drug treatment.  It shows that drug users who turn for help to doctors often have doors slammed in their face. It shows 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.

I’ve had the honor of sitting on the Technical Review Panel for the Global Fund for the first three rounds of reviews. The number of proposals from our region asking for treatment money has made me very happy. At the same time, however, I have an ongoing worry about how treatment will be distributed and whether those who need it most will in fact get it.

We all have heard offensive assumptions and stereotypes used to justify denial of HIV treatment. 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 this region must change the condescending way they treat drug users—as though they are incapable of making informed decisions about their health. Using alleged non-compliance as a reason for denial of treatment is unfair and unproductive and it ignores the problem.  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 treatment regimens can’t be followed.  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.  Our work in the region has shown 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.

I assume that most of you will agree that working on HIV issues requires from us creativity, fierce advocacy and constant questioning of the status quo. I believe that we are at a particularly critical point where such passion and experience are needed more than ever. This is not to say that we do not have our examples of excellent delivery of care and advocacy for patients. We have infectious disease doctors who advocate for methadone to stabilize their patients. We have AIDS doctors who try to offer whatever care they can in needle-exchange buses in minus 30-degree weather. But we also have Russia, with three million drug users and an estimated one million people infected with HIV—and the option  utilize drug replacement therapy does not exist because methadone is classified like heroin as an illegal substance that has no medical use. Your voices are urgently needed at the level of policy discussion, medical practice, and patient advocacy. You are uniquely positioned to work with your counterparts in the East to save the lives of those most marginalized and least likely to receive care. I ask you to visit clinics and harm reduction projects in Russia, in Kyrgyzstan, in Georgia, and see for yourself the difficulties these brave men and women face every day as they struggle against institutionalized discrimination and confusion.

Finally, I would like to mention another grave social problem with direct implications on HIV infection rates—the very conservative drug polices that have been adopted across our region. While Western Europe is looking for ways to realistically address its drug problems by introducing injection rooms, decriminalizing personal possession, and piloting heroin prescription, we are locking everyone up.  Three years ago Poland joined Russia, Ukraine and other countries of the region and criminalized personal possession.  Yesterday, on my way to Poland, I read about a study of Polish prisons showing that 22.5 percent of all inmates use drugs while in prison.  Russian prisons hold 37,000 HIV positive people, most for offences related to drug use.

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, shame and silence breeds HIV and offers further proof that drug policies are intimately connected to AIDS policies. One cannot have a serious discussion about HIV prevention among groups that are prosecuted, harassed by the police, and humiliated in work camps in Central Asia.  Drug addiction is a recognized medical condition. How can we, citizens of democratic states, accept imprisoning people for their medical conditions? 

In summary, the three necessary components for an effective response to HIV in our region are:

·        one, scaled-up prevention efforts for vulnerable populations, including drug users, sex workers, and street kids;

·        two, HIV care for everyone who needs it, with special attention paid to marginalized groups; and

·        three, a reassessment of drug policies with the goal of bringing them in line with European norms and trends.

Again, I would like to thank the organizers for bringing this conference to Eastern Europe. Engaging Eastern European countries and the Newly Independent States in European efforts is crucial if we are serious about saving lives.

Thank you.