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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

HIV Erupts in Russia

By Anne-christine d'Adesky

DEC. 15, 2003. On a typically damp, gray May morning, the neighborhood of Krasnoselski in St. Petersburg looks gloomy and desolate. Just off the highway nearby stand several massive, unadorned low-income apartment complexes, modern-day sentinels towering above a barren, garbage-strewn urban landscape.

The air coming off the Baltic Sea is frigid and few residents loiter outdoors. But several people huddle outside a RV parked on a side road, smoking and chatting, before stepping back inside.

The RV is a mobile clinic that belongs to Humanitarian Action, a new nonprofit organization affiliated with the French humanitarian agency Médecins du Monde (Doctors of the World), an offshoot of the better-known Médecins sans Frontières (MSF; Doctors Without Borders).

It parks here every afternoon, at one of two mobile needle exchange sites that are viewed as the frontlines of Russia's battle against AIDS. A short time after its arrival, people quietly begin slipping out of the surrounding buildings and make their way over.

Inside, space is so cramped that counselors and nurses must shuffle their legs to allow others to come and go. Most stop at a small window where, after giving their first names only, they hand over used syringes in exchange for fresh ones. Over 230,000 syringes are given out a year by the program, and 98 percent are traded for used ones.

The program is one of 43 harm reduction programs in Russia and the other eleven former Soviet-bloc countries of the Commonwealth of Independent States (CIS). It is backed mostly by money from the US-based Soros Foundation and its Open Society Institute. The AIDS Foundation East-West (AFEW), a large organization that grew out of MSF-Holland's projects in the CIS region, sponsors their work.

A Bridge of Life
Inside the trailer, new clients step further back for an intake checkup by a nurse or doctor. Then they receive counseling and testing for HIV, tuberculosis (TB) and hepatitis. Many clients have all three.

They leave with referrals for follow-up tests and care at the city's AIDS program or the specialty AIDS ward at Botkin hospital. Some are referred to TB hospitals for X-rays and treatment or to STD clinics for gynecological and obstetrical services.

More and younger clients are getting pregnant, and few have access to prenatal care. Short of being a full-service medical provider, the program provides a bridge between groups at high-risk for HIV and Russia's sprawling public health system.

"We are a syringe-exchange point, but we noticed the need for care and treatment is very great in this population," explained Alexander Tsekhanovitch, who heads the mobile program.

"We feel that our program is not a polyclinic or an ambulance-on-wheels. It is a step between real life or the street and the health services of the city. We put them in touch — patients and doctors. Before we started here, there was no one connection between official services and these vulnerable groups. At the same time," he conceded, "what we are doing is very limited."

Many clients live on the street and need an array of services: food, jobs, housing. At the top of the list is drug addiction treatment, which is seriously lacking in Russia. Methadone use is outlawed and there are few rehab programs.

Most clients shoot heroin; many are hardcore addicts. Like sex workers, they tend to avoid anything official, including city healthcare services, fearing arrest or discrimination — for good reason, Tsekhanovitch reported.

"The general attitude toward drug users is very negative," he said. "The basic policy has been to lock them up. It is the same with prostitutes. Now you are adding HIV into the mix. I hate to say this, but many people would be just as happy to see them all die."

Doomsday Coming True
Harm reduction projects were just getting off the ground in 1999, a turning point in the epidemic, say health officials. Since that year, statistics show it has exploded at a rate that these officials call an E-curve, with annual new infections more than doubling the entire caseload of the previous period.

Up until now, the bulk of those affected have been drug addicts and sex workers who typically turn to prostitution to support their own drug habit. In this huge country of 143 million people, two million people now use drugs. Many have landed in prison, where HIV testing is mandatory.

Today, 37,000 of Russia's nearly 900,000 prisoners have HIV. Many are released with new infections of drug-resistant TB and hepatitis, crises that shadow the AIDS problem. Surveys have found that sex and drug use are common in prison while medical treatment is limited outside pilot projects run in four regions by AFEW and its allies.

Over the past year, Russian government warnings have started to match doomsday forecasts by AIDS groups that describe the epidemic in catastrophic terms, a giant waking bear that no one can fully grasp, never mind contain.

Russia officially claims 230,000 HIV cases, and 800 AIDS cases, including 191 children. Six hundred people have died over the years. This spring, Dr. Vadim Pokrovsky, the country's top AIDS scientist and head of the federal Center for AIDS Prevention and Treatment in Moscow, put Russia's HIV caseload at 1.5 million, with 4.5 hidden cases for every documented one.

These numbers are based on some almost 25 million HIV tests carried out in the general population each year for the past decade. Before 1996, only 600 cases were detected.

Others worry the low-ball AIDS estimate is missing a more serious problem. "The surveillance system is not useful if you don't have controlled sites or control groups among the highest-risk groups," said Pedro Chequer at the United Nations AIDS Programme (UNAIDS) Moscow office. Chequer is a Brazilian who helped develop the much-lauded AIDS treatment program in his country.

"They say they have 240,000 people but that AIDS cases are less than 1,000. That's not possible," he added, "Look at Brazil: it has 700,000 persons with HIV and 230,000 AIDS cases. So, something is not right here." But Dr. Pokrovsky maintains that the low AIDS caseload reflects HIV's late appearance in the region.


After the Fall
Russia's AIDS crisis has its roots in the fall of Communism in 1991. Russia not only embraced capitalism and "shock therapy" economic reforms, but what some call the freedoms and sins of the West, including hard drugs, and prostitution.

The privatization of national industries, including the bloated, corrupt health sector, also caused the rapid collapse of public services and outbreaks of disease. By 1996, alcoholism, TB, syphilis, gonorrhea, hepatitis B and C were endemic. A third of the country was jobless, while the number of drug addicts had jumped a hundredfold, overcrowding prisons.

Compared with elsewhere, the epidemic in the former Soviet bloc has a very young face. Eighty percent of HIV infections are in people under 30, and 20 percent are teenagers. In the Central Asian Republics, half of all cases are in youth under 20.

The epidemic was first concentrated in Moscow and St. Petersburg, but has spread to poorer, remote regions like Siberia, prompting one US political analyst to predict that the epidemic in Eurasia, if unchecked, could one day surpass that of sub-Saharan Africa.

Today, there are 500 to 800 newly registered HIV cases a week and a growing percentage are linked to heterosexual transmission, not drug use or homosexual contact. Federal statistics capture the trend: in 2001, the ratio of male-to-female cases was 10:1; now it is 4:1. At the mobile trailer site, the ratio has reached 1:1 among new cases. The average age of infected girls also has dropped to become 2.5 years younger than boys.

Girls Hit Hard
Behind these figures is a generation of Russian teenage girls who become heroin addicts, enter sex work, and then contract HIV and hepatitis. Throughout the region, a growing number of infants born to HIV-positive, drug-addicted women have been abandoned. These orphans live in hospitals, because no orphanages in Russia will accept them.

HIV is also rising among street children. At age 9 or 10, they start sniffing glue and are soon exposed to HIV through rape, and in the case of older children, prostitution; by 14 they are in informal gangs, shooting drugs, having sex with each other, picking up and passing on HIV. "We are talking about a situation that is unimaginable, even to us," admitted Alexander Tsekhanovitch, head of the mobile program. "We are still a little afraid to evaluate the status of things."

DEC. 15, 2003. Outside of Russia's Health Ministry, critics say AIDS is still not a priority for many political leaders. President Vladimir Putin has yet to make a public speech about the threat.

Until now, Russia has had no national AIDS treatment or prevention program, and regional programs and NGOs have led the charge. The ban on methadone and drug maintenance programs is another crisis of leadership. The Russian government has failed to invest a ruble in harm reduction programs, leaving foreign donors to back the few local support programs for drug addicts.

Right now, Russia's AIDS budget is a paltry $3.7 million dollars. The average anti-HIV combination therapy costs $7,000 a year. "If you have 230,000 people, you see that raises a big problem," said Dr. Vadim Pokrovsky, the country's top AIDS scientist and head of the federal Center for AIDS Prevention and Treatment in Moscow, who has become outspoken on the need to increase the federal budget.

"About $2 million is directed to treatment out of this, and this will be enough only for several hundred. In a year, I expect, there will be many more patients and not a lot more money," Dr. Pokrovsky says. He estimates that $65 million is needed just for education and prevention to confront the epidemic.

Few Get Treatment
Anti-HIV treatment is free in Russia to those who qualify but is strictly controlled. It is provided only through city or federal AIDS centers. In Moscow and St. Petersburg, a proof of city residency is required to obtain HIV drugs free of charge.

By Dr. Pokrovsky's count, around 1,000 of 20,000 HIV-positive Muscovites were receiving triple-drug therapy from the Moscow AIDS center in April. About 50 more were on a waiting list for the drugs. In the CIS states as a whole, 10,000 people were on treatment last year, out of 80,000 identified HIV-positive individuals.

"In Moscow, it isn't such a problem to get the drugs," said Roman Dudnik of AFEW, "but it is a problem in other places. In the cities where the oil industry is richer and money is available, the AIDS centers are better set up and more treatment and testing is available. But in many regions, you can't do a CD4 or viral load test, so it's hard to know how many really need treatment."

"With respect to HIV drugs, it's a tragedy and an outrage," said Masha Gessen, a well-known journalist who works for a leading Russian online news service. "It's provided only to a few people and specifically to people who are registered to live in those cities and are not drug users. So that rules out 90 percent of the people who may potentially benefit." Gessen has a friend without residency papers who recently sought treatment from the Moscow city AIDS clinic and was threatened with deportation.

The reality is that many HIV-positive people are in prison serving drug sentences. There, HIV treatment is limited aside from pilot MSF prison programs.

"I am afraid that thousands of youth who get HIV infection in the last three to five years will die very soon, in the next years," said Gennady Roshupkin, one of Russia's leading HIV-positive activists. "Because, for a lot of them, HIV specialists can't do anything."


Activist Push
Over the past year, the situation has improved due to activist and NGO pressure and behind the scenes brokering by AFEW, the Open Society Institute, UNAIDS and the World Health Organization.

A national AIDS advisory council is being formed that will include HIV-positive groups, and the first regional meeting of CIS AIDS activists was held in April in Minsk with help from US activists. The meeting concentrated on the obstacles to treatment information and access.

Russia recently accepted two World Bank loans, $50 million for HIV/AIDS programs and $100 million to fight TB. The money will go to mass media campaigns, among other priorities.

Russian health officials are now drafting a national plan and a grant proposal to the Global Fund to Fight AIDS, Tuberculosis and Malaria. At the moment, there are two competing proposals: one by public health officials and another by an elite academic group led by Dr. Pokrovsky's father, who heads the country's medical academy.

Unlocking the Doors to Treatment
The cost of treatment remains a big hurdle. The state produces two drugs: AZT and a homegrown AZT derivative. It has registered 12 brand-name medications, and Trizivir will soon be added to the list.

With the potential Global Fund money, Russia could opt for cheaper generics, but activists worry that it will avoid this alternative because, said Gessen, "Russia is hoping to become a member of the World Trade Organization and doesn't want to be seen as taking a position against patents."

Off the record, one top health official said that Russia would prefer to negotiate a steep discount on patented drugs from companies with whom it has established relationships. "This is a political question," he admitted. At UNAIDS, Chequer is pushing Russia to revive its moribund pharmaceutical industry and produce its own generics, just like Brazil.

Another hurdle is the dilapidated state of the public health system. Activists say it retains vestiges of the old heavy-handed Soviet bureaucracy. HIV testing is mandatory for prisoners, pregnant women, blood donors, soldiers and those needing surgery, but in practice, it is routinely done in those seeking care from health clinics, often without their knowledge or consent.

On paper, government AIDS programs include voluntary counseling and testing services but, Gessen said, "There is really no such thing as consent, regardless of what the government may say. There is no protection of the rights of people with HIV, who, for the most part, happen to be drug addicts and prostitutes. Forget it!"

Many citizens have obligatory medical insurance and in theory, are freely treated at public hospitals and polyclinics that house a variety of specialists under one roof. Infectious diseases like TB are treated in separate clinics, as are STDs.

Since HIV-positive drug users may be coinfected with STDs, TB and hepatitis, treatment is not well coordinated. Those released from prison or rehab programs are often lost to follow-up due to a lack of adequate discharge planning.

An AIDS Clinic That Works
Compared with the city hospitals, which are rated as mediocre to terrible by Russians, the AIDS clinic at St. Petersburg's Botkin hospital receives good marks. Botkin is a huge state facility that treats 38,000 inpatients a year and 70,000 on an outpatient basis.

The AIDS unit offers counseling and testing services, clinical care, surgical services and treatment to qualified patients. A special obstetrical unit exists for pregnant women, and AZT and rapid testing are offered to prevent maternal HIV transmission.

Under treatment guidelines drafted by Dr. Pokrovsky, HIV treatment is available to anyone with a CD4 count under 300 cells/mm3, a viral load above 60,000 copies/mL or HIV-related symptoms. AZT, 3TC and indinavir constitute the standard first-line therapy.

Around 120 people began triple-drug treatment at Botkin four years ago, and the results have been very positive so far. There have been no deaths in the group, and serious AIDS cases have generally recovered.

"Our experience is quite positive," said Dr. Vladimir Musatov, who heads the Botkin infectious disease ward. But medicine, tests and materials are limited at the hospital, and patients sometimes pay for services. Although viral load tests are available, there is an emphasis on clinical monitoring and on less costly CD4 cell tests.

Dr. Musatov acknowledged that, even with drugs, management of coinfected TB/HIV patients is an enormous challenge, and almost impossible in active drug users. Outside Botkin, things are worse. "The conditions in the polyclinics are really quite low. There is poor training, equipment, especially laboratory equipment," Dr. Musatov confirmed. "The really successful treatment of patients in my mind is in specialized hospitals."

Russia's Survivors
One is Republican Hospital, located an hour away on the outskirts of the city. It offers care to nonresidents, with three departments specializing in care for children with HIV. Some belong to an initial group of 270 infants who contracted HIV in pediatric hospitals in 1989 from contaminated blood and equipment, an official scandal branded "the Elista incident."

Half the children are now dead; the other half began getting AZT in 1991, then dual, and now triple therapy. One hundred of the 130 survivors receive treatment. As a group, they constitute Russia's long-term survivors. Some spent most of their lives growing up in hospitals.

"When we start to treat our children, they are very small, but they grow very quickly," said Dr. Yevgeny Voronin, a strong advocate for HIV-positive children. But adherence is a major problem for children and their caregivers, he noted. "When a child is psychologically exhausted, they prefer a miracle: one pill, and health. It's very difficult."

The drugs are not working as well in some of the long-term survivors who have had HIV for 13 years and received mono and dual therapy. Some have developed drug resistance. Side effects such as metabolic problems and lipodystrophy have also surfaced.

In 1997, many AIDS centers began providing short-course AZT to pregnant mothers to prevent mother-to-child transmission (MTCT). Mothers who fail to get prenatal care are supposed to receive rapid testing during delivery. But only a few sites have rapid tests, and drugs are missing in many hospitals. In a controversial move, Dr. Pokrovsky says the government now plans to automatically provide MTCT drugs to all pregnant women who are intravenous drug users, eliminating the need for consent or testing.

Love is the Drug
Across Russia, widespread ignorance and stigma surrounding the disease still facilitate the isolation of people with HIV. The vulnerability and instability of drug users, sex workers and street children makes these groups especially hard to mobilize.

Sergei, 25, is a volunteer coordinator of a mixed support group that meets at Botkin hospital and is open to HIV-positive and -negative people. It is one of around ten support groups in the entire country.

Sergei was serving his military duty in the north when he tested positive for HIV during routine screening for new recruits. He openly admitted to doctors that he had used drugs, and was immediately isolated in a diagnostic ward for 25 days with five other soldiers. "If you have this diagnosis, people are afraid of you as if you had the plague, or are a leper," he said.

His group was fed separately and only briefly allowed outside the isolation ward to smoke and talk to people. "People would pass by and peep into this window like we were animals in the zoo," he recalled bitterly. At 5 a.m. one day he was woken, taken to the train station, and sent packing without food or money.

"Like everyone, I was afraid and I was totally isolated," said Sergei. "People are just told they are going to die, and there is so much misinformation. For me, being with those other guys who had HIV helped. We supported each other. That's why I believe we have such an important role to play now."

He said a close friend who was recently diagnosed with HIV just committed suicide. Another friend was on the verge of killing himself when Sergei met him. "These people feel desperate, like they are the only ones," he recalled. "Nobody is helping them."

"The first wish of every person is to get that magic pill. But from my point of view, in Russia now, we have more need for psychological support, for jobs, for AIDS prevention, even before treatment," said HIV-positive activist Gennady Roshupkin.

"The doctors and medical professionals concentrate on access to pills. But they have no skills or knowledge about how to work with a person who has to take a pill every day. Support is more important. It can't be forgotten. That's why support groups are so important," he said.

"All of this is just beginning in Russia," added Roshupkin. "It is the beginning of a movement, but we have so much work to do. As activists, we need to show all these young people how to live and stay healthy, not just survive, but how to carry on with their lives."