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EUROPE
HIV Erupts in Russia
Part 2: Putin's Silence
By Anne-christine d'Adesky
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."
This article originally appeared in the amfAR Treatment Insider, published by the Treatment Information Services department of the American Foundation for AIDS Research.