| HIV
Erupts in Russia http://www.thegully.com/essays/russia/031215_russia_HIV_AIDS_1.html
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."
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