Last woman standing: one woman's fight against HIV in Estonia (3)
Disaster. That is the word Nelli Kalikova uses to describe the outbreak of HIV in Estonia in 2000.
“It was like a disaster,” the harm reduction projects manager at NGO AIDS Information and Support Center repeats. “But it was a disaster that we were waiting for.”
Despite Estonia’s tiny population of 1.3 million, it has one of the highest rates of HIV and Aids infections in Europe and the highest level of drug related deaths.
Figures reported by UNAIDS focusing on 2012/2013 showed that there were 24 users per 100,000 people which puts the country in the top five EU/EEA countries for HIV infections. And an evaluation of treatment for HIV/Aids in Estonia produced by the World Heath Organization (WHO) in July 2014 stated the virus “will remain a public health problem in the coming years”.
However both reported, “substantial progress has been made” in getting the rate of new infections down.
Sitting in her office Kalikova, who has worked with HIV patients for 28 years, told ERR about the steps she and the charity have taken over the last decade to bring the numbers down.
The center is based in Kopli, Tallinn and she says it is not popular with the neighbors who claim that drug users disturb them and that the center devalues the prices of their property. In the reception, leaflets about prevention of HIV and the importance of protected sex line the walls, and in the corner a television plays Russian TV. A thin young woman in jeans sits on a bench waiting for an appointment and volunteer stands behind the desk ready to hand out condoms and clean syringes.
In the next room, sitting behind a desk cluttered with papers, Nelli picks up a pen, turns over a sheet of paper and begins to draw a simple line graph.
Beginning of epidemic
The first diagnosis of HIV was diagnosed in Estonia in 1988 and since then (as of October 2015) 9,198 cases have been reported. Of those, 6,174 were men and 3,024 women.
“From 1988-1999 we had around only 100 cases and they were mostly among the gay community,” she told ERR. “The number was very, very low. But then suddenly, in 2000, it became an epidemic – and by 2001 we had 1,474 registered cases.”
Kalikova was working as a doctor in Hospital of Infectious disease when in 1987 the order from the Soviet Ministry of Health in Moscow arrived, to open first anonymous HIV testing room and HIV prevention center in the Estonian capital. Born in Estonia and speaking Estonian, Russian and English fluently, she trained as paediatrician in St Petersburg, but subsequently went on to work with infectious diseases.
Only after large needle exchange programs were implemented in Tallinn and in North-East of country in 2001, did the figure of new HIV cases started to drop and have continued to do so.
The 66-year-old said: “Every year we have seen a lower and lower number, but even what we have now is a very high number for Estonia.”
In the last decade, the figures of HIV diagnosis have dropped from 62 per 100,000 people in 2003 to 25 per 100,000 in 2013, according to UNAIDS – the Joint United Nations Programme on HIV/AIDS – which focused their report on 2012/2013. They reported that in 2013, 2.2 million free syringes and 460,000 free condoms were distributed by Estonian NGOs and hospitals.
However, World Health Organization (WHO) think that the full extent of people with HIV is not fully reported. Their report also suggests that around only a quarter of those infected are seeking treatment. They said the virus is mainly concentrated in the “most-at-risk sub-populations” of people who inject drugs, their sexual partners, commercial sex workers and men who have sex with men.
New cases dropped to 291 in 2014 and so far, there have been 209 confirmed new diagnoses of HIV this year, with 35 percent diagnosed in people who use needles, 62 percent who got it via heterosexual contact and 2 percent mother to child contact.
NGO AIDS Information and Support Center is not the only NGO in Estonia helping people with HIV and aids, but Kalikova says it is the only one that offers most of the harm reduction measures: needle exchanges, free condoms, advice and information and methadone treatment. Methadone treatment is available with help of Medical Center Elulootus, located in the same place. She says everyone is treated equally and without prejudice.
Russian community more affected
She told ERR News that the spread of HIV largely came from the east – on “Russian roads” – and was more commonly seen in the Russian speaking communities. She estimated that a decade ago, infection rate used to be split 98 percent to two percent between Russians and Estonians.
Clusters of the infection are found around Ida-Viru County and Tallinn, with very few cases seen in the rest of the country. This is according to statistics by WHO which show 46 cases per 100,000 people in Tallinn, 81 per 100,000 in Ida-Viru County, but just 2 in 100,000 in the rest of the country. Kalikova said the virus was originally carried to Estonia from St Petersburg – it was first found in Ida Viru county and then spread to Tallinn.
According to Kalikova, the nature of the epidemic has changed in the last 10 years – she has seen a “dramatic rise” in the figures of Estonian people, which now stands at around 30 percent of all infected cases. The same changes have occurred in women catching the infection; during last decade the number of them has risen from 15 percent to 40.
Kalikova said the center does not advertise itself, but information is passed on by word of mouth to those who need it. These people, she argues, do not read newspapers, watch TV, or listen to the radio – so advertising campaigns are unlikely to be effective. Much more effective is direct contact and street work.
Speaking about the early years of the HIV treatment, she paints a grim picture. Most HIV patients died and the first anti-HIV drugs were so “dangerous”, some people simple chose to carry on living without treatment.
“At that time the work of a doctor was very dramatic, most of the patients were living, but without hope of surviving,” Kalikova said. “We lost a lot of patients until 1998 – before antiretroviral treatment (ARV) came to Estonia. It was a very hard time. Now ARV is available across the country and effectiveness depends only from motivation of a patient to be treated.”
Last woman standing
At the end of the interview, she opens the door of a cupboard next to the entrance. Inside are two vast green tanks – as tall as herself – which are filled with needles. “We get about 20,000 a month,” she says. The center give out between 20,000 and 25,000 fresh, clean needles each month.
Kalikova says that she has plans to retire, in order to spend more time at home with painting pictures, reading books, and with her cat, but so far these plans have been shelved twice. Her excuse is that until now there has been no one to take her place, but she has more confidence in the new generation of social workers.
However, a love of the job is what keeps her at her desk. She said: “If you start with this work then you cannot stop it."
“It is like when you see a preacher in the street and they try to take you to church, they want to save you. I understand that now. It is very simple to prevent this terrible disease – condoms, clean needles… I just want to go up to them and tell everyone. I want to save them all,” she added.