HIV/AIDS NEWS
CASH AND COMMITMENT:
INTERNATIONAL SUPPORT FOR
THE FIGHT AGAINST AIDS
A QUESTION OF LIFE AND DEATH:
ACCESS TO TREATMENT
MOVING INTO ACTION:
PARTICIPATORY ASSESSMENT
AND RESPONSE
FROM BEYOND THE PALE:
SUBSTITUTION THERAPY IN UKRAINE
From the Frontline
The international HIV/AIDS Alliance in Ukraine is pleased to present the first English digest of HIV/AIDS News, the newsletter published by our Information and Resource Centre.
Alongside the Russian Federation, Ukraine has the fastest-growing HIV epidemic in Europe. Between 300,000 and 400,000 people, one percent of the adult population, are estimated to be HIV-positive. So far, the epidemic has been largely confined to inject-ing drug users, but the proportion of new infections in the wider population through sexual contact is thought to be increasing.
The figures make a gloomy picture. But the activity of the Ukrainian government, non-government organisations and the international community in tackling the epi-demic is also increasing almost daily. A presidential decree has named 2002 the Year of the Fight against AIDS in Ukraine; we hope the name will be justified by more, and more effective measures in the prevention and treatment of HIV.
HIV/AIDS News examines in depth issues relating to HIV/AIDS prevention, treatment and care and support, drawing on experience in Ukraine and worldwide. It is published six times a year in Russian, to share information and improve communication among state institutions and non-government organisations in Ukraine and in neighbouring countries.
This digest contains a selection of material from the first four issues, which were devoted to international donor activity in Ukraine, to access to treatment, to situation assessment, and to substitution therapy. We hope publishing this material in English will help bring to a wider audience news of the HIV/AIDS epidemic in Ukraine, and the invaluable work being done to combat it.
Lily Hyde Editor
The International HIV/AIDS Alliance in Ukraine . . . pages 2-3 International Organisations in Ukraine . . . page 4 A Matter of Life and Death: Access to Treatment . . . pages 5-6 Treatment for HIV Saves Resources as Well as Lives . . . page 7 A Drop in the Ocean . . . pages 8-9 Moving into Action: Participatory Assessment and Response . . . pages 10-11 Injecting Drugs and HIV: the Ukrainian Epidemic . . . pages 12-13 Assessment Results: New Vulnerable Groups and New Strategies . . . pages 14-15 Participation in Practice . . . pages 15-16 Communicating on the Right Wavelength . . . page 17 From Beyond the Pale: Substitution Therapy in Ukraine . . . pages 18-19 What Next? . . . page 20 Repression is Not the Answer to Problem Drug Use . . . page 21 No Longer Trembling at the Thought of Tomorrow . . . pages 22-23 Ukraine at the United Nations General Assembly
Special Session on HIV/AIDS . . . page 24 News and Events . . . pages 24-26 Peter Piot and Paula Dobriansky Visit Ukraine, and the Alliance Office . . page 27 Letters . . . page 28
N
GO Support and Resource Development for HIV/AIDS Prevention, the International HIV/AIDS Alliance's programme in Ukraine, has been active since December 2000. It is financed by the United States Agency for International Development (USAID) under the EU-US Transatlantic Initiative against HIV/AIDS. The other half of the initiative is financed by the European Commission and implemented by the British Council.The International HIV/AIDS Alliance is an international non-profit organisation, established in 1993 to assist community action in response to the HIV epidemic in developing and transition countries. Since its foundation, it has support-ed over 1150 non-government and community-based organisations in 40 countries of Africa, Asia, Eastern Europe and Latin America.
The Alliance programme in Ukraine prioritises support to reduce HIV infection in the population groups most vulnerable to it, develop community support for people with HIV and those close to them, improve services for people with HIV and those groups most vulnerable to HIV, and identify, share and replicate best practice in effective community action. We provide international experience and financial and techni-cal support to develop the capacity of local non-government and commu-nity-based organisations. We seek to
enhance the quality, quan-tity, synergy and sustain-ability of their work. We aim to secure the support and partnership of local and national gov-ernment in i m p r o v i n g
services for vulnerable communities. In developing the capacity of non-government organisations, and involving communities and their most vulnerable groups into the response to the HIV/AIDS epidem-ic, the Alliance has the following objectives:
z reduce the level of sexual trans-mission of HIV;
z mitigate the harmful effects of the virus on people living with HIV;
z reduce the level of HIV among injecting drug users;
z increase national capacity for well-targeted, evidence-based, and co-ordinated community action; z reduce social and political
obsta-cles to effective community action. The Alliance's Ukraine pro-gramme comprises of two intercon-necting components: support of non-government organisations (NGOs) working in the field of HIV, and an Information and Resource Centre.
NGO Support
Non-government organisations play a vital role in HIV/AIDS pre-vention, working most closely with vulnerable groups and actively involving them in prevention pro-grammes. The Alliance provides support to organisations to widen the spectrum of their activities, introduce new, efficient forms of prevention, and increase the scale of existing projects.
To date, the Alliance is collaborat-ing with community-based organi-sations in 20 regions of Ukraine: Vinnitsa, Dnipropetrovsk, Donetsk, Zhytomyr, Zakarpattia, Zaporizhia, Ivano-Frankivsk, Kirovohrad, Luhansk, Lviv, Mykolaiv, Odesa, Sumy, Kharkiv, Kherson, Chernihiv, Chernivtsi, Cherkasy, the city of Kyiv and Crimea. The Alliance is currently providing financial and technical support to 25 organisations carrying out preven-tion projects among injecting drug users, commercial sex workers, men having sex with men, people living with HIV/AIDS and people with sexually transmitted infections.
NGO support staff, along with international consultants, have con-ducted trainings for partner NGOs on participatory assessment and response (see page 10), project design, and monitoring and evaluation. In 2002 the Alliance will establish and support a system of NGO exchanges, whereby NGO staff can make
The International HIV/AIDS Alliance in Ukraine
Introduction
Alliance staff training workshop led by facilitators from the Alliance in Great Britain and in Mongolia, Kyiv, March 2001
Presentation of the Alliance Information and Resource Centre, Kyiv, August 1, 2001
extended study visits to their coun-terparts in different regions in order to share experience and best practice.
The Alliance is also supporting a range of projects for people living with HIV, including care and sup-port, self-help groups, advocacy, and reducing stigmatisation and social prejudice towards people with HIV.
Information and Resource Centre
The lack of accurate information is a major obstacle to overcoming the HIV epidemic. Therefore the Information and Resource Centre of the International HIV/AIDS Alliance in Ukraine is developing and disseminating reliable informa-tion on different aspects of the HIV pandemic.
The centre's publications to date are:
Organisations Working in the Field of HIV/AIDS The most d e t a i l e d source of in-formation on services and resources in the field of HIV in Uk-raine. It lists the activities of nearly 200 AIDS-service NGOs, governmental structures and inter-national agencies working in Ukraine. Updated twice a year. In Russian.
People and HIV
The first U k r a i n i a n publication to c o m p r e h e n -sively cover the many as-pects of the HIV pan-demic. De-signed for different
pro-fessions and different ages, for men and women who want to know more about HIV and AIDS, it is of use to people living with HIV and to their friends and relatives, to repre-sentatives of government and non-government AIDS-service organisa-tions, to healthcare and social work-ers, teachwork-ers, and all interested and concerned people. Revised and updated annually. In Russian.
HIV/AIDS News The Al-liance Uk-raine's news-letter, pub-lished in Russian and in an English digest. Each issue is dedi-cated to a specific as-pect of HIV/AIDS, with correspon-ding information, professional opin-ion, and commentary from AIDS activists and decision makers.
AIDS in Ukraine
A quarterly policy brief-ing for those shaping state policy on H I V / A I D S . I n c l u d i n g s e n s i b l e resource dis-s e m i n a t i o n and strategies of co-operation with AIDS-service NGOs and organisations of people living with HIV, the aim of the review is to inspire state officials and policy makers to intensify their activity in the fight against HIV and AIDS. In Ukrainian. Participatory Assessment and Response The first publication in a method gui-dance series p r e s e r v i n g and sharing Ukrainian and international best practice for NGOs. The first issue is dedicated to a new approach to situation assessment which facilitates the participation of groups vulnerable to HIV in the response to the epidemic. In Russian.
HIV/AIDS and the Media
For journal-ists and edi-tors covering the theme of H I V / A I D S . Contains up-to-date infor-mation and statistics for Ukraine and worldwide, a glossary of essential terminology and the opinion of those directly affected by HIV/AIDS. In Russian. www.aidsalliance.kiev.ua Our website contains elec-tronic ver-sions of all the Alliance's publications, and much other useful information. In Russian and English.
Introduction
We welcome opinions and suggestions about our publications. Please send your comments to the International HIV/AIDS Alliance, 5 Dymytrova st, building 10A, 6th floor, Kyiv 03150. E-mail: [email protected]
Introduction
International Organisations in Ukraine
I
nternational concern over theHIV/AIDS epidemic in Ukraine has been increasing steadily over the last few years, and there are now up to 20 organisations (donor agencies, such as the United States Agency for International Development (USAID), which are sources of funding, sup-porter agencies like the International HIV/AIDS Alliance which channel funding and technical support usually to local NGOs, and humanitarian
organisations like Medecins sans Frontieres) working in this field.
The UNAIDS Theme Group on HIV/AIDS brings these agencies together to develop integrated strategies with NGOs and the gov-ernment programme; it also involves the commercial sector, especially pharmaceutical companies, in discus-sion and planning on a national level.
The following table shows which international organisations are
cur-rently working in what areas of HIV/AIDS care and prevention, and where shortages in funding and support exist. More detailed infor-mation can be found in the Alliance Directory of Organisations Working in the Field of HIV/AIDS in Ukraine. International agencies change their strategies and activi-ties frequently; we would be grate-ful for any amendments or updates to this table.
AFEW— AIDS Foundation East-West
Alliance— International HIV/AIDS Alliance
AIHA— American International Health Alliance
BC— British Council
CAP— Counterpart Alliance for Partnership
CIDA— Canadian International Development Agency
IRF — International Renaissance Foundation (Open Society Institute/International Harm Reduction Development programme)
MSF— Medecins sans Frontieres
UNAIDS— joint United Nations programme on HIV/AIDS
UNDP— United Nations development programme
UNFPA— United Nations population fund
UNICEF— United Nations children's fund
WAF— World AIDS Foundation
AREA OF PROJECT OR TARGET GROUP AGENCY HIV/AIDS WORK
Overview
Members of the All-Ukrainian Network of People Living with HIV/AIDS, attending a 2001 European conference on treatment for HIV, were struck by one key aspect of the lives of their West-European counterparts. Here were people who had been living with HIV for 15 or 18 years, and had hopes of living longer.
In Ukraine, no one has lived so long with HIV. That's partly because the epidemic began later — it is still in its first decade. It is partly because many people with HIV are living in difficult circumstances which take a toll on their health. But the main reason they cannot expect to live so long is the lack of treat-ment.
The issue of access to treatment is critical for Ukraine, where people with HIV are not only denied anti-retroviral cocktails which repress HIV so that it may never develop into AIDS. They do not receive the most basic medication for oppor-tunistic infections. They lack sup-port from society and even, some-times, family, easily-available good food and hygiene, an accessible health-care system and a positive attitude from medical staff.
Treatment is vital not only for humanitarian reasons, but because it is a crucial aspect of HIV preven-tion. The possibility of treatment provides an incentive to get tested for HIV; if people know their status they are likely to be more careful in their behaviour. In signing the Declaration of Commitment at the UN General Assembly Special Session on HIV/AIDS in 2001, Ukraine agreed to put treatment on the same level as prevention and care in its national programme. Those words have yet to be put into action. Yet there are many people living with HIV who cannot afford to wait.
T
he Ukrainian law on AIDSspecifies that all people with HIV should receive free treatment. But Ukraine cannot afford the current cost of patented anti-retroviral drugs — up to $10,000 per person per year for highly active anti-retroviral therapy (HAART) which is the norm for treatment in the West. Neither can it afford the necessary clinical diag-nostics and monitoring. A viral load analysis costs around $200, and only the Ukrainian AIDS centre, located in Kyiv, can perform such a test — and only for those on clinical trials. CD4 counts, which can be done at various government and private medical institutions, are also payable.
The vast majority of HIV infec-tions in Ukraine are among injecting drug users, who, all over the world, are sometimes excluded from anti-retroviral therapy programmes because it is believed they cannot adhere to the drug regimes.
On the plus side, Ukraine does have a comprehensive healthcare system, although suffering drasti-cally from a shortage of funds and current information and experience. It would be incorrect to suggest that this system is already adequately able to respond to the HIV crisis, but, with training and new equip-ment, the network of regional AIDS centres should be capable of admin-istering and monitoring anti-retro-viral therapy.
Initiatives to Improve
Access to Treatment
Nine proprietary anti-retroviral drugs, produced by the five biggest pharmaceutical companies, have been licensed for use in Ukraine and are available from a limited number of suppliers, at European prices. No generic anti-retroviral drugs (pro-duced at a lower price by manufac-turers who are not patent holders) have been licensed. Armenicum, an Armenian treatment for HIV which has not received international recognition, is undergoing trials at present for licensing in Ukraine.Pharmaceutical Industry
In 2000-2001, GlaxoSmithKline donated 2000 packs of its drug Retrovir for a UNICEF/Ministry of Health mother-to-child transmission (MTCT) prevention project.
Under the five-year Viramune Donation for Prevention of Mother-to-Child Transmission programme, which is already underway in sever-al African countries, Boehringer Ingelheim has pledged to donate suf-ficient Viramune for prevention of MTCT for all Ukraine for five years.
Government Programme
The national government strategy on HIV/AIDS includes a section on providing care and treatment for peo-ple living with HIV which envisions anti-retroviral therapy, treatment of opportunistic infections and preven-tion of mother-to child transmission.
V. Suvorov
In 2000, the state budget for the first time allocated UAH 1 million ($188,000) to buy a year's supply of anti-retroviral drugs and treatment for opportunistic infections for a limit-ed number of patients at the AIDS clinic at the Institute of Epidemiology and Infectious Diseases in Kyiv. Medicines bought under the state ten-der were however prohibitively expensive — $9000 mean cost per patient. In 2001, UAH 1.9 million ($358,000) was allocated for drugs to treat adults and children, but the ten-der included similarly expensive drugs.
The government programme allows regional administrations to purchase anti-retroviral drugs and medicine for opportunistic infections from local budgets, for their own regional treatment programmes. Limited use of anti-retroviral drugs to prevent mother-to-child transmis-sion, and treat needle-stick or other medical injuries and also some HIV-positive patients is already underway in Odesa, Donetsk and Zaporizhia.
The government programme is supposed to provide therapy for 1200 people in 2002 and 1600 in 2003. In fact, according to Alla Shcherbynska, head of the Ukrainian AIDS Prevention Centre, at present about 50 people are receiving state-funded treatment.
Accelerated Access Initiative
Ukraine, at the request of the Health Ministry, has been included in the Accelerated Access Initiative (AAI), a programme announced in 2000 by the five biggest interna-tional pharmaceutical companies (GlaxoSmithKline, Boehringer Ingelheim, Merck, Sharpe and Dohme, Bristol-Myers Squibb and F.Hoffmann-La Roche), along with five United Nations agencies (UNAIDS, WHO, the World Bank, UNICEF, UNFPA). Under the pro-gramme, countries which can demonstrate their ability to distrib-ute and administer anti-retroviral therapy will be offered proprietary
anti-retroviral drugs and drugs for opportunistic infections at up to 90 percent discount on world prices. The international pharmaceutical companies with representative offices in Ukraine have expressed their readiness to provide low-cost drugs under the programme, although only GlaxoSmithKline has said exactly what it would offer: Combivir for $2 per day.
Badara Samb from UNAIDS Geneva visited Ukraine in July 2001 to discuss implementing the AAI. Mr Samb calculated that, if Ukraine negotiated for the same drug prices Romania has already received under the initiative, it could provide treatment for all people living with HIV/AIDS at the cost of 0.9 percent GDP. However, Ukraine is the first country to apply for AAI where the majority of people needing treat-ment for HIV are drug users, for whom providing treatment remains controversial. According to Mr Samb, Peter Piot, UNAIDS execu-tive director, said Ukraine could set
an example to the world by provid-ing 100 percent treatment coverage for people living with HIV/AIDS, including drug users.
World Bank Loan
A five-year World Bank loan for AIDS and tuberculosis prevention and treatment in Ukraine has been under negotiation for almost 2 years. Originally the bank intended the entire amount dedicated to AIDS, $32 million, to go on prevention and care. But since the Ukrainian govern-ment has begun to stress the impor-tance of treatment, the World Bank now plans to include a sub-compo-nent of medical support and care for people living with HIV/AIDS, as well as training for medical staff and upgrading of AIDS centres. A pre-liminary breakdown of the final funds allocation is 13.5 percent on treatment, 7.5 percent on care and around 68 percent on prevention.
It is a Bank condition that the government must continue treat-ment begun under the loan as long as is required by the patient. Because of the high price of anti-retroviral drugs, just twenty adults will receive treatment with drugs purchased by international tender. It is not yet clear whether the Accelerated Access Initiative will provide patented drugs for a lower price. The loan will not support pri-vate Ukrainian pharmaceutical companies to develop their own generic drugs, which has been mooted as a long-term solution to Ukraine's HIV-treatment problem.
The treatment component of the loan is considered as a pilot to develop national protocols, schemes and standards. Ukraine has applied to the Global Fund for Fighting AIDS, Tuberculosis and Malaria, and if funds come through from this source a large proportion will be used to provide treatment.
Lily Hyde
Overview
V. Suvorov
Anti-retroviral drugs are only available to a tiny minority of people with HIV in Ukraine
Opinion
T
oday, all developingcoun-tries of the world are facing a crisis of access to vital medical drugs. In Ukraine, this cri-sis is most acutely felt by people liv-ing with HIV. Ukrainian hospital doctors work each day with the knowledge that,
because of the high price of med-icines, their pa-tients with HIV who might have lived will die.
Before 1996, the lack of medical
treatment for HIV was universal. Doctors and patients everywhere shared the same hope — that sooner or later, treatment would be discovered. Nor were they disap-pointed; it is already five years since developed countries started using anti-retroviral drugs which improve and prolong the lives of many thou-sands of people. But not in Ukraine.
Anti-retroviral therapy is a treat-ment of choice, and not all patients respond equally well to it. But the choice is only possible when treat-ment — not just anti-retroviral drugs, but also palliative and alter-native treatment — is accessible for every patient whose clinical indicators show that it is necessary, without charge or at least for an affordable price. Such, sadly, is not the case in Ukraine.
World experience shows that timely treatment of HIV can save on government spending. The initial outlay on anti-retroviral drugs seems large, but the mounting costs of hospital treatment for people with AIDS, insurance payments, care for dependents, pay for the staff of hospices (which will be urgently needed in the next five years) are a hundred time larger, with the potential to provoke a humanitarian crisis in Ukraine.
Some Ukrainian specialists assert
that, notwithstanding the signifi-cant number of people registered with HIV in Ukraine, the propor-tion of them needing anti-retroviral therapy is small. It seems to me that this assertion cannot be accepted as correct, since adequate laboratory meth-ods of monitoring HIV as a patho-logical process are not available in Ukraine. The condition of the immune system and the degree of 'aggression' of the virus in each individual patient is estimated by eye, as any practitioner from a Ukrainian AIDS centre will con-firm. To date, there is no universal-ly accessible testing for CD4 count and viral load, which are the only indicators for determining when to start anti-retroviral therapy, and further control of the infection. Providing these
tests in limited pilot projects for a small number of HIV-positive peo-ple is far from a solution. The mon-itoring of disease and its treatment are
inter-depend-ent issues which cannot be solved in isolation from each other.
The situation is further confused by another approach to solving the problem of treatment provision; the non-prescription of anti-retroviral drugs to people given the code of drug users (code 102) when they are registered HIV-positive.
It is widely believed that an active, dependent drug user may not be able to adhere to a complex regime of anti-retroviral treatment. But the make-up of this group of HIV-positive people has never been properly investigated and its
mem-bers are in reality not at all homo-geneous. The degree of drug dependency varies greatly from individual to individual: many have stopped using drugs since they were tested HIV-positive and have been clean for several years. Never-theless, in government HIV statis-tics they are still considered drug users. Therefore calculating the need of all HIV-positive Ukrainians for anti-retroviral treatment, based on the assumption that the majority are drug users, is deliberately mis-leading. There is no scientific proof of the real consistence of the group, nor are there objective laboratory indicators of virus development in these and all other people with HIV. An incorrect situation assessment of the need for anti-retroviral therapy will inevitably lead to a fallacious strategy, with the result that many of those living with HIV who need treatment will not receive it. Any influence upon the epidemiological situation in Ukraine will be minimal, and this in turn may dis-credit anti-retro-viral therapy in the opinion of the population and of policy makers in particular.
Ukrainian legislation on HIV/AIDS is among the most appropriate and progressive in the world, and we should not hesitate to unite the whole country in order to imple-ment it. The question of availability of treatment is a defining one in measuring our success, or failure, in responding to the epidemic.
Yelena Purick, MD, Senior Researcher/Analyst, International HIV/AIDS
Alliance Ukraine
Treatment for HIV Saves Resources as Well as Lives
The condition of the immune
system and the degree of
'aggression' of the virus in
each individual patient is
esti-mated by eye, as any
practi-tioner from a Ukrainian AIDS
centre will confirm.
An incorrect situation
assess-ment of the need for
anti-retroviral therapy in Ukraine
will inevitably lead to a
falla-cious strategy, with the result
that many of those living with
HIV who need treatment will
not receive it.
N
atasha's punishing medical schedule requires her to travel to Kyiv once a month from Mykolaiv, where she lives with her two children, to receive a bewildering array of pills she must take at appointed times daily if she is to suppress the level of HIV in her blood so that it does not develop into AIDS.But Natasha knows she is fortu-nate. She is one of only a handful of Ukraine's almost 44,000 people reg-istered with HIV who is receiving up-to-date, state funded anti-retro-viral therapy. Yes, the regime is hard. “But if you want to live,” she says, “you'll remember to take the medicine.”
People living with HIV are receiv-ing anti-retroviral treatment in Ukraine through three routes: free treatment purchased under the government programme, from an international clinical trial being con-ducted in Kyiv, and through private means — humanitarian aid, or pay-ing themselves.
All treatment funded from the central budget is administered to patients at the AIDS clinic at the Institute of Epidemiology and Infectious Diseases in Kyiv. Natasha is among about 20, out of 300 patients who pass through the cen-tre yearly, who are receiving gov-ernment-funded double or triple
therapy. A further 20 are receiving therapy through the clinical trial.
Svetlana Antoniak, a specialist from the AIDS clinic at the Institute, says the number of patients receiv-ing therapy is “a good rate, for our department. For Ukraine of course, it's a drop in the ocean,” she adds. “But we have to start small — even one life is worth saving.”
“You have to take the initiative to find out for yourself”
Insufficient services for people living with HIV in Ukraine are the result of many years of state policy based on the belief that HIV/AIDS is a political or social problem, rather than a medical one, says Ms Antoniak. It is up to HIV-positive people to research their condition and possible treatment. “There's no information about anti-retrovirals,” says Yelena*, who is HIV positive. “You hear all these new phrases, CD4, viral load, immunology, but doctors don't have time to explain; all they tell you is that there is medicine but it isn't accessible. You have to take the initiative to find out for yourself.”
Ms Antoniak comments that HIV-positive people also have to actively look for possibilities to get therapy through humanitarian aid. Unfortunately, aid is often an unre-liable source for medicine which has
to be taken long-term.
Even testing is largely a matter of personal means and ingenuity. The only patients getting regular viral load testing in Ukraine are taking part in the clinical trial. Unofficially, testing can be done at commercial diagnostics laboratories which send the samples to Russia or Germany for results.
Until 1996, the situation was eas-ier for doctors and for patients. CD4 testing, treatment for opportunistic infections and monotherapy with AZT were funded by the Government committee on AIDS. When the committee was dissolved, the funding disappeared, and doc-tors had to fight for any possible means to keep their patients on therapy. At the time, there were so few patients it was possible to ded-icate time to individual cases, appealing to colleagues abroad or to pharmaceutical companies for help. The Kyiv clinic has patients who have already been on anti-retroviral therapy for four years through these means. Some are at least part-ly funding it themselves.
Who chooses, and how?
Ukrainian doctors start adminis-tering anti-retroviral therapy later than is usual Western practice — mainly because regular CD4 counts and viral load tests are not avail-able. Usually patients from the regions are already showing signs of illness before they are tested for CD4, and then if their CD4 count is lower than 300 they are referred for treatment to the Kyiv AIDS clinic (in Western countries, CD4 count is usually 500-350 for a patient to be recommended therapy).
As well as having the right clini-cal indicators, potential recipients of anti-retroviral treatment should be able to adhere to the drug regime and come to the clinic in Kyiv for regular monitoring and to receive
Focus
A Drop in the Ocean
Staff and patients in the AIDS clinic, Kyiv
Focus
the next batch of drugs. Candidates are chosen only if doctors judge they are mentally ready for the pos-sible changes in lifestyle needed to accommodate strict drug regimes, and can cope with potentially unpleasant side effects (in Britain, special clinics with not only a doctor but an adherence nurse, a pharma-cist, a dietician, and a health advi-sor have been established to make sure HIV patients are ready to embark on anti-retroviral therapy). About 70 percent of Ukrainians registered with HIV are also regis-tered as active drug users who, it is often assumed, cannot adhere to demanding drug regimes. Therefore, most adults whose clini-cal indicators show they need treat-ment and are able to adhere to it in Ukraine at present are receiving anti-retroviral therapy, says the director of the Ukrainian AIDS Prevention Centre Alla Shcher-bynska. That's one reason why, despite government pledges to treat 800 people in 2001, the number is so much smaller — it isn't just that drug prices are too high. Dr Shcherbinska adds that a further 500 people are expected to be given state-funded treatment by 2003.
How long will it last?
Natasha received an HIV-positive diagnosis in 1996. In May 2001, after she was diagnosed with tuberculo-sis, she was referred to the Kyiv AIDS clinic, where doctors suggest-ed she start state-fundsuggest-ed anti-retroviral treatment.
Natasha is concerned about whether the government will pro-vide treatment for as long as she needs it. “Yes, I've thought about it. But I've no other option,” she says. “It's worth it even to live just an hour longer.”
The Kyiv AIDS clinic is oriented to providing therapy for two years (which is also the term of the clini-cal trial). After that, doctors and patients can only hope. “No one has made any promises,” says Ms Antoniak. “We can't give a guaran-tee.” In March 2002, the clinic was still waiting for state-funded anti-retroviral drugs for that year.
When asked about the future for people who have started on anti-retroviral therapy, Dr Shcher-bynska refers to strategic ment interruption, whereby treat-ment is halted for six months when the patient's viral load falls and CD4 rises to acceptable levels. It
saves a great deal of money and brings relief for difficult side effects. However the practice is far from universally accepted; some critics believe it increases the risk of developing AIDS, while others point out that it is vital to first establish a reliable, universal stan-dard of treatment before talking about its interruption.
Some people living with HIV are wary of embarking on a regime, especially under a clinical trial, when there is no guarantee for the future. “I wouldn't take part and take these tablets for a year when you have to take them for your whole life,” comments Yelena, who was tested for the Kyiv trial but whose clinical indicators did not fit the criteria. Andrei enrolled on the clinical trial but then dropped out, both because he did not feel psy-chologically ready to start taking anti-retroviral drugs at the time, and because he knew he could not continue treatment afterwards. “That pleasure [of continuing anti-retroviral treatment] is too expen-sive, and they didn't make an effort to choose people who were rich enough to fund further treatment themselves,” he says.
Sergei, a patient at the Kyiv AIDS clinic, had got to the stage when he could no longer work because of a permanent tempera-ture, fatigue and wasting. He was diagnosed HIV positive in 1996. Since starting anti-retroviral therapy under the government pro-gramme in February 2001 “it is already showing results; I'm in a much better state,” he says. “I'm prepared to keep taking this treat-ment for a long time to come, and I hope the government is prepared to provide it.”
*Some names of people living with HIV/AIDS have been changed.
Lily Hyde Outside the AIDS clinic, Kyiv. The sign reads ‘Medical Aid’
Overview
In 2001 the International HIV/AIDS Alliance piloted in Ukraine the Participatory Community Assessment and Response (PAR), a new approach to situation assessment of HIV and vulnerable groups.
PAR projects were carried out by 20 NGOs in different regions of Ukraine, looking mainly at HIV-vul-nerability and injecting drug users. The Alliance presented the assess-ment results at the 13th Inter-national Conference on the Reduc-tion of Drug-related Harm in Ljubljana, Slovenia, March 2002.
It is all too easy for outsiders to impose a solution on a problem they do not experience directly, but such a top-downwards approach is rarely succesful. The Alliance, of course, is an international organisation bring-ing ideas from elsewhere to bear on Ukraine’s HIV epidemic. But the core idea of the PAR is that it works from the inside and from the ground up, with the active participation and commitment of those directly involved — in this case, mainly peo-ple injecting drugs. We hope, as a result, that projects based on the assessments will be truly relevant and accessible to those who need them.
For the PAR approach to be gen-uinely effective, the people using it have to make it their own. That means adapting and altering the approach to fit the situation in their country, their town, their street. The PAR should offer new insights into the HIV epidemic in Ukraine, and into ways of tackling it. We hope many local organisations will use the approach in whatever way is appro-priate to their own situation — and let us know the results.
Lily Hyde
W
e know what the problemis — we need action, not more situation
assess-ments! This is a common view among
those working directly with people who are most at risk from, or affect-ed by, HIV infection. Staff at harm reduction services in many countries are dealing with the daily crises of the HIV epidemic. Faced with this public health emergency, it must feel as though there is little time or need for further assessments of the problem of HIV/AIDS. The answers are clear: more clean needles and syringes, more drug treatment options, more primary health care services for drug users and their sexual partners.
But knowing these answers is not the same as putting them into prac-tice. Over the many years that the International HIV/AIDS Alliance has been supporting community action on HIV/AIDS in developing countries, it has learned important lessons about how to move commu-nities, families and individuals into action on HIV prevention. Far from being a waste of valuable time and resources, assessment has been identified as a critical moment in this process of mobilisation.
This has meant redefining what is usually referred to as situation assessment or community assess-ment. Through its work in Asia, Africa, Latin America and more recently in Central and Eastern Europe, the Alliance has developed an approach that differs in three significant ways from more conven-tional understandings of assessment work. While the Alliance's thinking and practice continue to evolve, this approach is currently defined as Participatory Assessment and Response (PAR). The three distinct features of the PAR approach are: z emphasising participation.
Whe-reas conventional approaches to
assessment typically use survey methods for gathering informa-tion from community members (for example, questionnaires), the Alliance has designed and refined interactive tools and techniques that help people to participate more actively in sharing and dis-cussing this information.
z Combining information-gathering with analysis. The purpose of increasing people's participation is not only to improve the quality of the information being shared, but also to involve community mem-bers in making sense of that information. This emphasis on community participation in analy-sis is in sharp contrast to more traditional assessments, in which information is gathered from communities and analysed else-where by project staff and other 'experts'. But involving commu-nities more actively in analysis can help to ensure that problems and responses are defined more specifically in relation to local contexts.
z Defining assessment as action. Situation assessments are usually assumed to take place before action on a problem begins; the
Moving into Action:
Participatory Assessment and Response
Material produced during an Alliance PAR training workshop
purpose is to gather information which can be used to plan more effective project responses. But through emphasising community participation in the assessment and its analysis, the PAR approach seeks to link the ques-tions “What is the problem?” and “What can we do about it?” By bringing together potential target groups, community members and other stakeholders to share their analyses of problems and possible solutions, participatory approaches to assessment are the first steps in taking community action. The relevance of such an approach to assessing the drug-related HIV epidemic in Ukraine quickly became apparent. As a result, the Alliance held two train-ing workshops in Participatory Assessment and Response for non-governmental organisations in 2001. Staff from harm reduction services who came to the workshops knew that injecting drug users are usual-ly, understandably wary of 'out-siders' who come to ask them ques-tions about their lifestyles in order to 'help' them. But in applying the PAR approach, they found that they were able to build closer rela-tionships with the drug users with whom they work by involving them more actively in analysing problems related to HIV and drug use and
their possible solutions. This active participation also produced a more detailed picture of the vulnerability of local drug using populations, and a better understanding of how harm reduction services can best reduce such vulnerability in specif-ic local contexts.
The PAR approach also chal-lenged many NGO staff to think about their own attitudes. Traditional attitudes to injecting drug users as 'clients' or 'patients' in need of 'expert' help no longer seemed appropriate in an assess-ment process that relied on the sharing of experience and expertise between service providers and service users. Staff came to re-cognise that mutual respect and partnership are critical to the suc-cess of the PAR approach to stim-ulating drug user action on HIV prevention. More broadly, the use of the PAR approach also helped mobilise the support of a wide range of community stakeholders for harm reduction efforts, build-ing a greater consensus of the need to move into action, and the essen-tial role that harm reduction serv-ices must play in responding to HIV/AIDS in Ukraine.
When PAR works well, it works because it redefines assessment as a community dialogue about, rather than an external scrutiny of, the
HIV epidemic and the situation of drug users in that community. But this raises critical questions about who is included in this definition of community, and in particular the extent to which marginal voices are included in the dialogue — for example, some of the NGOs using the PAR approach in their assess-ment work had difficulty involving female drug injectors and younger injectors. It also appears that PAR works better in communities with more clearly defined identities, more organised communal net-works (both among users and non-users) and stronger leadership structures, and faces greater obsta-cles where these factors are miss-ing. But this is not just a challenge for the PAR approach, but for harm reduction agencies in Ukraine more generally in identifying the role they can play in helping to strengthen community identity, networks and leadership.
Finally, there is the question of sustaining the action on HIV pre-vention that PAR has begun. The Alliance has committed financial and technical resources to support-ing the HIV prevention projects that result from the PAR work. But it is the commitment and resources that the PAR approach has helped to mobilise at communi-ty level that will ensure that a broader harm reduction movement emerges in Ukraine to challenge a devastating epidemic.
Alan Greig
Alan Greig is the author of a toolkit on the PAR approach. He is an independent consultant based in Berkeley, California, USA, who has worked for the past ten years on HIV prevention, harm reduction and gender issues in the UK, the US, Ukraine, and several countries in Asia and Africa.
Overview
The word ‘drug’ covers a wide vari-ety of substances which produce psy-chological and physical changes in the body. In this overview, the drugs under discussion are those which are prohibited under Ukrainian law and which can be injected. These are pri-marily opiates (like heroin) but also other psychotropic substances (like amphetamines). It also considers the harmful or problem use of drugs. Those harms include HIV infection and other medical, social and psycho-logical problems.
I
llicit drug use in Ukraine is rap-idly increasing. At the end of 2000 there were nearly 75,000 people registered in drug addiction treatment clinics (most of them injecting drug users). The real num-ber is believed to be many times higher.People start using drugs for differ-ent reasons; curiosity, and to escape boredom, economic hardship or phys-ical pain are often cited in Ukraine. Unemployment, poor medical services and weakened law enforcement all contribute. In many areas it is also influenced by peer pressure.
Unlike Western Europe, where the vast majority of illegal drugs are imported, production of shirka
or rastvor, a low-quality opiate
made from opium poppies, or poppy straw, is domestic and quite small-scale. Because it is cheap and easily available, shirka is by far the most widespread drug in Ukraine. However the consumption of imported heroin from central Asia, Afghanistan and Turkey is increas-ing, and Ukraine is on major heroin smuggling routes to Europe.
Patterns of drug use and HIV are similar all over the former Soviet Union, where widespread harmful drug use is a recent phenomenon and HIV infection among people injecting drugs has spread rapidly. At the end of 2000, injecting drug users still made up 80 percent of registered HIV cases in the NIS.
Drug Use and HIV
Sharing injecting equipment with-out sterilising it between users is a very efficient way of spreading HIV. Among Ukrainian drug users, dan-gerous methods of injecting and also of producing the drug are
wide-spread. Low-quality opium products prepared at home may have blood already mixed in with them from using dirty equipment. Drug users often draw their dose from a com-mon pot, or buy it already in a syringe which may have already been used. Sharing needles and syringes and other works is common for several reasons: cultural (for example, group ritual); economic (needles are expensive or unavail-able); or because of harassment from police if drug users are caught car-rying needles. People who have been injecting for a long time and whose veins are starting to collapse will employ an ‘injector’ to inject the drug for them, thus often losing control over the syringe.
Until the last few years, informa-tion about the risk of AIDS from unsafe drug use was non-existent.
Drug use is often connected with prostitution. People may use sex work to finance a drug habit, or sex workers may use drugs to cope with the hardships of the job. Information about safe sex practices was also, until recent years, unavailable.
Background
Injecting Drugs and HIV: the Ukrainian Epidemic
Collecting opium poppy seedheads for home-made drugs
What is Harm Reduction?
The harm reduction approach to drug use and HIV was developed in the mid-1980s in Great Britain. It focuses on tackling the direct 'harms' caused by illicit drug use, including HIV and other health problems like hepatitis, which can develop rapidly within populations of drug users, and pose an immedi-ate public health threat.
The harm reduction approach does not encourage or condone illicit drug use. But it recognises that it is a reality linked to many social and economic factors which cannot easi-ly be changed, and so it attempts first to respond to the immediate harm of HIV, which can be lessened or averted. Harm reduction can and should work within a framework aimed at more long-term results like prevention of harmful drug use and rehabilitation of drug users.
In Ukraine, harm reduction tends to be understood only as needle exchange schemes, because this is the most common type of project. Needle exchanges, where-by drug users can get clean inject-ing equipment in return for used, also educate drug users to always use new or sterilised works. Other projects, such as counselling and testing for HIV, substitution
therapy, rehabilitation and chang-ing the attitude of law enforce-ment agencies or changing the law to allow for safer drug use, should be part of a harm reduction strat-egy. In Ukraine, these, so far, are mostly ideals. But harm reduction works with a scale of means to achieve specific goals. The end goal might be total abstinence from injecting drugs, and therefore no HIV-transmission via injection. But while that remains unattainable, a more immediate goal, decreasing shared equipment which is the
prime cause of spreading HIV, can be manageably achieved by needle exchange projects.
Ukraine's first harm reduction project started in 1996. The Ukrainian law on AIDS guarantees provisions to prevent the spread of HIV among drug users, including creating opportunities for needle exchange schemes. However, harm reduction strategy is still widely misunderstood and distrusted by the population not immediately affected by drug use and HIV, and by local administrations and law enforcement agencies which still actively hamper harm reduction efforts, or fail to work in effective partnership with the NGOs realis-ing such projects.
Lily Hyde
Sources:
www.soros.org/harm-reduction Manual for Reducing Drug Related Harm in Asia (the Centre for Harm Reduction, Macfarlane Burnet Centre for Medical Research, Asian Harm Reduction Network)
HIV/AIDS in Ukraine: Situation Analysis (Ministry of Health, UNAIDS) People and HIV (International HIV/AIDS Alliance Ukraine)
Background
An injecting drug user brings syringes to a needle exchange point run by a harm reduction project in Sumy
An outreach worker from a harm reduction project in Mykolaiv hands out condoms to sex workers
Steps to Meeting Charity Fund
I
n spring 2001, ten NGOs experi-enced in work with marginalised groups started PAR projects in Vinnitsa, Donetsk, Zhitomyr, Mykolaiv, Sumy, Uzhgorod, Kharkiv, Cherkasy and Simferopol. A few months later organisations from regions where HIV prevention among injecting drug users has never, or scarcely, been implemented also con-ducted PAR projects in Ivano-Frankivsk, Znamenka, Pavlohrad, Luhansk, Kherson, Zaporizhia, Chernihiv, Kyiv and Lviv.The projects aimed to find out why people in Ukraine appear more vulnerable to HIV than the populations of other East-European countries. Why are levels of HIV not decreasing? The answers to these questions would allow the restructuring of help from NGOs and on the level of national and regional authorities for those vul-nerable to HIV.
The assessments made several important findings concerning com-mon problems existing in virtually every region, but also discoveries linked to the characteristics of cer-tain cities and regions.
Some general findings, confirming numerous professional hypotheses, were as follows:
z less experienced drug users for a whole range of reasons appear to be at a greater risk than more experienced ones.
z In all regions rural youth are at least potentially more vulnerable to HIV and other possible harms of drug use, than their city peers. z Marginal groups are the nucleus
of the HIV/AIDS epidemic. Family conflicts, divorce and the personal example of parents who use drugs are important factors. Family conflicts push teenagers onto the street where they join different social groups, including
injecting drug users.
z When assessing the accessibility of drugs, apart from traditional drugs (marijuana, amphetamines, opiates — heroine, morphine etc.) pharmacy drugs were found to be widely used for preparing new substances or as additives to other drugs.
z The assessment proved the
assumption that prisons play a crucial role in the spread of HIV, either within risk groups or among the wider population. z The assessment once again proved
the importance of co-ordinated work directed towards drug-related harm reduction as well as towards reducing risk caused by modes of sexual behaviour of rep-resentatives of vulnerable groups.
z The work of prevention
pro-grammes is complicated by the lack of an efficient infrastructure of services for drug users who wish to control the use of psy-choactive substances or stop using them altogether. Treatment for dependency, rehabilitation and even elementary detoxification are in most cases unavailable, and as a rule ineffective. Trust in state drug treatment structures contin-ues to decline in many cases because of the inability of these institutions to ensure anonymity. z Many drug users quit their jobs
because of drug use. Despite the
widespread availability of drugs in school toilets, in prisons, in the army, nevertheless drug users will spend the whole day looking for a dose, which makes them unable to participate in usual social life. There is no government assistance for providing substitution therapy. z Prevention programmes should be developed in close co-operation and conjunction with other serv-ices for vulnerable groups. It is especially important to consider potential work modes which utilise the free time of drug users and other communities at risk, in order to make up for lack of com-munication and attention.
z Indirect criminal sentencing for drug use hinders educational pro-grammes in communities of drug users. Drug use is not an offence and Ukrainian legislation allows the provision of sterile equipment for drug users. On the other hand, purchasing, storing and transport-ing narcotic and psychotropic substances are criminal offences.
z Abuse of human rights by the
militia (the Ukrainian equivalent of the police) is widespread: arrest without an attorney, forced labour of detainees (who are made to wash cars or clean militia premis-es), indirect fines like having to pay for petrol for militia cars. z Official stereotypes also lead to
breaches of human rights: many
Focus
Assessment Results:
New Vulnerable Groups and New Strategies
Sex workers and drug users involved in a PAR project in Mykolaiv
Focus
occasional drug users and people living with HIV are fired from work as a result of staff reduction or a technology upgrade. This can push people with occasional drug use to more frequent use and drug dependency.
Of the specific local nuances char-acterising the most vulnerable groups, we would like to underline the following:
z the assessment identified new groups vulnerable to HIV and circumstances which increase the risk of contracting HIV. Students during exams start using drugs intensively to reduce emotional and psychological pressure; there is an analogous situation in the army. Musicians and artists use drugs to increase their creativity. Members of the militia some-times start using drugs because they have easy access to them. Rural teenagers become drug couriers when entering city high-er educational establishments; their level of knowledge about HIV/AIDS is very low and the additional income allows them to try drugs. Men from the country-side coming to cities to trade goods use the services of female sex workers who work on high-ways and use drugs.
z The knowledge and skills of drug users could be influenced to a great extent by nurses from in-patient departments of drug addiction treatment clinics who, over ten to 14 days or more, have the chance to communicate with people vulnerable to HIV around the clock.
Apart from subgroups at especial-ly high risk, the assessment revealed additional vulnerability factors:
z in some regions (Western
Ukraine, Crimea) it is especially important to develop strategies that take into account cultural and ethnic factors of different nationalities inhabiting the same
territory. These factors can either contribute to or seriously hinder prevention programmes.
z Many drug users mentioned the difficulty in getting an erection as a major barrier to condom use, and therefore as an additional factor for contracting HIV. The assessment recorded many community myths and allowed an estimation of their impact on vul-nerability. Among them: if an HIV-positive mother bears a non-infect-ed child, the child will never con-tract HIV even when injecting drugs; injecting heroin users are not real drug addicts (those using home-made opiates) and are not at risk from HIV.
Knowledge of group mythology is especially important for organising information strategies and individ-ual counselling for project clients.
What did NGOs gain from the PAR?
z Contacts with target groups.
Some NGOs found new volun-teers from among these groups; z a new individual approach to
sub-groups;
z fresh decisions leading to new types and technologies of service provision, which it is hoped will considerably improve programme efficiency;
z the PAR strengthened the work of organisations with a foundation in HIV prevention. They had instinc-tively found the right track; now the PAR results can justify their work so far and guide their future activity, while less-experienced organisations have a solid base on which to build their strategy.
We would like to thank all who took part in the Participatory Com-munity Assessment and Response on the HIV/AIDS epidemic in Ukraine.
Ludmila Shurpach, Vyacheslav Kushakov
The International HIV/AIDS Alliance organised a joint session with the Centre for Research on Drugs and Health Behaviour, Imperial College, at the 13th International Conference on the Reduction of Drug Related Harm in Ljubljana, March 2002. The session, entitled Participation in Practice: Recent Developments in Assessment Methodology, was devoted to assess-ment and response to the HIV epi-demic among injecting drug users.
D
espite the growingrecogni-tion and wide inclusion of the concept of participation in government and donor pro-grammes or strategies, increasing involvement and participation of communities is still a relatively recent development. In the field of situation assessments (and respons-es), the theoretical frameworks stress the value of participation, encourage participatory approaches and admit potential influence of the users' involvement and empower-ment. But in practice, this participa-tion is very difficult to achieve.
Firstly, programme implementers tend to interpret community involvement as involvement of all 'stakeholders' — organisations and groups interested in and capable of influencing the situation with drug use and HIV in a particular locality. Because the directly affected com-munities, in our case injecting drug users, are considered alongside all other stakeholders, in most cases their voices become totally lost in the chorus of 'more respectable' community groups like government agencies, funding organisations, medical professionals, educators and police.
Secondly, practitioners face a challenging task in applying the principle of participation of
vulner-Participation in
Practice
able and affected communities. Well-elaborated practical technolo-gies are needed to realise such par-ticipation in the field and ensure it plays a truly productive role within the response to the epidemic. The growing experience of local teams, international consultants and re-searchers involved in conducting assessments, transforming findings into project design and following project implementation not only practically proves the importance of participation and involvement but also helps identify appropriate approaches and technologies to make it happen.
The Alliance has developed a draft toolkit, Participatory Assessment and Response, or PAR, for putting this theory into practice in participatory assessments among injecting drug users. The toolkit, which has been tested in several countries of Asia and in Ukraine, is based on the Rapid Assessment and Response (RAR) guidelines devel-oped by the Centre for Research on Drugs and Health Behaviour (Imperial College) for WHO, and acknowledges the huge contribution Rapid Assessment has made to launching appropriate responses to HIV around the world.
The PAR approach proposes sev-eral additions and changes to the assessment methodology and process. Generally, the methodology proposed by the Alliance relies on NGO staff and community members to implement the assessment and ensure that findings are applied. Community members take active part not only in the collection of information, its interpretation and consequent analysis, but in using findings to develop appropriate activities to respond to identified needs and problems.
To ease the process, the methodol-ogy employs a set of simple partici-patory tools particularly appropriate for stimulating discussion of sensi-tive issues that are unlikely to be
sufficiently explored through con-ventional social research methods.
The assessment of community needs is not limited only to those the assessment team consider directly relevant to HIV/AIDS and drug use. Use of tools can often demonstrate the relevance of needs that would be otherwise overlooked. Moreover, addressing seemingly unrelated community needs can substantially help to introduce the behavioural patterns necessary for effective prevention.
Another consideration is the role of addressing community needs in ensuring rapport and increasing ownership, participation and involvement of communities in project design and implementa-tion. Widely-acknowledged links between prevention, care and impact mitigation activities have implications for the menu of needs which should be considered by assessment teams and project designers.
Finally, participatory methodolo-gies can and should be used as a powerful monitoring tool, substan-tially contributing to further project improvement. Projects that have managed to ensure an appropriate level of community involvement already benefit from regular updates on the rapidly changing sit-uation with drug use provided by community members.
Participatory Assessment me-thodology is complementary to the Rapid Assessment and Response, and is particularly useful for the development of specific activities at local level, as well as for review and improvement of existing responses. In the international community involved in HIV/AIDS work, there is some discussion on further devel-opment of assessment methodology in terms of whether to move towards more standardised tech-niques or towards more culturally sensitive adaptations of a basic package. Standardisation may allow
the comparison of responses to the epidemic across the world, facilitat-ing decision-makfacilitat-ing of governments and donors. It also helps to replicate successful models of interventions and can shorten the time necessary to introduce new programmes. But replication may also have a poten-tially debilitating effect on projects, paralysing the indigenous search for specific solutions to address the needs and problems of local commu-nities.
The value of local adaptation of standard methodology is generally acknowledged. But Participatory Assessment and Response is not just a local adaptation of the RAR approach. It contains an innovative methodology based on the partici-patory approach and tools. It also has strong potential for increasing co-operation between researchers and practitioners assessing HIV/AIDS and drug use-related problems and needs, and developing and implementing appropriate responses. PAR methodology may be a valuable contribution to fur-ther development and elaboration of 'classic' assessment approaches, including WHO RAR methodology.
Vyacheslav Kushakov Programme Officer for Eastern Europe and Central Asia International HIV/AIDS Alliance
Ukrainian experience of the PAR has been documented in a method guidance available (in Russian) at www.aidsalliance.kiev.ua. Experiences from other countries are also being documented and will inform a revised version of the toolkit.
At First Hand
A
tour around Luhansk withRoman Apostoli, the head of the Luhansk charity foun-dation Anti-AIDS, encompassed clas-sical and underground culture, legal and illegal business. On one side, the Russian drama theatre, on the other, sex workers along the roadside. Here the shoe factory, there, the places for selling illegal drugs.
A map of Luhansk produced for Anti-AIDS is yet more unorthodox. The authors have drawn in student hostels, the city's drug addiction treatment clinic, the many points for selling and preparing drugs, and a 24-hour chemist — the source of clean needles for injecting.
The maps have been produced by focus groups taking part in the Participatory Community Assessment and Response carried out by Anti-AIDS, examining for the first time the real sit-uation among drug users in Luhansk.
Since 1998, Anti-AIDS has been working with young people and sex workers, but there are no existing programmes for drug users in Luhansk. Therefore the work the foundation is doing is largely unprece-dented, and the team had to start from scratch finding volunteers and sources and testing assessment meth-ods. Working with Mr Apostoli is a teacher, a psychologist and five vol-unteers (including the project manag-er Bohdan Lucy), four of whom are presently injecting drugs.
Most of the volunteers are 'gate-keepers,' which a successful PAR must identify and enlist, and they are clearly interested in and enthusiastic about what they are doing. “The most important point is their desire to work,” says Mr Apostoli. “Right from the beginning we wanted active drug users, because they can communicate on the right wavelength, it's their own culture and they think alike.”
The Luhansk team reached out to communities by ‘snowballing’. After Bohdan Lucy was recruited by Apostoli
when he was a patient at the Luhansk drug treatment clinic, he invited his friend Yuri to join the project; Yuri then offered his friend Sasha alcohol wipes as a way of attracting his inter-est, and got him to enlist as a volunteer. Sasha's girlfriend Yevgenia was drawn into the project too — she is the team's link with female drug users.
Working with active drug users has its problems. Bohdan says he found it very hard to give the project the dedi-cation it needed because he was used to such an irregular lifestyle. The team leaders had to adapt their approach to the haphazard schedules of drug users, both in conducting focus groups and in managing the volunteers.
Keeping the membership of focus groups constant was a challenge, and asking the participants to work together on some of the materials problematic — the groups were convinced, for example, that their maps of drug points would end up in the hands of the militia. In the end volunteers produced a very rough draft during focus group meetings in cafes, and copied and enlarged it later. Focus groups were interested in map-ping and diagrams, but anything which required more creative and concentrat-ed input was not very realistic.
Working together towards solu-tions also came only gradually. At first respondents would tell volun-teers their life stories, or offer advice. Using photographs of the Alliance PAR training to introduce the project and its aims proved effective in encouraging a joint approach. The team are especially pleased with the material they have gathered about the peculiarities of drug supplies in Luhansk, the way drug users spend their day, and the location of places for selling and preparing drugs. From this focus groups have worked out together where and when a needle exchange would be most effective, fitting into the traditional lives and habits of drug users so that life becomes a bit easier for them.
It was only because of their close identity with the target groups that the PAR team managed to get such information. One of the volunteers, Anton, has quit injecting drugs, and although he gets on well with the other volunteers he is not yet trusted enough by the target community to be able to lead a focus group, where some members “don't do anything else except take drugs, and they don't talk to anyone except other drug users,” as Yuri says. Even when the leaders were absolutely familiar, it was still difficult to get users to overcome their fear of authorities.
“It's all new to them, they don't know how, what, where,” says Sasha. “We try to explain what we're doing, and some take it ok, and some think we're from the militia. They want to tell us something, but they're scared.” It is not only caution which makes people using drugs unwilling to talk. They are reluctant because they can't see the point. With no pro-gramme yet in place to offer help or support, most can't believe such a programme is possible, or that they are even worth such a project.
“It isn't just non-drug users having such a bad attitude to drug addicts,” Bohdan explains, “it's our own atti-tude. We feel, no one needs me, I'm not just finished, I'm an idiot.”
Some drug users say they would use a needle exchange scheme if it made it easier to get clean needles and thus avoid possible infection, but the main attraction seems to be the hope that it might provide a haven to go to, someone to talk to, or the pos-sibility to get off drugs.
“They want someone they can appeal to, who will accept them and talk to them normally,” says Yuri Ryaplov, co-founder of Anti-AIDS. “Somewhere they can meet and talk and feel safe and at ease, sharing experiences and possible solutions.”
Lily Hyde
Communicating on the Right Wavelength
The Open Society Institute, New York/International Harm Reduction Development programme, in co-oper-ation with the Renaissance Foun-dation Kyiv and the International HIV/AIDS Alliance conducted an assessment mission in October 2001 to examine the need for substitution therapy in Ukraine to tackle opiate addiction and HIV, and explore the real possibilities for its introduction. Here we summarise some of the main findings and recommendations of the assessment.
A Key Component of the Harm Reduction Approach
In Ukraine at present most harm reduction projects consist only of needle exchange, with some peer education and outreach. Drug users reached by the projects are given some possibility to inject illicit drugs safely. But if they want to escape the crime and police harass-ment surrounding illicit drug use, give up drugs or reach regular medical services, few Ukrainian harm reduction programmes can help. At most, they can refer clients to paying state detox services which are too expensive and inef-fective for many.
Detox services have been shown to have little impact on long-term drug use. Rehabilitation is often organised on rigid, prison-like lines.
A third option known to be effec-tive for opiate addiction is substitu-tion therapy.
Substitution therapy is an intrin-sic component of the harm reduc-tion approach to illegal drug use.
This treatment abandons the idea that drug addiction can be 'cured' and that total abstinence is the only outcome of successful therapy. Instead it looks at drug addiction as a kind of chronic disease. Sometimes it can be cured, but often it is like diabetes or a heart condition, need-ing permanent treatment to keep it under control so that the individual can function in society.
Under a substitution treatment pro-gramme, people addicted to opiates receive a replacement drug which has no serious ill-effects on health, is acceptable to them and is con-trolled by de-tailed medical guidelines. The drug programme, usually adminis-tered by public medical services, should go hand in hand with
psy-chosocial services often run by NGOs. Substitution therapy reduces health risks like HIV by removing the need to inject drugs and by bringing clients into regular contact with health services. It is especially important for HIV-positive drug users, as it enables them to adhere to anti-retroviral treatment regimes. Substitution therapy alleviates social problems by helping drug users to function in wider society, escaping the crime associated with illicit drug use, and by reducing the market for illegal drugs.
Ukraine, like practically all the newly independent states, has little experience of substitution therapy. However, more and more officials and experts concerned with the field of drugs and HIV support the introduction of substitution treat-ment in order to tackle addiction and the HIV epidemic.
The Current Situation Concerning Substitution Therapy
Since 1998 when short-term sub-stitution therapy became legal in Ukraine, eight regions have started to use buprenorphine for prolonged detoxification of opiate users over about three months. The number of
Overview
From Beyond the Pale:
Substitution Therapy in Ukraine
A nurse administers injectable buprenorphine to a client of Sociotherapy drug addiction treatment clinic, Kyiv
Members of the substitution therapy mission at the Ukrainian Ministry of Health, Kyiv
V. Suvorov