Completed projects | Ukraine | Russia | Back to Work


All Ukrainian Network
Sergey Fedorov (Odessa), Vladimir Zhovtyak (Poltava), Olena Panfilova (Kyiv) and Artur Ovsepyan (Odessa). Members of the All Ukraine Network's Co-ordination Council

After contacts made at our 2000 Prague Conference two visits were made to Ukraine by a team. Meetings and negotiations were held with the All Ukrainian Network of People Living with HIV and AIDS. From these meetings a two-year capacity development programme was devised. This includes elements of training (7 weeks for 20 people), mentoring, and core funding of a central office in Kyiv with 5 staff. There will also be a pan-Ukrainian PWA conference in Crimea, September 2003.

We would like to acknowledge the support of the British Council and the EU delegation in making our visits useful and fruitful and to CAP for providing the translator.

ECPP – Capacity Development Project of the All Ukrainian Network of People Living with HIV and AIDS.

Problem Statement

The All Ukrainian Network of People Living With HIV and AIDS, (AUkN) has emerged, from the November 27-29 (1999) the Second All Ukrainian Conference of HIV-Service Organisations and People Living With HIV/AIDS which took place in Kyiv. At the conference a working meeting of People Living with HIV took place. It was agreed to found a National Network.

It is the only network of HIV positive people in the country. It acts as a focus for national advocacy campaigns to implement national policy and good practice guidelines at a local level. Monitoring health and social care for individuals. E.g. preventing medics charging pregnant women for drugs that are supposed to be free at the point of delivery. A successful network can bring positive changes to peoples' lives, faster, more effectively and efficiently than many other forms of organisation.

The leverage of investing in a network organisation is inestimable. With limited resource implications many thousands of individuals' lives can be improved. The activities jointly agreed and entered into between the AUKN and ECPP were met by the agreed aims of the AUkN, which will also added and complemented other larger scale projects being implemented in Ukraine.

The network is now well established and is gaining new members. Initially, it lacked the professional management experience of how to run an organisation, and a network in particular. An organisation moving from informal links and well-motivated activism needs to become professional at its core of operations. Thus it can develop strategies, fundraise, and monitor its own work and provide effective reporting to its external and internal constituents. The ECPP spent many days with the Management Committee of the Network where the project was jointly agreed. It met their own self-perceived needs.

In Ukraine, it is unlikely that there will be universal access to HAART in the near future. Due to this the members of the network will in the next few years start to experience illness, burnout and multiple bereavement. The current committee of the AUkN understands this reality and understands the need to develop strategies around this difficult issue. It is our experience at ECPP of managing a network organisation of HIV positive people in the pre-HAART era in the UK, that enabled us to offer a unique insight into the training and developmental needs of the PWA Network in Ukraine.

The Network has over 200 members in all Oblasts.

Why the Ukraine now?

The Ukrainian government approved a “National Reproductive Health Programme 2001-2005” and was finalising a Plan of “National Response to HIV/AIDS 2001-2003”. In the former, HIV prevention in the form of the Prevention of Mother to Child Transmission seeks, as core objective to involve NGO’s. The National Response to HIV and AIDS in the Ukraine 2001-2003 clearly identified the crucial role of the NGO. People with AIDS networks can have and do play a vital role in the epidemic in many parts of the world. The timing of this project fitted in with the key activities already outlined and most crucially in the implementation of the first National Plan based on UNAIDS Guidance on Strategic Planning. It was important to invest in the development of the AUkN so that it was able to respond to the call for their active participation in this national process. This proposal enhanced the role and effectiveness of the AUkN at a crucial and opportune time in the development of large-scale national and international programmes in the country, including the EU and USAID and the World Bank loans in this specific area.

Political recognition of Ukraine Epidemic

In November 2000, the Ukrainian Government recognised HIV/AIDS as an epidemic and national emergency. Following the Edict of the President of Ukraine: "On emergency measures for prevention of the spread of HIV-infection and AIDS", a State Committee on HIV/AIDS was established. Chaired by the Vice-Premiere-Minister of Ukraine, M.G. Zhulinsky and an HIV-positive person. This requires the strengthening of medical care for people that are affected by the epidemic. The main executors of this sector were determined: Ministry of Health, Academy of Medical Science and National Academy of Science of Ukraine. The responsibility of the Ministry of Health is to develop the Programme of Prevention of HIV-infection/AIDS in Ukraine for years 2001-2003 (4th National Programme), and to present it to the State Committee for approval.

Assessment of epidemiological situation – Ukraine

HIV testing and cases reporting the number of official diagnosed infections increased from 398 cases for the whole period 1987-1994 to 1,490 in 1995, 5,400 in 1996 and a total of 23,315 in 1997-1999. The highest rates of reported HIV infections were initially found in the regions of Odessa and Mykolayev, but cases are now reported from all 27 Oblasts of the country.

HIV prevalence: Prevalence is mostly estimated from the screening programmes. Sentinel surveillance was conducted April 1997. STD’ s: Incidence of syphilis cases increased dramatically from <10 cases per 100,000 in 1990 to 118 per 100,000 in 1995. In some regions this rate reached 220 per 100,000. Over 60,000 new syphilis cases were reported in 1995 alone. The diffusion of the epidemic through heterosexual contact is difficult to assess. Proportions of HIV positive tests among pregnant women in Odessa and Mykolayev have reached levels of western European cities. However, because the mode of transmission is not available in most cases it not possible to determine to what extent pregnant women have been infected through IDU or other means.

In 1999 and during the first quarter of 2000, UNAIDS and WHO worked closely with the national governments and research institutions to recalculate current estimates on people living with HIV/AIDS. These calculations are based on the previously published estimates for 1997 and recent trends in HIV/AIDS surveillance in various populations.

Estimated number of adults and children living with HIV/AIDS, at the end of 1999:

Adults and children 240,000
Adults (15-49) 230,000
Adult rate (%) 0.96
Women (15-49) 70,000
Children (0-15) 7,500

Estimated number of deaths due to AIDS: Cumulative deaths 9,400 in 1999.
Although the data is unreliable, injecting drug users form the majority of HIV positive people. Female sex workers are known to form a significant part of this group and many Oblasts report an increase in mother to child transmission (MTCT), and heterosexual transmission by sex. The majority of HIV positive people are under 30.

Objective of the Project:

To increase the capacity of the AUkN to become a self-sustaining network, and be of direct benefit to the improvement of people living with HIV and AIDS in Ukraine. The AUkN members will be better prepared and capable of organising and running a network.

A network-wide skills audit was conducted, to ensure the best skilled people are used appropriately for specific tasks, thus making them more effective and efficient. With these skills the AUkN is able to manage itself, produce its own plans, define budgets, write effective fund-raising proposals, identify and approach fund-raisers, manage themselves as individuals living with HIV and AIDS, and other volunteers, developing saleable skills and market them, monitor its own work and evaluate its performance and report the same to donors, members and other stakeholders. Thus making them more effective and efficient users of their own resources.

Description of the Project:

Office set-up & staffing

We stablished an office for the network in Kyiv. There is a Director, a Network Co-ordinator (& development), a Campaigns Manager, an Accountant and Administrator.

Some of the methods used as part of the programme

Training the trainers

The whole training programme is being delivered in the context of enabling those receiving training to be able to train others. This enables those selected for each technical training workshop to be able to train others in their own self-help groups.

Sharing of experience

This occurs with each training activity, it is an adjunct to and reinforcement of the technical training. It helps embed knowledge gained with the sharing of the experience of others in previous activities, successful or not. A sharing of experience by people living with HIV and AIDS, helps end isolation and engages feeling of hope and ability to respond. It also enables people to recognise and identify with positive role models instead of stereotypes of AIDS=DEATH.


This is a positive reinforcement of, and practical application of knowledge received in the technical training and helps reinforce the sharing of experience. A member of the European Coalition is be available for specific and periodic mentoring visits to Ukraine. The Mentoring approach helps build confidence among those trained to ensure effective dissemination of knowledge acquired.

The specific activities undertaken and to be undertaken

Management Training

A series of four, five-day training programmes. There will be specific work with the Committee Members of the All Ukrainian Network on management issues, and the Regional Representatives, this will include: baseline management techniques including planning, budgeting, cash flow forecasts, fund-raising, marketing, proposal writing, staff development and recruitment, volunteer’s recruitment, retention & development, self-development and management to avoid burnout; assessment of skills & abilities, monitoring and evaluation of activities against strategic and other plans, including reporting and meeting reporting requirements, deadlines, etc.

Technical training

A series of three, five-day training sessions on:


How to access antiretroviral medication and opportunistic infection medications, immunology, treatment adherence, treatment side-effects management. Adherence and effects of triple or quadruple combination HIV antiretroviral therapy is a vital pre-cursor to being able to lobby for the treatments themselves, and then working with both patients and treating physicians in the effective usage of these treatments – avoiding the rapid emergence of drug resistant HIV. This session is of vital importance if the Government funds the distribution of complex anti-retroviral therapy. Many Clinicians, even in Western Europe often depend on activists to provide them with best practice guidance in accordance with international standards (such as the British HIV Association Guidelines), and evidence suggests that this will more often than not be the case in Ukraine. Where medical practitioners often fail to put into practice their own government’s guideline on treatment issues.

Complementary medicine, diet and nutrition

Recognising that few people will receive ARVs (compared to the numbers infected), the use of complementary medicine, including herbalism, and the vital importance of good diet and nutrition, will be dealt with in this training session. These are all “self help” techniques, that can aid living well with HIV and prevent the onset of AIDS.


Recognising that few people will receive ARVs (compared to the numbers infected), and that Ukraine already has a large number of HIV positive children. A training session on MTCT, diet, nutrition and the side-effects management of ARV’s in paediatric AIDS will be conducted.


An All-Ukraine Conference of 120 to be held in Crimea in September 2003.

Evaluation Plan:

After each training session a half-day evaluation combined with an evaluation training session is conducted with Veema Lakumulani of the British Council (as part of the BC’s contribution). These sessions are used as the basis of the evaluation of the training itself and to amend the sessions as we proceed.

The AUkN as part of the management training received a formal module on monitoring & evaluation techniques. They conduct formal reviews of all their activities as part of their growth and development. This forms part of the end of project formal evaluation.

A 360-degree evaluation is being conducted, by asking all the other “players” in Ukraine, to evaluate the success of the capacity building programme.

External evaluation by Charities AIDS Foundation (purchased by the Elton John AIDS Foundation) is also being conducted.

A presentation by the All Ukrainian Network of People Living with HIV and AIDS. (pdf, 239 kb - you may need to download Adobe Reader if you do not have the current version)


This publication has been produced with the assistance of the European Union. The contents of this publication is the sole responsibility of ECPP and can in no way be taken to reflect the views of the European Union.

EU Website


Russian Network of People Living with HIV & AIDS
Members of the Board of the Russian Network of People Living with HIV & AIDS

In association with the Elton John AIDS Foundation, the ECPP made two visits to Russia to assess the needs, capacity and viability of the nascent Network of People Living with HIV and AIDS. To ascertain, if, with the right support, could mobilise to become effective advocates for positive change in the life of PWA’s within Russia.

A capacity development programme was formulated in 2002. Since, an office has been set up in Moscow with three full-time staff. The Network is expanding its activities, which include mobilising PLWAs into self-help groups in other oblasts.

Russian PWA network

Since 2001, the ECPP had been in conversation with the Russian Network and had had several meetings in Moscow and at the Barcelona XIV International AIDS Conference, in July 2002.

Within Russia human rights is still a marginal commodity, especially for those people with HIV and AIDS. There is a real fear of disclosing one's status or identity which often dissuades them from seeking professional, social, legal or psychological support.

Bearing this in mind and that the potential need in Russia is greater than that in Ukraine the approach to Russia was seen to be similar (both being ex Soviet in systems) but different allowing for Russia’s size and the lack of political commitment to the issue. Russia currently faces one of the fastest growing HIV epidemics in the world. Since the early 1990s, Russia has experienced a significant increase in HIV infection. While official statistics released at the end of June 2002 put the figure at 201,635, the actual number of people living with HIV/AIDS is estimated to be 5-10 times higher. Vadim Pokrovsky, Head of the Federal AIDS Centre AIDS believes that the real figure exceeds 1 million and the Ministry of Health states the number of those living with HIV/AIDS will reach 5m by 2005. 80% of currently registered cases of HIV involve young people aged from 15-30 years. In the ten regions where prevalence is greater than 200 per 100,000 total population, rates among males and females in this age group exceeds 0.5% and 1% respectively.

The objective of the project

To increase the capacity of the Russian Network to become a self-sustaining organisation.

Expected outcome

It is envisaged that the Network will be able to manage itself, produce its own plans, define budgets, write effective fund-raising proposals, identify and approach fund-raisers, manage themselves as individuals living with HIV and AIDS, and other volunteers, monitor its own work and evaluate its performance and report the same to donors, members and other stakeholders. It will be able to professionalise its advocacy on behalf of PWA’s in Russia.

Achievements to date

The Coordination committee is:

Regional organisations:

The office is at:

5 Ordjonikidze Street
Building 3
Russian Federation

The phone number: ++7 (095) 974 7723

It has appointed two members of staff:

The Web site was set up at: plwha

E mail contact can be made :

Back to Work

We completed a joint contract with the EU (funding for 2000/2002) in Association with AIDES Federation Nationale, France, on a project entitled “European Back to Work Project, Raising Standards at Work for People Living with HIV and AIDS”. The project proceeded according to plan with activities involving the UK Coalition, THT-Lighthouse, The Globe Centre, Positive Women, HIV Vereinigung Nederlands, Centre for Inspirational Living (Greece), LILA (Italy), F.E.E.S (Spain) and Abraco (Portugal).



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