Analytical ReportBased on the Results of the Qualitative Study:Access of Members of the Risk Groups (Youth, Injection Drug Users, Commercial Sex Workers, Men Who Have Sex with Men, Prisoners) to Prevention, Treatment, Care and Support Related to the HIV/AIDS Epidemic in UkraineThe report is prepared by the Association of Substitution Treatment Advocates in Ukrainewithin the framework of the project of the Eurasian Harm Reduction Network (EHRN) "Achieving Universal Access: Supporting Community Sector Involvement and Advocacy" This project is supported by the International Council of AIDS Service Organizations (ICASO) within the framework of the global process of Universal Access.Ukraine, 2010^ Table of ContentAcknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 List of Acronyms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Overview of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6Section 1: General Information on the Situation in Ukraine . . . . . 10_______ Treatment . . . . . . . . . . . . .. . . . . . . . . . . . .. . . . . . . . . . . . 12 _______Prevention. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 _______Human Rights. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Section 2: Community Sector Involvement . . . . . . . . . . . . . . . . . . 16Section 3: Universal Access. Agreed Target Indicators . . . . . . . . . 18Section 4: Achievement of the Universal Access Targets. . . . . . . 22Resume . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25Annex 1: Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26^ AUTHORS AND ACKNOWLEDGEMENTSAssociation of Substitution Treatment Advocates of Ukraine (ASTAU) © is an organization of the IDU/SMT community, the mission of which is to preserve, improve and implement humane, evidence-based medical and social programs using harm reduction approaches in order to improve the quality of life and protect human rights./ www.astau.org.ua.^ Eurasian Harm Reduction Network (EHRN) is a non-governmental organization, the mission of which is to reduce harm from the drug use with the aim of health preservation and support and protection of human rights at the individual, community and general population level / www.harm-reduction.org.^ International Council of AIDS Service Organizations (ICASO) is a council, the mission of which is to mobilize and support various non-governmental organizations in order to create the effective global response to HIV/AIDS / www.icaso.org. Coordinator of the working group in Ukraine – Olga Belyaeva. ^ Desk research and interviewing – Vadym Aftandilyants, Professor of Economics in Kyiv National University of Technology and Design, sociologist at Mediatraining.Consultant – Valentina Ruchkina, patent attorney of Ukraine (license #158), representative for intellectual property issues. The qualitative study was assisted by national experts and representatives of communities working in the area of Universal Access provision to the key populations. We appreciate the valuable advices on the report structure and the assistance in choosing the respondents selection criteria, provided by Irina Borushek, Oleg Galaktyonov, Zorian Kys', Irina Mishyna, Yelena Polukhinskikh, Sergey Stratulat, Igor Spinul. We deeply appreciate the complicated questions and help in finding the answers provided by the participants of the consultative meetings, namely: Lidiya Andrushchak, Sergey Votiagov, Alexandra Gurinova, Konstantin Dumchev, Denis Poltavets, Mirzakhid Sultanov, Liudmila Shurpach, Raminta Shtuikyte. Association of Substitution Treatment Advocates of Ukraine (ASTAU) would like to thank Eurasian Harm Reduction Network (EHRN) for inspiration as well as for the technical and financial assistance in creation of this publication, provided within the framework of the project "Achieving Universal Access: Supporting Community Sector Involvement and Advocacy". Text of the report may be found in Ukrainian, Russian and English on the web-site www.astau.org.ua Recommended citing format: © АSTAU (2010). "Access of Members of the Risk Groups to Prevention, Treatment, Care and Support Related to the HIV/AIDS Epidemic in Ukraine." Authors: O. Belyaeva, V. Aftandilyants. ASTAU: Dnepropetrovsk/Kyiv, Ukraine. Views and opinions presented in the report may differ from the views and opinions of the EHRN or ICASO.^ List of AcronymsICASO — International Council of AIDS Service Organizations ARV treatment — antiretroviral treatment AUCO — All-Ukrainian Charitable Organization HIV — human immunodeficiency virus WHO — World Health Organization GFATM (GF) – Global Fund to Fight AIDS, Tuberculosis and Malaria MARPs – most-at-risk populations VCT — voluntary counseling and testing EU — European Union FSWs — female sex workers SMT — substitution maintenance treatment STIs — sexually transmitted infections PCC — programs coordination council LGBT-community — lesbian, gay, bisexual and transgender community PLWHA — people living with HIV/AIDS PLWH — people living with HIV ICF — international charitable foundation MIA — Ministry of Internal Affairs MH — Ministry of Health MES — Ministry of Education and Science MSM — men who have sex with men NGOs — non-governmental organizations NOP – national operational plan UN – United Nations IDUs — injection drug users IDU-PLWH — injection drug users - people living with HIV PMTCT — prevention of mother-to-child transmission of HIV PIS – patrol and inspection service of law-enforcement agencies CSWs — commercial sex workers ROP – regional operational plan MM — mass media AIDS — acquired immune deficiency syndrome UNGASS – United Nations General Assembly Special Session SSFCY — social services for family, children and youth CD4 – defining immune status of HIV-positive person TB — tuberculosisUNGASS report – National Report on Monitoring Progress Towards the UNGASS Declaration of Commitment on HIV/AIDS in 2008 -2009, ICF “International HIV/AIDS Alliance in Ukraine”, MH, UNAIDS UNAIDS — Joint United Nations Program on HIV/AIDS^ Overview of the StudyThe commitments made by the countries at the 2005 World Summit and the Gleneagles G8 Summit on the universal access created momentum to scale up comprehensive prevention, treatment, care and support within the intersectoral national response to HIV/AIDS. On June 2, 2006 at the 87th plenary session of the United Nations General Assembly the Member States adopted a Political Declaration on HIV/AIDS where countries committed, among other things, to set ambitious targets by end of 2006 to scale up the response toward the goal of achieving universal access by 2010. This process of setting targets was to be transparent and inclusive of civil society and other stakeholders. In 2010-2011 UNAIDS will be organizing an intersectoral review of the Universal Access to evaluate progress of the countries in achieving the national targets, identify challenges and obstacles and agree on what has to be done to achieve Universal Access and the Millennium Development Goals. Similarly, in June 2011 it is likely that governments will be required to report on progress in their AIDS responses, particularly in line with universal access commitments. The project "Achieving Universal Access: Supporting Community Sector Involvement and Advocacy" is implemented by the International Council of AIDS Service Organizations (ICASO) together with its Regional Secretariats and partners. The goal of the project is to strengthen the leadership and involvement of key populations into monitoring and making decisions related to national HIV responses and to influence national target setting and review of progress in achieving Universal Access, particularly in the context of prevention among key populations.The project stipulates 3 levels of activities: Preparing national reports and conducting advocacy activities in participant countries. Preparing regional reports and conducting advocacy activities (taking into account the contribution and project activities at the national level). Preparing global report and conducting advocacy activities (taking into account the contribution and project activities at the national and regional levels). Eurasian Harm Reduction Network (EHRN) is a regional partner of the ICASO coordinating the activities concerning the project in Eurasian region. In Ukraine the partner of the project is the Association of Substitution Treatment Advocates of Ukraine. Active participants are members of such communities as IDUs, CSWs, MSM, prisoners, PLWH, and youth.The objectives of the study in Ukraine were: to assess the involvement of MARPs into the Universal Access provision process; to review the data and the results of analysis of the epidemic and related needs (particularly regarding the key populations and prevention); to identify gaps in the targets set and in the relevant achievements; to monitor and document the progress in achieving the target indicators.The following questions were to be answered in order to meet the objectives of the study: Has the public sector (including key populations) been involved into the Universal Access provision processes? Are the Universal Access target indicators (and the process of their review) realistic, comprehensive and ambitious, and have they been developed taking into account all the aspects of Universal Access provision and the interests of key populations? Where is the country in reaching the Universal Access targets (with a particular focus on targets for prevention and key populations)? What needs to happen next for the Universal Access to be achieved?In the course of the study the following tasks have been completed: Review and analysis of literature, which helped forming a better understanding of the HIV/AIDS epidemiological situation in Ukraine. Interviewing methodology was adapted (see the Annex). Seven in-depth interviews with national experts were conducted, which helped improve understanding of various aspects and local specifics of the Universal Access. Quotations are included into the Report. 24 interviews were conducted with members of the key populations who provided information on the accessibility of HIV/AIDS prevention, treatment, care and support. Quotations are included into the Report. The respondent selection criteria are listed in the Annex. Analysis of the received information was conducted and the Report was prepared.The Report does not aim to exhaustively analyze all the issues related to the Universal Access or to come up with all the solutions. Only two areas were chosen for the study: HIV prevention and access to services for key populations.SummaryBackground of the AIDS epidemic in Ukraine and analysis of the response.Since the first case of HIV infection was registered in Ukraine in 1987 and up to the 01.07.2010 there were 171,661 cases of HIV registered among Ukrainian citizens, including 33,937 cases of AIDS and 19,389 deaths caused by AIDS-related illnesses. During the first six months of 2010 the incidence of HIV has increased by 6.0% as compared to the previous (2009) year1. During the whole period of epidemiological surveillance of HIV in Ukraine the numbers of persons dying from AIDS-related illnesses have been increasing – from 2,188 in 2005 to 2,710 in 2008. In 2009 for the first time there was a decrease of the AIDS-related deaths as compared to the previous year – from 2,710 to 2,5912. In 2009 19,840 new cases of HIV were registered in the country (43.2 per 100 thousand population). And though starting from 1999 the number of registered cases of HIV increases annually, the increment of this number gets lower: 16.8%, 10.5%, 7.6% and 5.7% respectively.Estimated data on the size of the risk groups and PLWH, confirmed by the National Council on TB and HIV/AIDS as of 10.09.20093: IDUs – 290,000; CSWs – 78,000 (it is important to notice that the number does not take into account female IDUs); clients of CSWs (men) – 234,000; MSM – 95,000; prisoners – 145,000 people.During the last four years (2006-2009) the number of the registered new cases of HIV among IDUs remained virtually unchanged and amounted, on the average, to 7,088 people annually. Ukraine does not register cases of HIV among CSWs because it is difficult to detach this group from all the cases of sexually transmitted HIV infection. However, the data received via sentinel epidemiological surveillance indicate the wide-spread and increasing prevalence in this population.In 2009, sexual transmission accounted for 44% of cases, while parenteral transmission – 36%. In the first six months of 2010 the percentage of persons infected through injection drug use kept on decreasing and amounted to 34%4.The increase of heterosexual transmission rate and the number of HIV-infected women of fertile age has induced gradual increase in the number of children born by HIV-infected mothers. For example, in 2007 the rate of mother-to-child transmission of HIV was 6.2%. Despite certain progress achieved in prevention of mother-to-child transmission, the total number of children with confirmed HIV-positive status keeps increasing5.Due to the absence of reliable evidence indicating sexual transmission among the general population being the main driving factor of HIV transmission, Ukraine is at the moment one of those countries where epidemic is concentrated (512.7-223.7 per 100 thousand population) in risk groups6. Response:- in 2009, the services of harm reduction programs reached: 150,000 IDUs (52% of the estimated number); more than 25,000 of CSW (36.2% of the estimated number); more than 28,000 of prisoners (12.31% of the estimated number) and more than 13,000 of street children; - coverage of HIV antibody test grows every year: in 2009, the quantity of screening tests has increased by 136,000 (4.2%) in comparison with 2008, partially funded from local budgets; - the coverage of adults and children with advanced HIV with ART is growing: 2006 – 27%, 2007 - 35%, 2008 – 40% (10,629 persons), 2009 - 48% (15,871 persons); - evidence of equal access to the ART: in 2008, 52% of women received it, in 2009 – 60%. For men, the rate was 33% and 41% respectively. - percentage of ART coverage for children: 2008 – 90%, 2009 – 100%. - in February 2009, for the first time in Ukraine the Verkhovna Rada of Ukraine adopted the National Program on HIV Prevention, Treatment, Care and Support of HIV-Infected Persons and AIDS Patients for 2009-2013, providing government funding7. 2. Description of the process used to design and agree on the target indicators of the Universal Access. In April 2006, the ‘Road Map on Scaling-up Towards Universal Access to HIV/AIDS Prevention, Treatment, Care and Support in Ukraine by 2010" was created with support from UNAIDS. This Report presents the results of three national consultations held in Ukraine from December 2005 to February 2006. They were dedicated to the issues of the national access to HIV/AIDS prevention, treatment, care and support by 2010. These meetings were attended by over 300 representatives of government organizations (both national and regional), NGOs and international organizations, including over 100 PLWH. The Report was prepared by multidisciplinary working group created under the order of the Cabinet of Ministers of Ukraine and headed by a representative of the MH of Ukraine8.There are national indicators for monitoring and performance evaluation of HIV/AIDS epidemic control (MH Order # 870 dated 28.12.2007; indicators listed in the Order conform to UNGASS indicators9). The Order lists indicators, responsible offices and reporting deadlines. However, we were unable to find any information on the target indicators (i.e. specific quantitative/qualitative indicators) used for monitoring. On February 19, 2009 the Law of Ukraine "On Ratification of the National Program on HIV Prevention, Treatment, Care and Support of HIV-Infected Persons and AIDS Patients for 2009-2013" was adopted. The law contains detailed description of the targets, tasks and measures, responsible persons and funding sources.The target indicators agreed reflect comprehensive nature of the measures taken by different sectors of Ukrainian society in order to overcome the concentrated HIV/AIDS epidemic. The targets imply measures aimed at the key populations.On July 1, 2010 the National Council on TB and HIV/AIDS approved the National Operational Plan (NOP) for 2011-2013 based on the "National Program on HIV Prevention, Treatment, Care and Support of HIV-Infected Persons and AIDS Patients for 2009-2013." Over 100 partners, 50 of them being regional partners, took part in designing the NOP10. The NOP was created on the basis of 27 regional operational plans (ROPs). Based on the regional targets, new quantitative targets for the NOP were set for 2011-2013.11 For example, key indicators in prevention (number of people covered annually) are as follows: ^ Target group 2011 2012 2013 IDUs 154,413 179,944 204,634 CSWs 28,990 36,478 43,400 MSM 28,680 34,270 38,590 Prisoners 46,941 53,393 57,045 PLWH 69,524 78,431 88,769 In the National Program12, the figures of groups ^ IDUs, CSWs, MSM, and prisoners are represented in percentage: 2011 – 40% covered, 2012 – 50%, 2013 – 60%. The estimated number for IDUs group in 2005-2008 – 324,000, starting from 2009 – 290,000 is the recommended figure13. The research showed some inconsistency in official documents defining targets and the level of their achievement. The detailed results of the analysis are described in section 4. ^ 3. Analysis of the main obstacles and challenges to reach the targets by 2010. Community members have noted a variety of problems hindering comprehensive and quality achievement of the goals set. In 2010, the level of criminalization of the users of illicit opiates grew 20 times, which increases vulnerability to rights violation and restricts the access to medical and social programs. Significant level of stigmatization and discrimination of MARPs is still in place. In the country's regulatory documents, the data on HIV/AIDS program implementation are partially inconsistent with the targets set; the exact amount of people needing services is not defined making it difficult to evaluate the progress in achieving the targets. Members of MARPs (IDUs, CSWs, prisoners, MSM) are insufficiently involved in planning, implementation and monitoring of programs. While information is widely accessible, it is noted that young people do not fully understand the threat of HIV infection. Lower accessibility and quality of medical and social services is notable in small towns and villages of Ukraine in comparison to oblast (regional) centers.^ 4. Development of strategies and recommendations to address those obstacles and reach Universal Access by 2015.After the working meeting held on December 22, 2010, MARPs representative discussed the need of bringing in technical and financial aid to create and implement an advocacy program aimed at: Increasing of the level and effectiveness of MARPs involvement into Universal Access provision processes in Ukraine. Significant involvement into organization of transparent and integrated regular monitoring and reporting process for achieving existing and/or revised Universal Access targets by 2015. Better interaction with the UN and other stakeholders at the country (and global) level. Attracting more resources to support MARPs members’ involvement in programming, monitoring, policy- and decision-making.SECTION 1:General Information On The Situation In UkraineOverview of the AIDS epidemic in the country The revised HIV/AIDS estimates show that as of the beginning of 2010, there were 360 thousand HIV-infected people aged 15 and older, living in Ukraine14. These data differ from the official statistics of registered HIV cases – 106,366 persons. The difference between the figures indicates that only 30% of people living with HIV have passed HIV test and know they are HIV-positive. During the first six months of 2010 the incidence of HIV has increased by 6.0% as compared with the previous year. In the first six months of 2010, the prevalence of HIV among the citizens of Ukraine remained at the level of 2009 – 1.1%. Death rate indicator is one of the main indicators describing the HIV/AIDS epidemic situation. In 2009, for the first time the number of AIDS-related deaths decreased as compared with the previous year – from 2,710 to 2,591 (from 5.8 to 5.6 per 100 thousand people). This is the evidence of the positive influence of large-scale ART implementation in Ukraine. On the contrary, during the first 6 months of 2010, as compared with the same period of 2009, death rate from AIDS-related illnesses has increased by 29.6% - from 1,262 cases (2.7 per 100 thousand people) to 1,598 (3.5 per 100 thousand people).AIDS epidemic spreading rate is ahead of the response: during the first six months of 2010, almost 23% of all new HIV cases were discovered due to clinical implications of the HIV infection15.The estimated data on the size of risk groups and PLWH confirmed by the National Council on TB and HIV/AIDS as of September 10, 200916 are as follows: IDUs – 290,000; CSWs – 78,000 (it is important to notice that the number does not take into account female IDUs); clients of CSWs (men) – 234,000; MSM – 95,000; prisoners – 145,000 people.During the last four years (2005-2009) the number of new registered cases of HIV among IDUs remained virtually unchanged and amounted on the average to 7,088 people annually (6,282, 7,127, 7,088, 7,015, and 7,113). Another high risk group is men having sex with men (MSM). From 2005 to 2009, a growing number of new HIV cases among the members of this group was registered annually: 20, 35, 48, 65, 94 (by years), including cases of AIDS. It may be assumed that the number of cases of HIV transmitted sexually among MSM is significantly underestimated because some cases are attributed to the other causes17.In 2008, for the first time since 1995, there was a change in the proportion of HIV transmission ways: the share of sexual transmission grew bigger than the parenteral one. However, IDUs remain the main source of HIV transmission, and the potential level of the virus penetration into a wider population is determined first of all by sexual transmission of the infection from IDUs to people not using injection drugs18. As there are no convincing, confirmed data indicating that the sexual transmission among general population causes most of the new HIV cases, Ukraine remains a country of concentrated epidemic, where HIV is confined to the risk groups19. ^ Overview of the AIDS response in the country Funding and budget allocation. According to the estimated national expenses on HIV/AIDS response in Ukraine, the amount of money spent in 2007 was over 79.3 mln. US dollars (47 mln. US dollars – contribution of the state), and in 2008 – over 102.4 mln. US dollars (60 mln. US dollars – contribution of the state).In 2008, 102.4 mln. US dollars were allocated as follows: 57% - treatment and care; 24% - prevention; 11% - program development and implementation; 5% - supportive environment and development of communities; 2% - staff; 1% - children made orphans because of AIDS and vulnerable children; 1% - research; 1% - social support and protection.Development of communities and creation of supportive environment received 5% of the total amount in 2007 and 2008. This share includes funding of the programs for advocacy, human rights, institutional development in the field of AIDS and AIDS programs aimed at women20. Main donors: GFATM (18.3 mln. US dollars – 2007, 26.8 mln. US dollars – 2008); United States Agency for International Development (almost 6 mln. dollars – 2007 and almost 8.7 mln. dollars in 2008), UN agencies (over 2.1 mln. US dollars in 2007 and 1.7 mln. US dollars in 2008), and others. Part of the funds for ART programs, ART laboratory monitoring, blood donors and pregnant women testing, health care facilities infrastructure development etc. has been received from the state budget. A significant part of the funds is supplied from local budgets – this money is usually spent to finance health care, education and social protection institutions, offering various services to population on the local level21.TREATMENT Most of the funds are spent for the "treatment and care" component, where government funds prevail. For example, their share was more than 31 mln. US dollars in 2007. As compared to previous years, activities of Ukraine in the field of treatment, care and support improve. For instance, the amount of ART increased 57 times: from 250 courses of treatment in 2004 to 14,256 as of November 1, 2009.22Virtually all of the existing antiretroviral drugs and their generics are included into the National List of Essential Drugs and Medical Products. Antiretroviral treatment in Ukraine is free of charge and offered at the place of residence, normally at the AIDS centers. The total need in ART is 25,380 courses as of July 1, 2010. ART is received by 18,836 persons (74.2%). There are 6,544 persons in need of the ART who do not receive it, and 67 of them are children. These figures account only for the patients currently registered for follow-up care.Despite the fact that IDUs remain the main driving force behind the epidemic, their share among those receiving ART is as low as 7.7% (1,443 persons); this figure does not account for the patients who receive both ART and SMT simultaneously. Low number of IDUs among the people waiting for ART (the ones needing but not receiving the ART) – 12.6% (822 persons) – shows that this category of patients has limited access not only to ART, but to general medical care as well23.Calculation of the need in ART24 is based on the outdated WHO recommendations, according to which indication for ART is CD4 Communities’ representatives have identified the following problems in the area of treatment: Provision of support on the basis of registration address is a barrier for MARPs: "...The institute of registration is a serious problem in Ukraine. For example, if I am registered in the city of Kyiv but have no official residence registration there, I have no universal access. Even if I am detected to be HIV-positive, I will have to go and get medical registration in the city of my residence registration". 6,544 persons need but do not receive ART26. True accessibility of drugs remains restricted, especially for the people living in small towns. There are difficulties with diagnostics for ART prescription: "...[The treatment is] Free! But before getting treatment you have to pass medical tests. The tests are done at clinic departments where they demand money for everything, if the clinic is not cooperating with some NGO". • Inefficient use of the state funds caused by procurement of medical equipment, drugs and vaccines at excessive prices as compared to procurement made by Alliance-Ukraine and the Network of PLWH: "…making any decision takes very long time;[it can be explained by the fact] that they use corrupted procurement schemes and many medications do not receive the status of humanitarian aid". The access to diagnostics and ART treatment in prisons is problematic: “...no CD4, no viral load testing, these tests are expensive, it is virtually impossible to pass them... ...If there are no test results, nobody will provide [treatment] to people”.^ Access of IDUs to ART remains a problem.PREVENTIONThe state did not fund any prevention programs for vulnerable groups in 2009, and all the programs were funded with the money of GFATM and other international donors27. On the one hand, there is information about the percentage of MARPs covered with the prevention programs in 2009: IDUs – 32%, CSWs – 59%, MSM – 63%, prisoners – 15%.28 But we were unable to find in the report any information about the numbers of those in need, used to calculate the percentages.On the other hand, we believe that the efficiency of prevention programs among injection drugs users should be considered as low. For example, even the official number of the first time registered HIV cases caused by injection drugs use remains at the same level: in the first six months of 2010, 3,560 cases were registered, while in 2009 – 7,113 cases, in 2008 – 7,015 cases29. It is necessary to mention SMT programs operating in all the regions of Ukraine. As of December 1, 2010, SMT programs covered 5,926 patients. The number of vacant courses in the program is over 1,60030. According to the data received during interviews, risk groups members do have the access to prevention services. However, accessibility of a service may be limited due to the regional specifics: "the threshold of the SMT program is high: one has to submit documents confirming the fact of 3 to 6 unsuccessful treatments, and to pass many medical tests, both of which does not guarantee one being admitted [into the SMT program]." Representatives of IDU/SMT community have identified the following barriers for SMT programs: it was planned to establish SMT rooms in small towns but in fact there is no intention to do it; medical workers have negative attitude towards the program; community members have to get registered with drug treatment facilities which limits their rights and makes them vulnerable to abuse of power from the side of law enforcement agencies. medical staff make admission criteria excessively strict. Concerning the youth, the interviews allow to claim that this group receives sufficient messages related to HIV/AIDS, and everybody has or can get access to prevention activities and information. However, the access to such free of charge prevention materials as condoms and lubricants is restricted. Young people make an emphasis on understanding of the risks and explanatory work in the society: "Actual social work with each group of population, beginning with the top echelons of authorities and ending with working people, with the people of toil. The whole society should be involved in fighting the HIV/AIDS epidemic." Among the services for prevention of vertical transmission are diagnostics, provision of ART drugs and supply of infant milk formulas. As it was assumed, most of the barriers to access vertical transmission prevention exist among prisoners: "...even condoms are difficult to get in the penal colony." "Caesarean section is really expensive in prison, and they never do it, even knowing a girl is HIV-positive. So they make girls give birth without the operation, and children are born with the disease."^ HUMAN RIGHTS A number of regulatory documents in Ukraine protect rights and freedoms of people, including people living with HIV. There are general documents like the Constitution of Ukraine (art. 24) and the Law of Ukraine "Fundamental Principles of the Health Care Legislation of Ukraine". There are also specific regulatory documents concerning the protection of human rights of people living with HIV. In 1991 the Verkhovna Rada adopted the Law of Ukraine "On Prevention of Acquired Immune Deficiency Syndrome (AIDS) and Social Protection of Population". Some provisions concerning the rights of people living with HIV are included into the Law of Ukraine "On Information", the Criminal Code of Ukraine, and the Civil Code of Ukraine31. Despite sufficient number of the existing regulatory legal acts concerning HIV, the respondents in general either believe the level of their actual implementation as very low, or do not know about their existence. "The rights enforcement is insufficient; we have a right to free treatment, but it is not enforced, not all those who need receive treatment, and this situation is being aggravated".MARPs and PLWH encounter significant level of discrimination at healthcare institutions: "The highest level of discrimination is among medical workers. It is the failure to provide medical aid. For example, a surgeon has to operate, but he says: "You may kill me or fire me, but I will not do it – I am afraid." The Law of Ukraine "On Ratification of the National Program on HIV Prevention, Treatment, Care and Support of HIV-Infected Persons and AIDS Patients for 2009-2013" includes: "Providing for control of observation of the HIV/AIDS legislation in the field of labor relations to overcome discrimination of HIV-infected people", i.e. measures aimed at the increase of awareness among PLWH about their rights and checking organizations’ policies for discrimination. According to the Program, in 2009 it is planned to check 120 enterprises, institutions and organizations. Meeting this objective cannot be checked because of the absence of information on the actions taken32.The interviews allow to conclude that some law-enforcement representatives' views on MSM behavior as deviant causes biased, discriminating attitude, which, in turn, is a barrier for prevention and treatment programs.It is important to notice specificity of the target groups in terms of protection of their rights. Most of MARP community members have negative experience of interaction with state and law-enforcement agencies. Security of life and personal freedom should be the main priority for advocacy organizations: "...advocates or advocacy organizations either refuse to work with MARPs or demand open trials. However, in most cases such practice is destructive. People are afraid of victimization and revenge from the side of law enforcers after the "advocacy group" leaves the scene." MARP community members believe it is necessary to implement programs aimed at elimination of the system violations of human rights (particularly the rights of patients) by representatives of governmental agencies. SECTION 2^ COMMUNITY SECTOR INVOLVEMENTTarget setting and review processesThe key issues raised during the interviews with community sector members and reflecting the process of community sector involvement are analyzed in this section.To provide for consolidated decision-making to identify priorities in state policy, programs and actions with regard to fighting HIV/AIDS and tuberculosis in Ukraine, the following agencies have been established: the National Council on TB and HIV/AIDS and the Committee on Counteraction of HIV/AIDS and Other Socially Dangerous Diseases33.In December 2010, the Committee was re-organized into the State Service of Ukraine on Counteraction of HIV/AIDS and Other Socially Dangerous Diseases and remains subordinated to the MH34.As of June 7, 2010, members of the National Council on TB and HIV/AIDS include: 1 representative of the academic sector; 16 representatives of the governmental sector; 4 representatives of NGOs; 3 representatives of people living with the diseases: 2 – HIV, 1– tuberculosis; 1 – private sector; 1 representative of faith-based organizations; 2 representatives of country development partners: UN, US Agency for International Development; 1 member of the Parliament, 1 representative of trade unions (data collected from the country's Proposal for Round 10 to the GFATM). One of the deputies of the Chairman of the Council is a representative of non-governmental organizations of people living with HIV. The deputy is elected at a meeting by the members of the Council35.In the National Council there are no representatives of key affected groups (data collected from the country's Proposal for Round 10 to the GFATM).Advocacy priorities are the issues concerning representation of IDUs, CSWs, MSM and prisoner communities in the National Council; issues of transparency of the delegation of authorities by communities to working groups and involvement of more people living in the regions of Ukraine into program planning, implementation and monitoring.The main challenges identified by respondents during the interviews on the issue of community involvement process are the following: Difficulties of involvement into creation of the national programs for community experts living in the regions: there is no funding for transportation and accommodation in Kyiv during the periods of reviewing laws, programs, and proposals. The work is done mostly remotely, without the possibility of personal participation in discussions, which decreases the level of influence on the decision-making process; Formally, all regulatory acts in Ukraine pass the stage of civil discussion where any person or organization may submit a proposal. Nevertheless, there is no transparent and understandable mechanism taking into account the opinions of the community representatives with the subsequent transformation of such opinions into proposals to the regulatory acts; There are no systems and long-term projects providing for the MARPs representatives participation in designing, implementation and monitoring of state policies/programs, including the ones accounting for advocacy strategy to scale up the influence of MARPs communities at all the levels of authorities; We believe that insufficient participation of the regional MARPs experts causes the aggregation of indicators for populated areas of different sizes. Most of the interviewed community sector representatives think that the most serious problems of Universal Access and provision of a complete package of services arise in small towns of Ukraine. At the same time, the targets indicators are calculated in a way making it possible for the small towns to "get lost" in the overall number of the activities to be implemented. SECTION 3Universal Access^ Agreed Target Indicators In June 2001 Heads of State and Government Representatives gathered at the United Nations General Assembly Special Session (UNGASS) on HIV/AIDS. At this meeting, the Heads of State and Government Representatives signed the Declaration of Commitment on HIV/AIDS36. In April 2006, the ‘Road Map on Scaling-up Towards Universal Access to HIV/AIDS Prevention, Treatment, Care and Support in Ukraine by 2010" was created with support of UNAIDS. There are national indicators for monitoring and performance evaluation of HIV/AIDS epidemic control (MH Order # 870 dated 28.12.2007, indicators conform to the UNGASS indicators37). The Order contains indicators, responsible agencies and reporting deadlines. However, we were unable to find information on targets used for the monitoring. UNAIDS has identified nine priority areas to support countries in order for them to achieve the national targets on Universal Access38. In our country, the targets set are formalized by the Law of Ukraine #1026-17 dd. 19.02.2009 "On Ratification of the National Program on HIV Prevention, Treatment, Care and Support of HIV-Infected Persons and AIDS Patients for 2009-2013". The Program being an integral part of the Law includes detailed description of the targets. Let us examine achievement of some of the target indicators of the National Program of Ukraine, most corresponding to the UNAIDS-recommended indicators.^ To prevent sexual transmission of HIV39: coverage indicators related to prevention activities among vulnerable groups (IDUs, CSWs, MSM, and prisoners) as is stipulated by the National Program: 2009 – 20%, 2010 – 30%, 2011 – 40%40. According to UNGASS data, in 2009 the coverage of prevention activities was as follows: IDUs – 32%, CSWs – 59%, MSM – 63%, and prisoners – 15%; the percentage of people who rendered sexual services for remuneration and used a condom in the last 12 months in 2008-2009 was 88% (sample group was 3,284 CSWs)41. Estimated number of CSWs is 78,00042. ^ To save mothers from death and infants from the infection: to reduce the percentage of cases of mother-to-child transmission of HIV from 7% in 2009 to 6% in 2010 and 5% in 2011 (targets of the National Program). In 2009, 94.9% of affected pregnant women received ART in Ukraine. However, in dynamics we can see the reduction in the number of cases of children getting infected by the HIV-positive mothers from 27.8% in 2001 to 6.6% in 2007. The total number of children with confirmed HIV status keeps increasing43. To provide treatment for people living with HIV: to increase the number of children and adults receiving ART: in 2009 – 50% adults, 100% children; in 2010 – 60% and 100% respectively44.Under the estimated data, in 2010 there are 360,000 HIV-positive persons over 15 living in Ukraine. According to the official statistics, as of July 1, 2010 there are 106,366 people with HIV registered, which is 60% of 171,661 HIV-diagnosed persons and 30% of the estimated number of HIV-positive individuals. In 2009, 48% (74.2% of those who require treatment) of the adults and 100% of children receive ART in Ukraine. ART is free of charge, normally provided in AIDS centers with the use of generic medications. However, the death rate during the first 12 months after the beginning of ART (8.8%) indicates late start of treatment with low immune status. Less than 90.8% of those who began receiving ART had an access to CD4 testing, and among those 93.8% had CD4 lower than 350 cells per microliter45. To prevent death from tuberculosis among people living with HIV. According to UNGASS report, in 2008 21% of HIV-positive people received tuberculosis treatment (data on the total number is unavailable). As of July 1, 2010 1,056 HIV-positive persons being tuberculosis patients are waiting to receive ART treatment46. HIV prevalence among vulnerable groups in 2009: IDUs – 22.9%, CSWs – 13.2%, MSM – 8.6%, prisoners – 15.0%47.To protect drug users from getting infected with HIV. Targets for Ukraine according to the National Program: 2009 – 20% (accomplished – 32%, UNGASS report does not state the total number clearly), 2010 – 30%, 2011 – 40%. In the WHO/UNAIDS/UNODC guide on target setting in the system of developing targets for effective interventions it is recommended to take account of regular (at least once a month during the year) coverage percentage, accounting for comprehensiveness of prevention, treatment and care programs among IDUs48. In 2009, coverage of IDUs who applied to receive the services in Ukraine was 52% of the total number of 290,000 persons; 5,078 persons in 26 regions got access to SMT. IDUs have access to the following services: distribution of syringes and condoms, HIV testing (voluntary counseling); hepatitis B and C testing, diagnostics and testing for sexually transmitted infections; trainings and provision of information literature, leisure organization and overdose prevention49. The problem is that the harm reduction strategy does not take into account specifics of drug use: IDUs often receive (buy) drugs in syringes, and drug dealers make manipulations with their syringes in one common syringe; the information on possible harm reduction through change of precursors for preparation of psychostimulants/pharmaceutical drugs is not sufficiently used. Myths about methadone harm spread among opiate-addicted IDUs and medical workers are a barrier for SMT implementation: at the moment, there are more than 1,600 vacant methadone-based SMT courses. ^ To eliminate punitive laws, policies, practice, stigma and discrimination hindering the efficient response to AIDS. On December 23, 2010, the Draft Law on Amendments to the Law of Ukraine "On Prevention of Acquired Immune Deficiency Syndrome and Social Protection" was approved in the second reading50. Important achievements of the Draft Law are the provisions, which: lift restrictions on the entry to Ukraine for foreign citizens due to their HIV status; define clear and transparent procedures for access and testing for different categories of people – adults, children under 14, children aged 14 to 18 years; provide HIV-positive people the right to receive additional reproductive technologies; ensure protection of confidential information related to HIV status and its disclosure conditional upon informed consent of the HIV positive individual51. However, the new version of the Law supports controversial legal provisions of a discriminatory nature, such as: criminal penalties for knowingly putting another person in danger of getting infected; the right to deport foreigners or stateless citizens with HIV/AIDS, if their behavior endangers health, rights and lawful interests of the citizens of Ukraine52.Drug policies in Ukraine become more stringent: in 2010, the level of criminalization of the consumers of illicit opiates grew 20 times, increasing their vulnerability to violation of rights and restricting their access to medical and social programs; the future of SMT programs depends on the political will of the Government and regional authorities. For example, in Donetsk the City Council has forbidden to conduct SMT at the institutions belonging to communal property of the city, i.e. opiate-addicted IDUs may not receive SMT in hospitals of Donetsk. "...today Ukraine has enough resources, in particular financial, to provide efficient response to the epidemic. Despite this fact, the situation is still the same: AIDS remains one of the biggest threats of the national scale. We lack commitment and pragmatism. Observation of rights of PLWH and MARPs should become one of the priorities of the HIV/AIDS epidemic response in Ukraine, because at the current stage: the most vulnerable groups are get very little attention at the national level;effective prevention, treatment and support programs are under the constant threat of termination; human rights protection is seen as public health protection." Valery Ryabukha53.To extend capacity of young people to protect themselves from HIV. According to the National Program, the share of youth involved into information campaigns in 2009 shall amount to 20% and in 2010 – 30%. According to the UNGASS report, the share of young people aged 15-24 years, who both correctly identify the ways of prevention of sexual HIV transmission and reject misconceptions about HIV transmission, was 40% of the total number of 2,602 respondents. We may say that this indicator has improved as compared to 2007, but in the last two years no major changes took place54. To stop violence against women and young girls. In Ukraine, about 70% of women suffer from domestic violence, and about one thousand of them die as the result annually, though statistics does not reflect the actual situation because the problem is hidden from general public. Besides, criminal responsibility for employers refusing to hire pregnant women is not enforced, women receive lesser salary comparing to the salary of men doing the same job55. ^ To improve social protection of HIV-affected people Chapter IV of the Law of Ukraine "On Prevention of Acquired Immune Deficiency Syndrome (AIDS) and Social Protection of Population" provides for social protection of people living with HIV and AIDS patients as well as their families. Article 17 of the Law clearly states that "HIV-infected persons and AIDS patients enjoy all the rights and freedoms guaranteed by the Constitution and the Laws of Ukraine". Apart from general rights, the Law also provides for the rights to: • compensation of damages caused by the restriction of their rights which occurred as a result of disclosure of the information on those persons having been infected with human immunodeficiency virus; • free provision of medications required to treat any diseases they may have; • free provision of individual prevention means; • psychosocial support; • free travel to the place of treatment and back at the expense of the medical institution which issuing a referral to treatment; • use of an isolated living room.However, access to those rights is substantially limited: medical facilities do not wish to refer HIV-positive persons to diagnostics in order to avoid paying for their travel; HIV-positive individuals purchase the required medications at their own cost. The main problems of the insufficient social protection are low level of observation of the national-level regulatory documents by local executive services and underfunding of HIV/AIDS programs. General revision of targets may be problematic even in case of reasonable necessity for such a revision as the list and the values of some of the indicators are fixed in the Law of Ukraine #1026-17 dd. 19.02.2009 which calls for a parliamentary procedure to revise the targets. SECTION 4Achievement of Universal Access Targets The main problem of evaluating the progress in achieving some of the prevention and treatment target indicators is inability to assess the level of their achievement due to the lack of comparability of the targets and progress reports. Besides, the methodology of obtaining the information on the progress of program performance is unknown. In the table below a list of targets and planned indicators stipulated by the Law of Ukraine "On Ratification of the National Program on HIV Prevention, Treatment, Care and Support of HIV-Infected Persons and AIDS Patients for 2009-2013" is shown. They conform to the UNGASS indicators56. The figures illustrating achievement of the targets were taken from the National Program on HIV Prevention, Treatment, Care and Support of HIV-Infected Persons and AIDS Patients for 2009-2013 Progress Report for 200957 and from the National Report on Monitoring Progress Towards the UNGASS Declaration of Commitment on HIV/AIDS (reporting period: January 2008 – December 2009)58. No. Target59 Indicators60 Performance in 2009 Comments 2009 2010 MH Report61 UNGASS62 1 Access of HIV-infected children and adults to continuous antiretroviral therapy through centralized purchase of ART drugs. Children – 100%, adults – 50% Children – 100%, adults – 60% (there are 50,000 patients in the Road Map63) no single value Children – 48%, adults – 100 % Calculation of the need in ART is based on the outdated criteria (CD4 2 Vertical HIV transmission rate. 7% 6% data not available data not available No available data to evaluate the progress; UNGASS data for the year 2007 – 6.2% 3 Testing coverage, %: general population; members of the risk groups; prisoners. no annual targets set no annual targets set - - No available data to evaluate the progress 4 Percentage of IDUs covered with prevention activities. 20% 30% (60% in the Road Map) 52% (of the estimated number of 290,000) 32% In the WHO/UNAIDS/UNODC guide on target setting in the system of target development 60% is recommended as the target for the regular coverage (at least once a month in the course of a year)65. 5 Percentage of prisoners covered with prevention activities. 20% 30% In the Road Map: 70% of prisoners, in pre-trial detention centers - 100% 15% (total number is unknown) and 19.2% (of the estimated number of 139,653) 15% The targets differ. As of September 10, 2009, the estimated number of prisoners was 145,00066: data on the estimated number differ. 6 Percentage of persons rendering commercial sex services covered with prevention activities. 20% 30% (60% in the Road Map67) 36.2% (of the estimated number of 69967 in the report) 59% Targets and results differ and do not conform to the usual estimated data: 78 00068 7 Percentage of men having sex with men covered with prevention activities. 20% 30% (30% in the Road Map) 13.5% (from the estimated number of 95,000) 53% Performance results differ 8 Coverage with treatment services: prevention, diagnostics and treatment of opportunistic infections of HIV/AIDS-related diseases 50% 60% 31,646 patients no data Targets: the basic number for calculation is unclear. Indicators do not allow assessing the progress. 9 Percentage of educational institutions which have teachers having passed the required training among their staff 8,000 teachers, 37% of educational institutions 8,000 teachers, 49% of educational institutions 1,662/4,000 teachers; 31%/58.7% of educational institutions 58.7% Indicators of achievement in the MH report differ, progress is unclear. 10 Percentage of donor blood checked with test systems having passed a quality control 20% 30% (100% in the Road Map) General data is not available 0% Donor blood may not be checked for HIV with a guaranteed result. Among the main barriers and obstacles on the way to achieving Universal Access community representatives indicate insufficient funding of prevention programs, corruption, and lack of explanatory work among population: "...some of the money allocated to fight AIDS is getting lost, Ukraine does not have proper systems to organize effective public service advertising. Everything is completely disorganized." Another important barrier is prevailing narrow departmental interests over the interests of overcoming the epidemic and patients' interests, and also certain evidences of corruption. Such situation is seen by respondents everywhere – in hospitals, in the actions of law enforcement agencies, and also in general in the actions of organizations providing professional HIV services: "We now have more troubles since we have to pay 20 [hryvnias] to law enforcement officers in order to enter the flat [where illicit drugs are sold]. To exit, if you are carrying something with you, you've got to pay another 20 [hryvnias]… and so on"; "Lack of funding: 7 thousand people are not able to obtain treatment. But it is caused by corruption in the Ministry of Health. The allocated money could be used much better, but since there are, so to say, clans, which control the money, and get big cuts on all the purchases – well, the price could be much lower on the state procurement, and much more people would be able to receive the treatment."Resume Activities of all the sectors of Ukrainian society aimed at overcoming of and control over the HIV/AIDS epidemic are of contradictory, inconsistent and insufficiently coordinated nature. The main destabilizing factors are domination of narrow departmental and corruption interests over the interests of society and public health. There are problems in assessing the level of progress in achievement of the Universal Access for key populations and prevention in Ukraine due to partial lack of comparability of targets in different regulations as well as of targets and progress indicators. Difficulty of progress assessment is also influenced by the absence of targets and performance reports; lack of coordination in the use of the estimated number of MARPs as a denominator (number of people requiring the service). In order to achieve the Universal Access by 2015, it is required to: Revise prevention programs considering the adequacy of services and effectiveness of influence on HIV prevalence; involve youth into designing of informational messages in order to increase their impact on behaviour change; develop special services aimed at prevention of domestic violence and create a national strategy to improve women's situation in Ukraine. Decrease the level of criminalization, promote non-discriminating and evidence-based drug policy, including programs to improve health and human rights protection for drug users, direct efforts at eliminating systematic violations of human rights (including rights of patients) by representatives of governmental agencies. Fund projects aimed at involving MARPs representatives into development of state policies/programs. Purposefully collect the opinions from MARPs representatives to transform them into proposals to regulatory legal acts. Continue social mobilization; support the process of self-organization of key populations’ representatives. Keep on improving and extending activities of the National Monitoring and Evaluation Program with maximum involvement of the community sector members and their organizations (networks). Include representatives of youth as well as communities of IDUs, CSWs, MSM and prisoners into the State Service of Ukraine on Counteraction of HIV/AIDS and Other Socially Dangerous Diseases. Intensify and extend information programs aimed at rising awareness of the risks and threats related to HIV/AIDS transmission among youth. Facilitate further decentralization of services aimed at overcoming HIV/AIDS epidemic and neutralization of its consequences. In particular, facilitate further improvement of access to the services in small towns.ANNEX 1 METHODOLOGY This project is based on Participatory Action Research (PAR) methodology, stipulating significant participation of representatives of the community, being subject of research, in the process of data collection, their interpretation and distribution of results. An integral part of this approach is commitment to scaling up the capacity of people and communities, participating in the research to bring benefits to all the participants. In accordance with studies using PAR methodology one of the purposes of this project is improvement of understanding of the role of public sector, in particular key populations, in monitoring of different measures taken by the state to achieve key indicators by definite term as well as in support of participation of the public sector in implementation of some of those measures. Thus, a methodology has been developed where the main attention is paid to the opinion of public sector; quality methods are used, allowing interpretation of data, as well as certain elements of qualitative approaches. Comprehensive analysis of all the issues related to universal access or offering solutions of all possible problems are not among the purposes of this project. Only two areas have been chosen to carry out this research: HIV prevention and access of the key populations to services. We have chosen those two lines of research as preliminary analysis has shown gaps in governmental commitments and measures implemented in those areas. It was resolved to use estimated data related to the size of risk groups as well as PLWH, approved by the National Council on TB and HIV/AIDS dd. September 10, 2009. In the report of WHO, MH, Alliance-Ukraine, UNAIDS (September 2009), the estimates of the groups are set forth as follows:IDUs – 290,000;CSWs – 78,000 (it is important that this number does not include women injecting drugs);^ Clients of CSWs – (men) – 234,000;MSM – 95,000;Prisoners – 145,000 persons.Altogether there were 7 in-depth interviews with national experts from MARPs and 24 interviews with representatives of key populations. At the working meeting held on November 4, 2010 the following criteria of respondent selection were defined by a joint resolution of representative