1. Violation of Rights of People Living with HIV/AIDS in Health Care Setting in Odessa, Ukraine Odessa, Ukraine August 2008 Kostiantyn Zverkov, Director of NGO “Era of Mercy”

2. Who are We? Odessa Regional Non-Governmental Organization “Era of Mercy” was founded in May 2007 by a group of activists affected by HIV/AIDS and concerned about the issues of HIV/AIDS prevention and access to treatment. Odessa Regional Non-Governmental Organization “Era of Mercy” was founded in May 2007 by a group of activists affected by HIV/AIDS and concerned about the issues of HIV/AIDS prevention and access to treatment. Nowadays the organization consists of 35 active members and carries out socially important projects in the framework of the national programme “Counteracting to HIV/AIDS Epidemic in Ukraine. Nowadays the organization consists of 35 active members and carries out socially important projects in the framework of the national programme “Counteracting to HIV/AIDS Epidemic in Ukraine. The organization also renders The organization also renders assistance to the most vulnerable assistance to the most vulnerable groups of population in Odessa groups of population in Odessa and Odessa region. and Odessa region. Some members of the organization have a medical background; others became experts in the result Some members of the organization have a medical background; others became experts in the result of a long-term and challenging work. of a long-term and challenging work.

3. Project Research Results «Development of the Self-Organization Advocacy Capacity in Odessa Region» Research timeframe 2007 – 2008 The research is conducted with the support of International Charity Renaissance Foundation

4. Purpose of the research Purpose of the research To study the issue of the right observance to health care services for injecting drug users and people living with HIV/AIDS; To inform corresponding managers of health care facilities and public health decision makers about identified violations in order to undertake proper measures.

5. Target groups of the research /respondents In order to receive necessary information we involved and disseminated questionnaires among 110 drug users from Odessa and Odessa region. All of these respondents had HIV+ status and were on treatment in state TB clinics, therefore they were receiving services in AIDS-service state health care facilities

6. Methods of information collection Questionnaire Focus groups Documenting of the facts of the rights violation while receiving HIV/AIDS and TB treatment

7. The research results demonstrated that 100% of respondents faced multiple rights violations by the representatives of public health system, AIDS centres, TB clinics in Odessa and Odessa region

8. Medications

9. Treatment

10. Diagnostics

11. Major problems on access to treatment faced by IDU/PLWHA in state TB dispensaries: Lack of social programmes Lack of social programmes DOTS system does not work DOTS system does not work In most cases TB diagnostics and treatment was not free of charge, which stated about violation of the Law of Ukraine on TB where it is stipulated the TB diagnostics and treatment was free of charge. In most cases TB diagnostics and treatment was not free of charge, which stated about violation of the Law of Ukraine on TB where it is stipulated the TB diagnostics and treatment was free of charge. Non-professionalism and corruption among health care workers Non-professionalism and corruption among health care workers Exclusion from the in-patient treatment programmes of the patients who violate the hospital rules in spite of urgent necessity in treatment Exclusion from the in-patient treatment programmes of the patients who violate the hospital rules in spite of urgent necessity in treatment Lack of information about available HIV/AIDS prevention and treatment methods. Lack of information about available HIV/AIDS prevention and treatment methods. Second line TB drugs are not available in most cases. Test systems for extrapulmonary TB are not available. Second line TB drugs are not available in most cases. Test systems for extrapulmonary TB are not available. Lack of access to health care and counseling on HIV/AIDS and drug abuse treatment Lack of access to health care and counseling on HIV/AIDS and drug abuse treatment Health care workers of TB services do not have proper knowledge and skills in treating HIV/AIDS + TB. Health care workers of TB services do not have proper knowledge and skills in treating HIV/AIDS + TB.

12. Up to now TB is treated by the first line drugs (tubaside, isonioside, rephampycine). In many cases when such treatment schemes are used for treatment HIV/TB patients resistance to these outdated drugs is developed and some patients are treated for several years. Up to now TB is treated by the first line drugs (tubaside, isonioside, rephampycine). In many cases when such treatment schemes are used for treatment HIV/TB patients resistance to these outdated drugs is developed and some patients are treated for several years. Second line drugs (reserved medications) for TB treatment are mainly not available. Second line drugs (reserved medications) for TB treatment are mainly not available. Communication with AIDS centres, narcological dispensaries and specialized clinics is not in place, which prevents IDU/PLWHA/TB patients from receiving adequate comprehensive services. Communication with AIDS centres, narcological dispensaries and specialized clinics is not in place, which prevents IDU/PLWHA/TB patients from receiving adequate comprehensive services. Drug users with TB have to take a full course of TB treatment prior to enrollment to any ARV therapy, substitution treatment or drug rehabilitation programmes. Currently it is considered to be a serious obstacle. Drug users with TB have to take a full course of TB treatment prior to enrollment to any ARV therapy, substitution treatment or drug rehabilitation programmes. Currently it is considered to be a serious obstacle. Stigma and discrimination of HIV-positive drug users. Such people are also unable to pay for medical services and medications. Stigma and discrimination of HIV-positive drug users. Such people are also unable to pay for medical services and medications. Treatment interruption due to lack of necessary medications. Treatment interruption due to lack of necessary medications.

13. Major problems on access to treatment faced by IDU/PLWHA in AIDS Centres Health care workers are lacking skills in blood taking. Nurses are often unable to take blood samples from injecting drug users, therefore such patients have to do it themselves and help other IDU patients in taking samples of blood Health care workers are lacking skills in blood taking. Nurses are often unable to take blood samples from injecting drug users, therefore such patients have to do it themselves and help other IDU patients in taking samples of blood Incompetence and corruption in health care setting Incompetence and corruption in health care setting Disclosure of HIV status by health care workers (often it is done not by infectious diseases specialists, but by other specialists, e.g. surgeons, TB doctors, gynecologists) Disclosure of HIV status by health care workers (often it is done not by infectious diseases specialists, but by other specialists, e.g. surgeons, TB doctors, gynecologists) Doctors refer HIV/IDU/TB patients from one specialist to another in order to get rid of responsibility and not to treat such a patient. Doctors refer HIV/IDU/TB patients from one specialist to another in order to get rid of responsibility and not to treat such a patient. Lack of test systems for biochemical blood tests therefore clients have to pay for such tests in health care facilities Lack of test systems for biochemical blood tests therefore clients have to pay for such tests in health care facilities Doctors practice extortion for various services. Doctors practice extortion for various services. Lack of medications and tests for opportunistic infections (Hepatitis, toxo, citomegalovirus, etc) Lack of medications and tests for opportunistic infections (Hepatitis, toxo, citomegalovirus, etc) Payment as charity donation for test tubes is practiced Payment as charity donation for test tubes is practiced Lack of referral system with narcological and TB dispensaries Lack of referral system with narcological and TB dispensaries Discrimination due to HIV+ and lack of money to pay for HIV co- infection. Discrimination due to HIV+ and lack of money to pay for HIV co- infection. Exclusion from inpatient treatment programmes for hospital rules violation (mainly for drug and alcohol use) Exclusion from inpatient treatment programmes for hospital rules violation (mainly for drug and alcohol use)

14. Advocacy process and resolution of problems and rights protection of IDU and PLWHA NGO “Era of Mercy” signed cooperation agreements with AIDS centres and TB clinics NGO “Era of Mercy” signed cooperation agreements with AIDS centres and TB clinics The research results were reported at the meetings of the Coordination bodies on combating HIV/AIDS/TB and children’s homelessness in Odessa region The research results were reported at the meetings of the Coordination bodies on combating HIV/AIDS/TB and children’s homelessness in Odessa region Conducting of working meeting and round table discussions with public officials in order to highlight research results and discuss possible improvement of the situation Conducting of working meeting and round table discussions with public officials in order to highlight research results and discuss possible improvement of the situation Communication was set up between state institutions and NGOs in order to provide adequate assistance and referrals of IDUs/PLWHA/TB Communication was set up between state institutions and NGOs in order to provide adequate assistance and referrals of IDUs/PLWHA/TB

15. Main outcomes and achievements of the project Referral strategy for the clients of AIDS centres, TB services and NGOs was developed and introduced. Referral strategy for the clients of AIDS centres, TB services and NGOs was developed and introduced. Identified cases of rights violations resulted in 15 complaints to international organizations which were referred to the Ministry of Health of Ukraine. Identified cases of rights violations resulted in 15 complaints to international organizations which were referred to the Ministry of Health of Ukraine. In the result of working meetings with the management of AIDS centres and TB services and highlighting of IDUs/PLWHA rights violation on access to treatment money demand for various services under the pretext of charity donations from clients was eradicated. In the result of working meetings with the management of AIDS centres and TB services and highlighting of IDUs/PLWHA rights violation on access to treatment money demand for various services under the pretext of charity donations from clients was eradicated. Involvement of journalists from a national channel to highlighting the issues of PLWHA rights violation and access to treatment Involvement of journalists from a national channel to highlighting the issues of PLWHA rights violation and access to treatment

16. 110 IDU/PLWHA respondents acquired knowledge about their rights to proper and free health care in state health care facilities. 110 IDU/PLWHA respondents acquired knowledge about their rights to proper and free health care in state health care facilities. 35 persons, who were refused from HIV/TB co-infection treatment in the result of advocacy activities received necessary medications in the AIDS centre. 35 persons, who were refused from HIV/TB co-infection treatment in the result of advocacy activities received necessary medications in the AIDS centre. Activists of NGO “Era of Mercy” – members of the All-Ukrainian Network of PLWHA in Odessa region created a working group on monitoring of access to services for IDU and PLWHA in state health care facilities of Odessa region for undertaking proper and timely measures in case of rights violations on access to treatment of HIV/AIDS/TB/Drug abuse. 15 group members started active advocacy activity. Activists of NGO “Era of Mercy” – members of the All-Ukrainian Network of PLWHA in Odessa region created a working group on monitoring of access to services for IDU and PLWHA in state health care facilities of Odessa region for undertaking proper and timely measures in case of rights violations on access to treatment of HIV/AIDS/TB/Drug abuse. 15 group members started active advocacy activity.

17. Conclusions Rights violation and discrimination of people living with HIV/AIDS/TB and drug users still remain one of the main obstacles to universal access to treatment of HIV, drug abuse and TB in Ukraine. Rights violation and discrimination of people living with HIV/AIDS/TB and drug users still remain one of the main obstacles to universal access to treatment of HIV, drug abuse and TB in Ukraine.

18. Non-governmental organization “Era of Mercy” We are inviting all the organizations to exchange experience in advocacy, psychological support, prevention, treatment, care and support of PLWHA and IDU WELCOME TO ODESSA (UKRAINE)!

19. zverkov@list.ru