Violation of Rights of People Living with HIV/AIDS in Health

Care Setting in Odessa, Ukraine

Odessa, Ukraine August 2008Kostiantyn Zverkov,

Director of NGO “Era of Mercy”

Who are WeWho are We?? Odessa Regional Non-Governmental Organization “Era of Odessa Regional Non-Governmental Organization “Era of

Mercy” was founded in May 2007 by a group of activists Mercy” was founded in May 2007 by a group of activists affected by HIV/AIDS and concerned about the issues of affected by HIV/AIDS and concerned about the issues of HIV/AIDS prevention and access to treatment. HIV/AIDS prevention and access to treatment.

Nowadays the organization consists of 35 active members Nowadays the organization consists of 35 active members and carries out socially important projects in the framework and carries out socially important projects in the framework of the national programme “Counteracting to HIV/AIDS of the national programme “Counteracting to HIV/AIDS Epidemic in Ukraine. 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 Some members of the organization

have a medical background; have a medical background; others became experts in the result others became experts in the result

of a long-term and challenging work.of a long-term and challenging work.

Project Research ResultsProject Research Results

«Development of the Self-Organization Advocacy Capacity in Odessa Region»

Research timeframe2007 – 2008

The research is conducted with the support of International Charity Renaissance

Foundation

Purpose of the researchPurpose of the research

To study the issue of the To study the issue of the right observance to right observance to

health care services for health care services for injecting drug users and injecting drug users and

people living with people living with HIV/AIDS;HIV/AIDS;

To inform corresponding To inform corresponding managers of health care managers of health care

facilities and public facilities and public health decision makers health decision makers

about identified violations about identified violations in order to undertake in order to undertake

proper measuresproper measures..

Target groups of the research Target groups of the research /respondents/respondents

In order to receive In order to receive necessary information necessary information

we involved and we involved and disseminated disseminated

questionnaires among questionnaires among 110 drug users from 110 drug users from Odessa and Odessa Odessa and Odessa region. All of these region. All of these

respondents had HIV+ respondents had HIV+ status and were on status and were on

treatment in state TB treatment in state TB clinics, therefore they clinics, therefore they

were receiving services were receiving services in AIDS-service state in AIDS-service state health care facilitieshealth care facilities

Methods of information Methods of information collectioncollection

QuestionnaireQuestionnaire Focus groupsFocus groups Documenting of the facts Documenting of the facts

of the rights violation of the rights violation while receiving HIV/AIDS while receiving HIV/AIDS and TB treatmentand TB treatment

rights violation

100%

rights violation

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

respondents who paid for

prophylaxis20%

respondents who did not pay anything

5%

responents who partially paid

25%

respondents who paid for

medications50%

respondents who paid formedications

respondents who paid forprophylaxis

respondents who did not payanything

responents who partially paid

Medications

Cases of Exclusion from the

Programme14%

Cases of Discrimination

57%Cases of Payments for Treatment

5%

Cases of Refusal in Services Provision

24%

Cases of DiscriminationCases of Payments for TreatmentCases of Refusal in Services ProvisionCases of Exclusion from the Programme

Treatment

Respondents Who Paid for Diagnostics

48%

Respondents Who Paid Partially

31%

Respondents Who did not Pay anything

5%Respondents Who Received

Assistance from NGOs16%

Respondents Who did not Pay anything

Respondents Who Paid Partially

Respondents Who Paid for Diagnostics

Respondents Who Received Assistance from NGOs

Diagnostics

Major problems on access to treatment faced Major problems on access to treatment faced

by IDU/PLWHA in state TB dispensariesby IDU/PLWHA in state TB dispensaries:: Lack of social programmesLack of social programmes DOTS system does not workDOTS system does not work In most cases TB diagnostics and treatment was not free of charge, which 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 stated about violation of the Law of Ukraine on TB where it is stipulated the TB diagnostics and treatment was free of chargeTB diagnostics and treatment was free of charge..

Non-professionalism and corruption among health care workersNon-professionalism and corruption among health care workers Exclusion from the in-patient treatment programmes of the patients who Exclusion from the in-patient treatment programmes of the patients who

violate the hospital rules in spite of urgent necessity in treatmentviolate the hospital rules in spite of urgent necessity in treatment Lack of information about available HIV/AIDS prevention and treatment Lack of information about available HIV/AIDS prevention and treatment

methodsmethods. . Second line TB drugs are not available in most cases. Test systems for Second line TB drugs are not available in most cases. Test systems for

extrapulmonary TB are not available. extrapulmonary TB are not available. Lack of access to health care and counseling on HIV/AIDS and drug abuse Lack of access to health care and counseling on HIV/AIDS and drug abuse

treatment treatment Health care workers of TB services do not have proper knowledge and skills Health care workers of TB services do not have proper knowledge and skills

in treating HIV/AIDS + TB in treating HIV/AIDS + TB . .

Up to now TB is treated by the first line drugs (tubaside, isonioside, Up to now TB is treated by the first line drugs (tubaside, isonioside, rephampycine). In many cases when such treatment schemes are used for rephampycine). In many cases when such treatment schemes are used for treatment HIV/TB patients resistance to these outdated drugs is developed treatment HIV/TB patients resistance to these outdated drugs is developed and some patients are treated for several yearsand some patients are treated for several years. .

Second line drugs (reserved medications) for TB treatment are mainly not Second line drugs (reserved medications) for TB treatment are mainly not availableavailable. .

Communication with AIDS centres, narcological dispensaries and Communication with AIDS centres, narcological dispensaries and specialized clinics is not in place, which prevents IDU/PLWHA/TB specialized clinics is not in place, which prevents IDU/PLWHA/TB patients from receiving adequate comprehensive services. patients from receiving adequate comprehensive services.

Drug users with TB have to take a full course of TB treatment prior to Drug users with TB have to take a full course of TB treatment prior to enrollment to any ARV therapy, substitution treatment or drug enrollment to any ARV therapy, substitution treatment or drug rehabilitation programmes. Currently it is considered to be a serious rehabilitation programmes. Currently it is considered to be a serious obstacle. obstacle.

Stigma and discrimination of HIV-positive drug users. Such people are Stigma and discrimination of HIV-positive drug users. Such people are also unable to pay for medical services and medications.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.

Major problems on access to treatment faced by Major problems on access to treatment faced by IDU/PLWHA in AIDS CentresIDU/PLWHA in AIDS Centres

Health care workers are lacking skills in blood taking. Nurses are often Health care workers are lacking skills in blood taking. Nurses are often unable to take blood samples from injecting drug users, therefore such unable to take blood samples from injecting drug users, therefore such patients have to do it themselves and help other IDU patients in taking patients have to do it themselves and help other IDU patients in taking samples of bloodsamples of blood

Incompetence and corruption in health care settingIncompetence and corruption in health care setting Disclosure of HIV status by health care workers (often it is done not by 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 infectious diseases specialists, but by other specialists, e.g. surgeons, TB doctors, gynecologists)doctors, gynecologists)

Doctors refer HIV/IDU/TB patients from one specialist to another in order 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.to get rid of responsibility and not to treat such a patient.

Lack of test systems for biochemical blood tests therefore clients have to Lack of test systems for biochemical blood tests therefore clients have to pay for such tests in health care facilitiespay for such tests in health care facilities

Doctors practice extortion for various servicesDoctors practice extortion for various services.. Lack of medications and tests for opportunistic infections (Hepatitis, toxo, Lack of medications and tests for opportunistic infections (Hepatitis, toxo,

citomegalovirus, etc)citomegalovirus, etc) Payment as charity donation for test tubes is practicedPayment as charity donation for test tubes is practiced Lack of referral system with narcological and TB dispensariesLack 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 Exclusion from inpatient treatment programmes for hospital rules violation

(mainly for drug and alcohol use)(mainly for drug and alcohol use)

Advocacy process and resolution of problems and rights protection of IDU and PLWHA

NGO “Era of Mercy” signed cooperation agreements with AIDS centres NGO “Era of Mercy” signed cooperation agreements with AIDS centres and TB clinicsand TB clinics

The research results were reported at the meetings of the Coordination The research results were reported at the meetings of the Coordination bodies on combating HIV/AIDS/TB and children’s homelessness in bodies on combating HIV/AIDS/TB and children’s homelessness in Odessa regionOdessa region

Conducting of working meeting and round table discussions with public Conducting of working meeting and round table discussions with public officials in order to highlight research results and discuss possible officials in order to highlight research results and discuss possible improvement of the situationimprovement of the situation

Communication was set up between state institutions and NGOs in order to Communication was set up between state institutions and NGOs in order to provide adequate assistance and referrals of IDUs/PLWHA/TBprovide adequate assistance and referrals of IDUs/PLWHA/TB

Main outcomes and achievements of the Main outcomes and achievements of the projectproject

Referral strategy for the clients of AIDS centres, TB services and Referral strategy for the clients of AIDS centres, TB services and NGOs was developed and introducedNGOs was developed and introduced..

Identified cases of rights violations resulted in 15 complaints to Identified cases of rights violations resulted in 15 complaints to international organizations which were referred to the Ministry of international organizations which were referred to the Ministry of Health of Ukraine. Health of Ukraine.

In the result of working meetings with the management of AIDS In the result of working meetings with the management of AIDS centres and TB services and highlighting of IDUs/PLWHA rights centres and TB services and highlighting of IDUs/PLWHA rights violation on access to treatment money demand for various services violation on access to treatment money demand for various services under the pretext of charity donations from clients was eradicated. under the pretext of charity donations from clients was eradicated.

Involvement of journalists from a national channel to highlighting the Involvement of journalists from a national channel to highlighting the issues of PLWHA rights violation and access to treatmentissues of PLWHA rights violation and access to treatment

110 IDU/PLWHA respondents acquired knowledge about their rights to 110 IDU/PLWHA respondents acquired knowledge about their rights to proper and free health care in state health care facilities. proper and free health care in state health care facilities.

35 35 persons, who were refused from HIV/TB co-infection treatment in persons, who were refused from HIV/TB co-infection treatment in the result of advocacy activities received necessary medications in the the result of advocacy activities received necessary medications in the AIDS centre. AIDS centre.

Activists of NGO “Era of Mercy” – members of the All-Ukrainian Activists of NGO “Era of Mercy” – members of the All-Ukrainian Network of PLWHA in Odessa region created a working group on Network of PLWHA in Odessa region created a working group on monitoring of access to services for IDU and PLWHA in state health monitoring of access to services for IDU and PLWHA in state health care facilities of Odessa region for undertaking proper and timely care facilities of Odessa region for undertaking proper and timely measures in case of rights violations on access to treatment of measures in case of rights violations on access to treatment of HIV/AIDS/TB/Drug abuse. 15 group members started active advocacy HIV/AIDS/TB/Drug abuse. 15 group members started active advocacy activity.activity.

ConclusionsConclusions

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

Non-governmental organization Non-governmental organization “Era of Mercy” “Era of Mercy”

We are inviting all the organizations to exchange experience We are inviting all the organizations to exchange experience in advocacy, psychological support, prevention, treatment, in advocacy, psychological support, prevention, treatment,

care and support of PLWHA and IDUcare and support of PLWHA and IDU

WELCOME TO ODESSA (UKRAINE)!WELCOME TO ODESSA (UKRAINE)!

zverkov@list.ruzverkov@list.ru