The role of PLWHA community in building partnerships with Government to render assistance to People Living with HIV Vladimir Zhovtyak East Europe and Central Asia Union of PLWHA All-Ukrainian Network of PLWHA , 16 th ERNA General Meeting

All-Ukrainian Network of PLWHA Established in 2001 by HIV+ people for improvement of life quality and protection of their rights Is represented in all regions of Ukraine today 2006 – became a laureate of the “Red Ribbon” Award as the best organization in the world in the area of combating HIV/AIDS-related stigma and discrimination One of the key players in HIV/AIDS sphere in Ukraine Principal Recipient of the Global Fund’s grants Реципиент грантов ГФ

East Europe and Central Asia Union of PLWHA Established in 2005 by PLWHA for PLWHA Is a network of the networks – unites PLWHA organizations from 16 countries of EECA region Mobilizes PLWHA community of the region for increasing its impact on scaling up the access to treatment The strategic goal: By the initiative of PLWHA Community 100% financing the ART treatment is provided by 2020 in all countries-participants of the ECUO from the governmental budget for all PLWHA who need it and this financing is effectively used

«East Europe and Central Asia Union of PLWHA is the inspiring example of uniting people, living with HIV, as a driving force of social transformations». From the speech of Michel Sidibé, UNAIDS Executive Director, at the opening of the III EECA HIV/AIDS Conference

Community-based Organizations Help the governments to cover the “hardly accessible” groups of population with the services of prevention, treatment, care and support Initiate changes in the legislation, proceeding from the requirements of the HIV+ people and the groups of risk and representing them on all levels of the state power With the aid of the international organizations work out and implement the innovative projects Share with the government the obtained experience for the further realization of time-tested innovative programs by the state

Objectives of the communities Monitoring and advocacy of the access to treatment programs, diagnostics Providing the services basing on PLWHA’s needs Scaling up the access to the services Participation in decision-making process related to community at the local and national levels Participation in implementation of national programs of counteracting HIV/AIDS Initiation of changes in the Health System and at the nationwide level Securing the viability of the programs Attraction of investments to the country (working places, services)

Experience of Ukraine GF grants of 1,6 and 10 Round have been drawn into the country with PLWHA Community’s participation The PLWHA Network is one of the implementers of these grants, and consequently one of the implementers of the National Program A number of approaches to rendering and calculation of the cost of services, effective use of the resources has been elaborated within the framework of the grants with direct participation of the PLWHA Network The tried and tested methods and approaches can also be successfully used in the State Health System

Institutionalization of the services ART, which began in Ukraine within the framework of GF grants, is provided today 80 % by the state The Day-care Centres for HIV+ children work on the basis of the State Centres of Social Services for Family, Children and Youth and are financed from the budget All the projects are realized in close cooperation with the state establishments at the local and national level The GF grant is the part of the Nationwide Program on AIDS

Cooperation with the Authorities Participation of the Head of Coordination Council of the Network in the meetings of the Prime-Minister of Ukraine with representatives of the most influential NGOs of Ukraine in order of presenting the burning problems and needs of the community and the ways of their solution Cooperation of the PLWHA Network with the Committee of the Verkhovna Rada of Ukraine on Health Issues for lobbying 100% access to ART treatment as well as changes in the legislation in the field of HIV/AIDS and the policy of pricing the medicines Participation of the Head of Coordination Council of the Network in the work of the Public Consultative Council under the Authorized of the President of Ukraine on the issues of protecting the children’s rights

Participation in governmental committees

Representation of PLWHA community of Ukraine in the key governmental committees/councils/groups National Council on issues of counteracting TB and HIV-infection/AIDS (the Head of the All-Ukrainian Network of PLWHA is a Deputy Chair of the Council) Working group on the issues of planning and evaluation of fulfillment of the National program of securing HIV-infection prevention, treatment, care and support of HIV-infected and AIDS patients for Working group on the issues of perfecting the organization of the treatment of HIV/AIDS patients in Ukraine Interdepartmental working group on the issues of improving rendering medical aid to patients co-infected with HIV/TB The group on technical and economic grounding the ART procurement at MoH of Ukraine Working group on issues of monitoring the resistance of HIV to ART drugs UNAIDS working group on developing the gender strategy for National HIV/AIDS Program

Representation of PLWHA community of Ukraine in the key governmental committees/councils/groups Working group on the issues of perfecting the organization of treatment of HIV/AIDS patients Working group on the issues of the intellectual property and access to medicines Working group on the issues of planning the personnel and development of the personnel potential in the field of HIV/AIDS and TB Forum of social workers, realizing the programs on prevention for vulnerable groups and care and support for PLWHA Supervisory Council of the UN Management Program of Drugs and Crime “Partnership for effective HIV/AIDS prevention in the vulnerable groups in Central Asia and Eastern Europe” and the Project “Raising the efficiency of measures of law-enforcement bodies, penitentiary system and Drug Service in response to the HIV/AIDS epidemic” (HIV-PLEDGE) Interdepartmental working group on the issues of monitoring and evaluation of efficiency of carrying out the program measures on counteracting HIV- infection/AIDS

Participation of PLWHA Community in forming the policy and legislation in HIV/AIDS sphere in Ukraine PLWHA Network is an official co-implementer of the National program of securing HIV-infection prevention, treatment, care and support of HIV-infected and AIDS patients for The Law of Ukraine on HIV was adopted in 2010 with the submitted proposals of the PLWHA Community, namely the Law envisages the absence of travel restrictions for entering Ukraine by HIV-positive foreigners; warning the partner about infection, without disclosing the HIV-status to him; NGO’s right for participation in the state order competitions; the right for indemnification in connection with illegal disclosure of the HIV-status; substitutive supportive therapy for HIV-positive IDU’s; prohibition for medical workers to give information about the patient’s HIV-positive status to other doctors or establishments without his agreement (securing confidentiality). Currently the following draft law with included proposals of the community is being prepared for consideration. With support of the Head of the Committee of the Verkhovna Rada of Ukraine on Health Issues the Network has lobbied the adoption of the Law “On carrying out the programs of the Global Fund for Fighting with AIDS, TB and Malaria In Ukraine”, which releases all the goods procured within the GF grants from VAT

The PLWHA Community’s Actions on advocacy of the access to treatment in Ukraine

2007-Advocacy on access to treatment Corruption = Death Bureaucrats, clean the ears!

2009 – Corruption In FASHION The Action has shown the actual image of the officials in whose pockets millions of hryvnyas intended for procurement of ARV-medicines are accumulated every year. In 2009 the MoH purchased ART-drugs at 4 times higher price than the same drugs bought by the PLWHA Network. At the press-conference following the Action representatives of the Network and the Ministry agreed to collaborate on reducing the cost of the drugs.

2010 – Hospitals For Sale. Expensive As a result of the advocacy campaign “Hospitals for sale. Expensive” the Gromashevskiy Institute of epidemiology and infectious diseases of the National Academy of Medical Sciences of Ukraine has continued its work in the regular regime despite the resolution of the Cabinet of Ministers about the disposition of the Institute and the clinics belonging to it.

2011 – Let Me Live! To ensure with ART all those who need it the All-Ukrainian Network of PLWH has initiated the action "Let me live!". On the 30th of August, 2011, the Network has passed to the President of Ukraine 2000 children’s cards with request to help them and their relatives to survive. Children from families affected by HIV epidemic asked President to buy ART for all who need it. A 14 years old girl, whose mother’s HIV-positive wrote a personal letter to President, where she asked to buy pills and stop HIV/AIDS epidemic in the country. She told about her request publicly during press-briefing organized by the Network. All cards and Tetiana’s letter were delivered to the Citizens’ Reference Office of the President Administration. The same day the President of Ukraine has charged the Prime Minister to finance that year procurement of treatment for PLWH in full. The President has also charged the Government to include PLWH treatment requirements into the draft of the State Budget for 2012 and make all necessary steps to deliver the medicines to those who need it.

2011 – GOLDEN ENEMA AWARD Award of the “Golden Enema” to the President of the National Academy of Medical Sciences of Ukraine for the most destructive actions in the sphere of public health served for saving the premises and continuation uninterrupted work of the Gromashevskiy Institute of epidemiology and infectious diseases of the National Academy of Medical Sciences of Ukraine in which in particular there is the Department for HIV-positive patients from the whole country.

2012 – The Deputy-Altruist The advocacy campaign is designed to obtain allocation of 1 billion hryvnyas into the State budget of 2013 for curing HIV/AIDS, TB and viral hepatitis. Today 32 out of 449 deputies have voted for allocation of required funds for saving the patients.

In ECUO together with the partners (EATG, ЕССВ, ITPCru и All- Russia Union of PLWHA) carried out the analysis “Access to ART treatment in 7 countries of SIC" - the first in the region effort of the civil society to collect the data and evaluate the influence of the existing systems of planning, financing and procuring medicines for treatment of HIV-infection on the access to ART in 7 countries of EECA region. During the AIDS 2010 it carried out the regional campaign “We are dying less, but we are dying faster…”, owing to which the messages of the PLWHA Community of EECA region were heard by the world community Together with ITPCru it initiated establishment of EECA CAB (Community Advisory Board of EECA’s patients) – a stable ground for the regional dialogue of patients, pharmaceutical companies and other stakeholders on scaling up the access to treatment in the region In 2012 ECUO has developed the regional advocacy campaign to support the measures on the country level on scaling up the access to treatment ECUO’s coordinating role in scaling up the access to treatment and reducing the cost of ART in the region

EECA countries’ experience Programs on care and support are realized in every country of the region PLWHA Community in the countries of the region is the state’s partner on realization the national programs on counteracting HIV/AIDS Representatives of ECUO’s organizations participate in the work of all key committees on HIV/AIDS at the national level The work for scaling up to ART treatment in all countries of the region is being carried out

Achievements in EECA region In , the policies and practices in the countries of the region were changed also owing to the active involvement of PLWHA into the work of the key committees at the national level: A draft law on providing a monthly social allowance to HIV- positive children beginning with January 2011 was adopted in Tajikistan. In Moldova, the legislation on prohibition of discrimination in the field of labor including the cause of being infected with HIV has been changed; the discriminative Orders of the MoH which contradicted the current legislation have been canceled.

Achievements in EECA region In Estonia new recommendations on scaling up the access to HIV testing of vulnerable groups, in which free use of HIV express-testing including NGOs as well has been envisaged. In Uzbekistan the proposals of PLWHA Community on treatment, diagnosing and care for HIV-positive children in accordance with the new WHO’s recommendations, have been included into the new National Protocols of HIV treatment in children. In Kyrgyzstan the component on treatment of hepatitis C has been included into the National Program on HIV/AIDS for

PLWHA Community is the catalyst of the required changes of the Public Health Systems

THANK YOU VERY MUCH FOR YOUR ATTENTION!

Contact information: All-Ukrainian Network of PLWHA Tel , East Europe and Central Asia Union of PLWHA Tel ,