Positive Childhood Project Advocacy Group

1. Positive Childhood ProjectAdvocacy Group www.vd-spb.ru врачидетям.рф This project is funded by the EU Проект финансируется ЕС www.streetchildren.org.uk www.pravorebenka.comwww.childright.ru POSITIVE CHILDHOOD

2. Project Overall Objective:protect the rights of HIV-affected children through providing them with equal life chances Specific Objectives: Create an Advocacy Group on child rights and HIV. Promote interactions between government and NGOs working with HIV-affected children and families. Share and promote the European best practices in organizational networking and platform-building among NGOs and government institutions. Strengthen advocacy capacity of Russian NGOs in five regions of Russia around the rights of HIV-affected children and families.

3. Advocacy Group includes representatives of government institutions and NGOs from five regions of Russia most active in the field of protecting the rights HIV-affected children and families. Advocacy Group activities aim to increase government awareness of the problem of HIV and thus change the policy around HIV-affected children and families. Advocacy Group activities are based on main international and Russian documents outlining priorities of combating HIV/AIDS, and are implemented in accordance with the principles developed and approved by the Group members.

4. Primary Task of the Advocacy Group: Ensure country-wide provision of milk formula to all children under 1 years old born to HIV-positive mothers in the Russian Federation to prevent mother-to-child transmission of HIV

5. Advocacy Strategy should meet the following objectives: Analyze the situation and formulate legislative and normative proposals to address the problem; Analyze external factors (political, economic, social etc.) that currently influence the process of addressing the problem; Amend legislative proposals in account of the above;

6. Initiate public discussions of the problem and proposals; secure public support; • Submit the formulated proposals to relevant government bodies; • Gain support from policy makers; • Monitor the promotion and approval of proposals; • Organize and participate in public campaigns and actions to inform decision-makers about the lack of milk formula for children born to HIV-positive women

7. Monitoring of Milk Formula Provision Regions Findings Irkutsk region Leningrad region Nizhniy Novgorod region Saratov region Smolensk region City of Orel Orenburg region Rostov region Ryazan region Sverdlovsk region Tatarstan Republic Some regions were provided with milk formula out of the funds of the GLOBUS program (Sweden), which is currently inactive. Some regions provide milk formula to all children, without defining a special group of children who were born to HIV-positive mothers. In some regions special regulations ensure the provision of milk formula to children, meeting their physiological needs

8. Advocacy campaigns may be: • Regional campaigns – tomonitor and evaluate regional situation andtrack changes in regional and municipal legislative acts regulating the provision of milk formula to children born to HIV+ mothers. • Cross-regional campaigns– to adopt federal legislative acts regulating the provision of milk formula to children born to HIV+ mothers. • PR campaigns– to raise stake-holder and wide community awareness of the importance of HIV prevention for children born to HIV-positive mothers by providing them with milk formula for free.

9. Advocacy Group Achievements: • A document outlining the goals and objectives of the Advocacy Group, Advocacy Strategy, and detailed Advocacy Group Workplan. • A background report containing the analysis on the problem, statistical data and regulatory environment. • Economic analysis on the provision of milk formula to children born to HIV-positive mothers in Russia. • Analysis on previous campaigns to provide milk formula to children born to HIV-positive mothers.

10. All-Russian monitoring (53 regions of Russia) of MF provision with the direct support of the Duma’s Interfractional Group on combating HIV and other socially significant diseases. • During the monitoring, the problem of MF provision in regions was brought to the attention of the decision-makers (governors, vice-governors, health ministers). • Establishment of contacts with key stake-holders (health minister, State Duma deputies, representatives of the Russian Agency for Health and Consumer Rights, Head of the Federal AIDS Center, Chief Physician of the Republican Children’s Infectious Diseases Hospital). • In the regions – with administrations and staff of AIDS Centers (Ryazan, Nizhny Novgorod, Smolensk, Yekaterinburg, Magnitogorsk, Novosibirsk and other regions).

11. Four public hearings in the Public Chamber of Russiaon HIV prevention and the problem of HIV prevalence in Russia. • Resolution papers, including legislative proposals, prepared and submitted for consideration to the Administration of the President of the Russian Federation, Prime Minister, Ministry of Public Health and Social Development. Responses obtained.

12. Four press conferences on the provision of medication and diagnostic agents to people living with HIV (including children), prevention of mother-to-child transmission of HIV, and provision of MF to children born to HIV+ mothers. • Advocacy Group members participated in country-wide and international public events on the problem of HIV

13. Organization of the charity action “Give a Chance to the Child!” to provide MF to children born to HIV+ mothers. The action took place in 10 regions of Russia, with over 150 children provided with MF products. The event convened representatives of AIDS Centers, healthcare and social protection agencies. The action was organized by ROC staff, Advocacy Group members, and regional NGO activists. Media coverage of the action helped raise public awareness of the problem.

14. Proposals submitted to regional governments. MF provision situation has improved in some of the regions. • Development of networking with a number of organizations providing HIV services. • Three articles on the problem of HIV mother-to-child transmission published in Protect Child Magazine.

15. Membership in the working group convened by the Federation Council of Russia to develop a concept paper of 2012-2017 National Strategy for Children. • The National Strategy has a section on HIV-affected children. • On June 1, 2012, the National Strategy was approved by Decree #761 of the President of Russia. The Government was offered to approve a plan of first-priority activities to implement the national strategy, including allocation of funds.

16. Challenges of Advocacy Activities • Participants of an advocacy campaign are not equally involved in the process. • Collection of evidence is a challenge (specific cases of HIV transmission to children from HIV+ mothers through breast feeding). • Changes in the political situation related to parliamentary and presidential elections. • Change of key decision-makers. • Need for searching and contacting new actors willing to resolve the problem. • Poor understanding of HIV-related problems among stakeholders and civil society in general.

17. Further steps of the Advocacy Group to address the problem of MF provision to children born to HIV+ mothers • Participate in the Coordinating Councilto develop activities for implementing 2012-2017 National Strategy for Children. • Discuss mechanisms of providing milk formula to HIV-affected children with Advocacy Group members and representatives of other NGOs. • Initiate consultations within the professional community on possible mechanisms of mother-to-child prevention of HIV. • Establish contacts with and submit proposals to address problems of HIV-affected children and families to new Ministry of Public Health and Social Development. • Participate in the development of the government concept of HIV prevention in Russia. • Formulate proposals to develop regional programs of preventing mother-to-child transmission of HIV.