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The word "progress" will have no sense as there will be unfortunate children. ( Albert Einstein )

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The word "progress" will have no sense as there will be unfortunate children. ( Albert Einstein )

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  1. ROMANIA:ACTIONS AGAINST VIOLATION OF THE RIGHTS OF CHILDREN LIVING WITH HIV/AIDSEECAACMoscow 15 – 17 May 2006 Lucia Maria StirbuTerre des hommes Foundation Lausanne/Switzerland UNOPA/Romania

  2. The word "progress" will have no sense as there will be unfortunate children.(Albert Einstein)

  3. We are a "UNION"... • In the beginning there was the fear... Fear of being marginalized, rejected... Because in the eyes of the society we were guilty of the sacrilege of having tainted the human perfection, showing that the human being is not immortal, as we like to believe… • But there came a day when we defeated the fear, we chased away the loneliness and we broke the silence... We stopped being victims in various statistics and we decided to unite our voices in one single voice. We chose to become one body. With one voice. A force. We chose to be… and we are…  • We are a "UNION"... We are united by the same suffering, the same purpose, the same mission... We still call each other colleagues, even though deep down inside we know we are more then a team, we are friends, the members of a community, a new family…    Florentin, a young HIV+ member of UNOPA

  4. Background • Romania’s characteristic: more than a half of Europe’s positive children are Romanian (57%), 90% being infected into a medical unit(December 2005: 11 187 persons living with HIV/AIDS; more than 7 000 are children). • 1997-2000: the first organizations of HIV/AIDS affected people were created. • General objective of these organizations: to fight for the PLWHA’s rights. • 1st June, 2000: the“Licurici“ organization (Giurgiu/Romania)andtheTerre des hommes foundation (Lausanne/ Switzerland) have organized, in partnership with UNICEF, the first meeting of these organizations . • Result of this meeting: UNOPA (« National Union of the Organizations of HIV/AIDS Affected People »), formed by 24 NGOs from Romania (about 1 200 persons).

  5. UNOPA SPECIFIC OBJECTIVES • To inform governmental authorities & professional organizations about human rights violation; • To develop HIV/AIDS programs in collaboration with institutions, national and international organizations, authorities; • To receive and distribute supporting materials and funding to the members; • To request and deliver support in cases of emergency; • To organize meetings, seminars, workshops, trainings, conferences on HIV/AIDS patients’ problems; • To request and organize trainings for patients; • To offer moral and material support for new HIV/ AIDS organizations or foundations; • To edit and distribute publications.

  6. ACTIONS AGAINST VIOLATION OF THE PLWHA’s RIGHTS (2000 – 2002) • National conferences, exhibitions with paintings of HIV/ AIDS children. • Sustained Lobby - Government, Parliament, Ministry of Health and Family, local Councils, National Health Insurance House. • Legislative proposals. • Permanent contacts with the pharmaceutical companies. • Permanent cooperation with the mass media representatives at national and international level.

  7. NATIONAL CONFERENCE «TOGETHER AGAINST AIDS»  Date and place: 20th November 2001, Bucharest.  Organizer: UNOPA, under the leadership of the Presidential Administration, in cooperation with UNAIDS. Financers: Ministry of Health, NAPD. • Theme: « Rights of people with HIV/SIDA - from ideal to reality ». • Purpose: - Presentation of the international rights of the persons with HIV/AIDS. - Analysis of how the Romanian legislation is respected. - Proposals for a specific law, adapted to the real needs of HIV/AIDS people.  Result:creation of the AIDS National Intersectoral Commission (CNIS) - UNOPA is its vice-president.

  8. SUSTAINED LOBBY OF UNOPA 2000 - 2002  Actions: - Permanent dialogue and open letters to Romanian President, Prime Minister, Minister of Health and Family, President of the National Health Insurance House. - Protests in front of the government and the Health Minister, and of the local councils. Purpose: Report on the dramatic situation of the positive children and their families due to the violation of the commitment taken by Romania on international level, and of the proper law. Result: Awareness of the representatives of the public and private field, regarding the partnership, which involves all the factors in the movement for stopping the endemic, in the respect for all the rights of the affected people.

  9. LEGAL INITIATIVES  May 2002: UNOPA released legislative proposals to the Romanian Parliament according to the real needs of its members.  Purpose: - Elaboration of a special HIV/AIDS law.  Result: The new law was approved by the two chambers of the Parliament in November 8th 2002, but was applied only in April 2004, due to an excessive bureaucratic (details, elaboration of the strategy…).

  10. PERMANENT CONTACTS WITH THE PHARMACEUTICAL COMPANIES  2000 - 2002: Permanent dialogue of UNOPA with the six pharmaceutical companies.  Purpose: decrease of the ARV drugs prices, in order to scale up the permanent and equal access to the ARV treatment.  Results: - March 2001: Merck decreased with 87% the price of 2 drugs used in HIV/SIDA therapy (Stocrin and Crixivan). - January 2002: GSK decreased with 30% - 87% the ARV drug prices. - Endowment with the necessary equipment for specific investigations. - Free ARV therapy offered to children. - Subvention of the tests for the basic investigations (CD4 and viral load).

  11. PERMANENT COOPERATION WITH MASS MEDIA 2000 - 2002: - 7 press releases; - 5 press conferences; - many TV interviews in local, national and international journals.  Purpose: - report about the dramatic situation of the HIV + children; - report about the rights of these persons and the violation of the Romanian commitment at the international level.  Result: restart of ARV treatment after each article, interview, announcement or press conference of UNOPA.

  12. LEGAL ACTIONS AGAINST THE STATE RESPONSABLES  May 2002: Action brought by UNOPA at the Tribunal of Bucharest, against the Ministry of Health. • Issue: breaking the health insurance law, which stipulate free, permanent and equal access to medical treatment and care.  2002: 10 actions of the UNOPA associations against the local councils. • Issue: unpayment of the salary for the parents of the HIV/AIDS children.  Results: - No more interruption of the ARV treatment registered after the final juridical decision - November 2002; - There was no more unpayment of the salary. - HIV/AIDS people receive a monthly nutritional supplement.

  13. The HIV/AIDS situation in Romania in 2005 Some particular aspects ◊A general increase of the number of HIV positive persons which are requesting medical care and treatment; ◊ A bigger number of people having access to HAART (6.400 – Romania has the biggest number of PLWHA under treatment in all Central and Eastern Europe). The HAART and opportunistic infections treatment costs are covered from the National Subprogram 1.2 funds, being provided free of charge; ◊ High number of long term survivors with age between 13-15 years belonging to the age group born between 1987-1990, which were the main group in which were registered HIV/AIDS cases; ◊ Identification of new pediatric cases with birth years 1988-1989-1990, long term survivors and no more nosocomial transmission after 1994;

  14. ◊ Increase of vertical transmission after 1994. This implied an evidence of pregnant women and a constant intervention for preventing mother to child transmission;◊ The perspective of an increased number of new HIV cases among IDUs;◊ Romania has a National Strategy (adopted in 1999 and reevaluated for 2004-2007), as well as a National Plan for Universal Access to Treatment and Care; ◊Availability of ARV drugs used in developed countries, as well as international standards equipment for the Regional Centers’ laboratories (for immune and virus monitoring).◊Increase number of well-trained medical personnel involved in PLWHA assistance and care; expansion of the psychosocial network ensuring PLWHA support.

  15. General data on HIV/AIDS facts in Romania at 31.12. 2005 AIDS CASES AMONG CHILDREN 7263 AIDS CASES AMONG ADULTS 2562 TOTAL AIDS CASES 9825 HIV CASES AMONG CHILDREN 4478 HIV CASES AMONG ADULTS 1955 TOTAL HIV CASES 6433 LOST FROM RECORDS 541 AIDS DEAHTS IN CHILDREN 3622 AIDS DEAHTS IN ADULTS 908 TOTAL AIDS DEATHS 4530 PEOPLE LIVING WITH HIV/AIDS 11187 PATIENTS UNDER ACTIVE MEDICAL SURVEILLANCE 7623 PATIENTS RECEIVING HAART 6400

  16. New cases of HIV infection registered during the last 4 years

  17. Fight goes on… • … AT THE NATIONAL LEVEL – Active participation of UNOPA inside CNIS • Permanent lobby inside CNIS for applying HIV/AIDS law; • Periodic report of the therapy status (ARV treatment, opportunistic infections, medical investigations…); • Proposals for reinsertion programs for positive young people; • Militant attitude against the cases of discrimination and children stigma (in schools or in the community); • Active role among the national AIDS campaign “Open your hart!” and concerning the prevention and educational programs organized at the national level. • … AT THE INTERNATIONAL LEVEL – Solidarity with the global movement against this pandemic: UNOPA is member/signatory of: • ITPC (International Treatment Preparedness Coalition); • SEEN (South-Eastern European Network); • ECAB (European Community Advisory Board)/EATG; • Documents/ letters of solidarity with the HIV/AIDS peoples’ fight or addressed to some HIV/AIDS opinion leaders (General Manager WHO, pharmaceutical companies, G8…). - Sharing best practice among international meetings or through the mass media (interviews, articles, trainings…).

  18. CONCLUSIONS • Due to the permanent information and the improvement of their working methods, UNOPA became an active and militant partner at the national and the international level. • Being the only national organization of HIV/AIDS affected people in Romania, UNOPA was always in front of the fight for the rights of its members and against their discrimination. • Being aware of the role of the partnership in the movement for the PLWHA’s rights, the federation cooperated permanently with ALL the actors involved in the fight of this pandemic (public and private representatives on national/international level, NGOs). • Since the beginning, UNOPA received permanent financial and technical support from the Terre des hommes foundation - Lausanne/ Switzerland (advocacy, IEC, lobbying, international representation).

  19. “How many AIDS martyrs do you need to understand that they are just ordinary people like you and me? With a small difference: a virus. Like most of us who are carrying for all the lifetime the Herpes Virus, the same way they are carrying the HIV. A virus that can be successfully controlled by the Anti Retro Viral Therapy.Leave out the hate and the stigma and allow the HIV+ people to live their lives! Living their own way. They have the right, like everybody else, to a meaningful, positive life!”A parent of an HIV+ Romanian child, UNOPA member

  20. Thank you!

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