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THE INVOLVEMENT OF ROMANIAN PLWHA ORGANIZATIONS IN PROMO TING AND DEFENDING THE ROMANIAN PACIENTS ` RIGHTS

THE INVOLVEMENT OF ROMANIAN PLWHA ORGANIZATIONS IN PROMO TING AND DEFENDING THE ROMANIAN PACIENTS ` RIGHTS. National Union of Organizations of Persons Affected by HIV /AIDS

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THE INVOLVEMENT OF ROMANIAN PLWHA ORGANIZATIONS IN PROMO TING AND DEFENDING THE ROMANIAN PACIENTS ` RIGHTS

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  1. THE INVOLVEMENT OF ROMANIAN PLWHA ORGANIZATIONSIN PROMOTINGAND DEFENDING THEROMANIAN PACIENTS` RIGHTS

  2. National Union of Organizations of Persons Affected by HIV /AIDS It is the only federation in Romania formed by organizations of persons affected by HIV / AIDS, focusing on advocacy for promoting and protecting the rights of people infected and affected by HIV / AIDS in Romania. UNOPA is a federation which brings together 22 PLWHA organizations from 17 counties plus Bucharest and has over 1,500 PLWHA within the member organizations.

  3. SHORT HISTORY: UNOPA was established in the year 2000 from the necessity to make better known the problems of HIV positive people in Romania, by uniting into a federation several associations of parents and HIV positive people. Situation of HIV positive people in 2000: lack of antiretroviral treatment; the number of deaths among HIV positive persons was very high; HIV infected children were rejected from school and discriminated both by teachers and by colleagues; HIV positive adults lost their jobs or faced discrimination from the employers, etc.

  4. Since 2000 until present day, UNOPA defended and promoted the rights of HIV infected children, young people and adults and the rights of their families. UNOPA fought for: - Access to free antiretroviral treatment continuously and non-discriminatory Equal access to medical services; -Anadequatesocial systemto the needs of people infected / affected by HIV/AIDS and the appropriate psychosocial support; The right to nondiscrimination and social inclusion The right to education and socio-professional integration

  5. Since its constitution UNOPA assumed to be the voice for the HIV positive people in Romania, primarily fighting for access to treatment for all the HIV positive people. Starting with 2002, access to treatment was assured, all the HIV positive people who qualify according to The Treatment Guide receive free treatment. The second step in UNOPA`s activity was to assure a legal framework that would protect the rights of HIV positive people in Romania. In 2002 the 584 Bill was adopted and it assures protection against discrimination and stigma, towards access to education, work, social integration for the PLWHA.

  6. Also in 2002 National Commission for Surveillance, Control and Prevention of the HIV/AIDS Infection Cases was constituted, a national body that would coordinate all the efforts in the fight against HIV/AIDS. Within this committee UNOPA had the title of Vice-president since the beginning, having an important role in its activity. UNOPA`s fight continued, the next step was obtaining an adequate social protection for the PLWHA in Romania. Following the numerous interventions to the authorities, the PLWHA in Romania benefit today, besides treatment, of many rights granted by the social protection system, that improve significantly the quality of life for the PLWHA in Romania.

  7. Type of Activities Run by the PLWHA Organizations: • Social services providers for the HIV infected people and also for their communities. • primary psychosocial counseling, professional counseling, assistance in obtaining their rights, legal information, support for PLWHA. • informing and educating the community about HIV/AIDS. • organizing lobby and advocacy campaigns towards promoting and defending the rights of PLWHA. • permanent monitoring of the rights of PLWHA at local level.

  8. - Take action in order to solve the problems at the local level. • Inform UNOPA about the local problems and UNOPA forwards them to the national responsible authorities. • Information within schools, penitentiaries, clubs etc. • 1st December campaigns, public events for bringing the HIV/AIDS problem to the attention of the community, mass-media etc.

  9. UNOPA is founding member of the Coalition of Organizations of Patients with Chronic Diseases in Romania. The Coalition of Organizations of Patients with Chronic Diseases in Romania (COPAC)is the biggest organization in Romania that fights for promoting and defending patients` rights, gathering within it 14national organizations of patients with chronic diseases includingover 100 regional and local organizations, which reprezent approximately 2,5 billion pacients.

  10. 1. FEDERATION OF CANCER PATIENTS` ASSOCIATIONS IN ROMANIA2. NATIONAL UNION OF ORGANIZATIONS OF PERSONS AFFECTED BY HIV /AIDS (UNOPA)3. FEDERATION OF DIABETES ASSOCIATIONS IN ROMANIA4. ASSOCIATION OF PEOPLE WITH TRANSPLANTS IN ROMANIA5. ROMANIAN NATIONAL ALLIANCE FOR RARE DISEASES6. ROMANIAN NATIONAL ASSOCIATION OF HEMOPHILIACS 7. ASSOCIATION OF PACIENTS WITH HEPATIC AFFECTIONS IN ROMANIA -APAH-RO8. ROMANIAN MULTIPLE SCLEROSIS SOCIETY9. ASSOCIATION OF PEOPLE WITH THALASSEMIA MAJOR10. ROMANIAN ASSOCIATION OF PATIENTS WITH MUSCULAR-SCHELETIC AFFECTIONS 11. ANTIPARKINSON ASSOCIATION 12. FOUNDATION BAYLOR BLACK SEA 13. ROMANIAN OSTOMY ASSOCIATION 14. ROMANIAN ASSOCIATION OF PEOPLE WITH INFLAMMATORY DISEASES

  11. COPAC has shortly become a very active presence in the fight for promoting and defending the rights of the patients with chronic diseases in Romania, actively militating in the relation with the authorities for representation in the decision making committees from the Ministry of Health and The National Insurance House, for a real consultation with the patients regarding the health policies and programmes, for ensuring quality services for all patients, for assuring treatment for as many patients as possible on each pathology, for an adequate budgeting of the National Programmes considering the real needs of the patients.

  12. THANK YOU! www.unopa.ro www.copac.ro unopa@unopa.ro copac@copac.ro 004 021 319 93 29

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