Submitted by GSK
The workshop is part of a new two year programme, "Combating Social Exclusion of Young People Affected by HIV/AIDS" (SEYPA), created by the European Forum on HIV Children, Young People & Families (The European Forum). It is co-ordinated by the Romanian Angel Appeal with funding from GlaxoSmithKline's Positive Action programme. The forum provides a platform for young people to come together, identify discriminatory practices and highlight policy gaps which impact on equal opportunities and quality of lives of young people living with HIV/AIDS.
Despite only representing one sixth of the world's population, young people account for over half of the total number of people living with HIV/AIDS. UNAIDS/WHO estimate that in 2002, 8,000 young people became infected every day, and by the end of 2002 more than three million children were living with HIV/AIDS. This is not confined to Africa as the numbers of children living with HIV/AIDS in Western and Eastern Europe is also on the increase1 .
The medical consequences triggered by HIV/AIDS are well known, however, children and families livings with HIV/AIDS in Europe are increasingly marginalised by their communities, refused access to healthcare and are isolated from others. Dr Carlo Giaquinto, Department of Paediatrics, University of Padua, Italy and Chair of the SEYPA Project Advisory Board, explains: "Young people and families living with HIV/AIDS routinely encounter discrimination and neglect in mainstream health, education and social care services. For the first time this project brings young people's voices together to lead their fight for a better quality of life and a brighter future."
The young people participating in the project provide real-life experiences frequently overlooked in the swathe of statistics associated with HIV/AIDS. "We take the risk to speak about HIV because this way we can help thousands of other infected young people," said one participant. " We are like a very dark cloud with a pink surface. We have to pretend all the time that we are happy and that the HIV infection does not influence our every day life," said another.
Claire Hitchcock, GSK's Director of Global Community Partnerships for Europe says: "This project will enable young people to voice their needs and develop resources to help health professionals and communities in Europe be more sensitive to the needs of young people as they move into adulthood."
The project is being led in each country by a specialist non-government organisation using local youth coordinators who work directly with young people.
Romania: Romanian Angel Appeal Foundation
Spain: ACTUA (Association of People Living with HIV)
Portugal: AJPAS (AssociaÃ§Ã£o de Jovens Promotores da Amadora SaudÃ¡vel - Young Promoters of a Healthy Amadora Association)
Italy: CARAP-ONLUS (Comitato Assistenza Ricerca AIDS Pediatrico - Committee for Pediatric AIDS Care and Research)
About European Forum
The European Forum on HIV/AIDS Children, Young People & Families, based in the UK, is a unique multi-disciplinary agency that works to improve the lives of children and families living with HIV and promotes greater collaboration and partnerships between member countries, NGOs, professionals and service users. The network has expanded from five to 13 centres across Europe since 1993. The Chairman of the Board is Professor Catherine Peckham, Professor of Paediatric Epidemiology, Institute of Child Health, London.
For further information, visit www.euskida.demon.co.uk.
About Positive Action
Positive Action is GSK's international programme of HIV education, care and community support. Through the programme, GSK works in partnership with individuals, community groups, healthcare providers, governments, international agencies and others, in order to pursue the common goals of more effective HIV prevention, education, enhanced care and support for people living with, or affected by HIV/AIDS. Since its inception in 1992, Positive Action has supported and implemented a wide variety of projects at both a national and international level, throughout the world. For more information visit Positive Action on the World Wide Web at www.positiveaction.com.
GlaxoSmithKline - one of the world's leading research-based pharmaceutical and healthcare companies - is committed to improving the quality of human life by enabling people to do more, feel better and live longer. For company information, visit GlaxoSmithKline on the web at www.gsk.com.
Young people in each of the five countries have already spent time sharing their experiences of social exclusion in focus groups. The workshop in Bucharest brings these groups together for the first time from across Europe to share experiences and develop action plans to tackle discrimination and improve healthcare services for children affected by HIV/AIDS.
In the coming months, the young people plan to meet with organisations and policy-makers. The broader findings will then form the basis for developing toolkits and training materials targeted at healthcare providers and community organisations in a bid to improve the services and support available to young people with HIV/AIDS.
For further information, visit www.seypa.net.
Contact: James Parry, SEYPA Project Manager, UK
Tel: +44 20 7376 7065
Fax: +44 20 7681 1932
About social exclusion/isolation
The 2001 UN General Special Assembly on HIV/AIDS (UNGASS) Declaration was a charter signed by all UN member countries, that recommended countries adopt, implement and enforce national policies that prevent discrimination against and protect human rights of people living with HIV/AIDS and vulnerable populations. But many countries have no strategies in place to provide children made vulnerable by HIV/AIDS with essential social support, such as schooling, shelter, nutrition, health and social services. (see http://www.unaids.org/en/default.asp)
Social exclusion forces young people to restrict their social interactions and relationships; limits their choices regarding school, leisure and careers; compromises their access to medical services or social support services.
The young people in the SEYPA program have their own experiences. The working definition of social exclusion defined by project participants at the First Advisory Group meeting which launched this program is: "Social exclusion occurs when people or groups decide consciously or unconsciously to put up barriers, preventing others from full and equal participation, leading to loss of rights, loss of power, lack of integration into society and affecting the ability to live fully."
Links to country organisations:
Italy - CARAP - Comitato Assistenza Ricerca AIDS Pediatrico (Committee for Pediatric AIDS Care and Research)
CARAP is a non-profit organisation founded in 1994 and attached to the Centre for Pediatric AIDS within the Department of Pediatrics at the University of Padova. Carap-Onlus, is headed by Dr Carlo Giaquinto, a leader in Paediatric Aids Care. CARAP is organised into two sections: Research and Patients Care. The organisation has co-ordinated several research projects in partnership with the Pediatric European Network Treatment AIDS (PENTA) and several pharmaceutical companies. CARAP has also been involved in providing services to children and families living with HIV/AIDS, mainly through volunteers and specialists (nurses, psychologists, educators). The group has a strong partnership with Fondazione Moschino (The Moschino Foundation).
Contact: Dr. Carlo Giaquinto, Project Manager
Comitato Assistenza Ricerca AIDS Pediatrico
Tel: +39 049 8213585
Fax: +39 049 8753865
Portugal - AJPAS
AJPAS is a not-for-profit and non-governmental organisation established on the 18th of June 1993. The aim of the association is to contribute to the health promotion within specific groups, by involving them in various activities, facilitating the access to information, developing prevention campaigns on sexually transmitted infections and drug use, as well as stimulating intercultural exchange.
Contact: Paulo Vieira, Youth Co-ordinator
AssociaÃ§Ã£o de Jovens Promotores da Amadora Saudavel
Tel: +351 214 905426
Fax: +351 214 905427
Romania - Romanian Angel Appeal (RAA)
Romanian Angel Appeal is a charity founded in 1990 in London and Los Angeles, and registered in Romania in 1991. Through its projects, RAA focuses on improving the medical, social and psychological services offered to people in need, especially children and young people affected by HIV/AIDS, by providing direct services, developing education programmes for specialists active in the field (physicians, nurses, psychologists, social workers), and implementing education and prevention campaigns. RAA provides administration and co-ordination services to the SEYPA project, as well as being one of the 5 partners.
Russia - EveryChild
EveryChild is the new international development charity brought about by the merger of The Christian Children's Fund of Great Britain (CCFGB) and The European Children's Trust (ECT). EveryChild aims to ensure that children grow up free from disease, poverty and exploitation, and as valued individuals within strong communities. Currently, the charity is working in the following eighteen countries around the world: in the Americas - Brazil, Guyana and Peru, in Asia - Cambodia, India and Thailand, in Africa - Ethiopia, Malawi, and Uganda, in Eastern and Central Europe and the former Soviet Union -Albania, Bulgaria, Georgia, Kosova, Kyrgyzstan, Moldova, Romania, Russia and Ukraine.
Spain - ACTUA (Association of People Living with HIV)
ACTUA is a non-profit organisation, constituted on the 30th of January 1991 and recognised in June 1997, by the Spanish Ministry of Interior, as a selected public service organisation. The goals of the organisation are to provide resources, support, information and counselling for people affected by HIV and their significant others; to facilitate information exchange and advice for professionals, health promoters, associations and other organisations; to collect information about the medical, psychological and social aspects of AIDS; and to promote primary and secondary prevention of HIV and other sexually-transmitted infections, as well as normalisation and non-discrimination.
GlaxoSmithKline (GSK) is one of the world's leading pharmaceutical and healthcare companies and is committed to improving the quality of human life by enabling people to do more, feel better and live longer. GSK has a comprehensive global programme of community partnerships focused on improving health and education. In the UK, GSK supports over 70 charitable organizations in health, science education, the arts and the environment.
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