The UNAIDS is the first UN programme to have civil society formally represented on its governing body. The NGO Delegation to the UNAIDS Program Coordinating Board (PCB) has three roles:
- Participating objectively and independently in the workings and decision-making of the PCB
- Undertaking various forms of proactive and informed advocacy within the structures and processes of the PCB;
- Enhancing the transparency and accountability of relevant PCB decision-making and policy-setting, helping to meet requirements for upwards accountability (towards the PCB and other delegations) and downwards accountability (towards the people, communities and constituencies affected by HIV)
Civil Society Representation on the UNAIDS Programme Coordinating Board
- Angeline Chiwetani, Widows Fountain of Life (WFoL), Zimbabwe
- Musah El-nasoor Lumumba, Uganda Youth Coalition on Adolescent Sexual Reproductive Health Rights and HIV (CYSRA), Uganda
Asia and the Pacific
- Jeffry Acaba, Asia Pacific Network of Young Key Populations (Youth LEAD), Thailand
- Simran Shaikh, India HIV Alliance, India
- Alexandra (Sasha) Volgina, East Europe & Central Asia Union of People Living with HIV (ECUO), the Ukraine
- Ferenc Bagyinszky, AIDS Action Europe (AAE), Germany
Latin America and the Caribbean
- Laurel Sprague, Global Network of People Living with HIV North America (GNP+ NA), the United States
- Trevor Stratton, Canadian Aboriginal AIDS Network, Canada
Widows Fountain of Life (WFoL), Zimbabwe
Angeline is an HIV, gender and human rights activist from Zimbabwe. She is openly living with HIV and was widowed due to HIV in June 2000. She is the Director of Widows Fountain of Life (WFoL) and is a member of the International Community of Women Living with HIV/AIDS (ICW) and Women for Global Fund (W4GF). Angeline has worked with many organizations regionally and globally as a resource person and technical adviser, and has contributed to the boards of many local and international NGOs. She has also engaged with different organizations and companies by running wellness programs and formulating HIV workplace systems. She is a member of the Zimbabwe Country Coordinating Mechanism for the Global Fund. She is currently conducting her studies in Development. In 2004, Angeline won a Lettern Foundation International Award for Courageous Leadership in recognition of the key role that she played in stigma reduction and advocating for access to HIV treatment.
Widows Fountain of Life seeks to empower women widowed by HIV, with particular focus on health, economic and social well-being. Founded in 2011 to address the concerns of widows, WFoL uses a trifocal lens to transform communities through HIV, gender and rights. The widows – who have diverse needs – are the main beneficiaries of WFoL. WFoL is affiliated and works closely with many local and regional forums, including different key populations affected by HIV. WFoL holds special events every year on June 23, March 8, and December 1 to commemorate International Widows Day, International Women’s Day, and World AIDS Day, respectively.
Uganda Youth Coalition on Adolescent Sexual Reproductive Health Rights and HIV (CYSCRA), Uganda
Musah Lumumba El-nasoor is a 29 year old youth leader and the national co-ordinator of Uganda Youth Coalition on Adolescent Sexual Reproductive Health Rights and HIV (CYSRA-Uganda), a coalition of 15 youth organizations and networks working together to sharpen adolescent components in national HIV and SRHR responses. He is also a member of the African Young Positives Network (AY+), The PACT and an Advisor on HIV Treatment and SRHR within the global network of young people living with HIV (Y+). Musah also serves as the African Youth advisor to the Point 7 delegation to the Global Fund (2014-2016)
Musah holds a Bachelor degree in Clinical Medicine and Community Health, with a post graduate in Health Services Management. While in clinical practice, Musah was more inclined to HIV treatment, safe male circumcision, and contraception for young people.
Jeffry P. Acaba
Asia-Pacific Network of Young Key Populations (Youth LEAD), Thailand
Jeffry Acaba is a Filipino HIV and LGBT rights activist currently based in Bangkok, Thailand. He has a vast experience on HIV prevention, advocacy, strategic information and human rights and has worked as a facilitator and has led missions around the Philippines and in other countries in the region such as Bangladesh, Cambodia, Brunei Darussalam, Sri Lanka, and Thailand, to name a few. He started as a volunteer peer educator in 2007 and eventually worked with the principal recipient of the Global Fund to fight AIDS, Tuberculosis, and Malaria (GFATM) in the Philippines as a monitoring and evaluation coordinator. In 2010, he worked as a program coordinator for Action for Health Initiatives (ACHIEVE), expanding his advocacy to ensure access to justice of Filipinos living with HIV, and to assist local governments in passing sound and evidence-informed HIV-related policies. In 2010, along with other young people and youth activists from key populations in Asia Pacific, Jeff formed Youth LEAD to address the lack of space where young key populations in the region can come together and raise their voice. He has remained active with the network to promote and uphold the rights of young people from key populations in the regional and national level.
Jeff obtained his Baccalaureate degree in Behavioral Sciences at the University of the Philippines in 2006 and has finished his course work for the Masters of Arts degree in Anthropology from the same university. He practices yoga and enjoys discovering the best milk tea and coffee the world has to offer while listening to indie pop and math rock in his free time. His favorite film is Bernal’s 1982 classic, Himala (Miracle).
Youth LEAD started in 2010 as a pilot project of 7 Sisters (the Coalition of Asia-Pacific Networks on HIV and AIDS), with support from UNFPA, UNICEF, UNESCO and UNAIDS. With its Secretariat based in Bangkok, Thailand, Youth LEAD’s mission is to become a change catalyst to ensure that the rights of young people from key populations are recognized and respected and the impact of HIV and AIDS is mitigated through meaningful engagement in the HIV response. Youth LEAD has around 50 focal points from young people from key populations in 20 countries across the Asia Pacific. Its activities include regional and national advocacy in making policies more inclusive for young key populations, providing financial and technical support to youth-led organizations, capacity building, and building partnerships with communities and other stakeholders.
India HIV/AIDS Alliance, India
Simran, a hijra, has dedicated her professional life to human rights advocacy. She has been a pioneer in India in raising the issues of people living with HIV (PLHIV) in the context of transgender and hijra communities. She is a strong advocate for right to health for all. Simran has developed the capacity of community-based organizations (CBOs) and networks that work for PLHIV and gender minorities.
She has been a consultant to national and international organizations on issues of gender and sexual minorities living with HIV and intends to continue her work on health & human rights for the most marginalized communities in the future. A graduate from Mumbai University, she currently works with India HIV/AIDS Alliance in New Delhi as a Senior Program Office for Vihaan & Pehchan ( Global fund supported initiative strengthening community systems for men who have sex with other men, transgenders and Hijra on Prevention, Care and Support).
Alexandra (Sasha) Volgina
East Europe & Central Asia Union of People Living with HIV, the Ukraine
Alexandra (Sasha) Volgina is the Senior Advocacy Officer in East Europe and Central Asia Union of People Living with HIV (ECUO). After receiving a positive HIV diagnosis in 2000, Sasha started working in the field of treatment access and human rights for those living with or at risk of exposure to HIV. She started working in the field of HIV/AIDS activism and advocacy as a volunteer. She then co-founded and became the director of Svecha (candle), one of the first community-based organisations for people living with HIV (PLHIV) in Russia. In 2003, she co-founded FrontAIDS, the first treatment advocacy movement in Russia. She has received several awards for her work, She was recognised with an MTV “Staying Alive” award for her contribution to combating the HIV/AIDS epidemic. For her work in establishing anti retroviral therapy (ART) adherence programs for drug users in 2007, she was awarded the Carol and Travis Jenkins Award. Since 2009, her work has shifted to projects devoted to women living with HIV, co-founding the first all-Russian women network “E.V.A.” and acting as the director of the “Patients in Control” treatment access movement. In 2013, Sasha moved to Kiev, the Ukraine to work for the international community organization ECUO.
In 2005, the HIV/AIDS epidemic in Eastern Europe and Central Asia (EECA) reached such scale that literally each country of the region founded its own movement of HIV-positive people. Various events were held and aimed at improving the quality of life for people living with HIV, but most were isolated from regional and international initiatives. The network was besieged with several problems: there was a lack of coordination between people living with HIV (PLWH) communities in the field of advocacy; lack of expert “peer-to-peer” assistance; and low organizational capacities that have led to decreased effectiveness level of activities inside countries. There was also a need to create a strong regional PLWH union that can effectively participate in the development of policies where human rights is the framework for overcoming HIV/AIDS epidemic in the EECA region. In the first meeting of this PLWH organizations in June 2005, representatives from the Ukraine, Russia, Kazakhstan, Kyrgyzstan, Uzbekistan and Moldova gathered in Kyiv. The UNAIDS Secretariat and the All-Ukrainian Network of PLWH supported the initiative to establish this regional union. The international charitable organization “East Europe and Central Asia Union of PLWH” (ECUO) was registered in 2007. The composition of the union included 14 countries, which eloquently spoke about topicality and timeliness of such initiative. ECUO is a regional partner organization that was established by and for PLWH. Currently, PLWH organizations from 16 countries of the region are ECUO members.
AIDS Action Europe, Germany
Ferenc is an HIV and human rights activist from Hungary, currently based in Berlin, Germany. He started working in the field of HIV in 2007, first as a volunteer for a self-support group and a VCT campaign. In 2008 he joined the team of the Hungarian Civil Liberties Union (HCLU) where he was head of the HIV/AIDS Program for 8 years, also working on LGBT-issues. He also became very active at the European level; he was a member of the Steering Committee of AIDS Action Europe (AAE), a network of over 440 NGOs in Europe and Central Asia between 2009 and 2014.
Ferenc currently works as project manager at AAE. He is working at the European advocacy level on projects on issues of affordability of medications, early diagnosis and treatment, and access to prevention, treatment and care programs focusing on key populations, in particular men who have sex with men (MSM) and migrants in irregular situations. He is a treatment advocate and member of the European AIDS Treatment Group (EATG) and he is one of the founders of the Network of Low HIV-Prevalence Countries in Central and Southeast Europe (NeLP). He is also a trainer and has delivered trainings on treatment literacy and advocacy, and mental health and HIV in Central and Southeast Europe.
Simon is a gay activist from Paraguay who was born in April 1980. Moved by the difficulties that he faced at 16 in the process of coming out to his family and identifying his sexuality, he became interested and started activism in human rights. He is the co-founder and Executive Director of SOMOSGAY, the lead LGBT organization in Paraguay with strong HIV information, service provision, and advocacy platforms. He is closely involved in the work of SOMOSGAY to promote the protection, acceptance and human rights of LGBT people in Paraguay, including those affected by HIV.
SOMOSGAY is an LGBT rights organization based in Asuncion, Paraguay, committed to creating effective strategies against homophobia, defending and advancing human rights, and improving HIV prevention, treatment and care. SOMOSGAY works to build a supportive, pluralistic, democratic, equitable and inclusive Paraguayan society in which lesbian, gay, bisexual and transgender people live happily with full equality in their homes, schools and workplaces.
Global Network of People Living with HIV North America (GNP+ NA), United States
Laurel Sprague is the Regional Coordinator for the Global Network of People Living with HIV, North America (GNP+NA) and the Research Director for The SERO Project, a not-for-profit human rights organization promoting the empowerment of people with HIV, combating HIV-related stigma and advocating for sound public health and HIV prevention policies. Laurel has worked in the field of HIV since her own positive diagnosis in 1991 in the areas of prevention, community planning, advocacy, education, and research. She currently works primarily with grassroots and community-based organizations to support participative, community-based research projects and to conduct qualitative and quantitative program evaluations.
Laurel has provided technical assistance for the PLHIV Stigma Index to local, national, and global organizations and to networks of people living with HIV in countries in North America, Sub-Saharan Africa, Central and Eastern Europe, and Central Asia. She has assisted the UNAIDS PCB NGO Delegation in research and analysis on HIV stigma, discrimination, and criminalization and has published papers and reports on workplace discrimination and barriers to HIV prevention, treatment, care, and support. In addition, she serves as a member of the Stigma Indicator Working Group convened by UNAIDS to develop common global indicators for measuring HIV-related stigma, the Stigma in Healthcare Settings Working Group convened by the Health Policy Project and USAID, and the National Working Positive Coalition, a collaborative of researchers, advocates, and people living with HIV who use research and advocacy to improve sustainable employment and the financial well-being of people living with HIV.
Laurel teaches Political Theory at Eastern Michigan University and is a PhD candidate at Wayne State University in Detroit, Michigan.Her research focuses on global civil society, democratic processes, and the resilience and resistance of marginalized peoples, particularly when faced with stigma and discrimination, criminalization, and human rights abuses.
Canadian Aboriginal AIDS Network, Canada
Trevor is a 50-year old man from the Mississaugas of the New Credit First Nation near Toronto, Canada with mixed English and Ojibwe heritage. Diagnosed with HIV in 1990, Trevor turned to his community and the Indigenous HIV & AIDS movement for support and became an activist, volunteer and consultant at the local, national and regional levels. He is now the Coordinator for the International Indigenous Working Group on HIV & AIDS (IIWGHA) for its host organization, the Canadian Aboriginal AIDS Network (CAAN). Trevor is one of two Liaisons for Aboriginal People living with HIV & AIDS (APHA Liaison) at CAAN. For the past 6 years, Trevor has been a board member of the Canadian AIDS Treatment Information Exchange (CATIE).